TY - JOUR AU - Mao, Chao AU - Li, Jiaxuan AU - Pang, Cheong-Iao Patrick AU - Zhu, Quanjing AU - Chen, Rong PY - 2025/5/22 TI - Identifying Kidney Stone Risk Factors Through Patient Experiences With a Large Language Model: Text Analysis and Empirical Study JO - J Med Internet Res SP - e66365 VL - 27 KW - health risk identification KW - chronic disease management KW - GPT-4 KW - large language model KW - text analysis N2 - Background: Kidney stones, a prevalent urinary disease, pose significant health risks. Factors like insufficient water intake or a high-protein diet increase an individual?s susceptibility to the disease. Social media platforms can be a valuable avenue for users to share their experiences in managing these risk factors. Analyzing such patient-reported information can provide crucial insights into risk factors, potentially leading to improved quality of life for other patients. Objective: This study aims to develop a model KSrisk-GPT, based on a large language model (LLM) to identify potential kidney stone risk factors from web-based user experiences. Methods: This study collected data on the topic of kidney stones on Zhihu in the past 5 years and obtained 11,819 user comments. Experts organized the most common risk factors for kidney stones into six categories. Then, we use the least-to-most prompting in the chain-of-thought prompting to enable GPT-4.0 to think like an expert and ask GPT to identify risk factors from the comments. Metrics, including accuracy, precision, recall, and F1-score, were used to evaluate the performance of such a model. Results: Our proposed method outperforms other models in identifying comments containing risk factors with 95.9% accuracy and F1-score, with a precision of 95.6% and a recall of 96.2%. Out of the 863 comments identified with risk factors, our analysis showed the most mentioned risk factors for kidney stones in Zhihu user discussions, mainly including dietary habits (high protein, high calcium intake), insufficient water intake, genetic factors, and lifestyle. In addition, new potential risk factors were discovered with GPT, such as excessive use of supplements like vitamin C and calcium, laxatives, and hyperparathyroidism. Conclusions: Comments from social media users offer a new data source for disease prevention and understanding patient journeys. Our method not only sheds light on using LLMs to efficiently summarize risk factors from social media data but also on LLMs? potential to identify new potential factors from the patient?s perspective. UR - https://www.jmir.org/2025/1/e66365 UR - http://dx.doi.org/10.2196/66365 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/66365 ER - TY - JOUR AU - Yoshihara, Shota AU - Takahashi, Kayoko AU - Kawaguchi, Hiroyuki AU - Harai, Nozomi AU - Tsuchiya, Kyoichiro PY - 2025/5/20 TI - Effects of Using a Digital Peer-Supported App on Glycated Hemoglobin Changes Among Patients With Type 2 Diabetes: Prospective Single-Arm Pilot Study JO - JMIR Form Res SP - e72659 VL - 9 KW - diabetes type 2 KW - T2DM KW - self-management KW - digital health KW - HbA1c KW - lifestyle intervention KW - digital intervention KW - type 2 diabetes mellitus KW - glycated hemoglobin N2 - Background: Controlling glycated hemoglobin (HbA1c) levels can be challenging for patients with type 2 diabetes mellitus (T2DM). Peer support promotes HbA1c control, and a digital peer-supported app designed for group interactions may enable patients with T2DM to encourage one another to achieve better HbA1c outcomes. However, no studies have investigated the use of digital peer-supported apps to control HbA1c levels in patients with T2DM. Objective: This pilot study aimed to explore the effects of a digital peer-supported app on HbA1c control in patients with T2DM. Methods: This prospective single-arm pilot study enrolled patients with T2DM who owned smartphones and visited medical institutions in Japan. During the 3-month intervention, participants used a digital peer-supported app in addition to receiving standard care. This app allowed participants to share activity logs and concerns via a chat function to improve HbA1c levels through mutual engagement and encouragement. The primary outcome was the change in HbA1c levels, measured at health care facilities at baseline and after 3 months. The secondary outcomes were body weight and blood pressure, with the most recent data obtained from hospitals and clinics. Physical activity (?1 hour/day) was assessed at the same time points using a self-reported questionnaire. Results: The study included 21 participants with a median age of 56 (IQR 51?61) years, of which 13 (61.9%) were female. After using the digital peer-supported app for 3 months, the participants? HbA1c levels significantly decreased from 7.1% (SD 0.6%) at baseline to 6.9% (SD 0.1%) (P=.04). Similarly, participants? body weight decreased from 70.7 (SD 12.7) kg to 69.9 (SD 12.4) kg (P =.004) through app use. Although blood pressure decreased slightly from 128.2 (SD 12.5) mm Hg to 126.0 (SD 12.9) mm Hg, this change was not statistically significant (P=.20). Additionally, the proportion of participants engaged in ?1 hour of daily physical activity significantly increased from 23.5% (n=4) to 58.5% (n=10) (P=.03). Conclusions: In addition to receiving standard clinical care, the use of a digital peer-supported app may significantly lower HbA1c levels in patients with T2DM by promoting healthy behaviors. UR - https://formative.jmir.org/2025/1/e72659 UR - http://dx.doi.org/10.2196/72659 ID - info:doi/10.2196/72659 ER - TY - JOUR AU - Treadgold, M. Bethan AU - Coulson, S. Neil AU - Campbell, L. John AU - Lambert, Jeffrey AU - Pitchforth, Emma PY - 2025/5/16 TI - Quality and Misinformation About Health Conditions in Online Peer Support Groups: Scoping Review JO - J Med Internet Res SP - e71140 VL - 27 KW - quality KW - online KW - health KW - peer KW - online support group KW - forum KW - information KW - advice KW - approval KW - assessment KW - PRISMA N2 - Background: The use of health-related online peer support groups to support self-management of health issues has become increasingly popular. The quality of information and advice may have important implications for public health and for the utility of such groups. There is some evidence of variable quality of web-based health information, but the extent to which misinformation is a problem in online peer support groups is unclear. Objective: We aimed to gain insight into the quality of information and advice about health conditions in online peer support groups and to review the tools available for assessing the quality of such information. Methods: A scoping review was undertaken following the Joanna Briggs Institute scoping review methodology. We searched electronic databases (MEDLINE [Ovid], CINAHL, Web of Science, ASSIA, ProQuest Dissertation and Theses, and Google Scholar) for literature published before November 2023, as well as citations of included articles. Primary research studies, reviews, and gray literature that explored the quality of information and advice in online peer support groups were included. Title and abstracts were independently screened by 2 reviewers. Data were extracted and tabulated, and key findings were summarized narratively. Results: A total of 14 (0.45%) relevant articles, from 3136 articles identified, were included. Of these, 10 (71%) were primary research articles comprising diverse quality appraisal methodologies, and 4 (29%) were review articles. All articles had been published between 2014 and 2023. Across the literature, there was more evidence of poor quality information and misinformation than of good quality information and advice, particularly around long-term and life-threatening conditions. There were varying degrees of misinformation about non?life-threatening conditions and about mental health conditions. Misinformation about noncommunicable diseases was reported as particularly prevalent on Facebook. Fellow online peer support group users often played an active role in correcting misinformation by replying to false claims or providing correct information in subsequent posts. Quality appraisal tools were reported as being used by researchers and health care professionals in appraising the quality of information and advice, including established tools for the appraisal of health-related information (eg, DISCERN, HONcode criteria, and Journal of the American Medical Association benchmark criteria). No tools reported were specifically designed to appraise online peer support group content. Conclusions: While there is good quality information and advice exchanged between users in online peer support groups, our findings show that misinformation is a problem, which is a matter of public health concern. Confidence in the quality of information shared may determine the utility of online peer support groups for patients and health care professionals. Our review suggests that clinical and academic experts in health conditions could play a valuable role in ensuring the quality of content. Several quality appraisal tools are available to support such an initiative. UR - https://www.jmir.org/2025/1/e71140 UR - http://dx.doi.org/10.2196/71140 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/71140 ER - TY - JOUR AU - Guan, Shaowei AU - Hui, Vivian AU - Stiglic, Gregor AU - Constantino, Eva Rose AU - Lee, Ji Young AU - Wong, Ching Arkers Kwan PY - 2025/5/12 TI - Classifying the Information Needs of Survivors of Domestic Violence in Online Health Communities Using Large Language Models: Prediction Model Development and Evaluation Study JO - J Med Internet Res SP - e65397 VL - 27 KW - domestic violence KW - help seeking KW - information needs KW - online health communities KW - large language models KW - generative artificial intelligence KW - multiclass text classification KW - artificial intelligence N2 - Background: Domestic violence (DV) is a significant public health concern affecting the physical and mental well-being of numerous women, imposing a substantial health care burden. However, women facing DV often encounter barriers to seeking in-person help due to stigma, shame, and embarrassment. As a result, many survivors of DV turn to online health communities as a safe and anonymous space to share their experiences and seek support. Understanding the information needs of survivors of DV in online health communities through multiclass classification is crucial for providing timely and appropriate support. Objective: The objective was to develop a fine-tuned large language model (LLM) that can provide fast and accurate predictions of the information needs of survivors of DV from their online posts, enabling health care professionals to offer timely and personalized assistance. Methods: We collected 294 posts from Reddit subcommunities focused on DV shared by women aged ?18 years who self-identified as experiencing intimate partner violence. We identified 8 types of information needs: shelters/DV centers/agencies; legal; childbearing; police; DV report procedure/documentation; safety planning; DV knowledge; and communication. Data augmentation was applied using GPT-3.5 to expand our dataset to 2216 samples by generating 1922 additional posts that imitated the existing data. We adopted a progressive training strategy to fine-tune GPT-3.5 for multiclass text classification using 2032 posts. We trained the model on 1 class at a time, monitoring performance closely. When suboptimal results were observed, we generated additional samples of the misclassified ones to give them more attention. We reserved 184 posts for internal testing and 74 for external validation. Model performance was evaluated using accuracy, recall, precision, and F1-score, along with CIs for each metric. Results: Using 40 real posts and 144 artificial intelligence?generated posts as the test dataset, our model achieved an F1-score of 70.49% (95% CI 60.63%-80.35%) for real posts, outperforming the original GPT-3.5 and GPT-4, fine-tuned Llama 2-7B and Llama 3-8B, and long short-term memory. On artificial intelligence?generated posts, our model attained an F1-score of 84.58% (95% CI 80.38%-88.78%), surpassing all baselines. When tested on an external validation dataset (n=74), the model achieved an F1-score of 59.67% (95% CI 51.86%-67.49%), outperforming other models. Statistical analysis revealed that our model significantly outperformed the others in F1-score (P=.047 for real posts; P<.001 for external validation posts). Furthermore, our model was faster, taking 19.108 seconds for predictions versus 1150 seconds for manual assessment. Conclusions: Our fine-tuned LLM can accurately and efficiently extract and identify DV-related information needs through multiclass classification from online posts. In addition, we used LLM-based data augmentation techniques to overcome the limitations of a relatively small and imbalanced dataset. By generating timely and accurate predictions, we can empower health care professionals to provide rapid and suitable assistance to survivors of DV. UR - https://www.jmir.org/2025/1/e65397 UR - http://dx.doi.org/10.2196/65397 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/65397 ER - TY - JOUR AU - Bretschneider, Pia Maxi AU - Kolasi?ska, Barbara Agnieszka AU - ?omvárska, Lenka AU - Klásek, Jan AU - Mare?, Jan AU - Schwarz, EH Peter PY - 2025/5/9 TI - Evaluation of the Impact of Mobile Health App Vitadio in Patients With Type 2 Diabetes: Randomized Controlled Trial JO - J Med Internet Res SP - e68648 VL - 27 KW - digital health KW - mHealth KW - digital therapeutics KW - type 2 diabetes mellitus KW - DiGA N2 - Background: Effective diabetes management requires a multimodal approach involving lifestyle changes, pharmacological treatment, and continuous patient education. Self-management demands can be overwhelming for patients, leading to lowered motivation, poor adherence, and compromised therapeutic outcomes. In this context, digital health apps are emerging as vital tools to provide personalized support and enhance diabetes management and clinical outcomes. Objective: This study evaluated the impact of the digital health application Vitadio on glycemic control in patients with type 2 diabetes mellitus (T2DM). Secondary objectives included evaluating its effects on cardiometabolic parameters (weight, BMI, waist circumference, blood pressure, and heart rate) and self-reported measures of diabetes distress and self-management. Methods: In this 6-month, 2-arm, multicenter, unblinded randomized controlled trial, patients aged 18 years or older diagnosed with T2DM were randomly assigned (1:1) to an intervention group (IG) receiving standard diabetes care reinforced by the digital health app Vitadio or to a control group (CG) provided solely with standard diabetes care. Vitadio provided a mobile-based self-management support tool featuring educational modules, motivational messages, peer support, personalized goal setting, and health monitoring. The personal consultant was available in the app to provide technical support for app-related issues. The primary outcome, assessed in the intention-to-treat population, was a change in glycated hemoglobin (HbA1c) levels at 6 months. Secondary outcomes included changes in cardiometabolic measures and self-reported outcomes. Data were collected in 2 study centers: diabetologist practice in Dessau-Roßlau and the University of Dresden. Results: Between November 2022 and June 2023, a total of 276 patients were screened for eligibility, with 149 randomized to in intervention group (IG; n=73) and a control group (CG; n=76). The majority of participants were male (91/149, 61%). The dropout rate at month 6 was 19% (121/149). While both groups achieved significant HbA1c reduction at 6 months (IG: mean ?0.8, SD 0.9%, P<.001; CG: mean ?0.3, SD 0.7%, P=.001), the primary confirmatory analysis revealed statistically significant advantage of the IG (adjusted mean difference: ?0.53%, SD 0.15, 95% CI ?0.24 to ?0.82; P<.001; effect size [Cohen d]=0.67, 95% CI 0.33-1). Significant between-group differences in favor of the IG were also observed for weight loss (P=.002), BMI (P=.001) and systolic blood pressure (P<.03). In addition, Vitadio users experienced greater reduction in diabetes-related distress (P<.03) and obtained more pronounced improvements in self-care practices in the areas of general diet (P<.001), specific diet (P<.03), and exercise (P<.03). Conclusions: This trial provides evidence for the superior efficacy of Vitadio in lowering the HbA1c levels in T2DM patients compared to standard care. In addition, Vitadio contributed to improvements in cardiometabolic health, reduced diabetes-related distress, and enhanced self-management, highlighting its potential as an accessible digital tool for comprehensive diabetes management. Trial Registration: German Clinical Trials Registry DRKS00027405; https://drks.de/search/de/trial/DRKS00027405. UR - https://www.jmir.org/2025/1/e68648 UR - http://dx.doi.org/10.2196/68648 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/68648 ER - TY - JOUR AU - Robinson, Noah AU - Ramos, N. Francisco AU - Hollon, D. Steven AU - Han, T. Gloria AU - Ezawa, D. Iony PY - 2025/5/6 TI - Cognitive Behavioral Immersion for Depression: Protocol for a Three-Arm Randomized Controlled Trial of Peer-Based Coaching in the Metaverse JO - JMIR Res Protoc SP - e65970 VL - 14 KW - cognitive behavioral immersion KW - virtual reality KW - anxiety KW - mental health KW - depression KW - stress KW - protocol KW - randomized controlled trial KW - RCT KW - coaching KW - metaverse KW - behavioral therapy KW - skills training intervention N2 - Background: Depression and anxiety are among the most common mental health concerns globally. Efficacious treatments such as cognitive behavioral therapy exist but remain difficult to access and scale. Cognitive behavioral immersion (CBI)?a cognitive behavioral skills training intervention delivered by peer coaches in the metaverse?has been developed to address these barriers. CBI can be used through a virtual reality headset or via flat-screen devices such as phones, tablets, or computers. Pilot data have established its usability among participants with clinical levels of depression and anxiety. However, more research is needed to determine whether CBI causes decreases in these symptoms and how delivery via virtual reality compares to flat-screen devices. Objective: This protocol aims to conduct a randomized controlled trial evaluating the efficacy of immersive CBI accessed via a virtual reality headset (CBI-VR) as compared to a less immersive (but more accessible) CBI condition accessed via a flat-screen device (CBI-FS) and each to a delayed access control (DAC). Methods: A total of 306 adults experiencing clinical levels of depressive symptoms are being recruited nationally to participate in this web-based trial. Participants will be randomized according to a 1:1:1 ratio to one of three conditions: (1) CBI-VR, (2) CBI-FS, and (3) DAC. The CBI program consists of eight weekly 60-minute group sessions led by trained peer coaches who teach cognitive behavioral skills. The acute period of each condition will last 8 weeks with a follow-up period of 6 months. The primary outcome is depressive symptoms; secondary outcomes are anxiety symptoms and quality of life. Outcomes will be assessed once at baseline, weekly during the course of the intervention, and monthly during follow-ups. We will use hierarchical linear models to assess differences in the rate of symptom change among conditions. We will also explore potential prognostic (demographics and immersion) and prescriptive (cognitive behavioral skills, group alliance, and program engagement) predictors, as well as potential mechanisms (cognitive change and social support) of response. Results: We hypothesize that participants randomized to either CBI group will experience greater symptom improvement than those in DAC and that CBI-VR participants will improve more than CBI-FS participants. This study was funded in September 2023. Data collection began in February 2024. As of January 2025, all 306 participants have been enrolled. Data collection should conclude by September 2025. Data have not yet been analyzed. Expected results to be submitted for publication in the winter of 2025. Conclusions: This trial will determine if CBI via either device is efficacious as compared to DAC and whether virtual reality enhances outcomes. Findings will contribute to the literature on using the metaverse and virtual reality to facilitate effective accessible mental health interventions, particularly for depression. Trial Registration: ClinicalTrials.gov NCT06418997; https://clinicaltrials.gov/study/NCT06418997 International Registered Report Identifier (IRRID): DERR1-10.2196/65970 UR - https://www.researchprotocols.org/2025/1/e65970 UR - http://dx.doi.org/10.2196/65970 UR - http://www.ncbi.nlm.nih.gov/pubmed/40327374 ID - info:doi/10.2196/65970 ER - TY - JOUR AU - Kaliappan, Sidharth AU - Liu, Chunyu AU - Jain, Yoshee AU - Karkar, Ravi AU - Saha, Koustuv PY - 2025/5/5 TI - Online Communities as a Support System for Alzheimer Disease and Dementia Care: Large-Scale Exploratory Study JO - JMIR Aging SP - e68890 VL - 8 KW - social media KW - natural language KW - Alzheimer disease KW - social support KW - online communities KW - machine learning N2 - Background: Alzheimer disease (AD) is the leading type of dementia, demanding comprehensive understanding and intervention strategies. In the United States, where over 6 million people are impacted, the prevalence of AD and related dementias (AD/ADRD) presents a growing public health challenge. However, individuals living with AD/ADRD and their caregivers frequently express feelings of marginalization, describing interactions characterized by perceptions of patient infantilization and a lack of respect. Objective: This study aimed to address 2 key research questions (RQs). For RQ1, we investigated the needs and concerns expressed by participants in online social communities focused on AD/ADRD, specifically on 2 platforms?Reddit?s r/Alzheimers and ALZConnected. For RQ2, we examined the prevalence and distribution of social support corresponding to these needs and concerns, and the association between these needs and received support. Methods: We collected 13,429 posts and comments from the r/Alzheimers subreddit spanning July 2014 to November 2023, and 90,113 posts and comments from ALZConnected between December 2020 (the community?s earliest post) and November 2023. We conducted topic modeling using latent Dirichlet allocation (LDA), followed by labeling to identify the major topical themes of discussions. We used transfer learning classifiers to identify the occurrences of emotional support (ES) and informational support (IS) in the comments (or responses) in the discussions. We built regression models to examine how various topical themes are associated with the kinds of support received. Results: Our analysis revealed a diverse range of topics reflecting community members? varying needs and concerns of individuals affected by AD/ADRD. These themes encapsulate the primary discussions within the online communities: memory care, nursing and caregiving, gratitude and acknowledgment, and legal and financial considerations. Our findings indicated a higher prevalence of IS compared to ES. Regression models revealed that ES primarily occurs in posts relating to nursing and caring, and IS primarily occurs in posts concerning medical conditions and diagnosis, legal and financial, and caregiving at home. Conclusions: This study reveals that online communities dedicated to AD/ADRD support engage in discussions on a wide range of topics, such as memory care, nursing, caregiving, and legal and financial challenges. The findings shed light on the key pain points and concerns faced by individuals managing AD/ADRD in their households, revealing how they leverage online platforms for guidance and support. These insights underscore the need for targeted institutional and social interventions to address the specific needs of AD/ADRD patients, caregivers, and other family members. UR - https://aging.jmir.org/2025/1/e68890 UR - http://dx.doi.org/10.2196/68890 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/68890 ER - TY - JOUR AU - Waring, E. Molly AU - McManus-Shipp, E. Katherine AU - Field, M. Christiana AU - Bhusal, Sandesh AU - Perez, Asley AU - Shapiro, Olivia AU - Gaspard, A. Sophia AU - Dennis, Cindy-Lee PY - 2025/4/30 TI - Exposure to and Engagement With Digital Psychoeducational Content and Community Related to Maternal Mental Health by Perinatal Persons and Mothers: Protocol for a Web-Based Survey With Optional Follow-Up JO - JMIR Res Protoc SP - e64075 VL - 14 KW - social media KW - podcasts KW - blogs KW - perinatal mental health KW - maternal mental health KW - digital health KW - engagement N2 - Background: Leveraging digital platforms may be an effective strategy for connecting perinatal persons and mothers with evidence-based information and support related to maternal mental health and peers. Momwell is a mom-centered model of care that provides psychoeducational content through several digital platforms, including social media, a podcast, and a blog. The aims of this project were to describe how perinatal persons and mothers engage with Momwell?s psychoeducational content and community; describe the perceived benefits of exposure to and engagement with content and community; examine associations between engagement with digital psychoeducational content and maternal mental health, parenting attitudes, and interparental relationships; and examine changes in mental health and parenting attitudes and concurrent engagement with Momwell?s digital psychoeducational content and community over 2 to 3 months. Objective: This paper aims to describe the design of a study of perinatal persons and mothers who are exposed to or engage with Momwell?s psychoeducational content and community and describe sample characteristics. Methods: Adults who engaged with Momwell on any of their digital platforms were recruited to complete a web-based survey in July 2023 to September 2023. Participants completed either a longer or shorter survey. Participants who provided permission to be recontacted were invited to complete a second survey 2 to 3 months later. The surveys included validated psychological measures, study-specific quantitative questions, and open-ended questions that assessed participant demographics, exposure to and engagement with Momwell?s psychoeducational content and community, maternal mental health, parenting relationships, parenting self-efficacy, and additional psychosocial and health measures. We outline planned analyses to achieve the aims of the project. Results: Data collection occurred from July 2023 to September 2023 (N=584). A subset of participants completed the optional second survey in October 2023 to December 2023 (N=246). Participants were >99% mothers (582/584, 99.7%); 45.5% (266/584) perinatal (59/584, 10.1% pregnant; 210/584, 36% post partum); and, on average, aged 32.4 (SD 3.9) years. In total, 59.1% (345/584) were from the United States, 35.6% (208/584) were from Canada, and 5.3% (31/584) were from other countries. The vast majority (552/584, 94.5%) followed Momwell on Instagram, 44.2% (258/584) listened to the Momwell podcast, and 41.1% (240/584) received their newsletter. Most participants had been exposed to Momwell?s psychoeducational content for at least 6 months across the different platforms (range 16/36, 44% on TikTok to 480/552, 87% on Instagram). Conclusions: Data from this study will provide insights into how pregnant persons and mothers use digital psychoeducational content and peer communities to support their mental health throughout the perinatal period and into the early years of motherhood. Leveraging digital platforms to disseminate evidence-based digital psychoeducational content related to maternal mental health and connect peers has the potential to change how we care for perinatal persons and mothers. International Registered Report Identifier (IRRID): DERR1-10.2196/64075 UR - https://www.researchprotocols.org/2025/1/e64075 UR - http://dx.doi.org/10.2196/64075 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/64075 ER - TY - JOUR AU - Nesoff, D. Elizabeth AU - Palamar, J. Joseph AU - Li, Qingyue AU - Li, Wenqian AU - Martins, S. Silvia PY - 2025/4/30 TI - Challenging the Continued Usefulness of Social Media Recruitment for Surveys of Hidden Populations of People Who Use Opioids JO - J Med Internet Res SP - e63687 VL - 27 KW - opioids KW - substance use KW - survey methods KW - social media KW - recruitment KW - survey KW - drug overdose KW - substance use disorder KW - online recruitment KW - online survey KW - mental health KW - addiction KW - data collection UR - https://www.jmir.org/2025/1/e63687 UR - http://dx.doi.org/10.2196/63687 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63687 ER - TY - JOUR AU - Arquembourg, Jocelyne AU - Glaser, Philippe AU - Roblot, France AU - Metzler, Isabelle AU - Gallant-Dewavrin, Mélanie AU - Nanguem, Feutze Hugues AU - Mebarki, Adel AU - Voillot, Paméla AU - Schück, Stéphane PY - 2025/4/25 TI - Discussions of Antibiotic Resistance on Social Media Platforms: Text Mining and Mixed Methods Content Analysis Study JO - JMIR Form Res SP - e37160 VL - 9 KW - antibiotic ineffectiveness KW - antibiotic resistance KW - health-related quality of life KW - real-world KW - social media KW - quality of life KW - quantitative KW - qualitative KW - app KW - application KW - online KW - medical information KW - French KW - users KW - antibiotic KW - social media use N2 - Background: With the increasing popularity of web 2.0 apps, social media has made it possible for individuals to post messages on antibiotic ineffectiveness. In such online conversations, patients discuss their quality of life (QoL). Social media have become key tools for finding and disseminating medical information. Objective: To identify the main themes of discussion, the difficulties encountered by patients with respect to antibiotic ineffectiveness and the impact on their QoL (physical, psychological, social, or financial). Methods: A noninterventional retrospective study was carried out by collecting social media posts in French language written by internet users mentioning their experience with antibiotics, and the impact of their ineffectiveness on their QoL. Messages posted between January 2014 and July 2020 were extracted from French-speaking publicly available online forums. Results: A total of 3773 messages were included in the analysis corpus after extraction and filtering. These messages were posted by 2335 individual web users, most of them being women around 35 years of age. Inefficacy of treatment options and the lack of information regarding the use of antibiotics were among the most discussed topics. QoL was discussed in 63% of the 3773 messages posted. The most common is the physical impact (78%). Patients discussed the persistence of symptoms and adverse effects. The second kind of impact is psychological (65%), characterized by feelings of anxiety or despair about the situation. Conclusions: This social media analysis allowed us to identify a strong impact of the perceived ineffectiveness of antibiotic therapy on patients? daily life particularly in terms of physical and psychological consequences. These results provide health care experts information directly generated by patients regarding their own experiences. Social media studies constitute a complementary source of evidence that could be used to optimize messages to the public about appropriate use of antibiotics. UR - https://formative.jmir.org/2025/1/e37160 UR - http://dx.doi.org/10.2196/37160 ID - info:doi/10.2196/37160 ER - TY - JOUR AU - Wood, E. Helen AU - Karampatakis, Dimitrios Georgios AU - Coulson, S. Neil AU - Sastry, Nishanth AU - Li, Xiancheng AU - Taylor, C. Stephanie J. AU - Griffiths, J. Chris AU - De Simoni, Anna PY - 2025/4/25 TI - Moderators? Experiences of the Safety and Effectiveness of Patient Engagement in an Asthma Online Health Community: Exploratory Qualitative Interview Study JO - J Med Internet Res SP - e58167 VL - 27 KW - asthma KW - online health communities KW - moderators KW - peer support KW - digital health KW - qualitative research KW - patient safety N2 - Background: Among 5.4 million people receiving treatment for asthma in the United Kingdom, more than 2 million experience suboptimal control, leading to the use of health care services and resulting costs as well as poorer quality of life. Online health communities (OHCs) are increasingly used as a source of lay health advice, providing opportunities for learning and mutual support and complementing information from ?official? health sources. While engagement with OHCs has the potential to improve self-management, concerns remain about the reliability and usefulness of the information posted. Professional moderation of such communities is essential for supporting sensitive patients, ensuring adherence to forum guidelines, and maintaining clinical safety. Objective: This study aims to examine the experiences of moderators in an asthma OHC, identifying challenges and possible areas to optimize the safety and effectiveness of patient engagement. Methods: All 6 current moderators of a nationwide charity-hosted OHC participated in in-depth, semistructured, audio-recorded, remote interviews. Audio recordings were transcribed verbatim and qualitatively analyzed using reflexive inductive thematic analysis. Results: The 6 moderators interviewed comprised 4 (67%) specialist respiratory nurses, 1 (17%) volunteer patient ambassador, and 1 (17%) customer support manager (all female, with average age 45, SD 10.5 y). In total, 5 (83%) moderators had at least a year?s experience of OHC moderation. Three main themes were generated from data analysis: moderation processes, challenges to effective moderation, and OHC effectiveness. The first theme focused on the different moderator roles and tasks undertaken, including the application of OHC guidelines in dealing with inappropriate content. The second theme covered difficult issues, such as mental health, and practical challenges, including lack of time and concerns about missing problematic posts. The third theme focused on the factors that made the OHC effective and increased its effectiveness, including keeping users safe, generating more OHC activity, encouraging discussion, and raising awareness of the OHC. We found a contradiction in how the moderators perceived the OHC?s effectiveness and their role in moderating it. While they expressed concerns about having insufficient time to moderate the OHC, they also felt that it was underused and would be more effective if it were busier or more active. Conclusions: Building on the challenges experienced by the moderators, several recommendations were put forward to optimize the safety and effectiveness of the asthma OHC. Moderators often work in isolation without external training or interaction with others. More research into OHC moderation is needed. A continuous professional development framework could improve moderation quality and user support, aligning with the evolving needs of these communities. These results can be relevant to national and international policy, attempting to enhance the safety of patients? engagement with OHCs. UR - https://www.jmir.org/2025/1/e58167 UR - http://dx.doi.org/10.2196/58167 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58167 ER - TY - JOUR AU - Mayor, Eric AU - Bietti, M. Lucas PY - 2025/4/25 TI - A Social Media Study of Portrayals of Bipolar Disorders on YouTube: Content and Thematic Analyses JO - J Med Internet Res SP - e67129 VL - 27 KW - bipolar disorder KW - YouTube KW - social media KW - content analysis KW - thematic analysis N2 - Background: Individuals with mental disorders frequently use YouTube to express themselves, reach an audience, or as a means of understanding their condition. Testimonies posted on YouTube provide longer and richer perspectives than the short posts found on other social media platforms. Research focusing on the depiction of mental disorders on YouTube is blossoming. Bipolar disorders (BDs) are disabling mood disorders. The diagnosis of any mental disorder, and more so BD, is often a life-changing event. However, no published study has investigated the portrayal of diagnoses of BD on YouTube. Objective: This study aims to investigate the portrayals of BDs on YouTube, focusing on the diagnosis narratives and their accompanying narrative context, in particular, reports of personal experiences and reactions. Methods: We performed a manual content analysis of 39 testimonies (women: n=24, 62%) depicting BDs and their diagnosis by individuals with BD. We also performed a thematic analysis of the corpus relying upon a deductive and inductive approach. Results: Our manual content analysis revealed that portrayals included the disclosure of diagnoses of BD-I (as per both coders? agreement: 10 testimonies) and BD-II (11 testimonies) to a similar extent. The reactions to the diagnosis were mostly negative (8 testimonies), followed by positive (5 testimonies), while fewer portrayals indicated a denial of the condition (4 testimonies). Several portrayals made mention of issues in the areas of money and accommodation (15 testimonies), profession and education (13 testimonies), and relationships (20 testimonies). Medication (31 testimonies) and psychotherapy (23 testimonies) were often mentioned as part of treatment for BD, most generally in positive terms. The 8 themes emerging from the thematic analysis were: ?reactions on diagnosis, treatment, and health care professionals? expertise,? ?trial and error in medication,? ?positive effects of BD,? ?disability, stigma, and shame,? ?loss,? ?family planning and genetics,? ?identity change (psychological and physical),? and ?human social relationships.? Conclusions: Overall, our results underline the complexity and richness of the depiction of the diagnosis of BD and its narrative context, and highlight the importance of the moment of the diagnosis, medication, and psychotherapy. Our study emphasizes the need for further exploration of the impact of social media on mental health awareness. UR - https://www.jmir.org/2025/1/e67129 UR - http://dx.doi.org/10.2196/67129 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/67129 ER - TY - JOUR AU - Jiang, Jiaqi AU - Li, Shanghao AU - Li, Xian AU - Xu, Yingxin AU - Zhao, Jian AU - An, Pengcheng PY - 2025/4/18 TI - Playful Antisedentary Interactions for Online Meeting Scenarios: A Research Through Design Approach JO - JMIR Serious Games SP - e62778 VL - 13 KW - gamification KW - sedentary behavior KW - videoconferencing KW - exertion games KW - embodied interaction KW - design research N2 - Background: Online meetings have become an integral part of daily life for many people. However, prolonged periods of sitting still in front of screens can lead to significant, long-term health risks. While previous studies have explored various interventions to address sedentary lifestyles, few have specifically focused on mitigating sedentary behavior during online meetings. Furthermore, design opportunities to address this issue in the context of online meetings remain underexplored. Objective: This study aims to investigate the design of effective antisedentary interactions for online meeting scenarios and understand user experiences with gamified bodily interactions as an antisedentary measure during online meetings. Methods: This study adopts a ?research through design? approach to develop and explore user experiences of gamified bodily interactions as interventions to mitigate sedentary behavior during online meetings. In collaboration with 11 users, we co-designed and iterated 3 prototypes, which led to the development of the Bodily Interaction Gamification towards Anti-sedentary Online Meeting Environments (BIG-AOME) framework. Using these prototypes, we conducted user studies with 3 groups totaling 15 participants. During co-design and evaluation, all group semistructured interviews were transcribed into written format and analyzed using a conventional qualitative content analysis method. Results: The findings demonstrate that gamified bodily interactions encourage users to engage in physical movement while reducing the awkwardness of doing so during online meetings. Seamless integration with meeting software and the inclusion of long-term reward mechanisms can further contribute to sustained use. In addition, such games can serve as online icebreakers or playful tools for decision-making. Drawing from 3 design prototypes, this study offers a comprehensive analysis of each design dimension within the BIG-AOME framework: bodily engagement, attention, bodily interplay, timeliness, and virtual and physical environments. Conclusions: Our research findings indicate that antisedentary bodily interactions designed for online meetings have the potential to mitigate sedentary behaviors while enhancing social connections. Furthermore, the BIG-AOME framework that we propose explores the design space for antisedentary physical interactions in the context of online meetings, detailing pertinent design choices and considerations. UR - https://games.jmir.org/2025/1/e62778 UR - http://dx.doi.org/10.2196/62778 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/62778 ER - TY - JOUR AU - Marian, Marian AU - Pérez, L. Ramona AU - Reed, Elizabeth AU - Hurst, Samantha AU - Lundgren, Rebecka AU - McClain, C. Amanda AU - Barker, M. Kathryn PY - 2025/4/17 TI - Exploring the Use of Social Media for Activism by Mexican Nongovernmental Organizations Using Posts From the 16 Days of Activism Against Gender-Based Violence Campaign: Thematic Content Analysis JO - JMIR Infodemiology SP - e67368 VL - 5 KW - gender-based violence KW - Mexico KW - hashtag activism KW - feminist social activism KW - hashtag feminism KW - Twitter KW - X KW - nongovernmental organization KW - social media N2 - Background: In the past decade, hashtag feminism has emerged in Mexico as a prevalent strategy to build social movements against gender-based violence (GBV). For example, during the global ?16 Days of Activism Against GBV? campaign held between November 25 and December 10 each year, Mexico-based nongovernmental organizations (NGOs) turn to X (formerly known as Twitter) to share messages. Despite this prevalence, there is limited research on the type of information shared by these NGO activists on social media and the public?s engagement with these messages. Objective: This study aims to explore the themes covered by Mexican NGOs on X and examine what types of messages related to GBV potentially resonated more with the public. Methods: We collated and reviewed posts (commonly known as tweets) published in Spanish on the platform X by Mexico-based NGOs between November 25 and December 10 of 2020, 2021, and 2022, a period when digital interactions increased during the COVID-19 pandemic. We then extracted posts using the following 4 hashtags: #16días, #16DiasdeActivismo, or #16DíasdeActivismo; #25N or #25Noviembre; #DiaNaranja or #DíaNaranja; and #PintaElMundoDeNaranja. We subsequently assessed the number of likes each post had and retained the top 200 posts from each year with the highest number of likes. We used the iterative content analysis process and the inductive 6-step qualitative thematic analysis method in NVivo software to code and analyze the final 600 posts. Results: Five themes emerged from the 16 Days of Activism Against GBV campaigns, covering both knowledge-sharing and activism-generating messages as follows: (1) activism and how to be an activist, (2) types of GBV most commonly highlighted in posts, (3) changing public discourse surrounding GBV, (4) GBV as a violation of human rights, and (5) the COVID-19 pandemic?s impact on GBV. Most of the messages on these posts exclusively mentioned women and younger girls, while a few included adolescents. Gaps in the representation of vulnerable populations were also found. Conclusions: The posts from this campaign that were highly liked by the public reflect some of the most significant societal issues currently present in the country. Our results could help guide further GBV campaigns. Still, further research related to hashtag feminism by Mexico-based NGOs on GBV is needed to understand the population that NGOs reach and how the messages shared on these campaigns translate into activism on online and offline social media platforms. UR - https://infodemiology.jmir.org/2025/1/e67368 UR - http://dx.doi.org/10.2196/67368 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/67368 ER - TY - JOUR AU - Karschuck, Philipp AU - Groeben, Christer AU - Koch, Rainer AU - Krones, Tanja AU - Neisius, Andreas AU - von Ahn, Sven AU - Klopf, Peter Christian AU - Weikert, Steffen AU - Siebels, Michael AU - Haseke, Nicolas AU - Weissflog, Christian AU - Baunacke, Martin AU - Thomas, Christian AU - Liske, Peter AU - Tosev, Georgi AU - Benusch, Thomas AU - Schostak, Martin AU - Stein, Joachim AU - Spiegelhalder, Philipp AU - Ihrig, Andreas AU - Huber, Johannes PY - 2025/4/7 TI - Urologists? Estimation of Online Support Group Utilization Behavior of Their Patients With Newly Diagnosed Nonmetastatic Prostate Cancer in Germany: Predefined Secondary Analysis of a Randomized Controlled Trial JO - J Med Internet Res SP - e56092 VL - 27 KW - peer support KW - prostate cancer KW - online support KW - health services research KW - randomized controlled trial KW - decision aid N2 - Background: Due to its high incidence, prostate cancer (PC) imposes a burden on Western societies. Individualized treatment decision for nonmetastatic PC (eg, surgery, radiation, focal therapy, active surveillance, watchful waiting) is challenging. The range of options might make affected persons seek peer-to-peer counseling. Besides traditional face-to-face support groups (F2FGs), online support groups (OSGs) became important, especially during COVID-19. Objective: This study aims to investigate utilization behavior and physician advice concerning F2FGs and OSGs for patients with newly diagnosed PC. We hypothesized greater importance of OSGs to support treatment decisions. We assumed that this form of peer-to-peer support is underestimated by the treating physicians. We also considered the effects of the COVID-19 pandemic. Methods: This was a secondary analysis of data from a randomized controlled trial comparing an online decision aid versus a printed brochure for patients with nonmetastatic PC. We investigated 687 patients from 116 urological practices throughout Germany before primary treatment. Of these, 308 were included before and 379 during the COVID-19 pandemic. At the 1-year follow-up visit, patients filled an online questionnaire about their use of traditional or online self-help, including consultation behaviors or attitudes concerning initial treatment decisions. We measured secondary outcomes with validated questionnaires such as Distress Thermometer and the Patient Health Questionnaire-4 items to assess distress, anxiety, and depression. Physicians were asked in a paper-based questionnaire whether patients had accessed peer-to-peer support. Group comparisons were made using chi-square or McNemar tests for nominal variables and 2-sided t tests for ordinally scaled data. Results: Before COVID-19, 2.3% (7/308) of the patients attended an F2FG versus none thereafter. The frequency of OSG use did not change significantly: OSGs were used by 24.7% (76/308) and 23.5% (89/308) of the patients before and during COVID-19, respectively. OSG users had higher levels of anxiety and depression; 38% (46/121) reported OSG as helpful for decision-making. Although 4% (19/477) of OSG nonusers regretted treatment decisions, only 0.7% (1/153) of OSG users did (P=.03). More users than nonusers reported that OSGs were mentioned by physicians (P<.001). Patients and physicians agreed that F2FGs and OSGs were not mentioned in conversations or visited by patients. For 86% (6/7) of the patients, the physician was not aware of F2FG attendance. Physicians underestimated OSG usage by 2.6% (18/687) versus 24% (165/687) of actual use (P<.001). Conclusions: Physicians are more aware of F2FGs than OSGs. Before COVID-19, F2FGs played a minor role. One out of 4 patients used OSGs. One-third considered them helpful for treatment decision-making. OSG use rarely affects the final treatment decision. Urologists significantly underestimate OSG use by their patients. Peer-to-peer support is more likely to be received by patients with anxiety and depression. Comparative interventional trials are needed to recommend peer-to-peer interventions for suitable patients. Trial Registration: German Clinical Trials Register DRKS-ID DRKS00014627; https://drks.de/search/en/trial/DRKS00014627 UR - https://www.jmir.org/2025/1/e56092 UR - http://dx.doi.org/10.2196/56092 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/56092 ER - TY - JOUR AU - Wight, Lisa AU - Tenove, Chris AU - Hirani, Saima AU - Tworek, Heidi PY - 2025/4/2 TI - Mental Health and Coping Strategies of Health Communicators Who Faced Online Abuse During the COVID-19 Pandemic: Mixed Methods Study JO - JMIR Infodemiology SP - e68483 VL - 5 KW - mental health KW - online harassment KW - online abuse KW - coping strategies KW - resilience KW - social media KW - online advocacy KW - public health communication KW - health communication N2 - Background: During the COVID-19 pandemic, health experts used social media platforms to share information and advocate for policies. Many of them faced online abuse, which some reported took a toll on their mental health and well-being. Variation in the impacts of online abuse on mental health, well-being, and professional efficacy suggest that health communicators may differ in their coping strategies and ultimately their resilience to such abuse. Objective: We aimed to explore the impacts of online abuse on health communicators? mental health and well-being as well as their emotion- and problem-focused coping strategies. Methods: We recruited health communicators (public health officials, medical practitioners, and university-based researchers) in Canada who engaged in professional online communication during the COVID-19 pandemic. In phase 1, semistructured interviews were conducted with 35 health communicators. In phase 2, online questionnaires were completed by 34 individuals before participating in workshops. Purposive recruitment resulted in significant inclusion of those who self-identified as racialized or women. Interview and workshop data were subjected to inductive and deductive coding techniques to generate themes. Descriptive statistics were calculated for selected questionnaire questions. Results: In total, 94% (33/35) of interviewees and 82% (28/34) of questionnaire respondents reported experiencing online abuse during the study period (2020-2022). Most health communicators mentioned facing an emotional and psychological toll, including symptoms of depression and anxiety. Racialized and women health communicators faced abuse that emphasized their ethnicity, gender identity, and physical appearance. Health communicators? most common emotion-focused coping strategies were withdrawing from social media platforms, avoiding social media platforms altogether, and accepting online abuse as unavoidable. Common problem-focused coping strategies included blocking or unfriending hostile accounts, changing online behavior, formal help-seeking, and seeking peer support. Due to the impacts of online abuse on participants? mental health and well-being, 41% (14/34) of the questionnaire respondents seriously contemplated quitting health communication, while 53% (18/34) reduced or suspended their online presence. Our findings suggest that health communicators who used problem-focused coping strategies were more likely to remain active online, demonstrating significant professional resilience. Conclusions: Although health communicators in our study implemented various emotion- and problem-focused coping strategies, they still faced challenges in dealing with the impacts of online abuse. Our findings reveal the limitations of individual coping strategies, suggesting the need for effective formal organizational policies to support those who receive online abuse and to sanction those who perpetrate it. Organizational policies could improve long-term outcomes for health communicators? mental health and well-being by mitigating online abuse and supporting its targets. Such policies would bolster professional resilience, ensuring that important health information can still reach the public and is not silenced by online abuse. More research is needed to determine whether gender, race, or other factors shape coping strategies and their effectiveness. UR - https://infodemiology.jmir.org/2025/1/e68483 UR - http://dx.doi.org/10.2196/68483 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/68483 ER - TY - JOUR AU - Morena, Nina AU - Htite, Dimya Elly AU - Ahisar, Yitzchok AU - Hayman, Victoria AU - Rentschler, A. Carrie AU - Meguerditchian, N. Ari PY - 2025/3/31 TI - Breast Cancer Vlogs on YouTube: Descriptive and Content Analyses JO - JMIR Infodemiology SP - e66812 VL - 5 KW - breast cancer vlog KW - YouTube KW - social media KW - experience KW - video KW - content analysis KW - breast KW - cancer KW - women KW - oncology KW - descriptive analysis N2 - Background: Many women with breast cancer document their experiences in YouTube vlogs, which may serve as peer-to-peer and community support. Objective: This study aimed to determine (1) the forms of content about breast cancer that tend to be discussed in vlogs, (2) the reasons why women choose to vlog their breast cancer experiences, and (3) the potential for breast cancer vlogs to serve as an alternative or complement to peer-to-peer support as well as a site of digital community overall. Methods: YouTube was searched in incognito mode in November 2023 using the search terms ?breast cancer vlog.? A maximum of 10 videos/creator were included based on viewership and date created. Video characteristics collected included title; length; number of views, likes, comments; and playlist inclusion. Videos were assessed for sponsorship; presence of explanation and discussion on breast cancer; type of content; and themes. Creator characteristics included age, location, and engagement approaches. Descriptive and content analyses were performed to analyze video content and potential areas where peer-to-peer support may be provided. Results: Ninety vlogs by 13 creators were included, all from personal accounts. The mean (SD) video length, number of views, and number of comments were 21.4 (9.1) minutes, 266,780 (534,465), and 1485 (3422), respectively. Of the 90 videos, 35 (39%) included hashtags, and 11 (12%) included paid sponsorships. The most common filming location was the home (87/90; 97%), followed by the hospital (28/90; 31%) and car (19/90; 21%). Home vlogs were most often set in the living room (43/90; 44%), bedroom (32/90; 33%), or kitchen (20/90; 21%). Thirty-four of 60 videos (57%) included treatment visuals and physical findings. Creators addressed motivation for vlogging in 44/90 videos (49%); the two most common reasons were wanting to build a community and helping others. In 42/90 videos (47%), creators explicitly expressed emotion. Most common themes were treatment (77/90; 86%), mental health (73/90; 81%), adverse effects (65/90; 72%), appearance (57/90; 63%), and family relationships (33/90; 37%). Patient-directed advice was offered in 52/90 videos (58%), mostly on treatment-related issues. In 51/90 videos (57%), creators provided explicit treatment definitions. Chemotherapy was discussed in 63/90 videos (70%); surgery in 52/90 (58%), primarily mastectomy; radiation in 27/90 (30%); and general adverse effects in 64/90 (71%). Twenty-two of 90 videos (24%) were about a new diagnosis. When mentioned (40/90; 44%), the most common creator location was the United States. When mentioned (27/90; 30%), the most common age was 20?29 years. Conclusions: The dedication to building community support by vlog creators, and the personal nature of their storytelling, may make vlogs a potential resource for peer-to-peer support. UR - https://infodemiology.jmir.org/2025/1/e66812 UR - http://dx.doi.org/10.2196/66812 ID - info:doi/10.2196/66812 ER - TY - JOUR AU - Bologna, Federica AU - Thalken, Rosamond AU - Pepin, Kristen AU - Wilkens, Matthew PY - 2025/3/31 TI - Endometriosis Communities on Reddit: Quantitative Analysis JO - J Med Internet Res SP - e57987 VL - 27 KW - online health communities KW - patient-centered care KW - chronic disease KW - internet KW - consumer health information KW - self-help groups KW - community networks KW - information science KW - social support N2 - Background: Endometriosis is a chronic condition that affects 10% of the people with a uterus. Due to the complex social and psychological impacts caused by this condition, people with endometriosis often turn to online health communities (OHCs) for support. Objective: Prior work identifies a lack of large-scale analyses of the experiences of patients with endometriosis and of OHCs. This study aims to fill this gap by investigating aspects of the condition and aggregate user needs that emerge from 2 endometriosis OHCs, r/Endo and r/endometriosis. Methods: We used latent Dirichlet allocation topic modeling, an unsupervised machine learning method, to extract the subject matter (?topic?) of >30,000 posts and >300,000 comments. In addition to latent Dirichlet allocation, we leveraged supervised classification. Specifically, we fine-tuned a series of the DistilBERT models to identify the people and relationships (personas) a post mentions as well as the type of support that the post seeks (intent). Combining the results of these 2 methods, we identified associations between a post?s topic, the personas mentioned, and the post?s intent. Results: The most discussed topics in posts were medical stories, medical appointments, sharing symptoms, menstruation, and empathy. Through the combination of the results from topic modeling and supervised classification, we found that when discussing medical appointments, users were more likely to mention the endometriosis OHCs than medical professionals. Medical professional was the least likely of any persona to be associated with empathy. Posts that mentioned partner or family were likely to discuss topics from the life issues category, particularly fertility. Users sought experiential knowledge regarding treatments and health care processes, and they also wished to vent and establish emotional connections about the life-altering aspects of the condition. Conclusions: We conclude that members of the OHCs need greater empathy within clinical settings, easier access to appointments, more information on care pathways, and more support for their loved ones. Endometriosis OHCs currently fulfill some of these needs as they provide members with a space where they can receive validation, discuss care pathways, and learn to manage symptoms. This study demonstrates the value of quantitative analyses of OHCs. Computational analyses can support and extend findings from small-scale studies about patient experiences and provide insights into hard-to-reach groups. Finally, we provide recommendations for clinical practice and medical training programs. UR - https://www.jmir.org/2025/1/e57987 UR - http://dx.doi.org/10.2196/57987 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57987 ER - TY - JOUR AU - Wang, Xiao AU - Xiao, Yuxue AU - Nam, Sujin AU - Zhong, Ting AU - Tang, Dongyan AU - Li, Cheung William Ho AU - Song, Peige AU - Xia, Wei PY - 2025/3/27 TI - Use of Mukbang in Health Promotion: Scoping Review JO - J Med Internet Res SP - e56147 VL - 27 KW - mukbang KW - health promotion KW - eating behaviors KW - appetite KW - scoping review N2 - Background: Mukbang is a recent internet phenomenon in which anchors publicly record and show their eating through short video platforms. Researchers reported a tangible impact of mukbang on the psychological and physical health, appetite, and eating behavior of the public, it is critical to obtain clear and comprehensive insights concerning the use of mukbang to promote the viewers? appetite, eating behaviors, and health to identify directions for future work. Objective: This scoping review aims to comprehensively outline the current evidence regarding the impact of mukbang consumption on dietary behaviors, appetite regulation, flavor perception, and physical and psychological well-being. Specifically, we conducted an analysis of public perceptions and attitudes toward mukbang while summarizing the reciprocal influence it has on health promotion. Methods: This study was conducted as a scoping review following the Joanna Briggs Institute guideline and the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist. We comprehensively searched 8 electronic databases in Chinese, English, and Korean languages. We also searched gray literature sources like Google Scholar and ProQuest. We used a data extraction chart to extract information relevant to the impact of mukbang on health. The extracted data were qualitatively analyzed to form different themes related to health, categorizing and integrating the results based on the type of study (qualitative, observational, and experimental). Results: This scoping review finally included 53 studies; the annual distribution exhibited a consistent upward trend across all categories since their initial publication in 2017. Based on the results of the analysis, we have summarized 4 themes, which showed that mukbang may have positive effects on viewers? appetite, food choices, and weight control; it can also meet the psychological needs of viewers and provide digital companionship and happiness. However, excessive viewing may also be harmful to viewer?s health, which has also caused health concerns for some viewers. Conclusions: This study conducted a comprehensive search, screening, and synthesis of existing studies focusing on mukbang and health across various languages and varying levels of quality, which has presented the analytical evidence of the relationship between mukbang and dietary behaviors, appetite, flavor perception, and health. According to the results, future research could consider analyzing the beneficial and harmful factors of mukbang, thereby further optimizing the existing mukbang videos accordingly to explore the potential of using mukbang for health intervention or promotion, so as to improve or customize the content of mukbang based on this scoping review, maximize the appetite and health promotion effects of mukbang videos. Trial Registration: INPLASY INPLASY2022120109; https://inplasy.com/inplasy-2022-12-0109/ UR - https://www.jmir.org/2025/1/e56147 UR - http://dx.doi.org/10.2196/56147 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/56147 ER - TY - JOUR AU - Chen, T. Annie AU - Wang, C. Lexie AU - Johnny, Shana AU - Wong, H. Sharon AU - Chaliparambil, K. Rahul AU - Conway, Mike AU - Glass, E. Joseph PY - 2025/3/26 TI - Stigma and Behavior Change Techniques in Substance Use Recovery: Qualitative Study of Social Media Narratives JO - JMIR Form Res SP - e57468 VL - 9 KW - stigma KW - substance use KW - transtheoretical model KW - behavior change techniques KW - social media N2 - Background: Existing literature shows that persons with substance use disorder (SUD) experience different stages of readiness to reduce or abstain from substance use, and tailoring intervention change strategies to these stages may facilitate recovery. Moreover, stigma may serve as a barrier to recovery by preventing persons with SUDs from seeking treatment. In recent years, the behavior change technique (BCT) taxonomy has increasingly become useful for identifying potential efficacious intervention components; however, prior literature has not addressed the extent to which these techniques may naturally be used to recover from substance use, and knowledge of this may be useful in the design of future interventions. Objective: We take a three-step approach to identifying strategies to facilitate substance use recovery: (1) characterizing the extent to which stages of change are expressed in social media data, (2) identifying BCTs used by persons at different stages of change, and (3) exploring the role that stigma plays in recovery journeys. Methods: We collected discussion posts from Reddit, a popular social networking site, and identified subreddits or discussion forums about 3 substances (alcohol, cannabis, and opioids). We then performed qualitative data analysis using a hybrid inductive-deductive method to identify the stages of change in social media authors? recovery journeys, the techniques that social media content authors used as they sought to quit substance use, and the role that stigma played in social media authors? recovery journeys. Results: We examined 748 posts pertaining to 3 substances: alcohol (n=316, 42.2%), cannabis (n=335, 44.8%), and opioids (n=135, 18%). Social media content representing the different stages of change was observed, with the majority (472/748, 63.1%) of narratives representing the action stage. In total, 11 categories of BCTs were identified. There were similarities in BCT use across precontemplation, contemplation, and preparation stages, with social support seeking and awareness of natural consequences being the most common. As people sought to quit or reduce their use of substances (action stage), we observed a variety of BCTs, such as the repetition and substitution of healthful behaviors and monitoring and receiving feedback on their own behavior. In the maintenance stage, reports of diverse BCTs continue to be frequent, but offers of social support also become more common than in previous stages. Stigma was present throughout all stages. We present 5 major themes pertaining to the manifestation of stigma. Conclusions: Patterns of BCT use and stigmatizing experiences are frequently discussed in social media, which can be leveraged to better understand the natural course of recovery from SUD and how interventions might facilitate recovery from substance use. It may be important to incorporate stigma reduction across all stages of the recovery journey. UR - https://formative.jmir.org/2025/1/e57468 UR - http://dx.doi.org/10.2196/57468 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57468 ER - TY - JOUR AU - Hood, Carol AU - Hunt, Sally AU - Metse, P. Alexandra AU - Hodder, K. Rebecca AU - Colyvas, Kim AU - Sheather-Reid, Rachel AU - Duerden, David AU - Bowman, Jenny PY - 2025/3/26 TI - Use of e-Mental Health Tools for Suicide Prevention in Clinical Practice by Mental Health Professionals in NSW, Australia: Cross-Sectional Survey JO - J Med Internet Res SP - e64746 VL - 27 KW - suicide prevention KW - digital mental health KW - mental health professionals KW - peer support KW - internet KW - mobile apps KW - clinical practice KW - cross-sectional survey KW - Australia KW - e-mental health tools N2 - Background: Suicide is a significant global health concern. In the context of increased demand for mental health services and workforce shortages, exacerbated by the COVID-19 pandemic, electronic mental health (eMH) tools represent a promising means of augmenting mental health care generally and for suicide prevention specifically. A significant research gap exists however with respect to the use and uptake of eMH tools, especially electronic mental health tools for suicide prevention (eMH-SP). Objective: This study aimed to investigate the use of eMH tools by Australian mental health professionals, both in general and with respect to suicide prevention specifically, examining changes in use since COVID-19. Further, it explored factors associated with frequent use of eMH-SP, including sociodemographic and professional characteristics. Methods: A web-based cross-sectional survey was conducted across 15 local health districts (LHDs) in New South Wales, Australia, from May 2022 to July 2023. The sample was drawn from over 10,000 mental health professionals working in government services statewide. The survey explored the use of electronic mental health tools for general mental health issues (eMH-gen) and eMH-SP, explored the changes in the use of both since COVID-19, and used multivariable logistic regression to identify factors associated with the current use of eMH-SP. Results: Among 469 participants, increased use since COVID-19 was reported by over half (247/469, 52.7%) for eMH-gen, and by approximately one-third (141/386, 36.6%) for eMH-SP. The proportion reporting frequent use increased significantly from before to after COVID-19 for both eMH-gen (243/469, 51.8% to 283/469, 60.3%; P<.001) and eMH-SP (152/386, 39.4% to 170/385, 44.2%; P=.01). Since COVID-19, the most frequently used types of eMH tools for eMH-gen and eMH-SP, respectively, were information sites (231/469, 49.3% and 130/385, 33.8%), phone/online counseling (173/469, 36.9% and 130/385, 33.8%), and apps (145/469, 30.9% and 107/385, 27.8%). Professionals more likely to use eMH-SP frequently were females (odds ratio [OR] 3.32, 95% CI 1.88-5.87; P<.001) compared with males; peer workers (OR 2.17, 95% CI 1.0-4.71; P<.001) compared with nurses; those located in regional/rural LHDs (OR 1.65, 95% CI 1.04-2.61; P=.03) compared with metropolitan LHDs; and those practicing in emergency health care settings (OR 8.31, 95% CI 2.17-31.75; P=.03) compared with inpatient settings. Conclusions: The study?s findings highlight the increasing adoption of eMH tools and delivery of remote care by mental health professionals and provide valuable new insights into sociodemographic factors associated with the use of eMH for suicide prevention specifically. Continued research on the role eMH is playing is essential for guiding policy, optimizing resources, and enhancing mental health care and suicide prevention efforts. UR - https://www.jmir.org/2025/1/e64746 UR - http://dx.doi.org/10.2196/64746 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/64746 ER - TY - JOUR AU - Tistad, Malin AU - Hultman, Lill AU - Wohlin Wottrich, Annica AU - von Koch, Lena PY - 2025/3/25 TI - The Lived Experience of Participating in Online Peer-To-Peer Groups After Acquired Brain Injury: Phenomenological Study JO - J Med Internet Res SP - e67658 VL - 27 KW - compassion KW - experiential knowledge KW - fatigue KW - self-compassion KW - stroke KW - social media KW - meaning KW - interview KW - normalization N2 - Background: Stroke and other acquired brain injuries (ABIs) can present challenging experiences for individuals, both in recovery of functions affected by visible or invisible impairments and in learning to live with the new situation. Research has shown that sharing experiences face-to-face in peer groups can be beneficial during recovery. However, there is limited knowledge about the lived experiences of people with ABI who participate in online peer-to-peer groups. Objective: The aim of our study was to explore the lived experiences of participating in online peer-to-peer groups for people with ABI, where participants themselves set the agenda. Methods: Members of 2 Facebook groups (FBGs) for people with ABI were invited to participate in this study, and 20 individuals were included (14 women and 6 men; age range 24-74 years). One FBG focused on stroke and the other on fatigue caused by ABI. One group was private, and the other group was public. Data were collected through semistructured interviews, in which participants were encouraged to describe their experiences of engaging in FBGs in detail. The interviews were conducted over telephone or Zoom and digitally recorded. The audio recordings were then transcribed verbatim, resulting in 224 pages of text, and analyzed using the empirical phenomenological psychological method. Results: The analysis presented a common meaning structure with 1 main characteristic that is, ?validating self,? common for all 20 participants, and 3 subcharacteristics, that is, ?learning?having one?s own experiences confirmed,? ?adjusting self?building competence and self-compassion,? and ?supporting others?becoming a valued lived-experience expert/authority.? Together, the subcharacteristics reflected a process of validating self from newcomer to lived-experience expert or authority. In this process, members of FBGs moved from being newcomers with pronounced needs for support and to learn and to have their experiences confirmed by others with similar experiences. Thus, participants were building competence and developing self-compassion. Gradually, they assumed the role of advisors, mentors, or coaches, acknowledging their experiences and competence as valuable to others, thereby validating themselves as compassionate lived-experience experts or authorities in supporting others. Conclusions: Participation in online peer-to-peer groups can offer unique opportunities for individuals with ABI to validate self through processes that involve learning, developing self-compassion and compassion for others, and offering support to others with similar experiences. Given that rehabilitation after an ABI is often of limited duration and that positive experiences can be achieved over time through involvement in digital peer-to-peer support, health care professionals should assist patients by providing information and directing them to digital networks for people with ABI. However, when recommending the use of online peer-to-peer support, impairments and insufficient digital competence that may complicate or prevent the use of social media should be assessed and support provided when relevant. UR - https://www.jmir.org/2025/1/e67658 UR - http://dx.doi.org/10.2196/67658 UR - http://www.ncbi.nlm.nih.gov/pubmed/40131323 ID - info:doi/10.2196/67658 ER - TY - JOUR AU - Watkins, Lea Shannon AU - Snodgrass, Katherine AU - Fahrion, Lexi AU - Shaw, Emily PY - 2025/3/20 TI - Contextualizing Changes in e-Cigarette Use During the Early COVID-19 Pandemic and Accompanying Infodemic (?So Much Contradictory Evidence?): Qualitative Document Analysis of Reddit Forums JO - J Med Internet Res SP - e66010 VL - 27 KW - vaping KW - nicotine KW - tobacco KW - health communication KW - social media KW - new media N2 - Background: Understanding how social media platforms facilitate information exchange and influence behavior during health crises can enhance public health responses during times of uncertainty. While some risk factors for COVID-19 susceptibility and severity (eg, old age) were clear, whether e-cigarette use increased risk was not clear. People who used e-cigarettes had to navigate both the COVID-19 infodemic and a conflicting, politicized, and changing information environment about the interaction between COVID-19 and e-cigarette use. Objective: This study aims to characterize and contextualize e-cigarette?related behavior changes during the early COVID-19 pandemic and illuminate the role that social media played in decision-making. Methods: We conducted a qualitative analysis of COVID-19?related e-cigarette discussions on 3 Reddit forums about e-cigarettes. We collected 189 relevant discussion threads made in the first 6 months of the pandemic (collected from June 27, 2020, to July 3, 2020). Threads included 3155 total comments (mean 17 comments) from approximately 1200 unique Redditors. We developed and applied emergent codes related to e-cigarette perceptions and behaviors (eg, the role of nicotine in COVID-19 and do-it-yourself narratives) and web-based community interactions (eg, advice), identified thematic patterns across codes, and developed a model to synthesize the socioecological context of e-cigarette behaviors. Results: e-Cigarette subreddits provided a platform for Redditors to discuss perceptions and experiences with e-cigarettes, make sense of information, and provide emotional support. Discussions reflected an array of e-cigarette?related behavioral responses, including increases and decreases in use intensity, changes in purchasing practices (eg, stockpiling), and changes in vaping practices (eg, reusing disposable pods). This study presented a theoretically and empirically informed model of how circumstances created by the pandemic (eg, changes in activity space and product shortages) compelled behavior changes. Redditors drew from their existing perceptions, intentions, and experiences with nicotine and tobacco products; their personal pandemic experiences; and their participation on Reddit to decide whether and how to change their e-cigarette behaviors during the early pandemic. Forums reflected uncertainty, stress, and debate about the rapidly evolving and complicated public health information. Consumption and discussion of media (eg, news articles and peer-reviewed publications) on Reddit informed e-cigarette perceptions and behaviors. Decisions were complicated by distrust of the media. Conclusions: Variations in individual traits and environmental circumstances during the early COVID-19 pandemic provide context for why there was no unified direction of e-cigarette behavior change during this period. Information and discussion on Reddit also informed risk perceptions and decisions during the pandemic. Social media is an effective and important place to communicate public health information, particularly during crisis or disaster situations. Moving forward, transparent, accurate, and specific message development should consider the stress, struggles, and stigma of people who use e-cigarettes and address the roles mistrust and misinformation play in decisions. UR - https://www.jmir.org/2025/1/e66010 UR - http://dx.doi.org/10.2196/66010 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/66010 ER - TY - JOUR AU - Zhao, Xiyu AU - Yang, Victor AU - Menta, Arjun AU - Blum, Jacob AU - Ranasinghe, Padmini PY - 2025/3/20 TI - Exploring the Use of Social Media for Medical Problem Solving by Analyzing the Subreddit r/medical_advice: Quantitative Analysis JO - JMIR Infodemiology SP - e56116 VL - 5 KW - online health information KW - medical advice KW - Reddit KW - r/medical_advice KW - health information?seeking behavior KW - user-generated content KW - subreddits KW - patient education KW - virtual environments KW - information quality KW - social media KW - medical problem KW - quantitative analyses KW - cross-sectional study KW - user interactions KW - online health KW - decision-making KW - social news KW - health information N2 - Background: The advent of the internet has transformed the landscape of health information acquisition and sharing. Reddit has become a hub for such activities, such as the subreddit r/medical_advice, affecting patients? knowledge and decision-making. While the popularity of these platforms is recognized, research into the interactions and content within these communities remains sparse. Understanding the dynamics of these platforms is crucial for improving online health information quality. Objective: This study aims to quantitatively analyze the subreddit r/medical_advice to characterize the medical questions posed and the demographics of individuals providing answers. Insights into the subreddit?s user engagement, information-seeking behavior, and the quality of shared information will contribute to the existing body of literature on health information seeking in the digital era. Methods: A cross-sectional study was conducted, examining all posts and top comments from r/medical_advice since its creation on October 1, 2011. Data were collected on March 2, 2023, from pushhift.io, and the analysis included post and author flairs, scores, and engagement metrics. Statistical analyses were performed using RStudio and GraphPad Prism 9.0. Results: From October 2011 to March 2023, a total of 201,680 posts and 721,882 comments were analyzed. After excluding autogenerated posts and comments, 194,678 posts and 528,383 comments remained for analysis. A total of 41% (77,529/194,678) of posts had no user flairs, while only 0.1% (108/194,678) of posts were made by verified medical professionals. The average engagement per post was a score of 2 (SD 7.03) and 3.32 (SD 4.89) comments. In period 2, urgent questions and those with level-10 pain reported higher engagement, with significant differences in scores and comments based on flair type (P<.001). Period 3 saw the highest engagement in posts related to pregnancy and the lowest in posts about bones, joints, or ligaments. Media inclusion significantly increased engagement, with video posts receiving the highest interaction (P<.001). Conclusions: The study reveals a significant engagement with r/medical_advice, with user interactions influenced by the type of query and the inclusion of visual media. High engagement with posts about pregnancy and urgent medical queries reflects a focused public interest and the subreddit?s role as a preliminary health information resource. The predominance of nonverified medical professionals providing information highlights a shift toward community-based knowledge exchange, though it raises questions about the reliability of the information. Future research should explore cross-platform behaviors and the impact of misinformation on public health. Effective moderation and the involvement of verified medical professionals are recommended to enhance the subreddit?s role as a reliable health information resource. UR - https://infodemiology.jmir.org/2025/1/e56116 UR - http://dx.doi.org/10.2196/56116 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/56116 ER - TY - JOUR AU - Parveen, Sana AU - Pereira, Garcia Agustin AU - Garzon-Orjuela, Nathaly AU - McHugh, Patricia AU - Surendran, Aswathi AU - Vornhagen, Heike AU - Vellinga, Akke PY - 2025/3/19 TI - COVID-19 Public Health Communication on X (Formerly Twitter): Cross-Sectional Study of Message Type, Sentiment, and Source JO - JMIR Form Res SP - e59687 VL - 9 KW - public health communication KW - surveillance KW - COVID-19 KW - SARS-CoV-2 KW - coronavirus KW - respiratory KW - infectious KW - pulmonary KW - pandemic KW - public health messaging KW - healthcare information KW - social media KW - tweets KW - text mining KW - data mining KW - social marketing KW - infoveillance KW - intervention planning N2 - Background: Social media can be used to quickly disseminate focused public health messages, increasing message reach and interaction with the public. Social media can also be an indicator of people?s emotions and concerns. Social media data text mining can be used for disease forecasting and understanding public awareness of health-related concerns. Limited studies explore the impact of type, sentiment and source of tweets on engagement. Thus, it is crucial to research how the general public reacts to various kinds of messages from different sources. Objective: The objective of this paper was to determine the association between message type, user (source) and sentiment of tweets and public engagement during the COVID-19 pandemic. Methods: For this study, 867,485 tweets were extracted from January 1, 2020 to March 31, 2022 from Ireland and the United Kingdom. A 4-step analytical process was undertaken, encompassing sentiment analysis, bio-classification (user), message classification and statistical analysis. A combination of manual content analysis with abductive coding and machine learning models were used to categorize sentiment, user category and message type for every tweet. A zero-inflated negative binomial model was applied to explore the most engaging content mix. Results: Our analysis resulted in 12 user categories, 6 message categories, and 3 sentiment classes. Personal stories and positive messages have the most engagement, even though not for every user group; known persons and influencers have the most engagement with humorous tweets. Health professionals receive more engagement with advocacy, personal stories/statements and humor-based tweets. Health institutes observe higher engagement with advocacy, personal stories/statements, and tweets with a positive sentiment. Personal stories/statements are not the most often tweeted category (22%) but have the highest engagement (27%). Messages centered on shock/disgust/fear-based (32%) have a 21% engagement. The frequency of informative/educational communications is high (33%) and their engagement is 16%. Advocacy message (8%) receive 9% engagement. Humor and opportunistic messages have engagements of 4% and 0.5% and low frequenciesof 5% and 1%, respectively. This study suggests the optimum mix of message type and sentiment that each user category should use to get more engagement. Conclusions: This study provides comprehensive insight into Twitter (rebranded as X in 2023) users? responses toward various message type and sources. Our study shows that audience engages with personal stories and positive messages the most. Our findings provide valuable guidance for social media-based public health campaigns in developing messages for maximum engagement. UR - https://formative.jmir.org/2025/1/e59687 UR - http://dx.doi.org/10.2196/59687 ID - info:doi/10.2196/59687 ER - TY - JOUR AU - Kramer, L. Melissa AU - Polo, Medina Jose AU - Kumar, Nishant AU - Mulgirigama, Aruni AU - Benkiran, Amina PY - 2025/3/11 TI - Living With and Managing Uncomplicated Urinary Tract Infection: Mixed Methods Analysis of Patient Insights From Social Media JO - J Med Internet Res SP - e58882 VL - 27 KW - acute cystitis KW - bladder infection KW - HCP interactions KW - urology KW - patient experience KW - patient insights KW - social media KW - uncomplicated urinary tract infection KW - urinary tract infection KW - urinary KW - women KW - quality of life KW - disease management KW - cystitis KW - healthcare professional KW - self-management KW - patient behavior KW - UTI N2 - Background: Uncomplicated urinary tract infections (uUTIs) affect more than half of women in their lifetime and can impact on quality of life. We analyzed social media posts discussing uUTIs to gather insights into the patient experience, including aspects of their disease management journey and associated opinions and concerns. Objective: This study aims to gather patient experience insights by analyzing social media posts that discussed uUTI. Methods: A search string (?urinary tract infection? [UTI] or ?bladder infection? or ?cystitis? or ?UTI? not ?interstitial cystitis?) was used to identify posts from public blogs and patient forums (June 2021 to June 2023). Posts were excluded if they were not written in English or discussed complicated UTI (posts that mentioned ?pregnancy? or ?pregnant? or ?trimester? or ?catheter? or ?interstitial?). Posts were limited to publicly available sources and anonymized. The primary objective was to gather patient perspectives on key elements of the uUTI experience, including health care professional (HCP) interactions, diagnosis, treatment, and recurrence. Results: In total, more than 42,000 unique posts were identified (mostly from reddit.com; 29,506/42,265, 70%) and >3600 posts were analyzed. Posts were most commonly from users in the United States (6707/11,180, 60%), the United Kingdom (2261/11,180, 20%), Canada (509/11,180, 5%), Germany (356/11,180, 3%), or India (320/11,180, 3%). Six main themes were identified: symptom awareness and information seeking, HCP interactions, diagnosis and management challenges, management with antibiotics, self-management, and challenges with recurrent UTI. Most posts highlighted the importance of seeking professional medical advice, while some patients raised concerns regarding their HCP interactions and lack of shared decision-making. Patients searched for advice and guidance on the web prior to consulting an HCP, described their symptoms, and discussed lifestyle adjustments. Most patients tried self-management and shared their experiences with nonprescribed treatment options. There was general agreement among posts that antibiotics are necessary to cure UTIs and prevent associated complications. Conclusions: Social media posts provide valuable insight into the experiences and opinions of patients with uUTIs in Canada, Germany, India, the United Kingdom, and the United States. The insights from this study provide a more complete picture of patient behaviors and highlight the potential for HCP and patient education, as well as better communication through shared decision-making to improve care. UR - https://www.jmir.org/2025/1/e58882 UR - http://dx.doi.org/10.2196/58882 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58882 ER - TY - JOUR AU - Groninger, Hunter AU - Arem, Hannah AU - Ayangma, Lylian AU - Gong, Lisa AU - Zhou, Eric AU - Greenberg, Daniel PY - 2025/3/10 TI - Development of a Voice-Activated Virtual Assistant to Improve Insomnia Among Young Adult Cancer Survivors: Mixed Methods Feasibility and Acceptability Study JO - JMIR Form Res SP - e64869 VL - 9 KW - cancer KW - survivor KW - insomnia KW - cognitive behavioral therapy KW - technology KW - app KW - oncology KW - mobile health KW - artificial intelligence KW - young adults KW - sleep KW - mHealth KW - CBT KW - voice-activated virtual assistant KW - virtual assistants KW - focus group KW - qualitative research N2 - Background: Up to 75% of young adult cancer survivors (YACS) experience chronic insomnia, negatively affecting physical and emotional health and overall quality of life. Cognitive behavioral therapy for insomnia (CBT-I) is a gold-standard intervention to address insomnia. To improve CBT-I access and treatment adherence, screen-based digital CBT-I platforms have been developed. However, even with these digital products, widespread uptake of CBT-I remains limited, and new strategies for CBT-I delivery are warranted. Objective: The objective of this study is to understand how YACS experience insomnia and how they might incorporate technology-delivered CBT-I into a daily routine and test the feasibility and acceptability of a novel screen-free voice-activated virtual assistant?delivered CBT-I prototype. Methods: Eligible participants?ages 18-39, living with a history of cancer (any type, any stage), self-reporting on average less sleep than National Sleep Foundation recommendations, and English-speaking?were recruited from a major urban cancer center, 2 regional oncology clinics, and 2 cancer survivorship support groups. We conducted 4 focus groups to understand the YACS experience of insomnia, their routine use of technology at home, particularly voice-activated virtual assistants such as Amazon Alexa, and input on how CBT-I might be delivered at home through a smart speaker system. We developed a prototype device to deliver key elements of CBT-I at home along with circadian lighting and monitoring of post-bedtime device use, collected YACS user perspectives on this prototype, and then conducted a single-arm feasibility and acceptability study. Results: In total, 26 YACS (6-7 participants per group) experiencing insomnia participated in focus groups to share experiences of insomnia during cancer survivorship and to provide input regarding a CBT-I prototype. Common triggers of insomnia included worry about disease management and progression, disease-related pain and other symptoms, choices regarding personal device use, and worry about the impact of poor sleep on daily functioning. In total, 12 participants completed device prototype testing, engaging with the prototype 94% of the assigned times (twice daily for 14 days; meeting predetermined feasibility cutoff of engagement ?70% of assigned times) and rating the prototype with an overall mean score of 5.43 on the Satisfaction subscale of the Usability, Satisfaction, and Ease of Use scale (range 4.42-7; exceeding the predetermined cutoff score for acceptability of 5.0). All participants completing the study reported they would be interested in using the prototype again and would recommend it to someone else with insomnia. Conclusions: YACS were highly engaged with our voice-activated virtual assistant?delivered CBT-I prototype and found it acceptable to use. Following final device development, future studies should evaluate the efficacy of this intervention among YACS. Trial Registration: ClinicalTrials.gov NCT05875129; https://clinicaltrials.gov/study/NCT05875129 UR - https://formative.jmir.org/2025/1/e64869 UR - http://dx.doi.org/10.2196/64869 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/64869 ER - TY - JOUR AU - Grutman, J. Aurora AU - Perelmuter, Sara AU - Perez, Abigail AU - Meurer, Janine AU - Contractor, Monica AU - Mathews, Eva AU - Shearer, Katie AU - Burnett, A. Lindsey AU - Uloko, Maria PY - 2025/3/6 TI - Understanding Patient Experiences of Vulvodynia Through Reddit: Qualitative Analysis JO - JMIR Infodemiology SP - e63072 VL - 5 KW - sexual health KW - health literacy KW - vulvodynia KW - vestibulodynia KW - pelvic pain KW - Reddit N2 - Background: Vulvodynia is a chronic vulvar pain condition affecting up to 25% of the US population. However, diagnosis and effective treatment remain elusive. Many individuals with vulvodynia face stigma and medical uncertainty, leading them to seek information and web-based support. Reddit is a popular social media platform where patients share health concerns and experiences. The anonymity and accessibility of this platform make it a valuable source of real-world patient perspectives that are often overlooked in clinical settings. Objective: This study evaluated Reddit content related to vulvodynia to explore how individuals with vulvodynia describe their symptoms, treatments, and personal experiences. Methods: The subreddits ?r/vulvodynia? and ?r/vestibulodynia? were selected for analysis in May 2023. Threads were sorted from the most popular to least popular, with ?popularity? measured by upvotes. Opening threads from the top 70 posts in each subreddit were extracted and analyzed using inductive qualitative analysis to identify themes and sentiment analysis to evaluate attitudes. Results: In May 2023, the ?r/vulvodynia? and ?r/vestibulodynia? subreddits had a total of 7930 members (7245 and 685 members, respectively). Out of 140 analyzed threads, 77 (55%) contained negative attitudes. A total of 50 (35.7%) threads were seeking information or advice and 90 (64.3%) included some form of peer support. Inductive thematic analysis identified 6 core themes: symptoms (n=86, 61.4%), treatments (n=83, 59.3%), sexuality (n=47, 33.6%), erasure or disbelief (n=38, 27.1%), representation or media (n=17, 12.1%), and humor (n=15, 10.7%). Threads that discussed treatments (48/83, 57.8%), sexual experiences (25/47, 53.2%), and representation (14/17, 82.4%) had the highest proportions of positive attitudes, while threads that touched on erasure (21/38, 55.3%), symptoms (51/86, 59.3%), and humor (12/15, 80%), had the highest proportion of negative attitudes. A multivariable logistic regression of valence on the themes revealed that posts referring to treatments (odds ratio 12.5, 95% CI 3.7-42.2; P<.001) or representation (odds ratio 21.2, 95% CI 4.2-106.0; P<.001) were associated with significantly increased odds of positive valence. Furthermore, it was noted that 3 of the 5 most frequently discussed treatments aligned with clinical guidelines from the American College of Obstetricians and Gynecologists, American Urological Association, and International Society for the Study of Vulvovaginal Disease. Despite this alignment, threads frequently mentioned alternative remedies and frustration with medical professionals related to diagnostic delays and perceived lack of understanding. Conclusions: This is the first study of Reddit discussions about vulvodynia. Findings suggest a gap between patient experiences and provider understanding, underscoring the need for improved patient education and greater clinician awareness of psychosocial factors in vulvodynia care. While limited by its sample size and lack of demographic data, this study highlights how web-based communities can help identify ways health care providers can better meet patient needs and how patients mutually support each other. UR - https://infodemiology.jmir.org/2025/1/e63072 UR - http://dx.doi.org/10.2196/63072 ID - info:doi/10.2196/63072 ER - TY - JOUR AU - Haughey, Marketa AU - Neyens, M. David AU - Hopkins, S. Casey AU - Gonzaga, Christofer AU - Harman, Melinda PY - 2025/3/6 TI - Identifying Strategies for Home Management of Ostomy Care: Content Analysis of YouTube JO - JMIR Hum Factors SP - e66634 VL - 12 KW - medical device usability KW - digital health KW - online support groups KW - living with chronic medical conditions KW - ostomy self-care KW - YouTube KW - patient education KW - user needs assessment KW - users experience KW - social media KW - ostomates KW - colostomy KW - ileostomy KW - usability KW - usefulness KW - utility KW - wearable device KW - medical device KW - support group KW - socials KW - social network KW - ostomy KW - digital KW - digital technology KW - digital intervention N2 - Background: The social media platform YouTube is a recognized educational resource for health information, but few studies have explored its value for conveying the lived experience of individuals managing chronic health conditions and end users? interactions with medical device technology. Our study explores self-care strategies and end user needs of people living with a stoma because patient education and engagement in ostomy self-care are essential for avoiding ostomy-related complications. Ostomy surgery creates a stoma (an opening) in the abdomen to alter the route of excreta from digestive and urinary organs into a detachable external pouching system. After hospital discharge, people who have undergone ostomies perform critical self-care tasks including frequent ostomy appliance changes and stomal and peristomal skin maintenance. Objective: The purpose of this study was to systematically assess YouTube videos narrated by people who have undergone ostomies about their ostomy self-care in home (nonhospital) settings with a focus on identifying end user needs and different strategies used by people who have undergone ostomies during critical self-care tasks. Methods: Using predefined search terms and clear inclusion and exclusion criteria, we identified YouTube videos depicting narrators who have undergone ostomies and their ostomy self-care in home settings. Using a consensus coding approach among 3 independent reviewers, all videos were analyzed to collect metadata, data of narrators who have undergone ostomies, and specific content data. Results: There were 65 user-generated YouTube videos that met the inclusion and exclusion criteria. These videos were posted by 28 unique content creators representing a broad range of ages who used a variety of supplies. The common challenges discussed were peristomal skin complications, inadequate appliance adhesion and subsequent leakage, and supplies-related challenges. Narrators who have undergone ostomies discussed various expert tricks and tips to successfully combat these challenges. Conclusions: This study used a novel approach to gain insights about end user interactions with medical devices while performing ostomy self-care, which are difficult to gain using traditional behavioral techniques. The analysis revealed that people who have undergone ostomies are willing to share their personal experience with ostomy self-care on the web and that these videos are viewed by the public. User-generated videos demonstrated a variety of supplies used, end user needs, and different strategies for performing ostomy self-care. Future research should examine how these findings connect to YouTube ostomy self-care content generated by health care professionals and organizations and to guidelines for ostomy self-care. UR - https://humanfactors.jmir.org/2025/1/e66634 UR - http://dx.doi.org/10.2196/66634 UR - http://www.ncbi.nlm.nih.gov/pubmed/40053741 ID - info:doi/10.2196/66634 ER - TY - JOUR AU - Nesbitt, Brittany AU - Virgadamo, Danielle AU - Aguirre, Carlos AU - DeCamp, Matthew AU - Dredze, Mark AU - Harrigian, Keith AU - Lhaksampa, Tenzin AU - Meuchel, M. Jennifer AU - Meyer, M. Aja AU - Walker, Alex AU - Zirikly, Ayah AU - Chisolm, S. Margaret AU - Zandi, P. Peter AU - Miller, Leslie PY - 2025/3/5 TI - Testing a Dashboard Intervention for Tracking Digital Social Media Activity in Clinical Care of Individuals With Mood and Anxiety Disorders: Protocol and Design Considerations for a Pragmatic Randomized Trial JO - JMIR Res Protoc SP - e63279 VL - 14 KW - digital mental health KW - mental health KW - dashboards KW - psychiatry KW - measurement-based care KW - electronic communication KW - social media KW - depression KW - anxiety KW - personal health information N2 - Background: Mood and anxiety disorders are prevalent mental health diagnoses. Numerous studies have shown that measurement-based care, which is used to monitor patient symptoms, functioning, and treatment progress and help guide clinical decisions and collaboration on treatment goals, can improve outcomes in patients with these disorders. Including digital information regarding patients? electronic communications and social media activity is an innovative approach to augmenting measurement-based care. Recent data indicate interest and willingness from both mental health clinicians and patients to share this type of digital information in treatment sessions. However, the clinical benefit of systematically doing this has been minimally evaluated. Objective: This study aims to develop an electronic dashboard for tracking patients? digital social activity and a protocol for a pragmatic randomized trial to test the feasibility and efficacy of using the dashboard in real-world clinical care of patients with depression or anxiety disorders. Methods: We developed a personalized electronic dashboard that tracks patients? electronic communications and social media activity, visualizes data on these interactions through key graphics and figures, and provides a tool that can be readily integrated into routine clinical care for use by clinicians and patients during treatment sessions. We then designed a randomized trial to evaluate the feasibility and effectiveness of using the electronic dashboard in real-world care compared to treatment as usual. The trial included patients aged ?12 years with a mood or anxiety disorder who were receiving treatment in outpatient psychiatry clinics in the Johns Hopkins Health System and the Kennedy Krieger Institute. The primary outcome includes changes in patient-rated depression symptoms. Secondary outcomes include changes in patient-rated anxiety symptoms and overall functioning. Exploratory analyses examine the impact of the intervention on measures of therapeutic alliance and the detection of clinically actionable targets. Results: We successfully developed an electronic dashboard for tracking patients? electronic communications and social media activity, and we implemented a protocol for evaluating the feasibility and efficacy of using the dashboard in routine care for mood or anxiety disorders. The protocol was approved by the Johns Hopkins University School of Medicine Institutional Review Board. In this study, we report the technological, ethical, and pragmatic considerations in developing the dashboard and testing it in a real-world setting. Conclusions: The integration of an electronic dashboard to monitor digital social activity in mental health care treatment is novel. This study examines the feasibility and effectiveness of the dashboard and the challenges in implementing this protocol. The lessons learned from developing and implementing the study will inform ongoing discussions about the value of gathering collateral information on patients? digital social activity and how to do so in a way that is acceptable and clinically effective. Trial Registration: ClinicalTrials.gov NCT03925038; https://clinicaltrials.gov/study/NCT03925038 International Registered Report Identifier (IRRID): DERR1-10.2196/63279 UR - https://www.researchprotocols.org/2025/1/e63279 UR - http://dx.doi.org/10.2196/63279 UR - http://www.ncbi.nlm.nih.gov/pubmed/40053788 ID - info:doi/10.2196/63279 ER - TY - JOUR AU - Wellman, L. Mariah AU - Owens, M. Camilla AU - Holton, E. Avery AU - Kaphingst, A. Kimberly PY - 2025/3/3 TI - Examining BRCA Previvors? Social Media Content Creation as a Form of Self and Community Care: Qualitative Interview Study JO - J Med Internet Res SP - e67794 VL - 27 KW - BRCA KW - breast cancer KW - genetic testing KW - social media KW - breast cancer gene KW - content creation KW - self care KW - community care KW - qualitative interview KW - qualitative KW - interview KW - previvors KW - cancer previvors KW - genetic mutations KW - online KW - content KW - interviews KW - thematic analysis N2 - Background: Genetic testing has become a common way of identifying a woman?s risk of developing hereditary breast and ovarian cancer; however, not all medical providers have the necessary information to support patients interested in genetic testing, nor do they always have the proper information for patients once they have been diagnosed. Therefore, many ?previvors??the name given to those who have tested positive for the BRCA genetic mutation?have taken to social media to inform others about the importance of genetic testing and explain to them how to understand their test results. Historically, those desiring to speak about their medical issues online have sought out structured support groups or chat rooms; however, many previvors today are instead posting on their own personal social media accounts and creating more niche communities. Objective: This study aimed to examine why BRCA previvors are sharing content on their personal social media accounts and how posting online in this way serves a purpose for their larger community. Methods: A total of 16 semistructured interviews were conducted with individuals who posted about their experience being diagnosed with the BRCA genetic mutation and their subsequent treatment on their personal social media accounts, specifically for followers interested in their medical journey. The interviews were recorded, transcribed, and coded by an experienced qualitative researcher and a graduate student using inductive techniques, and a reflexive thematic analysis was applied to the transcripts. Results: The results suggest BRCA previvors want to control the narrative around their personalized medical experiences rather than participating in existing groups or chat rooms. Controlling their own story, rather than adding to existing narratives, gives previvors a sense of control. It also allows them to set boundaries around the types of experiences they have online when sharing their medical journey. Finally, previvors said they feel they are serving the larger BRCA community by each sharing their individual journeys, to hopefully avoid stereotyping and homogenizing the experience of patients with BRCA genetic mutations. Conclusions: Research with the objective of understanding the experiences of BRCA previvors should include exploring how and why they talk about their journeys, especially due to the lack of knowledge BRCA previvors say many of their medical providers have. We suggest further research should examine how other patients with the BRCA genetic mutation, especially racial and ethnic minority patients, are navigating their own content creation, especially considering content moderation policies that social media platforms are continuing to implement that directly impact users? ability to share about their medical experiences. UR - https://www.jmir.org/2025/1/e67794 UR - http://dx.doi.org/10.2196/67794 UR - http://www.ncbi.nlm.nih.gov/pubmed/40053732 ID - info:doi/10.2196/67794 ER - TY - JOUR AU - Huang, Mengxia Nova AU - Wong, Ze Liang AU - Ho, S. Shirley AU - Timothy, Bryan PY - 2025/2/28 TI - Understanding Challenges and Emotions of Informal Caregivers of General Older Adults and People With Alzheimer Disease and Related Dementia: Comparative Study JO - J Med Internet Res SP - e54847 VL - 27 KW - informal caregivers KW - older adults KW - Alzheimer disease and related dementia KW - online support communities KW - Reddit N2 - Background: Faced with multiple challenges, informal caregivers often turn to online support communities for information and support. While scholarly attention has focused on experiences expressed by informal caregivers in these communities, how caregivers? challenges and emotional expressions vary across different health contexts remains understudied. Objective: We aimed to examine and compare the challenges discussed by informal caregivers of general older adults and those of patients with Alzheimer disease and related dementia, as well as their emotional expressions, on Reddit. In addition, we examined how informal caregivers expressed their emotions in response to various challenges. Methods: We collected posts from 6 subreddits, including 3 subreddits on caregiving for older adults and 3 on caregiving for patients with Alzheimer disease and related dementia. Using topic modeling, we identified topics discussed by caregivers in the collected posts. We further used deep reading to contextualize these topics and understand the challenges behind them, conducted sentiment analysis to investigate their emotional expressions, and used Spearman rank-order correlation to examine the relationship between the obtained topics and emotions. Results: In total, 3028 posts were retrieved, including 1552 from older adult?related subreddits and 1476 from Alzheimer disease?related subreddits; 18 key topics were identified, with the most frequent topics being expressing feelings (2178/3028, 71.93%) and seeking advice and support (1982/3028, 65.46%). Other topics covered various challenges in caregiving, such as duration of medical care (1954/3028, 64.53%), sleep and incontinence (1536/3028, 50.73%), financial issues (1348/3028, 44.52%), and nursing home (1221/3028, 40.32%). There was a positive, negligible correlation between expressing feelings and seeking advice and support (?=0.09, P<.001). Other topics also showed positive, negligible or weak correlations with these 2 topics but in distinct patterns. Posts from older adult?related subreddits were more focused on practical caregiving issues and seeking advice and support, whereas posts from Alzheimer disease?related subreddits emphasized health- and medical-related topics and expressing feelings. Caregivers in both contexts predominantly expressed negative emotions (older adults: 1263/1552, 81.38%; Alzheimer disease: 1247/1476, 84.49%), with caregivers in Alzheimer disease?related subreddits exhibiting slightly greater fear and sadness (P<.001). Specific challenges were significantly correlated with negative emotions: duration of medicalcare was positively, weakly correlated with anger (?=0.25, P<.001), fear (?=0.25, P<.001), and sadness (?=0.22, P<.001). Medical appointments were positively, negligibly correlated with anger (?=0.10, P<.001), fear (?=0.09, P<.001), and sadness (?=0.06, P<.001). Sleep and incontinence (?=0.14, P<.001) and finances (?=0.24, P<.001) were positively, weakly correlated with anger. Conclusions: By identifying the challenges and feelings expressed by caregivers for general older adults and caregivers for patients with Alzheimer disease and related dementia, our findings could inform health practitioners and policy makers in developing more targeted support interventions for informal caregivers in different contexts. UR - https://www.jmir.org/2025/1/e54847 UR - http://dx.doi.org/10.2196/54847 UR - http://www.ncbi.nlm.nih.gov/pubmed/40053723 ID - info:doi/10.2196/54847 ER - TY - JOUR AU - Ryu, Hyeyoung AU - Pratt, Wanda PY - 2025/2/26 TI - Women?s Educating and Coping Strategies for Cultivating Supportive Web-Based Spaces for Discussing Sexual and Reproductive Health: Co-Design Study JO - J Med Internet Res SP - e62716 VL - 27 KW - sexual and reproductive health KW - women?s health KW - stigma KW - microaggression KW - coping KW - counternarrative KW - social media KW - web-based communities KW - support KW - co-design N2 - Background: Stigma surrounding women?s sexual and reproductive health (SRH) often prevents them from seeking essential care. In South Korea, unmarried women face strong cultural taboos, increasing their risk for conditions such as pelvic inflammatory disease, infertility, and cervical cancer. While many unmarried women turn to web-based communities for support, these spaces frequently expose them to microaggressions, further discouraging their access to health care and worsening their health risks. Objective: We aimed to encourage a safe space for seeking support on the culturally taboo topic of SRH by counteracting and reducing web-based microaggressions. We sought to make these last-resort safe spaces supportive by reducing and preventing microaggressions, fostering coping strategies, and educating rather than solely punishing perpetrators. Methods: We conducted co-design sessions with 14 unmarried Korean women. In the first co-design session, we introduced the term microaggression and collaborated with participants to create base design components aimed at countering and preventing microaggressions. In the second co-design session, participants initially viewed examples of microaggression comments, then designed using the provided base design templates inspired by their suggestions from the first session and finally designed for a scenario where they would be seeking support. We analyzed co-design session transcripts using inductive and deductive methods. Results: Our analysis revealed 6 goals addressing coping strategies, educational approaches, and cultural characteristics shaping participants? designs. Reflective coping strategies were supported through designs that numerically indicate positive support and provide holistic views of diverse perspectives, helping participants reassess provocative situations with cognitive clarity. Suppressive coping strategies were fostered by encouraging less-emotional responses, empowering participants to address microaggressions logically without self-blame. Educational approaches emphasized fostering shared awareness of microaggressions and providing respectful education for perpetrators about the harm their words can cause. Participants suggested counterspeech mechanisms, including rephrasing suggestions and public educational resources, to balance education with freedom of expression. They also proposed that forum-approved experts guide discussions to ensure accurate, empathetic responses and support users in addressing nuanced situations effectively. Cultural characteristics heavily influenced these goals. Participants noted the nebulous nature of microaggressions, their reluctance to burden their social support network, and societal perceptions of women as overly emotional?all of which shaped their desire for designs that enhance logical justification. For example, participants preferred tools such as expert-led discussions and comprehensive perspectives to rationalize their experiences while reducing stigma. Conclusions: Our work advocates for prioritizing educational and explanatory approaches over punitive detection and deletion measures to create supportive web-based spaces for individuals discussing stigmatized SRH. By integrating culturally informed coping strategies, counter speech mechanisms, and educational designs, these tools empower microaggression targets and allies while fostering reflection and behavior change among perpetrators. Our work provides a first step toward counteracting microaggressions and ultimately encouraging women to seek the needed SRH care. UR - https://www.jmir.org/2025/1/e62716 UR - http://dx.doi.org/10.2196/62716 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/62716 ER - TY - JOUR AU - Hwang, Jeong Hee AU - Kim, Nara AU - You, Yun Jeong AU - Ryu, Ri Hye AU - Kim, Seo-Young AU - Yoon Park, Han Jung AU - Lee, Won Ki PY - 2025/2/25 TI - Harnessing Social Media Data to Understand Information Needs About Kidney Diseases and Emotional Experiences With Disease Management: Topic and Sentiment Analysis JO - J Med Internet Res SP - e64838 VL - 27 KW - kidney diseases KW - online health communities KW - topic modeling KW - sentiment analysis KW - disease management KW - patient support N2 - Background: Kidney diseases encompass a variety of conditions, including chronic kidney disease, acute kidney injury, glomerulonephritis, and polycystic kidney disease. These diseases significantly impact patients? quality of life and health care costs, often necessitating substantial lifestyle changes, especially regarding dietary management. However, patients frequently receive ambiguous or conflicting dietary advice from health care providers, leading them to seek information and support from online health communities. Objective: This study aimed to analyze social media data to better understand the experiences, challenges, and concerns of patients with kidney disease and their caregivers in South Korea. Specifically, it explored how online communities assist in disease management and examined the sentiment surrounding dietary management. Methods: Data were collected from KidneyCafe, a prominent South Korean online community for patients with kidney disease hosted on the Naver platform. A total of 124,211 posts from 10 disease-specific boards were analyzed using latent Dirichlet allocation for topic modeling and Bidirectional Encoder Representations From Transformers?based sentiment analysis. In addition, Efficiently Learning an Encoder That Classifies Token Replacements Accurately?based classification was used to further analyze posts related to disease management. Results: The analysis identified 6 main topics within the community: family health and support, medication and side effects, examination and diagnosis, disease management, surgery for dialysis, and costs and insurance. Sentiment analysis revealed that posts related to the medication and side effects and surgery for dialysis topics predominantly expressed negative sentiments. Both significant negative sentiments concerning worries about kidney transplantation among family members and positive sentiments regarding physical improvements after transplantation were expressed in posts about family health and support. For disease management, 7 key subtopics were identified, with inquiries about dietary management being the leading subtopic. Conclusions: The findings highlight the critical role of online communities in providing support and information for patients with kidney disease and their caregivers. The insights gained from this study can inform health care providers, policy makers, and support organizations to better address the needs of patients with kidney disease, particularly in areas related to dietary management and emotional support. UR - https://www.jmir.org/2025/1/e64838 UR - http://dx.doi.org/10.2196/64838 UR - http://www.ncbi.nlm.nih.gov/pubmed/39998877 ID - info:doi/10.2196/64838 ER - TY - JOUR AU - Nagra, Harpreet AU - Mines, A. Robert AU - Dana, Zara PY - 2025/2/25 TI - Exploring the Impact of Digital Peer Support Services on Meeting Unmet Needs Within an Employee Assistance Program: Retrospective Cohort Study JO - JMIR Hum Factors SP - e68221 VL - 12 KW - digital peer support KW - peer support KW - EAPs KW - cost-effectiveness KW - SROI N2 - Background: The World Health Organization estimates that 1 in 4 people worldwide will experience a mental disorder in their lifetime, highlighting the need for accessible support. Objective: This study evaluates the integration of digital peer support (DPS) into an employee assistance program (EAP), testing 3 hypotheses: (1) DPS may be associated with changes in EAP counseling utilization within a 5-session model; (2) DPS users experience reduced sadness, loneliness, and stress; and (3) DPS integration generates a positive social return on investment (SROI). Methods: The study analyzed EAP utilization within a 5-session model using pre-post analysis, sentiment changes during DPS chats via natural language processing models, and SROI outcomes. Results: Among 587 DPS chats, 432 (73.6%) occurred after business hours, emphasizing the importance of 24/7 availability. A matched cohort analysis (n=72) showed that DPS reduced therapy sessions by 2.07 per participant (P<.001; Cohen d=1.77). Users? messages were evaluated for sentiments of sadness, loneliness, and stress on a 1-10 scale. Significant reductions were observed: loneliness decreased by 55.04% (6.91 to 3.11), sadness by 57.5% (6.84 to 2.91), and stress by 56.57% (6.78 to 2.95). SROI analysis demonstrated value-to-investment ratios of US $1.66 (loneliness), US $2.50 (stress), and US $2.58 (sadness) per dollar invested. Conclusions: Integrating DPS into EAPs provides significant benefits, including increased access, improved emotional outcomes, and a high SROI, reinforcing its value within emotional health support ecosystems. UR - https://humanfactors.jmir.org/2025/1/e68221 UR - http://dx.doi.org/10.2196/68221 UR - http://www.ncbi.nlm.nih.gov/pubmed/39998863 ID - info:doi/10.2196/68221 ER - TY - JOUR AU - Nagpal, Meghan AU - Jalali, Niloofar AU - Sherifali, Diana AU - Morita, Plinio AU - Cafazzo, A. Joseph PY - 2025/2/21 TI - Investigating Reddit Data on Type 2 Diabetes Management During the COVID-19 Pandemic Using Latent Dirichlet Allocation Topic Modeling and Valence Aware Dictionary for Sentiment Reasoning Analysis: Content Analysis JO - JMIR Form Res SP - e51154 VL - 9 KW - diabetes KW - diabetes mellitus KW - DM KW - COVID-19 KW - pandemics KW - social media KW - health behavior KW - health knowledge KW - attitudes KW - practice KW - self-management KW - patient-generated health data KW - perspective KW - T2DM N2 - Background: Type 2 diabetes (T2D) is a chronic disease that can be partially managed through healthy behaviors. However, the COVID-19 pandemic impacted how people managed T2D due to work and school closures and social isolation. Moreover, individuals with T2D were at increased risk of complications from COVID-19 and experienced worsened mental health due to stress and anxiety. Objective: This study aims to synthesize emerging themes related to the health behaviors of people living with T2D, and how they were affected during the early stages of the COVID-19 pandemic by examining Reddit forums dedicated to people living with T2D. Methods: Data from Reddit forums related to T2D, from January 2018 to early March 2021, were downloaded using the Pushshift API; support vector machines were used to classify whether a post was made in the context of the pandemic. Latent Dirichlet allocation topic modelling was performed to identify topics of discussion across the entire dataset and a subsequent iteration was performed to identify topics specific to the COVID-19 pandemic. Sentiment analysis using the VADER (Valence Aware Dictionary for Sentiment Reasoning) algorithm was performed to assess attitudes towards the pandemic. Results: From all posts, the identified topics of discussion were classified into the following themes: managing lifestyle (sentiment score 0.25, 95% CI 0.25-0.26), managing blood glucose (sentiment score 0.19, 95% CI 0.18-0.19), obtaining diabetes care (sentiment score 0.19, 95% CI 0.18-0.20), and coping and receiving support (sentiment score 0.34, 95% CI 0.33-0.35). Among the COVID-19?specific posts, the topics of discussion were coping with poor mental health (sentiment score 0.04, 95% CI ?0.01 to0.11), accessing doctor and medications and controlling blood glucose (sentiment score 0.14, 95% CI 0.09-0.20), changing food habits during the pandemic (sentiment score 0.25, 95% CI 0.20-0.31), impact of stress on blood glucose levels (sentiment score 0.03, 95% CI ?0.03 to 0.08), changing status of employment and insurance (sentiment score 0.17, 95% CI 0.13-0.22), and risk of COVID-19 complications (sentiment score 0.09, 95% CI 0.03-0.14). Overall, posts classified as COVID-19?related (0.12, 95% CI 0.01-0.15) were associated with a lower sentiment score than those classified as nonCOVID (0.25, 95% CI 0.24-0.25). This study was limited due to the lack of a method for assessing the demographics of users and verifying whether users had T2D. Conclusions: Themes identified from Reddit data suggested that the COVID-19 pandemic significantly influenced how people with T2D managed their disease, particularly in terms of accessing care and dealing with the complications of the virus. Overall, the early stages of the pandemic negatively impacted the attitudes of people living with T2D. This study demonstrates that social media data can be a qualitative data source for understanding patient perspectives. UR - https://formative.jmir.org/2025/1/e51154 UR - http://dx.doi.org/10.2196/51154 ID - info:doi/10.2196/51154 ER - TY - JOUR AU - Jandu, Simi AU - Carey, L. Jennifer PY - 2025/2/21 TI - Exploring Social Media Use Among Medical Students Applying for Residency Training: Cross-Sectional Survey Study JO - JMIR Med Educ SP - e59417 VL - 11 KW - social media KW - residency recruitment KW - Instagram KW - Reddit KW - medical students KW - student KW - residency KW - residency training KW - social media engagement KW - training programs KW - social media usage KW - cross-sectional survey KW - survey KW - residency training program KW - thematic analysis N2 - Background: Since the COVID-19 pandemic, residency candidates have moved from attending traditional in-person interviews to virtual interviews with residency training programs. This transition spurred increased social media engagement by residency candidates, in an effort to learn about prospective programs, and by residency programs, to improve recruitment efforts. There is a paucity of literature on the effectiveness of social media outreach and its impact on candidates? perceptions of residency programs. Objective: We aimed to determine patterns of social media platform usage among prospective residency candidates and social media?s influence on students? perceptions of residency programs. Methods: A cross-sectional survey was administered anonymously to fourth-year medical students who successfully matched to a residency training program at a single institution in 2023. These data were analyzed using descriptive statistics, as well as thematic analysis for open-ended questions. Results: Of the 148 eligible participants, 69 (46.6%) responded to the survey, of whom 45 (65.2%) used social media. Widely used social media platforms were Instagram (19/40, 47.5%) and Reddit (18/40, 45%). Social media influenced 47.6% (20/42) of respondents? opinions of programs and had a moderate or major effect on 26.2% (11/42) of respondents? decisions on program ranking. Resident-faculty relations and social events showcasing camaraderie and wellness were the most desired content. Conclusions: Social media is used by the majority of residency candidates during the residency application process and influences residency program ranking. This highlights the importance of residency programs in leveraging social media usage to recruit applicants and provide information that allows the candidate to better understand the program. UR - https://mededu.jmir.org/2025/1/e59417 UR - http://dx.doi.org/10.2196/59417 ID - info:doi/10.2196/59417 ER - TY - JOUR AU - Yang, Hongwu AU - Zhu, Chuangying AU - Zhou, Chunyan AU - Huang, Ruibin AU - Huang, Lipeng AU - Chen, Peifen AU - Zhu, Shanshan AU - Wang, Huanpeng AU - Zhu, Chunmin PY - 2025/2/19 TI - Evaluation of Douyin Short Videos on Mammography in China: Quality and Reliability Analysis JO - JMIR Cancer SP - e59483 VL - 11 KW - breast cancer KW - mammography KW - Douyin KW - information quality KW - social media KW - video KW - DISCERN KW - Global Quality Score KW - web-based education KW - cancer screening KW - health information KW - medical content N2 - Background: Breast cancer is the most common malignant tumor and the fifth leading cause of cancer death worldwide, imposing a significant disease burden in China. Mammography is a key method for breast cancer screening, particularly for early diagnosis. Douyin, a popular social media platform, is increasingly used for sharing health information, but the quality and reliability of mammography-related videos remain unexamined. Objective: This study aimed to evaluate the information quality and reliability of mammography videos on Douyin. Methods: In October 2023, a search using the Chinese keywords for ?mammography? and ?mammography screening? was conducted on Douyin. From 200 retrieved videos, 136 mammography-related videos were selected for analysis. Basic video information, content, and sources were extracted. Video content was assessed for comprehensiveness across 7 categories: conception, examination process, applicable objects, precautions, combined examinations, advantages, and report. Completeness was evaluated using a researcher-developed checklist, while reliability and quality were measured using 2 modified DISCERN (mDISCERN) tool and the Global Quality Score (GQS). Correlations between video quality and characteristics were also examined. Results: Among the video sources, 82.4% (112/136) were attributed to health professionals, and 17.6% (24/136) were attributed to nonprofessionals. Among health professionals, only 1 was a radiologist. Overall, 77.2% (105/136) of the videos had useful information about mammography. Among the useful videos, the advantages of mammography were the most frequently covered topic (53/105, 50.5%). Median values for the mDISCERN and GQS evaluations across all videos stood at 2.5 (IQR 1.63?3) and 2 (IQR 1?2), respectively. Within the subgroup assessment, the median mDISCERN score among the useful and professional groups stood at 2 (IQR 2?3) and 3 (IQR 2?3), respectively, surpassing the corresponding score for the unhelpful and nonprofessional groups at 0 (IQR 0?0) and 0 (IQR 0?0.75; P<.001). Likewise, the median GQS among the useful and professional groups was evaluated at 2 (IQR 1.5?2) and 2 (IQR 1?2), respectively, eclipsing that of the unhelpful and nonprofessional groups at 1 (IQR 1?1) and 1 (IQR 1?1.37; P<.001). The GQS was weak and negatively correlated with the number of likes (r=?0.24; P=.004), comments (r=?0.29; P<.001), and saves (r=?0.20; P=.02). The mDISCERN score was weak and negatively correlated with the number of likes (r=?0.26; P=.002), comments (r=?0.36; P<.001), saves (r=?0.22; P=.009), and shares (r=?0.18; P=.03). Conclusions: The overall quality of mammography videos on Douyin is suboptimal, with most content uploaded by clinicians rather than radiologists. Radiologists should be encouraged to create accurate and informative videos to better educate patients. As Douyin grows as a health information platform, stricter publishing standards are needed to enhance the quality of medical content. UR - https://cancer.jmir.org/2025/1/e59483 UR - http://dx.doi.org/10.2196/59483 ID - info:doi/10.2196/59483 ER - TY - JOUR AU - Zhang, Xinyu AU - Zhu, Jianfeng AU - Kenne, R. Deric AU - Jin, Ruoming PY - 2025/2/19 TI - Teenager Substance Use on Reddit: Mixed Methods Computational Analysis of Frames and Emotions JO - J Med Internet Res SP - e59338 VL - 27 KW - teenager KW - substance use KW - Reddit KW - emotional analysis KW - bidirectional encoder representations from transformers KW - BERT KW - frame approach N2 - Background: Adolescent substance use disorder is a pressing public health issue, with increasing prevalence as individuals age. Social media platforms like Reddit (Reddit Inc) serve as significant venues for teenagers to discuss and navigate substance use. Social media platforms, such as Reddit, serve as increasingly important spaces where teenagers discuss, share, and navigate their experiences with substance use, presenting unique opportunities and challenges for understanding and addressing this issue. Objective: This study aims to explore how teenagers frame substance-use discussions on the r/teenagers subreddit, focusing on their personal interpretations, causal attributions, and the social and psychological contexts that shape these online support groups. By identifying these interpretive frames, we aimed to better understand the complex drivers of adolescent substance use behavior and their potential interventions. Methods: Using natural language processing techniques, we analyzed 32,674 substance use?related posts from 2018 to 2022. A framing approach was used to identify and categorize prevalent themes, supplemented by emotional profiling using the EmoLLaMA-chat-13B model developed by Liu and colleagues. Results: In total, 7 primary frames emerged: normalization, risk awareness, social integration, autonomy and rebellion, coping mechanisms, media influence, and stigmatization. These frames varied in prevalence and were associated with distinct emotional profiles, highlighting the complex interplay between substance use and adolescent experiences. We observed that, for example, the normalization frame was often associated with a mix of sadness and anxiety, while the coping frame exhibited elevated levels of anger, sadness, and anxiety. These distinctive emotional landscapes associated with each frame reveal unique insights into the mental state of adolescents navigating substance use. Conclusions: The findings underscore the multifaceted nature of adolescent substance-use discussions on social media. Interventions must address underlying emotional and social factors as well as identity to effectively mitigate substance use disorder among adolescents. By understanding the frames teenagers use to interpret substance use, we can pave the way for more effective and personalized public health campaigns, and support services designed to resonate with adolescents? unique lived experiences. UR - https://www.jmir.org/2025/1/e59338 UR - http://dx.doi.org/10.2196/59338 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59338 ER - TY - JOUR AU - Li, Xiancheng AU - Vaghi, Emanuela AU - Pasi, Gabriella AU - Coulson, S. Neil AU - De Simoni, Anna AU - Viviani, Marco AU - PY - 2025/2/13 TI - Understanding the Engagement and Interaction of Superusers and Regular Users in UK Respiratory Online Health Communities: Deep Learning?Based Sentiment Analysis JO - J Med Internet Res SP - e56038 VL - 27 KW - social media KW - online health communities KW - social network analysis KW - sentiment analysis KW - bio-bidirectional encoder representations from transformers KW - asthma KW - chronic obstructive pulmonary disease N2 - Background: Online health communities (OHCs) enable people with long-term conditions (LTCs) to exchange peer self-management experiential information, advice, and support. Engagement of ?superusers,? that is, highly active users, plays a key role in holding together the community and ensuring an effective exchange of support and information. Further studies are needed to explore regular users? interactions with superusers, their sentiments during interactions, and their ultimate impact on the self-management of LTCs. Objective: This study aims to gain a better understanding of sentiment distribution and the dynamic of sentiment of posts from 2 respiratory OHCs, focusing on regular users? interaction with superusers. Methods: We conducted sentiment analysis on anonymized data from 2 UK respiratory OHCs hosted by Asthma UK (AUK), and the British Lung Foundation (BLF) charities between 2006-2016 and 2012-2016, respectively, using the Bio-Bidirectional Encoder Representation from Transformers (BioBERT), a pretrained language representation model. Given the scarcity of health-related labeled datasets, BioBERT was fine-tuned on the COVID-19 Twitter Dataset. Positive, neutral, and negative sentiments were categorized as 1, 0, and ?1, respectively. The average sentiment of aggregated posts by regular users and superusers was then calculated. Superusers were identified based on a definition already used in our previous work (ie, ?the 1% users with the largest number of posts over the observation period?) and VoteRank, (ie, users with the best spreading ability). Sentiment analyses of posts by superusers defined with both approaches were conducted for correlation. Results: The fine-tuned BioBERT model achieved an accuracy of 0.96. The sentiment of posts was predominantly positive (60% and 65% of overall posts in AUK and BLF, respectively), remaining stable over the years. Furthermore, there was a tendency for sentiment to become more positive over time. Overall, superusers tended to write shorter posts characterized by positive sentiment (63% and 67% of all posts in AUK and BLF, respectively). Superusers defined by posting activity or VoteRank largely overlapped (61% in AUK and 79% in BLF), showing that users who posted the most were also spreaders. Threads initiated by superusers typically encouraged regular users to reply with positive sentiments. Superusers tended to write positive replies in threads started by regular users whatever the type of sentiment of the starting post (ie, positive, neutral, or negative), compared to the replies by other regular users (62%, 51%, 61% versus 55%, 45%, 50% in AUK; 71%, 62%, 64% versus 65%, 56%, 57% in BLF, respectively; P<.001, except for neutral sentiment in AUK, where P=.36). Conclusions: Network and sentiment analyses provide insight into the key sustaining role of superusers in respiratory OHCs, showing they tend to write and trigger regular users? posts characterized by positive sentiment. UR - https://www.jmir.org/2025/1/e56038 UR - http://dx.doi.org/10.2196/56038 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/56038 ER - TY - JOUR AU - Wallraf, Simon AU - Köthemann, Sara AU - Wiesemann, Claudia AU - Wöhlke, Sabine AU - Dierks, Marie-Luise AU - Schmidt, Andrea Marion AU - van Gils-Schmidt, Jasper Henk AU - Lander, Jonas PY - 2025/2/13 TI - Digital Transformation in Patient Organizations: Interview and Focus Group Study JO - J Med Internet Res SP - e62750 VL - 27 KW - patient organization KW - patient support KW - digitalization KW - digital transformation KW - health research N2 - Background: Patient organizations (POs) are an integral part of the health care landscape, serving as advocates and support systems for patients and their families. As the digitalization of health care accelerates, POs are challenged to adapt their diverse roles to digital formats. However, the extent and form of POs? digital adaptation and the challenges POs encounter in their digital transformation remain unexplored. Objective: This study aims to investigate the digital transformation processes within POs. We examined the types of digital activities and processes implemented, people involved in respective tasks, challenges encountered, and attitudes toward the digitalization of POs. Methods: The study was carried out by the multicenter interdisciplinary research network Pandora. We adopted a qualitative exploratory approach by conducting 37 semistructured interviews and 2 focus groups with representatives and members of POs in Germany. Results were obtained using a deductive-inductive approach based on a qualitative content analysis. Methods and results were reported in accordance with the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist. Results: POs primarily apply basic digital tools to engage in communication, health education, and information dissemination. Some also develop specific mobile apps and collect health data through patient registries. Volunteers cover a considerable part of the workload. Sometimes, POs collaborate with external partners, such as health professionals or other nonprofit organizations. Furthermore, many (13/46, 28%) interviewees referred to the importance of involving members in digitalization efforts to better meet their needs. However, they described the actual practices used to involve members in, for example, developing digital services as limited, passive, or implicit. When evaluating digital transformation processes, representatives and members of POs expressed generally positive attitudes and acknowledged their potential to improve the accessibility of support services, management efficiency, and outreach. Still, resource constraints; the complexity of digital initiatives; and accessibility issues for certain demographic groups, especially older persons, were frequently mentioned as challenges. Several (15/46, 33%) interviewees highlighted POs? increasing responsibility to support their members? digital competencies and digital health literacy. Conclusions: POs are actively involved in the digital transformation of health services. To navigate challenges and further shape and sustain digital activities and processes, POs may benefit from governance frameworks, that is, a clear plan outlining with whom, how, and with what objectives digital projects are being realized. Support from public, scientific, and policy institutions to enhance the process through training, mentorship, and fostering collaborative networks seems warranted. UR - https://www.jmir.org/2025/1/e62750 UR - http://dx.doi.org/10.2196/62750 UR - http://www.ncbi.nlm.nih.gov/pubmed/39946181 ID - info:doi/10.2196/62750 ER - TY - JOUR AU - Wu, Xingyue AU - Lam, Sing Chun AU - Hui, Ho Ka AU - Loong, Ho-fung Herbert AU - Zhou, Rui Keary AU - Ngan, Chun-Kit AU - Cheung, Ting Yin PY - 2025/2/10 TI - Perceptions in 3.6 Million Web-Based Posts of Online Communities on the Use of Cancer Immunotherapy: Data Mining Using BERTopic JO - J Med Internet Res SP - e60948 VL - 27 KW - social media KW - cancer KW - immunotherapy KW - perceptions KW - data mining KW - oncology KW - web-based KW - lifestyle KW - therapeutic intervention KW - leukemia KW - lymphoma KW - survival KW - treatment KW - health information KW - decision-making KW - online community KW - machine learning N2 - Background: Immunotherapy has become a game changer in cancer treatment. The internet has been used by patients as a platform to share personal experiences and seek medical guidance. Despite the increased utilization of immunotherapy in clinical practice, few studies have investigated the perceptions about its use by analyzing social media data. Objective: This study aims to use BERTopic (a topic modeling technique that is an extension of the Bidirectional Encoder Representation from Transformers machine learning model) to explore the perceptions of online cancer communities regarding immunotherapy. Methods: A total of 4.9 million posts were extracted from Facebook, Twitter, Reddit, and 16 online cancer-related forums. The textual data were preprocessed by natural language processing. BERTopic modeling was performed to identify topics from the posts. The effectiveness of isolating topics from the posts was evaluated using 3 metrics: topic diversity, coherence, and quality. Sentiment analysis was performed to determine the polarity of each topic and categorize them as positive or negative. Based on the topics generated through topic modeling, thematic analysis was conducted to identify themes associated with immunotherapy. Results: After data cleaning, 3.6 million posts remained for modeling. The highest overall topic quality achieved by BERTopic was 70.47% (topic diversity: 87.86%; topic coherence: 80.21%). BERTopic generated 14 topics related to the perceptions of immunotherapy. The sentiment score of around 0.3 across the 14 topics suggested generally positive sentiments toward immunotherapy within the online communities. Six themes were identified, primarily covering (1) hopeful prospects offered by immunotherapy, (2) perceived effectiveness of immunotherapy, (3) complementary therapies or self-treatments, (4) financial and mental impact of undergoing immunotherapy, (5) impact on lifestyle and time schedules, and (6) side effects due to treatment. Conclusions: This study provides an overview of the multifaceted considerations essential for the application of immunotherapy as a therapeutic intervention. The topics and themes identified can serve as supporting information to facilitate physician-patient communication and the decision-making process. Furthermore, this study also demonstrates the effectiveness of BERTopic in analyzing large amounts of data to identify perceptions underlying social media and online communities. UR - https://www.jmir.org/2025/1/e60948 UR - http://dx.doi.org/10.2196/60948 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/60948 ER - TY - JOUR AU - Ang, Heng Beng AU - Gollapalli, Das Sujatha AU - Du, Mingzhe AU - Ng, See-Kiong PY - 2025/2/7 TI - Unraveling Online Mental Health Through the Lens of Early Maladaptive Schemas: AI-Enabled Content Analysis of Online Mental Health Communities JO - J Med Internet Res SP - e59524 VL - 27 KW - early maladaptive schemas KW - large language models KW - online mental health communities KW - case conceptualization KW - prompt engineering KW - artificial intelligence KW - AI N2 - Background: Early maladaptive schemas (EMSs) are pervasive, self-defeating patterns of thoughts and emotions underlying most mental health problems and are central in schema therapy. However, the characteristics of EMSs vary across demographics, and despite the growing use of online mental health communities (OMHCs), how EMSs manifest in these online support-seeking environments remains unclear. Understanding these characteristics could inform the design of more effective interventions powered by artificial intelligence to address online support seekers? unique therapeutic needs. Objective: We aimed to uncover associations between EMSs and mental health problems within OMHCs and examine features of EMSs as they are reflected in OMHCs. Methods: We curated a dataset of 29,329 posts from widely accessed OMHCs, labeling each with relevant schemas and mental health problems. To identify associations, we conducted chi-square tests of independence and calculated odds ratios (ORs) with the dataset. In addition, we developed a novel group-level case conceptualization technique, leveraging GPT-4 to extract features of EMSs from OMHC texts across key schema therapy dimensions, such as schema triggers and coping responses. Results: Several associations were identified between EMSs and mental health problems, reflecting how EMSs manifest in online support-seeking contexts. Anxiety-related problems typically highlighted vulnerability to harm or illness (OR 5.64, 95% CI 5.34-5.96; P<.001), while depression-related problems emphasized unmet interpersonal needs, such as social isolation (OR 3.18, 95% CI 3.02-3.34; P<.001). Conversely, problems with eating disorders mostly exemplified negative self-perception and emotional inhibition (OR 1.89, 95% CI 1.45-2.46; P<.001). Personality disorders reflected themes of subjugation (OR 2.51, 95% CI 1.86-3.39; P<.001), while posttraumatic stress disorder problems involved distressing experiences and mistrust (OR 5.04, 95% CI 4.49-5.66; P<.001). Substance use disorder problems reflected negative self-perception of failure to achieve (OR 1.83, 95% CI 1.35-2.49; P<.001). Depression, personality disorders, and posttraumatic stress disorder were also associated with 12, 9, and 7 EMSs, respectively, emphasizing their complexities and the need for more comprehensive interventions. In contrast, anxiety, eating disorder, and substance use disorder were related to only 2 to 3 EMSs, suggesting that these problems are better addressed through targeted interventions. In addition, the EMS features extracted from our dataset averaged 13.27 (SD 3.05) negative features per schema, with 2.65 (SD 1.07) features per dimension, as supported by existing literature. Conclusions: We uncovered various associations between EMSs and mental health problems among online support seekers, highlighting the prominence of specific EMSs in each problem and the unique complexities of each problem in terms of EMSs. We also identified EMS features as expressed by support seekers in OMHCs, reinforcing the relevance of EMSs in these online support-seeking contexts. These insights are valuable for understanding how EMS are characterized in OMHCs and can inform the development of more effective artificial intelligence?powered tools to enhance support on these platforms. UR - https://www.jmir.org/2025/1/e59524 UR - http://dx.doi.org/10.2196/59524 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59524 ER - TY - JOUR AU - Ananya, Ananya AU - Tuuli, Janina AU - Perowne, Rachel AU - Gutman, Morrison Leslie PY - 2025/2/5 TI - Barriers and Facilitators to User Engagement and Moderation for Web-Based Peer Support Among Young People: Qualitative Study Using the Behavior Change Wheel Framework JO - JMIR Hum Factors SP - e64097 VL - 12 KW - internet KW - moderation KW - engagement KW - youth KW - teenager KW - adolescent KW - peer support KW - web-based group KW - user engagement KW - support group KW - barrier KW - facilitator KW - Theoretical Domains Framework KW - Behavior Change Wheel KW - qualitative KW - interview KW - behavior change technique KW - thematic analysis N2 - Background: Peer support groups or web-based chats for young people offer anonymous peer support in judgment-free spaces, where users may share their thoughts and feelings with others who may have experienced similar situations. User engagement is crucial for effective web-based peer support; however, levels of engagement vary. While moderation of peer support groups can have a positive impact on the engagement of young people, effective moderation can be challenging to implement. Objective: This study aimed to identify barriers and facilitators to user engagement with, and moderation of, web-based peer support groups among young people aged 16 to 25 years and to provide recommendations for enhancing this service. Methods: Drawing upon the Theoretical Domains Framework (TDF) and the Behavior Change Wheel (BCW), this study conducted qualitative interviews and gathered open-ended questionnaires from service users and moderators of The Mix, the United Kingdom?s leading web-based mental health platform providing peer support groups for young people. Semistructured interviews were conducted with 2 service users and 8 moderators, and open-ended questionnaires were completed by 7 service users. Themes were coded using the Capability, Opportunity, Motivation, and Behavior (COM-B) model and the TDF. The BCW tools were then used to identify relevant behavior change techniques to improve user engagement in, and moderation of, the service. Results: Thematic analysis revealed a total of 20 inductive themes within 10 TDF domains?9 (45%) for engagement and 11 (55%) for moderation. Of these 20 themes, 3 (15%) were facilitators of engagement, 7 (35%) were facilitators of moderation, 4 (20%) were barriers to moderation, and 6 (30%) barriers to engagement. Results suggest that skills, knowledge, beliefs about consequences, intentions, emotions, and the social and physical environment are important factors influencing service users and moderators of group chats. In particular, supporting the improvement of memory, attention, and decision-making skills of those involved; adapting the physical environment to facilitate effective interactions; and reducing negative emotions are suggested to optimize the value and effectiveness of peer support groups for young people?s mental health for both the service users and moderators of these services. Conclusions: The study demonstrates the effectiveness of the BCW approach and the use of the TDF and COM-B model to understand the influences on behavior in a systematic manner, especially for mental health and well-being interventions. The findings can be applied to design structured interventions to change behaviors related to the engagement with, and moderation of, web-based peer support groups and, in turn, improve mental health outcomes for young people. UR - https://humanfactors.jmir.org/2025/1/e64097 UR - http://dx.doi.org/10.2196/64097 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/64097 ER - TY - JOUR AU - Tong, Chau AU - Margolin, Drew AU - Niederdeppe, Jeff AU - Chunara, Rumi AU - Liu, Jiawei AU - Jih-Vieira, Lea AU - King, J. Andy PY - 2025/2/3 TI - Colorectal Cancer Racial Equity Post Volume, Content, and Exposure: Observational Study Using Twitter Data JO - J Med Internet Res SP - e63864 VL - 27 KW - racial equity information KW - information exposure KW - health disparities KW - colorectal cancer KW - cancer communication KW - Twitter KW - X N2 - Background: Racial inequity in health outcomes, particularly in colorectal cancer (CRC), remains one of the most pressing issues in cancer communication and public health. Social media platforms like Twitter (now X) provide opportunities to disseminate health equity information widely, yet little is known about the availability, content, and reach of racial health equity information related to CRC on these platforms. Addressing this gap is essential to leveraging social media for equitable health communication. Objective: This study aims to analyze the volume, content, and exposure of CRC racial health equity tweets from identified CRC equity disseminator accounts on Twitter. These accounts were defined as those actively sharing information related to racial equity in CRC outcomes. By examining the behavior and impact of these disseminators, this study provides insights into how health equity content is shared and received on social media. Methods: We identified accounts that posted CRC-related content on Twitter between 2019 and 2021. Accounts were classified as CRC equity disseminators (n=798) if they followed at least 2 CRC racial equity organization accounts. We analyzed the volume and content of racial equity?related CRC tweets (n=1134) from these accounts and categorized them by account type (experts vs nonexperts). Additionally, we evaluated exposure by analyzing follower reach (n=6,266,269) and the role of broker accounts?accounts serving as unique sources of CRC racial equity information to their followers. Results: Among 19,559 tweets posted by 798 CRC equity disseminators, only 5.8% (n=1134) mentioned racially and ethnically minoritized groups. Most of these tweets (641/1134, 57%) addressed disparities in outcomes, while fewer emphasized actionable content, such as symptoms (11/1134, 1%) or screening procedures (159/1134, 14%). Expert accounts (n=479; 716 tweets) were more likely to post CRC equity tweets compared with nonexpert accounts (n=319; 418 tweets). Broker accounts (n=500), or those with a substantial portion of followers relying on them for equity-related information, demonstrated the highest capacity for exposing followers to CRC equity content, thereby extending the reach of these critical messages to underserved communities. Conclusions: This study emphasizes the critical roles played by expert and broker accounts in disseminating CRC racial equity information on social media. Despite the limited volume of equity-focused content, broker accounts were crucial in reaching otherwise unexposed audiences. Public health practitioners should focus on encouraging equity disseminators to share more actionable information, such as symptoms and screening benefits, and implement measures to amplify the reach of such content on social media. Strengthening these efforts could help bridge disparities in cancer outcomes among racially minoritized groups. UR - https://www.jmir.org/2025/1/e63864 UR - http://dx.doi.org/10.2196/63864 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63864 ER - TY - JOUR AU - Guo, Lin AU - Li, Yunwei AU - Cheng, Kai AU - Zhao, Ying AU - Yin, Wenqiang AU - Liu, Ying PY - 2025/1/31 TI - Impact of Internet Usage on Depression Among Older Adults: Comprehensive Study JO - J Med Internet Res SP - e65399 VL - 27 KW - internet usage KW - depression KW - older people KW - mechanism KW - heterogeneity KW - mobile phone N2 - Background: Depression is a widespread mental health issue affecting older adults globally, with substantial implications for their well-being. Although digital interventions have proven effective in high-income countries, research on the potential of internet usage to alleviate depression among older adults in high-income countries remains limited. Objective: This study aimed to examine the impact of internet usage on depression among older adults in high-income countries by developing a comprehensive theoretical framework and testing key hypotheses. Methods: Using data from the China Health and Retirement Longitudinal Study (CHARLS), a 2-stage instrumental variable approach was applied to address endogeneity and estimate causal relationships between internet usage and depression. Results: The findings indicate that internet usage results in a 1.41% reduction in depression levels among older adults. This effect is mediated by four primary mechanisms: (1) enhanced social interaction, (2) increased physical activity, (3) improved intergenerational contact, and (4) expanded access to educational opportunities. A heterogeneity analysis revealed that these effects are more pronounced in urban areas, eastern regions, and regions with superior internet infrastructure. Conclusions: Internet usage plays a crucial role in alleviating depression among older adults in high-income countries, with regional variations. The findings highlight the need for targeted policy interventions to improve internet access and digital literacy, which can mitigate depression and enhance the mental health of older adults. UR - https://www.jmir.org/2025/1/e65399 UR - http://dx.doi.org/10.2196/65399 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/65399 ER - TY - JOUR AU - Tjernberg, Johanna AU - Helgesson, Sara AU - Håkansson, Anders AU - Hansson, Helena PY - 2025/1/31 TI - Exploring the Users? Perspective of the Nationwide Self-Exclusion Service for Gambling Disorder, ?Spelpaus?: Qualitative Interview Study JO - JMIR Hum Factors SP - e66045 VL - 12 KW - gambling disorder KW - gambling addiction KW - behavioral addiction KW - harm reduction KW - self-exclusion KW - voluntary self-exclusion KW - Spelpaus KW - lived experience KW - human factors KW - usability KW - qualitative study N2 - Background: Problem gambling and gambling disorder cause severe social, psychiatric, and financial consequences, and voluntary self-exclusion is a common harm reduction tool used by individuals with gambling problems. Objective: The aim of this study was to explore users? experience of a novel nationwide, multioperator gambling self-exclusion service, ?Spelpaus,? in Sweden and to inform stakeholders and policy makers in order to improve harm reduction tools against gambling problems. Methods: Semistructured interviews were conducted with 15 individuals who reported self-perceived gambling problems and who had experience of having used the self-exclusion service Spelpaus in Sweden. Interviews were transcribed and analyzed through qualitative content analysis. Results: We identified 3 categories and 8 subcategories. The categories were (1) reasons for the decision to self-exclude, (2) positive experiences, and (3) suggestions for improvement. The subcategories identified a number of reasons for self-exclusion, such as financial reasons and family reasons, and positive experiences described as a relief from gambling; in addition, important suggestions for improvement were cited, such as a more gradual return to gambling post?self-exclusion, better ways to address loopholes in the system, and transfer from self-exclusion to treatment. Conclusions: Voluntary self-exclusion from gambling, using a nationwide multioperator service, remains an appreciated harm-reducing tool. However, transfer from self-exclusion to treatment should be facilitated by policy making, and loopholes allowing for breaching of the self-exclusion need to be counteracted. UR - https://humanfactors.jmir.org/2025/1/e66045 UR - http://dx.doi.org/10.2196/66045 UR - http://www.ncbi.nlm.nih.gov/pubmed/39888656 ID - info:doi/10.2196/66045 ER - TY - JOUR AU - Tran, T. Jennifer AU - Webster, Jessica AU - Wolfe, R. James AU - Ben Nathan, Jennifer AU - Mayinja, Lindiwe AU - Kautz, Marin AU - Oquendo, A. Maria AU - Brown, K. Gregory AU - Mandell, David AU - Mowery, Danielle AU - Bauermeister, A. José AU - Brown, A. Lily PY - 2025/1/29 TI - Experiences of Peer Mentoring Sexual and Gender Minority Emerging Adults Who Are at Risk for Suicide: Mixed Methods Study JO - JMIR Form Res SP - e67814 VL - 9 KW - suicide prevention KW - peer mentorship KW - LGBTQIA health KW - mental health N2 - Background: Sexual and Gender Diverse Youth (SGDY) are at increased risk for suicide due to unique experiences including discrimination, family or friend rejection, and low positive affect. Peer mentors (PMs) may offer a unique opportunity for intervention but are underutilized for suicide prevention among SGDY. Objective: Little is known about the training needed for PMs when working with SGDY at risk for suicide. We developed an intervention, Supporting Transitions to Adulthood and Reducing Suicide (STARS), to improve suicide prevention among SGDY and increase social support, coping, and positive effects. PMs were trained by a licensed clinical therapist and provided a manual. PMs meet virtually for 6 weeks, providing social support, strategies to diminish the impact of discrimination, connection to safe spaces, and reinforcement of intentions to use Safety Plans with mentees. Methods: To understand PMs? experiences in their role, including distress, fidelity to the manual, and perceptions of feasibility and acceptability of STARS and mentees? Safety Plan, we collected survey data from mentees and PMs as well as in-depth interviews with PMs after the completion of the intervention. Results: As of September 2024, all peer mentees (N=64) have completed the study and all PMs have finished providing sessions for peer mentees. PMs (n=5) reported overall high comfort (8.52) and low distress (1.93) during sessions. All 5 PMs had high fidelity (>90%) to the PM intervention training. All 5 PMs reported high feasibility (17.50), acceptability (20), and appropriateness (20) of the STARS intervention. Mentees (n=27) reported high confidence ratings (3.54) in speaking with their PMs. Conclusions: Peer mentorship for SGDY who are at risk for suicide was feasible and acceptable by PMs and mentees alike. PMs reported that they felt comfortable and confident during the sessions. Mentees also reported confidence in working with their PMs. Future research should explore the optimal strategies to support PMs and mentees as they engage in suicide prevention work as well as incorporate feedback from the PMs in this study to ensure optimal outcomes. Trial Registration: ClinicalTrials.gov NCT05018143; https://clinicaltrials.gov/study/NCT05018143 International Registered Report Identifier (IRRID): RR2-10.2196/48177 UR - https://formative.jmir.org/2025/1/e67814 UR - http://dx.doi.org/10.2196/67814 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/67814 ER - TY - JOUR AU - Thiessen, Maclean AU - Jewitt, Kellie AU - Stromberg, Raina AU - Lamontagne, Marie Janelle AU - Richardson Tanguay, Genevieve AU - Albo, Annette AU - Thurston, Chantale AU - McMillan, E. Diana PY - 2025/1/29 TI - Constructing TheKeep.Ca With Thrivers of Cancer in Manitoba, Canada, in Support of Enhancing Patient Engagement: Protocol for a Pragmatic Multimethods Study JO - JMIR Res Protoc SP - e63597 VL - 14 KW - patient engagement KW - patient empowerment KW - translational research KW - patient recruitment KW - development and research KW - protocol KW - Manitoba KW - Canada KW - cancer KW - patient advisor KW - website KW - research platform KW - thematic analysis KW - semi-structured interview KW - online infrastructure N2 - Background: TheKeep.Ca was built to facilitate engagement with those experiencing cancer in Manitoba, Canada. Constructed between 2020 and 2024 with a group of patient advisors, the website includes information on engagement activities including research participation, the patient advisor role, and how those experiencing cancer can access these Manitoba activities. A link allows visitors to register to be contacted about activities that match their demographics, cancer history, and activity preferences. After TheKeep.Ca was constructed, this protocol was developed to establish TheKeep.Ca as a platform for scientific research focused on optimally engaging those experiencing cancer. Objective: We asked the following questions: (1) What was the patient advisors? experience who participated in developing TheKeep.Ca? (2) What are the baseline characteristics of website traffic and registrants at TheKeep.Ca? (3) How does registering with TheKeep.Ca impact the cancer experience? Methods: The planned launch date for the website and initiation of research activities is January 2025. For objective 1, the active patient advisors (N=6) participating in the website project will be invited to participate in project activities including with responses to a question prompt sheet, semistructured audio-recorded interviews, or both. Responses and interviews will be analyzed using reflexive thematic analysis to understand and inform practices for patient engagement on projects. At the website launch, TheKeep.Ca will become publicly accessible and indexable on internet search engines, but no additional promotional interventions will take place in the initial 6 months resulting in visitors primarily from web search traffic. For objective 2, Google Analytics and website registrant data collected during the first six months will be analyzed to obtain baseline characteristics of website visitors. For objective 3, an online survey will be emailed to registrants six months after the website launch characterizing their website experience, the activities they participated in, and collecting feedback on the website. For objectives 2 and 3, quantitative data will be analyzed using both descriptive and inferential statistics, and qualitative data from open-ended questions will be analyzed using thematic analysis guided by an inductive descriptive semantic approach. Results: This study was approved by the University of Manitoba Health Research Ethics Board on December 12, 2024 (HS26614-H2024L263). Institutional approval from CancerCare Manitoba is pending as of December 23, 2024. Findings from objective 1 are expected to be finalized within the first six months after the website launch. Those from objectives 2 and 3 are expected by the 12-month mark. Reporting will include peer-reviewed journals, conferences, and a lay-language summary on TheKeep.Ca. Conclusions: The research outlined in this protocol will facilitate understanding patient advisors? experience in developing TheKeep.Ca. It will also characterize the website? effectiveness and its impact on the cancer experience, providing a baseline and direction for future research and development. International Registered Report Identifier (IRRID): PRR1-10.2196/63597 UR - https://www.researchprotocols.org/2025/1/e63597 UR - http://dx.doi.org/10.2196/63597 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63597 ER - TY - JOUR AU - Chan, J. Garrett AU - Fung, Mark AU - Warrington, Jill AU - Nowak, A. Sarah PY - 2025/1/29 TI - Understanding Health-Related Discussions on Reddit: Development of a Topic Assignment Method and Exploratory Analysis JO - JMIR Form Res SP - e55309 VL - 9 KW - digital health KW - internet KW - open data KW - social networking KW - social media N2 - Background: Social media has become a widely used way for people to share opinions about health care and medical topics. Social media data can be leveraged to understand patient concerns and provide insight into why patients may turn to the internet instead of the health care system for health advice. Objective: This study aimed to develop a method to investigate Reddit posts discussing health-related conditions. Our goal was to characterize these topics and identify trends in these social media?based medical discussions. Methods: Using an initial query, we collected 1 year of Reddit posts containing the phrases ?get tested? and ?get checked.? These posts were manually reviewed, and subreddits containing irrelevant posts were excluded from analysis. This selection of posts was manually read by the investigators to categorize posts into topics. A script was developed to automatically assign topics to additional posts based on keywords. Topic and keyword selections were refined based on manual review for more accurate topic assignment. Topic assignment was then performed on the entire 1-year Reddit dataset containing 347,130 posts. Related topics were grouped into broader medical disciplines. Analysis of the topic assignments was then conducted to assess condition and medical topic frequencies in medical condition?focused subreddits and general subreddits. Results: We created an automated algorithm to assign medical topics to Reddit posts. By iterating through multiple rounds of topic assignment, we improved the accuracy of the algorithm. Ultimately, this algorithm created 82 topics sorted into 17 broader medical disciplines. Of all topics, sexually transmitted infections (STIs), eye disorders, anxiety, and pregnancy had the highest post frequency overall. STIs comprised 7.44% (5876/78,980) of posts, and anxiety comprised 5.43% (4289/78,980) of posts. A total of 34% (28/82) of the topics comprised 80% (63,184/78,980) of all posts. Of the medical disciplines, those with the most posts were psychiatry and mental health; genitourinary and reproductive health; infectious diseases; and endocrinology, nutrition, and metabolism. Psychiatry and mental health comprised 26.6% (21,009/78,980) of posts, and genitourinary and reproductive health comprised 13.6% (10,741/78,980) of posts. Overall, most posts were also classified under these 4 medical disciplines. During analysis, subreddits were also classified as general if they did not focus on a specific health issue and topic-specific if they discussed a specific medical issue. Topics that appeared most frequently in the top 5 in general subreddits included addiction and drug anxiety, attention-deficit/hyperactivity disorder, abuse, and STIs. In topic-specific subreddits, most posts were found to discuss the topic of that subreddit. Conclusions: Certain health topics and medical disciplines are predominant on Reddit. These include topics such as STIs, eye disorders, anxiety, and pregnancy. Most posts were classified under the medical disciplines of psychiatry and mental health, as well as genitourinary and reproductive health. UR - https://formative.jmir.org/2025/1/e55309 UR - http://dx.doi.org/10.2196/55309 UR - http://www.ncbi.nlm.nih.gov/pubmed/39879094 ID - info:doi/10.2196/55309 ER - TY - JOUR AU - Spiegel, Y. Daphna AU - Friesner, D. Isabel AU - Zhang, William AU - Zack, Travis AU - Yan, Gianna AU - Willcox, Julia AU - Prionas, Nicolas AU - Singer, Lisa AU - Park, Catherine AU - Hong, C. Julian PY - 2025/1/28 TI - Exploring the Social Media Discussion of Breast Cancer Treatment Choices: Quantitative Natural Language Processing Study JO - JMIR Cancer SP - e52886 VL - 11 KW - breast cancer KW - social media KW - patient decision-making KW - natural language processing KW - breast conservation KW - mastectomy N2 - Background: Early-stage breast cancer has the complex challenge of carrying a favorable prognosis with multiple treatment options, including breast-conserving surgery (BCS) or mastectomy. Social media is increasingly used as a source of information and as a decision tool for patients, and awareness of these conversations is important for patient counseling. Objective: The goal of this study was to compare sentiments and associated emotions in social media discussions surrounding BCS and mastectomy using natural language processing (NLP). Methods: Reddit posts and comments from the Reddit subreddit r/breastcancer and associated metadata were collected using pushshift.io. Overall, 105,231 paragraphs across 59,416 posts and comments from 2011 to 2021 were collected and analyzed. Paragraphs were processed through the Apache Clinical Text Analysis Knowledge Extraction System and identified as discussing BCS or mastectomy based on physician-defined Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT) concepts. Paragraphs were analyzed with a VADER (Valence Aware Dictionary for Sentiment Reasoning) compound sentiment score (ranging from ?1 to 1, corresponding to negativity or positivity) and GoEmotions scores (0?1) corresponding to the intensity of 27 different emotions and neutrality. Results: Of the 105,231 paragraphs, there were 7306 (6.94% of those analyzed) paragraphs mentioning BCS and mastectomy (2729 and 5476, respectively). Discussion of both increased over time, with BCS outpacing mastectomy. The median sentiment score for all discussions analyzed in aggregate became more positive over time. In specific analyses by topic, positive sentiments for discussions with mastectomy mentions increased over time; however, discussions with BCS-specific mentions did not show a similar trend and remained overall neutral. Compared to BCS, conversations about mastectomy tended to have more positive sentiments. The most commonly identified emotions included neutrality, gratitude, caring, approval, and optimism. Anger, annoyance, disappointment, disgust, and joy increased for BCS over time. Conclusions: Patients are increasingly participating in breast cancer therapy discussions with a web-based community. While discussions surrounding mastectomy became increasingly positive, BCS discussions did not show the same trend. This mirrors national clinical trends in the United States, with the increasing use of mastectomy over BCS in early-stage breast cancer. Recognizing sentiments and emotions surrounding the decision-making process can facilitate patient-centric and emotionally sensitive treatment recommendations. UR - https://cancer.jmir.org/2025/1/e52886 UR - http://dx.doi.org/10.2196/52886 ID - info:doi/10.2196/52886 ER - TY - JOUR AU - Liao, Jiaman AU - Huang, Xueliang AU - Huang, Hao AU - Shen, Cuina AU - Li, Lixia AU - Li, Yushao AU - Zhan, Yiqiang PY - 2025/1/20 TI - Analysis of ?Dr Ding Xiang? on WeChat in China to Determine Factors Influencing Readership on Medical Social Media: Observational Study JO - J Med Internet Res SP - e65372 VL - 27 KW - WeChat Official Accounts KW - Dr Ding Xiang KW - health communication KW - information dissemination KW - readership analysis N2 - Background: With the rapid expansion of social media platforms, the demand for health information has increased substantially, leading to innovative approaches and new opportunities in health education. Objective: This study aims to analyze the characteristics of articles published on the ?Dr Ding Xiang? WeChat official account (WOA), one of the most popular institutional accounts on the WeChat platform, to identify factors influencing readership engagement and to propose strategies for enhancing the effectiveness of health information dissemination. Methods: A total of 5286 articles published on the ?Dr Ding Xiang? WOA from January 2021 to December 2021 were collected and analyzed. Additionally, a random sample of 324 articles was selected for detailed text analysis. Univariate analysis was conducted using the chi-square test, and multivariate analysis was performed using multivariable logistic regression. Results: In 2021, the total number of reads for ?Dr Ding Xiang? articles reached 323,479,841, with an average of 61,196 reads per article. Articles exceeding 100,000 reads accounted for 33.90% of the total. Most articles were published during the time slots of 8:00-10:00 AM, 11:30 AM to 1:30 PM, and 8:30-10:30 PM. Analysis indicated that the order of publication, style of the title sentence, number of likes, number of in-views, total likes on comments, and number of replies to comments were significantly associated with an article?s number of reads. Text analysis further revealed that the article?s reasoning approaches and concluding methods also had a significant impact on readership. Conclusions: To enhance readership and the effectiveness of health communication, health-focused WOAs should consider key factors such as optimal publication timing, engaging title design, and effective content structuring. Attention to these elements can improve user engagement and support the broader dissemination of health information. UR - https://www.jmir.org/2025/1/e65372 UR - http://dx.doi.org/10.2196/65372 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/65372 ER - TY - JOUR AU - Hswen, Yulin AU - Qin, Qiuyuan AU - Smith, Pressley AU - Swierczynski, Alison AU - Bauer, Stuart AU - Ladson, Erika AU - Garrett, Leigh Amanda AU - Brownstein, A. Catherine PY - 2025/1/17 TI - Sentiments of Individuals with Interstitial Cystitis/Bladder Pain Syndrome Toward Pentosan Polysulfate Sodium: Infodemiology Study JO - JMIR Form Res SP - e54209 VL - 9 KW - interstitial cystitis KW - IC KW - painful bladder syndrome KW - bladder pain syndrome KW - BPS KW - social media KW - social network KW - pain KW - treatment KW - chronic condition KW - chronic disease KW - chronic illness KW - Elmiron KW - pentosan polysulfate sodium KW - PPS KW - internet forum N2 - Background: Interstitial cystitis/bladder pain syndrome (IC/BPS) is a multifactorial, chronic syndrome involving urinary frequency, urgency, and bladder discomfort. These IC/BPS symptoms can significantly impact individuals? quality of life, affecting their mental, physical, sexual, and financial well-being. Individuals sometimes rely on peer-to-peer support to understand the disease and find methods of alleviating symptoms. The only US Food and Drug Administration?approved medication to treat IC/BPS is pentosan polysulfate sodium (PPS). However, ocular pigmentary maculopathy has been described in some individuals, with greater severity associated with prolonged PPS exposure. Objective: While prior research has separately assessed the benefits and side effects of PPS, this study sought to identify (1) sentiments of individuals with IC/BPS toward PPS and (2) topics discussed by individuals with IC/BPS in conjunction with PPS through use of an internet peer-to-peer forum. Methods: Data were collected from Inspire?an anonymous web-based health community where individuals gather by condition to find support and information. Sentiment analysis and percentages of negative, positive, and neutral sentiment for PPS discussions encompassing each topic was conducted using VADER (Valence Aware Dictionary for Sentiment Reasoning). Topic modeling was conducted using latent Dirichlet allocation. Words with the highest probability were ranked to categorize each topic, and authors manually investigated and labeled discussions. Results: There were 354 forum posts related to PPS. Topic modeling with latent Dirichlet allocation revealed 5 topic categories: ?ineffectiveness or discontinued use,? ?alternative treatments,? ?personal treatment suggestions based on experience,? ?severe side effects,? and ?risk of long-term use.? Topics related to ?severe side effects? and ?risk of long-term use? garnered less discussion, with the former also having the lowest positive sentiment (4.28, 14.29%). The topic ?ineffectiveness or discontinued use? was most frequently discussed. This topic also had the highest percentage of negative posts (52/152, 34.21%). However, the average compound score was within the neutral compound score range (?0.094, SD 0.625). In addition, forum data highlighted individuals? acknowledgment of the efficacy of PPS in improving their quality of life, with statements such as ?saved my sanity? being representative. The overall compound individuals? sentiment toward PPS was ?0.083, split across 32.49% (115/354) negative, 22.03% (78/354) positive, and 45.48% (161/354) neutral sentiment categories. Conclusions: The overall authentic sentiment toward PPS is broad but balances to neutral. This neutral sentiment suggests that while some individuals express concerns about the side effects and long-term risks associated with PPS, others appreciate its positive impact on their quality of life. This research confirms that individuals with IC/BPS actively engage with health forums like Inspire to seek information, share their experiences, and explore different treatment options. As IC/BPS remains a complex syndrome, this study highlights the value of patient-led discussions in informing treatment decisions. Furthermore, these findings suggest that health care providers might benefit from considering the insights shared on peer-to-peer forums to better understand individual preferences, concerns, and expectations. UR - https://formative.jmir.org/2025/1/e54209 UR - http://dx.doi.org/10.2196/54209 ID - info:doi/10.2196/54209 ER - TY - JOUR AU - Foster, L. Michelle AU - Egwuonwu, Chinenye AU - Vernon, Erin AU - Alarifi, Mohammad AU - Hughes, Courtney M. PY - 2025/1/17 TI - Informal Caregivers Connecting on the Web: Content Analysis of Posts on Discussion Forums JO - JMIR Form Res SP - e64757 VL - 9 KW - informal caregivers KW - family caregivers KW - discussion forum KW - caregiver support KW - support group KW - social support KW - caregiver navigation KW - content analysis KW - adults KW - United States KW - informal care KW - codebook KW - thematic analysis KW - web-based discussion KW - web-based forums KW - clinicians KW - medical care KW - peer-to-peer support KW - web-based communities KW - caregivers N2 - Background: About 53 million adults in the United States offer informal care to family and friends with disease or disability. Such care has an estimated economic value of US $600 million. Most informal caregivers are not paid nor trained in caregiving, with many experiencing higher-than-average levels of stress and depression and lower levels of physical health. Some informal caregivers participate in web-based forums related to their caregiving role. Objective: This study aimed to explore how informal caregivers use easy-to-access caregiving web-based forums, including the types of information they share and seek from others. It also aimed to gain insights into the informal caregiver experience from the content these informal caregivers posted. Methods: The study population consisted of participants who posted on 5 web-based forums for informal caregivers between February and April 2024. Researchers extracted the first 6 responses to the first 20 questions and comments to appear posted by the informal caregivers in each of the 5 forums, removing any individually identifying information. We used a codebook thematic analysis approach to examine the data with Dedoose (SocioCultural Research Consultants). Researchers independently read all posts and coded the data. The author group discussed the codes, reiteratively refined them, and identified themes within the data. Results: The data consisted of 100 initial posts and 600 responses. Over half of the initial posts included specific questions, with the remaining initial posts sharing experiences or reflections. Posts ranged in length from a sentence to more than 500 words. Domains identified included handling interpersonal challenges, navigating complicated systems, gathering tactical coping strategies, managing emotions, and connecting with others in similar situations. Negative interpersonal interactions were mentioned 123 times, with 77 posts describing challenging situations with extended family. Posters inquired about accessing resources, with health care and health insurance included 51 times, while legal and financial concerns were addressed 124 times. Caregiving challenges were mentioned hundreds of times, including discussion of hygiene (n=18), nutrition (n=21), and desire for a caregiving break (n=47). Posters expressed emotion in their comments 180 times, which included 32 mentions of guilt and 26 mentions of positive emotion. The importance of web-based group support was mentioned 301 times. Conclusions: Informal caregivers play an essential role in society. Many experience multifaceted challenges related to their caregiving role, and some turn to the internet for community. Accessing web-based discussion forums is a low-barrier method for informal caregivers to connect with others who may be experiencing similar emotions and challenges. Gaining a greater understanding of the ways informal caregivers seek advice and offer support to one another provides insight into the challenges they face. The domains identified on these forums may be helpful, as clinicians provide information to care recipients and their informal caregivers along their health journeys. UR - https://formative.jmir.org/2025/1/e64757 UR - http://dx.doi.org/10.2196/64757 ID - info:doi/10.2196/64757 ER - TY - JOUR AU - Huijgens, Fiorella AU - Kwakman, Pascale AU - Hillen, Marij AU - van Weert, Julia AU - Jaspers, Monique AU - Smets, Ellen AU - Linn, Annemiek PY - 2025/1/16 TI - How Patients With Cancer Use the Internet to Search for Health Information: Scenario-Based Think-Aloud Study JO - JMIR Infodemiology SP - e59625 VL - 5 KW - web-based health information seeking KW - think aloud KW - scenario based KW - cancer KW - patient evaluation KW - information seeking KW - web-based information KW - health information KW - internet KW - pattern KW - motivation KW - cognitive KW - emotional KW - response KW - patient KW - survivor KW - caregiver KW - interview KW - scenario KW - women KW - men N2 - Background: Patients with cancer increasingly use the internet to seek health information. However, thus far, research treats web-based health information seeking (WHIS) behavior in a rather dichotomous manner (ie, approaching or avoiding) and fails to capture the dynamic nature and evolving motivations that patients experience when engaging in WHIS throughout their disease trajectory. Insights can be used to support effective patient-provider communication about WHIS and can lead to better designed web-based health platforms. Objective: This study explored patterns of motivations and emotions behind the web-based information seeking of patients with cancer at various stages of their disease trajectory, as well as the cognitive and emotional responses evoked by WHIS via a scenario-based, think-aloud approach. Methods: In total, 15 analog patients were recruited, representing patients with cancer, survivors, and informal caregivers. Imagining themselves in 3 scenarios?prediagnosis phase (5/15, 33%), treatment phase (5/15, 33%), and survivor phase (5/15, 33%)?patients were asked to search for web-based health information while being prompted to verbalize their thoughts. In total, 2 researchers independently coded the sessions, categorizing the codes into broader themes to comprehend analog patients? experiences during WHIS. Results: Overarching motives for WHIS included reducing uncertainty, seeking reassurance, and gaining empowerment. At the beginning of the disease trajectory, patients mainly showed cognitive needs, whereas this shifted more toward affective needs in the subsequent disease stages. Analog patients? WHIS approaches varied from exploratory to focused or a combination of both. They adapted their search strategy when faced with challenging cognitive or emotional content. WHIS triggered diverse emotions, fluctuating throughout the search. Complex, confrontational, and unexpected information mainly induced negative emotions. Conclusions: This study provides valuable insights into the motivations of patients with cancer underlying WHIS and the emotions experienced at various stages of the disease trajectory. Understanding patients? search patterns is pivotal in optimizing web-based health platforms to cater to specific needs. In addition, these findings can guide clinicians in accommodating patients? specific needs and directing patients toward reliable sources of web-based health information. UR - https://infodemiology.jmir.org/2025/1/e59625 UR - http://dx.doi.org/10.2196/59625 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59625 ER - TY - JOUR AU - Li, Min AU - Gu, Dongxiao AU - Li, Rui AU - Gu, Yadi AU - Liu, Hu AU - Su, Kaixiang AU - Wang, Xiaoyu AU - Zhang, Gongrang PY - 2025/1/14 TI - The Impact of Linguistic Signals on Cognitive Change in Support Seekers in Online Mental Health Communities: Text Analysis and Empirical Study JO - J Med Internet Res SP - e60292 VL - 27 KW - mental health KW - online communities KW - cognitive change KW - signaling theory KW - text analysis N2 - Background: In online mental health communities, the interactions among members can significantly reduce their psychological distress and enhance their mental well-being. The overall quality of support from others varies due to differences in people?s capacities to help others. This results in some support seekers? needs being met, while others remain unresolved. Objective: This study aimed to examine which characteristics of the comments posted to provide support can make support seekers feel better (ie, result in cognitive change). Methods: We used signaling theory to model the factors affecting cognitive change and used consulting strategies from the offline, face-to-face psychological counseling process to construct 6 characteristics: intimacy, emotional polarity, the use of first-person words, the use of future-tense words, specificity, and language style. Through text mining and natural language processing (NLP) technology, we identified linguistic features in online text and conducted an empirical analysis using 12,868 online mental health support reply data items from Zhihu to verify the effectiveness of those features. Results: The findings showed that support comments are more likely to alter support seekers? cognitive processes if those comments have lower intimacy (?intimacy=?1.706, P<.001), higher positive emotional polarity (?emotional_polarity=.890, P<.001), lower specificity (?specificity=?.018, P<.001), more first-person words (?first-person=.120, P<.001), more future- and present-tense words (?future-words=.301, P<.001), and fewer function words (?linguistic_style=?.838, P<.001). The result is consistent with psychotherapists? psychotherapeutic strategy in offline counseling scenarios. Conclusions: Our research contributes to both theory and practice by proposing a model to reveal the factors that make support seekers feel better. The findings have significance for support providers. Additionally, our study offers pointers for managing and designing online communities for mental health. UR - https://www.jmir.org/2025/1/e60292 UR - http://dx.doi.org/10.2196/60292 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/60292 ER - TY - JOUR AU - Shmueli-Scheuer, Michal AU - Silverman, Yedidya AU - Halperin, Israel AU - Gepner, Yftach PY - 2025/1/13 TI - Analysis of Reddit Discussions on Motivational Factors for Physical Activity: Cross-Sectional Study JO - J Med Internet Res SP - e54489 VL - 27 KW - motivation KW - physical activity KW - social media KW - Reddit KW - adherence N2 - Background: Despite the ample benefits of physical activity (PA), many individuals do not meet the minimum PA recommended by health organizations. Structured questionnaires and interviews are commonly used to study why individuals perform PA and their strategies to adhere to PA. However, certain biases are inherent to these tools that limit what can be concluded from their results. Collecting data from social media channels can complement these studies and provide a more comprehensive overview of PA motives and adherence strategies. Objective: This study aims to investigate motives for engaging in PA, as well as the associated strategies to achieve these goals, as stated by a large number of people on a social media site. Methods: We searched for users? responses regarding PA motives and adherence strategies in Reddit forums dedicated to PA and analyzed the data using (1) unsupervised clustering to identify topics from the textual comments and (2) supervised classification to classify the comments into the detected topics. A panel of experts participated in both steps for annotation and validation purposes. Results: We analyzed 1577 unique user comments (representing 1577 individual users); of those, 1247 were linked to physical appearance (mentioned in 298/1247, 23.9% of the comments) and improving physical (235/1247, 18.9%) and mental health (211/1247, 16.9%), indicating these as the main motivational factors. The main strategies people used to adhere to PA were habit formation (373/1247, 30%), goal setting (173/1247, 13.9%), enjoyable activities (151/1247, 12.1%), socializing (121/1247, 9.7%), using media (111/1247, 8.9%), using different apps to monitor PA (35/1247, 2.8%), and financial commitment (32/1247, 2.5%). Conclusions: This study presented a novel approach using a language model to investigate why people engage in PA and the strategies they use to adhere to PA using wide-scale, self-disclosed content from popular social media channels. UR - https://www.jmir.org/2025/1/e54489 UR - http://dx.doi.org/10.2196/54489 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/54489 ER - TY - JOUR AU - Schnitzspahn, Katharina AU - Abdulla, Kahar AU - Arensman, Ella AU - Van Audenhove, Chantal AU - Mere, Rainer AU - Pérez Sola, Victor AU - Sisask, Merike AU - Székely, András AU - Toczyski, Piotr AU - Hegerl, Ulrich PY - 2025/1/10 TI - Community-Based 4-Level Intervention Targeting Depression and Suicidal Behavior in Europe: Protocol for an Implementation Project JO - JMIR Res Protoc SP - e64218 VL - 14 KW - depression KW - suicide KW - mental health KW - European Alliance Against Depression KW - EAAD KW - 4-level community-based intervention KW - iFightDepression KW - cognitive behavioral therapy KW - mHealth N2 - Background: The community-based, 4-level intervention of the European Alliance Against Depression (EAAD) is simultaneously addressing depression and suicidal behavior. Intervention activities target primary care health professionals (level 1), the general public (level 2), community facilitators (level 3), and patients and their relatives (level 4). Activities comprise the digital iFightDepression tool, a guided self-management tool based on cognitive behavioral therapy. Objective: This study aimed to present the European Union?cofunded EAAD-Best study protocol, aiming at the implementation, dissemination, and evaluation of the 4-level intervention and the iFightDepression tool in several countries across Europe. Methods: The 4-level intervention has been implemented for the first time in Bulgaria, Estonia, Greece, and Poland. In 3 countries that have already implemented the 4-level intervention (Hungary, Ireland, and Spain), activities have been extended to new regions. In addition, the nationwide uptake of the iFightDepression tool by patients with depression has been promoted in all mentioned countries and Italy. Results: To evaluate the implementation of the 4-level intervention and the iFightDepression tool, data related to the process, output, and outcome were collected between 2022 and 2024. Data processing and analyses started in 2023. Analyses are expected to be completed in 2024. Results are expected to be published in 2025. Conclusions: This paper informs researchers, practitioners, and stakeholders on how to implement best practices in mental health promotion and evaluate their effectiveness. International Registered Report Identifier (IRRID): DERR1-10.2196/64218 UR - https://www.researchprotocols.org/2025/1/e64218 UR - http://dx.doi.org/10.2196/64218 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/64218 ER - TY - JOUR AU - Cummins, A. Jack AU - Gottlieb, J. Daniel AU - Sofer, Tamar AU - Wallace, A. Danielle PY - 2025/1/9 TI - Applying Natural Language Processing Techniques to Map Trends in Insomnia Treatment Terms on the r/Insomnia Subreddit: Infodemiology Study JO - J Med Internet Res SP - e58902 VL - 27 KW - insomnia KW - natural language processing KW - NLP KW - social media KW - cognitive behavioral therapy KW - CBT KW - sleep initiation KW - sleep disorder KW - easly awakening KW - sleep aids KW - benzodiazepines KW - trazodone KW - antidepressants KW - melatonin KW - treatment N2 - Background: People share health-related experiences and treatments, such as for insomnia, in digital communities. Natural language processing tools can be leveraged to understand the terms used in digital spaces to discuss insomnia and insomnia treatments. Objective: The aim of this study is to summarize and chart trends of insomnia treatment terms on a digital insomnia message board. Methods: We performed a natural language processing analysis of the r/insomnia subreddit. Using Pushshift, we obtained all r/insomnia subreddit comments from 2008 to 2022. A bag of words model was used to identify the top 1000 most frequently used terms, which were manually reduced to 35 terms related to treatment and medication use. Regular expression analysis was used to identify and count comments containing specific words, followed by sentiment analysis to estimate the tonality (positive or negative) of comments. Data from 2013 to 2022 were visually examined for trends. Results: There were 340,130 comments on r/insomnia from 2008, the beginning of the subreddit, to 2022. Of the 35 top treatment and medication terms that were identified, melatonin, cognitive behavioral therapy for insomnia (CBT-I), and Ambien were the most frequently used (n=15,005, n=13,461, and n=11,256 comments, respectively). When the frequency of individual terms was compared over time, terms related to CBT-I increased over time (doubling from approximately 2% in 2013-2014 to a peak of over 5% of comments in 2018); in contrast, terms related to nonprescription over-the-counter (OTC) sleep aids (such as Benadryl or melatonin) decreased over time. CBT-I?related terms also had the highest positive sentiment and showed a spike in frequency in 2017. Terms with the most positive sentiment included ?hygiene? (median sentiment 0.47, IQR 0.31-0.88), ?valerian? (median sentiment 0.47, IQR 0-0.85), and ?CBT? (median sentiment 0.42, IQR 0.14-0.82). Conclusions: The Reddit r/insomnia discussion board provides an alternative way to capture trends in both prescription and nonprescription sleep aids among people experiencing sleeplessness and using social media. This analysis suggests that language related to CBT-I (with a spike in 2017, perhaps following the 2016 recommendations by the American College of Physicians for CBT-I as a treatment for insomnia), benzodiazepines, trazodone, and antidepressant medication use has increased from 2013 to 2022. The findings also suggest that the use of OTC or other alternative therapies, such as melatonin and cannabis, among r/insomnia Reddit contributors is common and has also exhibited fluctuations over time. Future studies could consider incorporating alternative data sources in addition to prescription medication to track trends in prescription and nonprescription sleep aid use. Additionally, future prospective studies of insomnia should consider collecting data on the use of OTC or other alternative therapies, such as cannabis. More broadly, digital communities such as r/insomnia may be useful in understanding how social and societal factors influence sleep health. UR - https://www.jmir.org/2025/1/e58902 UR - http://dx.doi.org/10.2196/58902 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58902 ER - TY - JOUR AU - Singh, Tavleen AU - Roberts, Kirk AU - Fujimoto, Kayo AU - Wang, Jing AU - Johnson, Constance AU - Myneni, Sahiti PY - 2025/1/7 TI - Toward Personalized Digital Experiences to Promote Diabetes Self-Management: Mixed Methods Social Computing Approach JO - JMIR Diabetes SP - e60109 VL - 10 KW - digital health communities KW - diabetes self-management KW - behavior change KW - affiliation exposure KW - social networks KW - deep learning N2 - Background: Type 2 diabetes affects nearly 34.2 million adults and is the seventh leading cause of death in the United States. Digital health communities have emerged as avenues to provide social support to individuals engaging in diabetes self-management (DSM). The analysis of digital peer interactions and social connections can improve our understanding of the factors underlying behavior change, which can inform the development of personalized DSM interventions. Objective: Our objective is to apply our methodology using a mixed methods approach to (1) characterize the role of context-specific social influence patterns in DSM and (2) derive interventional targets that enhance individual engagement in DSM. Methods: Using the peer messages from the American Diabetes Association support community for DSM (n=~73,000 peer interactions from 2014 to 2021), (1) a labeled set of peer interactions was generated (n=1501 for the American Diabetes Association) through manual annotation, (2) deep learning models were used to scale the qualitative codes to the entire datasets, (3) the validated model was applied to perform a retrospective analysis, and (4) social network analysis techniques were used to portray large-scale patterns and relationships among the communication dimensions (content and context) embedded in peer interactions. Results: The affiliation exposure model showed that exposure to community users through sharing interactive communication style speech acts had a positive association with the engagement of community users. Our results also suggest that pre-existing users with type 2 diabetes were more likely to stay engaged in the community when they expressed patient-reported outcomes and progress themes (communication content) using interactive communication style speech acts (communication context). It indicates the potential for targeted social network interventions in the form of structural changes based on the user?s context and content exchanges with peers, which can exert social influence to modify user engagement behaviors. Conclusions: In this study, we characterize the role of social influence in DSM as observed in large-scale social media datasets. Implications for multicomponent digital interventions are discussed. UR - https://diabetes.jmir.org/2025/1/e60109 UR - http://dx.doi.org/10.2196/60109 ID - info:doi/10.2196/60109 ER - TY - JOUR AU - Cleal, Bryan AU - Chen, Yanbing AU - Wäldchen, Mandy AU - Ballhausen, Hanne AU - Cooper, Drew AU - O'Donnell, Shane AU - Knoll, Christine AU - Krug, Niklas AU - Raile, Klemens AU - Ubben, Tebbe AU - Tappe, Adrian AU - Lewis, Dana AU - Willaing, Ingrid AU - Skinner, Timothy AU - Braune, Katarina PY - 2025/1/6 TI - Examining the Emotional and Physical Health Impact in Users of Open-Source Automated Insulin Delivery and Sources of Support: Qualitative Analysis of Patient Narratives JO - J Med Internet Res SP - e48406 VL - 27 KW - automated insulin delivery KW - diabetes technology KW - type 1 diabetes KW - insulin pumps KW - continuous glucose monitoring KW - peer support KW - community support KW - open source KW - impact KW - users KW - diabetes KW - emotional health KW - challenges KW - support KW - unmet needs KW - mobile phone N2 - Background: Although commercially developed automated insulin delivery (AID) systems have recently been approved and become available in a limited number of countries, they are not universally available, accessible, or affordable. Therefore, open-source AID systems, cocreated by an online community of people with diabetes and their families behind the hashtag #WeAreNotWaiting, have become increasingly popular. Objective: This study focused on examining the lived experiences, physical and emotional health implications of people with diabetes following the initiation of open-source AID systems, their perceived challenges, and their sources of support, which have not been explored in the existing literature. Methods: We collected data from 383 participants across 29 countries through 2 sets of open-ended questions in a web-based survey on their experience of building and using open-source AID systems. Narratives were thematically analyzed, and a coding framework was identified through iterative alignment. Results: Participants consistently reported improvements in glycemia, physical health, sleep quality, emotional impact on everyday life, and quality of life. Knowledge of open-source AID systems was largely obtained through the #WeAreNotWaiting community, which was also the primary source of practical and emotional support. The acquisition of the components to build an open-source AID system and the technical setup were sometimes problematic. Conclusions: The #WeAreNotWaiting movement represents a primary example of how informed and connected patients proactively address their unmet needs, provide peer support to each other, and obtain results through impactful, user-driven solutions. Alongside providing evidence on the safety and efficacy of open-source AID systems, this qualitative analysis helps in understanding how patients? experiences and benefits range from psychosocial improvements to a reduction in the burden of managing diabetes. International Registered Report Identifier (IRRID): RR2-10.2196/15368 UR - https://www.jmir.org/2025/1/e48406 UR - http://dx.doi.org/10.2196/48406 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/48406 ER - TY - JOUR AU - Montoya, Alana AU - Mao, Lingchao AU - Drewnowski, Adam AU - Chen, Joshua AU - Shi, Ella AU - Liang, Aileen AU - Weiner, J. Bryan AU - Su, Yanfang PY - 2024/12/30 TI - Influencers in Policy Fields on Social Media: Global Longitudinal Study of Dietary Sodium Reduction Posts, 2006-2022 JO - J Med Internet Res SP - e54506 VL - 26 KW - policy field KW - sodium intake KW - sodium consumption KW - cardiovascular disease KW - social media KW - health education KW - health promotion KW - dissemination KW - influence KW - Twitter KW - X KW - activity KW - priority KW - originality KW - popularity N2 - Background: Excessive sodium intake is a major concern for global public health. Despite multiple dietary guidelines, population sodium intakes are above recommended levels. Lack of health literacy could be one contributing issue and contemporary health literacy is largely shaped by social media. Objective: This study aims to quantify the posting behaviors and influence patterns on dietary sodium?related content by influencers in the policy field on X (formerly Twitter) across time. Methods: We first identified X users with a scope of work related to dietary sodium and retrieved their posts (formerly Tweets) from 2006 to 2022. Users were categorized into the policy groups of outer-setting organization, inner-setting organization, or individual, based on their role in the conceptual policy field. Network analysis was used to analyze interactions among users and identify the top influencers in each policy group. A 4D influence framework was applied to measure the overall influence, activity, priority, originality, and popularity scores. These measures were used to reveal the user-level, group-level, and temporal patterns of sodium-related influence. Results: We identified 78 users with content related to dietary sodium, with 1,099,605 posts in total and 14,732 dietary sodium posts. There was an increasing volume of sodium posts from 2010 to 2015; however, the trend has been decreasing since 2016, especially among outer-setting organizations. The top influencers from the three policy groups were the World Health Organization (WHO), the American Heart Association, and Tom Frieden. Simon Capewell and the WHO ranked the highest in activity; the World Action on Salt, Sugar, and Health and Action on Salt had the highest priority for dietary sodium content; General Mills and Tom Frieden had the highest originality; and WHO, Harvard University School of Medicine, and Tom Frieden received the highest popularity. Outer-setting organizations tend to interact with more users in the network compared to inner-setting organizations and individuals, while inner-setting organizations tend to receive more engagements from other users in the network than the other two groups. Monthly patterns showed a significant peak in the number of sodium posts in March compared with other months. Conclusions: Despite the increased use of social media, recent trends of sodium intake education on social media are decreasing and the priority of sodium among other topics is low. To improve policy implementation effectiveness and meet recommended dietary targets, there is an increasing need for health leaders to consistently and collectively advocate for sodium intake reduction on social media. UR - https://www.jmir.org/2024/1/e54506 UR - http://dx.doi.org/10.2196/54506 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/54506 ER - TY - JOUR AU - Doyle, A. Tom AU - Vershaw, L. Samantha AU - Conboy, Erin AU - Halverson, E. Colin M. PY - 2024/12/30 TI - Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases JO - JMIR Hum Factors SP - e57833 VL - 11 KW - social media KW - rare disease KW - support groups KW - pediatric rare disease KW - Ehlers-Danlos syndrome KW - collagen disease KW - fibrillar collagen KW - cutis elastica KW - connective tissue disorders KW - hyperelasticity KW - hypermobility of joints, inherited KW - genetic disorder KW - genetics KW - pediatric N2 - Background: The rarity that is inherent in rare disease (RD) often means that patients and parents of children with RDs feel uniquely isolated and therefore are unprepared or unsupported in their care. To overcome this isolation, many within the RD community turn to the internet, and social media groups in particular, to gather useful information about their RDs. While previous research has shown that social media support groups are helpful for those affected by RDs, it is unclear what these groups are particularly useful or helpful for patients and parents of children with RDs. Objective: This study aimed to identify what specific features of disease-related support groups (DRSGs) the RD community finds particularly useful or supportive and provide a set of recommendations to improve social media?based RD support groups based on this information. Methods: Semistructured qualitative interviews were performed with patients and parents of patients with RDs. Interview participants had to be at least 18 years of age at the time of the interview, be seen by a genetics specialist at a partner health care institution and be proficient in the English language. Social media use was not a prerequisite for participation, so interview participants ranged from extensive users of social media to those who chose to remain off all social media. All interviews were conducted by phone, recorded, and then transcribed. Interview transcripts were then coded using the 6 steps outlined by Braun and Clarke. Three researchers (TAD, SLV, and CMEH) performed initial coding. After this, the study team conducted a review of themes and all members of the team agreed upon a final analysis and presentation of data. Results: We conducted 31 interviews (mean age 40, SD 10.04 years; n=27, 87% were women; n=30, 97% were non-Hispanic White). Thematic analysis revealed that social media DRSG users identified the informational usefulness of these groups as being related to the gathering and sharing of specific information about an RD, clarification about the importance and meaning of certain symptoms, and obtaining insight into an RD?s progression and prognosis. Participants also identified that DRSGs were useful sources of practical information, such as tips and tricks about managing RD-related issues and concerns. In addition, participants found DRSGs to be a useful space for sharing their disease-related stories but also highlighted a feeling of exhaustion from overexposure and overuse of DRSGs. Conclusions: This study identifies the usefulness of DRSGs for the RD community and provides a set of recommendations to improve future instances of DRSGs. These recommendations can be used to create DRSGs that are less prone to splintering into other DRSGs, thus minimizing the risk of having important RD-related information unhelpfully dispersed amongst a multitude of support groups. UR - https://humanfactors.jmir.org/2024/1/e57833 UR - http://dx.doi.org/10.2196/57833 UR - http://www.ncbi.nlm.nih.gov/pubmed/39752188 ID - info:doi/10.2196/57833 ER - TY - JOUR AU - Lally, Phillippa AU - May, N. Christine AU - Mitchell, Siobhan E. AU - McCallum, Meaghan AU - Michaelides, Andreas AU - Fisher, Abigail PY - 2024/12/20 TI - Prototype of an App Designed to Support Self-Management for Health Behaviors and Weight in Women Living With Breast Cancer: Qualitative User Experience Study JO - JMIR Cancer SP - e48170 VL - 10 KW - breast cancer KW - self-management KW - app KW - health behaviors KW - weight KW - prototype KW - user experience KW - development KW - application KW - coaching KW - peer support KW - oncology N2 - Background: Accessible self-management interventions are required to support people living with breast cancer. Objective: This was an industry-academic partnership study that aimed to collect qualitative user experience data of a prototype app with built-in peer and coach support designed to support the management of health behaviors and weight in women living with breast cancer. Methods: Participants were aged ?18 years, were diagnosed with breast cancer of any stage within the last 5 years, had completed active treatment, and were prescribed oral hormone therapy. Participants completed demographic surveys and were asked to use the app for 4 weeks. Following this, they took part in in-depth qualitative interviews about their experiences. These were analyzed using thematic analysis. Results: Eight participants (mean age, 45 years; mean time since diagnosis, 32 months) were included. Of the 8 participants, 7 (88%) were white, 6 (75%) had a graduate degree or above, and 6 (75%) had stage I-III breast cancer. Four overarching themes were identified: (1) Support for providing an app earlier in the care pathway; (2) Desire for more weight-focused content tailored to the breast cancer experience; (3) Tracking of health behaviors that are generally popular; and (4) High value of in-app social support. Conclusions: This early user experience work showed that women with breast cancer found an app with integrated social and psychological support appealing to receive support for behavior change and weight management or self-management. However, many features were recommended for further development. This work is the first step in an academic-industry collaboration that would ultimately aim to develop and empirically test a supportive app that could be integrated into the cancer care pathway. UR - https://cancer.jmir.org/2024/1/e48170 UR - http://dx.doi.org/10.2196/48170 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/48170 ER - TY - JOUR AU - Lazard, J. Allison AU - Vereen, N. Rhyan AU - Zhou, Jieni AU - Nichols, B. Hazel AU - Pulido, Marlyn AU - Swift, Catherine AU - Dasgupta, Nabarun AU - Fredrickson, L. Barbara PY - 2024/12/20 TI - Designing Positive Psychology Interventions for Social Media: Cross-Sectional Web-Based Experiment With Young Adults With Cancer JO - JMIR Cancer SP - e48627 VL - 10 KW - young adult KW - cancer survivors KW - social media KW - positive psychology KW - acceptability KW - feasibility KW - youth KW - cancer KW - psychosocial KW - self-efficacy KW - social connection KW - positive emotion KW - emotion KW - social engagement N2 - Background: Young adults (ages 18?39 years) with cancer face unique risks for negative psychosocial outcomes. These risks could be lessened with positive psychology interventions adapted for social media if intervention messages encourage intentions to do the activities and positive message reactions and if young adults with cancer perceive few downsides. Objective: This study aimed to assess whether social media messages from evidence-based positive psychology interventions encouraged intentions to do the intervention activities and intended positive message reactions, overall and among sociodemographic or cancer characteristic subgroups. We also aimed to identify perceived downsides of the activity that would negatively impact the interventions? feasibility. Methods: Young adults (ages 18?39 years, cancer diagnosis ages 15?39 years) were randomized to a between-persons web-based experiment. Participants viewed a social media message with social context cues (vs not) for 1 of 2 types of intervention (acts of kindness vs social connectedness). Participants reported intentions to do the activity, along with their perceived social presence in the message (how much they felt the sense of others) and forecasted positivity resonance (whether they would experience socially connected positive emotions when doing the activity), with 5-point items. Participants also reported their self-efficacy (how certain they can do the intervention activity) with a 0?100 item and potential downsides of the activity categorically. Results: More than 4 out of 5 young adults with cancer (N=396) reported they ?somewhat? (coded as 3) to ?extremely? (5) intended to do the intervention activity (336/396, 84.8%; mean ranged from 3.4?3.6, SD 0.9-1.0), perceived social presence in the messages (350/396, 88.4%; mean 3.8, SD 0.7), and forecasted positivity resonance (349/396, 88.1%; mean 3.8?3.9, SD 0.8). Participants reported having self-efficacy to complete the activity (mean 70.7% of possible 100%, SD 15.4%?17.2%). Most (320/396, 80.8%) did not think of the downsides of the interventions. Messages with social context cues (vs not) and both intervention types were rated similarly (all P>.05). Black young adults reported lower intentions, perceived social presence, and forecasted positivity resonance than White young adults (all P<.001). Participants in active treatment (vs completed) reported greater intentions to do the activities (P<.001). Conclusions: Positive psychology intervention messages adapted for social media were perceived as acceptable and feasible among young adults with cancer. The social media?based messages encouraged increasing one?s social connectedness and performing acts of kindness. Young adults with cancer also predicted they would have feelings of positive social engagement (positivity resonance) when doing the interventions?the key ingredient for experiencing the health benefits of these activities. This study provides promising evidence for the development of age-appropriate, highly scalable interventions to improve psychosocial health among young adults with cancer. UR - https://cancer.jmir.org/2024/1/e48627 UR - http://dx.doi.org/10.2196/48627 ID - info:doi/10.2196/48627 ER - TY - JOUR AU - Wallraf, Simon AU - Dierks, Marie-Luise AU - John, Cosima AU - Lander, Jonas PY - 2024/12/20 TI - Patient Organizations? Digital Responses to the COVID-19 Pandemic: Scoping Review JO - J Med Internet Res SP - e58566 VL - 26 KW - patient organizations KW - COVID-19 KW - digital adaptation KW - digital transformation KW - scoping review N2 - Background: Patient organizations (POs) play a crucial role in supporting individuals with health conditions. Their activities range from counseling to support groups to advocacy. The COVID-19 pandemic and its related public health measures prompted rapid digital transformation efforts across multiple sectors, including health care. Objective: This study aimed to explore how POs digitally responded to pandemic-related circumstances, focusing on aspects such as the technologies used, positive outcomes, and challenges encountered. Methods: This scoping review followed the methodological guidance of the JBI (Joanna Briggs Institute) Scoping Review Methodology Group and adhered to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) reporting guidelines. A systematic search of PubMed, the Web of Science Core Collection, and the WHO (World Health Organization) COVID-19 database, supplemented by a citation search approach, was conducted. The initial search was performed on November 10, 2022, and updated on November 8, 2023. Publications were eligible if they were published after November 30, 2019, and addressed pandemic-related digitalization efforts of POs, defined as nonprofit organizations with a focus on health-related support. A 2-step screening process was used to identify relevant literature. Data were extracted using a standardized table to capture aspects such as digital adaptation activities (eg, types of technologies implemented, positive outcomes, challenges, and facilitating factors) and coded inductively to identify similarities across included publications, and the findings were synthesized narratively. Results: The search and its subsequent update yielded 2212 records, with 13 articles included in this review. These articles revealed a range of PO services that were digitally adapted during the pandemic, with videoconferencing software emerging as the most commonly used tool (n=9 articles). The digital adaptation of group-based support activities was the most frequently reported transformation (n=9). Other adaptations included the digitalization of counseling services (n=3) and the delivery of information and education (n=3), including educational workshops, weekly webinars, and the dissemination of information through digital newsletters. While the use of digital formats, particularly for POs? group activities, often increased accessibility by breaking down preexisting barriers (n=5), they also created new barriers for certain groups, such as those lacking digital skills or resources (n=4). Some participants experienced a loss of interpersonal aspects, like a sense of community (n=3). However, further findings suggest that the digital delivery of such group activities preserved essential interpersonal aspects (n=7) and a preference among some participants to continue digital group activities (n=4), suggesting the potential for sustainability of such options post the COVID-19 pandemic. Conclusions: The rapid digitalization efforts of POs demonstrate their adaptability and the potential of digital technologies to improve support services, despite some challenges. Future digitalization strategies should focus, among other things, on promoting digital literacy to ensure the accessibility and inclusiveness of digital services. Trial Registration: OSF Registries, https://osf.io/anvf4 UR - https://www.jmir.org/2024/1/e58566 UR - http://dx.doi.org/10.2196/58566 UR - http://www.ncbi.nlm.nih.gov/pubmed/39705075 ID - info:doi/10.2196/58566 ER - TY - JOUR AU - Pagoto, Sherry AU - Xu, Ran AU - Bannor, Richard AU - Idiong, Christie AU - Goetz, Jared AU - Fernandes, Denise PY - 2024/12/19 TI - Comparing Synchronous and Asynchronous Remotely Delivered Lifestyle Interventions: Protocol for a Randomized Noninferiority Trial JO - JMIR Res Protoc SP - e65323 VL - 13 KW - obesity KW - lifestyle intervention KW - digital health KW - weight loss maintenance KW - engagement KW - mobile phone N2 - Background: Remotely delivered lifestyle interventions have emerged to increase the reach and accessibility of traditional interventions that involve numerous in-person visits. Remote interventions can be delivered synchronously via videoconference software or phone or asynchronously via online platforms. Asynchronously delivered interventions are convenient and flexible in that they allow people to participate at any time and as such, they may be more sustainable. Evidence for asynchronous interventions is needed given their potential for convenience and sustainability, which may have implications for weight loss maintenance. Objective: This is a randomized noninferiority trial comparing 2 remotely delivered lifestyle interventions: one that is delivered synchronously via videoconference meetings and one that is delivered asynchronously through private Facebook (Meta) groups. We hypothesize that the percent weight loss difference between conditions at 6 and 12 months will be less than 2% and that the asynchronous condition will cost less to deliver per pound lost. We also hypothesize that engagement will be higher in the asynchronous condition at 12, 18, and 24 months and that the asynchronous condition will have greater weight loss at 24 months. Methods: We will randomize 328 participants with overweight or obesity to a remotely delivered lifestyle intervention that is delivered either synchronously or asynchronously. Delivery of the synchronous lifestyle intervention will be via videoconference group sessions, whereas the delivery of the asynchronous lifestyle intervention will be via private Facebook groups. The lifestyle intervention in both conditions is based on the Diabetes Prevention Program. The intervention goals are to lose 5%-10% of baseline weight and to work toward 300 minutes per week of moderate intensity physical activity. The core intervention will last for 12 months and be led by counselors in each group. This will be followed by a 12-month maintenance phase to be led by participant volunteers from each group. Participant engagement and weight loss maintenance will be assessed during this phase. The primary outcome is mean percent weight loss at 6 and 12 months. The noninferiority margin for differences in weight loss between conditions is 2% at both 6 and 12 months. We will model percent weight loss at 6 and 12 months using general linear regression models with the intent-to-treat sample. Secondary outcomes include engagement, collective efficacy, cost, and weight loss at 18 and 24 months. Results: The funding period began on August 17, 2023, and the study was approved by the University of Connecticut Institutional Review Board on August 17, 2023. Participant recruitment will begin December 2024 and the intervention will begin February 2024. Conclusions: If hypotheses are confirmed, this work will provide evidence that asynchronously delivered remote interventions are as efficacious as synchronously delivered ones and more sustainable such that people will engage in them longer and retain more weight loss for less cost. Trial Registration: ClinicalTrials.gov NCT06393725; https://tinyurl.com/4kzzwkc9 International Registered Report Identifier (IRRID): PRR1-10.2196/65323 UR - https://www.researchprotocols.org/2024/1/e65323 UR - http://dx.doi.org/10.2196/65323 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/65323 ER - TY - JOUR AU - Onishi, Ryuta PY - 2024/12/19 TI - Parental Information-Use Strategies in a Digital Parenting Environment and Their Associations With Parental Social Support and Self-Efficacy: Cross-Sectional Study JO - JMIR Pediatr Parent SP - e58757 VL - 7 KW - parenting KW - information use KW - digital society KW - online information KW - social support KW - self-efficacy KW - parents KW - surveys KW - information seeking KW - information behaviors KW - resources KW - children KW - youth KW - pediatric N2 - Background: In today?s digital society, the acquisition of parenting information through online platforms such as social networking sites (SNSs) has become widespread. Amid the mix of online and offline information sources, there is a need to discover effective information-seeking methods for solving parenting problems. Objective: This study aimed to identify patterns of information use among parents of young children in the digital age and elucidate the characteristics of these patterns through a comparative analysis of parental social support and self-efficacy. Methods: An internet-based survey was administered to fathers and mothers of children aged 0-3 years. Convenience sampling, facilitated by an internet-based survey company, was adopted, and data from 227 fathers and 206 mothers were analyzed. The survey included questions on personal characteristics, frequency of use of different sources of parenting information (websites, SNSs, parenting apps, family, friends, and professionals), availability of parental social support, and parental self-efficacy. The Partitioning Around Medoids (PAM) clustering algorithm was used to identify patterns in parenting information use. Results: A total of 4 clusters were identified: multisource gatherers (n=161), offline-centric gatherers (n=105), online-centric gatherers (n=86), and minimal information gatherers (n=68). The availability of parental social support was perceived to be relatively higher among multisource and offline-centric gatherers compared with online-centric and minimal information gatherers. Parental self-efficacy was highest among multisource gatherers, followed by offline-centric and online-centric gatherers, and lowest among minimal information gatherers. Conclusions: This study contributes to the evidence that online information can effectively complement offline information in addressing parenting challenges, although its ability to fully replace offline sources remains limited. Parenting support professionals are encouraged to understand parents? current information use strategies and actively foster their social relationships, helping them to adopt more diverse and comprehensive approaches to information use. UR - https://pediatrics.jmir.org/2024/1/e58757 UR - http://dx.doi.org/10.2196/58757 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58757 ER - TY - JOUR AU - Khoshnaw, Sara AU - Panzarasa, Pietro AU - De Simoni, Anna PY - 2024/12/17 TI - Metaphor Diffusion in Online Health Communities: Infodemiology Study in a Stroke Online Health Community JO - JMIR Cardio SP - e53696 VL - 8 KW - online health community KW - social capital KW - metaphor KW - stroke KW - OHC KW - novelty KW - passive analysis KW - stroke survivor KW - self-promotion KW - post-stroke KW - information diffusion N2 - Background: Online health communities (OHCs) enable patients to create social ties with people with similar health conditions outside their existing social networks. Harnessing mechanisms of information diffusion in OHCs has attracted attention for its ability to improve illness self-management without the use of health care resources. Objective: We aimed to analyze the novelty of a metaphor used for the first time in an OHC, assess how it can facilitate self-management of post-stroke symptoms, describe its appearance over time, and classify its diffusion mechanisms. Methods: We conducted a passive analysis of posts written by UK stroke survivors and their family members in an online stroke community between 2004 and 2011. Posts including the term ?legacy of stroke? were identified. Information diffusion was classified according to self-promotion or viral spread mechanisms and diffusion depth (the number of users the information spreads out to). Linguistic analysis was performed through the British National Corpus and the Google search engine. Results: Post-stroke symptoms were referred to as ?legacy of stroke.? This metaphor was novel and appeared for the first time in the OHC in the second out of a total of 3459 threads. The metaphor was written by user A, who attributed it to a stroke consultant explaining post-stroke fatigue. This user was a ?superuser? (ie, a user with high posting activity) and self-promoted the metaphor throughout the years in response to posts written by other users, in 51 separate threads. In total, 7 users subsequently used the metaphor, contributing to its viral diffusion, of which 3 were superusers themselves. Superusers achieved the higher diffusion depths (maximum of 3). Of the 7 users, 3 had been part of threads where user A mentioned the metaphor, while 2 users had been part of discussion threads in unrelated conversations. In total, 2 users had not been part of threads with any of the other users, suggesting that the metaphor was acquired through prior lurking activity. Conclusions: Metaphors that are considered helpful by patients with stroke to come to terms with their symptoms can diffuse in OHCs through both self-promotion and social (or viral) spreading, with the main driver of diffusion being the superuser trait. Lurking activity (the most common behavior in OHCs) contributed to the diffusion of information. As an increasing number of patients with long-term conditions join OHCs to find others with similar health-related concerns, improving clinicians? and researchers? awareness of the diffusion of metaphors that facilitate self-management in health social media may be beneficial beyond the individual patient. UR - https://cardio.jmir.org/2024/1/e53696 UR - http://dx.doi.org/10.2196/53696 ID - info:doi/10.2196/53696 ER - TY - JOUR AU - Fan, Lizhou AU - Li, Lingyao AU - Hemphill, Libby PY - 2024/12/12 TI - Toxicity on Social Media During the 2022 Mpox Public Health Emergency: Quantitative Study of Topical and Network Dynamics JO - J Med Internet Res SP - e52997 VL - 26 KW - social media KW - network analysis KW - pandemic risk KW - health care analytics KW - infodemiology KW - infoveillance KW - health communication KW - mpox N2 - Background: Toxicity on social media, encompassing behaviors such as harassment, bullying, hate speech, and the dissemination of misinformation, has become a pressing social concern in the digital age. Its prevalence intensifies during periods of social crises and unrest, eroding a sense of safety and community. Such toxic environments can adversely impact the mental well-being of those exposed and further deepen societal divisions and polarization. The 2022 mpox outbreak, initially called ?monkeypox? but later renamed to reduce stigma and address societal concerns, provides a relevant context for this issue. Objective: In this study, we conducted a comprehensive analysis of the toxic online discourse surrounding the 2022 mpox outbreak. We aimed to dissect its origins, characterize its nature and content, trace its dissemination patterns, and assess its broader societal implications, with the goal of providing insights that can inform strategies to mitigate such toxicity in future crises. Methods: We collected >1.6 million unique tweets and analyzed them with 5 dimensions: context, extent, content, speaker, and intent. Using topic modeling based on bidirectional encoder representations from transformers and social network community clustering, we delineated the toxic dynamics on Twitter. Results: By categorizing topics, we identified 5 high-level categories in the toxic online discourse on Twitter, including disease (20,281/43,521, 46.6%), health policy and health care (8400/43,521, 19.3%), homophobia (10,402/43,521, 23.9%), politics (2611/43,521, 6%), and racism (1784/43,521, 4.1%). Across these categories, users displayed negativity or controversial views on the mpox outbreak, highlighting the escalating political tensions and the weaponization of stigma during this infodemic. Through the toxicity diffusion networks of mentions (17,437 vertices with 3628 clusters), retweets (59,749 vertices with 3015 clusters), and the top users with the highest in-degree centrality, we found that retweets of toxic content were widespread, while influential users rarely engaged with or countered this toxicity through retweets. Conclusions: Our study introduces a comprehensive workflow that combines topical and network analyses to decode emerging social issues during crises. By tracking topical dynamics, we can track the changing popularity of toxic content on the internet, providing a better understanding of societal challenges. Network dynamics highlight key social media influencers and their intentions, suggesting that engaging with these central figures in toxic discourse can improve crisis communication and guide policy making. UR - https://www.jmir.org/2024/1/e52997 UR - http://dx.doi.org/10.2196/52997 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/52997 ER - TY - JOUR AU - Szeto, D. Mindy AU - Alhanshali, Lina AU - Rundle, W. Chandler AU - Adelman, Madeline AU - Hook Sobotka, Michelle AU - Woolhiser, Emily AU - Wu, Jieying AU - Presley, L. Colby AU - Maghfour, Jalal AU - Meisenheimer, John AU - Anderson, B. Jaclyn AU - Dellavalle, P. Robert PY - 2024/12/11 TI - Dermatologic Data From the Global Burden of Disease Study 2019 and the PatientsLikeMe Online Support Community: Comparative Analysis JO - JMIR Dermatol SP - e50449 VL - 7 KW - Global Burden of Disease KW - GBD KW - PatientsLikeMe KW - PLM KW - online support communities KW - forums KW - users KW - social media KW - internet KW - demographics KW - lived experience KW - disability-adjusted life year KW - DALY KW - prevalence KW - dermatology KW - comparative analysis UR - https://derma.jmir.org/2024/1/e50449 UR - http://dx.doi.org/10.2196/50449 ID - info:doi/10.2196/50449 ER - TY - JOUR AU - Liu, Xuan AU - Chi, Xiaotong AU - Chen, Ming AU - Sun, Wen AU - Li, Jia PY - 2024/12/10 TI - Spillover Effects of Paid Functions on Physicians? Unpaid Knowledge Activities: Quasi-Experimental Approach JO - J Med Internet Res SP - e58688 VL - 26 KW - health knowledge contribution KW - economic incentives KW - diversity KW - propensity score matching KW - multi-period difference in differences N2 - Background: To promote sustained contributions by physicians to online health care communities, these platforms have introduced a content payment model that offers economic incentives for physicians? online knowledge activities. However, the impact of these paid features on unpaid knowledge activities remains unexplored. Objective: This study investigated how the introduction of economic incentives in online medical communities affects physicians? unpaid knowledge activities in the community. Methods: The data for this study were obtained from the Haodf Online platform in China, which has implemented paid scenarios for its science popularization function, providing economic benefits to physicians. The dataset, which comprises panel data, includes 7453 physicians who participated in both paid and unpaid knowledge contributions on the website. This study examined the impact of paid knowledge activities on physicians? free knowledge contributions, focusing on dimensions including knowledge quantity, quality, and diversity. To address the timing discrepancies in physicians? participation in paid activities, we used a quasi-experimental design that combined the approach of propensity score matching and multi-period difference in differences. Results: In the balance test results of the propensity score matching, the absolute values of the SDs of all matching variables were mostly <5% after matching, ensuring the accuracy of the results obtained from the difference in differences method. This study found that participation in paid knowledge activities had a positive spillover effect on physicians? free knowledge contributions, which manifested in the increase in post quantity (473.1%; P<.001), article length (108%; P=.009), function word frequency (0.6%; P=.001), causal word frequency (0.2%; P<.001), and content information entropy (6.6%; P=.006). The paid function led to a decrease in the consistency between titles and content (?115.5%; P<.001). Conclusions: The findings of this study contribute to the existing literature on the impact of economic incentives in the medical context. For the platform, providing economic incentives to physicians can have positive significance in promoting the development of the platform?s knowledge ecosystem and can effectively encourage physicians to contribute to both paid and free knowledge activities. This study provides a valuable reference for the platform to introduce a paid knowledge model, which is beneficial to the sustainable development of the platform. UR - https://www.jmir.org/2024/1/e58688 UR - http://dx.doi.org/10.2196/58688 UR - http://www.ncbi.nlm.nih.gov/pubmed/39656521 ID - info:doi/10.2196/58688 ER - TY - JOUR AU - Dubbelman, Julia AU - Ooms, Jonelle AU - Havgry, Laura AU - Simonse, Lianne PY - 2024/12/10 TI - Communal Load Sharing of Miscarriage Experiences: Thematic Analysis of Social Media Community Support JO - J Med Internet Res SP - e56680 VL - 26 KW - miscarriage KW - miscarriage grief KW - online health communities KW - thematic analysis KW - social support KW - communal load sharing KW - peer-to-peer support N2 - Background: Miscarriage is a common experience, affecting 15% of recognized pregnancies, but societal ignorance and taboos often downplay the mental distress and personal impact following a miscarriage. Emerging stories on social media in which women express their miscarriage grief are breaking such taboos. Research in the area of online health communities is increasingly focused on studying how people share their health experiences on social media. However, a clear understanding on the social support involved in this type of sharing of health experiences is lacking. Objective: This study explored the use of Instagram in sharing miscarriage experiences, guided by the following research question: How is social community support given to women who share their miscarriage experiences on social media? Considering that social media is increasingly used as a source of social support, in this study, we chose Instagram as the social media platform. The purpose of this research was to create a better understanding of how social media provides support in expressing personal miscarriage experiences and how people engage with such posts. Methods: This study used a qualitative inductive research method in which a phenomenological strategy and thematic analysis were followed to create a comprehensive understanding of the social community support phenomenon. The dataset was established from a sample of 258 Instagram posts and 736 comments collected over a period of 6 months after initial posts and from 6 different women. These data were categorized and clustered through a thematic analysis. Results: Three themes were identified: (1) storytelling of emotional turmoil and grief after miscarriage, (2) sharing positivity amidst miscarriage grief, and (3) mentioning personal medical information about miscarriage. Theme 1 represents the emotional experience of women who have had a miscarriage. It encompasses the initial posts that included miscarriage storytelling that express deep grief and mental distress and the emotional impact on both the posters and the commenters. Theme 2 highlights the importance of finding moments of joy and positivity in the midst of mental distress and pain. The posts shared with the online community convey a sense of moving forward and a refusal to let grief become the defining aspect of one?s life. Theme 3 focuses on sharing medical and practical advice. This theme includes posts and comments about medications, in vitro fertilization procedures, hospital experiences, and personal physical symptoms. Conclusions: As an overarching theme for this social support phenomenon, we introduce the term communal load sharing to describe the therapeutic role of social media in helping women cope with miscarriage by providing a platform for sharing similar experiences, breaking social taboos, and fostering load sharing. UR - https://www.jmir.org/2024/1/e56680 UR - http://dx.doi.org/10.2196/56680 UR - http://www.ncbi.nlm.nih.gov/pubmed/39656509 ID - info:doi/10.2196/56680 ER - TY - JOUR AU - Klimiuk, Bartosz Krzysztof AU - Kot, Amelia AU - Majcherek, Ewa AU - Kubiak, B. Katarzyna AU - Balwicki, ?ukasz PY - 2024/12/9 TI - Themes in Abortion Forum Discussions in a Restrictive Access Context: Qualitative and Quantitative Analyses JO - J Med Internet Res SP - e59544 VL - 26 KW - abortion KW - content analysis KW - reproductive health KW - online forum KW - Poland KW - women KW - support N2 - Background: Abortion is one of the most common medical procedures worldwide. Despite this, access to abortion on demand remains restricted in many countries, including Poland. As a result, many women resort to undergoing the procedure without medical supervision, putting themselves at risk of serious health consequences such as drug poisoning, excessive bleeding, and hypovolemia. Unfortunately, some abortions also lead to severe infections. Objective: This study aims to qualitatively identify key themes in abortion forums to analyze the issues faced by individuals. The forums were then quantitatively analyzed to determine which problems were most prevalent. Methods: The most popular abortion forums were identified. A preliminary thematic analysis was conducted for the qualitative phase, followed by a manual quantitative analysis. Two independent researchers reviewed forum posts, categorizing them into specific themes. Results: An analysis of 13,397 responses from 370 threads across 4 forums revealed ?Abortion Process Progression? as the most discussed theme, highlighting a strong demand for information, emotional support, and medical guidance. The highest percentage of threads (162/886, 18.3%) focused on the need for mental support and the desire to have someone in contact during the abortion process. Concerns about the effectiveness of the termination also emerged as a significant topic, accounting for 83 of the 886 (9.4%) discussions. ?Emotional and Psychological Aspects? and ?Medical and Pharmacological Aspects? were also significant, highlighting the need for holistic care. Anxiety and fear related to the process were frequently discussed, accounting for 60 of the 886 (6.8%) responses. The issue of isolation and lack of support was also a common topic, appearing in 30 of the 886 (3.4%) threads. Notably, ?Social and Ethical Perception? accounted for only 13 of the 886 (1.5%) responses and appeared in just 13 threads. Conclusions: This study highlights the critical need for information and support for women navigating abortion, particularly in regions where access is restricted. It emphasizes the importance of addressing the multifaceted challenges women face and calls for policy changes and strengthened support networks to improve the health and rights of women, as well as all those seeking gynecological care in abortion contexts. Further research is encouraged to refine and expand support strategies. UR - https://www.jmir.org/2024/1/e59544 UR - http://dx.doi.org/10.2196/59544 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59544 ER - TY - JOUR AU - Bostock, CS Emmanuelle AU - Nevarez-Flores, G. Adriana AU - Neil, L. Amanda AU - Pontes, M. Halley AU - Kirkby, C. Kenneth PY - 2024/12/6 TI - Self-Induced Mania Methods and Motivations Reported in Online Forums: Observational Qualitative Study JO - J Particip Med SP - e56970 VL - 16 KW - bipolar disorder KW - mania KW - hypomania KW - self-induced KW - online forums KW - consumer reports N2 - Background: In bipolar disorder (BD), mania may be self-induced by manipulation of specific precipitants, as reported in case studies. Another potential source of information on the self-induction of mania is the online postings of users with lived experience of mania. Objective: The primary aim of this study is to examine the range of methods used to self-induce mania or hypomania described by users of online forums with self-reported BD. Second, we summarize the motivations of users to engage in these behaviors. Methods: We conducted an observational study of online forum posts that discussed self-induction of mania or hypomania, either in the posters themselves or observed firsthand in others. Posts were identified using Google advanced search operators, then extracted and coded for content in NVivo (version 12 for Mac; QSR International). A total of 44 online forum threads were identified discussing self-induced mania (n=25) or hypomania (n=19). These forums contained 585 posts by 405 usernames, of which 126 usernames discussed methods for self-induction across 327 posts (number of methods per username: median 2, IQR 1-4; range 1-11). Results: In total, 36 methods were grouped by the authors. The most frequently reported were sleep reduction (n=50), caffeine (n=37), and cessation of medication (n=27). Twenty-six usernames reported their motivation to self-induce mania or hypomania; almost three-quarters (n=19) reported a desire to end a depressive episode. Almost a third of usernames (118/405) explicitly discouraged other forum users from self-inducing mania or hypomania. Conclusions: Online forums provide an additional and valuable source of information about triggers for mania that may inform relapse prevention in BD. The online forum conversations investigated were generally responsible and included cautionary advice not to pursue these methods. UR - https://jopm.jmir.org/2024/1/e56970 UR - http://dx.doi.org/10.2196/56970 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/56970 ER - TY - JOUR AU - Orr, Noreen AU - Rogers, Morwenna AU - Stein, Abigail AU - Thompson Coon, Jo AU - Stein, Kenneth PY - 2024/12/6 TI - Reviewing the Evidence Base for Topical Steroid Withdrawal Syndrome in the Research Literature and Social Media Platforms: An Evidence Gap Map JO - J Med Internet Res SP - e57687 VL - 26 KW - topical steroid withdrawal syndrome KW - evidence gap map KW - social media KW - blogs KW - Instagram KW - Reddit KW - topical corticosteroids N2 - Background: Within the dermatological community, topical steroid withdrawal syndrome (TSWS) is a medically contested condition with a limited research base. Published studies on TSWS indicate that it is a distinct adverse effect of prolonged use of topical corticosteroids, but there is a paucity of high-quality research evidence. Among the ?patient community,? awareness has been increasing, with rapid growth in social media posts on TSWS and the introduction of online communities such as the International Topical Steroid Awareness Network. This evidence gap map (EGM) was developed in response to recent calls for research to better understand TSWS and aims to be an important resource to guide both researchers and clinicians in the prioritization of research topics for further research. Objective: This study aims to identify the range, extent, and type of evidence on TSWS in the research literature and social media platforms using an EGM. Methods: The MEDLINE and Embase (Ovid), CINAHL (EBSCOhost), and ProQuest Dissertations & Theses and Conference Proceedings Citation Index (CPCI-Science and CPCI-Social Science & Humanities via Web of Science) databases were searched. The final search was run in November 2023. Study titles, abstracts, and full texts were screened by 2 reviewers, and a third was consulted to resolve any differences. Blogging sites WordPress, Medium, and Blogspot and Google were searched; Instagram and Reddit were searched for the 100 most recent posts on specific dates in February 2023. Blog titles, Instagram posts, and Reddit posts were screened for relevance by 2 reviewers. A data extraction tool was developed on EPPI-Reviewer, and data extraction was undertaken by one reviewer and checked by a second; any inconsistencies were resolved through discussion. We did not undertake quality appraisal of the included studies. EPPI-Reviewer and EPPI-Mapper were used to generate the interactive EGM. Results: Overall, 81 academic publications and 223 social media posts were included in the EGM. The research evidence mainly addressed the physical symptoms of TSWS (skin), treatments, and, to a lesser extent, risk factors and disease mechanisms. The social media evidence primarily focused on the physical symptoms (skin and nonskin), mental health symptoms, relationships, activities of everyday living, beliefs and attitudes, and treatments. Conclusions: The EGM shows that research evidence is growing on TSWS but remains lacking in several important areas: longer-term prospective observational studies to assess the safety of prolonged use of topical corticosteroids and to prevent addiction; qualitative research to understand the lived experience of TSWS; and longitudinal research on the patient?s ?TSWS journey? to healing. The inclusion of social media evidence is a methodological innovation in EGMs, recognizing the increased presence of #topicalsteroidwithdrawal on social media and how it can be used to better understand the patient perspective and ultimately, provide better care for people with TSWS. UR - https://www.jmir.org/2024/1/e57687 UR - http://dx.doi.org/10.2196/57687 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57687 ER - TY - JOUR AU - Na, Kilhoe AU - Zimdars, Melissa AU - Cullinan, E. Megan PY - 2024/12/5 TI - Understanding Membership in Alternative Health Social Media Groups and Its Association with COVID-19 and Influenza Vaccination: Web-Based Cross-Sectional Survey JO - JMIR Form Res SP - e54092 VL - 8 KW - alternative health KW - social media KW - misinformation KW - vaccination KW - COVID-19 KW - Coronavirus N2 - Background: Social media platforms have become home to numerous alternative health groups where people share health information and scientifically unproven treatments. Individuals share not only health information but also health misinformation in alternative health groups on social media. Yet, little research has been carried out to understand members of these groups. This study aims to better understand various characteristics of members in alternative health groups and the association between membership and attitudes toward vaccination and COVID-19 and influenza vaccination?related behaviors. Objective: This study aims to test hypotheses about different potential characteristics of members in alternative health groups and the association between membership and attitudes toward vaccination and vaccine-related behaviors. Methods: A web-based cross-sectional survey (N=1050) was conducted. Participants were recruited from 19 alternative health social media groups and Amazon?s Mechanical Turk. A total of 596 participants were members of alternative health groups and 454 were nonmembers of alternative health groups. Logistic regressions were performed to test the hypotheses about the relationship between membership and the variables of interest. Results: Logistic regression revealed that there is a positive association between alternative health social media group membership and 3 personal characteristics: sharing trait (B=.83, SE=.11; P<.01; odds ratio [OR] 2.30, 95% CI 1.85-2.86), fear of negative evaluations (B=.19, SE=.06; P<.001, OR 1.21, 95% CI 1.06-1.37), and conspiratorial mentality (B=.33, SE=.08; P<.01; OR 1.40, 95% CI 1.18-1.65). Also, the results indicate that there is a negative association between membership and 2 characteristics: health literacy (B=?1.09, SE=.17; P<.001; OR .33, 95% CI 0.23-0.47) and attitudes toward vaccination (B=? 2.33, SE=.09; P=.02; OR 0.79, 95% CI 0.65-0.95). However, there is no association between membership and health consciousness (B=.12, SE=.10; P=.24; OR 1.13, 95% CI 0.92-1.38). Finally, membership is negatively associated with COVID-19 vaccination status (B=?.84, SE=.17; P<.001; OR 48, 95% CI 0.32-0.62), and influenza vaccination practice (B=?1.14, SE=.17; P<.001; OR .31, 95% CI 0.22-0.45). Conclusions: Our findings indicate that people joining alternative health social media groups differ from nonmembers in different aspects, such as sharing, fear of negative evaluations, conspiratorial mentality, and health literacy. They also suggest that there is a significant relationship between membership and vaccination. By more thoroughly exploring the demographic, or by better understanding the people for whom interventions are designed, this study is expected to help researchers to more strategically and effectively develop and implement interventions. UR - https://formative.jmir.org/2024/1/e54092 UR - http://dx.doi.org/10.2196/54092 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/54092 ER - TY - JOUR AU - Ni, Congning AU - Song, Qingyuan AU - Chen, Qingxia AU - Song, Lijun AU - Commiskey, Patricia AU - Stratton, Lauren AU - Malin, Bradley AU - Yin, Zhijun PY - 2024/12/4 TI - Sentiment Dynamics Among Informal Caregivers in Web-Based Alzheimer Communities: Systematic Analysis of Emotional Support and Interaction Patterns JO - JMIR Aging SP - e60050 VL - 7 KW - informal caregivers KW - Alzheimer disease KW - dementias KW - web-based community KW - sentiment analysis KW - topic modeling KW - caregiving KW - carers KW - family care KW - support group KW - peer support KW - gerontology KW - geriatrics KW - aging KW - attitudes KW - opinion KW - perceptions KW - perspectives KW - sentiment KW - cognitive KW - web-based communities KW - Linguistic Inquiry and Word Count KW - machine learning KW - Valence Aware Dictionary for Sentiment Reasoning N2 - Background: Alzheimer disease and related dementias (ADRD) are a growing global health challenge. ADRD place significant physical, emotional, and financial burdens on informal caregivers and negatively affects their well-being. Web-based social media platforms have emerged as valuable sources of peer support for these caregivers. However, there has been limited investigation into how web-based peer support might influence their mental well-being. Objective: This study aims to examine the dynamics of sentiment scores, a major indicator of mental well-being, among informal ADRD caregivers, specifically how their sentiment changes as they participate in caregiving experience discussions within 2 ADRD web-based communities. Methods: We collected data from 2 large web-based ADRD caregiving communities, ALZConnected (from November 2011 to August 2022) and TalkingPoint (from March 2003 to November 2022). Using the Valence Aware Dictionary for Sentiment Reasoning and Linguistic Inquiry and Word Count, we calculated sentiment scores for each post and evaluated how the initial sentiment score of a topic initiator evolves within a discussion thread. Structured topic modeling and regression analysis were used to identify the primary topics consistently associated with sentiment changes within these threads. We investigated longitudinal sentiment trends to identify patterns of sentimental stability or enhancement due to prolonged engagement in web-based communities by plotting linear interpolation lines of the sentiment values of each individual user. Results: The ALZConnected dataset comprised 532,992 posts, consisting of 57,641 topic threads and 475,351 comments. The TalkingPoint dataset was composed of 846,344 posts, consisting of 81,068 topic threads and 765,276 comments. Our research revealed that topic initiators experienced a notable increase in sentiment as they engaged in subsequent discussions within their threads, with a significant uptick in positivity in the short term. This phenomenon is part of a broader trend of steadily rising positive sentiment among ADRD caregivers. Using structured topic modeling, we cataloged a diverse range of topics that included both emotional aspects, such as family emotions, and practical concerns, such as diagnosis and treatment and everyday care practices. We observed that sentiment scores were positively aligned with discussions about family and daily routines life (coefficient=3.53; P<.001), while topics related to illness (coefficient=?1.37; P<.001) and caregiving facilities (coefficient=?1.98; P<.001) tended to correlate with lower sentiment scores. This evidence highlights the significant impact that both the time of participation and the posting content have on the sentiment changes of caregivers. Conclusions: This study identifies sentiment changes among informal ADRD caregivers through their interactions in 2 extensive web-based communities. These findings emphasize the importance of early emotional support within a topic thread and demonstrate a predominantly positive sentiment in these communities over time. These further highlight the value of web-based peer support and its potential to enhance the emotional well-being of informal ADRD caregivers. UR - https://aging.jmir.org/2024/1/e60050 UR - http://dx.doi.org/10.2196/60050 UR - http://www.ncbi.nlm.nih.gov/pubmed/39630495 ID - info:doi/10.2196/60050 ER - TY - JOUR AU - Yip, Yee Yan AU - Makmor-Bakry, Mohd AU - Chong, Wen Wei PY - 2024/11/22 TI - Elements Influencing User Engagement in Social Media Posts on Lifestyle Risk Factors: Systematic Review JO - J Med Internet Res SP - e59742 VL - 26 KW - chronic disease KW - health promotion KW - internet KW - primary prevention KW - social media KW - systematic reviews KW - health care professional KW - health personnel KW - user engagement KW - lifestyle KW - risk N2 - Background: The high prevalence of noncommunicable diseases and the growing importance of social media have prompted health care professionals (HCPs) to use social media to deliver health information aimed at reducing lifestyle risk factors. Previous studies have acknowledged that the identification of elements that influence user engagement metrics could help HCPs in creating engaging posts toward effective health promotion on social media. Nevertheless, few studies have attempted to comprehensively identify a list of elements in social media posts that could influence user engagement metrics. Objective: This systematic review aimed to identify elements influencing user engagement metrics in social media posts by HCPs aimed to reduce lifestyle risk factors. Methods: Relevant studies in English, published between January 2006 and June 2023 were identified from MEDLINE or OVID, Scopus, Web of Science, and CINAHL databases. Included studies were those that examined social media posts by HCPs aimed at reducing the 4 key lifestyle risk factors. Additionally, the studies also outlined elements in social media posts that influenced user engagement metrics. The titles, abstracts, and full papers were screened and reviewed for eligibility. Following data extraction, narrative synthesis was performed. All investigated elements in the included studies were categorized. The elements in social media posts that influenced user engagement metrics were identified. Results: A total of 19 studies were included in this review. Investigated elements were grouped into 9 categories, with 35 elements found to influence user engagement. The 3 predominant categories of elements influencing user engagement were communication using supportive or emotive elements, communication aimed toward behavioral changes, and the appearance of posts. In contrast, the source of post content, social media platform, and timing of post had less than 3 studies with elements influencing user engagement. Conclusions: Findings demonstrated that supportive or emotive communication toward behavioral changes and post appearance could increase postlevel interactions, indicating a favorable response from the users toward posts made by HCPs. As social media continues to evolve, these elements should be constantly evaluated through further research. UR - https://www.jmir.org/2024/1/e59742 UR - http://dx.doi.org/10.2196/59742 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59742 ER - TY - JOUR AU - Lee, Chung-Chun AU - Lee, Seunghee AU - Song, Mi-Hwa AU - Kim, Jong-Yeup AU - Lee, Suehyun PY - 2024/11/20 TI - Bidirectional Long Short-Term Memory?Based Detection of Adverse Drug Reaction Posts Using Korean Social Networking Services Data: Deep Learning Approaches JO - JMIR Med Inform SP - e45289 VL - 12 KW - adverse drug reaction KW - social network service KW - classification model KW - Korean text data KW - social networking service KW - drug detection KW - deep learning KW - Korea KW - social data KW - older KW - older adults KW - drug surveillance KW - medicine N2 - Background: Social networking services (SNS) closely reflect the lives of individuals in modern society and generate large amounts of data. Previous studies have extracted drug information using relevant SNS data. In particular, it is important to detect adverse drug reactions (ADRs) early using drug surveillance systems. To this end, various deep learning methods have been used to analyze data in multiple languages in addition to English. Objective: A cautionary drug that can cause ADRs in older patients was selected, and Korean SNS data containing this drug information were collected. Based on this information, we aimed to develop a deep learning model that classifies drug ADR posts based on a recurrent neural network. Methods: In previous studies, ketoprofen, which has a high prescription frequency and, thus, was referred to the most in posts secured from SNS data, was selected as the target drug. Blog posts, café posts, and NAVER Q&A posts from 2005 to 2020 were collected from NAVER, a portal site containing drug-related information, and natural language processing techniques were applied to analyze data written in Korean. Posts containing highly relevant drug names and ADR word pairs were filtered through association analysis, and training data were generated through manual labeling tasks. Using the training data, an embedded layer of word2vec was formed, and a Bidirectional Long Short-Term Memory (Bi-LSTM) classification model was generated. Then, we evaluated the area under the curve with other machine learning models. In addition, the entire process was further verified using the nonsteroidal anti-inflammatory drug aceclofenac. Results: Among the nonsteroidal anti-inflammatory drugs, Korean SNS posts containing information on ketoprofen and aceclofenac were secured, and the generic name lexicon, ADR lexicon, and Korean stop word lexicon were generated. In addition, to improve the accuracy of the classification model, an embedding layer was created considering the association between the drug name and the ADR word. In the ADR post classification test, ketoprofen and aceclofenac achieved 85% and 80% accuracy, respectively. Conclusions: Here, we propose a process for developing a model for classifying ADR posts using SNS data. After analyzing drug name-ADR patterns, we filtered high-quality data by extracting posts, including known ADR words based on the analysis. Based on these data, we developed a model that classifies ADR posts. This confirmed that a model that can leverage social data to monitor ADRs automatically is feasible. UR - https://medinform.jmir.org/2024/1/e45289 UR - http://dx.doi.org/10.2196/45289 ID - info:doi/10.2196/45289 ER - TY - JOUR AU - Hamarash, Qadir Mariwan AU - Ibrahim, Radhwan AU - Yaas, Hussein Marghoob AU - Abdulghani, Faris Mohammed AU - Al Mushhadany, Osama PY - 2024/11/19 TI - Comparative Effectiveness of Health Communication Strategies in Nursing: A Mixed Methods Study of Internet, mHealth, and Social Media Versus Traditional Methods JO - JMIR Nursing SP - e55744 VL - 7 KW - nursing education KW - nursing KW - nursing students KW - communication modalities KW - internet-based resources KW - nursing curriculum KW - mHealth clinical learning KW - mHealth KW - mobile health KW - social media N2 - Background: Effective communication is vital in health care, especially for nursing students who are the future of health care delivery. In Iraq?s nursing education landscape, characterized by challenges such as resource constraints and infrastructural limitations, understanding communication modalities is crucial. Objective: This mixed methods study conducted in 2 nursing colleges aims to explore and compare the effectiveness of health communication on the web, through mobile health (mHealth) applications, and via social media among nursing students in Iraq. The research addresses a gap in understanding communication modalities specific to Iraq and explores the perspectives, experiences, and challenges faced by nursing students. Methods: Qualitative interviews were conducted with a purposive sample (n=30), and a structured survey was distributed to a larger sample (n=300) representing diverse educational programs. The study used a nuanced approach to gather insights into the preferences and usage patterns of nursing students regarding communication modalities. The study was conducted between January 12, 2023, and May 5, 2023. Results: Qualitative findings highlighted nursing students? reliance on the web for educational materials, the significant role of mHealth applications in clinical skill development, and the emergence of social media platforms as community-building tools. Quantitative results revealed high-frequency web use (276/300, 92%) for educational purposes, regular mHealth application usage (204/300, 68%) in clinical settings, and active engagement on social media platforms (240/300, 80%). Traditional methods such as face-to-face interactions (216/300, 72%) and practical experiences (255/300, 85%) were preferred for developing essential skills. Conclusions: The study underscores nursing students? preference for an integrated approach, recognizing the complementary strengths of traditional and digital methods. Challenges include concerns about information accuracy and ethical considerations in digital spaces. The findings emphasize the need for curriculum adjustments that seamlessly integrate diverse communication modalities to create a dynamic learning environment. Educators play a crucial role in shaping this integration, emphasizing the enduring value of face-to-face interactions and practical experiences while harnessing the benefits of digital resources. Clear guidelines on professional behavior online are essential. Overall, the study expands the understanding of communication modalities among nursing students in Iraq and provides valuable insights for health care education stakeholders globally. UR - https://nursing.jmir.org/2024/1/e55744 UR - http://dx.doi.org/10.2196/55744 ID - info:doi/10.2196/55744 ER - TY - JOUR AU - Chen, Runnan AU - Fu, Xiaorong AU - Liu, Mochi AU - Liao, Ke AU - Bai, Lifei PY - 2024/11/19 TI - Online Depression Communities as a Complementary Approach to Improving the Attitudes of Patients With Depression Toward Medication Adherence: Cross-Sectional Survey Study JO - J Med Internet Res SP - e56166 VL - 26 KW - online depression communities KW - attitudes KW - institution-generated content KW - user-generated content KW - perceived social support KW - antidepressants KW - hopelessness KW - cross-sectional study KW - China KW - health care system KW - online health community KW - depression KW - medication adherence KW - social support KW - health care practitioner KW - peer support N2 - Background: Lack of adherence to prescribed medication is common among patients with depression in China, posing serious challenges to the health care system. Online health communities have been found to be effective in enhancing patient compliance. However, empirical evidence supporting this effect in the context of depression treatment is absent, and the influence of online health community content on patients? attitudes toward medication adherence is also underexplored. Objective: This study aims to explore whether online depression communities (ODCs) can help ameliorate the problem of poor medication taking among patients with depression. Drawing on the stimulus-organism-response and feelings-as-information theories, we established a research model to examine the influence of useful institution-generated content (IGC) and positive user-generated content (UGC) on attitudes toward medication adherence when combined with the mediating role of perceived social support, perceived value of antidepressants, and the moderating role of hopelessness. Methods: A cross-sectional questionnaire survey method was used in this research. Participants were recruited from various Chinese ODCs, generating data for a main study and 2 robustness checks. Hierarchical multiple regression analyses and bootstrapping analyses were adopted as the primary methods to test the hypotheses. Results: We received 1515 valid responses in total, contributing to 5 different datasets: model IGC (n=353, 23.3%), model UGC (n=358, 23.63%), model IGC+UGC (n=270, 17.82%), model IGC-B (n=266, 17.56%), and model UGC-B (n=268, 17.69%). Models IGC and UGC were used for the main study. Model IGC+UGC was used for robustness check A. Models IGC-B and UGC-B were used for robustness check B. Useful IGC and positive UGC were proven to have positive impact on the attitudes of patients with depression toward medication adherence through the mediations of perceived social support and perceived value of antidepressants. The findings corroborated the role of hopelessness in weakening or even negating the positive effects of ODC content on the attitudes of patients with depression toward medication adherence. Conclusions: This study provides the first empirical evidence demonstrating the relationship between ODC content and attitudes toward medication adherence, through which we offer a novel solution to the problem of poor medication adherence among patients with depression in China. Our findings also provide suggestions about how to optimize this new approach?health care practitioners should generate online content that precisely matches the informational needs of patients with depression, and ODC service providers should endeavor to regulate the community atmosphere. Nonetheless, we warn that ODC interventions cannot be used as the only approach to addressing the problem of poor medication taking among patients with severe depressive symptoms. UR - https://www.jmir.org/2024/1/e56166 UR - http://dx.doi.org/10.2196/56166 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/56166 ER - TY - JOUR AU - McAlister, L. Kelsey AU - Beatty, C. Clare AU - Smith-Caswell, E. Jacqueline AU - Yourell, L. Jacqlyn AU - Huberty, L. Jennifer PY - 2024/11/4 TI - Social Media Use in Adolescents: Bans, Benefits, and Emotion Regulation Behaviors JO - JMIR Ment Health SP - e64626 VL - 11 KW - adolescent social media KW - social media bans KW - emotion regulation KW - youth KW - adolescent KW - media use KW - social platform KW - social network KW - self-regulation KW - behavioral health KW - mental health KW - digital health KW - technology KW - digital literacy UR - https://mental.jmir.org/2024/1/e64626 UR - http://dx.doi.org/10.2196/64626 ID - info:doi/10.2196/64626 ER - TY - JOUR AU - Albert, L. Stephanie AU - Massar, E. Rachel AU - Cassidy, Omni AU - Fennelly, Kayla AU - Jay, Melanie AU - Massey, M. Philip AU - Bragg, A. Marie PY - 2024/11/4 TI - Body Positivity, Physical Health, and Emotional Well-Being Discourse on Social Media: Content Analysis of Lizzo?s Instagram JO - JMIR Form Res SP - e60541 VL - 8 KW - weight stigma KW - body positivity KW - health at every size KW - emotional well-being KW - social media KW - qualitative content analysis KW - well-being KW - influencers KW - mental health outcomes KW - psychological health KW - body shaming KW - bullying N2 - Background: Weight stigma is a fundamental cause of health inequality. Body positivity may be a counterbalance to weight stigma. Social media is replete with weight-stigmatizing content and is a driver of poor mental health outcomes; however, there remains a gap in understanding its potential to mitigate the prevalence and impact of harmful messaging and to promote positive effects on a large scale. Objective: We selected musical artist Lizzo, whose brand emphasizes body positivity and empowerment, for an instrumental case study on the discourse on social media and specifically Instagram. We focused on 3 domains, including body positivity, physical health, and emotional well-being. These domains challenge social norms around weight and body size and have the potential to positively affect the physical and psychological health of people with diverse body sizes. Methods: We evaluated posts by Lizzo, comments from Instagram users, and replies to comments over a 2-month period (October 11 to December 12, 2019). Two coders rated Lizzo?s posts and Instagram users? comments for their sentiments on the 3 domains. Replies to Instagram users? comments were assessed for their reactions to comments (ie, did they oppose or argue against the comment or did they support or bolster the comment). Engagement metrics, including the number of ?likes,? were also collected. Results: The final sample included 50 original posts by Lizzo, 250 comments from Instagram users, and 1099 replies to comments. A proportion of Lizzo?s content included body positive sentiments (34%) and emotional well-being (18%); no posts dealt explicitly with physical health. A substantial amount Instagram users? comments and replies contained stigmatizing content including the use of nauseated and vomiting emojis, implications that Lizzo?s body was shameful and should be hidden away, accusations that she was promoting obesity, and impeachments of Lizzo?s health. In spite of the stigmatizing content, we also discovered content highlighting the beneficial nature of having positive representation of a Black woman living in a larger body who is thriving. Moreover, analysis of the discourse between users illustrated that stigmatizing expressions are being combated online, at least to some degree. Conclusions: This study demonstrates that Lizzo has exposed millions of social media users to messages about body positivity and provided more visibility for conversations about weight and shape. Future research should examine the extent to which body positive messages can lead to greater acceptance of individuals living in larger bodies. Instagram and other social media platforms should consider ways to reduce body-shaming content while finding ways to promote content that features diverse bodies. Shifting the landscape of social media could decrease stereotypes about weight and shape while increasing dialog about the need for greater acceptance and inclusion of people with diverse bodies. UR - https://formative.jmir.org/2024/1/e60541 UR - http://dx.doi.org/10.2196/60541 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/60541 ER - TY - JOUR AU - Haight, Macy AU - Jacobs, R. Hayden AU - Boltey, K. Sarah AU - Murray, A. Kelly AU - Hartwell, Micah PY - 2024/10/31 TI - US Public Interest in Merkel Cell Carcinoma Following Jimmy Buffett?s Death and Implications for Continued Health Advocacy: Infodemiology Study of Google Trends JO - JMIR Dermatol SP - e60282 VL - 7 KW - skin cancer KW - merkel cell carcinoma KW - infodemiology KW - cancer KW - carcinoma KW - cell carcinoma KW - sunlight KW - infodemiology study KW - Google Trends KW - temporal analysis KW - United States KW - USA KW - sun UR - https://derma.jmir.org/2024/1/e60282 UR - http://dx.doi.org/10.2196/60282 ID - info:doi/10.2196/60282 ER - TY - JOUR AU - Lee, Eun AU - Kim, Heejun AU - Esener, Yildiz AU - McCall, Terika PY - 2024/10/28 TI - Internet-Based Social Connections of Black American College Students in Pre?COVID-19 and Peri?COVID-19 Pandemic Periods: Network Analysis JO - J Med Internet Res SP - e55531 VL - 26 KW - COVID-19 pandemic KW - college students KW - Black American KW - African American KW - social network analysis KW - social media KW - mental health KW - depression N2 - Background: A global-scale pandemic, such as the COVID-19 pandemic, greatly impacted communities of color. Moreover, physical distancing recommendations during the height of the COVID-19 pandemic negatively affected people?s sense of social connection, especially among young individuals. More research is needed on the use of social media and communication about depression, with a specific focus on young Black Americans. Objective: This paper aims to examine whether there are any differences in social-networking characteristics before and during the pandemic periods (ie, pre?COVID-19 pandemic vs peri?COVID-19 pandemic) among the students of historically black colleges and universities (HBCUs). For the study, the researchers focus on the students who have posted a depression-related tweet or have retweeted such posts on their timeline and also those who have not made such tweets. This is done to understand the collective patterns of both groups. Methods: This paper analyzed the social networks on Twitter (currently known as X; X Corp) of HBCU students through comparing pre?COVID-19 and peri?COVID-19 pandemic data. The researchers quantified the structural properties, such as reciprocity, homophily, and communities, to test the differences in internet-based socializing patterns between the depression-related and non?depression related groups for the 2 periods. Results: During the COVID-19 pandemic period, the group with depression-related tweets saw an increase in internet-based friendships, with the average number of friends rising from 1194 (SD 528.14) to 1371 (SD 824.61; P<.001). Their mutual relationships strengthened (reciprocity: 0.78-0.8; P=.01), and they showed higher assortativity with other depression-related group members (0.6-0.7; P<.001). In a network with only HBCU students, internet-based and physical affiliation memberships aligned closely during the peri?COVID-19 pandemic period, with membership entropy decreasing from 1.0 to 0.5. While users without depression-related tweets engaged more on the internet with other users who shared physical affiliations, those who posted depression-related tweets maintained consistent entropy levels (modularity: 0.75-0.76). Compared with randomized networks before and during the COVID-19 pandemic (P<.001), the users also exhibited high homophily with other members who posted depression-related tweets. Conclusions: The findings of this study provided insight into the social media activities of HBCU students? social networks and communication about depression on social media. Future social media interventions focused on the mental health of Black college students may focus on providing resources to students who communicate about depression. Efforts aimed at providing relevant resources and information to internet-based communities that share institutional affiliation may enhance access to social support, particularly for those who may not proactively seek assistance. This approach may contribute to increased social support for individuals within these communities, especially those with a limited social capacity. UR - https://www.jmir.org/2024/1/e55531 UR - http://dx.doi.org/10.2196/55531 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/55531 ER - TY - JOUR AU - Kierstead, Elexis AU - Silver, Nathan AU - Amato, Michael PY - 2024/10/25 TI - Examining Quitting Experiences on Quit Vaping Subreddits From 2015 to 2021: Content Analysis JO - J Med Internet Res SP - e52129 VL - 26 KW - quitting vaping, social media, tobacco policy KW - cessation KW - e-cigarette KW - electronic cigarette KW - smoking KW - vaping KW - cessation programs KW - social support KW - peer support N2 - Background: Despite the prevalence of vaping nicotine, most nicotine cessation research remains focused on smoking cigarettes. However, the lived experience of quitting smoking is different from quitting vaping. As a result, research examining the unique experiences of those quitting vaping can better inform quitting resources and cessation programs specific to e-cigarette use. Examining Reddit forums (ie, subreddits) dedicated to the topics of quitting vaping nicotine can provide insight into the discussion around experiences on quitting vaping. Prior literature examining limited discussions around quitting vaping on Reddit has identified the sharing of barriers and facilitators for quitting, but more research is needed to investigate the content comprehensively across all subreddits. Objective: The objective of this study is to examine content across quit vaping subreddits since their inception to better understand quitting vaping within the context of the expanding nicotine market. Methods: All posts from January 2015 to October 2021 were scraped from all quit vaping subreddits: r/QuittingJuul, r/QuitVaping, r/quit_vaping, and r/stopvaping (N=7110). Rolling weekly average post volume was calculated. A codebook informed by a latent Dirichlet allocation topic model was developed to characterize themes in a subsample of 695 randomly selected posts. Frequencies and percentages of posts containing each coded theme were assessed along with the number of upvotes and comments. Results: Post volume increased across all subreddits over time, spiking from August ? September of 2019 when vaping lung injury emerged. Just over 52% of posts discussed seeking social support and 16.83% discussed providing social support. Posts providing support received the most positive engagements (i.e. upvotes) of all coded categories. Posts also discussed physical and psychological symptoms of withdrawal (30.65% and 18.85%, respectively), strategies for quitting including: quitting cold turkey (38.33%), using alternative nicotine products (17%), and tapering down nicotine content (10.50%). Most posts shared a personal narrative (92.37%) and some discussed quit motivation (28.20%) and relapse (14.99%). Conclusions: This work identifies a desire for peer-to-peer support for quitting vaping, which reinforces existing literature and highlights characteristics of quitting vaping specific to a changing nicotine product environment. Given that posts providing social support were the most upvoted, this suggests that subreddit contributors are seeking support from their peers when discussing quitting vaping. Additionally, this analysis shows the sharing of barriers and facilitators for quitting, supporting findings from prior exploration of quit vaping subreddits. Finally, quitting vaping in an ever-growing nicotine market has led to the evolution of vaping-specific quit methods such as tapering down nicotine content. These findings have direct implications for quit vaping product implementation and development. UR - https://www.jmir.org/2024/1/e52129 UR - http://dx.doi.org/10.2196/52129 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/52129 ER - TY - JOUR AU - Mertens, Ellen AU - Ye, Guoquan AU - Beuckels, Emma AU - Hudders, Liselot PY - 2024/10/23 TI - Parenting Information on Social Media: Systematic Literature Review JO - JMIR Pediatr Parent SP - e55372 VL - 7 KW - parenting KW - social media KW - parenting information KW - systematic literature review KW - bibliometric literature review KW - thematic analysis N2 - Background: Social media has become extremely popular among parents to seek parenting information. Despite the increasing academic attention to the topic, studies are scattered across various disciplines. Therefore, this study broadens the scope of the existing reviews by transcending narrow academic subdomains and including all relevant research insights related to parents? information seeking on social media and its consequent effects. Objective: The aims of this systematic literature review were to (1) identify influential journals and scholars in the field; (2) examine the thematic evolution of research on parenting and social media; and (3) pinpoint research gaps, providing recommendations for future exploration. Methods: On the basis of a criteria for identifying scholarly publications, we selected 338 studies for this systematic literature review. We adopted a bibliometric analysis combined with a content thematic analysis to obtain data-driven insights with a profound understanding of the predominant themes in the realm of parenting and social media. Results: The analysis revealed a significant increase in research on parenting and social media since 2015, especially in the medical domain. The studies in our review spanned 232 different research fields, and the most prolific journal was JMIR Pediatrics and Parenting. The thematic analysis identified 4 emerging research themes in the studies: parenting motivations to seek information, nature of parenting content on social media, impact of parenting content, and interventions for parents on social media. Conclusions: This study provides critical insights into the current research landscape of parenting and social media. The identified themes, research gaps, and future research recommendations provide a foundation for future studies, guiding researchers toward valuable areas for exploration. UR - https://pediatrics.jmir.org/2024/1/e55372 UR - http://dx.doi.org/10.2196/55372 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/55372 ER - TY - JOUR AU - Clavier, Thomas AU - Chevalier, Emma AU - Demailly, Zoé AU - Veber, Benoit AU - Messaadi, Imad-Abdelkader AU - Popoff, Benjamin PY - 2024/10/22 TI - Social Media Usage for Medical Education and Smartphone Addiction Among Medical Students: National Web-Based Survey JO - JMIR Med Educ SP - e55149 VL - 10 KW - medical student KW - social network KW - social media KW - smartphone addiction KW - medical education KW - mobile addiction KW - social networks N2 - Background: Social media (SoMe) have taken a major place in the medical field, and younger generations are increasingly using them as their primary source to find information. Objective: This study aimed to describe the use of SoMe for medical education among French medical students and assess the prevalence of smartphone addiction in this population. Methods: A cross-sectional web-based survey was conducted among French medical students (second to sixth year of study). The questionnaire collected information on SoMe use for medical education and professional behavior. Smartphone addiction was assessed using the Smartphone Addiction Scale Short-Version (SAS-SV) score. Results: A total of 762 medical students responded to the survey. Of these, 762 (100%) were SoMe users, spending a median of 120 (IQR 60?150) minutes per day on SoMe; 656 (86.1%) used SoMe for medical education, with YouTube, Instagram, and Facebook being the most popular platforms. The misuse of SoMe in a professional context was also identified; 27.2% (207/762) of students posted hospital internship content, and 10.8% (82/762) searched for a patient?s name on SoMe. Smartphone addiction was prevalent among 29.1% (222/762) of respondents, with a significant correlation between increased SoMe use and SAS-SV score (r=0.39, 95% CI 0.33?0.45; P<.001). Smartphone-addicted students reported a higher impact on study time (211/222, 95% vs 344/540, 63.6%; P<.001) and a greater tendency to share hospital internship content on social networks (78/222, 35.1% vs 129/540, 23.8%; P=.002). Conclusions: Our findings reveal the extensive use of SoMe for medical education among French medical students, alongside a notable prevalence of smartphone addiction. These results highlight the need for medical schools and educators to address the responsible use of SoMe and develop strategies to mitigate the risks associated with excessive use and addiction. UR - https://mededu.jmir.org/2024/1/e55149 UR - http://dx.doi.org/10.2196/55149 ID - info:doi/10.2196/55149 ER - TY - JOUR AU - Dhakal, Smita AU - Merani, Shermeen AU - Ahluwalia, Vandana AU - Battistella, Marisa AU - Borkhoff, M. Cornelia AU - Hazlewood, Stewart Glen AU - Lofters, Aisha AU - Marshall, A. Deborah AU - MacKay, Crystal AU - Gagliardi, R. Anna PY - 2024/10/18 TI - The Quality and Cultural Safety of Online Osteoarthritis Information for Affected Persons and Health Care Professionals: Content Analysis JO - J Med Internet Res SP - e57698 VL - 26 KW - osteoarthritis KW - women?s health KW - equity KW - educational materials KW - internet KW - content analysis KW - Canada KW - persons living with osteoarthritis KW - healthcare professionals KW - OA care KW - ethno-culturally women KW - immigrant women KW - diverse women KW - online materials KW - health information KW - prevention KW - management KW - misinformation KW - cultural safety N2 - Background: Osteoarthritis is more prevalent and severe among women than among men, but women are less likely to access early diagnosis and first-line management, particularly racialized immigrant women. Previous research advocated for greater access to culturally safe osteoarthritis information for both diverse women and health care professionals. The internet can reduce disparities by facilitating access to health information, but online materials can vary in quality. Objective: This study aimed to assess the quality and cultural safety of online osteoarthritis materials for persons affected by osteoarthritis and health care professionals. Methods: Content analysis was used to describe publicly available materials on osteoarthritis first-line management developed by Canadian organizations for affected persons or health care professionals. Searching, screening, and data extraction were performed in triplicate. We identified materials by searching Google, MEDLINE, and references of osteoarthritis-relevant guidelines and policies, and consulting our research team and collaborators. We assessed quality using DISCERN (University of Oxford) and a compiled framework for affected persons and health care professionals. We compiled frameworks to assess cultural safety. We derived an overall score, categorized as low (<50%), moderate (50%-69%), or high (?70%+) for criteria met. Results: After screening 176 items and eliminating 129, we included 47 osteoarthritis materials published between 2013 and 2023. Of those, 43 were for persons with osteoarthritis, most were developed by charities (n=31, 72.1%), based on expert advice (n=16, 55.2%), and in the format of booklets (n=15, 34.9%) or text on web pages (n=10, 23.3%). Of those, 23.3% (10/43) low, 46.5% (20/43) moderate, and 30.2% (13/43) high scored quality; and 25.6% (11/43), 48.8% (21/43), and 25.6% (11/43) were rated low, moderate, and high cultural safety, respectively. Of the 47 included osteoarthritis materials, 4 were for health care professionals. They were developed by a consortium (2/4, 50%), a charity (1/4, 25%), and a professional society (1/4, 25%), and largely based on expert advice (3/4, 75%). The format included infographics (3/4, 75%) and text on web pages (1/4, 25%). Of those, 25% (1/4), 25% (1/4), and 50% (2/4) were rated low, moderate, and high quality, respectively; and all were rated low for cultural safety. Quality and cultural safety did not appear to be associated with the characteristics of osteoarthritis materials (eg, type of developer, development method, and format). Conclusions: Overall, included osteoarthritis materials for persons with osteoarthritis and health care professionals were of low to moderate quality and cultural safety. These findings reveal the need for further efforts to improve existing or develop new osteoarthritis materials for both affected persons, including ethnoculturally diverse immigrant women, and health care professionals. Further research is needed to assess the quality and cultural safety of osteoarthritis materials developed by organizations outside of Canada and to establish a framework or instrument to assess cultural safety in the osteoarthritis context. UR - https://www.jmir.org/2024/1/e57698 UR - http://dx.doi.org/10.2196/57698 UR - http://www.ncbi.nlm.nih.gov/pubmed/39422989 ID - info:doi/10.2196/57698 ER - TY - JOUR AU - Dougherty, Madeline AU - Tompkins, Tamara AU - Zibrowski, Elaine AU - Cram, Jesse AU - Ashe, C. Maureen AU - Bhaskar, Le-Tien AU - Card, George Kiffer AU - Godfrey, Christina AU - Hebert, Paul AU - Lacombe, Ron AU - Muhl, Caitlin AU - Mulligan, Kate AU - Mulvale, Gillian AU - Nelson, A. Michelle L. AU - Norman, Myrna AU - Symes, Bobbi AU - Teare, Gary AU - Welch, Vivian AU - Kothari, Anita PY - 2024/10/17 TI - Coproduction in Social Prescribing Initiatives: Protocol for a Scoping Review JO - JMIR Res Protoc SP - e57062 VL - 13 KW - social prescribing KW - coproduction KW - codevelopment KW - policy KW - social prescription KW - nonmedical need KW - social need KW - clinical setting KW - community programs KW - health care system KW - pilot-tested KW - user involvement KW - health education N2 - Background: Social prescribing (SP) takes a holistic approach to health by linking clients from clinical settings to community programs to address their nonmedical needs. The emerging evidence base for SP demonstrates variability in the design and implementation of different SP initiatives. To effectively address these needs, coproduction among clients, communities, stakeholders, and policy makers is important for tailoring SP initiatives for optimal uptake. Objective: This study aims to explore the role of coproduction in SP initiatives. The research question is as follows: How and for what purpose has coproduction been incorporated across a range of SP initiatives for different clients? Methods: A review of international literature will be conducted following the JBI guidelines for scoping reviews. We will search multiple databases including Scopus, MEDLINE, and the PAIS Index, as well as gray literature, from 2000 to 2023. The primary studies included will describe a nonmedical need for clients, a nonmedical SP program or initiative, coproduction of the SP program, and any follow-up. Review articles and commentaries will be excluded. Titles, abstracts, and full-text articles will be screened, and data will be extracted by at least 2 research team members using Covidence and a pilot-tested extraction template. Clients with lived experience will also participate in the research process. Findings will be descriptively summarized and thematically synthesized to answer the research question. Results: The project was funded in 2023, and the results are expected to be submitted for publication in early 2025. Conclusions: Descriptions of what coproduction is meant to accomplish may differ from theoretical aspirations. Continued understanding of how coproduction has been designed and executed across varied international SP models is important for framing engagement in practice for future SP arrangements and their evaluation. We anticipate this review will guide clients, communities, stakeholders, and policy makers in further developing SP practice within health care systems. Trial Registration: Open Science Framework Registries B8U4Z; https://osf.io/b8u4z International Registered Report Identifier (IRRID): DERR1-10.2196/57062 UR - https://www.researchprotocols.org/2024/1/e57062 UR - http://dx.doi.org/10.2196/57062 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57062 ER - TY - JOUR AU - Wu, Manli AU - Yan, Jun AU - Qiao, Chongming AU - Yan, Chu PY - 2024/10/17 TI - Impact of Concurrent Media Exposure on Professional Identity: Cross-Sectional Study of 1087 Medical Students During Long COVID JO - J Med Internet Res SP - e50057 VL - 26 KW - COVID-19 KW - media exposure KW - social support KW - professional identity KW - medical students KW - Stimulus-Organism-Response framework N2 - Background: Long COVID has widened the health gap across society and highlighted the vulnerabilities and risks faced by health care systems. For instance, the global trend of medical workers resigning has become a prominent topic on social media. In response to this severe social problem in global public health within the digital society, it is urgent to investigate how the professional identity of medical students, who are digital natives and the future workforce of medical practitioners, is affected by the media environment. Objective: This study aims to examine how media exposure relates to medical students? perceptions of informational and emotional support, and how these perceptions further influence the development of their professional identity. Methods: Building on the Stimulus-Organism-Response (SOR) framework, this study develops a theoretical model to illustrate how media exposure affects medical students? professional identity through the mediation of social support. Specifically, media exposure was assessed through online news media and social media exposure; social support was evaluated in terms of informational and emotional support; and professional identity was measured through medical students? sense of belonging and professional commitment. A survey was conducted at a medical school in China, yielding 1087 valid responses that were analyzed using SmartPLS 4.0. Results: Consistent with our expectations, online news media exposure was positively associated with both informational support (?=.163; P<.001) and emotional support (?=.084; P=.007). Similarly, social media exposure showed positive associations with informational support (?=.122; P<.001) and emotional support (?=.235; P<.001). Thereafter, informational support (?=.228; P<.001) and emotional support (?=.344; P<.001) were positively associated with students? sense of belonging. Meanwhile, both informational support (?=.245; P<.001) and emotional support (?=.412; P<.001) positively impacted medical students? professional commitment. In addition, a mediation test was conducted. The results confirmed that informational support and emotional support partially mediated the effect of online news media, while fully mediating the effect of social media on medical students? sense of belonging and professional commitment. Conclusions: This study finds that exposure to online news media and social media can enhance medical students? sense of belonging and professional commitment through the formation of informational and emotional support. It expands the discussion on the role of media in providing social support and facilitating the development of medical students? professional identity. This is a valuable contribution to addressing complex public health crises through effective media governance in the network era. UR - https://www.jmir.org/2024/1/e50057 UR - http://dx.doi.org/10.2196/50057 UR - http://www.ncbi.nlm.nih.gov/pubmed/39418080 ID - info:doi/10.2196/50057 ER - TY - JOUR AU - Onishi, Ryuta PY - 2024/10/11 TI - Parenting-Related Social Networking Site Use and Psychological Distress in Parents of Infants: Cross-sectional Study Exploring the Moderating Effects of Loneliness and Parenting Anxiety JO - JMIR Pediatr Parent SP - e59029 VL - 7 KW - social networking sites KW - social media KW - psychological distress KW - loneliness KW - anxiety KW - social support KW - mother KW - father KW - infant KW - psychological KW - distress KW - children KW - web-based questionnaire KW - parent N2 - Background: In the digital age, social networking sites (SNSs) have revolutionized the approach to parenting. These platforms, widely used to access parenting information and support, affect parents both positively and negatively, with negative effects potentially increasing for those experiencing loneliness or anxiety. Objective: This study examined the relationship between SNS use and psychological distress among parents of young children, controlling for the moderating effects of loneliness and parenting anxiety. We hypothesized that higher SNS use correlates to greater psychological distress, particularly among parents with elevated levels of loneliness or parenting anxiety. Methods: A cross-sectional survey design using a closed web-based questionnaire was employed. Participants included 429 parents (205 mothers and 224 fathers) of children aged 0?3 years recruited through a web-based survey company in Japan. The majority of the participants were couples, with some living with extended family members. The sample also encompassed individuals in cohabiting partnerships and single parents. The survey included measures of psychological distress, loneliness, parenting anxiety, frequency of SNS use for parenting, and covariates. Analytical models to explain psychological distress included interactions between loneliness or parenting anxiety and SNS use, individually for both fathers and mothers. Results: For mothers, a significant interaction effect was determined only between parenting anxiety and SNS use (b=0.247, SE 0.091; P=.008). Meanwhile, for fathers, significant interaction effects were observed for both loneliness (b=0.324, SE 0.127; P=.012) and parenting anxiety (b=0.144, SE 0.069; P=.038) with SNS use. A simple slope analysis for mothers indicated that SNS use was related to psychological distress only at higher levels of parenting anxiety (b=0.304, SE 0.090, ?=.317; P<.001). Among fathers, SNS use was associated with psychological distress at higher levels of either parenting anxiety (b=0.330, SE 0.069, ?=.346; P<.001) or loneliness (b=0.390, SE 0.098, ?=.409; P<.001). Conclusions: The study concluded that the relationship between SNS use and psychological distress among parents of young children is moderated by loneliness and parenting anxiety. The findings highlight the need for tailored approaches to help parents manage SNS use, particularly focusing on those with higher levels of loneliness and parenting anxiety. It is imperative that health professionals provide nuanced guidance to parents on SNS use, considering individual psychological factors and potential gender differences in the impact of SNSs on mental well-being. UR - https://pediatrics.jmir.org/2024/1/e59029 UR - http://dx.doi.org/10.2196/59029 ID - info:doi/10.2196/59029 ER - TY - JOUR AU - Feng, Xiandong AU - Hu, Yinhuan AU - Pfaff, Holger AU - Liu, Sha AU - Xie, Jinzhu AU - Zhang, Zemiao PY - 2024/10/10 TI - Exploring Client Preferences for Psychological Counselors in a Chinese Online Health Community: Longitudinal Study JO - J Med Internet Res SP - e58428 VL - 26 KW - signaling theory KW - psychological counselor KW - online health communities KW - clients? choice N2 - Background: Although online health communities are acknowledged for their role in bridging the supply-demand gap in mental health services, the client decision-making process in these environments remains underexplored. Objective: This study aimed to explore the impact of different signals presented on psychological counselors? home pages on clients? choices. Methods: Adopting signaling theory as the framework, this study classified information into online and offline signals and developed a theoretical model to examine client choice behaviors. We collected data from 487 psychological counselors in a leading Chinese online mental health community during March, June, September, and December 2023. Based on these data, we constructed a 4-period balanced panel dataset. A fixed effects model was used to analyze which signals influence clients? choices of psychological counselors. Results: Regarding online signals, the service price (?=0.186, P<.001) and online reputation (?=0.489, P=.002) of psychological counselors positively influence clients? choices. Concerning offline signals, psychological counselors? practical experience (?=0.007, P<.001) is positively related to clients? choices. Moreover, the results indicate that the relationship between a counselor?s prosocial behavior and clients? choices is not linear but rather exhibits an inverted U-shape. Conclusions: This study reveals that the varied information provided by psychological counselors has distinct impacts on clients? choices in online health communities. It broadens the application of signaling theory to online behaviors and emphasizes the importance of both online and offline signals. These insights offer strategic guidance for counselors and online platforms to better meet potential clients? needs by optimizing the information presented on psychological counselors? home pages. UR - https://www.jmir.org/2024/1/e58428 UR - http://dx.doi.org/10.2196/58428 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58428 ER - TY - JOUR AU - Turjo, Das Manoshi AU - Mundada, Suchit Khushboo AU - Haque, Jabeen Nuzhat AU - Ahmed, Nova PY - 2024/10/7 TI - Predicting the Transition From Depression to Suicidal Ideation Using Facebook Data Among Indian-Bangladeshi Individuals: Protocol for a Cohort Study JO - JMIR Res Protoc SP - e55511 VL - 13 KW - human-computer interaction KW - depression KW - suicidal ideation KW - mental health KW - India KW - Bangladesh KW - Facebook KW - major depressive disorder KW - MDD KW - 9-item Patient Health Questionnaire KW - PHQ-9 KW - natural language processing KW - NLP KW - machine learning KW - ML N2 - Background: Suicide stands as a global public health concern with a pronounced impact, especially in low- and middle-income countries, where it remains largely unnoticed as a significant health concern, leading to delays in diagnosis and intervention. South Asia, in particular, has seen limited development in this area of research, and applying existing models from other regions is challenging due to cost constraints and the region?s distinct linguistics and behavior. Social media analysis, notably on platforms such as Facebook (Meta Platforms Inc), offers the potential for detecting major depressive disorder and aiding individuals at risk of suicidal ideation. Objective: This study primarily focuses on India and Bangladesh, both South Asian countries. It aims to construct a predictive model for suicidal ideation by incorporating unique, unexplored features along with masked content from both public and private Facebook profiles. Moreover, the research aims to fill the existing research gap by addressing the distinct challenges posed by South Asia?s unique behavioral patterns, socioeconomic conditions, and linguistic nuances. Ultimately, this research strives to enhance suicide prevention efforts in the region by offering a cost-effective solution. Methods: This quantitative research study will gather data through a web-based platform. Initially, participants will be asked a few demographic questions and to complete the 9-item Patient Health Questionnaire assessment. Eligible participants who provide consent will receive an email requesting them to upload a ZIP file of their Facebook data. The study will begin by determining whether Facebook is the primary application for the participants based on their active hours and Facebook use duration. Subsequently, the predictive model will incorporate a wide range of previously unexplored variables, including anonymous postings, and textual analysis features, such as captions, biographic information, group membership, preferred pages, interactions with advertisement content, and search history. The model will also analyze the use of emojis and the types of games participants engage with on Facebook. Results: The study obtained approval from the scientific review committee on October 2, 2023, and subsequently received institutional review committee ethical clearance on December 8, 2023. Our system is anticipated to automatically detect posts related to depression by analyzing the text and use pattern of the individual with the best accuracy possible. Ultimately, our research aims to have practical utility in identifying individuals who may be at risk of depression or in need of mental health support. Conclusions: This initiative aims to enhance engagement in suicidal ideation medical care in South Asia to improve health outcomes. It is set to be the first study to consider predicting participants? primary social application use before analyzing their content to forecast behavior and mental states. The study holds the potential to revolutionize strategies and offer insights for scalable, accessible interventions while maintaining quality through comprehensive Facebook feature analysis. International Registered Report Identifier (IRRID): DERR1-10.2196/55511 UR - https://www.researchprotocols.org/2024/1/e55511 UR - http://dx.doi.org/10.2196/55511 UR - http://www.ncbi.nlm.nih.gov/pubmed/39374059 ID - info:doi/10.2196/55511 ER - TY - JOUR AU - Le, Nicolette AU - McMann, Tiana AU - Yang, Luning AU - Li, Zhuoran AU - Cuomo, E. Raphael AU - Mackey, K. Tim PY - 2024/10/2 TI - Detection and Characterization of Online Substance Use Discussions Among Gamers: Qualitative Retrospective Analysis of Reddit r/StopGaming Data JO - JMIR Infodemiology SP - e58201 VL - 4 KW - internet gaming disorder KW - gaming disorder KW - substance use KW - alcohol use KW - nicotine use KW - stimulants KW - gaming KW - internet gaming KW - video games KW - addiction KW - addiction medicine KW - digital mental health KW - reddit N2 - Background: Video games have rapidly become mainstream in recent decades, with over half of the US population involved in some form of digital gaming. However, concerns regarding the potential harms of excessive, disordered gaming have also risen. Internet gaming disorder (IGD) has been proposed as a tentative psychiatric disorder that requires further study by the American Psychological Association (APA) and is recognized as a behavioral addiction by the World Health Organization. Substance use among gamers has also become a concern, with caffeinated or energy drinks and prescription stimulants commonly used for performance enhancement. Objective: This study aimed to identify substance use patterns and health-related concerns among gamers among a population of Reddit users. Methods: We used the public streaming Reddit application programming interface to collect and analyze all posts from the popular subreddit, r/StopGaming. From this corpus of posts, we filtered the dataset for keywords associated with common substances that may be used to enhance gaming performance. We then applied an inductive coding approach to characterize substance use behaviors, gaming genres, and physical and mental health concerns. Potential disordered gaming behavior was also identified using the tentative IGD guidelines proposed by the APA. A chi-square test of independence was used to assess the association between gaming disorder and substance use characteristics, and multivariable logistic regression was used to analyze whether mental health discussion or the mention of any substance with sufficient sample size was significantly associated with IGD. Results: In total, 10,551 posts were collected from Reddit from June 2017 to December 2022. After filtering the dataset for substance-related keywords, 1057 were included for further analysis, of which 286 mentioned both gaming and the use of ?1 substances. Among the 286 posts that discussed both gaming and substance use, the most mentioned substances were alcohol (n=132), cannabis (n=104), and nicotine (n=48), while the most mentioned genres were role-playing games (n=120), shooters (n=90), and multiplayer online battle arenas (n=43). Self-reported behavior that aligned with the tentative guidelines for IGD was identified in 66.8% (191/286) posts. More than half, 62.9% (180/286) of the posts, discussed a health issue, with the majority (n=144) cited mental health concerns. Common mental health concerns discussed were depression and anxiety. There was a significant association between IGD and substance use (P<.001; chi-square test), and there were significantly increased odds of IGD among those who self-reported substance use (odds ratio 2.29, P<.001) and those who discussed mental health (odds ratio 1.64, P<.03). Conclusions: As gaming increasingly becomes highly prevalent among various age groups and demographics, a better understanding of the interplay and convergence among disordered gaming, substance use, and negative health impacts can inform the development of interventions to mitigate risks and promote healthier gaming habits. UR - https://infodemiology.jmir.org/2024/1/e58201 UR - http://dx.doi.org/10.2196/58201 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58201 ER - TY - JOUR AU - Ong, E. Laura AU - Speicher, Sarah AU - Villasenor, Diana AU - Kim, Jamie AU - Jacobs, Adam AU - Macia, S. Kathryn AU - Cloitre, Marylene PY - 2024/10/2 TI - Brief Peer-Supported Web-Based Skills Training in Affective and Interpersonal Regulation (BPS webSTAIR) for Trauma-Exposed Veterans in the Community: Randomized Controlled Trial JO - J Med Internet Res SP - e52130 VL - 26 KW - posttraumatic stress disorder KW - PTSD KW - depression KW - depressive symptoms KW - veterans KW - veterans health KW - mHealth KW - mobile health KW - peer support KW - peer-to-peer KW - transdiagnostic KW - mental health KW - mental health services KW - community KW - emotion regulation KW - interpersonal regulation KW - mHealth program N2 - Background: Peer-supported mobile health (mHealth) programs hold the promise of providing a low-burden approach to increasing access to care and improving mental health. While peer support has been shown to improve engagement in care, there is limited investigation into the impact of peers on symptom outcomes. Trauma-exposed populations frequently endure co-occurring posttraumatic stress and depressive symptoms as well as difficulties in day-to-day functioning. This study evaluated the potential benefits of a peer-supported, transdiagnostic mHealth program on symptom outcomes and functioning. Objective: This randomized controlled trial tested the effectiveness of Brief Peer-Supported (BPS) web-based Skills Training in Affective and Interpersonal Regulation (webSTAIR), a 6-module transdiagnostic digital program derived from Skills Training in Affective and Interpersonal Regulation and compared to waitlist control in a community sample of veterans who screened positive for either posttraumatic stress disorder (PTSD) or depression. Methods: A total of 178 veterans were enrolled in this study using a 2:1 randomization scheme with 117 assigned to BPS webSTAIR and 61 assigned to waitlist control. PTSD and depressive symptoms as well as emotion regulation and psychosocial functioning were assessed at pretreatment, posttreatment, and 8-week follow-up time points. Mixed-effects models were used to assess change in outcome measures across time points. Exploratory analyses were conducted to determine whether the type and number of peer interactions influenced outcomes. Results: Significant interaction effects were observed for all outcomes such that participants randomized to BPS webSTAIR reported significantly greater improvement at the posttreatment time point compared to waitlist control with moderate effect sizes for PTSD (d=0.48), depression (d=0.64), emotion regulation (d=0.61), and functional impairment (d=0.61); gains were maintained at 8-week follow-up. An initial cohort of participants who were required to engage with a peer coach to progress through the modules interacted more frequently with peers but completed fewer modules compared to a later cohort for whom peer engagement was optional. Overall, those who completed more modules reported greater improvement in all outcomes. Conclusions: BPS webSTAIR was effective in improving PTSD and depression symptoms, emotion regulation, and psychosocial functioning in community veterans. Peer-supported, transdiagnostic mHealth programs may be a particularly efficient, effective, and low-burden approach to improving mental health among trauma-exposed populations. Investigation of peer-supported programs among other populations is necessary to evaluate the generalizability of the findings. Analyses comparing peer support that was required versus optional indicated that some veterans may not need or want peer support. Future research should evaluate how best to deliver peer support and for whom it is most beneficial. If successful, peer-supported tech programs may increase the Veteran Affairs workforce as well as improve veteran mental health services and outcomes. Trial Registration: ClinicalTrials.gov NCT04286165; https://clinicaltrials.gov/study/NCT04286165 UR - https://www.jmir.org/2024/1/e52130 UR - http://dx.doi.org/10.2196/52130 UR - http://www.ncbi.nlm.nih.gov/pubmed/39012722 ID - info:doi/10.2196/52130 ER - TY - JOUR AU - Andreas, Marike AU - Grundinger, Nadja AU - Wolber, Nadine AU - Szafran, Daria AU - Görig, Tatiana AU - Mons, Ute AU - Lohner, Valerie AU - Vollstädt-Klein, Sabine AU - Schneider, Sven PY - 2024/10/1 TI - Understanding e-Cigarette Addictiveness: Triangulation of Focus Group and Netnographic Data JO - J Med Internet Res SP - e57970 VL - 26 KW - e-cigarettes KW - online forums KW - netnographic analysis KW - addictive KW - addiction KW - smoking cessation KW - smoker KW - user KW - focus group KW - nicotine KW - public health KW - prevalence KW - smoking behavior N2 - Background: Numerous studies have shown that e-cigarettes are addictive. For example, we previously showed that users of e-cigarette online forums discuss experiences of addiction in a netnographic analysis. However, it is unclear what makes e-cigarettes addictive apart from nicotine. In a focus group analysis, we recently identified 3 unique features of e-cigarettes that users linked to experiences of addiction: the pleasant taste, unobtrusiveness, and unlimited usability of e-cigarettes. Objective: This study aimed to validate the previously identified features of e-cigarette addictive potential by triangulating data from the netnographic analysis and focus group discussions. Methods: Drawing on a netnographic analysis of 3 popular, German-language e-cigarette forums, we studied whether experiences of addiction were linked to specific e-cigarette features. We included 451 threads in the analysis that had been coded for addictive experiences in a previous study by our team. First, we conducted a deductive analysis with preregistered codes to determine whether the features of pleasant taste, unobtrusiveness, and unlimited usability were mentioned in relation to the addictive potential of e-cigarettes in the online forums. Second, an inductive approach was chosen to identify further possible addictive features of e-cigarettes. Results: Our deductive analysis confirmed that the features highlighted in our previous focus group study (pleasant taste, unobtrusiveness, and unlimited usability) were also frequently discussed in online forums in connection to addictive symptoms. In addition, our inductive analysis identified nicotine dosage as a significant feature linked to addiction. Users reported varying their nicotine doses for different reasons, leading to the identification of four distinct user types based on dosing patterns: (1) high doses for intermittent, (2) high doses for constant use, (3) low doses for constant use, and (4) switching between high and low doses depending on the situation. Conclusions: Our comprehensive analysis of online forum threads revealed that users? experiences of addiction are linked to 4 specific features unique to e-cigarettes: pleasant taste, unobtrusiveness, unlimited usability, and nicotine dosage. Recognizing these addictive features of e-cigarettes is crucial for designing cessation programs and informing public health policies to reduce the addictiveness of e-cigarettes. UR - https://www.jmir.org/2024/1/e57970 UR - http://dx.doi.org/10.2196/57970 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57970 ER - TY - JOUR AU - Liu, Yuhan AU - Fang, Anna AU - Moriarty, Glen AU - Firman, Cristopher AU - Kraut, E. Robert AU - Zhu, Haiyi PY - 2024/10/1 TI - Exploring Trade-Offs for Online Mental Health Matching: Agent-Based Modeling Study JO - JMIR Form Res SP - e58241 VL - 8 KW - agent-based modeling KW - mental health KW - algorithmic matching KW - social computing KW - online communities N2 - Background: Online mental health communities (OMHCs) are an effective and accessible channel to give and receive social support for individuals with mental and emotional issues. However, a key challenge on these platforms is finding suitable partners to interact with given that mechanisms to match users are currently underdeveloped or highly naive. Objective: In this study, we collaborated with one of the world?s largest OMHCs; our contribution is to show the application of agent-based modeling for the design of online community matching algorithms. We developed an agent-based simulation framework and showcased how it can uncover trade-offs in different matching algorithms between people seeking support and volunteer counselors. Methods: We used a comprehensive data set spanning January 2020 to April 2022 to create a simulation framework based on agent-based modeling that replicates the current matching mechanisms of our research site. After validating the accuracy of this simulated replication, we used this simulation framework as a ?sandbox? to test different matching algorithms based on the deferred acceptance algorithm. We compared trade-offs among these different matching algorithms based on various metrics of interest, such as chat ratings and matching success rates. Results: Our study suggests that various tensions emerge through different algorithmic choices for these communities. For example, our simulation uncovered that increased waiting time for support seekers was an inherent consequence on these sites when intelligent matching was used to find more suitable matches. Our simulation also verified some intuitive effects, such as that the greatest number of support seeker?counselor matches occurred using a ?first come, first served? protocol, whereas relatively fewer matches occurred using a ?last come, first served? protocol. We also discuss practical findings regarding matching for vulnerable versus overall populations. Results by demographic group revealed disparities?underaged and gender minority groups had lower average chat ratings and higher blocking rates on the site when compared to their majority counterparts, indicating the potential benefits of algorithmically matching them. We found that some protocols, such as a ?filter?-based approach that matched vulnerable support seekers only with a counselor of their same demographic, led to improvements for these groups but resulted in lower satisfaction (?12%) among the overall population. However, this trade-off between minority and majority groups was not observed when using ?topic? as a matching criterion. Topic-based matching actually outperformed the filter-based protocol among underaged people and led to significant improvements over the status quo among all minority and majority groups?specifically, a 6% average chat rating improvement and a decrease in blocking incidents from 5.86% to 4.26%. Conclusions: Agent-based modeling can reveal significant design considerations in the OMHC context, including trade-offs in various outcome metrics and the potential benefits of algorithmic matching for marginalized communities. UR - https://formative.jmir.org/2024/1/e58241 UR - http://dx.doi.org/10.2196/58241 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58241 ER - TY - JOUR AU - Thulin, J. Elyse AU - Walton, A. Maureen AU - Bonar, E. Erin AU - Fernandez, Anne PY - 2024/9/27 TI - Examining the Popularity, Content, and Intersections With the Substance Abuse and Mental Health Services Administration?s Definition of Recovery in a Nonclinical Online Cannabis Cessation Community: Infodemiology Study of Reddit Posts JO - J Med Internet Res SP - e47357 VL - 26 KW - cannabis use disorder KW - online community KW - cannabis KW - human-computer interaction KW - mobile phone N2 - Background: Cannabis consumption has increased in recent years, as has cannabis use disorder. While researchers have explored public online community discussions of active cannabis use, less is known about the popularity and content of publicly available online communities intended to support cannabis cessation. Objective: This study aims to examine the level of engagement and dominant content of an online community for cannabis cessation through 3 specific aims. First, we examine the use of a subreddit cannabis cessation community (r/leaves) over time to evaluate the popularity of this type of resource for individuals who want to stop using cannabis. Second, we examine the content of posts in the community to identify popular topics related to cessation. Third, we compare the thematic findings relative to the 4 domains of recovery defined by the Substance Abuse and Mental Health Services Administration (SAMHSA). By examining these 3 gaps, we take the initial steps toward understanding the experiences being shared online among individuals interested in cannabis cessation and compare them with the principles outlined in the SAMHSA definition of recovery. Methods: Using the Pushshift application programming interface, we collected the count of posts by year between 2011 and 2021 and the narrative of the 100 posts with the most comments per year in a popular cannabis cessation?focused subreddit (r/leaves). A linear model and a nonlinear model were compared to evaluate change in the number of posts by year. Mixed natural language processing and qualitative analyses were applied to identify top terms, phrases, and themes present in posts over time. Overlap between themes and the 4 SAMHSA domains of recovery (health, purpose, community, and home) were examined. Results: The number of annual posts in r/leaves increased from 420 in 2011 to 34,841 in 2021 (83-fold increase), with exponential growth since 2018. The term that was the most common across posts was ?smoke? (2019 posts). Five major themes were identified, and a narrative arc was represented, from motivations and perceived benefits of cannabis use to the negative consequences of use, strategies to change behaviors, and the positive and negative consequences of change. There was substantial overlap between these 5 themes and 3 of SAMHSA?s 4 domains of recovery: health, purpose, and community. However, the domain of home was less commonly identified. Conclusions: Engagement in this online cannabis support community appears to be increasing. Individuals using this forum discussed several topics, including multiple aspects of recovery defined by the SAMHSA. Online communities, such as this one may, serve as an important pathway for individuals seeking to reduce or cease their consumption of cannabis. UR - https://www.jmir.org/2024/1/e47357 UR - http://dx.doi.org/10.2196/47357 UR - http://www.ncbi.nlm.nih.gov/pubmed/39331460 ID - info:doi/10.2196/47357 ER - TY - JOUR AU - Al-Adili, Lina AU - Malmqvist, Moa AU - Reinius, Maria AU - Helispää Rodriguez, Inka AU - Stenfors, Terese AU - Brommels, Mats PY - 2024/9/12 TI - Implementation of a Recovery College Embedded in a Swedish Psychiatry Organization: Qualitative Case Study JO - J Particip Med SP - e55882 VL - 16 KW - mental health KW - educational intervention KW - recovery college KW - implementation research approach KW - qualitative research KW - coproduction N2 - Background: Recovery colleges are service user?led educational interventions aiming at empowering people with mental health issues and promoting recovery through peer learning. Despite the increasing interest in recovery colleges in recent years and the demonstrated beneficial effects for users, there is limited research addressing aspects that influence their implementation. This knowledge is necessary for the successful integration of such interventions in various contexts. Objective: This study aims to explore factors that influence the implementation of a recovery college embedded within a Swedish psychiatry organization. Methods: A qualitative case study of a recovery college based on semistructured interviews with 8 course participants, 4 course leaders, and 4 clinical staff was conducted. The transcripts were scrutinized with conventional content analysis, and the interpretation of results was guided by the Consolidated Framework for Implementation Research. Results: The findings highlight key areas that either hinder or promote the successful implementation of the recovery college. These areas included recruitment, resources, staff attitudes, and ways of organizing courses. Each area has elements that appear both as facilitators and barriers, demonstrating the duality of conditions. Conclusions: Allocating dedicated resources, engaging individuals with service user experience as organizers who are willing to share their personal experience, having an open-door policy, creating an open space for participants to share their experiences, and offering practical advice and written material are useful to create favorable conditions for a recovery college to reach its goals of empowering psychiatry service users. UR - https://jopm.jmir.org/2024/1/e55882 UR - http://dx.doi.org/10.2196/55882 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/55882 ER - TY - JOUR AU - Necaise, Aaron AU - Amon, Jean Mary PY - 2024/9/5 TI - Peer Support for Chronic Pain in Online Health Communities: Quantitative Study on the Dynamics of Social Interactions in a Chronic Pain Forum JO - J Med Internet Res SP - e45858 VL - 26 KW - social media KW - chronic pain KW - peer support KW - sentiment analysis KW - wavelet analysis KW - nonlinear dynamics KW - growth curve modeling KW - online health communities KW - affective synchrony N2 - Background: Peer support for chronic pain is increasingly taking place on social media via social networking communities. Several theories on the development and maintenance of chronic pain highlight how rumination, catastrophizing, and negative social interactions can contribute to poor health outcomes. However, little is known regarding the role web-based health discussions play in the development of negative versus positive health attitudes relevant to chronic pain. Objective: This study aims to investigate how participation in online peer-to-peer support communities influenced pain expressions by examining how the sentiment of user language evolved in response to peer interactions. Methods: We collected the comment histories of 199 randomly sampled Reddit (Reddit, Inc) users who were active in a popular peer-to-peer chronic pain support community over 10 years. A total of 2 separate natural language processing methods were compared to calculate the sentiment of user comments on the forum (N=73,876). We then modeled the trajectories of users? language sentiment using mixed-effects growth curve modeling and measured the degree to which users affectively synchronized with their peers using bivariate wavelet analysis. Results: In comparison to a shuffled baseline, we found evidence that users entrained their language sentiment to match the language of community members they interacted with (t198=4.02; P<.001; Cohen d=0.40). This synchrony was most apparent in low-frequency sentiment changes unfolding over hundreds of interactions as opposed to reactionary changes occurring from comment to comment (F2,198=17.70; P<.001). We also observed a significant trend in sentiment across all users (?=?.02; P=.003), with users increasingly using more negative language as they continued to interact with the community. Notably, there was a significant interaction between affective synchrony and community tenure (?=.02; P=.02), such that greater affective synchrony was associated with negative sentiment trajectories among short-term users and positive sentiment trajectories among long-term users. Conclusions: Our results are consistent with the social communication model of pain, which describes how social interactions can influence the expression of pain symptoms. The difference in long-term versus short-term affective synchrony observed between community members suggests a process of emotional coregulation and social learning. Participating in health discussions on Reddit appears to be associated with both negative and positive changes in sentiment depending on how individual users interacted with their peers. Thus, in addition to characterizing the sentiment dynamics existing within online chronic pain communities, our work provides insight into the potential benefits and drawbacks of relying on support communities organized on social media platforms. UR - https://www.jmir.org/2024/1/e45858 UR - http://dx.doi.org/10.2196/45858 UR - http://www.ncbi.nlm.nih.gov/pubmed/39235845 ID - info:doi/10.2196/45858 ER - TY - JOUR AU - Boensvang, Nybro Natasha AU - Weibel, Mette AU - Wakefield, E. Claire AU - Bidstrup, Envold Pernille AU - Olsen, Marianne AU - Nissen, Bækgaard Karin AU - Spager, Vibeke AU - Fridh, Kaj Martin AU - Larsen, Bækgaard Hanne PY - 2024/9/4 TI - Online Ambassador Visits for Hospitalized Children With Cancer: Qualitative Evaluation of Implementation JO - JMIR Pediatr Parent SP - e53309 VL - 7 KW - Children KW - cancer KW - school-aged KW - peers KW - interaction KW - online KW - in-hospital KW - social KW - relationship KW - quality of life KW - intervention KW - qualiative N2 - Background: Children with cancer or cancer-like disease risk treatment-related isolation, which can negatively impact their peer relationships and social competencies and exacerbate their loneliness. During the COVID-19 pandemic, increased online socialization became the new normal imposed by national isolation guidelines. To adhere to the treatment-related isolation guidelines, children with cancer were offered online classmate ?ambassador? visits during hospitalization. Objective: This study aimed to identify facilitators and barriers to online classmate ?ambassador? visits during children with cancer?s hospitalization through a qualitative descriptive process evaluation using the Consolidated Framework for Implementation Research. Methods: From January to April 2022, we conducted 39 individual semistructured interviews with hospitalized children (n=16), their classmates (n=16), teachers from their schools (n=3), and study nurses (n=4) from involved hospitals. Most interviews (n=37, 95%) were conducted online using Microsoft Teams or Google Meet, while 2 (5%) interviews were conducted in person at the participants? residences. This approach allowed us to gain a broad understanding of the facilitators and barriers to online ambassador visits. Results: We identified four themes: (1) working together, (2) ensuring participation, (3) staying connected, and (4) together online. The themes are described in terms of facilitators and barriers to online ambassador visits with 3 Consolidated Framework for Implementation Research domains: innovation, individuals, and the implementation process. Conclusions: Addressing the social needs of hospitalized children through online visits with their classmates may be relevant when one-on-one meetings are problematic. The online visits are highly dependent on collaboration between study nurses and teachers and assessing the needs of the hospitalized children. While a high degree of adult engagement and a stable internet connection are pivotal, these online visits can promote much-needed social interaction between children across physical settings. UR - https://pediatrics.jmir.org/2024/1/e53309 UR - http://dx.doi.org/10.2196/53309 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/53309 ER - TY - JOUR AU - Kwok, Ian AU - Freedman, Melanie AU - Kamsickas, Lisa AU - Lattie, G. Emily AU - Yang, Dershung AU - Moskowitz, Tedlie Judith PY - 2024/9/3 TI - The SoCAP (Social Communication, Affiliation, and Presence) Taxonomy of Social Features: Scoping Review of Commercially Available eHealth Apps JO - J Med Internet Res SP - e49714 VL - 26 KW - eHealth KW - digital interventions KW - social features KW - taxonomy KW - computer-human interaction KW - social connection KW - engagement KW - eHealth apps KW - intervention KW - mental health KW - behavioral health KW - mobile app N2 - Background: eHealth interventions have proven to be valuable resources for users with diverse mental and behavioral health concerns. As these technologies continue to proliferate, both academic researchers and commercial app creators are leveraging the use of features that foster a sense of social connection on these digital platforms. Yet, the literature often insufficiently represents the functionality of these key social features, resulting in a lack of understanding of how they are being implemented. Objective: This study aimed to conduct a methodical review of commercially available eHealth apps to establish the SoCAP (social communication, affiliation, and presence) taxonomy of social features in eHealth apps. Our goal was to examine what types of social features are being used in eHealth apps and how they are implemented. Methods: A scoping review of commercially available eHealth apps was conducted to develop a taxonomy of social features. First, a shortlist of the 20 highest-rated eHealth apps was derived from One Mind PsyberGuide, a nonprofit organization with trained researchers who rate apps based on their (1) credibility, (2) user experience, and (3) transparency. Next, both mobile- and web-based versions of each app were double-coded by 2 trained raters to derive a list of social features. Subsequently, the social features were organized by category and tested on other apps to ensure their completeness. Results: Four main categories of social features emerged: (1) communication features (videoconferencing, discussion boards, etc), (2) social presence features (chatbots, reminders, etc), (3) affiliation and identity features (avatars, profiles, etc), and (4) other social integrations (social network and other app integrations). Our review shows that eHealth apps frequently use resource-intensive interactions (eg, videoconferencing with a clinician and phone calls from a facilitator), which may be helpful for participants with high support needs. Furthermore, among commercially available eHealth apps, there is a strong reliance on automated features (eg, avatars, personalized multimedia, and tailored content) that enhance a sense of social presence without requiring a high level of input from a clinician or staff member. Conclusions: The SoCAP taxonomy includes a comprehensive list of social features and brief descriptions of how these features work. This classification system will provide academic and commercial eHealth app creators with an understanding of the various social features that are commonly implemented, which will allow them to apply these features to enhance their own apps. Future research may include comparing the synergistic effects of various combinations of these social features. UR - https://www.jmir.org/2024/1/e49714 UR - http://dx.doi.org/10.2196/49714 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/49714 ER - TY - JOUR AU - Sharma, Pravesh AU - Tranby, Brianna AU - Kamath, Celia AU - Brockman, A. Tabetha AU - Lenhart, Ned AU - Quade, Brian AU - Abuan, Nate AU - Halom, Martin AU - Staples, Jamie AU - Young, Colleen AU - Brewer, LaPrincess AU - Patten, Christi PY - 2024/8/26 TI - Beta Test of a Christian Faith-Based Facebook Intervention for Smoking Cessation in Rural Communities (FaithCore): Development and Usability Study JO - JMIR Form Res SP - e58121 VL - 8 KW - social media KW - Facebook KW - rural KW - smoking KW - cessation KW - quitline KW - community-based participatory research KW - CBPR KW - FaithCore KW - mobile phone N2 - Background: Individuals living in rural communities experience substantial geographic and infrastructure barriers to attaining health equity in accessing tobacco use cessation treatment. Social media and other digital platforms offer promising avenues to improve access and overcome engagement challenges in tobacco cessation efforts. Research has also shown a positive correlation between faith-based involvement and a lower likelihood of smoking, which can be used to engage rural communities in these interventions. Objective: This study aimed to develop and beta test a social intervention prototype using a Facebook (Meta Platforms, Inc) group specifically designed for rural smokers seeking evidence-based smoking cessation resources. Methods: We designed a culturally aligned and faith-aligned Facebook group intervention, FaithCore, tailored to engage rural people who smoke in smoking cessation resources. Both intervention content and engagement strategies were guided by community-based participatory research principles. Given the intervention?s focus on end users, that is, rural people who smoked, we conducted a beta test to assess any technical or usability issues of this intervention before any future trials for large-scale implementation. Results: No critical beta test technical and usability issues were noted. Besides, the FaithCore intervention was helpful, easy to understand, and achieved its intended goals. Notably, 90% (9/10) of the participants reported that they tried quitting smoking, while 90% (9/10) reported using or seeking cessation resources discussed within the group. Conclusions: This study shows that social media platform with culturally aligned and faith-aligned content and engagement strategies delivered by trained moderators are promising for smoking cessation interventions in rural communities. Our future step is to conduct a large pilot trial to evaluate the intervention?s effectiveness on smoking cessation outcomes. UR - https://formative.jmir.org/2024/1/e58121 UR - http://dx.doi.org/10.2196/58121 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58121 ER - TY - JOUR AU - Rao, K. Varun AU - Valdez, Danny AU - Muralidharan, Rasika AU - Agley, Jon AU - Eddens, S. Kate AU - Dendukuri, Aravind AU - Panth, Vandana AU - Parker, A. Maria PY - 2024/8/23 TI - Digital Epidemiology of Prescription Drug References on X (Formerly Twitter): Neural Network Topic Modeling and Sentiment Analysis JO - J Med Internet Res SP - e57885 VL - 26 KW - digital epidemiology KW - BERTtopic KW - Valence Aware Dictionary and Sentiment Reasoner KW - VADER KW - sentiment analysis KW - social media KW - prescription drugs KW - prescription KW - prescriptions KW - drug KW - drugs KW - drug use KW - platform X KW - Twitter KW - tweet KW - tweets KW - latent Dirichlet allocation KW - machine-driven KW - natural language processing KW - NLP KW - brand name KW - logistic regression KW - machine learning KW - health informatics N2 - Background: Data from the social media platform X (formerly Twitter) can provide insights into the types of language that are used when discussing drug use. In past research using latent Dirichlet allocation (LDA), we found that tweets containing ?street names? of prescription drugs were difficult to classify due to the similarity to other colloquialisms and lack of clarity over how the terms were used. Conversely, ?brand name? references were more amenable to machine-driven categorization. Objective: This study sought to use next-generation techniques (beyond LDA) from natural language processing to reprocess X data and automatically cluster groups of tweets into topics to differentiate between street- and brand-name data sets. We also aimed to analyze the differences in emotional valence between the 2 data sets to study the relationship between engagement on social media and sentiment. Methods: We used the Twitter application programming interface to collect tweets that contained the street and brand name of a prescription drug within the tweet. Using BERTopic in combination with Uniform Manifold Approximation and Projection and k-means, we generated topics for the street-name corpus (n=170,618) and brand-name corpus (n=245,145). Valence Aware Dictionary and Sentiment Reasoner (VADER) scores were used to classify whether tweets within the topics had positive, negative, or neutral sentiments. Two different logistic regression classifiers were used to predict the sentiment label within each corpus. The first model used a tweet?s engagement metrics and topic ID to predict the label, while the second model used those features in addition to the top 5000 tweets with the largest term-frequency?inverse document frequency score. Results: Using BERTopic, we identified 40 topics for the street-name data set and 5 topics for the brand-name data set, which we generalized into 8 and 5 topics of discussion, respectively. Four of the general themes of discussion in the brand-name corpus referenced drug use, while 2 themes of discussion in the street-name corpus referenced drug use. From the VADER scores, we found that both corpora were inclined toward positive sentiment. Adding the vectorized tweet text increased the accuracy of our models by around 40% compared with the models that did not incorporate the tweet text in both corpora. Conclusions: BERTopic was able to classify tweets well. As with LDA, the discussion using brand names was more similar between tweets than the discussion using street names. VADER scores could only be logically applied to the brand-name corpus because of the high prevalence of non?drug-related topics in the street-name data. Brand-name tweets either discussed drugs positively or negatively, with few posts having a neutral emotionality. From our machine learning models, engagement alone was not enough to predict the sentiment label; the added context from the tweets was needed to understand the emotionality of a tweet. UR - https://www.jmir.org/2024/1/e57885 UR - http://dx.doi.org/10.2196/57885 UR - http://www.ncbi.nlm.nih.gov/pubmed/39178036 ID - info:doi/10.2196/57885 ER - TY - JOUR AU - AbouWarda, Horeya AU - Dolata, Mateusz AU - Schwabe, Gerhard PY - 2024/8/19 TI - How Does an Online Mental Health Community on Twitter Empower Diverse Population Levels and Groups? A Qualitative Analysis of #BipolarClub JO - J Med Internet Res SP - e55965 VL - 26 KW - social media KW - Twitter KW - online mental health community KW - OMHC KW - empowerment processes KW - diverse population levels and groups KW - World Health Organization KW - WHO KW - Integrated People-Centred Health Services KW - IPCHS framework (Strategy 1) N2 - Background: Social media, including online health communities (OHCs), are widely used among both healthy people and those with health conditions. Platforms like Twitter (recently renamed X) have become powerful tools for online mental health communities (OMHCs), enabling users to exchange information, express feelings, and socialize. Recognized as empowering processes, these activities could empower mental health consumers, their families and friends, and society. However, it remains unclear how OMHCs empower diverse population levels and groups. Objective: This study aimed to develop an understanding of how empowerment processes are conducted within OMHCs on Twitter by identifying members who shape these communities, detecting the types of empowerment processes aligned with the population levels and groups outlined in Strategy 1 of the Integrated People-Centred Health Services (IPCHS) framework by the World Health Organization (WHO), and clarifying members? involvement tendencies in these processes. Methods: We conducted our analysis on a Twitter OMHC called #bipolarclub. We captured 2068 original tweets using its hashtag #bipolarclub between December 19, 2022, and January 15, 2023. After screening, 547 eligible tweets by 182 authors were analyzed. Using qualitative content analysis, community members were classified by examining the 182 authors? Twitter profiles, and empowerment processes were identified by analyzing the 547 tweets and categorized according to the WHO?s Strategy 1. Members? tendencies of involvement were examined through their contributions to the identified processes. Results: The analysis of #bipolarclub community members unveiled 5 main classifications among the 182 members, with the majority classified as individual members (n=138, 75.8%), followed by health care?related members (n=39, 21.4%). All members declared that they experience mental health conditions, including mental health and general practitioner members, who used the community as consumers and peers rather than for professional services. The analysis of 547 tweets for empowerment processes revealed 3 categories: individual-level processes (6 processes and 2 subprocesses), informal carer processes (1 process for families and 1 process for friends), and society-level processes (1 process and 2 subprocesses). The analysis also demonstrated distinct involvement tendencies among members, influenced by their identities, with individual members engaging in self-expression and family awareness support and health care?related members supporting societal awareness. Conclusions: The examination of the #bipolarclub community highlights the capability of Twitter-based OMHCs to empower mental health consumers (including those from underserved and marginalized populations), their families and friends, and society, aligning with the WHO?s empowerment agenda. This underscores the potential benefits of leveraging Twitter for such objectives. This pioneering study is the very first to analyze how a single OMHC can empower diverse populations, offering various health care stakeholders valuable guidance and aiding them in developing consumer-oriented empowerment programs using such OMHCs. We also propose a structured framework that classifies empowerment processes in OMHCs, inspired by the WHO?s Strategy 1 (IPCHS framework). UR - https://www.jmir.org/2024/1/e55965 UR - http://dx.doi.org/10.2196/55965 UR - http://www.ncbi.nlm.nih.gov/pubmed/39158945 ID - info:doi/10.2196/55965 ER - TY - JOUR AU - McCall, C. Hugh AU - Hadjistavropoulos, D. Heather PY - 2024/8/14 TI - Impact of an Online Discussion Forum on Self-Guided Internet-Delivered Cognitive Behavioral Therapy for Public Safety Personnel: Randomized Trial JO - J Med Internet Res SP - e59699 VL - 26 KW - internet KW - cognitive behavioral therapy KW - forum KW - persuasive design KW - generalized anxiety disorder KW - major depressive disorder KW - posttraumatic stress disorder KW - public safety personnel N2 - Background: Internet-delivered cognitive behavioral therapy (ICBT) is an effective and accessible treatment for various mental health concerns. ICBT has shown promising treatment outcomes among public safety personnel (PSP), who experience high rates of mental health problems and face barriers to accessing other mental health services. Client engagement and clinical outcomes are better in ICBT with therapist guidance, but ICBT is easier to implement on a large scale when it is self-guided. Therefore, it is important to identify strategies to improve outcomes and engagement in self-guided ICBT and other self-guided digital mental health interventions. One such strategy is the use of online discussion forums to provide ICBT clients with opportunities for mutual social support. Self-guided interventions accompanied by online discussion forums have shown excellent treatment outcomes, but there is a need for research experimentally testing the impact of online discussion forums in ICBT. Objective: We aimed to evaluate a transdiagnostic, self-guided ICBT intervention tailored specifically for PSP (which had not previously been assessed), assess the impact of adding a therapist-moderated online discussion forum on outcomes, and analyze participants? feedback to inform future research and implementation efforts. Methods: In this randomized trial, we randomly assigned participating PSP (N=107) to access an 8-week transdiagnostic, self-guided ICBT course with or without a built-in online discussion forum. Enrollment and participation were entirely web-based. We assessed changes in depression, anxiety, and posttraumatic stress as well as several secondary outcome measures (eg, treatment engagement and satisfaction) using questionnaires at the pre-enrollment, 8-week postenrollment, and 20-week postenrollment time points. Mixed methods analyses included multilevel modeling and qualitative content analysis. Results: Participants engaged minimally with the forum, creating 9 posts. There were no differences in treatment outcomes between participants who were randomly assigned to access the forum (56/107, 52.3%) and those who were not (51/107, 47.7%). Across conditions, participants who reported clinically significant symptoms during enrollment showed large and statistically significant reductions in symptoms (P<.05 and d>0.97 in all cases). Participants also showed good treatment engagement and satisfaction, with 43% (46/107) of participants fully completing the intervention during the course of the study and 96% (79/82) indicating that the intervention was worth their time. Conclusions: Previous research has shown excellent clinical outcomes for self-guided ICBT accompanied by discussion forums and good engagement with those forums. Although clinical outcomes in our study were excellent across conditions, engagement with the forum was poor, in contrast to previous research. We discuss several possible interpretations of this finding (eg, related to the population under study or the design of the forum). Our findings highlight a need for more research evaluating the impact of online discussion forums and other strategies for improving outcomes and engagement in self-guided ICBT and other digital mental health interventions. Trial Registration: ClinicalTrials.gov NCT05145582; https://clinicaltrials.gov/study/NCT05145582 UR - https://www.jmir.org/2024/1/e59699 UR - http://dx.doi.org/10.2196/59699 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59699 ER - TY - JOUR AU - Snyder, Jeremy AU - Zenone, Marco AU - Grewal, Ashmita AU - Caulfield, Timothy PY - 2024/8/14 TI - Crowdfunding for Complementary and Alternative Cancer Treatments in Tijuana, Mexico: Content Analysis JO - JMIR Cancer SP - e52018 VL - 10 KW - cancer KW - crowdfunding KW - Tijuana KW - CAM KW - patient KW - patients KW - insurance KW - crowdfunding platforms KW - GoFundMe KW - GiveSendGo KW - cancer clinic KW - Mexico KW - campaigns KW - cancer treatment KW - medical intervention KW - CAM cancer treatments KW - misinformation KW - alternate care KW - women's health KW - internet research KW - international medical tourism KW - alternative cancer therapy KW - financial toxicity N2 - Background: Complementary and alternative (CAM) cancer treatment is often expensive and not covered by insurance. As a result, many people turn to crowdfunding to access this treatment. Objective: The aim of this study is to identify the rationales of patients with cancer seeking CAM treatment abroad by looking specifically at crowdfunding campaigns to support CAM cancer treatment in Tijuana, Mexico. Methods: We scraped the GoFundMe.com and GiveSendGo.com crowdfunding platforms for campaigns referencing CAM cancer clinics in Tijuana, initiated between January 1, 2022, and February 28, 2023. The authors created a coding framework to identify rationales for seeking CAM treatment in Tijuana. To supplement campaign metadata, we coded the beneficiary?s cancer stage, type, age, specific treatment sought, whether the beneficiary died, gender, and race. Results: Patients sought CAM cancer treatment in Tijuana because the (1) treatment offers the greatest efficacy (29.9%); (2) treatment offered domestically was not curative (23.2%); (3) the clinic treats the whole person, and addresses the spiritual dimension of the person (20.1%); (4) treatments are nontoxic, natural, or less invasive (18.2%); and (5) clinic offers the newest technology (8.5%). Campaigns raised US $5,275,268.37 and most campaign beneficiaries were women (69.7%) or White individuals (71.1%). Conclusions: These campaigns spread problematic misinformation about the likely efficacy of CAM treatments, funnel money and endorsements to CAM clinics in Tijuana, and leave many campaigners short of the money needed to pay for CAM treatments while costing beneficiaries and their loved one?s time, privacy, and dignity. This study affirms that Tijuana, Mexico, is a very popular destination for CAM cancer treatment. UR - https://cancer.jmir.org/2024/1/e52018 UR - http://dx.doi.org/10.2196/52018 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/52018 ER - TY - JOUR AU - Melnikov, Semyon AU - Klein, Stav AU - Shahar, Moni AU - Guy, David PY - 2024/8/13 TI - Using Topic Modeling to Understand Patients? and Caregivers? Perspectives About Left Ventricular Assist Device: Thematic Analysis JO - J Med Internet Res SP - e50009 VL - 26 KW - left ventricular assist device KW - LVAD KW - topic modeling KW - health care forum KW - heart disease KW - cardiovascular condition KW - medical devices KW - devices for heart KW - latent Dirichlet allocation KW - cardiovascular KW - device KW - visualization tool KW - tool KW - heart KW - caregiver KW - monitoring KW - management KW - care KW - users KW - communication KW - heart failure N2 - Background: Heart failure (HF) is a significant global clinical and public health challenge, impacting 64.3 million individuals worldwide. To address the scarcity of donor organs, left ventricular assist device (LVAD) implantation has become a crucial intervention for managing end-stage HF, serving as a bridge to heart transplantation or as a destination therapy. Web-based health forums, such as MyLVAD.com, play a vital role as trusted sources of information for individuals with HF symptoms and their caregivers. Objective: We aim to uncover the latent topics within the posts shared by users on the MyLVAD.com website. Methods: Using the latent Dirichlet allocation algorithm and a visualization tool, our objective was to uncover latent topics within the posts shared on the MyLVAD.com website. Through the application of topic modeling techniques, we analyzed 459 posts authored by recipients of LVAD and their family members from 2015 to 2023. Results: This study unveiled 5 prominent themes of concern among patients with LVAD and their family members. These themes included family support (39.5% weight value), encompassing subthemes such as family caregiving roles and emotional or practical support; clothing (23.9% weight value), with subthemes related to comfort, normalcy, and functionality; infection (18.2% weight value), covering driveline infections, prevention, and care; power (12% weight value), involving challenges associated with power dependency; and self-care maintenance, monitoring, and management (6.3% weight value), which included subthemes such as blood tests, monitoring, alarms, and device management. Conclusions: These findings contribute to a better understanding of the experiences and needs of patients implanted with LVAD, providing valuable insights for health care professionals to offer tailored support and care. By using latent Dirichlet allocation to analyze posts from the MyLVAD.com forum, this study sheds light on key topics discussed by users, facilitating improved patient care and enhanced patient-provider communication. UR - https://www.jmir.org/2024/1/e50009 UR - http://dx.doi.org/10.2196/50009 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/50009 ER - TY - JOUR AU - Yin, Dean-Chen Jason PY - 2024/8/9 TI - Vaccine Hesitancy in Taiwan: Temporal, Multilayer Network Study of Echo Chambers Shaped by Influential Users JO - Online J Public Health Inform SP - e55104 VL - 16 KW - network analysis KW - infodemiology KW - vaccine hesitancy KW - Taiwan KW - multiplex network KW - echo chambers KW - influential users KW - information dissemination KW - health communication KW - Taiwanese data set KW - multilayer network model KW - vaccine hesitant KW - antivaccination KW - infoveillance KW - disease surveillance KW - public health N2 - Background: Vaccine hesitancy is a growing global health threat that is increasingly studied through the monitoring and analysis of social media platforms. One understudied area is the impact of echo chambers and influential users on disseminating vaccine information in social networks. Assessing the temporal development of echo chambers and the influence of key users on their growth provides valuable insights into effective communication strategies to prevent increases in vaccine hesitancy. This also aligns with the World Health Organization?s (WHO) infodemiology research agenda, which aims to propose new methods for social listening. Objective: Using data from a Taiwanese forum, this study aims to examine how engagement patterns of influential users, both within and across different COVID-19 stances, contribute to the formation of echo chambers over time. Methods: Data for this study come from a Taiwanese forum called PTT. All vaccine-related posts on the ?Gossiping? subforum were scraped from January 2021 to December 2022 using the keyword ?vaccine.? A multilayer network model was constructed to assess the existence of echo chambers. Each layer represents either provaccination, vaccine hesitant, or antivaccination posts based on specific criteria. Layer-level metrics, such as average diversity and Spearman rank correlations, were used to measure chambering. To understand the behavior of influential users?or key nodes?in the network, the activity of high-diversity and hardliner nodes was analyzed. Results: Overall, the provaccination and antivaccination layers are strongly polarized. This trend is temporal and becomes more apparent after November 2021. Diverse nodes primarily participate in discussions related to provaccination topics, both receiving comments and contributing to them. Interactions with the antivaccination layer are comparatively minimal, likely due to its smaller size, suggesting that the forum is a ?healthy community.? Overall, diverse nodes exhibit cross-cutting engagement. By contrast, hardliners in the vaccine hesitant and antivaccination layers are more active in commenting within their own communities. This trend is temporal, showing an increase during the Omicron outbreak. Hardliner activity potentially reinforces their stances over time. Thus, there are opposing forces of chambering and cross-cutting. Conclusions: Efforts should be made to moderate hardliner and influential nodes in the antivaccination layer and to support provaccination users engaged in cross-cutting exchanges. There are several limitations to this study. One is the bias of the platform used, and another is the lack of a comprehensive definition of ?influence.? To address these issues, comparative studies across different platforms can be conducted, and various metrics of influence should be explored. Additionally, examining the impact of influential users on network structure and chambering through network simulations and regression analysis provides more robust insights. The study also lacks an explanation for the reasons behind chambering trends. Conducting content analysis can help to understand the nature of engagement and inform interventions to address echo chambers. These approaches align with and further the WHO infodemic research agenda. UR - https://ojphi.jmir.org/2024/1/e55104 UR - http://dx.doi.org/10.2196/55104 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/55104 ER - TY - JOUR AU - Yan, Yifei AU - Li, Jun AU - Liu, Xingyun AU - Li, Qing AU - Yu, Xiaonan Nancy PY - 2024/8/8 TI - Identifying Reddit Users at a High Risk of Suicide and Their Linguistic Features During the COVID-19 Pandemic: Growth-Based Trajectory Model JO - J Med Internet Res SP - e48907 VL - 26 KW - COVID-19 pandemic KW - Reddit KW - suicide risk KW - trajectory N2 - Background: Suicide has emerged as a critical public health concern during the COVID-19 pandemic. With social distancing measures in place, social media has become a significant platform for individuals expressing suicidal thoughts and behaviors. However, existing studies on suicide using social media data often overlook the diversity among users and the temporal dynamics of suicide risk. Objective: By examining the variations in post volume trajectories among users on the r/SuicideWatch subreddit during the COVID-19 pandemic, this study aims to investigate the heterogeneous patterns of change in suicide risk to help identify social media users at high risk of suicide. We also characterized their linguistic features before and during the pandemic. Methods: We collected and analyzed post data every 6 months from March 2019 to August 2022 for users on the r/SuicideWatch subreddit (N=6163). A growth-based trajectory model was then used to investigate the trajectories of post volume to identify patterns of change in suicide risk during the pandemic. Trends in linguistic features within posts were also charted and compared, and linguistic markers were identified across the trajectory groups using regression analysis. Results: We identified 2 distinct trajectories of post volume among r/SuicideWatch subreddit users. A small proportion of users (744/6163, 12.07%) was labeled as having a high risk of suicide, showing a sharp and lasting increase in post volume during the pandemic. By contrast, most users (5419/6163, 87.93%) were categorized as being at low risk of suicide, with a consistently low and mild increase in post volume during the pandemic. In terms of the frequency of most linguistic features, both groups showed increases at the initial stage of the pandemic. Subsequently, the rising trend continued in the high-risk group before declining, while the low-risk group showed an immediate decrease. One year after the pandemic outbreak, the 2 groups exhibited differences in their use of words related to the categories of personal pronouns; affective, social, cognitive, and biological processes; drives; relativity; time orientations; and personal concerns. In particular, the high-risk group was discriminant in using words related to anger (odds ratio [OR] 3.23, P<.001), sadness (OR 3.23, P<.001), health (OR 2.56, P=.005), achievement (OR 1.67, P=.049), motion (OR 4.17, P<.001), future focus (OR 2.86, P<.001), and death (OR 4.35, P<.001) during this stage. Conclusions: Based on the 2 identified trajectories of post volume during the pandemic, this study divided users on the r/SuicideWatch subreddit into suicide high- and low-risk groups. Our findings indicated heterogeneous patterns of change in suicide risk in response to the pandemic. The high-risk group also demonstrated distinct linguistic features. We recommend conducting real-time surveillance of suicide risk using social media data during future public health crises to provide timely support to individuals at potentially high risk of suicide. UR - https://www.jmir.org/2024/1/e48907 UR - http://dx.doi.org/10.2196/48907 UR - http://www.ncbi.nlm.nih.gov/pubmed/39115925 ID - info:doi/10.2196/48907 ER - TY - JOUR AU - Varaona, Andrea AU - Alvarez-Mon, Angel Miguel AU - Serrano-Garcia, Irene AU - Díaz-Marsá, Marina AU - Looi, L. Jeffrey C. AU - Molina-Ruiz, M. Rosa PY - 2024/8/1 TI - Exploring the Relationship Between Instagram Use and Self-Criticism, Self-Compassion, and Body Dissatisfaction in the Spanish Population: Observational Study JO - J Med Internet Res SP - e51957 VL - 26 KW - Instagram KW - self-compassion KW - self-esteem KW - self-criticism KW - self-worth KW - body dissatisfaction KW - dissatisfaction KW - satisfaction KW - appearance KW - psychological KW - social media KW - body KW - mental health KW - mental wellbeing KW - Spain KW - Spanish KW - Hispanic KW - depression KW - depressive KW - usage KW - correlation KW - association N2 - Background: The widespread use of online social networks, particularly among the younger demographic, has catalyzed a growing interest in exploring their influence on users? psychological well-being. Instagram (Meta), a visually oriented platform, has garnered significant attention. Prior research has consistently indicated that Instagram usage correlates with heightened levels of perfectionism, body dissatisfaction, and diminished self-esteem. Perfectionism is closely linked to self-criticism, which entails an intense self-scrutiny and is often associated with various psychopathologies. Conversely, self-compassion has been linked to reduced levels of perfectionism and stress, while fostering greater positive affect and overall life satisfaction. Objective: This study investigates the relationship between Instagram usage (time of use and content exposure) and users? levels of self-compassion, self-criticism, and body dissatisfaction. Methods: This study comprised 1051 adult participants aged between 18 and 50 years, either native to Spain or residing in the country for at least a decade. Each participant completed a tailored questionnaire on Instagram usage, along with abbreviated versions of the Self-Compassion Scale, the Body Shape Questionnaire, and the Depressive Experiences Questionnaire, spanning from January 23 to February 25, 2022. Results: A positive correlation was observed between daily Instagram usage and self-criticism scores. Participants of all age groups who spent over 3 hours per day on Instagram exhibited higher self-criticism scores than users who spent less than 1 hour or between 1 and 3 hours per day. Contrary to previous findings, no significant relationship was detected between Instagram usage time and levels of self-compassion or body dissatisfaction. Furthermore, content centered around physical appearance exhibited a positive correlation with self-criticism and body dissatisfaction scores. Among younger participants (aged 18-35 years), those who primarily viewed beauty or fashion content reported higher self-criticism scores than those consuming science-related content. However, this association was not significant for participants aged 35-50 years. Conversely, individuals who predominantly engaged with sports or fitness or family or friends content exhibited higher levels of body dissatisfaction than those focusing on science-related content. No significant associations were observed between self-compassion scores and daily Instagram usage or most-viewed content categories. Conclusions: The findings of this study underscore the considerable impact of Instagram usage on self-criticism and body dissatisfaction?2 variables known to influence users? psychological well-being and be associated with various symptoms and psychological disorders. UR - https://www.jmir.org/2024/1/e51957 UR - http://dx.doi.org/10.2196/51957 UR - http://www.ncbi.nlm.nih.gov/pubmed/39088263 ID - info:doi/10.2196/51957 ER - TY - JOUR AU - Jiang, Hongxun AU - Mi, Ziyue AU - Xu, Wei PY - 2024/7/30 TI - Online Medical Consultation Service?Oriented Recommendations: Systematic Review JO - J Med Internet Res SP - e46073 VL - 26 KW - online health community KW - online medical consultation KW - personalized recommendations KW - 2-sided matching KW - load balancing N2 - Background: Online health communities have given rise to a new e-service known as online medical consultations (OMCs), enabling remote interactions between physicians and patients. To address challenges, such as patient information overload and uneven distribution of physician visits, online health communities should develop OMC-oriented recommenders. Objective: We aimed to comprehensively investigate what paradigms lead to the success of OMC-oriented recommendations. Methods: A literature search was conducted through e-databases, including PubMed, ACM Digital Library, Springer, and ScienceDirect, from January 2011 to December 2023. This review included all papers directly and indirectly related to the topic of health care?related recommendations for online services. Results: The search identified 611 articles, of which 26 (4.3%) met the inclusion criteria. Despite the growing academic interest in OMC recommendations, there remains a lack of consensus among researchers on the definition of e-service?oriented recommenders. The discussion highlighted 3 key factors influencing recommender success: features, algorithms, and metrics. It advocated for moving beyond traditional e-commerce?oriented recommenders to establish an innovative theoretical framework for e-service?oriented recommenders and addresses critical technical issues regarding 2-sided personalized recommendations. Conclusions: This review underscores the essence of e-services, particularly in knowledge- and labor-intensive domains such as OMCs, where patients seek interpretable recommendations due to their lack of domain knowledge and physicians must balance their energy levels to avoid overworking. Our study?s findings shed light on the importance of customizing e-service?oriented personalized recommendations to meet the distinct expectations of 2-sided users considering their cognitive abilities, decision-making perspectives, and preferences. To achieve this, a paradigm shift is essential to develop unique attributes and explore distinct content tailored for both parties involved. UR - https://www.jmir.org/2024/1/e46073 UR - http://dx.doi.org/10.2196/46073 UR - http://www.ncbi.nlm.nih.gov/pubmed/38777810 ID - info:doi/10.2196/46073 ER - TY - JOUR AU - Sehgal, R. Neil K. AU - Rader, Benjamin AU - Brownstein, S. John PY - 2024/7/29 TI - Examining the Role of Physician Characteristics in Web-Based Verified Primary Care Physician Reviews: Observational Study JO - J Med Internet Res SP - e51672 VL - 26 KW - patient review websites KW - patient online review KW - telemedicine KW - internet KW - online review KW - online reviews KW - rating KW - physician review KW - physician reviews KW - doctor review KW - doctor reviews N2 - Background: Doctor review websites have become increasingly popular as a source of information for patients looking to select a primary care provider. Zocdoc is one such platform that allows patients to not only rate and review their experiences with doctors but also directly schedule appointments. This study examines how several physician characteristics including gender, age, race, languages spoken in a physician?s office, education, and facial attractiveness impact the average numerical rating of primary care doctors on Zocdoc. Objective: The aim of this study was to investigate the association between physician characteristics and patient satisfaction ratings on Zocdoc. Methods: A data set of 1455 primary care doctor profiles across 30 cities was scraped from Zocdoc. The profiles contained information on the physician?s gender, education, and languages spoken in their office. Age, facial attractiveness, and race were imputed from profile pictures using commercial facial analysis software. Each doctor profile listed an average overall satisfaction rating, bedside manner rating, and wait time rating from verified patients. Descriptive statistics, the Wilcoxon rank sum test, and multivariate logistic regression were used to analyze the data. Results: The average overall rating on Zocdoc was highly positive, with older age, lower facial attractiveness, foreign degrees, allopathic degrees, and speaking more languages negatively associated with the average rating. However, the effect sizes of these factors were relatively small. For example, graduates of Latin American medical schools had a mean overall rating of 4.63 compared to a 4.77 rating for US graduates (P<.001), a difference roughly equivalent to a 2.8% decrease in appointments. On multivariate analysis, being Asian and having a doctor of osteopathic medicine degree were positively associated with higher overall ratings, while attending a South Asian medical school and speaking more European and Middle Eastern languages in the office were negatively associated with higher overall ratings. Conclusions: Overall, the findings suggest that age, facial attractiveness, education, and multilingualism do have some impact on web-based doctor reviews, but the numerical effect is small. Notably, bias may play out in many forms. For example, a physician's appearance or accent may impact a patient's trust, confidence, or satisfaction with their physician, which could in turn influence their take-up of preventative services and lead to either better or worse health outcomes. The study highlights the need for further research in how physician characteristics influence patient ratings of care. UR - https://www.jmir.org/2024/1/e51672 UR - http://dx.doi.org/10.2196/51672 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/51672 ER - TY - JOUR AU - Kelsall, Clancy Nora AU - Gimbrone, Catherine AU - Olfson, Mark AU - Gould, S. Madelyn AU - Shaman, Jeffrey AU - Keyes, Katherine PY - 2024/7/26 TI - Association Between Prosuicide Website Searches Through Google and Suicide Death in the United States From 2010 to 2021: Lagged Time-Series Analysis JO - J Med Internet Res SP - e53404 VL - 26 KW - pro-suicide forum KW - suicide KW - google search KW - social media KW - online forum KW - internet search KW - death KW - United States KW - suicide death KW - forum KW - analysis KW - association KW - poisoning KW - suffocation N2 - Background:  The rate of suicide death has been increasing, making understanding risk factors of growing importance. While exposure to explicit suicide-related media, such as description of means in news reports or sensationalized fictional portrayal, is known to increase population suicide rates, it is not known whether prosuicide website forums, which often promote or facilitate information about fatal suicide means, are related to change in suicide deaths overall or by specific means. Objective:  This study aimed to estimate the association of the frequency of Google searches of known prosuicide web forums and content with death by suicide over time in the United States, by age, sex, and means of death. Methods:  National monthly Google search data for names of common prosuicide websites between January 2010 and December 2021 were extracted from Google Health Trends API (application programming interface). Suicide deaths were identified using the CDC (Centers for Disease Control and Prevention) National Vital Statistics System (NVSS), and 3 primary means of death were identified (poisoning, suffocation, and firearm). Distributed lag nonlinear models (DLNMs) were then used to estimate the lagged association between the number of Google searches on suicide mortality, stratified by age, sex, and means, and adjusted for month. Sensitivity analyses, including using autoregressive integrated moving average (ARIMA) modeling approaches, were also conducted. Results:  Months in the United States in which search rates for prosuicide websites increased had more documented deaths by intentional poisoning and suffocation among both adolescents and adults. For example, the risk of poisoning suicide among youth and young adults (age 10-24 years) was 1.79 (95% CI 1.06-3.03) times higher in months with 22 searches per 10 million as compared to 0 searches. The risk of poisoning suicide among adults aged 25-64 was 1.10 (95% CI 1.03-1.16) times higher 1 month after searches reached 9 per 10 million compared with 0 searches. We also observed that increased search rates were associated with fewer youth suicide deaths by firearms with a 3-month time lag for adolescents. These models were robust to sensitivity tests. Conclusions:  Although more analysis is needed, the findings are suggestive of an association between increased prosuicide website access and increased suicide deaths, specifically deaths by poisoning and suffocation. These findings emphasize the need to further investigate sites containing potentially dangerous information and their associations with deaths by suicide, as they may affect vulnerable individuals. UR - https://www.jmir.org/2024/1/e53404 UR - http://dx.doi.org/10.2196/53404 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/53404 ER - TY - JOUR AU - Bravata, Dena AU - Russell, Daniel AU - Fellows, Annette AU - Goldman, Ron AU - Pace, Elizabeth PY - 2024/7/24 TI - Digitally Enabled Peer Support and Social Health Platform for Vulnerable Adults With Loneliness and Symptomatic Mental Illness: Cohort Analysis JO - JMIR Form Res SP - e58263 VL - 8 KW - peer support KW - social isolation KW - loneliness KW - depression KW - depressive KW - mental health KW - anxiety KW - quality of life KW - isolation KW - isolated KW - online support KW - digital health KW - vulnerable KW - race KW - racial ethnic KW - ethnicity KW - gender KW - socioeconomic KW - demographic UR - https://formative.jmir.org/2024/1/e58263 UR - http://dx.doi.org/10.2196/58263 UR - http://www.ncbi.nlm.nih.gov/pubmed/38941568 ID - info:doi/10.2196/58263 ER - TY - JOUR AU - Jalali, Alireza AU - Nyman, Jacline AU - Loeffelholz, Ouida AU - Courtney, Chantelle PY - 2024/7/22 TI - Data-Driven Fundraising: Strategic Plan for Medical Education JO - JMIR Med Educ SP - e53624 VL - 10 KW - fundraising KW - philanthropy KW - crowdfunding KW - funding KW - charity KW - higher education KW - university KW - medical education KW - educators KW - advancement KW - data analytics KW - ethics KW - ethical KW - education KW - medical school KW - school KW - support KW - financial KW - community UR - https://mededu.jmir.org/2024/1/e53624 UR - http://dx.doi.org/10.2196/53624 ID - info:doi/10.2196/53624 ER - TY - JOUR AU - Wang, Yan AU - DeVito Dabbs, Annette AU - Thomas, Hagan Teresa AU - Campbell, Grace AU - Donovan, Heidi PY - 2024/7/22 TI - Measuring Engagement in Provider-Guided Digital Health Interventions With a Conceptual and Analytical Framework Using Nurse WRITE as an Exemplar: Exploratory Study With an Iterative Approach JO - JMIR Form Res SP - e57529 VL - 8 KW - engagement KW - digital health intervention KW - framework KW - symptom management KW - eHealth KW - gynecological cancer N2 - Background: Limited guidance exists for analyzing participant engagement in provider-guided digital health interventions (DHIs). System usage is commonly assessed, with acknowledged limitations in measuring socio-affective and cognitive aspects of engagement. Nurse WRITE, an 8-week web-based nurse-guided DHI for managing symptoms among women with recurrent ovarian cancer, offers an opportunity to develop a framework for assessing multidimensional engagement. Objective: This study aims to develop a conceptual and analytic framework to measure socio-affective, cognitive, and behavioral engagement with provider-guided DHIs. We then illustrate the framework?s ability to describe and categorize engagement using Nurse WRITE as an example. Methods: A sample of 68 participants from Nurse WRITE who posted on the message boards were included. We adapted a prior framework for conceptualizing and operationalizing engagement across 3 dimensions and finalized a set of 6 distinct measures. Using patients' posts, we created 2 socio-affective engagement measures?total count of socio-affective engagement classes (eg, sharing personal experience) and total word count?and 2 cognitive engagement measures?total count of cognitive engagement classes (eg, asking information-seeking questions) and average question completion percentage. Additionally, we devised behavioral engagement measures using website data?the total count of symptom care plans and plan reviews. k-Means clustering categorized the participants into distinct groups based on levels of engagement across 3 dimensions. Descriptive statistics and narratives were used to describe engagement in 3 dimensions. Results: On average, participants displayed socio-affective engagement 34.7 times, writing 14,851 words. They showed cognitive engagement 19.4 times, with an average of 78.3% completion of nurses' inquiries. Participants also submitted an average of 1.6 symptom care plans and 0.7 plan reviews. Participants were clustered into high (n=13), moderate (n=17), and low engagers (n=38) based on the 6 measures. High engagers wrote a median of 36,956 (IQR 26,199-46,265) words. They demonstrated socio-affective engagement approximately 81 times and cognitive engagement around 46 times, approximately 6 times that of the low engagers and twice that of the moderate engagers. High engagers had a median of 91.7% (IQR 82.2%-93.7%) completion of the nurses? queries, whereas moderate engagers had 86.4% (IQR 80%-96.4%), and low engagers had 68.3% (IQR 60.1%-79.6%). High engagers completed a median of 3 symptom care plans and 2 reviews, while moderate engagers completed 2 plans and 1 review. Low engagers completed a median of 1 plan with no reviews. Conclusions: This study developed and reported an engagement framework to guide behavioral intervention scientists in understanding and analyzing participants? engagement with provider-guided DHIs. Significant variations in engagement levels across 3 dimensions highlight the importance of measuring engagement with provider-guided DHIs in socio-affective, cognitive, and behavioral dimensions. Future studies should validate the framework with other DHIs, explore the influence of patient and provider factors on engagement, and investigate how engagement influences intervention efficacy. UR - https://formative.jmir.org/2024/1/e57529 UR - http://dx.doi.org/10.2196/57529 UR - http://www.ncbi.nlm.nih.gov/pubmed/39037757 ID - info:doi/10.2196/57529 ER - TY - JOUR AU - Leung, W. Yvonne AU - Wouterloot, Elise AU - Adikari, Achini AU - Hong, Jinny AU - Asokan, Veenaajaa AU - Duan, Lauren AU - Lam, Claire AU - Kim, Carlina AU - Chan, P. Kai AU - De Silva, Daswin AU - Trachtenberg, Lianne AU - Rennie, Heather AU - Wong, Jiahui AU - Esplen, Jane Mary PY - 2024/7/22 TI - Artificial Intelligence?Based Co-Facilitator (AICF) for Detecting and Monitoring Group Cohesion Outcomes in Web-Based Cancer Support Groups: Single-Arm Trial Study JO - JMIR Cancer SP - e43070 VL - 10 KW - group cohesion KW - LIWC KW - online support group KW - natural language processing KW - NLP KW - emotion analysis KW - machine learning KW - sentiment analysis KW - emotion detection KW - integrating human knowledge KW - emotion lining KW - cancer KW - oncology KW - support group KW - artificial intelligence KW - AI KW - therapy KW - online therapist KW - emotion KW - affect KW - speech tagging KW - speech tag KW - topic modeling KW - named entity recognition KW - spoken language processing KW - focus group KW - corpus KW - language KW - linguistic N2 - Background: Commonly offered as supportive care, therapist-led online support groups (OSGs) are a cost-effective way to provide support to individuals affected by cancer. One important indicator of a successful OSG session is group cohesion; however, monitoring group cohesion can be challenging due to the lack of nonverbal cues and in-person interactions in text-based OSGs. The Artificial Intelligence?based Co-Facilitator (AICF) was designed to contextually identify therapeutic outcomes from conversations and produce real-time analytics. Objective: The aim of this study was to develop a method to train and evaluate AICF?s capacity to monitor group cohesion. Methods: AICF used a text classification approach to extract the mentions of group cohesion within conversations. A sample of data was annotated by human scorers, which was used as the training data to build the classification model. The annotations were further supported by finding contextually similar group cohesion expressions using word embedding models as well. AICF performance was also compared against the natural language processing software Linguistic Inquiry Word Count (LIWC). Results: AICF was trained on 80,000 messages obtained from Cancer Chat Canada. We tested AICF on 34,048 messages. Human experts scored 6797 (20%) of the messages to evaluate the ability of AICF to classify group cohesion. Results showed that machine learning algorithms combined with human input could detect group cohesion, a clinically meaningful indicator of effective OSGs. After retraining with human input, AICF reached an F1-score of 0.82. AICF performed slightly better at identifying group cohesion compared to LIWC. Conclusions: AICF has the potential to assist therapists by detecting discord in the group amenable to real-time intervention. Overall, AICF presents a unique opportunity to strengthen patient-centered care in web-based settings by attending to individual needs. International Registered Report Identifier (IRRID): RR2-10.2196/21453 UR - https://cancer.jmir.org/2024/1/e43070 UR - http://dx.doi.org/10.2196/43070 UR - http://www.ncbi.nlm.nih.gov/pubmed/39037754 ID - info:doi/10.2196/43070 ER - TY - JOUR AU - Storman, Dawid AU - Jemio?o, Pawe? AU - Sawiec, Zuzanna AU - Swierz, Jan Mateusz AU - Antonowicz, Ewa AU - Bala, M. Malgorzata AU - Prokop-Dorner, Anna PY - 2024/7/12 TI - Needs Expressed in Peer-to-Peer Web-Based Interactions Among People With Depression and Anxiety Disorders Hospitalized in a Mental Health Facility: Mixed Methods Study JO - J Med Internet Res SP - e51506 VL - 26 KW - anxiety disorders KW - depression KW - peer-to-peer web-based interactions KW - needs KW - psychiatric hospitalization N2 - Background: Hospitalization in psychiatric wards is a necessary step for many individuals experiencing severe mental health issues. However, being hospitalized can also be a stressful and unsettling experience. It is crucial to understand and address the various needs of hospitalized individuals with psychiatric disorders to promote their overall well-being and support their recovery. Objective: Our objectives were to identify and describe individual needs related to mental hospitals through peer-to-peer interactions on Polish web-based forums among individuals with depression and anxiety disorders and to assess whether these needs were addressed by peers. Methods: We conducted a search of web-based forums focused on depression and anxiety and selected samples of 160 and 176 posts, respectively, until we reached saturation. A mixed methods analysis that included an in-depth content analysis, the Pearson ?2 test, and ? coefficient was used to evaluate the posts. Results: The most frequently identified needs were the same for depression and anxiety forums and involved informational (105/160, 65.6% and 169/393, 43%, respectively), social life (17/160, 10.6% and 90/393, 22.9%, respectively), and emotional (9/160, 5.6% and 66/393, 16.8%, respectively) needs. The results show that there is no difference in the expression of needs between the analyzed forums. The needs were directly (42/47, 89% vs 98/110, 89.1% of times for depression and anxiety, respectively) and not fully (27/47, 57% vs 86/110, 78.2% of times for depression and anxiety, respectively) addressed by forum users. In quantitative analysis, we found that depression-related forums had more posts about the need for informational support and rectification, the expression of anger, and seeking professional support. By contrast, anxiety-related forums had more posts about the need for emotional support; social life; and information concerning medications, hope, and motivation. The most common co-occurrence of expressed needs was between sharing own experience and the need for professional support, with a strong positive association. The qualitative analysis showed that users join web-based communities to discuss their fears and questions about psychiatric hospitals. The posts revealed 4 mental and emotional representations of psychiatric hospitals: the hospital as an unknown place, the ambivalence of presumptions and needs, the negative representation of psychiatric hospitals, and the people associated with psychiatric hospitals. The tone of the posts was mostly negative, with discussions revolving around negative stereotypes; traumatic experiences; and beliefs that increased anxiety, shock, and fright and deterred users from hospitalization. Conclusions: Our study demonstrates that web-based forums can provide a platform for individuals with depression and anxiety disorders to express a wide range of needs. Most needs were addressed by peers but not sufficiently. Mental health professionals can benefit from these findings by gaining insights into the unique needs and concerns of their patients, thus allowing for more effective treatment and support. UR - https://www.jmir.org/2024/1/e51506 UR - http://dx.doi.org/10.2196/51506 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/51506 ER - TY - JOUR AU - Turuba, Roxanne AU - Cormier, Willow AU - Zimmerman, Rae AU - Ow, Nikki AU - Zenone, Marco AU - Quintana, Yuri AU - Jenkins, Emily AU - Ben-David, Shelly AU - Raimundo, Alicia AU - Marcon, R. Alessandro AU - Mathias, Steve AU - Henderson, Jo AU - Barbic, Skye PY - 2024/7/5 TI - Exploring How Youth Use TikTok for Mental Health Information in British Columbia: Semistructured Interview Study With Youth JO - JMIR Infodemiology SP - e53233 VL - 4 KW - youth KW - adolescents KW - young adults KW - mental health KW - TikTok KW - social media KW - qualitative research N2 - Background: TikTok (ByteDance) experienced a surge in popularity during the COVID-19 pandemic as a way for people to interact with others, share experiences and thoughts related to the pandemic, and cope with ongoing mental health challenges. However, few studies have explored how youth use TikTok to learn about mental health. Objective: This study aims to understand how youth used TikTok during the COVID-19 pandemic to learn about mental health and mental health support. Methods: Semistructured interviews were conducted with 21 youths (aged 12-24 years) living in British Columbia, Canada, who had accessed TikTok for mental health information during the COVID-19 pandemic. Interviews were audio-recorded, transcribed verbatim, coded, and analyzed using an inductive, data-driven approach. Results: A total of 3 overarching themes were identified describing youth?s experiences. The first theme centered on how TikTok gave youth easy access to mental health information and support, which was particularly helpful during the COVID-19 pandemic to curb the effects of social isolation and the additional challenges of accessing mental health services. The second theme described how the platform provided youth with connection, as it gave youth a safe space to talk about mental health and allowed them to feel seen by others going through similar experiences. This helped normalize and destigmatize conversations about mental health and brought awareness to various mental health conditions. Finally, the last theme focused on how this information led to action, such as trying different coping strategies, discussing mental health with peers and family, accessing mental health services, and advocating for themselves during medical appointments. Across the 3 themes, youth expressed having to be mindful of bias and misinformation, highlighting the barriers to identifying and reporting misinformation and providing individualized advice on the platform. Conclusions: Findings suggest that TikTok can be a useful tool to increase mental health awareness, reduce stigma, and encourage youth to learn and address their mental health challenges while providing a source of peer connection and support. Simultaneously, TikTok can adversely impact mental health through repetitive exposure to mentally distressing content and misleading diagnosis and treatment information. Regulations against harmful content are needed to mitigate these risks and make TikTok safer for youth. Efforts should also be made to increase media and health literacy among youth so that they can better assess the information they consume online. UR - https://infodemiology.jmir.org/2024/1/e53233 UR - http://dx.doi.org/10.2196/53233 UR - http://www.ncbi.nlm.nih.gov/pubmed/38967966 ID - info:doi/10.2196/53233 ER - TY - JOUR AU - Paquin, Vincent AU - Ackerman, A. Robert AU - Depp, A. Colin AU - Moore, C. Raeanne AU - Harvey, D. Philip AU - Pinkham, E. Amy PY - 2024/7/3 TI - Media Use and Its Associations With Paranoia in Schizophrenia and Bipolar Disorder: Ecological Momentary Assessment JO - JMIR Ment Health SP - e59198 VL - 11 KW - paranoia KW - social media KW - digital media KW - technology KW - psychosis KW - schizophrenia KW - schizoaffective KW - bipolar disorder KW - ecological momentary assessment KW - spectrum KW - sociodemographic KW - linear mixed model KW - media use KW - mental health KW - digital intervention KW - adult KW - adults KW - medical center KW - mental health clinic KW - psychiatry KW - psychiatrist N2 - Background: Paranoia is a spectrum of fear-related experiences that spans diagnostic categories and is influenced by social and cognitive factors. The extent to which social media and other types of media use are associated with paranoia remains unclear. Objective: We aimed to examine associations between media use and paranoia at the within- and between-person levels. Methods: Participants were 409 individuals diagnosed with schizophrenia spectrum or bipolar disorder. Measures included sociodemographic and clinical characteristics at baseline, followed by ecological momentary assessments (EMAs) collected 3 times daily over 30 days. EMA evaluated paranoia and 5 types of media use: social media, television, music, reading or writing, and other internet or computer use. Generalized linear mixed models were used to examine paranoia as a function of each type of media use and vice versa at the within- and between-person levels. Results: Of the 409 participants, the following subgroups reported at least 1 instance of media use: 261 (63.8%) for using social media, 385 (94.1%) for watching TV, 292 (71.4%) for listening to music, 191 (46.7%) for reading or writing, and 280 (68.5%) for other internet or computer use. Gender, ethnoracial groups, educational attainment, and diagnosis of schizophrenia versus bipolar disorder were differentially associated with the likelihood of media use. There was a within-person association between social media use and paranoia: using social media was associated with a subsequent decrease of 5.5% (fold-change 0.945, 95% CI 0.904-0.987) in paranoia. The reverse association, from paranoia to subsequent changes in social media use, was not statistically significant. Other types of media use were not significantly associated with paranoia. Conclusions: This study shows that social media use was associated with a modest decrease in paranoia, perhaps reflecting the clinical benefits of social connection. However, structural disadvantage and individual factors may hamper the accessibility of media activities, and the mental health correlates of media use may further vary as a function of contents and contexts of use. UR - https://mental.jmir.org/2024/1/e59198 UR - http://dx.doi.org/10.2196/59198 ID - info:doi/10.2196/59198 ER - TY - JOUR AU - Syed, Ahmed Toufeeq AU - Thompson, L. Erika AU - Johnson, Jason AU - Latif, Zainab AU - Kennedy, Nan AU - Javier, Damaris AU - Stinson, Katie AU - Vishwanatha, K. Jamboor PY - 2024/7/2 TI - A/B Testing of User Enrollment Forms to Enhance Diversity in the Biomedical Workforce via the National Research Mentoring Network: User-Centered Design Case Study JO - JMIR Hum Factors SP - e54532 VL - 11 KW - diversity KW - mentoring KW - health workforce KW - underrepresented groups KW - online platform KW - user-computer interface KW - A/B testing KW - split testing KW - recommendation algorithm KW - network of mentors KW - groups KW - enrollment N2 - Background: The National Research Mentoring Network (NRMN) is a National Institutes of Health?funded program for diversifying the science, technology, engineering, math, and medicine research workforce through the provision of mentoring, networking, and professional development resources. The NRMN provides mentoring resources to members through its online platform?MyNRMN. Objective: MyNRMN helps members build a network of mentors. Our goal was to expand enrollment and mentoring connections, especially among those who have been historically underrepresented in biomedical training and the biomedical workforce. Methods: To improve the ease of enrollment, we implemented the split testing of iterations of our user interface for platform registration. To increase mentoring connections, we developed multiple features that facilitate connecting via different pathways. Results: Our improved user interface yielded significantly higher rates of completed registrations (P<.001). Our analysis showed improvement in completed enrollments that used the version 1 form when compared to those that used the legacy form (odds ratio 1.52, 95% CI 1.30-1.78). The version 2 form, with its simplified, 1-step process and fewer required fields, outperformed the legacy form (odds ratio 2.18, 95% CI 1.90-2.50). By improving the enrollment form, the rate of MyNRMN enrollment completion increased from 57.3% (784/1368) with the legacy form to 74.5% (2016/2706) with the version 2 form. Our newly developed features delivered an increase in connections between members. Conclusions: Our technical efforts expanded MyNRMN?s membership base and increased connections between members. Other platform development teams can learn from these efforts to increase enrollment among underrepresented groups and foster continuing, successful engagement. UR - https://humanfactors.jmir.org/2024/1/e54532 UR - http://dx.doi.org/10.2196/54532 ID - info:doi/10.2196/54532 ER - TY - JOUR AU - Faccio, Elena AU - Reggiani, Margherita AU - Rocelli, Michele AU - Cipolletta, Sabrina PY - 2024/7/2 TI - Issues Related to the Use of Visual Social Networks and Perceived Usefulness of Social Media Literacy During the Recovery Phase: Qualitative Research Among Girls With Eating Disorders JO - J Med Internet Res SP - e53334 VL - 26 KW - visual social networks KW - body image KW - eating disorders KW - risks KW - potentials KW - social networks KW - social network KW - social media KW - literacy KW - food intake KW - appetite disorders KW - appetite disorder KW - eating disorder KW - patient safety KW - patient-centered approach KW - recovery KW - body comparison KW - users KW - semistructured interviews KW - semistructured interview KW - girls KW - adolescent KW - adolescents KW - content analysis KW - online N2 - Background: The patient-centered approach is essential for quality health care and patient safety. Understanding the service user?s perspective on the factors maintaining the health problem is crucial for successful treatment, especially for patients who do not recognize their condition as clinically relevant or concerning. Despite the association between intensive use of visual social media and body dissatisfaction and eating disorders, little is known about the meanings users assign to posting or searching for edited photos and the strategies they use to protect themselves from digital risks. Objective: This study aims to examine how young women recovering from eating disorders in Northern Italy perceive the health risks and potential benefits associated with visual social networks (ie, Instagram and Snapchat). The literature has found these platforms to be detrimental to online body comparisons. It also explores the perceived usefulness, willingness, and personal interest in coconstructing social media literacy programs with girls recovering from eating disorders. Methods: A total of 30 semistructured interviews were conducted with adolescent girls aged 14-17 years at the end of their treatment for eating disorders. The following areas of research were addressed: (1) the meanings associated with the use of Instagram and Snapchat; (2) the investment in the photographic dimension and feedback; (3) the impact of visual social networks on body experiences; (4) the potential and risks perceived in their use; (5) the importance of supporting girls undergoing treatment for eating disorders in using social networks; and (6) the usefulness and willingness to co-design social network literacy programs. Content analysis was applied. Results: A total of 7 main contents emerged: active or passive role in using social networks, the impact of online interactions on body image, investment in the photographic dimension, effects on self-representation, perceived risks, self-protective strategies, and potential benefits. The findings highlight a strong awareness of the processes that trigger body comparisons in the virtual context, creating insecurity and worsening the relationship with oneself. The self-protective behaviors identified are the development of critical thinking, the avoidance of sensitive content, increased control over social networking site use, and a certain skepticism toward developing antagonistic ideologies. All these topics were considered fundamental. Conclusions: The findings provide important insights for health professionals working with youth in preparing media literacy programs. These programs aim to reduce potential risks and amplify the positive effects of online resources. They underscore the importance of addressing this issue during hospitalization to develop skills and critical thinking aimed at changing small habits that perpetuate the problem in everyday life. The inherent limitations in current service practices, which may not adequately address individual needs or impact posttreatment life, must also be considered. UR - https://www.jmir.org/2024/1/e53334 UR - http://dx.doi.org/10.2196/53334 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/53334 ER - TY - JOUR AU - Sharpe, Casey AU - Bhuptani, Saloni AU - Jecks, Mike AU - Sheron, Nick AU - Henn, Clive AU - Burton, Robyn PY - 2024/6/28 TI - Availability of Alcohol on an Online Third-Party Delivery Platform Across London Boroughs, England: Exploratory Cross-Sectional Study JO - JMIR Form Res SP - e54587 VL - 8 KW - alcohol KW - availability KW - online KW - third-party delivery platforms KW - England KW - cross-sectional study KW - exploratory KW - licensing KW - public health KW - policy N2 - Background: Higher availability of alcohol is associated with higher levels of alcohol consumption and harm. Alcohol is increasingly accessible online, with rapid delivery often offered by a third-party driver. Remote delivery and online availability are important from a public health perspective, but to date, relatively little research has explored the availability of alcohol offered by online platforms. Objective: This cross-sectional exploratory study describes the availability of alcohol on the third-party platform Deliveroo within London, England. Methods: We extracted the number of outlets offering alcohol on Deliveroo for each London borough and converted these into crude rates per 1000 population (18-64 years). Outlets were grouped as outlets exclusively selling alcohol, off-licenses, and premium. We calculated Pearson correlation coefficients to explore the association between borough?s crude rate of outlets per 1000 population and average Indices of Multiple Deprivation (IMD) 2019 scores. We extracted the number of outlets also selling tobacco or e-cigarettes and used non-Deliveroo drivers. We searched addresses of the top 20 outlets delivering to the most boroughs by outlet type (60 total) to determine their associated premise. Results: We identified 4277 total Deliveroo-based outlets offering alcohol across London, including outlets delivering in multiple boroughs. The crude rate of outlets per 1000 population aged 18-64 years was 0.73 and ranged from 0.22 to 2.29 per borough. Most outlets exclusively sold alcohol (3086/4277, 72.2%), followed by off-licenses (770/4277, 18.0%) and premium (421/4277, 9.8%). The majority of outlets exclusively selling alcohol sold tobacco or e-cigarettes (2951/3086, 95.6%) as did off-licenses to a lesser extent (588/770, 76.4%). Most outlets exclusively offering alcohol used drivers not employed by Deliveroo (2887/3086, 93.6%), and the inverse was true for premium outlets (50/421, 11.9%) and off-licenses (73/770, 9.5%). There were 1049 unique outlets, of which 396 (37.8%) were exclusively offering alcohol?these outlets tended to deliver across multiple boroughs unlike off-licenses and premium outlets. Of outlets with confirmed addresses, self-storage units were listed as the associated premise for 85% (17/20) of outlets exclusively offering alcohol, 11% (2/19) of off-licenses, and 12% (2/17) of premium outlets. We found no significant relationship between borough IMD scores and crude rate of outlets per 1000 population overall (P=.87) or by any outlet type: exclusively alcohol (P=.41), off-license (P=.58), and premium (P=.18). Conclusions: London-based Deliveroo outlets offering alcohol are common and are sometimes operating from self-storage units that have policies prohibiting alcohol storage. This and the potential for increased alcohol accessibility online have implications for public health given the relationship between alcohol?s availability and consumption or harm. There is a need to ensure that regulations for delivery are adequate for protecting children and vulnerable adults. The Licensing Act 2003 may require modernization in the digital age. Future research must explore a relationship between online alcohol availability and deprivation. UR - https://formative.jmir.org/2024/1/e54587 UR - http://dx.doi.org/10.2196/54587 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/54587 ER - TY - JOUR AU - Szeto, D. Mindy AU - Hook Sobotka, Michelle AU - Woolhiser, Emily AU - Parmar, Pritika AU - Wu, Jieying AU - Alhanshali, Lina AU - Dellavalle, P. Robert PY - 2024/6/26 TI - PatientsLikeMe and Online Patient Support Communities in Dermatology JO - JMIR Dermatol SP - e50453 VL - 7 KW - PatientsLikeMe KW - PLM KW - online support communities KW - social media KW - forums KW - discussion boards KW - internet KW - misinformation KW - community engagement KW - representation KW - demographics KW - lived experience KW - atopic dermatitis KW - prevalence UR - https://derma.jmir.org/2024/1/e50453 UR - http://dx.doi.org/10.2196/50453 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/50453 ER - TY - JOUR AU - Aqib, Ayma AU - Fareez, Faiha AU - Assadpour, Elnaz AU - Babar, Tubba AU - Kokavec, Andrew AU - Wang, Edward AU - Lo, Thomas AU - Lam, Jean-Paul AU - Smith, Christopher PY - 2024/6/20 TI - Development of a Novel Web-Based Tool to Enhance Clinical Skills in Medical Education JO - JMIR Med Educ SP - e47438 VL - 10 KW - medical education KW - objective structured clinical examination KW - OSCE KW - e-OSCE KW - Medical Council of Canada KW - MCC KW - virtual health KW - exam KW - examination KW - utility KW - usability KW - online learning KW - e-learning KW - medical student KW - medical students KW - clinical practice KW - clinical skills KW - clinical skill KW - OSCE tool UR - https://mededu.jmir.org/2024/1/e47438 UR - http://dx.doi.org/10.2196/47438 ID - info:doi/10.2196/47438 ER - TY - JOUR AU - Pickett, C. Andrew AU - Valdez, Danny AU - Sinclair, L. Kelsey AU - Kochell, J. Wesley AU - Fowler, Boone AU - Werner, E. Nicole PY - 2024/6/19 TI - Social Media Discourse Related to Caregiving for Older Adults Living With Alzheimer Disease and Related Dementias: Computational and Qualitative Study JO - JMIR Aging SP - e59294 VL - 7 KW - caregiving KW - dementia KW - social support KW - social media KW - Reddit N2 - Background: In the United States, caregivers of people living with Alzheimer disease and Alzheimer disease?related dementias (AD/ADRD) provide >16 billion hours of unpaid care annually. These caregivers experience high levels of stress and burden related to the challenges associated with providing care. Social media is an emerging space for individuals to seek various forms of support. Objective: We aimed to explore the primary topics of conversation on the social media site Reddit related to AD/ADRD. We then aimed to explore these topics in depth, specifically examining elements of social support and behavioral symptomology discussed by users. Methods: We first generated an unsupervised topic model from 6563 posts made to 2 dementia-specific subreddit forums (r/Alzheimers and r/dementia). Then, we conducted a manual qualitative content analysis of a random subset of these data to further explore salient themes in the corpus. Results: The topic model with the highest overall coherence score (0.38) included 10 topics, including caregiver burden, anxiety, support-seeking, and AD/ADRD behavioral symptomology. Qualitative analyses provided added context, wherein users sought emotional and informational support for many aspects of the care experience, including assistance in making key care-related decisions. Users expressed challenging and complex emotions on Reddit, which may be taboo to express in person. Conclusions: Reddit users seek many different forms of support, including emotional and specific informational support, from others on the internet. Users expressed a variety of concerns, challenges, and behavioral symptoms to manage as part of the care experience. The unique (ie, anonymous and moderated) nature of the forum allowed for a safe space to express emotions free from documented caregiver stigma. Additional support structures are needed to assist caregivers of people living with AD/ADRD. UR - https://aging.jmir.org/2024/1/e59294 UR - http://dx.doi.org/10.2196/59294 UR - http://www.ncbi.nlm.nih.gov/pubmed/38896462 ID - info:doi/10.2196/59294 ER - TY - JOUR AU - Karapetiantz, Pierre AU - Audeh, Bissan AU - Redjdal, Akram AU - Tiffet, Théophile AU - Bousquet, Cédric AU - Jaulent, Marie-Christine PY - 2024/6/18 TI - Monitoring Adverse Drug Events in Web Forums: Evaluation of a Pipeline and Use Case Study JO - J Med Internet Res SP - e46176 VL - 26 KW - pharmacovigilance KW - social media KW - scraper KW - natural language processing KW - signal detection KW - graphical user interface N2 - Background: To mitigate safety concerns, regulatory agencies must make informed decisions regarding drug usage and adverse drug events (ADEs). The primary pharmacovigilance data stem from spontaneous reports by health care professionals. However, underreporting poses a notable challenge within the current system. Explorations into alternative sources, including electronic patient records and social media, have been undertaken. Nevertheless, social media?s potential remains largely untapped in real-world scenarios. Objective: The challenge faced by regulatory agencies in using social media is primarily attributed to the absence of suitable tools to support decision makers. An effective tool should enable access to information via a graphical user interface, presenting data in a user-friendly manner rather than in their raw form. This interface should offer various visualization options, empowering users to choose representations that best convey the data and facilitate informed decision-making. Thus, this study aims to assess the potential of integrating social media into pharmacovigilance and enhancing decision-making with this novel data source. To achieve this, our objective was to develop and assess a pipeline that processes data from the extraction of web forum posts to the generation of indicators and alerts within a visual and interactive environment. The goal was to create a user-friendly tool that enables regulatory authorities to make better-informed decisions effectively. Methods: To enhance pharmacovigilance efforts, we have devised a pipeline comprising 4 distinct modules, each independently editable, aimed at efficiently analyzing health-related French web forums. These modules were (1) web forums? posts extraction, (2) web forums? posts annotation, (3) statistics and signal detection algorithm, and (4) a graphical user interface (GUI). We showcase the efficacy of the GUI through an illustrative case study involving the introduction of the new formula of Levothyrox in France. This event led to a surge in reports to the French regulatory authority. Results: Between January 1, 2017, and February 28, 2021, a total of 2,081,296 posts were extracted from 23 French web forums. These posts contained 437,192 normalized drug-ADE couples, annotated with the Anatomical Therapeutic Chemical (ATC) Classification and Medical Dictionary for Regulatory Activities (MedDRA). The analysis of the Levothyrox new formula revealed a notable pattern. In August 2017, there was a sharp increase in posts related to this medication on social media platforms, which coincided with a substantial uptick in reports submitted by patients to the national regulatory authority during the same period. Conclusions: We demonstrated that conducting quantitative analysis using the GUI is straightforward and requires no coding. The results aligned with prior research and also offered potential insights into drug-related matters. Our hypothesis received partial confirmation because the final users were not involved in the evaluation process. Further studies, concentrating on ergonomics and the impact on professionals within regulatory agencies, are imperative for future research endeavors. We emphasized the versatility of our approach and the seamless interoperability between different modules over the performance of individual modules. Specifically, the annotation module was integrated early in the development process and could undergo substantial enhancement by leveraging contemporary techniques rooted in the Transformers architecture. Our pipeline holds potential applications in health surveillance by regulatory agencies or pharmaceutical companies, aiding in the identification of safety concerns. Moreover, it could be used by research teams for retrospective analysis of events. UR - https://www.jmir.org/2024/1/e46176 UR - http://dx.doi.org/10.2196/46176 UR - http://www.ncbi.nlm.nih.gov/pubmed/38888956 ID - info:doi/10.2196/46176 ER - TY - JOUR AU - Peart, Annette AU - Horn, Freya AU - Petukhova, Rachel AU - Barnett, Anthony AU - Lubman, I. Dan PY - 2024/6/17 TI - Web-Based Forums for People Experiencing Substance Use or Gambling Disorders: Scoping Review JO - JMIR Ment Health SP - e49010 VL - 11 KW - web-based forums KW - peer support KW - substance use KW - gambling KW - scoping KW - review method KW - review methodology KW - forum KW - forums KW - substance abuse KW - addiction KW - addictive KW - addictions KW - peer-based N2 - Background: For people experiencing substance use or gambling disorders, web-based peer-supported forums are a space where they can share their experiences, gather around a collective goal, and find mutual support. Web-based peer support can help to overcome barriers to attending face-to-face meetings by enabling people experiencing addiction to seek support beyond their physical location and with the benefit of anonymity if desired. Understanding who participates in web-based peer-supported forums (and how), and the principles underpinning forums, can also assist those interested in designing or implementing similar platforms. Objective: This study aims to review the literature on how people experiencing substance use or gambling disorders, and their family, friends, and supporters, use and participate in web-based peer-supported forums. Specifically, we asked the following research questions: (1) What are the characteristics of people who use web-based peer-supported substance use or gambling-focused forums? (2) How do people participate in web-based peer-supported forums? (3) What are the key principles reportedly underpinning the web-based peer-supported forums? (4) What are the reported outcomes of web-based peer-supported forums? Methods: Inclusion criteria for our scoping review were peer-reviewed primary studies reporting on web-based addiction forums for adults and available in English. A primary search of 10 databases occurred in June 2021, with 2 subsequent citation searches of included studies in September 2022 and February 2024. Results: Of the 14 included studies, the majority of web-based peer-supported forums reported were aimed specifically for, or largely used by, people experiencing alcohol problems. Results from the 9 studies that did report demographic data suggest forum users were typically women, aged between 40 years and early 50 years. Participation in web-based peer-supported forums was reported quantitatively and qualitatively. The forums reportedly were underpinned by a range of key principles, mostly mutual help approaches and recovery identity formation. Only 3 included studies reported on outcomes for forum users. Conclusions: Web-based peer-supported forums are used by people experiencing addiction in a number of ways, to share information and experiences, and give and receive support. Seeking web-based support offers an alternative approach to traditional face-to-face support options, and may reduce some barriers to engaging in peer support. UR - https://mental.jmir.org/2024/1/e49010 UR - http://dx.doi.org/10.2196/49010 UR - http://www.ncbi.nlm.nih.gov/pubmed/38885012 ID - info:doi/10.2196/49010 ER - TY - JOUR AU - Syed, Ahmed Toufeeq AU - Thompson, L. Erika AU - Latif, Zainab AU - Johnson, Jay AU - Javier, Damaris AU - Stinson, Katie AU - Saleh, Gabrielle AU - Vishwanatha, K. Jamboor PY - 2024/6/17 TI - Diverse Mentoring Connections Across Institutional Boundaries in the Biomedical Sciences: Innovative Graph Database Analysis JO - J Med Internet Res SP - e47560 VL - 26 KW - online platform KW - mentorship KW - diversity KW - network analysis KW - graph database KW - online communities N2 - Background: With an overarching goal of increasing diversity and inclusion in biomedical sciences, the National Research Mentoring Network (NRMN) developed a web-based national mentoring platform (MyNRMN) that seeks to connect mentors and mentees to support the persistence of underrepresented minorities in the biomedical sciences. As of May 15, 2024, the MyNRMN platform, which provides mentoring, networking, and professional development tools, has facilitated more than 12,100 unique mentoring connections between faculty, students, and researchers in the biomedical domain. Objective: This study aimed to examine the large-scale mentoring connections facilitated by our web-based platform between students (mentees) and faculty (mentors) across institutional and geographic boundaries. Using an innovative graph database, we analyzed diverse mentoring connections between mentors and mentees across demographic characteristics in the biomedical sciences. Methods: Through the MyNRMN platform, we observed profile data and analyzed mentoring connections made between students and faculty across institutional boundaries by race, ethnicity, gender, institution type, and educational attainment between July 1, 2016, and May 31, 2021. Results: In total, there were 15,024 connections with 2222 mentees and 1652 mentors across 1625 institutions contributing data. Female mentees participated in the highest number of connections (3996/6108, 65%), whereas female mentors participated in 58% (5206/8916) of the connections. Black mentees made up 38% (2297/6108) of the connections, whereas White mentors participated in 56% (5036/8916) of the connections. Mentees were predominately from institutions classified as Research 1 (R1; doctoral universities?very high research activity) and historically Black colleges and universities (556/2222, 25% and 307/2222, 14%, respectively), whereas 31% (504/1652) of mentors were from R1 institutions. Conclusions: To date, the utility of mentoring connections across institutions throughout the United States and how mentors and mentees are connected is unknown. This study examined these connections and the diversity of these connections using an extensive web-based mentoring network. UR - https://www.jmir.org/2024/1/e47560 UR - http://dx.doi.org/10.2196/47560 UR - http://www.ncbi.nlm.nih.gov/pubmed/38885013 ID - info:doi/10.2196/47560 ER - TY - JOUR AU - Jackson, Kristina AU - Meisel, Matthew AU - Sokolovsky, Alexander AU - Chen, Katie AU - Barnett, Nancy PY - 2024/6/6 TI - Detecting and Understanding Social Influence During Drinking Situations: Protocol for a Bluetooth-Based Sensor Feasibility and Acceptability Study JO - JMIR Res Protoc SP - e50650 VL - 13 KW - Bluetooth technology KW - passive sensing KW - social influence KW - alcohol use KW - ecological momentary assessment KW - social network KW - feasibility KW - acceptability KW - mobile phone N2 - Background: High-risk alcohol consumption among young adults frequently occurs in the presence of peers who are also drinking. A high-risk drinking situation may consist of particular social network members who have a primary association with drinking. Fine-grained approaches such as ecological momentary assessment (EMA) are growing in popularity for studying real-time social influence, but studies using these approaches exclusively rely on participant self-report. Passive indicators of peer presence using Bluetooth-based technology to detect real-time interactions have the potential to assist in the development of just-in-time interventions. Objective: This study seeks to examine the feasibility and acceptability of using a Bluetooth-based sensor and smartphone app to measure social contact in real-world drinking situations. Methods: Young adults (N=20) who drink heavily and report social drinking will be recruited from the community to participate in a 3-week EMA study. Using a social network interview, index participants will identify and recruit 3 of their friends to carry a Bluetooth beacon. Participants will complete a series of EMA reports on their own personal Android devices including random reports; morning reports; first-drink reports; and signal-contingent reports, which are triggered following the detection of a beacon carried by a peer participant. EMA will assess alcohol use and characteristics of the social environment, including who is nearby and who is drinking. For items about peer proximity and peer drinking, a customized peer list will be presented to participants. Feedback about the study protocol will be ascertained through weekly contact with both index and peer participants, followed by a qualitative interview at the end of the study. We will examine the feasibility and acceptability of recruitment, enrollment of participants and peers, and retention. Feasibility will be determined using indexes of eligibility, enrollment, and recruitment. Acceptability will be determined through participant enrollment and retention, protocol compliance, and participant-reported measures of acceptability. Feasibility and acceptability for peer participants will be informed by enrollment rates, latency to enrollment, compliance with carrying the beacon, and self-reported reasons for compliance or noncompliance with beacon procedures. Finally, EMA data about peer proximity and peer drinking will support the validity of the peer selection process. Results: Participant recruitment began in February 2023, and enrollment was completed in December 2023. Results will be reported in 2025. Conclusions: The protocol allows us to examine the feasibility and acceptability of a Bluetooth-based sensor for the detection of social contact between index participants and their friends, including social interactions during real-world drinking situations. Data from this study will inform just-in-time adaptive interventions seeking to address drinking in the natural environment by providing personalized feedback about a high-risk social context and alerting an individual that they are in a potentially unsafe situation. International Registered Report Identifier (IRRID): DERR1-10.2196/50650 UR - https://www.researchprotocols.org/2024/1/e50650 UR - http://dx.doi.org/10.2196/50650 UR - http://www.ncbi.nlm.nih.gov/pubmed/38842927 ID - info:doi/10.2196/50650 ER - TY - JOUR AU - Weng, Huiqin Janice AU - Hu, Yanyan AU - Heaukulani, Creighton AU - Tan, Clarence AU - Chang, Kuiyu Julian AU - Phang, Sheng Ye AU - Rajendram, Priyanka AU - Tan, Mooi Weng AU - Loke, Chiong Wai AU - Morris, T. Robert J. PY - 2024/6/4 TI - Mental Wellness Self-Care in Singapore With mindline.sg: A Tutorial on the Development of a Digital Mental Health Platform for Behavior Change JO - J Med Internet Res SP - e44443 VL - 26 KW - digital mental health KW - artificial intelligence KW - AI KW - AI chatbot KW - digital therapeutics KW - mental health KW - mental wellness KW - mobile phone N2 - Background: Singapore, like the rest of Asia, faces persistent challenges to mental health promotion, including stigma around unwellness and seeking treatment and a lack of trained mental health personnel. The COVID-19 pandemic, which created a surge in mental health care needs and simultaneously accelerated the adoption of digital health solutions, revealed a new opportunity to quickly scale innovative solutions in the region. Objective: In June 2020, the Singaporean government launched mindline.sg, an anonymous digital mental health resource website that has grown to include >500 curated local mental health resources, a clinically validated self-assessment tool for depression and anxiety, an artificial intelligence (AI) chatbot from Wysa designed to deliver digital therapeutic exercises, and a tailored version of the website for working adults called mindline at work. The goal of the platform is to empower Singapore residents to take charge of their own mental health and to be able to offer basic support to those around them through the ease and convenience of a barrier-free digital solution. Methods: Website use is measured through click-level data analytics captured via Google Analytics and custom application programming interfaces, which in turn drive a customized analytics infrastructure based on the open-source platforms Titanium Database and Metabase. Unique, nonbounced (users that do not immediately navigate away from the site), engaged, and return users are reported. Results: In the 2 years following launch (July 1, 2020, through June 30, 2022), the website received >447,000 visitors (approximately 15% of the target population of 3 million), 62.02% (277,727/447,783) of whom explored the site or engaged with resources (referred to as nonbounced visitors); 10.54% (29,271/277,727) of those nonbounced visitors returned. The most popular features on the platform were the dialogue-based therapeutic exercises delivered by the chatbot and the self-assessment tool, which were used by 25.54% (67,626/264,758) and 11.69% (32,469/277,727) of nonbounced visitors. On mindline at work, the rates of nonbounced visitors who engaged extensively (ie, spent ?40 seconds exploring resources) and who returned were 51.56% (22,474/43,588) and 13.43% (5,853/43,588) over a year, respectively, compared to 30.9% (42,829/138,626) and 9.97% (13,822/138,626), respectively, on the generic mindline.sg site in the same year. Conclusions: The site has achieved desired reach and has seen a strong growth rate in the number of visitors, which required substantial and sustained digital marketing campaigns and strategic outreach partnerships. The site was careful to preserve anonymity, limiting the detail of analytics. The good levels of overall adoption encourage us to believe that mild to moderate mental health conditions and the social factors that underly them are amenable to digital interventions. While mindline.sg was primarily used in Singapore, we believe that similar solutions with local customization are widely and globally applicable. UR - https://www.jmir.org/2024/1/e44443 UR - http://dx.doi.org/10.2196/44443 UR - http://www.ncbi.nlm.nih.gov/pubmed/38833294 ID - info:doi/10.2196/44443 ER - TY - JOUR AU - Pike, E. Caitlin AU - Dohnt, C. Henriette AU - Tully, J. Phillip AU - Bartik, Warren AU - Welton-Mitchell, Courtney AU - Murray, V. Clara AU - Rice, Kylie AU - Cosh, M. Suzanne AU - Lykins, D. Amy PY - 2024/6/4 TI - A Community Mental Health Integrated Disaster Preparedness Intervention for Bushfire Recovery in Rural Australian Communities: Protocol for a Multimethods Feasibility and Acceptability Pilot Study JO - JMIR Res Protoc SP - e53454 VL - 13 KW - bushfires KW - wildfires KW - rural mental health KW - natural disasters KW - mental health KW - disaster preparedness KW - natural hazards resilience KW - community interventions KW - mixed-methods KW - pilot study KW - disaster KW - preparedness KW - preparation KW - natural hazard KW - psychological distress KW - resilience KW - help-seeking N2 - Background: Natural hazards are increasing in frequency and intensity due to climate change. Many of these natural disasters cannot be prevented; what may be reduced is the extent of the risk and negative impact on people and property. Research indicates that the 2019-2020 bushfires in Australia (also known as the ?Black Summer Bushfires?) resulted in significant psychological distress among Australians both directly and indirectly exposed to the fires. Previous intervention research suggests that communities impacted by natural hazards (eg, earthquakes, hurricanes, and floods) can benefit from interventions that integrate mental health and social support components within disaster preparedness frameworks. Research suggests that disaster-affected communities often prefer the support of community leaders, local services, and preexisting relationships over external supports, highlighting that community-based interventions, where knowledge stays within the local community, are highly beneficial. The Community-Based Disaster Mental Health Intervention (CBDMHI) is an evidence-based approach that aims to increase disaster preparedness, resilience, social cohesion, and social support (disaster-related help-seeking), and decrease mental health symptoms, such as depression and anxiety. Objective: This research aims to gain insight into rural Australian?s recovery needs post natural hazards, and to enhance community resilience in advance of future fires. Specifically, this research aims to adapt the CBDMHI for the rural Australian context and for bushfires and second, to assess the acceptability and feasibility of the adapted CBDMHI in a rural Australian community. Methods: Phase 1 consists of qualitative interviews (individual or dyads) with members of the target bushfire-affected rural community. Analysis of these data will include identifying themes related to disaster preparedness, social cohesion, and mental health, which will inform the adaptation. An initial consultation phase is a key component of the adaptation process and, therefore, phase 2 will involve additional discussion with key stakeholders and members of the community to further guide adaptation of the CBDMHI to specific community needs, building on phase 1 inputs. Phase 3 includes identifying and training local community leaders in the adapted intervention. Following this, leaders will co-deliver the intervention. The acceptability and feasibility of the adapted CBDMHI within the community will be evaluated by questionnaires and semistructured interviews. Effectiveness will be evaluated by quantifying psychological distress, resilience, community cohesion, psychological preparedness, and help-seeking intentions. Results: This study has received institutional review board approval and commenced phase 1 recruitment in October 2022. Conclusions: The study will identify if the adapted CBDMHI is viable and acceptable within a village in the Northern Tablelands of New South Wales, Australia. These findings will inform future scale-up in the broader rural Australian context. If this intervention is well received, the CBDMHI may be valuable for future disaster recovery and preparedness efforts in rural Australia. These findings may inform future scale-up in the broader rural Australian context. International Registered Report Identifier (IRRID): DERR1-10.2196/53454 UR - https://www.researchprotocols.org/2024/1/e53454 UR - http://dx.doi.org/10.2196/53454 UR - http://www.ncbi.nlm.nih.gov/pubmed/38833279 ID - info:doi/10.2196/53454 ER - TY - JOUR AU - Yin, Zhijun AU - Stratton, Lauren AU - Song, Qingyuan AU - Ni, Congning AU - Song, Lijun AU - Commiskey, Patricia AU - Chen, Qingxia AU - Moreno, Monica AU - Fazio, Sam AU - Malin, Bradley PY - 2024/5/31 TI - Perceptions and Utilization of Online Peer Support Among Informal Dementia Caregivers: Survey Study JO - JMIR Aging SP - e55169 VL - 7 KW - informal dementia caregiver KW - online health community KW - social support KW - survey KW - online peer support KW - caregiving challenges N2 - Background: Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but this research is limited, focusing merely on caregivers who are already online community users. Objective: We aimed to investigate the perceptions and utilization of online peer support through a survey. Methods: Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers? experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer?s Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer?s Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support. Results: We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9%) and White (126/140, 90%). Our findings show that the behavior of accessing any online community was significantly associated with participants? belief in the value of online peer support (P=.006). Moreover, of the 40 non?online community caregivers, 33 (83%) had a belief score above 24?the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10%) and having insufficient online information?searching skills (9/140, 6.4%). Conclusions: Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or online information?searching skills. UR - https://aging.jmir.org/2024/1/e55169 UR - http://dx.doi.org/10.2196/55169 ID - info:doi/10.2196/55169 ER - TY - JOUR AU - Xu, Yucan AU - Chan, Shaunlyn Christian AU - Chan, Evangeline AU - Chen, Junyou AU - Cheung, Florence AU - Xu, Zhongzhi AU - Liu, Joyce AU - Yip, Fai Paul Siu PY - 2024/5/30 TI - Tracking and Profiling Repeated Users Over Time in Text-Based Counseling: Longitudinal Observational Study With Hierarchical Clustering JO - J Med Internet Res SP - e50976 VL - 26 KW - web-based counseling KW - text-based counseling KW - repeated users KW - frequent users KW - hierarchical clustering KW - service effectiveness KW - risk profiling KW - psychological profiles KW - psycholinguistic analysis N2 - Background: Due to their accessibility and anonymity, web-based counseling services are expanding at an unprecedented rate. One of the most prominent challenges such services face is repeated users, who represent a small fraction of total users but consume significant resources by continually returning to the system and reiterating the same narrative and issues. A deeper understanding of repeated users and tailoring interventions may help improve service efficiency and effectiveness. Previous studies on repeated users were mainly on telephone counseling, and the classification of repeated users tended to be arbitrary and failed to capture the heterogeneity in this group of users. Objective: In this study, we aimed to develop a systematic method to profile repeated users and to understand what drives their use of the service. By doing so, we aimed to provide insight and practical implications that can inform the provision of service catering to different types of users and improve service effectiveness. Methods: We extracted session data from 29,400 users from a free 24/7 web-based counseling service from 2018 to 2021. To systematically investigate the heterogeneity of repeated users, hierarchical clustering was used to classify the users based on 3 indicators of service use behaviors, including the duration of their user journey, use frequency, and intensity. We then compared the psychological profile of the identified subgroups including their suicide risks and primary concerns to gain insights into the factors driving their patterns of service use. Results: Three clusters of repeated users with clear psychological profiles were detected: episodic, intermittent, and persistent-intensive users. Generally, compared with one-time users, repeated users showed higher suicide risks and more complicated backgrounds, including more severe presenting issues such as suicide or self-harm, bullying, and addictive behaviors. Higher frequency and intensity of service use were also associated with elevated suicide risk levels and a higher proportion of users citing mental disorders as their primary concerns. Conclusions: This study presents a systematic method of identifying and classifying repeated users in web-based counseling services. The proposed bottom-up clustering method identified 3 subgroups of repeated users with distinct service behaviors and psychological profiles. The findings can facilitate frontline personnel in delivering more efficient interventions and the proposed method can also be meaningful to a wider range of services in improving service provision, resource allocation, and service effectiveness. UR - https://www.jmir.org/2024/1/e50976 UR - http://dx.doi.org/10.2196/50976 UR - http://www.ncbi.nlm.nih.gov/pubmed/38815258 ID - info:doi/10.2196/50976 ER - TY - JOUR AU - Tabira, Kento AU - Oguma, Yuko AU - Yoshihara, Shota AU - Shibuya, Megumi AU - Nakamura, Manabu AU - Doihara, Natsue AU - Hirata, Akihiro AU - Manabe, Tomoki PY - 2024/5/30 TI - Digital Peer-Supported App Intervention to Promote Physical Activity Among Community-Dwelling Older Adults: Nonrandomized Controlled Trial JO - JMIR Aging SP - e56184 VL - 7 KW - physical activity KW - physical function KW - gerontology KW - geriatric KW - geriatrics KW - older adult KW - older adults KW - elder KW - elderly KW - older person KW - older people KW - ageing KW - aging KW - aged KW - digital peer support app KW - mHealth KW - mobile health KW - app KW - apps KW - application KW - applications KW - eHealth KW - peer support KW - exercise KW - mobile phone N2 - Background: The use of mobile apps has promoted physical activity levels. Recently, with an increasing number of older adults accessing the internet, app-based interventions may be feasible in older populations. Peer support?based interventions have become a common method for promoting health-related behavior change. To our knowledge, the feasibility of using digital peer support apps (DPSAs) to increase physical activity among older adults and its impact on physical activity and physical function have not been investigated. Objective: This study aims to assess the feasibility of using DPSAs in older adults and to assess changes in physical activity and physical function in DPSA users. Methods: We conducted a nonrandomized controlled trial of older adults aged ?65 years. We recruited participants for 2 distinct 12-week programs designed to increase physical activity. Participants could choose between an intervention group (app program and exercise instruction) or a control group (exercise instruction only). DPSA creates a group chat for up to 5 people with a common goal, and participants anonymously post to each other in the group. Once a day, participants posted a set of their step counts, photos, and comments on a group chat box. The intervention group used the DPSA after receiving 2 face-to-face lectures on its use. The participants were characterized using questionnaires, accelerometers, and physical function assessments. The feasibility of the DPSA was assessed using retention and adherence rates. Physical activity was assessed using accelerometers to measure the daily step count, light intensity physical activity, moderate to vigorous intensity physical activity (MVPA), and sedentary behavior. Physical function was assessed using grip strength and the 30-second chair-stand test. Results: The participants in the intervention group were more frequent users of apps, were more familiar with information and communication technology, and had a higher baseline physical activity level. The retention and adherence rates for the DPSA intervention were 88% (36/41) and 87.7%, respectively, indicating good feasibility. Participants in the intervention group increased their step count by at least 1000 steps and their MVPA by at least 10 minutes using the DPSA. There was a significant difference in the interaction between groups and intervention time points in the daily step count and MVPA (step count, P=.04; duration of MVPA, P=.02). The DPSA increased physical activity, especially in older adults with low baseline physical activity levels. Conclusions: The feasibility of DPSA was found to be good, with the intervention group showing increases in daily steps and MVPA. The effects of DPSA on step count, physical activity, and physical function in older adults with low baseline physical activity should be investigated using randomized controlled trials. UR - https://aging.jmir.org/2024/1/e56184 UR - http://dx.doi.org/10.2196/56184 UR - http://www.ncbi.nlm.nih.gov/pubmed/38814686 ID - info:doi/10.2196/56184 ER - TY - JOUR AU - Ma, Yanan AU - Law, Kate AU - Hassan, Lamiece AU - Nenadic, Goran AU - van der Veer, N. Sabine PY - 2024/5/29 TI - Experiences and Views of Young People and Health Care Professionals of Using Social Media to Self-Manage Type 1 Diabetes Mellitus: Thematic Synthesis of Qualitative Studies JO - JMIR Pediatr Parent SP - e56919 VL - 7 KW - adolescents KW - health care professionals KW - social media KW - thematic synthesis KW - type 1 diabetes KW - type 1 diabetes mellitus KW - T1DM KW - young people N2 - Background: Social media have shown the potential to support type 1 diabetes self-management by providing informational, emotional, and peer-to-peer support. However, the perceptions of young people and health care professionals? (HCPs) toward the use of social media for type 1 diabetes self-management have not been systematically reviewed. Objective: The aim of this study is to explore and summarize the experiences and views of young people with type 1 diabetes and their HCPs on using social media for self-management across qualitative findings. Methods: We searched MEDLINE, Embase, PsycINFO, and CINAHL from 2012 to 2023 using Medical Subject Heading terms and text words related to type 1 diabetes and social media. We screened and selected the studies according to the inclusion and exclusion criteria. We quality appraised and characterized the included studies and conducted a thematic synthesis. Results: We included 11 studies in our synthesis. A total of 9 of them were qualitative and 2 were mixed methods studies. Ten focused on young people with type 1 diabetes and 1 on HCPs. All used content analysis and were of moderate to high quality. Thirteen descriptive themes were yielded by our thematic synthesis, contributing to five analytic themes: (1) differences in how young people interact with social media, (2) characteristics of social media platforms that influence their use and uptake for type 1 diabetes self-management, (3) social media as a source of information, (4) impact on young people?s coping and emotional well-being, and (5) impact on support from and relationships with HCPs and services. Conclusions: The synthesis suggests that we should consider leveraging social media?s peer support capabilities to augment the traditional services for young people with type 1 diabetes. However, the patients may have privacy concerns about HCPs? involvement in their online activities. This warrants an update of existing guidelines to help young people use social media safely for self-managing their diabetes. UR - https://pediatrics.jmir.org/2024/1/e56919 UR - http://dx.doi.org/10.2196/56919 UR - http://www.ncbi.nlm.nih.gov/pubmed/38809591 ID - info:doi/10.2196/56919 ER - TY - JOUR AU - Collins-Pisano, Caroline AU - Leggett, N. Amanda AU - Gambee, David AU - Fortuna, L. Karen PY - 2024/5/27 TI - Usability, Acceptability, and Preliminary Effectiveness of a Peer-Delivered and Technology-Supported Mental Health Intervention for Family Caregivers of People With Dementia: Field Usability Study JO - JMIR Hum Factors SP - e41202 VL - 11 KW - family caregivers KW - dementia KW - peer support KW - technology KW - mobile phone N2 - Background: Family caregivers of people with dementia are critical to the quality of life of care recipients and the sustainability of health care systems but face an increased risk of emotional distress and negative physical and mental health outcomes. Objective: The purpose of this study was to examine the usability, acceptability, and preliminary effectiveness of a technology-based and caregiver-delivered peer support program, the Caregiver Remote Education and Support (CARES) smartphone or tablet app. Methods: A total of 9 adult family caregivers of people with dementia received the CARES intervention, and 3 former family caregivers of people with dementia were trained to deliver it. Quantitative data were collected at baseline and at the end of the 2-week field usability study. Qualitative data were also collected at the end of the 2-week field usability study. Results: The field usability study demonstrated that a 2-week peer-delivered and technology-supported mental health intervention designed to improve burden, stress, and strain levels was experienced by former and current family caregivers of people with dementia as acceptable. Current family caregivers rated CARES as above average in usability, whereas the caregiver peer supporters rated CARES as marginally usable. CARES was associated with non?statistically significant improvements in burden, stress, and strain levels. Conclusions: This field usability study demonstrated that it is possible to train former family caregivers of people with dementia to use technology to deliver a mental health intervention to current family caregivers of people with dementia. Future studies would benefit from a longer trial; a larger sample size; a randomized controlled design; and a control of covariables such as stages of dementia, years providing care, and severity of dementia symptoms. UR - https://humanfactors.jmir.org/2024/1/e41202 UR - http://dx.doi.org/10.2196/41202 UR - http://www.ncbi.nlm.nih.gov/pubmed/38801660 ID - info:doi/10.2196/41202 ER - TY - JOUR AU - Li, Xiancheng AU - Gill, Aneet AU - Panzarasa, Pietro AU - Bestwick, Jonathan AU - Schrag, Anette AU - Noyce, Alastair AU - De Simoni, Anna PY - 2024/5/24 TI - Web Application to Enable Online Social Interactions in a Parkinson Disease Risk Cohort: Feasibility Study and Social Network Analysis JO - JMIR Form Res SP - e51977 VL - 8 KW - pilot studies KW - network analysis KW - Parkinson disease KW - risk factors KW - risk KW - risk cohort KW - social interaction KW - development KW - neurodegenerative disease KW - neurodegenerative KW - United Kingdom KW - feasibility KW - design KW - pilot KW - engagement KW - users KW - online forum KW - online network KW - online KW - regression analysis N2 - Background: There is evidence that social interaction has an inverse association with the development of neurodegenerative diseases. PREDICT-Parkinson Disease (PREDICT-PD) is an online UK cohort study that stratifies participants for risk of future Parkinson disease (PD). Objective: This study aims to explore the methodological approach and feasibility of assessing the digital social characteristics of people at risk of developing PD and their social capital within the PREDICT-PD platform, making hypotheses about the relationship between web-based social engagement and potential predictive risk indicators of PD. Methods: A web-based application was built to enable social interaction through the PREDICT-PD portal. Feedback from existing members of the cohort was sought and informed the design of the pilot. Dedicated staff used weekly engagement activities, consisting of PD-related research, facts, and queries, to stimulate discussion. Data were collected by the hosting platform. We examined the pattern of connections generated over time through the cumulative number of posts and replies and ego networks using social network analysis. We used network metrics to describe the bonding, bridging, and linking of social capital among participants on the platform. Relevant demographic data and Parkinson risk scores (expressed as an odd 1:x) were analyzed using descriptive statistics. Regression analysis was conducted to estimate the relationship between risk scores (after log transformation) and network measures. Results: Overall, 219 participants took part in a 4-month pilot forum embedded in the study website. In it, 200 people (n=80, 40% male and n=113, 57% female) connected in a large group, where most pairs of users could reach one another either directly or indirectly through other users. A total of 59% (20/34) of discussions were spontaneously started by participants. Participation was asynchronous, with some individuals acting as ?brokers? between groups of discussions. As more participants joined the forum and connected to one another through online posts, distinct groups of connected users started to emerge. This pilot showed that a forum application within the cohort web platform was feasible and acceptable and fostered digital social interaction. Matching participants? web-based social engagement with previously collected data at individual level in the PREDICT-PD study was feasible, showing potential for future analyses correlating online network characteristics with the risk of PD over time, as well as testing digital social engagement as an intervention to modify the risk of developing neurodegenerative diseases. Conclusions: The results from the pilot suggest that an online forum can serve as an intervention to enhance social connectedness and investigate whether patterns of online engagement can impact the risk of developing PD through long-term follow-up. This highlights the potential of leveraging online platforms to study the role of social capital in moderating PD risk and underscores the feasibility of such approaches in future research or interventions. UR - https://formative.jmir.org/2024/1/e51977 UR - http://dx.doi.org/10.2196/51977 UR - http://www.ncbi.nlm.nih.gov/pubmed/38788211 ID - info:doi/10.2196/51977 ER - TY - JOUR AU - Chalker, A. Samantha AU - Serafez, Jesus AU - Imai, Yuki AU - Stinchcomb, Jeffrey AU - Mendez, Estefany AU - Depp, A. Colin AU - Twamley, W. Elizabeth AU - Fortuna, L. Karen AU - Goodman, Marianne AU - Chinman, Matthew PY - 2024/5/23 TI - Suicide Prevention by Peers Offering Recovery Tactics (SUPPORT) for US Veterans With Serious Mental Illness: Community Engagement Approach JO - J Particip Med SP - e56204 VL - 16 KW - suicide prevention KW - advisor KW - veterans KW - recovery KW - community KW - peer specialist KW - peer support KW - serious mental illness KW - participatory design KW - community engagement KW - lived experience N2 - Background: Peer specialists are hired, trained, and accredited to share their lived experience of psychiatric illness to support other similar individuals through the recovery process. There are limited data on the role of peer specialists in suicide prevention, including their role in intervention development. Objective: To better understand peer specialists within the Veterans Health Administration (VHA), we followed partnership community engagement and a formative research approach to intervention development to (1) identify barriers, facilitators, and perceptions of VHA peer specialists delivering a suicide prevention service and (2) develop and refine an intervention curriculum based on an evidence-informed preliminary intervention framework for veterans with serious mental illness (SMI). Methods: Following the community engagement approach, VHA local and national peer support and mental health leaders, veterans with SMI, and veteran peer specialists met to develop a preliminary intervention framework. Next, VHA peer specialist advisors (n=5) and scientific advisors (n=6) participated in respective advisory boards and met every 2-4 months for more than 18 months via videoconferencing to address study objectives. The process used was a reflexive thematic analysis after each advisory board meeting. Results: The themes discussed included (1) the desire for suicide prevention training for peer specialists, (2) determining the role of VHA peer specialists in suicide prevention, (3) integration of recovery themes in suicide prevention, and (4) difficulties using safety plans during a crisis. There were no discrepancies in thematic content between advisory boards. Advisor input led to the development of Suicide Prevention by Peers Offering Recovery Tactics (SUPPORT). SUPPORT includes training in general suicide prevention and a peer specialist?delivered intervention for veterans with SMI at an increased suicide risk. This training aims to increase the competence and confidence of peer specialists in suicide prevention and the intervention supports veterans with SMI at an increased suicide risk through their recovery process. Conclusions: This paper intends to document the procedures taken in suicide prevention intervention development, specifically those led by peer specialists, and to be a source for future research developing and evaluating similar interventions. Trial Registration: ClinicalTrials.gov NCT05537376; https://classic.clinicaltrials.gov/ct2/show/NCT05537376 UR - https://jopm.jmir.org/2024/1/e56204 UR - http://dx.doi.org/10.2196/56204 UR - http://www.ncbi.nlm.nih.gov/pubmed/38781010 ID - info:doi/10.2196/56204 ER - TY - JOUR AU - Brown, Katherine AU - Lucassen, G. Mathijs F. AU - Núñez-García, Alicia AU - Rimes, A. Katharine AU - Wallace, M. Louise AU - Samra, Rajvinder PY - 2024/5/21 TI - A Web-Based Intervention to Support the Mental Well-Being of Sexual and Gender Minority Young People: Mixed Methods Co-Design of Oneself JO - JMIR Form Res SP - e54586 VL - 8 KW - sexual minority KW - gender minority KW - lesbian, gay, bisexual, transgender, queer KW - LGBTQ+ KW - mental well-being KW - support KW - intervention KW - resilience KW - digital KW - co-design KW - sexual and gender minority youth KW - SGMY KW - mobile phone N2 - Background: Sexual and gender minority youth are at greater risk of compromised mental health than their heterosexual and cisgender peers. This is considered to be due to an increased burden of stigma, discrimination, or bullying resulting in a heightened experience of daily stress. Given the increasing digital accessibility and a strong preference for web-based support among sexual and gender minority youth, digital interventions are a key means to provide support to maintain their well-being. Objective: This paper aims to explicate the co-design processes and underpinning logic of Oneself, a bespoke web-based intervention for sexual and gender minority youth. Methods: This study followed a 6-stage process set out by Hagen et al (identify, define, position, concept, create, and use), incorporating a systematic scoping review of existing evidence, focus groups with 4 stakeholder groups (ie, sexual and gender minority youth, professionals who directly support them, parents, and UK public health service commissioners), a series of co-design workshops and web-based consultations with sexual and gender minority youth, the appointment of a digital development company, and young adult sexual and gender minority contributors to create content grounded in authentic experiences. Results: Oneself features a welcome and home page, including a free accessible to all animation explaining the importance of using appropriate pronouns and the opportunity to create a user account and log-in to access further free content. Creating an account provides an opportunity (for the user and the research team) to record engagement, assess users? well-being, and track progress through the available content. There are three sections of content in Oneself focused on the priority topics identified through co-design: (1) coming out and doing so safely; (2) managing school, including homophobic, biphobic, or transphobic bullying or similar; and (3) dealing with parents and families, especially unsupportive family members, including parents or caregivers. Oneself?s content focuses on identifying these as topic areas and providing potential resources to assist sexual and gender minority youth in coping with these areas. For instance, Oneself drew on therapeutic concepts such as cognitive reframing, stress reduction, and problem-solving techniques. There is also a section containing relaxation exercises, a section with links to other recommended support and resources, and a downloads section with more detailed techniques and strategies for improving well-being. Conclusions: This study contributes to research by opening up the black box of intervention development. It shows how Oneself is underpinned by a logic that can support future development and evaluation and includes diverse co-designers. More interactive techniques to support well-being would be beneficial for further development. Additional content specific to a wider range of intersecting identities (such as care-experienced Asian sexual and gender minority youth from a minority faith background) would also be beneficial in future Oneself developments. International Registered Report Identifier (IRRID): RR2-10.2196/31036 UR - https://formative.jmir.org/2024/1/e54586 UR - http://dx.doi.org/10.2196/54586 UR - http://www.ncbi.nlm.nih.gov/pubmed/38772025 ID - info:doi/10.2196/54586 ER - TY - JOUR AU - Bauer, Brian AU - Norel, Raquel AU - Leow, Alex AU - Rached, Abi Zad AU - Wen, Bo AU - Cecchi, Guillermo PY - 2024/5/16 TI - Using Large Language Models to Understand Suicidality in a Social Media?Based Taxonomy of Mental Health Disorders: Linguistic Analysis of Reddit Posts JO - JMIR Ment Health SP - e57234 VL - 11 KW - natural language processing KW - explainable AI KW - suicide KW - mental health disorders KW - mental health disorder KW - mental health KW - social media KW - online discussions KW - online KW - large language model KW - LLM KW - downstream analyses KW - trauma KW - stress KW - depression KW - anxiety KW - AI KW - artificial intelligence KW - explainable artificial intelligence KW - web-based discussions N2 - Background: Rates of suicide have increased by over 35% since 1999. Despite concerted efforts, our ability to predict, explain, or treat suicide risk has not significantly improved over the past 50 years. Objective: The aim of this study was to use large language models to understand natural language use during public web-based discussions (on Reddit) around topics related to suicidality. Methods: We used large language model?based sentence embedding to extract the latent linguistic dimensions of user postings derived from several mental health?related subreddits, with a focus on suicidality. We then applied dimensionality reduction to these sentence embeddings, allowing them to be summarized and visualized in a lower-dimensional Euclidean space for further downstream analyses. We analyzed 2.9 million posts extracted from 30 subreddits, including r/SuicideWatch, between October 1 and December 31, 2022, and the same period in 2010. Results: Our results showed that, in line with existing theories of suicide, posters in the suicidality community (r/SuicideWatch) predominantly wrote about feelings of disconnection, burdensomeness, hopeless, desperation, resignation, and trauma. Further, we identified distinct latent linguistic dimensions (well-being, seeking support, and severity of distress) among all mental health subreddits, and many of the resulting subreddit clusters were in line with a statistically driven diagnostic classification system?namely, the Hierarchical Taxonomy of Psychopathology (HiTOP)?by mapping onto the proposed superspectra. Conclusions: Overall, our findings provide data-driven support for several language-based theories of suicide, as well as dimensional classification systems for mental health disorders. Ultimately, this novel combination of natural language processing techniques can assist researchers in gaining deeper insights about emotions and experiences shared on the web and may aid in the validation and refutation of different mental health theories. UR - https://mental.jmir.org/2024/1/e57234 UR - http://dx.doi.org/10.2196/57234 ID - info:doi/10.2196/57234 ER - TY - JOUR AU - Schwab-Reese, Laura AU - Short, Caitlyn AU - Jacobs, Larel AU - Fingerman, Michelle PY - 2024/5/15 TI - Rapport Building in Written Crisis Services: Qualitative Content Analysis JO - J Med Internet Res SP - e42049 VL - 26 KW - empathy KW - crisis hotline KW - child maltreatment KW - text hotline KW - chat hotline KW - telehealth KW - digital empathy KW - counseling KW - child abuse KW - family violence KW - crisis KW - hotline KW - chat KW - tele KW - emotional dynamics KW - therapeutic relationships KW - therapy KW - content analysis KW - text KW - inductive KW - deductive KW - emotion KW - affect KW - emotional dynamic KW - counseling psychology N2 - Background: Building therapeutic relationships and social presence are challenging in digital services and maybe even more difficult in written services. Despite these difficulties, in-person care may not be feasible or accessible in all situations. Objective: This study aims to categorize crisis counselors? efforts to build rapport in written conversations by using deidentified conversation transcripts from the text and chat arms of the National Child Abuse Hotline. Using these categories, we identify the common characteristics of successful conversations. We defined success as conversations where help-seekers reported the hotline was a good way to seek help and that they were a lot more hopeful, a lot more informed, a lot more prepared to address the situation, and experiencing less stress, as reported by help-seekers. Methods: The sample consisted of transcripts from 314 purposely selected conversations from of the 1153 text and chat conversations during July 2020. Hotline users answered a preconversation survey (ie, demographics) and a postconversation survey (ie, their perceptions of the conversation). We used qualitative content analysis to process the conversations. Results: Active listening skills, including asking questions, paraphrasing, reflecting feelings, and interpreting situations, were commonly used by counselors. Validation, unconditional positive regard, and evaluation-based language, such as praise and apologies, were also often used. Compared with less successful conversations, successful conversations tended to include fewer statements that attend to the emotional dynamics. There were qualitative differences in how the counselors applied these approaches. Generally, crisis counselors in positive conversations tended to be more specific and tailor their comments to the situation. Conclusions: Building therapeutic relationships and social presence are essential to digital interventions involving mental health professionals. Prior research demonstrates that they can be challenging to develop in written conversations. Our work demonstrates characteristics associated with successful conversations that could be adopted in other written help-seeking interventions. UR - https://www.jmir.org/2024/1/e42049 UR - http://dx.doi.org/10.2196/42049 UR - http://www.ncbi.nlm.nih.gov/pubmed/38748472 ID - info:doi/10.2196/42049 ER - TY - JOUR AU - Miller, Soederberg Lisa M. AU - Callegari, A. Rachel AU - Abah, Theresa AU - Fann, Helen PY - 2024/5/14 TI - Digital Literacy Training for Low-Income Older Adults Through Undergraduate Community-Engaged Learning: Single-Group Pretest-Posttest Study JO - JMIR Aging SP - e51675 VL - 7 KW - community-engaged learning KW - digital divide KW - underserved older adults KW - digital literacy training KW - intergenerational programs N2 - Background: Digital technology is a social determinant of health that affects older people?s ability to engage in health maintenance and disease prevention activities; connect with family and friends; and, more generally, age in place. Unfortunately, disparities in technology adoption and use exist among older adults compared with other age groups and are even greater among low-income older adults. Objective: In this study, we described the development and implementation of a digital literacy training program designed with the dual goals of training low-income older adults in the community and teaching students about aging using a community-engaged learning (CEL) approach. Methods: The training program was embedded within a 10-week CEL course that paired undergraduates (N=27) with low-income older adults (n=18) for 8 weeks of digital literacy training. Older adults and students met weekly at the local senior center for the training. Students also met in the classroom weekly to learn about aging and how to use design thinking to train their older adult trainees. Both older adults and students completed pre- and posttraining surveys. Results: Older adults demonstrated increased digital literacy skills and confidence in the use of digital technology. Loneliness did not change from pre to postassessment measurements; however, older adults showed improvements in their attitudes toward their own aging and expressed enthusiasm for the training program. Although students? fear of older adults did not change, their comfort in working with older adults increased. Importantly, older adults and students expressed positive feelings about the trainee-trainer relationship that they formed during the training program. Conclusions: A CEL approach that brings together students and low-income older adults in the community has a strong potential to reduce the digital divide experienced by underserved older adults. Additional work is needed to explore the efficacy and scalability of this approach in terms of older adults? digital literacy as well as other potential benefits to both older and younger adults. UR - https://aging.jmir.org/2024/1/e51675 UR - http://dx.doi.org/10.2196/51675 UR - http://www.ncbi.nlm.nih.gov/pubmed/38599620 ID - info:doi/10.2196/51675 ER - TY - JOUR AU - Radó, Nóra AU - Békási, Sándor AU - Gy?rffy, Zsuzsa PY - 2024/5/14 TI - Health Technology Access and Peer Support Among Digitally Engaged People Experiencing Homelessness: Qualitative Study JO - JMIR Hum Factors SP - e55415 VL - 11 KW - digital health KW - homelessness KW - digital technology KW - internet KW - access KW - health equity N2 - Background: Although the effects of digital health are receiving wide scientific attention, very little is known about the characteristics of digitally engaged people experiencing homelessness, especially in Central and Eastern Europe. Our previous research revealed a considerable level of internet use in the homeless population of Budapest, Hungary, for general purposes (350/662, 52.9%) and medical purposes (229/664, 34.6%). Moreover, a digitally engaged subgroup was identified (129/662, 19.5%). Objective: The aim of this exploratory study was to map out the resources, attitudes, and behaviors of digitally engaged homeless individuals in relation to digital technology to set the basis for potential health policy interventions, which will enable better access to health services through strengthening of the digital components of the existing health care system. Methods: Between August 18, 2022, and October 27, 2022, a total of 12 in-depth semistructured interviews were conducted in 4 homeless shelters in Budapest, Hungary. Upon analysis by 3 independent evaluators, 2 interviews were excluded. The interviewees were chosen based on purposive sampling with predefined inclusion criteria. Thematic analysis of the transcripts was conducted. Results: In the thematic analysis, 4 main themes (attitude, access, usage patterns, and solutions for usage problems) emerged. Health-related technology use mostly appeared in health information?seeking behavior. Online search for prescribed medications (5 interviews), active ingredients of medications (4 interviews), medicinal herbs believed to replace certain pills (2 interviews) or foods, and natural materials (1 interview) were mentioned. Moreover, mobile health app use (3 interviews) was reported. The intention to circumvent or check on mainstream health care solutions was mainly associated with previous negative experiences in the health care system. Several gaps in the daily use of technology were identified by the interviewees; however, more than half of the interviewees (6/10) turned out to be contact points for their peers for digital problem-solving or basic digital literacy skill enhancement in the homeless shelters. Furthermore, a lack of institutional support or special programs targeting senior clients was noted. Conclusions: Digitally engaged homeless individuals might become mediators between their peers and comprehensive digital health programs. They have the trust of their peers, can recognize and harness the benefits of digital technology, and are able to provide meaningful help in technology- and usage-related issues through experience. Digital health services have great promise in community shelters for managing and preventing health issues, and digitally engaged individuals might be important for the success of such services. UR - https://humanfactors.jmir.org/2024/1/e55415 UR - http://dx.doi.org/10.2196/55415 UR - http://www.ncbi.nlm.nih.gov/pubmed/38743937 ID - info:doi/10.2196/55415 ER - TY - JOUR AU - Zhang, Zhouqing AU - Liew, Kongmeng AU - Kuijer, Roeline AU - She, Jou Wan AU - Yada, Shuntaro AU - Wakamiya, Shoko AU - Aramaki, Eiji PY - 2024/5/9 TI - Differing Content and Language Based on Poster-Patient Relationships on the Chinese Social Media Platform Weibo: Text Classification, Sentiment Analysis, and Topic Modeling of Posts on Breast Cancer JO - JMIR Cancer SP - e51332 VL - 10 KW - cancer KW - social media KW - text classification KW - topic modeling KW - sentiment analysis KW - Weibo N2 - Background: Breast cancer affects the lives of not only those diagnosed but also the people around them. Many of those affected share their experiences on social media. However, these narratives may differ according to who the poster is and what their relationship with the patient is; a patient posting about their experiences may post different content from someone whose friends or family has breast cancer. Weibo is 1 of the most popular social media platforms in China, and breast cancer?related posts are frequently found there. Objective: With the goal of understanding the different experiences of those affected by breast cancer in China, we aimed to explore how content and language used in relevant posts differ according to who the poster is and what their relationship with the patient is and whether there are differences in emotional expression and topic content if the patient is the poster themselves or a friend, family member, relative, or acquaintance. Methods: We used Weibo as a resource to examine how posts differ according to the different poster-patient relationships. We collected a total of 10,322 relevant Weibo posts. Using a 2-step analysis method, we fine-tuned 2 Chinese Robustly Optimized Bidirectional Encoder Representations from Transformers (BERT) Pretraining Approach models on this data set with annotated poster-patient relationships. These models were lined in sequence, first a binary classifier (no_patient or patient) and then a multiclass classifier (post_user, family_members, friends_relatives, acquaintances, heard_relation), to classify poster-patient relationships. Next, we used the Linguistic Inquiry and Word Count lexicon to conduct sentiment analysis from 5 emotion categories (positive and negative emotions, anger, sadness, and anxiety), followed by topic modeling (BERTopic). Results: Our binary model (F1-score=0.92) and multiclass model (F1-score=0.83) were largely able to classify poster-patient relationships accurately. Subsequent sentiment analysis showed significant differences in emotion categories across all poster-patient relationships. Notably, negative emotions and anger were higher for the ?no_patient? class, but sadness and anxiety were higher for the ?family_members? class. Focusing on the top 30 topics, we also noted that topics on fears and anger toward cancer were higher in the ?no_patient? class, but topics on cancer treatment were higher in the ?family_members? class. Conclusions: Chinese users post different types of content, depending on the poster- poster-patient relationships. If the patient is family, posts are sadder and more anxious but also contain more content on treatments. However, if no patient is detected, posts show higher levels of anger. We think that these may stem from rants from posters, which may help with emotion regulation and gathering social support. UR - https://cancer.jmir.org/2024/1/e51332 UR - http://dx.doi.org/10.2196/51332 UR - http://www.ncbi.nlm.nih.gov/pubmed/38723250 ID - info:doi/10.2196/51332 ER - TY - JOUR AU - Marshall, Paul AU - Booth, Millissa AU - Coole, Matthew AU - Fothergill, Lauren AU - Glossop, Zoe AU - Haines, Jade AU - Harding, Andrew AU - Johnston, Rose AU - Jones, Steven AU - Lodge, Christopher AU - Machin, Karen AU - Meacock, Rachel AU - Nielson, Kristi AU - Puddephatt, Jo-Anne AU - Rakic, Tamara AU - Rayson, Paul AU - Robinson, Heather AU - Rycroft-Malone, Jo AU - Shryane, Nick AU - Swithenbank, Zoe AU - Wise, Sara AU - Lobban, Fiona PY - 2024/5/9 TI - Understanding the Impacts of Online Mental Health Peer Support Forums: Realist Synthesis JO - JMIR Ment Health SP - e55750 VL - 11 KW - digital mental health KW - peer-to-peer support KW - social networking KW - moderation KW - systematic review N2 - Background: Online forums are widely used for mental health peer support. However, evidence of their safety and effectiveness is mixed. Further research focused on articulating the contexts in which positive and negative impacts emerge from forum use is required to inform innovations in implementation. Objective: This study aimed to develop a realist program theory to explain the impacts of online mental health peer support forums on users. Methods: We conducted a realist synthesis of literature published between 2019 and 2023 and 18 stakeholder interviews with forum staff. Results: Synthesis of 102 evidence sources and 18 interviews produced an overarching program theory comprising 22 context-mechanism-outcome configurations. Findings indicate that users? perceptions of psychological safety and the personal relevance of forum content are foundational to ongoing engagement. Safe and active forums that provide convenient access to information and advice can lead to improvements in mental health self-efficacy. Within the context of welcoming and nonjudgmental communities, users may benefit from the opportunity to explore personal difficulties with peers, experience reduced isolation and normalization of mental health experiences, and engage in mutual encouragement. The program theory highlights the vital role of moderators in creating facilitative online spaces, stimulating community engagement, and limiting access to distressing content. A key challenge for organizations that host mental health forums lies in balancing forum openness and anonymity with the need to enforce rules, such as restrictions on what users can discuss, to promote community safety. Conclusions: This is the first realist synthesis of online mental health peer support forums. The novel program theory highlights how successful implementation depends on establishing protocols for enhancing safety and strategies for maintaining user engagement to promote forum sustainability. Trial Registration: PROSPERO CRD42022352528; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=352528 UR - https://mental.jmir.org/2024/1/e55750 UR - http://dx.doi.org/10.2196/55750 UR - http://www.ncbi.nlm.nih.gov/pubmed/38722680 ID - info:doi/10.2196/55750 ER - TY - JOUR AU - Xue, Jia AU - Shier, L. Micheal AU - Chen, Junxiang AU - Wang, Yirun AU - Zheng, Chengda AU - Chen, Chen PY - 2024/5/8 TI - A Typology of Social Media Use by Human Service Nonprofits: Mixed Methods Study JO - J Med Internet Res SP - e51698 VL - 26 KW - human service nonprofits KW - sexual assault support centers KW - Canada KW - typology KW - theory KW - Twitter KW - machine learning KW - social media KW - tweet KW - tweets KW - nonprofit KW - nonprofits KW - crisis KW - sexual assault KW - sexual violence KW - sexual abuse KW - support center KW - support centers KW - communication KW - communications KW - organization KW - organizations KW - organizational KW - sentiment analysis KW - business KW - marketing N2 - Background: Nonprofit organizations are increasingly using social media to improve their communication strategies with the broader population. However, within the domain of human service nonprofits, there is hesitancy to fully use social media tools, and there is limited scope among organizational personnel in applying their potential beyond self-promotion and service advertisement. There is a pressing need for greater conceptual clarity to support education and training on the varied reasons for using social media to increase organizational outcomes. Objective: This study leverages the potential of Twitter (subsequently rebranded as X [X Corp]) to examine the online communication content within a sample (n=133) of nonprofit sexual assault (SA) centers in Canada. To achieve this, we developed a typology using a qualitative and supervised machine learning model for the automatic classification of tweets posted by these centers. Methods: Using a mixed methods approach that combines machine learning and qualitative analysis, we manually coded 10,809 tweets from 133 SA centers in Canada, spanning the period from March 2009 to March 2023. These manually labeled tweets were used as the training data set for the supervised machine learning process, which allowed us to classify 286,551 organizational tweets. The classification model based on supervised machine learning yielded satisfactory results, prompting the use of unsupervised machine learning to classify the topics within each thematic category and identify latent topics. The qualitative thematic analysis, in combination with topic modeling, provided a contextual understanding of each theme. Sentiment analysis was conducted to reveal the emotions conveyed in the tweets. We conducted validation of the model with 2 independent data sets. Results: Manual annotation of 10,809 tweets identified seven thematic categories: (1) community engagement, (2) organization administration, (3) public awareness, (4) political advocacy, (5) support for others, (6) partnerships, and (7) appreciation. Organization administration was the most frequent segment, and political advocacy and partnerships were the smallest segments. The supervised machine learning model achieved an accuracy of 63.4% in classifying tweets. The sentiment analysis revealed a prevalence of neutral sentiment across all categories. The emotion analysis indicated that fear was predominant, whereas joy was associated with the partnership and appreciation tweets. Topic modeling identified distinct themes within each category, providing valuable insights into the prevalent discussions surrounding SA and related issues. Conclusions: This research contributes an original theoretical model that sheds light on how human service nonprofits use social media to achieve their online organizational communication objectives across 7 thematic categories. The study advances our comprehension of social media use by nonprofits, presenting a comprehensive typology that captures the diverse communication objectives and contents of these organizations, which provide content to expand training and education for nonprofit leaders to connect and engage with the public, policy experts, other organizations, and potential service users. UR - https://www.jmir.org/2024/1/e51698 UR - http://dx.doi.org/10.2196/51698 UR - http://www.ncbi.nlm.nih.gov/pubmed/38718390 ID - info:doi/10.2196/51698 ER - TY - JOUR AU - O?Donnell, A. Elizabeth AU - Van Citters, D. Aricca AU - Khayal, S. Inas AU - Wilson, M. Matthew AU - Gustafson, David AU - Barnato, E. Amber AU - Buccellato, C. Andrea AU - Young, Colleen AU - Holthoff, M. Megan AU - Korsunskiy, Eugene AU - Tomlin, C. Stephanie AU - Cullinan, M. Amelia AU - Steinbaugh, C. Alexandra AU - Hinson, J. Jennifer AU - Johnson, R. Kristen AU - Williams, Andrew AU - Thomson, M. Ruth AU - Haines, M. Janet AU - Holmes, B. Anne AU - Bradley, D. Ann AU - Nelson, C. Eugene AU - Kirkland, B. Kathryn PY - 2024/5/8 TI - A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study JO - JMIR Hum Factors SP - e53194 VL - 11 KW - human-centered design KW - caregivers KW - care partners KW - serious illness KW - peer support KW - online support network KW - virtual network KW - online network KW - caregiver KW - unmet need KW - unmet needs KW - active care KW - bereaved care KW - bereavement KW - clinician KW - clinicians KW - function KW - functions KW - specification KW - information KW - emotional support KW - technical support KW - privacy protection KW - rural KW - viability KW - impact KW - engineering design KW - care provider KW - care providers KW - mortality KW - quality of life KW - tertiary care KW - caregiving N2 - Background: Care partners of people with serious illness experience significant challenges and unmet needs during the patient?s treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. Objective: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. Methods: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. Results: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. Conclusions: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network. UR - https://humanfactors.jmir.org/2024/1/e53194 UR - http://dx.doi.org/10.2196/53194 UR - http://www.ncbi.nlm.nih.gov/pubmed/38717809 ID - info:doi/10.2196/53194 ER - TY - JOUR AU - Branitsky, Alison AU - Longden, Eleanor AU - Bucci, Sandra AU - Morrison, P. Anthony AU - Varese, Filippo PY - 2024/5/3 TI - Group Cohesion and Necessary Adaptations in Online Hearing Voices Peer Support Groups: Qualitative Study With Group Facilitators JO - JMIR Form Res SP - e51694 VL - 8 KW - peer support KW - group cohesion KW - web-based delivery KW - hearing voices KW - Hearing Voices Movement KW - self-help groups N2 - Background: Face-to-face hearing voices peer support groups (HVGs), a survivor-led initiative that enables individuals who hear voices to engage with the support of peers, have a long-standing history in community settings. HVGs are premised on the notion that forming authentic, mutual relationships enables the exploration of one?s voice hearing experiences and, in turn, reduces subjective distress. As such, group cohesion is assumed to be a central mechanism of change in HVGs. The rise of digital mental health support, coupled with the COVID-19 pandemic, has resulted in many HVGs adapting to online delivery. However, to date no studies have examined the implementation of these online groups and the adaptations necessary to foster cohesion. Objective: This study aims to understand the experience of group cohesion among HVG facilitators in online groups compared with face-to-face groups. Specifically, we examined the ways in which the medium through which groups run (online or face-to-face) impacts group cohesion and how facilitators adapted HVGs to foster group cohesion online. Methods: Semistructured qualitative interviews were conducted with 11 facilitators with varied experience of facilitating online and face-to-face HVGs. Data were analyzed using reflexive thematic analysis. Results: The findings are organized into 3 themes and associated subthemes: nonverbal challenges to cohesion (lack of differentiation, transitional space, inability to see the whole picture, and expressions of empathy); discursive challenges to cohesion (topic-based conversation and depth of disclosure); and necessary adaptations for online groups (fostering shared experience and using the unique context to demonstrate investment in others). Despite challenges in both the setting and content of online groups, facilitators felt that group cohesion was still possible to achieve online but that it had to be facilitated intentionally. Conclusions: This study is the first to specifically investigate group cohesion in online HVGs. Participants noted numerous challenges to group cohesion when adapting groups to run online, including the unnaturally linear narrative flow of dialogue in online settings; lack of transitional spaces, and associated small talk before and after the session; ease of disengagement online; inhibited sharing; and absence of shared physical presence online. Although these challenges were significant, facilitators nevertheless emphasized that the benefits provided by the accessibility of online groups outweighed these challenges. Necessary adaptations for cultivating group cohesion online are outlined and include capitalizing on moments of humor and spontaneity, using group activities, encouraging information sharing between participants using the chat and screen-sharing features, and using objects from participants? environments to gain deeper insight into their subjective worlds. UR - https://formative.jmir.org/2024/1/e51694 UR - http://dx.doi.org/10.2196/51694 UR - http://www.ncbi.nlm.nih.gov/pubmed/38701439 ID - info:doi/10.2196/51694 ER - TY - JOUR AU - Gouy, Giulia AU - Attali, Luisa AU - Voillot, Paméla AU - Fournet, Patrick AU - Agostini, Aubert PY - 2024/5/2 TI - Experiences of Women With Medical Abortion Care Reflected in Social Media (VEILLE Study): Noninterventional Retrospective Exploratory Infodemiology Study JO - JMIR Infodemiology SP - e49335 VL - 4 KW - infodemiology KW - medical abortion KW - patient experience KW - real-world evidence KW - social media KW - abortion KW - women's health KW - reproduction KW - reproductive KW - obstetric KW - obstetrics KW - gynecology KW - gynecological KW - text mining KW - topic model KW - topic modeling KW - natural language processing KW - NLP N2 - Background: Abortion (also known as termination of pregnancy) is an essential element of women?s reproductive health care. Feedback from women who underwent medical termination of pregnancy about their experience is crucial to help practitioners identify women?s needs and develop necessary tools to improve the abortion care process. However, the collection of this feedback is quite challenging. Social media offer anonymity for women who share their abortion experience. Objective: This exploratory infodemiology study aimed to analyze, through French social media posts, personal medical symptoms and the different experiences and information dynamics associated with the medical abortion process. Methods: A retrospective study was performed by analyzing posts geolocated in France and published from January 1, 2017, to November 30, 2021. Posts were extracted from all French-language general and specialized publicly available web forums using specific keywords. Extracted messages were cleaned and pseudonymized. Automatic natural language processing methods were used to identify posts from women having experienced medical abortion. Biterm topic modeling was used to identify the main discussion themes and the Medical Dictionary for Regulatory Activities was used to identify medical terms. Encountered difficulties were explored using qualitative research methods until the saturation of concepts was reached. Results: Analysis of 5398 identified posts (3409 users) led to the identification of 9 major topics: personal experience (n=2413 posts, 44.7%), community support (n=1058, 19.6%), pain and bleeding (n=797, 14.8%), psychological experience (n=760, 14.1%), questioned efficacy (n=410, 7.6%), social pressure (n=373, 6.9%), positive experiences (n=257, 4.8%), menstrual cycle disorders (n=107, 2%), and reported inefficacy (n=104, 1.9%). Pain, which was mentioned in 1627 (30.1%) of the 5398 posts by 1024 (30.0%) of the 3409 users, was the most frequently reported medical term. Pain was considered severe to unbearable in 24.5% of the cases (399 of the 1627 posts). Lack of information was the most frequently reported difficulty during and after the process. Conclusions: Our findings suggest that French women used social media to share their experiences, offer and find support, and provide and receive information regarding medical abortion. Infodemiology appears to be a useful tool to obtain women?s feedback, therefore offering the opportunity to enhance care in women undergoing medical abortion. UR - https://infodemiology.jmir.org/2024/1/e49335 UR - http://dx.doi.org/10.2196/49335 UR - http://www.ncbi.nlm.nih.gov/pubmed/38696232 ID - info:doi/10.2196/49335 ER - TY - JOUR AU - Ng, Reuben AU - Indran, Nicole AU - Liu, Luyao PY - 2024/5/1 TI - Advocating for Older Adults in the Age of Social Media: Strategies to Achieve Peak Engagement on Twitter JO - JMIR Aging SP - e49608 VL - 7 KW - age advocacy KW - social media engagement KW - older adults KW - ageism KW - data science N2 - Background: Over the last decade, many organizations dedicated to serving the needs and interests of older adults have turned to social media platforms, such as Twitter, subsequently rebranded X, to improve the visibility of age-related issues. However, notwithstanding their growing digital presence and participation, minimal attention has been paid to the use of social media among these advocacy groups. To achieve policy change, advocacy organizations must first be able to engage and mobilize audiences. Objective: Our study aims to elucidate how different tweet features affect the time it takes for posts uploaded by age advocacy organizations to reach peak engagement. Methods: We collated 204,905 tweets from 53 age advocacy organizations posted over a 12-year period. The engagement score of each tweet was calculated by combining well-established metrics, namely likes, retweets, quote tweets, and replies. We ran Cox models with tweet features as predictors and time-to-peak engagement as the outcome. ?Peak engagement? (event) refers to engagement scores above the 75th percentile, and ?time? refers to months taken to reach peak engagement per tweet. Results: Approximately 1 in 2 tweets (n=103,068, 50.3%) had either no hashtags or just 1 hashtag. Around two-thirds (n=131,220, 64%) of the tweets included a URL. Visual information was highly underused, with most tweets not including GIFs (n=204,202, 99.7%), videos (n=199,800, 97.5%), or photos (n=143,844, 70.2%). Roughly half (n=101,470, 49.5%) of the tweets contained mentions and 9.3% (n=19,009) of tweets were replies. Only 4.5% (n=9285) of tweets were quote tweets. Most tweets were uploaded in the afternoon (n=86,004, 42%) and on a weekday (n=180,499, 88.1%). As hypothesized, features associated with peak engagement were the inclusion of visual elements like photos, which increased peak engagement by 3 times (P<.001), and the use of 3 or more hashtags (P<.001). Quote tweets increased engagement by 3 times (P<.001), as compared to regular tweets, controlling for account-level covariates. Tweets from organizations with a higher tweet volume were 40% less likely to reach peak engagement (P<.001). Conclusions: Social media as a networked platform has the potential to reach users on a global scale and at an exponential speed. Having uncovered the features that are more likely to reach peak engagement on Twitter, our study serves as an invaluable resource for age advocacy organizations in their movement to create a more age-inclusive world. UR - https://aging.jmir.org/2024/1/e49608 UR - http://dx.doi.org/10.2196/49608 ID - info:doi/10.2196/49608 ER - TY - JOUR AU - Weiß, Martin AU - Gründahl, Marthe AU - Jachnik, Annalena AU - Lampe, Caya Emilia AU - Malik, Ishitaa AU - Rittner, Lydia Heike AU - Sommer, Claudia AU - Hein, Grit PY - 2024/4/30 TI - The Effect of Everyday-Life Social Contact on Pain JO - J Med Internet Res SP - e53830 VL - 26 KW - social contact KW - pain KW - ecological momentary assessment UR - https://www.jmir.org/2024/1/e53830 UR - http://dx.doi.org/10.2196/53830 UR - http://www.ncbi.nlm.nih.gov/pubmed/38687594 ID - info:doi/10.2196/53830 ER - TY - JOUR AU - Cooper, Hal AU - Nadzri, Mohd Farah Zeehan AU - Vyas, Seema AU - Juhari, Rumaya AU - Ismail, Nellie AU - Arshat, Zarinah AU - Rajandiran, Durgesh AU - Markle, Laurie AU - Calderon, Francisco AU - Vallance, Inge AU - Melendez-Torres, J. G. AU - Facciolà, Chiara AU - Senesathith, Vanisa AU - Gardner, Frances AU - Lachman, M. Jamie PY - 2024/4/26 TI - A Hybrid Digital Parenting Program Delivered Within the Malaysian Preschool System: Protocol for a Feasibility Study of a Small-Scale Factorial Cluster Randomized Trial JO - JMIR Res Protoc SP - e55491 VL - 13 KW - parenting intervention KW - chatbot-led public health intervention KW - engagement KW - implementation science KW - feasibility KW - evidence-based program N2 - Background: The United Nations? Sustainable Development Goal 4, and particularly target 4.2, which seeks to ensure that, by 2030, all children have access to quality early childhood development, care, and preprimary education so that they are ready for primary education, is far from being achieved. The COVID-19 pandemic compromised progress by disrupting education, reducing access to well-being resources, and increasing family violence. Evidence from low- and middle-income countries suggests that in-person parenting interventions are effective at improving child learning and preventing family violence. However, scaling up these programs is challenging because of resource constraints. Integrating digital and human-delivered intervention components is a potential solution to these challenges. There is a need to understand the feasibility and effectiveness of such interventions in low-resource settings. Objective: This study aims to determine the feasibility and effectiveness of a digital parenting program (called Naungan Kasih in Bahasa Melayu [Protection through Love]) delivered in Malaysia, with varying combinations of 2 components included to encourage engagement. The study is framed around the following objectives: (1) to determine the recruitment, retention, and engagement rates in each intervention condition; (2) to document implementation fidelity; (3) to explore program acceptability among key stakeholders; (4) to estimate intervention costs; and (5) to provide indications of the effectiveness of the 2 components. Methods: This 10-week factorial cluster randomized trial compares ParentText, a chatbot that delivers parenting and family violence prevention content to caregivers of preschool-aged children in combination with 2 engagement components: (1) a WhatsApp support group and (2) either 1 or 2 in-person sessions. The trial aims to recruit 160 primary and 160 secondary caregivers of children aged 4-6 years from 8 schools split equally across 2 locations: Kuala Lumpur and Negeri Sembilan. The primary outcomes concern the feasibility and acceptability of the intervention and its components, including recruitment, retention, and engagement. The effectiveness outcomes include caregiver parenting practices, mental health and relationship quality, and child development. The evaluation involves mixed methods: quantitative caregiver surveys, digitally tracked engagement data of caregivers? use of the digital intervention components, direct assessments of children, and focus group discussions with caregivers and key stakeholders. Results: Overall, 208 parents were recruited at baseline December 2023: 151 (72.6%) primary caregivers and 57 (27.4%) secondary caregivers. In January 2024, of these 208 parents, 168 (80.8%) enrolled in the program, which was completed in February. Postintervention data collection was completed in March 2024. Findings will be reported in the second half of 2024. Conclusions: This is the first factorial cluster randomized trial to assess the feasibility of a hybrid human-digital playful parenting program in Southeast Asia. The results will inform a large-scale optimization trial to establish the most effective, cost-effective, and scalable version of the intervention. Trial Registration: OSF Registries; https://osf.io/f32ky International Registered Report Identifier (IRRID): DERR1-10.2196/55491 UR - https://www.researchprotocols.org/2024/1/e55491 UR - http://dx.doi.org/10.2196/55491 UR - http://www.ncbi.nlm.nih.gov/pubmed/38669679 ID - info:doi/10.2196/55491 ER - TY - JOUR AU - Liu, Xiaoxiao AU - Guo, Huijing AU - Wang, Le AU - Hu, Mingye AU - Wei, Yichan AU - Liu, Fei AU - Wang, Xifu PY - 2024/4/25 TI - Effect of Prosocial Behaviors on e-Consultations in a Web-Based Health Care Community: Panel Data Analysis JO - J Med Internet Res SP - e52646 VL - 26 KW - prosocial behaviors KW - proactive behaviors KW - reactive behaviors KW - reputations KW - e-consultation volume KW - live streaming N2 - Background: Patients using web-based health care communities for e-consultation services have the option to choose their service providers from an extensive digital market. To stand out in this crowded field, doctors in web-based health care communities often engage in prosocial behaviors, such as proactive and reactive actions, to attract more users. However, the effect of these behaviors on the volume of e-consultations remains unclear and warrants further exploration. Objective: This study investigates the impact of various prosocial behaviors on doctors? e-consultation volume in web-based health care communities and the moderating effects of doctors? digital and offline reputations. Methods: A panel data set containing information on 2880 doctors over a 22-month period was obtained from one of the largest web-based health care communities in China. Data analysis was conducted using a 2-way fixed effects model with robust clustered SEs. A series of robustness checks were also performed, including alternative measurements of independent variables and estimation methods. Results: Results indicated that both types of doctors? prosocial behaviors, namely, proactive and reactive actions, positively impacted their e-consultation volume. In terms of the moderating effects of external reputation, doctors? offline professional titles were found to negatively moderate the relationship between their proactive behaviors and their e-consultation volume. However, these titles did not significantly affect the relationship between doctors? reactive behaviors and their e-consultation volume (P=.45). Additionally, doctors? digital recommendations from patients negatively moderated both the relationship between doctors? proactive behaviors and e-consultation volume and the relationship between doctors? reactive behaviors and e-consultation volume. Conclusions: Drawing upon functional motives theory and social exchange theory, this study categorizes doctors? prosocial behaviors into proactive and reactive actions. It provides empirical evidence that prosocial behaviors can lead to an increase in e-consultation volume. This study also illuminates the moderating roles doctors? digital and offline reputations play in the relationships between prosocial behaviors and e-consultation volume. UR - https://www.jmir.org/2024/1/e52646 UR - http://dx.doi.org/10.2196/52646 UR - http://www.ncbi.nlm.nih.gov/pubmed/38663006 ID - info:doi/10.2196/52646 ER - TY - JOUR AU - Pretorius, Kelly AU - Kang, Sookja AU - Choi, Eunju PY - 2024/4/23 TI - Photos Shared on Facebook in the Context of Safe Sleep Recommendations: Content Analysis of Images JO - JMIR Pediatr Parent SP - e54610 VL - 7 KW - SUID KW - SIDS KW - parenting KW - safe sleep KW - photo analysis KW - pediatric KW - pediatrics KW - paediatric KW - paediatrics KW - infant KW - infants KW - infancy KW - baby KW - babies KW - neonate KW - neonates KW - neonatal KW - newborn KW - newborns KW - sleep KW - safety KW - death KW - mortality KW - social media KW - picture KW - pictures KW - photo KW - photos KW - photographs KW - image KW - images KW - Facebook KW - mother KW - mothers KW - parent KW - co-sleeping KW - sudden infant death KW - sudden unexpected infant death KW - adherence KW - parent education KW - parents' education KW - awareness N2 - Background: Sudden unexpected infant death (SUID) remains a leading cause of infant mortality; therefore, understanding parental practices of infant sleep at home is essential. Since social media analyses yield invaluable patient perspectives, understanding sleep practices in the context of safe sleep recommendations via a Facebook mothers? group is instrumental for policy makers, health care providers, and researchers. Objective: This study aimed to identify photos shared by mothers discussing SUID and safe sleep online and assess their consistency with infant sleep guidelines per the American Academy of Pediatrics (AAP). We hypothesized the photos would not be consistent with guidelines based on prior research and increasing rates of accidental suffocation and strangulation in bed. Methods: Data were extracted from a Facebook mothers? group in May 2019. After trialing various search terms, searching for the term ?SIDS? on the selected Facebook group resulted in the most relevant discussions on SUID and safe sleep. The resulting data, including 20 posts and 912 comments among 512 mothers, were extracted and underwent qualitative descriptive content analysis. In completing the extraction and subsequent analysis, 24 shared personal photos were identified among the discussions. Of the photos, 14 pertained to the infant sleep environment. Photos of the infant sleep environment were then assessed for consistency with safe sleep guidelines per the AAP standards by 2 separate reviewers. Results: Of the shared photos relating to the infant sleep environment, 86% (12/14) were not consistent with AAP safe sleep guidelines. Specific inconsistencies included prone sleeping, foreign objects in the sleeping environment, and use of infant sleeping devices. Use of infant monitoring devices was also identified. Conclusions: This study is unique because the photos originated from the home setting, were in the context of SUID and safe sleep, and were obtained without researcher interference. Despite study limitations, the commonality of prone sleeping, foreign objects, and the use of both infant sleep and monitoring devices (ie, overall inconsistency regarding AAP safe sleep guidelines) sets the stage for future investigation regarding parental barriers to practicing safe infant sleep and has implications for policy makers, clinicians, and researchers. UR - https://pediatrics.jmir.org/2024/1/e54610 UR - http://dx.doi.org/10.2196/54610 ID - info:doi/10.2196/54610 ER - TY - JOUR AU - Howdle, Charlotte AU - Wright, Alexander William James AU - Mant, Jonathan AU - De Simoni, Anna PY - 2024/4/16 TI - Factors Influencing Recovery From Pediatric Stroke Based on Discussions From a UK-Based Online Stroke Community: Qualitative Thematic Study JO - J Med Internet Res SP - e49409 VL - 26 KW - child KW - stroke KW - rehabilitation KW - barriers KW - facilitators KW - internet-based intervention KW - self-help group KW - thematic analysis N2 - Background: The incidence of stroke in children is low, and pediatric stroke rehabilitation services are less developed than adult ones. Survivors of pediatric stroke have a long poststroke life expectancy and therefore have the potential to experience impairments from their stroke for many years. However, there are relatively few studies characterizing these impairments and what factors facilitate or counteract recovery. Objective: This study aims to characterize the main barriers to and facilitators of recovery from pediatric stroke. A secondary aim was to explore whether these factors last into adulthood, whether they change, or if new factors impacting recovery emerge in adulthood. Methods: We performed a qualitative thematic analysis based on posts from a population of participants from a UK-based online stroke community, active between 2004 and 2011. The analysis focused on users who talked about their experiences with pediatric stroke, as identified by a previous study. The posts were read by 3 authors, and factors influencing recovery from pediatric stroke were mapped into 4 areas: medical, physical, emotional, and social. Factors influencing recovery were divided into short-term and long-term factors. Results: There were 425 posts relating to 52 survivors of pediatric stroke. Some survivors of stroke posted for themselves, while others were talked about by a third party (mostly parents; 31/35, 89% mothers). In total, 79% (41/52) of survivors of stroke were aged ?18 years and 21% (11/52) were aged >18 years at the time of posting. Medical factors included comorbidities as a barrier to recovery. Medical interventions, such as speech and language therapy and physiotherapy, were also deemed useful. Exercise, particularly swimming, was deemed a facilitator. Among physical factors, fatigue and chronic pain could persist decades after a stroke, with both reported as a barrier to feeling fully recovered. Tiredness could worsen existing stroke-related impairments. Other long-standing impairments were memory loss, confusion, and dizziness. Among emotional factors, fear and uncertainty were short-term barriers, while positivity was a major facilitator in both short- and long-term recovery. Anxiety, grief, and behavioral problems hindered recovery. The social barriers were loneliness, exclusion, and hidden disabilities not being acknowledged by third parties. A good support network and third-party support facilitated recovery. Educational services were important in reintegrating survivors into society. Participants reported that worrying about losing financial support, such as disability allowances, and difficulties in obtaining travel insurance and driving licenses impacted recovery. Conclusions: The lived experience of survivors of pediatric stroke includes long-term hidden disabilities and barriers to rehabilitation. These are present in different settings, such as health care, schools, workplaces, and driving centers. Greater awareness of these issues by relevant professional groups may help ameliorate them. UR - https://www.jmir.org/2024/1/e49409 UR - http://dx.doi.org/10.2196/49409 UR - http://www.ncbi.nlm.nih.gov/pubmed/38625726 ID - info:doi/10.2196/49409 ER - TY - JOUR AU - Zhou, Runtao AU - Xie, Zidian AU - Tang, Qihang AU - Li, Dongmei PY - 2024/4/1 TI - Social Network Analysis of e-Cigarette?Related Social Media Influencers on Twitter/X: Observational Study JO - JMIR Form Res SP - e53666 VL - 8 KW - social network KW - social media KW - influencer KW - electronic cigarettes KW - e-cigarette KW - vaping KW - vape KW - Twitter KW - observational study KW - aerosol KW - consumer KW - influencers KW - social network analysis KW - antivaping KW - campaigns N2 - Background: An e-cigarette uses a battery to heat a liquid that generates an aerosol for consumers to inhale. e-Cigarette use (vaping) has been associated with respiratory disease, cardiovascular disease, and cognitive functions. Recently, vaping has become increasingly popular, especially among youth and young adults. Objective: The aim of this study was to understand the social networks of Twitter (now rebranded as X) influencers related to e-cigarettes through social network analysis. Methods: Through the Twitter streaming application programming interface, we identified 3,617,766 unique Twitter accounts posting e-cigarette?related tweets from May 3, 2021, to June 10, 2022. Among these, we identified 33 e-cigarette influencers. The followers of these influencers were grouped according to whether or not they post about e-cigarettes themselves; specifically, the former group was defined as having posted at least five e-cigarette?related tweets in the past year, whereas the latter group was defined as followers that had not posted any e-cigarette?related tweets in the past 3 years. We randomly sampled 100 user accounts among each group of e-cigarette influencer followers and created corresponding social networks for each e-cigarette influencer. We compared various network measures (eg, clustering coefficient) between the networks of the two follower groups. Results: Major topics from e-cigarette?related tweets posted by the 33 e-cigarette influencers included advocating against vaping policy (48.0%), vaping as a method to quit smoking (28.0%), and vaping product promotion (24.0%). The follower networks of these 33 influencers showed more connections for those who also post about e-cigarettes than for followers who do not post about e-cigarettes, with significantly higher clustering coefficients for the former group (0.398 vs 0.098; P=.005). Further, networks of followers who post about e-cigarettes exhibited substantially more incoming and outgoing connections than those of followers who do not post about e-cigarettes, with significantly higher in-degree (0.273 vs 0.084; P=.02), closeness (0.452 vs 0.137; P=.04), betweenness (0.036 vs 0.008; P=.001), and out-of-degree (0.097 vs 0.014; P=.02) centrality values. The followers who post about e-cigarettes also had a significantly (P<.001) higher number of followers (n=322) than that of followers who do not post about e-cigarettes (n=201). The number of tweets in the networks of followers who post about e-cigarettes was significantly higher than that in the networks of followers who do not post about e-cigarettes (93 vs 43; P<.001). Two major topics discussed in the networks of followers who post about e-cigarettes included promoting e-cigarette products or vaping activity (55.7%) and vaping being a help for smoking cessation and harm reduction (44.3%). Conclusions: Followers of e-cigarette influencers who also post about e-cigarettes have more closely connected networks than those of followers who do not themselves post about e-cigarettes. These findings provide a potentially practical intervention approach for future antivaping campaigns. UR - https://formative.jmir.org/2024/1/e53666 UR - http://dx.doi.org/10.2196/53666 UR - http://www.ncbi.nlm.nih.gov/pubmed/38557555 ID - info:doi/10.2196/53666 ER - TY - JOUR AU - Ng, Reuben AU - Indran, Nicole PY - 2024/3/29 TI - #ProtectOurElders: Analysis of Tweets About Older Asian Americans and Anti-Asian Sentiments During the COVID-19 Pandemic JO - J Med Internet Res SP - e45864 VL - 26 KW - AAPI KW - anti-Asian hate KW - anti-Asian KW - Asian Americans and Pacific Islanders KW - Asian-American KW - content analysis KW - coronavirus KW - COVID-19 KW - discourse KW - discriminate KW - discrimination KW - discriminatory KW - Pacific Islander KW - racial KW - racism KW - racist KW - SARS-CoV-2 KW - social media KW - tweet KW - Twitter N2 - Background: A silver lining to the COVID-19 pandemic is that it cast a spotlight on a long-underserved group. The barrage of attacks against older Asian Americans during the crisis galvanized society into assisting them in various ways. On Twitter, now known as X, support for them coalesced around the hashtag #ProtectOurElders. To date, discourse surrounding older Asian Americans has escaped the attention of gerontologists?a gap we seek to fill. Our study serves as a reflection of the level of support that has been extended to older Asian Americans, even as it provides timely insights that will ultimately advance equity for them. Objective: This study explores the kinds of discourse surrounding older Asian Americans during the COVID-19 crisis, specifically in relation to the surge in anti-Asian sentiments. The following questions guide this study: What types of discourse have emerged in relation to older adults in the Asian American community and the need to support them? How do age and race interact to shape these discourses? What are the implications of these discourses for older Asian Americans? Methods: We retrieved tweets (N=6099) through 2 search queries. For the first query, we collated tweets with the hashtag #ProtectOurElders. For the second query, we collected tweets with an age-based term, for example, ?elderly? or ?old(er) adults(s)? and either the hashtag #StopAAPIHate or #StopAsianHate. Tweets were posted from January 1, 2020, to August 1, 2023. After applying the exclusion criteria, the final data set contained 994 tweets. Inductive and deductive approaches informed our qualitative content analysis. Results: A total of 4 themes emerged, with 50.1% (498/994) of posts framing older Asian Americans as ?vulnerable and in need of protection? (theme 1). Tweets in this theme either singled them out as a group in need of protection because of their vulnerable status or discussed initiatives aimed at safeguarding their well-being. Posts in theme 2 (309/994, 31%) positioned them as ?heroic and resilient.? Relevant tweets celebrated older Asian Americans for displaying tremendous strength in the face of attack or described them as individuals not to be trifled with. Tweets in theme 3 (102/994, 10.2%) depicted them as ?immigrants who have made selfless contributions and sacrifices.? Posts in this section referenced the immense sacrifices made by older Asian Americans as they migrated to the United States, as well as the systemic barriers they had to overcome. Posts in theme 4 (85/994, 8.5%) venerated older Asian Americans as ?worthy of honor.? Conclusions: The COVID-19 crisis had the unintended effect of garnering greater support for older Asian Americans. It is consequential that support be extended to this group not so much by virtue of their perceived vulnerability but more so in view of their boundless contributions and sacrifices. UR - https://www.jmir.org/2024/1/e45864 UR - http://dx.doi.org/10.2196/45864 UR - http://www.ncbi.nlm.nih.gov/pubmed/38551624 ID - info:doi/10.2196/45864 ER - TY - JOUR AU - Xue, Jia AU - Zhang, Qiaoru AU - Zhang, Yun AU - Shi, Hong AU - Zheng, Chengda AU - Fan, Jingchuan AU - Zhang, Linxiao AU - Chen, Chen AU - Li, Luye AU - Shier, L. Micheal PY - 2024/3/27 TI - Bridging and Bonding Social Capital by Analyzing the Demographics, User Activities, and Social Network Dynamics of Sexual Assault Centers on Twitter: Mixed Methods Study JO - J Med Internet Res SP - e50552 VL - 26 KW - social media KW - Twitter KW - sexual assault KW - nonprofits KW - Canada KW - violence KW - geolocation KW - communication N2 - Background: Social media platforms have gained popularity as communication tools for organizations to engage with clients and the public, disseminate information, and raise awareness about social issues. From a social capital perspective, relationship building is seen as an investment, involving a complex interplay of tangible and intangible resources. Social media?based social capital signifies the diverse social networks that organizations can foster through their engagement on social media platforms. Literature underscores the great significance of further investigation into the scope and nature of social media use, particularly within sectors dedicated to service delivery, such as sexual assault organizations. Objective: This study aims to fill a research gap by investigating the use of Twitter by sexual assault support agencies in Canada. It seeks to understand the demographics, user activities, and social network structure within these organizations on Twitter, focusing on building social capital. The research questions explore the demographic profile, geographic distribution, and Twitter activity of these organizations as well as the social network dynamics of bridging and bonding social capital. Methods: This study used purposive sampling to investigate sexual assault centers in Canada with active Twitter accounts, resulting in the identification of 124 centers. The Twitter handles were collected, yielding 113 unique handles, and their corresponding Twitter IDs were obtained and validated. A total of 294,350 tweets were collected from these centers, covering >93.54% of their Twitter activity. Preprocessing was conducted to prepare the data, and descriptive analysis was used to determine the center demographics and age. Furthermore, geolocation mapping was performed to visualize the center locations. Social network analysis was used to explore the intricate relationships within the network of sexual assault center Twitter accounts, using various metrics to assess the network structure and connectivity dynamics. Results: The results highlight the substantial presence of sexual assault organizations on Twitter, particularly in provinces such as Ontario, British Columbia, and Quebec, underscoring the importance of tailored engagement strategies considering regional disparities. The analysis of Twitter account creation years shows a peak in 2012, followed by a decline in new account creations in subsequent years. The monthly tweet activity shows November as the most active month, whereas July had the lowest activity. The study also reveals variations in Twitter activity, account creation patterns, and social network dynamics, identifying influential social queens and marginalized entities within the network. Conclusions: This study presents a comprehensive landscape of the demographics and activities of sexual assault centers in Canada on Twitter. This study suggests that future research should explore the long-term consequences of social media use and examine stakeholder perceptions, providing valuable insights to improve communication practices within the nonprofit human services sector and further the missions of these organizations. UR - https://www.jmir.org/2024/1/e50552 UR - http://dx.doi.org/10.2196/50552 UR - http://www.ncbi.nlm.nih.gov/pubmed/38536222 ID - info:doi/10.2196/50552 ER - TY - JOUR AU - Molenaar, Annika AU - Lukose, Dickson AU - Brennan, Linda AU - Jenkins, L. Eva AU - McCaffrey, A. Tracy PY - 2024/3/21 TI - Using Natural Language Processing to Explore Social Media Opinions on Food Security: Sentiment Analysis and Topic Modeling Study JO - J Med Internet Res SP - e47826 VL - 26 KW - food security KW - food insecurity KW - public health KW - sentiment analysis KW - topic modeling KW - natural language processing KW - infodemiology N2 - Background: Social media has the potential to be of great value in understanding patterns in public health using large-scale analysis approaches (eg, data science and natural language processing [NLP]), 2 of which have been used in public health: sentiment analysis and topic modeling; however, their use in the area of food security and public health nutrition is limited. Objective: This study aims to explore the potential use of NLP tools to gather insights from real-world social media data on the public health issue of food security. Methods: A search strategy for obtaining tweets was developed using food security terms. Tweets were collected using the Twitter application programming interface from January 1, 2019, to December 31, 2021, filtered for Australia-based users only. Sentiment analysis of the tweets was performed using the Valence Aware Dictionary and Sentiment Reasoner. Topic modeling exploring the content of tweets was conducted using latent Dirichlet allocation with BigML (BigML, Inc). Sentiment, topic, and engagement (the sum of likes, retweets, quotations, and replies) were compared across years. Results: In total, 38,070 tweets were collected from 14,880 Twitter users. Overall, the sentiment when discussing food security was positive, although this varied across the 3 years. Positive sentiment remained higher during the COVID-19 lockdown periods in Australia. The topic model contained 10 topics (in order from highest to lowest probability in the data set): ?Global production,? ?Food insecurity and health,? ?Use of food banks,? ?Giving to food banks,? ?Family poverty,? ?Food relief provision,? ?Global food insecurity,? ?Climate change,? ?Australian food insecurity,? and ?Human rights.? The topic ?Giving to food banks,? which focused on support and donation, had the highest proportion of positive sentiment, and ?Global food insecurity,? which covered food insecurity prevalence worldwide, had the highest proportion of negative sentiment. When compared with news, there were some events, such as COVID-19 support payment introduction and bushfires across Australia, that were associated with high periods of positive or negative sentiment. Topics related to food insecurity prevalence, poverty, and food relief in Australia were not consistently more prominent during the COVID-19 pandemic than before the pandemic. Negative tweets received substantially higher engagement across 2019 and 2020. There was no clear relationship between topics that were more likely to be positive or negative and have higher or lower engagement, indicating that the identified topics are discrete issues. Conclusions: In this study, we demonstrated the potential use of sentiment analysis and topic modeling to explore evolution in conversations on food security using social media data. Future use of NLP in food security requires the context of and interpretation by public health experts and the use of broader data sets, with the potential to track dimensions or events related to food security to inform evidence-based decision-making in this area. UR - https://www.jmir.org/2024/1/e47826 UR - http://dx.doi.org/10.2196/47826 UR - http://www.ncbi.nlm.nih.gov/pubmed/38512326 ID - info:doi/10.2196/47826 ER - TY - JOUR AU - Wright, A. William J. AU - Howdle, Charlotte AU - Coulson, S. Neil AU - De Simoni, Anna PY - 2024/3/15 TI - Exploring the Types of Social Support Exchanged by Survivors of Pediatric Stroke and Their Families in an Online Peer Support Community: Qualitative Thematic Analysis JO - J Med Internet Res SP - e49440 VL - 26 KW - child KW - internet-based intervention KW - online health communities KW - peer support KW - qualitative analysis KW - rehabilitation KW - self-help group KW - self-help KW - social support KW - stroke KW - support groups KW - thematic analysis N2 - Background: Pediatric stroke is relatively rare and underresearched, and there is little awareness of its occurrence in wider society. There is a paucity of literature on the effectiveness of interventions to improve rehabilitation and the services available to survivors. Access to online health communities through the internet may be a means of support for patients with pediatric stroke and their families during recovery; however, little research has been done in this area. Objective: This study aims to identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families. Methods: This was a qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004 and 2011. The population was split into 2 groups based on whether stroke survivors were aged ?18 years or aged >18 years at the time of posting. The posts were read by 2 authors who used the adapted Social Support Behavior Code to analyze the types of social support exchanged. Results: A total of 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. About 41 survivors were aged ?18 years at the time of posting and were written about by others (31/35 were mothers), while 11 were aged >18 years and were writing about themselves. Survivors and their families joined together in discussion threads. Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4%) contained at least 1 instance of social support. All 5 types of social support were identified: informational, emotional, network, esteem support, and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants aged ?18 years at the time of posting; this finding was reversed in the group aged >18 years. Network support and esteem support were less commonly exchanged. Notably, the access subcategory of network support was not exchanged with the community. Tangible aid was the least commonly offered type of support. The exchanged social support provided insight into rehabilitation interventions and the unmet needs of pediatric stroke survivors. Conclusions: We found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long- and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key, as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities. UR - https://www.jmir.org/2024/1/e49440 UR - http://dx.doi.org/10.2196/49440 UR - http://www.ncbi.nlm.nih.gov/pubmed/38488858 ID - info:doi/10.2196/49440 ER - TY - JOUR AU - Abdulai, Abdul-Fatawu AU - Naghdali, Hasti AU - Noga, Heather AU - Yong, J. Paul PY - 2024/3/15 TI - Patient-Centered Approaches for Designing Destigmatizing Sexual Pain-Related Web-Based Platforms: Qualitative Study JO - JMIR Form Res SP - e53742 VL - 8 KW - stigma KW - digital health KW - sexual pain KW - destigmatizing KW - end user patients N2 - Background: Sexual pain is a common but neglected disorder that affects approximately 3% to 18% of women and an unmeasured number of gender-diverse people worldwide. Despite its wide prevalence, many people feel reluctant to visit conventional health care services or disclose their symptoms due to the fear of stigmatization. To alleviate this stigma, various web-based interventions have been developed to complement and, in some cases, replace conventional sexual health interventions. However, the way these web-based interventions are developed could inadvertently reproduce, perpetuate, or exacerbate stigma among end user patients. Objective: The purpose of this study was to understand patients? perspectives on how sexual pain?related web platforms can be designed to alleviate stigma or prevent the unintended effects of stigma among patients who use web-based interventions. Methods: Individual semistructured interviews were conducted among 16 participants with lived experiences of painful sex in a large urban city in Western Canada. Participants were recruited via social media platforms, newsletters, and a provincial health volunteer website. Using a sample sexual pain website to provide context, participants were interviewed about their experiences of stigma and how they think web platforms could be designed to address stigma. The interviews were conducted via Zoom (Zoom Technologies Inc) and analyzed using thematic analysis. Results: The findings revealed 4 overarching themes that represented participants? perspectives on designing web platforms that may alleviate or prevent the unintended effects of stigma. These findings suggested the design of inclusive web platforms, having a nonprovocative and calming user interface, having features that facilitate connections among users and between users and providers, and displaying personal testimonials and experiences of sexual pain. Conclusions: This study highlighted patient-centered design approaches that could serve as a reference guide in developing web platforms that alleviate or prevent the unintended effects of stigma, particularly among nonheterosexual and gender-diverse people. While this study was conducted in the context of sexual pain, the results might also apply to web platforms on other potentially stigmatizing health-related disorders or conditions. UR - https://formative.jmir.org/2024/1/e53742 UR - http://dx.doi.org/10.2196/53742 UR - http://www.ncbi.nlm.nih.gov/pubmed/38488844 ID - info:doi/10.2196/53742 ER - TY - JOUR AU - Jia, Chenjin AU - Li, Pengcheng PY - 2024/3/8 TI - Generation Z?s Health Information Avoidance Behavior: Insights From Focus Group Discussions JO - J Med Internet Res SP - e54107 VL - 26 KW - information avoidance KW - health information KW - Generation Z KW - information overload KW - planned risk information avoidance model N2 - Background: Younger generations actively use social media to access health information. However, research shows that they also avoid obtaining health information online at times when confronted with uncertainty. Objective: This study aims to examine the phenomenon of health information avoidance among Generation Z, a representative cohort of active web users in this era. Methods: Drawing on the planned risk information avoidance model, we adopted a qualitative approach to explore the factors related to information avoidance within the context of health and risk communication. The researchers recruited 38 participants aged 16 to 25 years for the focus group discussion sessions. Results: In this study, we sought to perform a deductive qualitative analysis of the focus group interview content with open, focused, and theoretical coding. Our findings support several key components of the planned risk information avoidance model while highlighting the underlying influence of cognition on emotions. Specifically, socioculturally, group identity and social norms among peers lead some to avoid health information. Cognitively, mixed levels of risk perception, conflicting values, information overload, and low credibility of information sources elicited their information avoidance behaviors. Affectively, negative emotions such as anxiety, frustration, and the desire to stay positive contributed to avoidance. Conclusions: This study has implications for understanding young users? information avoidance behaviors in both academia and practice. UR - https://www.jmir.org/2024/1/e54107 UR - http://dx.doi.org/10.2196/54107 UR - http://www.ncbi.nlm.nih.gov/pubmed/38457223 ID - info:doi/10.2196/54107 ER - TY - JOUR AU - Lightfoot, Marguerita AU - Campbell, Chadwick AU - Maragh-Bass, C. Allysha AU - Jackson-Morgan, Joi AU - Taylor, Kelly PY - 2024/2/28 TI - What Adolescents Say in Text Messages to Motivate Peer Networks to Access Health Care and Sexually Transmitted Infection Testing: Qualitative Thematic Analysis JO - J Med Internet Res SP - e44861 VL - 26 KW - adolescents KW - clinics KW - HIV/STI testing KW - intervention KW - mobile health KW - peer KW - screening KW - sexually active KW - STI KW - text messaging KW - young adult N2 - Background: While rates of HIV and sexually transmitted infections (STIs) are extremely high among adolescents and young adults in the United States, rates of HIV and STI testing remain low. Given the ubiquity of mobile phones and the saliency of peers for youths, text messaging strategies may successfully promote HIV or STI testing among youths. Objective: This study aimed to understand the types of messages youths believe were motivating and persuasive when asked to text friends to encourage them to seek HIV or STI testing services at a neighborhood clinic. Methods: We implemented an adolescent peer-based text messaging intervention to encourage clinic attendance and increase STI and HIV testing among youths (n=100) at an adolescent clinic in San Francisco, California. Participants were asked to send a text message to 5 friends they believed were sexually active to encourage their friends to visit the clinic and receive STI or HIV screening. Thematic analysis was used to analyze the content of the text messages sent and received during the clinic visit. Member checking and consensus coding were used to ensure interrater reliability and significance of themes. Results: We identified four themes in the messages sent by participants: (1) calls to action to encourage peers to get tested, (2) personalized messages with sender-specific information, (3) clinic information such as location and hours, and (4) self-disclosure of personal clinic experience. We found that nearly all text messages included some combination of 2 or more of these broad themes. We also found that youths were inclined to send messages they created themselves, as opposed to sending the same message to each peer, which they tailored to each individual to whom they were sent. Many (40/100, 40%) received an immediate response to their message, and most participants reported receiving at least 1 positive response, while a few reported that they had received at least 1 negative response. There were some differences in responses depending on the type of message sent. Conclusions: Given the high rates of STI and HIV and low rates of testing among adolescents, peer-driven text messaging interventions to encourage accessing care may be successful at reaching this population. This study suggests that youths are willing to text message their friends, and there are clear types of messages they develop and use. Future research should use these methods with a large, more diverse sample of youths and young adults for long-term evaluation of care seeking and care retention outcomes to make progress in reducing HIV and STI among adolescents and young adults. UR - https://www.jmir.org/2024/1/e44861 UR - http://dx.doi.org/10.2196/44861 UR - http://www.ncbi.nlm.nih.gov/pubmed/38416541 ID - info:doi/10.2196/44861 ER - TY - JOUR AU - Pham, Sheila AU - Churruca, Kate AU - Ellis, A. Louise AU - Braithwaite, Jeffrey PY - 2024/2/26 TI - Help-Seeking, Support, and Engagement in Gestational Diabetes Mellitus Online Communities on Facebook: Content Analysis JO - JMIR Form Res SP - e49494 VL - 8 KW - clinical management KW - communication KW - content analysis KW - engagement KW - Facebook KW - gestational diabetes KW - health communication KW - help-seeking behavior KW - mental distress KW - online communities KW - peer-support KW - self-disclosure KW - self-management KW - support N2 - Background: The prevalence of gestational diabetes mellitus (GDM) has drastically risen in recent years. For some, self-management includes the use of GDM online communities on Facebook. Such communities can fill gaps in information and support that participants are not able to access elsewhere to address unmet needs. Given the popularity of sharing information about pregnancy on Facebook and the documented benefits of diabetes online communities, the same may be true of GDM online communities. Objective: This study aimed to categorize and quantify what is being discussed in GDM Facebook groups, including informational and emotional help-seeking behavior, and how this support and engagement may be demonstrated by peers through comments and reactions. Methods: We sourced the data from the 2 largest Facebook groups focused on GDM in Australia. A summative content analysis was conducted on original posts across the 2 groups and coded for topics as well as help-seeking types. The coding scheme was based on the previous work of Liang and Scammon. Visible indicators of engagement, including the number of comments and ?reactions,? were tabled and manually evaluated. Results: There were 388 original posts, and the analysis produced 6 topics: GDM self-management (199/388, 51.3%), GDM clinical management (120/388, 30.9%), preparing for birth (40/388, 10.3%), mental distress (35/388, 9%), birth announcement (29/388, 7.5%), and GDM journey reflections (21/388, 5.4%). Secondary coding of help-seeking type revealed more than half of the posts were informational help-seeking (224/388, 57.7%), while a small proportion were both informational and emotional help-seeking (44/388, 11.3%), and some (12/388, 3.1%) were emotional help-seeking only. Self-disclosure was identified as a fourth category, comprising almost a quarter of all posts (90/388, 23.2%). A total of 6022 comments were posted in response to the original posts, and there were 4452 reactions across all posts. Emotional help-seeking attracted the most comments per thread (mean 21.5, SD 19.8), followed by informational and emotional help-seeking (mean 20.2, SD 14.7), informational help-seeking (mean 15.6, SD 14.6), and self-disclosure (mean 14.3, SD 21.8). Across all help-seeking categories, few reactions occurred compared to comments; in contrast, self-disclosure attracted a large number of reactions (mean 9.4, SD 45.3). Conclusions: This is one of the first studies to examine peer support in a GDM online community on Facebook. Our findings suggest that active participants? needs around information and support in relation to GDM are being somewhat met by peer-led online communities. Given the practical limitations of formal health care, including the provision of ongoing social support, it is important to recognize how GDM online communities can complement formal health care and help address unmet needs. UR - https://formative.jmir.org/2024/1/e49494 UR - http://dx.doi.org/10.2196/49494 UR - http://www.ncbi.nlm.nih.gov/pubmed/38407949 ID - info:doi/10.2196/49494 ER - TY - JOUR AU - Davidson, Anne Cara AU - Booth, Richard AU - Jackson, Teresa Kimberley AU - Mantler, Tara PY - 2024/2/23 TI - Toxic Relationships Described by People With Breast Cancer on Reddit: Topic Modeling Study JO - JMIR Cancer SP - e48860 VL - 10 KW - breast cancer KW - intimate partner violence KW - meaning extraction method KW - Reddit KW - sentiment analysis KW - social media KW - social support KW - toxic relationships KW - topic modelling N2 - Background: Social support is essential to promoting optimal health outcomes for women with breast cancer. However, an estimated 12% of women with breast cancer simultaneously experience intimate partner violence (IPV; physical, psychological, or sexual abuse by an intimate partner). Women who experience IPV during breast cancer may lack traditional social support, and thus seek out alternative sources of support. Online community forums, such as Reddit, can provide accessible social connections within breast cancer?specific communities. However, it is largely unknown how women with breast cancer use Reddit to describe and seek support for experiences of IPV. Objective: This study aims to explore how patients with breast cancer describe toxic relationships with their partners and immediate family members on Reddit. Methods: This exploratory, cross-sectional, topic-modeling study analyzed textual data from 96 users in the r/breastcancer subreddit in February 2023. The meaning extraction method, inclusive of principal component analysis, was used to identify underlying components. Components were subjected to sentiment analysis and summative content analysis with emergent categorical development to articulate themes. Results: Seven themes emerged related to toxic relationships: (1) contextualizing storytelling with lymph nodes, (2) toxic behavior and venting emotions, (3) abandonment and abuse following diagnosis, (4) toxic relationships and social-related fears, (5) inner strength and navigating breast cancer over time, (6) assessing social relationships and interactions, and (7) community advice and support. Toxic relationships were commonly characterized by isolation, abandonment, and emotional abuse, which had profound emotional consequences for patients. Reddit facilitated anonymous venting about toxic relationships that helped patients cope with intense feelings and stress. Exchanging advice and support about navigating toxic relationships during breast cancer were core functions of the r/breastcancer community. Conclusions: Findings emphasized the value of Reddit as a source of social support for patients with breast cancer experiencing toxic relationships. Clinicians who understand that many patients with breast cancer experience toxic relationships and considerable psychological sequelae are better prepared to support their patients? holistic well-being. Further investigation of Reddit as a possible resource for advice, information, and support has the potential to help inform clinical practice and subsequently, patient health outcomes. UR - https://cancer.jmir.org/2024/1/e48860 UR - http://dx.doi.org/10.2196/48860 UR - http://www.ncbi.nlm.nih.gov/pubmed/38393769 ID - info:doi/10.2196/48860 ER - TY - JOUR AU - Gu, Dongxiao AU - Wang, Qin AU - Chai, Yidong AU - Yang, Xuejie AU - Zhao, Wang AU - Li, Min AU - Zolotarev, Oleg AU - Xu, Zhengfei AU - Zhang, Gongrang PY - 2024/2/22 TI - Identifying the Risk Factors of Allergic Rhinitis Based on Zhihu Comment Data Using a Topic-Enhanced Word-Embedding Model: Mixed Method Study and Cluster Analysis JO - J Med Internet Res SP - e48324 VL - 26 KW - social media platforms KW - disease risk factor identification KW - chronic disease management KW - topic-enhanced word embedding KW - text mining N2 - Background: Allergic rhinitis (AR) is a chronic disease, and several risk factors predispose individuals to the condition in their daily lives, including exposure to allergens and inhalation irritants. Analyzing the potential risk factors that can trigger AR can provide reference material for individuals to use to reduce its occurrence in their daily lives. Nowadays, social media is a part of daily life, with an increasing number of people using at least 1 platform regularly. Social media enables users to share experiences among large groups of people who share the same interests and experience the same afflictions. Notably, these channels promote the ability to share health information. Objective: This study aims to construct an intelligent method (TopicS-ClusterREV) for identifying the risk factors of AR based on these social media comments. The main questions were as follows: How many comments contained AR risk factor information? How many categories can these risk factors be summarized into? How do these risk factors trigger AR? Methods: This study crawled all the data from May 2012 to May 2022 under the topic of allergic rhinitis on Zhihu, obtaining a total of 9628 posts and 33,747 comments. We improved the Skip-gram model to train topic-enhanced word vector representations (TopicS) and then vectorized annotated text items for training the risk factor classifier. Furthermore, cluster analysis enabled a closer look into the opinions expressed in the category, namely gaining insight into how risk factors trigger AR. Results: Our classifier identified more comments containing risk factors than the other classification models, with an accuracy rate of 96.1% and a recall rate of 96.3%. In general, we clustered texts containing risk factors into 28 categories, with season, region, and mites being the most common risk factors. We gained insight into the risk factors expressed in each category; for example, seasonal changes and increased temperature differences between day and night can disrupt the body?s immune system and lead to the development of allergies. Conclusions: Our approach can handle the amount of data and extract risk factors effectively. Moreover, the summary of risk factors can serve as a reference for individuals to reduce AR in their daily lives. The experimental data also provide a potential pathway that triggers AR. This finding can guide the development of management plans and interventions for AR. UR - https://www.jmir.org/2024/1/e48324 UR - http://dx.doi.org/10.2196/48324 UR - http://www.ncbi.nlm.nih.gov/pubmed/38386404 ID - info:doi/10.2196/48324 ER - TY - JOUR AU - Haack, M. Lauren AU - Armstrong, C. Courtney AU - Travis, Kate AU - Aguilera, Adrian AU - Darrow, M. Sabrina PY - 2024/2/19 TI - HealthySMS Text Messaging System Adjunct to Adolescent Group Cognitive Behavioral Therapy in the Context of COVID-19 (Let?s Text!): Pilot Feasibility and Acceptability Study JO - JMIR Ment Health SP - e49317 VL - 11 KW - depression KW - adolescents KW - evidence-based intervention KW - texting KW - SMS text message KW - cognitive behavioral therapy KW - CBT KW - group CBT KW - shelter-in-place KW - COVID-19 KW - mobile health KW - mHealth KW - therapy KW - cognitive KW - behavior KW - web-based therapy KW - e-therapy KW - youth KW - young adults KW - mobile phone N2 - Background: The widespread occurrence and devastating impact of adolescent depression warrant health service research focused on feasible and acceptable digital health tools to supplement evidence-based intervention (EBI) efforts, particularly in the context of shelter-in-place guidelines disrupting youth socialization and service use in the wake of the COVID-19 pandemic. Given the promise of SMS text message interventions to enhance EBI engagement, our team developed the HealthySMS system as an adjunct to one of the most empirically supported interventions for adolescent depression: cognitive behavioral therapy (CBT) group services. The system sends daily SMS text messages requesting responses assessing mood, thoughts, and activities; weekly attendance reminder messages; daily tips about adherence (eg, a prompt for activity completion); and personalized responses based on participants? texts. Objective: This study aims to evaluate the feasibility and acceptability of HealthySMS in a real-world setting and explore potential mechanisms of change in EBI engagement, before evaluating the system?s impact on adolescents? group CBT engagement and, ultimately, depression outcomes. Methods: Over the course of 2020, we invited all 20 adolescents receiving CBT group services for depression at an outpatient psychiatry clinic to enroll in our HealthySMS study; ultimately, 17 (85%) adolescents agreed to participate. We tracked participant initiation and engagement with the HealthySMS system as well as the content of SMS text message responses to HealthySMS. We also invited each participant to engage in a semistructured interview to gather additional qualitative inputs on the system. Results: All (n=17, 100%) research participants invited agreed to receive HealthySMS messages, and 94% (16/17) of the participants maintained use during the first month without opting out. We uncovered meaningful qualitative themes regarding the feasibility and acceptability of HealthySMS, as well as its potential impact on EBI engagement. Conclusions: Taken together, the results of this pilot study suggest that HealthySMS adjunct to adolescent CBT group depression services is feasible and acceptable, as evidenced by high rates of HealthySMS initiation and low rates of dropout, as well as meaningful themes uncovered from participants? qualitative feedback. In addition, the findings provide evidence regarding iterative improvements to the HealthySMS system and research protocol, as well as potential mechanisms of change for enhanced EBI engagement and, ultimately, adolescent depression outcomes, which can be used in future effectiveness research. UR - https://mental.jmir.org/2024/1/e49317 UR - http://dx.doi.org/10.2196/49317 UR - http://www.ncbi.nlm.nih.gov/pubmed/38373030 ID - info:doi/10.2196/49317 ER - TY - JOUR AU - Spies, Erica AU - Andreu, Thomas AU - Hartung, Matthias AU - Park, Josephine AU - Kamudoni, Paul PY - 2024/2/2 TI - Exploring the Perspectives of Patients Living With Lupus: Retrospective Social Listening Study JO - JMIR Form Res SP - e52768 VL - 8 KW - systemic lupus erythematosus KW - SLE KW - cutaneous lupus erythematosus KW - CLE KW - quality of life KW - health-related quality of life KW - HRQoL KW - social media listening KW - lupus KW - rare KW - cutaneous KW - social media KW - infodemiology KW - infoveillance KW - social listening KW - natural language processing KW - machine learning KW - experience KW - experiences KW - tagged KW - tagging KW - visualization KW - visualizations KW - knowledge graph KW - chronic KW - autoimmune KW - inflammation KW - inflammatory KW - skin KW - dermatology KW - dermatological KW - forum KW - forums KW - blog KW - blogs N2 - Background: Systemic lupus erythematosus (SLE) is a chronic autoimmune inflammatory disease affecting various organs with a wide range of clinical manifestations. Cutaneous lupus erythematosus (CLE) can manifest as a feature of SLE or an independent skin ailment. Health-related quality of life (HRQoL) is frequently compromised in individuals living with lupus. Understanding patients? perspectives when living with a disease is crucial for effectively meeting their unmet needs. Social listening is a promising new method that can provide insights into the experiences of patients living with their disease (lupus) and leverage these insights to inform drug development strategies for addressing their unmet needs. Objective: The objective of this study is to explore the experience of patients living with SLE and CLE, including their disease and treatment experiences, HRQoL, and unmet needs, as discussed in web-based social media platforms such as blogs and forums. Methods: A retrospective exploratory social listening study was conducted across 13 publicly available English-language social media platforms from October 2019 to January 2022. Data were processed using natural language processing and knowledge graph tagging technology to clean, format, anonymize, and annotate them algorithmically before feeding them to Pharos, a Semalytix proprietary data visualization and analysis platform, for further analysis. Pharos was used to generate descriptive data statistics, providing insights into the magnitude of individual patient experience variables, their differences in the magnitude of variables, and the associations between algorithmically tagged variables. Results: A total of 45,554 posts from 3834 individuals who were algorithmically identified as patients with lupus were included in this study. Among them, 1925 (authoring 5636 posts) and 106 (authoring 243 posts) patients were identified as having SLE and CLE, respectively. Patients frequently mentioned various symptoms in relation to SLE and CLE including pain, fatigue, and rashes; pain and fatigue were identified as the main drivers of HRQoL impairment. The most affected aspects of HRQoL included ?mobility,? ?cognitive capabilities,? ?recreation and leisure,? and ?sleep and rest.? Existing pharmacological interventions poorly managed the most burdensome symptoms of lupus. Conversely, nonpharmacological treatments, such as exercise and meditation, were frequently associated with HRQoL improvement. Conclusions: Patients with lupus reported a complex interplay of symptoms and HRQoL aspects that negatively influenced one another. This study demonstrates that social listening is an effective method to gather insights into patients? experiences, preferences, and unmet needs, which can be considered during the drug development process to develop effective therapies and improve disease management. UR - https://formative.jmir.org/2024/1/e52768 UR - http://dx.doi.org/10.2196/52768 UR - http://www.ncbi.nlm.nih.gov/pubmed/38306157 ID - info:doi/10.2196/52768 ER - TY - JOUR AU - Rotondi, J. Armando AU - Belnap, Herbeck Bea AU - Rothenberger, Scott AU - Feldman, Robert AU - Hanusa, Barbara AU - Rollman, L. Bruce PY - 2024/1/17 TI - Predictors of Use and Drop Out From a Web-Based Cognitive Behavioral Therapy Program and Health Community for Depression and Anxiety in Primary Care Patients: Secondary Analysis of a Randomized Controlled Trial JO - JMIR Ment Health SP - e52197 VL - 11 KW - e-mental health KW - user engagement KW - initiation KW - discontinue KW - depression KW - anxiety KW - cognitive behavioral therapy KW - computerized CBT KW - online health community KW - collaborative care KW - internet support group N2 - Background: A previously reported study examined the treatment of primary care patients with at least moderate severity depressive or anxiety symptoms via an evidence-based computerized cognitive behavioral therapy (CCBT) program (Beating the Blues) and an online health community (OHC) that included a moderated internet support group. The 2 treatment arms proved to be equally successful at 6-month follow-up. Objective: Although highly promising, e-mental health treatment programs have encountered high rates of noninitiation, poor adherence, and discontinuation. Identifying ways to counter these tendencies is critical for their success. To further explore these issues, this study identified the primary care patient characteristics that increased the chances patients would not initiate the use of an intervention, (ie, not try it even once), initiate use, and go on to discontinue or continue to use an intervention. Methods: The study had 3 arms: one received access to CCBT (n=301); another received CCBT plus OHC (n=302), which included a moderated internet support group; and the third received usual care (n=101). Participants in the 2 active intervention arms of the study were grouped together for analyses of CCBT use (n=603) because both arms had access to CCBT, and there were no differences in outcomes between the 2 arms. Analyses of OHC use were based on 302 participants who were randomized to that arm. Results: Several baseline patient characteristics were associated with failure to initiate the use of CCBT, including having worse physical health (measured by the Short Form Health Survey Physical Components Score, P=.01), more interference from pain (by the Patient-Reported Outcomes Measurement Information System Pain Interference score, P=.048), less formal education (P=.02), and being African American or another US minority group (P=.006). Characteristics associated with failure to initiate use of the OHC were better mental health (by the Short Form Health Survey Mental Components Score, P=.04), lower use of the internet (P=.005), and less formal education (P=.001). Those who initiated the use of the CCBT program but went on to complete less of the program had less formal education (P=.01) and lower severity of anxiety symptoms (P=.03). Conclusions: This study found that several patient characteristics predicted whether a patient was likely to not initiate use or discontinue the use of CCBT or OHC. These findings have clear implications for actionable areas that can be targeted during initial and ongoing engagement activities designed to increase patient buy-in, as well as increase subsequent use and the resulting success of eHealth programs. Trial Registration: ClinicalTrials.gov NCT01482806; https://clinicaltrials.gov/study/NCT01482806 UR - https://mental.jmir.org/2024/1/e52197 UR - http://dx.doi.org/10.2196/52197 UR - http://www.ncbi.nlm.nih.gov/pubmed/38231552 ID - info:doi/10.2196/52197 ER - TY - JOUR AU - Alwuqaysi, Bdour AU - Abdul-Rahman, Alfie AU - Borgo, Rita PY - 2024/1/16 TI - The Impact of Social Media Use on Mental Health and Family Functioning Within Web-Based Communities in Saudi Arabia: Ethnographic Correlational Study JO - JMIR Form Res SP - e44923 VL - 8 KW - social media use KW - mental health KW - family functioning N2 - Background: In recent years, increasing numbers of parents, activists, and decision-makers have raised concerns about the potential adverse effects of social media use on both mental health and family functioning. Although some studies have indicated associations between social media use and negative mental health outcomes, others have found no evidence of mental health harm. Objective: This correlation study investigated the interplay between social media use, mental health, and family functioning. Analyzing data from 314 users, this study explores diverse mental health outcomes. The study places particular emphasis on the Saudi Arabian sample, providing valuable insights into the cultural context and shedding light on the specific dynamics of social media?s impact on mental well-being and family dynamics in this demographic context. Methods: We collected data through a subsection of an anonymous web-based survey titled ?The Effect of COVID-19 on Social Media Usage, Mental Health, and Family Functioning.? The survey was distributed through diverse web-based platforms in Saudi Arabia, emphasizing the Saudi sample. The participants indicated their social media accounts and estimated their daily use. Mental health was assessed using the General Health Questionnaire and family functioning was evaluated using the Family Assessment Device Questionnaire. In addition, 6 mental health conditions (anxiety, self-esteem, depression, body dysmorphia, social media addiction, and eating disorders) were self-reported by participants. Results: The study demonstrates a pattern of frequent social media use, with a significant portion dedicating 3-5 hours daily for web-based activities, and most of the sample accessed platforms multiple times a day. Despite concerns about social media addiction and perceived unhealthiness, participants cited staying connected with friends and family as their primary motivation for social media use. WhatsApp was perceived as the most positively impactful, whereas TikTok was considered the most negative for our Saudi sample. YouTube, Instagram, and Snapchat users reported poorer mental health compared with nonusers of these platforms. Mental health effects encompassed anxiety and addiction, with age and gender emerging as significant factors. Associations between social media use and family functioning were evident, with higher social media quartiles correlating with a greater likelihood of mental health and unhealthy family functioning. Logistic regression identified age and gender as factors linked to affected mental health, particularly noting that female participants aged 25-34 years were found to be more susceptible to affected mental health. In addition, multivariable analysis identified age and social media use quartiles as factors associated with poor family functioning. Conclusions: This study examined how social media affects mental health and family functioning in Saudi Arabia. These findings underscore the need for culturally tailored interventions to address these challenges, considering diverse demographic needs. Recognizing these nuances can guide the development of interventions to promote digital well-being, acknowledging the importance of familial connections in Saudi society. UR - https://formative.jmir.org/2024/1/e44923 UR - http://dx.doi.org/10.2196/44923 UR - http://www.ncbi.nlm.nih.gov/pubmed/38227352 ID - info:doi/10.2196/44923 ER - TY - JOUR AU - Pearce, Emily AU - Raj, Hannah AU - Emezienna, Ngozika AU - Gilkey, B. Melissa AU - Lazard, J. Allison AU - Ribisl, M. Kurt AU - Savage, A. Sharon AU - Han, KJ Paul PY - 2024/1/15 TI - The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis JO - JMIR Infodemiology SP - e46693 VL - 4 KW - social media KW - medical uncertainty KW - telomere biology disorder KW - dyskeratosis congenita KW - social support N2 - Background: Social media has the potential to provide social support for rare disease communities; however, little is known about the use of social media for the expression of medical uncertainty, a common feature of rare diseases. Objective: This study aims to evaluate the expression of medical uncertainty on social media in the context of dyskeratosis congenita, a rare cancer-prone inherited bone marrow failure and telomere biology disorder (TBD). Methods: We performed a content analysis of uncertainty-related posts on Facebook and Twitter managed by Team Telomere, a patient advocacy group for this rare disease. We assessed the frequency of uncertainty-related posts, uncertainty sources, issues, and management and associations between uncertainty and social support. Results: Across all TBD social media platforms, 45.98% (1269/2760) of posts were uncertainty related. Uncertainty-related posts authored by Team Telomere on Twitter focused on scientific (306/434, 70.5%) or personal (230/434, 53%) issues and reflected uncertainty arising from probability, ambiguity, or complexity. Uncertainty-related posts in conversations among patients and caregivers in the Facebook community group focused on scientific (429/511, 84%), personal (157/511, 30.7%), and practical (114/511, 22.3%) issues, many of which were related to prognostic unknowns. Both platforms suggested uncertainty management strategies that focused on information sharing and community building. Posts reflecting response-focused uncertainty management strategies (eg, emotional regulation) were more frequent on Twitter compared with the Facebook community group (?21=3.9; P=.05), whereas posts reflecting uncertainty-focused management strategies (eg, ordering information) were more frequent in the Facebook community group compared with Twitter (?21=55.1; P<.001). In the Facebook community group, only 36% (184/511) of members created posts during the study period, and those who created posts did so with a low frequency (median 3, IQR 1-7 posts). Analysis of post creator characteristics suggested that most users of TBD social media are White, female, and parents of patients with dyskeratosis congenita. Conclusions: Although uncertainty is a pervasive and multifactorial issue in TBDs, our findings suggest that the discussion of medical uncertainty on TBD social media is largely limited to brief exchanges about scientific, personal, or practical issues rather than ongoing supportive conversation. The nature of uncertainty-related conversations also varied by user group: patients and caregivers used social media primarily to discuss scientific uncertainties (eg, regarding prognosis), form social connections, or exchange advice on accessing and organizing medical care, whereas Team Telomere used social media to express scientific and personal issues of uncertainty and to address the emotional impact of uncertainty. The higher involvement of female parents on TBD social media suggests a potentially greater burden of uncertainty management among mothers compared with other groups. Further research is needed to understand the dynamics of social media engagement to manage medical uncertainty in the TBD community. UR - https://infodemiology.jmir.org/2024/1/e46693 UR - http://dx.doi.org/10.2196/46693 UR - http://www.ncbi.nlm.nih.gov/pubmed/38224480 ID - info:doi/10.2196/46693 ER - TY - JOUR AU - Silver, A. Reginald AU - Johnson, Chandrika PY - 2023/12/20 TI - Health Information Seeking Behavior on Social Networking Sites and Self-Treatment: Pilot Survey Study JO - Online J Public Health Inform SP - e51984 VL - 15 KW - health care seeking behavior KW - online social networking KW - sociodemographic factors KW - community survey KW - logistic regression KW - self-treatment N2 - Background: Social networking site use and social network?based health information seeking behavior have proliferated to the point that the lines between seeking health information from credible social network?based sources and the decision to seek medical care or attempt to treat oneself have become blurred. Objective: We contribute to emerging research on health information seeking behavior by investigating demographic factors, social media use for health information seeking purposes, and the relationship between health information seeking and occurrences of self-treatment. Methods: Data were collected from an online survey in which participants were asked to describe sociodemographic factors about themselves, social media use patterns, perceptions about their motivations for health information seeking on social media platforms, and whether or not they attempted self-treatment after their social media?related health information seeking. We conducted a binomial logistic regression with self-treatment as a dichotomous categorical dependent variable. Results: Results indicate that significant predictors of self-treatment based on information obtained from social networking sites include race, exercise frequency, and degree of trust in the health-related information received. Conclusions: With an understanding of how sociodemographic factors might influence the decision to self-treat based on information obtained from social networking sites, health care providers can assist patients by educating them on credible social network?based sources of health information and discussing the importance of seeking medical advice from a health care provider. UR - https://ojphi.jmir.org/2023/1/e51984 UR - http://dx.doi.org/10.2196/51984 UR - http://www.ncbi.nlm.nih.gov/pubmed/38179207 ID - info:doi/10.2196/51984 ER - TY - JOUR AU - Daynes-Kearney, Rosemary AU - Gallagher, Stephen PY - 2023/12/13 TI - Online Support Groups for Family Caregivers: Scoping Review JO - J Med Internet Res SP - e46858 VL - 25 KW - caregivers KW - carer KW - caregiver KW - caregiving KW - informal care KW - family care KW - unpaid care KW - spousal care KW - carers KW - online support groups KW - scoping review KW - review methods KW - review methodology KW - social support KW - review KW - support KW - peer support KW - online support KW - development KW - communication KW - psychosocial KW - life experience KW - caregiver needs KW - engagement N2 - Background: Caregiving can affect people of all ages and can have significant negative health impacts on family caregivers themselves. Research has shown that social support acts as a buffer against many negative health impacts. A common source of social support is support groups. Although traditionally, these groups were conducted in a face-to-face setting, the advent of the internet, social media applications, and the smartphone have seen online support groups (OSGs) develop as a space where many caregivers seek support. The number of OSGs has increased exponentially, but there is no clear consensus on what factors or characteristics of OSGs contribute to social support development within them or what types of OSGs are available to family caregivers. Objective: This study aimed to conduct a scoping review to contribute to the understanding of the types and characteristics of OSGs for family caregivers. Methods: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, the CINAHL, PsychInfo, Psych Articles, Social Sciences, Communication Source, Medline, and Web of Science databases were searched for studies (caregiver focused, adults aged 18 years or older, online social support groups, caring for a living person, peer-reviewed journal publications on empirical research). In total, 19 studies were included in the review. The research questions were (1) what type of social support groups are online for adult family caregivers, (2) what the communication mediums and characteristics of these OSGs are, and (3) what psychosocial or other factors make OSGs successful or unsuccessful for participants. Results: In response to the first research question, we found that the majority of OSGs took place on public text-based forums and were illness specific. Where demographics were reported, participants were predominately women, White, and working with university-level education. There were a variety of caregiving relationships. For the second research question, the most common communication medium found was text-based communication, with the use of emojis, photos, and GIF (Graphics Interchange Format) files as part of these exchanges. Most frequently, the OSGs were asynchronous with a degree of anonymity, not time-limited by the frequency of contact or duration, and moderated by peer or professional moderators or facilitators. Results for the third research question explored the overarching categories of safe communication and engagement and group management. These described successful OSGs as having a focus on similar others with shared lived experiences communicated in a nonjudgmental space overseen by trained peer or professional facilitators. Conclusions: There are several key considerations for OSGs to be successful for family caregivers. A general recommendation for practitioners is to give importance to building active moderation and multifaceted structures of support to meet different levels of caregiver needs and the ability to engage. UR - https://www.jmir.org/2023/1/e46858 UR - http://dx.doi.org/10.2196/46858 UR - http://www.ncbi.nlm.nih.gov/pubmed/38090796 ID - info:doi/10.2196/46858 ER - TY - JOUR AU - Sharma, Pravesh AU - Tranby, Brianna AU - Kamath, Celia AU - Brockman, Tabetha AU - Roche, Anne AU - Hammond, Christopher AU - Brewer, C. LaPrincess AU - Sinicrope, Pamela AU - Lenhart, Ned AU - Quade, Brian AU - Abuan, Nate AU - Halom, Martin AU - Staples, Jamie AU - Patten, Christi PY - 2023/12/13 TI - A Christian Faith-Based Facebook Intervention for Smoking Cessation in Rural Communities (FAITH-CORE): Protocol for a Community Participatory Development Study JO - JMIR Res Protoc SP - e52398 VL - 12 KW - community KW - participatory KW - community-based participatory research KW - faith KW - smoking cessation KW - Facebook KW - social media KW - mobile phone N2 - Background: Tobacco smoking remains the leading cause of preventable morbidity and mortality in the United States, with significant rural-urban disparities. Adults who live in rural areas of the United States have among the highest tobacco smoking rates in the nation and experience a higher prevalence of smoking-related deaths and deaths due to chronic diseases for which smoking is a causal risk factor. Barriers to accessing tobacco use cessation treatments are a major contributing factor to these disparities. Adults living in rural areas experience difficulty accessing tobacco cessation services due to geographical challenges, lack of insurance coverage, and lack of health care providers who treat tobacco use disorders. The use of digital technology could be a practical answer to these barriers. Objective: This report describes a protocol for a study whose main objectives are to develop and beta test an innovative intervention that uses a private, moderated Facebook group platform to deliver peer support and faith-based cessation messaging to enhance the reach and uptake of existing evidence-based smoking cessation treatment (EBCT) resources (eg, state quitline coaching programs) for rural adults who smoke. Methods: We will use the Integrated Theory of Health Behavior Change, surface or deep structure frameworks to guide intervention development, and the community-based participatory research (CBPR) approach to identify and engage with community stakeholders. The initial content library of moderator postings (videos and text or image postings) will be developed using existing EBCT material from the Centers for Disease Control and Prevention Tips from Former Smokers Campaign. The content library will feature topics related to quitting smoking, such as coping with cravings and withdrawal and using EBCTs with faith-based message integration (eg, Bible quotes). A community advisory board and a community engagement studio will provide feedback to refine the content library. We will also conduct a beta test of the intervention with 15 rural adults who smoke to assess the recruitment feasibility and preliminary intervention uptake such as engagement, ease of use, usefulness, and satisfaction to further refine the intervention based on participant feedback. Results: The result of this study will create an intervention prototype that will be used for a future randomized controlled trial. Conclusions: Our CBPR project will create a prototype of a Facebook-delivered faith-based messaging and peer support intervention that may assist rural adults who smoke to use EBCT. This study is crucial in establishing a self-sufficient smoking cessation program for the rural community. The project is unique in using a moderated social media platform providing peer support and culturally relevant faith-based content to encourage adult people who smoke to seek treatment and quit smoking. International Registered Report Identifier (IRRID): PRR1-10.2196/52398 UR - https://www.researchprotocols.org/2023/1/e52398 UR - http://dx.doi.org/10.2196/52398 UR - http://www.ncbi.nlm.nih.gov/pubmed/38090799 ID - info:doi/10.2196/52398 ER - TY - JOUR AU - Wu, Nancy AU - Wang, Joanne Susan AU - Brazeau, Anne-Sophie AU - Chan, Deborah AU - Mussa, Joseph AU - Nakhla, Meranda AU - Elkeraby, Mariam AU - Ell, Maryna AU - Prevost, Melinda AU - Lepine, Laurie AU - Panagiotopoulos, Constadina AU - Mukerji, Geetha AU - Butalia, Sonia AU - Henderson, Mélanie AU - Da Costa, Deborah AU - Rahme, Elham AU - Dasgupta, Kaberi PY - 2023/12/12 TI - Supporting and Incentivizing Peer Leaders for an Internet-Based Private Peer Community for Youths With Type 1 Diabetes: Social Network and Directed Content Analysis JO - J Med Internet Res SP - e48267 VL - 25 KW - Facebook KW - chronic disease communities KW - internet-based communities KW - type 1 diabetes KW - adolescents KW - young adults KW - peer support N2 - Background: Youths with type 1 diabetes (T1D) frequently experience stigma. Internet-based peer communities can mitigate this through social support but require leaders to catalyze exchange. Whether nurturing potential leaders translates into a central role has not been well studied. Another issue understudied in such communities is lurking, the viewing of exchanges without commenting or posting. Objective: We aimed to assess the centrality of the peer leaders we selected, trained, and incentivized within the Canadian Virtual Peer Network (VPN)-T1D. This is a private Facebook (Meta Platforms, Inc) group that we created for persons aged 14 to 24 years with T1D. We specifically sought to (1) compare a quantitative estimate of network centrality between peer leaders and regular members, (2) assess the proportions of network exchanges that were social support oriented, and (3) assess proportions of high engagement (posts, comments, reactions, and votes) and low engagement (lurking) exchanges. Methods: We recruited peer leaders and members with T1D from prior study cohorts and clinics. We trained 10 leaders, provided them with a monthly stipend, and encouraged them to post on the private Facebook group we launched on June 21, 2017. We extracted all communications (posts, messages, reactions, polls, votes, and views) that occurred until March 20, 2020. We calculated each member?s centrality (80% of higher engagement communications comprising posts, comments, and reactions plus 20% of members with whom they connected). We divided each member?s centrality by the highest centrality to compute the relative centrality, and compared the mean values between leaders and members (linear regression). We calculated the proportions of communications that were posts, comments, reactions, and views without reaction. We performed content analysis with a social support framework (informational, emotional, esteem-related, network, and tangible support), applying a maximum of 3 codes per communication. Results: VPN-T1D gained 212 regular members and 10 peer leaders over 33 months; of these 222 members, 26 (11.7%) exited. Peer leaders had 10-fold higher relative centrality than regular members (mean 0.53, SD 0.26 vs mean 0.04, SD 0.05; 0.49 difference; 95% CI 0.44-0.53). Overall, 91.4% (203/222) of the members connected at least once through posts, comments, or reactions. Among the 75,051 communications, there were 5109 (6.81%) posts, comments, and polls, 6233 (8.31%) reactions, and 63,709 (84.9%) views (lurking). Moreover, 54.9% (3430/6253) of codes applied were social support related, 66.4% (2277/3430) of which were informational (eg, insurance and travel preparation), and 20.4% (699/3430) of which were esteem related (eg, relieving blame). Conclusions: Designating, training, and incentivizing peer leaders may stimulate content exchange and creation. Social support was a key VPN-T1D deliverable. Although lurking accounted for a high proportion of the overall activity, even those demonstrating this type of passive participation likely derived benefits, given that the network exit rate was low. International Registered Report Identifier (IRRID): RR2-10.2196/18714 UR - https://www.jmir.org/2023/1/e48267 UR - http://dx.doi.org/10.2196/48267 UR - http://www.ncbi.nlm.nih.gov/pubmed/38085568 ID - info:doi/10.2196/48267 ER - TY - JOUR AU - Li, Xiaoyu Jenny AU - Yacyshyn, Elaine PY - 2023/12/12 TI - Thoughts and Experiences of Behçet Disease From Participants on a Reddit Subforum: Qualitative Online Community Analysis JO - JMIR Form Res SP - e49380 VL - 7 KW - Bechet disease KW - Behçet KW - online community KW - Reddit KW - vasculitis KW - quality of life KW - QoL KW - qualitative KW - community KW - morbidity KW - support KW - diagnosis KW - symptoms KW - vascular KW - vascular system KW - vascular disease N2 - Background: Behçet disease (BD) is a type of vasculitis with relapsing episodes and multisystemic clinical features, associated with significant morbidity and impact on patients? lives. People affected by BD often participate in discussions of their illness experiences. In-person support groups have limited physical accessibility and a relative lack of anonymity; however, online communities have become increasingly popular. Objective: This study investigates the perspectives and experiences of people affected by BD by examining the content shared and discussed on a subforum of the website Reddit?a popular online space for anonymous discussions. Methods: All discussion threads posted between March 9, 2021, and March 12, 2022, including posts and comments, were examined from the subforum ?r/Behcets,? an anonymous online community of 1100 members as of March 2022. A Grounded Theory analysis was completed to identify themes and subthemes, and notable quotes were extracted from the threads. Parameters extracted from each post included the number of comments, net upvotes, category, and subcategories. Two research team members read the posts separately to identify initial codes and themes to ensure data saturation was achieved. Results: Six recurring themes were identified: (1) finding connectedness and perspectives through shared experiences, (2) struggles of the diagnostic odyssey, (3) sharing or inquiring about symptoms, (4) expressing strong emotions relating to the experience of BD, (5) the impact of BD on quality of life and personal relationships, as well as (6) COVID-19 and the COVID-19 vaccination in relation to BD. Subthemes within each theme were also identified and explored. Conclusions: This novel study provides a qualitative exploration of the perspectives and experiences of people affected by BD, shared in the anonymous and accessible online community of Reddit. The study found that people impacted by an illness seek to connect and receive validation through shared conditions and experiences. By examining the content shared in r/Behcets, this study highlights the needs of people affected by BD, identifying gaps and areas for improvement in the in-person support they receive. UR - https://formative.jmir.org/2023/1/e49380 UR - http://dx.doi.org/10.2196/49380 UR - http://www.ncbi.nlm.nih.gov/pubmed/38085563 ID - info:doi/10.2196/49380 ER - TY - JOUR AU - Davila, Carine AU - Chan, H. Stephanie AU - Gosline, Anna AU - Arenas, Zamawa AU - Kavanagh, Jane AU - Feltz, Brian AU - McCarthy, Elizabeth AU - Pitts, Tyrone AU - Ritchie, Christine PY - 2023/12/6 TI - Online Forums as a Tool for Broader Inclusion of Voices on Health Care Communication Experiences and Serious Illness Care: Mixed Methods Study JO - J Med Internet Res SP - e48550 VL - 25 KW - serious illness care KW - serious illness communication KW - mixed methods research KW - community-engaged design KW - equity in research KW - online forum KW - health care experiences KW - internet KW - illness KW - marginalized community KW - efficacy KW - communication KW - engagement KW - quantitative survey KW - health care N2 - Background: Existing health care research, including serious illness research, often underrepresents individuals from historically marginalized communities. Capturing the nuanced perspectives of individuals around their health care communication experiences is difficult. New research strategies are needed that increase engagement of individuals from diverse backgrounds. Objective: The aim of this study was to develop a mixed methods approach with qualitative online forums to better understand health communication experiences of individuals, including people from groups historically marginalized such as Black and Latino individuals; older adults; and people with low income, disability, or serious illness. Methods: We used a multiphase mixed methods, community-informed research approach to design study instruments and engage participants. We engaged a diverse group of collaborators with lived experience of navigating the health care system who provided feedback on instruments, added concepts for testing, and offered guidance on creating a safe experience for participants (phase 1). We conducted a national quantitative survey between April and May 2021 across intrapersonal, interpersonal, and systems-level domains, with particular focus on interpersonal communication between patients and clinicians (phase 2). We conducted two asynchronous, qualitative online forums, a technique used in market research, between June and August 2021, which allowed us to contextualize the learnings and test concepts and messages (phase 3). Using online forums allowed us to probe more deeply into results and hypotheses from the survey to better understand the ?whys? and ?whats? that surfaced and to test public messages to encourage action around health. Results: We engaged 46 community partners, including patients and clinicians from a Federally Qualified Health Center, to inform study instrument design. In the quantitative survey, 1854 adults responded, including 50.5% women, 25.2% individuals over 65 years old, and 51.9% individuals with low income. Nearly two-thirds identified as non-Hispanic white (65.7%), 10.4% identified as non-Hispanic Black, and 15.5% identified as Hispanic/Latino. An additional 580 individuals participated in online forums, including 60.7% women, 17.4% individuals over 65 years old, and 49.0% individuals with low income. Among the participants, 70.3% identified as non-Hispanic white, 16.0% as non-Hispanic Black, and 9.5% as Hispanic/Latino. We received rich, diverse input from our online forum participants, and they highlighted satisfaction and increased knowledge with engagement in the forums. Conclusions: We achieved modest overrepresentation of people who were over 65 years old, identified as non-Hispanic Black, and had low income in our online forums. The size of the online forums (N=580) reflected the voices of 93 Black and 55 Hispanic/Latino participants. Individuals who identify as Hispanic/Latino remained underrepresented, likely because the online forums were offered only in English. Overall, our findings demonstrate the feasibility of using the online forum qualitative approach in a mixed methods study to contextualize, clarify, and expound on quantitative findings when designing public health and clinical communications interventions. UR - https://www.jmir.org/2023/1/e48550 UR - http://dx.doi.org/10.2196/48550 UR - http://www.ncbi.nlm.nih.gov/pubmed/38055311 ID - info:doi/10.2196/48550 ER - TY - JOUR AU - Kim, Seoyun AU - Cha, Junyeop AU - Kim, Dongjae AU - Park, Eunil PY - 2023/11/30 TI - Understanding Mental Health Issues in Different Subdomains of Social Networking Services: Computational Analysis of Text-Based Reddit Posts JO - J Med Internet Res SP - e49074 VL - 25 KW - mental health KW - sentiment analysis KW - mental disorder KW - text analysis KW - NLP KW - natural language processing KW - clustering N2 - Background: Users increasingly use social networking services (SNSs) to share their feelings and emotions. For those with mental disorders, SNSs can also be used to seek advice on mental health issues. One available SNS is Reddit, in which users can freely discuss such matters on relevant health diagnostic subreddits. Objective: In this study, we analyzed the distinctive linguistic characteristics in users? posts on specific mental disorder subreddits (depression, anxiety, bipolar disorder, borderline personality disorder, schizophrenia, autism, and mental health) and further validated their distinctiveness externally by comparing them with posts of subreddits not related to mental illness. We also confirmed that these differences in linguistic formulations can be learned through a machine learning process. Methods: Reddit posts uploaded by users were collected for our research. We used various statistical analysis methods in Linguistic Inquiry and Word Count (LIWC) software, including 1-way ANOVA and subsequent post hoc tests, to see sentiment differences in various lexical features within mental health?related subreddits and against unrelated ones. We also applied 3 supervised and unsupervised clustering methods for both cases after extracting textual features from posts on each subreddit using bidirectional encoder representations from transformers (BERT) to ensure that our data set is suitable for further machine learning or deep learning tasks. Results: We collected 3,133,509 posts of 919,722 Reddit users. The results using the data indicated that there are notable linguistic differences among the subreddits, consistent with the findings of prior research. The findings from LIWC analyses revealed that patients with each mental health issue show significantly different lexical and semantic patterns, such as word count or emotion, throughout their online social networking activities, with P<.001 for all cases. Furthermore, distinctive features of each subreddit group were successfully identified through supervised and unsupervised clustering methods, using the BERT embeddings extracted from textual posts. This distinctiveness was reflected in the Davies-Bouldin scores ranging from 0.222 to 0.397 and the silhouette scores ranging from 0.639 to 0.803 in the former case, with scores of 1.638 and 0.729, respectively, in the latter case. Conclusions: By taking a multifaceted approach, analyzing textual posts related to mental health issues using statistical, natural language processing, and machine learning techniques, our approach provides insights into aspects of recent lexical usage and information about the linguistic characteristics of patients with specific mental health issues, which can inform clinicians about patients? mental health in diagnostic terms to aid online intervention. Our findings can further promote research areas involving linguistic analysis and machine learning approaches for patients with mental health issues by identifying and detecting mentally vulnerable groups of people online. UR - https://www.jmir.org/2023/1/e49074 UR - http://dx.doi.org/10.2196/49074 UR - http://www.ncbi.nlm.nih.gov/pubmed/38032730 ID - info:doi/10.2196/49074 ER - TY - JOUR AU - Thornton, Christopher AU - Lanyi, Kate AU - Wilkins, Georgina AU - Potter, Rhiannon AU - Hunter, Emily AU - Kolehmainen, Niina AU - Pearson, Fiona PY - 2023/11/28 TI - Scoping the Priorities and Concerns of Parents: Infodemiology Study of Posts on Mumsnet and Reddit JO - J Med Internet Res SP - e47849 VL - 25 KW - childhood KW - child KW - toddler KW - infant KW - behavior KW - parent KW - parenting KW - topic modeling KW - data mining KW - social media KW - infodemiology KW - Reddit KW - web-based forum KW - well-being KW - children KW - data KW - family health N2 - Background: Health technology innovation is increasingly supported by a bottom-up approach to priority setting, aiming to better reflect the concerns of its intended beneficiaries. Web-based forums provide parents with an outlet to share concerns, advice, and information related to parenting and the health and well-being of their children. They provide a rich source of data on parenting concerns and priorities that could inform future child health research and innovation. Objective: The aim of the study is to identify common concerns expressed on 2 major web-based forums and cluster these to identify potential family health concern topics as indicative priority areas for future research and innovation. Methods: We text-mined the r/Parenting subreddit (69,846 posts) and the parenting section of Mumsnet (99,848 posts) to create a large corpus of posts. A generative statistical model (latent Dirichlet allocation) was used to identify the most discussed topics in the corpus, and content analysis was applied to identify the parenting concerns found in a subset of posts. Results: A model with 25 topics produced the highest coherence and a wide range of meaningful parenting concern topics. The most frequently expressed parenting concerns are related to their child?s sleep, self-care, eating (and food), behavior, childcare context, and the parental context including parental conflict. Topics directly associated with infants, such as potty training and bottle feeding, were more common on Mumsnet, while parental context and screen time were more common on r/Parenting. Conclusions: Latent Dirichlet allocation topic modeling can be applied to gain a rapid, yet meaningful overview of parent concerns expressed on a large and diverse set of social media posts and used to complement traditional insight gathering methods. Parents framed their concerns in terms of children?s everyday health concerns, generating topics that overlap significantly with established family health concern topics. We provide evidence of the range of family health concerns found at these sources and hope this can be used to generate material for use alongside traditional insight gathering methods. UR - https://www.jmir.org/2023/1/e47849 UR - http://dx.doi.org/10.2196/47849 UR - http://www.ncbi.nlm.nih.gov/pubmed/38015600 ID - info:doi/10.2196/47849 ER - TY - JOUR AU - Yang, Jinqing AU - Liu, Zhifeng AU - Wang, Qicong AU - Lu, Na PY - 2023/11/17 TI - Factors Influencing the Answerability and Popularity of a Health-Related Post in the Question-and-Answer Community: Infodemiology Study of Metafilter JO - J Med Internet Res SP - e48858 VL - 25 KW - user behavior KW - dynamic network analysis KW - health consultation KW - health question and answers community KW - question-and-answer KW - Q&A KW - negative binomial regression N2 - Background: The web-based health question-and-answer (Q&A) community has become the primary and handy way for people to access health information and knowledge directly. Objective: The objective of our study is to investigate how content-related, context-related, and user-related variables influence the answerability and popularity of health-related posts based on a user-dynamic, social network, and topic-dynamic semantic network, respectively. Methods: Full-scale data on health consultations were acquired from the Metafilter Q&A community. These variables were designed in terms of context, content, and contributors. Negative binomial regression models were used to examine the influence of these variables on the favorite and comment counts of a health-related post. Results: A total of 18,099 post records were collected from a well-known Q&A community. The findings of this study include the following. Content-related variables have a strong impact on both the answerability and popularity of posts. Notably, sentiment values were positively related to favorite counts and negatively associated with comment counts. User-related variables significantly affected the answerability and popularity of posts. Specifically, participation intensity was positively related to comment count and negatively associated with favorite count. Sociability breadth only had a significant impact on comment count. Context-related variables have a more substantial influence on the popularity of posts than on their answerability. The topic diversity variable exhibits an inverse correlation with the comment count while manifesting a positive correlation with the favorite count. Nevertheless, topic intensity has a significant effect only on favorite count. Conclusions: The research results not only reveal the factors influencing the answerability and popularity of health-related posts, which can help them obtain high-quality answers more efficiently, but also provide a theoretical basis for platform operators to enhance user engagement within health Q&A communities. UR - https://www.jmir.org/2023/1/e48858 UR - http://dx.doi.org/10.2196/48858 UR - http://www.ncbi.nlm.nih.gov/pubmed/37976090 ID - info:doi/10.2196/48858 ER - TY - JOUR AU - Ni, Congning AU - Song, Qingyuan AU - Malin, Bradley AU - Song, Lijun AU - Commiskey, Patricia AU - Stratton, Lauren AU - Yin, Zhijun PY - 2023/11/17 TI - Examining Online Behaviors of Adult-Child and Spousal Caregivers for People Living With Alzheimer Disease or Related Dementias: Comparative Study in an Open Online Community JO - J Med Internet Res SP - e48193 VL - 25 KW - Alzheimer disease or related dementias KW - informal caregivers KW - adult-child caregivers KW - spousal caregivers KW - online community KW - sentiment analysis KW - topic modeling KW - text classification N2 - Background: Alzheimer disease or related dementias (ADRD) are severe neurological disorders that impair the thinking and memory skills of older adults. Most persons living with dementia receive care at home from their family members or other unpaid informal caregivers; this results in significant mental, physical, and financial challenges for these caregivers. To combat these challenges, many informal ADRD caregivers seek social support in online environments. Although research examining online caregiving discussions is growing, few investigations have distinguished caregivers according to their kin relationships with persons living with dementias. Various studies have suggested that caregivers in different relationships experience distinct caregiving challenges and support needs. Objective: This study aims to examine and compare the online behaviors of adult-child and spousal caregivers, the 2 largest groups of informal ADRD caregivers, in an open online community. Methods: We collected posts from ALZConnected, an online community managed by the Alzheimer?s Association. To gain insights into online behaviors, we first applied structural topic modeling to identify topics and topic prevalence between adult-child and spousal caregivers. Next, we applied VADER (Valence Aware Dictionary for Sentiment Reasoning) and LIWC (Linguistic Inquiry and Word Count) to evaluate sentiment changes in the online posts over time for both types of caregivers. We further built machine learning models to distinguish the posts of each caregiver type and evaluated them in terms of precision, recall, F1-score, and area under the precision-recall curve. Finally, we applied the best prediction model to compare the temporal trend of relationship-predicting capacities in posts between the 2 types of caregivers. Results: Our analysis showed that the number of posts from both types of caregivers followed a long-tailed distribution, indicating that most caregivers in this online community were infrequent users. In comparison with adult-child caregivers, spousal caregivers tended to be more active in the community, publishing more posts and engaging in discussions on a wider range of caregiving topics. Spousal caregivers also exhibited slower growth in positive emotional communication over time. The best machine learning model for predicting adult-child, spousal, or other caregivers achieved an area under the precision-recall curve of 81.3%. The subsequent trend analysis showed that it became more difficult to predict adult-child caregiver posts than spousal caregiver posts over time. This suggests that adult-child and spousal caregivers might gradually shift their discussions from questions that are more directly related to their own experiences and needs to questions that are more general and applicable to other types of caregivers. Conclusions: Our findings suggest that it is important for researchers and community organizers to consider the heterogeneity of caregiving experiences and subsequent online behaviors among different types of caregivers when tailoring online peer support to meet the specific needs of each caregiver group. UR - https://www.jmir.org/2023/1/e48193 UR - http://dx.doi.org/10.2196/48193 UR - http://www.ncbi.nlm.nih.gov/pubmed/37976095 ID - info:doi/10.2196/48193 ER - TY - JOUR AU - Al-Rawi, Ahmed AU - Blackwell, Breanna AU - Zemenchik, Kiana AU - Lee, Kelley PY - 2023/11/10 TI - Twitter Misinformation Discourses About Vaping: Systematic Content Analysis JO - J Med Internet Res SP - e49416 VL - 25 KW - vaping KW - e-cigarette KW - smoking KW - misinformation KW - fact checking KW - social media KW - Twitter KW - nicotine KW - content analysis KW - fact-checking KW - disinformation KW - weaponized KW - health risk KW - risk KW - health education KW - education KW - communication KW - electronic nicotine delivery systems KW - ENDS N2 - Background: While there has been substantial analysis of social media content deemed to spread misinformation about electronic nicotine delivery systems use, the strategic use of misinformation accusations to undermine opposing views has received limited attention. Objective: This study aims to fill this gap by analyzing how social media users discuss the topic of misinformation related to electronic nicotine delivery systems, notably vaping products. Additionally, this study identifies and analyzes the actors commonly blamed for spreading such misinformation and how these claims support both the provaping and antivaping narratives. Methods: Using Twitter?s (subsequently rebranded as X) academic application programming interface, we collected tweets referencing #vape and #vaping and keywords associated with fake news and misinformation. This study uses systematic content analysis to analyze the tweets and identify common themes and actors who discuss or possibly spread misinformation. Results: This study found that provape users dominate the platform regarding discussions about misinformation about vaping, with provaping tweets being more frequent and having higher overall user engagement. The most common narrative for provape tweets surrounds the conversation of vaping being perceived as safe. On the other hand, the most common topic from the antivape narrative is that vaping is indeed harmful. This study also points to a general distrust in authority figures, with news outlets, public health authorities, and political actors regularly accused of spreading misinformation, with both placing blame. However, specific actors differ depending on their positionalities. The vast number of accusations from provaping advocates is found to shape what is considered misinformation and works to silence other narratives. Additionally, allegations against reliable and proven sources, such as public health authorities, work to discredit assessments about the health impacts, which is detrimental to public health overall for both provaping and antivaping advocates. Conclusions: We conclude that the spread of misinformation and the accusations of misinformation dissemination using terms such as ?fact check,? ?misinformation,? ?fake news,? and ?disinformation? have become weaponized and co-opted by provaping actors to delegitimize criticisms about vaping and to increase confusion about the potential health risks. The study discusses the mixed types of impact of vaping on public health for both smokers and nonsmokers. Additionally, we discuss the implications for effective health education and communication about vaping and how misinformation claims can affect evidence-based discourse on Twitter as well as informed vaping decisions. UR - https://www.jmir.org/2023/1/e49416 UR - http://dx.doi.org/10.2196/49416 UR - http://www.ncbi.nlm.nih.gov/pubmed/37948118 ID - info:doi/10.2196/49416 ER - TY - JOUR AU - Peri?, Zinaida AU - Basak, Grzegorz AU - Koenecke, Christian AU - Moiseev, Ivan AU - Chauhan, Jyoti AU - Asaithambi, Sathyaraj AU - Sagkriotis, Alexandros AU - Gunes, Sibel AU - Penack, Olaf PY - 2023/11/10 TI - Understanding the Needs and Lived Experiences of Patients With Graft-Versus-Host Disease: Real-World European Public Social Media Listening Study JO - JMIR Cancer SP - e42905 VL - 9 KW - graft-versus-host disease KW - GVHD KW - infoveillance KW - patient journey KW - quality of life KW - real-world evidence KW - social media listening KW - social media N2 - Background: Graft-versus-host disease (GVHD) is the major cause of short- and long-term morbidity and mortality after allogeneic hematopoietic stem cell transplantation. Treatment options beyond corticosteroid therapy remain limited, and prolonged treatment often leads to impaired quality of life (QoL). A better understanding of the needs and experiences of patients with GVHD is required to improve patient care. Objective: The aim of this study is to explore different social media (SM) channels for gathering and analyzing the needs and experiences of patients and other stakeholders across 14 European countries. Methods: We conducted a retrospective analysis of SM data from the public domain. The Talkwalker social analytics tool collected data from open-access forums, blogs, and various social networking sites using predefined search strings. The raw data set derived from the aggregator tool was automatically screened for the relevancy of posts, generating the curated data set that was manually reviewed to identify posts that fell within the predefined inclusion and exclusion criteria. This final data set was then used for the deep-dive analysis. Results: A total of 9016 posts relating to GVHD were identified between April 2019 and April 2021. Deduplication and relevancy checks resulted in 325 insightful posts, with Twitter contributing 250 (77%) posts; blogs, 49 (15%) posts; forums, 13 (4%) posts; Facebook, 7 (2%) posts; and Instagram and YouTube, 4 (1%) posts. Patients with GVHD were the primary stakeholders, contributing 63% of all SM posts. In 234 posts, treatment was the most discussed stage of the patient journey (68%), followed by symptoms (33%), and diagnosis and tests (21%). Among treatment-related posts (n=159), steroid therapy was most frequently reported (54/159, 34%). Posts relating to treatment features (n=110) identified efficacy (45/110, 41%), side effects (38/110, 35%), and frequency and dosage (32/110, 29%), as the most frequently discussed features. Symptoms associated with GVHD were described in 24% (77/325) of posts, including skin-related conditions (49/77, 64%), dry eyes or vision change (13/77, 17%), pain and cramps (16/77, 21%), and fatigue or muscle weakness (12/77, 16%). The impacts of GVHD on QoL were discussed in 51% (165/325) of all posts, with the emotional, physical and functional, social, and financial impacts mentioned in 69% (114/165), 50% (82/165), 5% (8/165), and 2% (3/165) of these posts, respectively. Unmet needs were reported by patients or caregivers in 24% (77/325) of analyzed conversations, with treatment-related side effects being the most common (35/77, 45%) among these posts. Conclusions: SM listening is a useful tool to identify medical needs. Treatment of GVHD, including treatment-related side effects, as well as its emotional and physical impact on QoL, are the major topics that GVHD stakeholders mention on SM. We encourage a structured discussion of these topics in interactions between health care providers and patients with GVHD. Trial Registration: Not applicable UR - https://cancer.jmir.org/2023/1/e42905 UR - http://dx.doi.org/10.2196/42905 UR - http://www.ncbi.nlm.nih.gov/pubmed/37948101 ID - info:doi/10.2196/42905 ER - TY - JOUR AU - Archibald, Mandy AU - Makinde, Sharifat AU - Tongol, Nicole AU - Levasseur-Puhach, Sydney AU - Roos, Leslie PY - 2023/11/7 TI - Experiences and Priorities in Youth and Family Mental Health: Protocol for an Arts-Based Priority-Setting Focus Group Study JO - JMIR Res Protoc SP - e50208 VL - 12 KW - arts-based methods KW - priority setting KW - mental health KW - eHealth KW - arts-based KW - art-based KW - preference KW - preferences KW - perspective KW - perspectives KW - opinion KW - opinions KW - youth KW - adolescent KW - adolescents KW - immigrant KW - immigrants KW - native KW - natives KW - aboriginal KW - aboriginals KW - Indigenous KW - digital health KW - telehealth KW - telemedicine N2 - Background: During the COVID-19 pandemic, eHealth services enabled providers to reach families despite widespread social distancing restrictions. However, their rapid adoption often occurred without community partners? involvement and without an understanding of how they prioritize aspects of their mental health and associated service provision, both of which promote family and community-centered health care delivery. Establishing priorities in health care is essential for developing meaningful and reliable health services. As such, there is an urgent need to understand how eHealth service users, especially families who may have historically faced oppression and systemic barriers to service access, can best benefit from them. Arts-based approaches can elicit an understanding of priorities by providing an engaging and expressive means of moving beyond readily expressible discursive language and stimulating meaningful dialogue reflective of participants? lived experiences. Objective: The purpose of this research is to determine the priorities and preferences of youth; parents or caregivers; newcomers and immigrants; and Indigenous community members regarding the use of eHealth in supporting their mental health using an innovative arts-based priority-setting method. Methods: This study uses a mixed-methods approach combining qualitative, quantitative, and arts-based research. It follows a survey used to identify key knowledge partners who are interested in improving eHealth services for mental health support in Manitoba, Canada. Knowledge partners interested in group-based priority setting will be contacted to participate. We will facilitate approximately two focus groups across each subgroup of youth, parents or caregivers, newcomers or immigrants, and Indigenous community members using an integrative, quantitatively anchored arts-based method termed the ?Circle of Importance? to understand participants? mental health priorities and how eHealth or technology may support their mental well-being. The Circle of Importance involves placing small objects, whose meaning is determined by participants, on a visual board with concentric circles that correspond to a 5-point Likert scale of importance. Following each focus group, we will evaluate participants? and focus group facilitators? experiences of the Circle of Importance using a survey and follow-up structured in-person interviews to garner how we can improve the arts-based approach used in the focus groups. Results: The PRIME (Partnering for Research Innovation in Mental Health through eHealth Excellence) theme received institutional ethics approval on August 23, 2023. Data collection is projected for August 2023, with follow-up focus groups occurring in early 2024 as required. Data analysis will occur immediately following data collection. Conclusions: Findings will directly inform a multiyear applied research agenda for PRIME aimed at improving mental health services through engaging key knowledge partners. The results may inform how arts-based methods in a priority setting can reflect aspects of experience beyond the capacities of qualitative or quantitative methods alone, and whether this approach aligns well with a positive experience of research participation. International Registered Report Identifier (IRRID): PRR1-10.2196/50208 UR - https://www.researchprotocols.org/2023/1/e50208 UR - http://dx.doi.org/10.2196/50208 UR - http://www.ncbi.nlm.nih.gov/pubmed/37934557 ID - info:doi/10.2196/50208 ER - TY - JOUR AU - Foley, Gillian AU - Ricciardelli, Rosemary PY - 2023/11/6 TI - Views on the Functionality and Use of the PeerConnect App Among Public Safety Personnel: Qualitative Analysis JO - JMIR Form Res SP - e46968 VL - 7 KW - peer support KW - apps KW - mobile health technology KW - mobile health KW - mHealth KW - public safety personnel KW - correctional workers KW - police officers KW - emergency workers KW - first responders KW - mental health KW - Canada KW - digital health KW - intervention KW - peers KW - mobile app KW - peer support apps KW - web-based KW - web-based communities N2 - Background: Research supports that public safety personnel (PSP) are regularly exposed to potentially psychologically traumatic events and occupational stress, which can compromise their well-being. To help address PSP well-being and mental health, peer support is increasingly being adopted (and developed) in PSP organizations. Peer support apps have been developed to connect the peer and peer supporter anonymously and confidentially, but little is known about their effectiveness, utility, and uptake. Objective: We designed this study to evaluate the functionality and use of the PeerConnect app, which is a vehicle for receiving and administering peer support. The app connects peers but also provides information (eg, mental health screening tools, newsfeed) to users; thus, we wanted to understand why PSP adopted or did not adopt the app and the app?s perceived utility. Our intention was to determine if the app served the purpose of connectivity for PSP organizations implementing peer support. Methods: A sample of PSP (N=23) participated in an interview about why they used or did not use the app. We first surveyed participants across PSP organizations in Ontario, Canada, and at the end of the survey invited participants to participate in a follow-up interview. Of the 23 PSP interviewed, 16 were PeerConnect users and 7 were nonusers. After transcribing all audio recordings of the interviews, we used an emergent theme approach to analyze themes within and across responses. Results: PSP largely viewed PeerConnect positively, with the Connect feature being most popular (this feature facilitated peer support), followed by the Newsfeed and Resources. App users appreciated the convenience of the app and felt the app helped reduce the stigma around peer support use and pressure on peer supporters while raising awareness of wellness. PSP who did not use the app attributed their nonuse to disinterest or uncertainty about the need for a peer support app and the web-based nature of the app. To increase app adoption, participants recommended increased communication and promotion of the app by the services and continued efforts to combat mental health stigma. Conclusions: We provide contextual information about a peer support app?s functionality and use. Our findings demonstrate that PSP are open to the use of mental health and peer support apps, but more education is required to reduce mental health stigma. Future research should continue to evaluate peer support apps for PSP to inform their design and ensure they are fulfilling their purpose. UR - https://formative.jmir.org/2023/1/e46968 UR - http://dx.doi.org/10.2196/46968 UR - http://www.ncbi.nlm.nih.gov/pubmed/37930765 ID - info:doi/10.2196/46968 ER - TY - JOUR AU - Lindner, R. Jacek AU - Ebrahimi, Ashkan AU - Kochanowicz, F. Julian AU - Szczupak, Justyna AU - Paris, Timothy AU - Abdelsamie, Ahmed AU - Parikh, V. Sagar AU - McShane, Rupert AU - Costi, Sara PY - 2023/11/1 TI - Preliminary Evaluation of a Web-Based International Journal Club for Ketamine in Psychiatric Disorders: Cross-Sectional Survey Study JO - JMIR Med Educ SP - e46158 VL - 9 KW - web-based journal club KW - journal club KW - remote learning KW - ketamine KW - medical education KW - web-based KW - survey KW - COVID-19 KW - psychiatry KW - evaluation KW - YouTube KW - networking KW - internet KW - format N2 - Background: The use of novel rapid-acting antidepressants for psychiatric disorders is expanding. The web-based Ketamine and Related Compounds International Journal Club (KIJC) was created during the COVID-19 pandemic by UK academic psychiatrists and trainees for interested global professionals to discuss papers related to the topic of ketamine for the treatment of psychiatric disorders. The KIJC aimed to facilitate bidirectional discussions, sharing of ideas, and networking among participants. Objective: The aim of this study is a preliminary evaluation of the journal club?s format for satisfaction and impact after the first year of running. Methods: A website, email, and word of mouth were used for recruitment. The journal club was held twice per month using videoconferencing software in 3 parts: a 20-minute presentation, a 15-minute chaired question and answer session, and a 25-minute informal discussion with participants? cameras on. The first 2 parts were recorded and uploaded to the website alongside links to the corresponding papers. In total, 24 speakers presented from 8 countries, typically within 2 (SD 2) months of publication. The average attendance was 51 (SD 20) audience members, and there were 63 (SD 50) views of each subsequent recording. Two anonymous web-based cross-sectional surveys were conducted from November 2021 to February 2022, one for speakers and another for audience members, separately. Various survey statements, 14 for speakers and 12 for the audience, were categorized according to satisfaction and impact, alongside obtaining participants? primary career roles and requesting optional written feedback. Responses were compared between both groups and analyzed, including an inductive thematic analysis and a summary of lessons learned. Results: A total of 30 survey responses were obtained, demonstrating overall agreement with the statements. In total, 12 (50%) out of 24 speakers and 18 (35%) out of an average of 51 (SD 20) audience members regarded the journal club?s format as satisfying and impactful. The majority (26/30, 87%) of respondents identified as clinicians (9/30, 30%), researchers (9/30, 30%), and clinician-researchers (8/30, 27%). Additionally, 11 (37%) of the 30 respondents also provided optional written feedback: 3 (10%) speakers and 8 (27%) audience members. From the written feedback, 5 main themes were derived: engagement with the journal club, desire for active participation, improving the platform, positive learning experiences, and suggestions for future sessions. Conclusions: The journal club successfully reached its intended audience and developed into a web-based community. The majority of the participants were satisfied with the format and found it impactful. Overall, the journal club appears to be a valuable tool for knowledge sharing and community building in the field of ketamine use for the treatment of psychiatric disorders. A larger sample size and additional testing methods are required to support the generalizability of the journal club?s format. UR - https://mededu.jmir.org/2023/1/e46158 UR - http://dx.doi.org/10.2196/46158 UR - http://www.ncbi.nlm.nih.gov/pubmed/37910164 ID - info:doi/10.2196/46158 ER - TY - JOUR AU - Nicmanis, Mitchell AU - Chur-Hansen, Anna AU - Linehan, Karen PY - 2023/11/1 TI - The Information Needs and Experiences of People Living With Cardiac Implantable Electronic Devices: Qualitative Content Analysis of Reddit Posts JO - JMIR Cardio SP - e46296 VL - 7 KW - implantable cardioverter defibrillator KW - pacemaker KW - cardiac resynchronization therapy KW - social media KW - patients KW - peer support KW - content analysis KW - experiences N2 - Background: Cardiac implantable electronic devices (CIEDs) are used to treat a range of cardiovascular diseases and can lead to substantial clinical improvements. However, studies evaluating patients? experiences of living with these devices are sparse and have focused mainly on implantable cardioverter defibrillators. In addition, there has been limited evaluation of how people living with a CIED use social media to gain insight into their condition. Objective: This study aims to analyze posts from web-based communities called subreddits on the website Reddit, intended for people living with a CIED, to characterize the informational needs and experiences of patients. Methods: Reddit was systematically searched for appropriate subreddits, and we found 1 subreddit that could be included in the analysis. A Python-based web scraping script using the Reddit application programming interface was used to extract posts from this subreddit. Each post was individually screened for relevancy, and a register of participants? demographic information was created. Conventional qualitative content analysis was used to inductively classify the qualitative data collected into codes, subcategories, and overarching categories. Results: Of the 484 posts collected using the script, 186 were excluded, resulting in 298 posts from 196 participants being included in the analysis. The median age of the participants who reported this was 33 (IQR 22.0-39.5; range 17-72) years, and the majority had a permanent pacemaker. The content analysis yielded 5 overarching categories: use of the subreddit by participants, questions and experiences related to the daily challenges of living with a CIED, physical sequelae of CIED implantation, psychological experiences of living with a CIED, and questions and experiences related to health care while living with a CIED. These categories provided insight into the diverse experiences and informational needs of participants living with a CIED. The data predominantly represented the experiences of younger and more physically active participants. Conclusions: Social media provides a platform through which people living with a CIED can share information and provide support to their peers. Participants generally sought information about the experiences of others living with a CIED. This was often done to help overcome a range of challenges faced by participants, including the need to adapt to living with a CIED, difficulties with navigating health care, psychological difficulties, and various aversive physical sequelae. These challenges may be particularly difficult for younger and physically active people. Health care professionals may leverage peer support and other aid to help people overcome the challenges they face while living with a CIED. UR - https://cardio.jmir.org/2023/1/e46296 UR - http://dx.doi.org/10.2196/46296 UR - http://www.ncbi.nlm.nih.gov/pubmed/37766632 ID - info:doi/10.2196/46296 ER - TY - JOUR AU - Seth, Rajeev AU - Dhaliwal, K. Baldeep AU - Miller, Emily AU - Best, Tyler AU - Sullivan, Alexis AU - Thankachen, Betty AU - Qaiyum, Yawar AU - Shet, Anita PY - 2023/10/31 TI - Leveling the Research Playing Field: Decolonizing Global Health Research Through Web-Based Platforms JO - J Med Internet Res SP - e46897 VL - 25 KW - decolonization KW - vaccination KW - community KW - community engagement KW - health equity KW - health research KW - online KW - online platform KW - web-based platform KW - systemic barrier KW - diversity KW - marginalized KW - promote KW - equity KW - research UR - https://www.jmir.org/2023/1/e46897 UR - http://dx.doi.org/10.2196/46897 UR - http://www.ncbi.nlm.nih.gov/pubmed/37906225 ID - info:doi/10.2196/46897 ER - TY - JOUR AU - Hui, Vivian AU - Eby, Malavika AU - Constantino, Eva Rose AU - Lee, Heeyoung AU - Zelazny, Jamie AU - Chang, C. Judy AU - He, Daqing AU - Lee, Ji Young PY - 2023/10/9 TI - Examining the Supports and Advice That Women With Intimate Partner Violence Experience Received in Online Health Communities: Text Mining Approach JO - J Med Internet Res SP - e48607 VL - 25 KW - intimate partner violence KW - text mining KW - social media KW - online health communities KW - linguistic features N2 - Background: Intimate partner violence (IPV) is an underreported public health crisis primarily affecting women associated with severe health conditions and can lead to a high rate of homicide. Owing to the COVID-19 pandemic, more women with IPV experiences visited online health communities (OHCs) to seek help because of anonymity. However, little is known regarding whether their help requests were answered and whether the information provided was delivered in an appropriate manner. To understand the help-seeking information sought and given in OHCs, extraction of postings and linguistic features could be helpful to develop automated models to improve future help-seeking experiences. Objective: The objective of this study was to examine the types and patterns (ie, communication styles) of the advice offered by OHC members and whether the information received from women matched their expressed needs in their initial postings. Methods: We examined data from Reddit using data from subreddit community r/domesticviolence posts from November 14, 2020, through November 14, 2021, during the COVID-19 pandemic. We included posts from women aged ?18 years who self-identified or described experiencing IPV and requested advice or help in this subreddit community. Posts from nonabused women and women aged <18 years, non-English posts, good news announcements, gratitude posts without any advice seeking, and posts related to advertisements were excluded. We developed a codebook and annotated the postings in an iterative manner. Initial posts were also quantified using Linguistic Inquiry and Word Count to categorize linguistic and posting features. Postings were then classified into 2 categories (ie, matched needs and unmatched needs) according to the types of help sought and received in OHCs to capture the help-seeking result. Nonparametric statistical analysis (ie, 2-tailed t test or Mann-Whitney U test) was used to compare the linguistic and posting features between matched and unmatched needs. Results: Overall, 250 postings were included, and 200 (80%) posting response comments matched with the type of help requested in initial postings, with legal advice and IPV knowledge achieving the highest matching rate. Overall, 17 linguistic or posting features were found to be significantly different between the 2 groups (ie, matched help and unmatched help). Positive title sentiment and linguistic features in postings containing health and wellness wordings were associated with unmatched needs postings, whereas the other 14 features were associated with postings with matched needs. Conclusions: OHCs can extract the linguistic and posting features to understand the help-seeking result among women with IPV experiences. Features identified in this corpus reflected the differences found between the 2 groups. This is the first study that leveraged Linguistic Inquiry and Word Count to shed light on generating predictive features from unstructured text in OHCs, which could guide future algorithm development to detect help-seeking results within OHCs effectively. UR - https://www.jmir.org/2023/1/e48607 UR - http://dx.doi.org/10.2196/48607 UR - http://www.ncbi.nlm.nih.gov/pubmed/37812467 ID - info:doi/10.2196/48607 ER - TY - JOUR AU - Frølunde, Sofie Anne AU - Gren, Thiesen Susanne AU - Frøstrup, Grete Anne AU - Poulsen, Bo Peter AU - Vastrup, Skov Anne AU - Vestergaard, Christian PY - 2023/10/5 TI - Outreach Through Facebook: Do Patients With Atopic Dermatitis Provide Clinically Relevant Information When Recruited for Surveys on Social Media? JO - JMIR Dermatol SP - e45226 VL - 6 KW - social media KW - atopic dermatitis KW - digital survey KW - recruit KW - patient perspectives KW - patient-reported outcomes KW - real-world data UR - https://derma.jmir.org/2023/1/e45226 UR - http://dx.doi.org/10.2196/45226 UR - http://www.ncbi.nlm.nih.gov/pubmed/37796547 ID - info:doi/10.2196/45226 ER - TY - JOUR AU - Hermsen, Sander AU - Van Abswoude, Femke AU - Steenbergen, Bert PY - 2023/10/5 TI - The Effect of Social Networks on Active Living in Adolescents: Qualitative Focus Group Study JO - JMIR Form Res SP - e46350 VL - 7 KW - active living KW - adolescents KW - physical activity KW - digital health KW - mobile phone N2 - Background: Participation in organized sports and other forms of active living have important health benefits in adolescence and adulthood. Unfortunately, the transition to secondary school has been shown to be a barrier to participation. Social networks can play important roles in activating adolescents, and information and communication technology (ICT) interventions can augment this role. To date, there are few insights into what adolescents themselves think and feel about barriers to and motivators for active living, the role of their social networks in active living, and the potential of ICT for physical activity (PA). Objective: This study aimed to gather insights into the perspectives of adolescents aged 12 to 14 years on active living and sports participation, motivators and demotivators for active living, and the potential roles of their social network and of ICT. Methods: A total of 26 adolescents aged 12 to 14 years from different levels of Dutch secondary schools participated in 1 of 5 semistructured focus group interviews, in which they talked about sports and PA, their social networks, their ICT use, and the role of social networks and ICT in PA. All interviews were transcribed and analyzed using a thematic qualitative approach. Results: The study showed that all participants were physically active, although the transition to secondary school made this difficult, mostly because of time constraints. Participants saw positive physical and mental health effects as important benefits of active living. They regarded social benefits as strong motivators for active living: being together, making friends, and having fun together. However, the social network could also demotivate through negative peer judgment and negative feedback. Participants were willing to share their own positive experiences and hear about those from close peers and friends but would not share their own (and were not interested in others?) negative experiences or personal information. Participants were mainly interested in descriptive norms set by others and obtained inspiration from others for PA. With respect to using ICT for active living, participants stated a preference for social challenges among friends, personalized feedback, goals, activities, and rewards. Competition was seen as less important or even unattractive. If mentioned, participants felt that this should be with friends, or peers of a similar level, with fun being more important than the competition itself. Conclusions: This study shows that adolescents feel that their social network is and can be a strong driver of active living. They are willing to use ICT-based solutions that make use of social networks for PA as long as these solutions involve their current (close) network and use an approach based on being together and having fun together. UR - https://formative.jmir.org/2023/1/e46350 UR - http://dx.doi.org/10.2196/46350 UR - http://www.ncbi.nlm.nih.gov/pubmed/37796582 ID - info:doi/10.2196/46350 ER - TY - JOUR AU - Svanholm, Frida AU - Turesson, Christina AU - Löfgren, Monika AU - Björk, Mathilda PY - 2023/9/28 TI - Acceptability of the eHealth Intervention Sustainable Worker Digital Support for Persons With Chronic Pain and Their Employers (SWEPPE): Questionnaire and Interview Study JO - JMIR Hum Factors SP - e46878 VL - 10 KW - chronic pain KW - digital support KW - eHealth KW - return to work KW - rehabilitation KW - support KW - quality of life KW - implementation KW - acceptability KW - interview KW - questionnaire KW - qualitative KW - barrier KW - users KW - mobile phone N2 - Background: Sick leave and decreased ability to work are the consequences of chronic pain. Interdisciplinary pain rehabilitation programs (IPRPs) aim to improve health-related quality of life and participation in work activities, although implementing rehabilitation strategies at work after IPRPs can be difficult. Employers? knowledge about pain and the role of rehabilitation needs to be strengthened. The self-management of chronic pain can be improved through eHealth interventions. However, these interventions do not involve communicating with employers to improve work participation. To address this deficiency, a new eHealth intervention, Sustainable Worker Digital Support for Persons with Chronic Pain and Their Employers (SWEPPE), was developed. Objective: This study aimed to describe the acceptability of SWEPPE after IPRPs from the perspective of patients with chronic pain and their employers. Methods: This study included 11 patients and 4 employers who were recruited to test SWEPPE in daily life for 3 months after IPRPs. Data were collected using individual interviews at the end of the 3-month test period and questionnaires, which were completed when SWEPPE was introduced (questionnaire 1) and at a 3-month follow-up (questionnaire 2). Data were also collected on how often SWEPPE was used. Qualitative data were analyzed through a qualitative content analysis using an abductive approach. The framework used for the deductive approach was the theoretical framework of acceptability. Quantitative data were analyzed through descriptive statistics and the differences between the responses to questionnaires 1 and questionnaire 2 using the Wilcoxon signed rank test. Results: Both patients and employers reported that SWEPPE increased their knowledge and understanding of how to improve work participation and helped them identify goals, barriers, and strategies for return to work. In addition, participants noted that SWEPPE improved employer-employee communication and collaboration. However, experiences and ratings varied among participants and the different SWEPPE modules. The acceptability of SWEPPE was lower in patients who experienced significant pain and fatigue. A high degree of flexibility and choice of ratings in SWEPPE were generally described as helpful. Conclusions: This study shows promising results on the user acceptability of SWEPPE from both patient and employer perspectives. However, the variations among patients and modules indicate a need for further testing and research to refine the content and identify the group of patients who will best benefit from SWEPPE. UR - https://humanfactors.jmir.org/2023/1/e46878 UR - http://dx.doi.org/10.2196/46878 UR - http://www.ncbi.nlm.nih.gov/pubmed/37768708 ID - info:doi/10.2196/46878 ER - TY - JOUR AU - Li, Ziyu AU - Wu, Xiaoqian AU - Xu, Lin AU - Liu, Ming AU - Huang, Cheng PY - 2023/9/21 TI - Hot Topic Recognition of Health Rumors Based on Anti-Rumor Articles on the WeChat Official Account Platform: Topic Modeling JO - J Med Internet Res SP - e45019 VL - 25 KW - topic model KW - health rumors KW - social media KW - WeChat official account KW - content analysis KW - public health KW - machine learning KW - Twitter KW - social network KW - misinformation KW - users KW - disease KW - diet N2 - Background: Social networks have become one of the main channels for obtaining health information. However, they have also become a source of health-related misinformation, which seriously threatens the public?s physical and mental health. Governance of health-related misinformation can be implemented through topic identification of rumors on social networks. However, little attention has been paid to studying the types and routes of dissemination of health rumors on the internet, especially rumors regarding health-related information in Chinese social media. Objective: This study aims to explore the types of health-related misinformation favored by WeChat public platform users and their prevalence trends and to analyze the modeling results of the text by using the Latent Dirichlet Allocation model. Methods: We used a web crawler tool to capture health rumor?dispelling articles on WeChat rumor-dispelling public accounts. We collected information from health-debunking articles posted between January 1, 2016, and August 31, 2022. Following word segmentation of the collected text, a document topic generation model called Latent Dirichlet Allocation was used to identify and generalize the most common topics. The proportion distribution of the themes was calculated, and the negative impact of various health rumors in different periods was analyzed. Additionally, the prevalence of health rumors was analyzed by the number of health rumors generated at each time point. Results: We collected 9366 rumor-refuting articles from January 1, 2016, to August 31, 2022, from WeChat official accounts. Through topic modeling, we divided the health rumors into 8 topics, that is, rumors on prevention and treatment of infectious diseases (1284/9366, 13.71%), disease therapy and its effects (1037/9366, 11.07%), food safety (1243/9366, 13.27%), cancer and its causes (946/9366, 10.10%), regimen and disease (1540/9366, 16.44%), transmission (914/9366, 9.76%), healthy diet (1068/9366, 11.40%), and nutrition and health (1334/9366, 14.24%). Furthermore, we summarized the 8 topics under 4 themes, that is, public health, disease, diet and health, and spread of rumors. Conclusions: Our study shows that topic modeling can provide analysis and insights into health rumor governance. The rumor development trends showed that most rumors were on public health, disease, and diet and health problems. Governments still need to implement relevant and comprehensive rumor management strategies based on the rumors prevalent in their countries and formulate appropriate policies. Apart from regulating the content disseminated on social media platforms, the national quality of health education should also be improved. Governance of social networks should be clearly implemented, as these rapidly developed platforms come with privacy issues. Both disseminators and receivers of information should ensure a realistic attitude and disseminate health information correctly. In addition, we recommend that sentiment analysis?related studies be conducted to verify the impact of health rumor?related topics. UR - https://www.jmir.org/2023/1/e45019 UR - http://dx.doi.org/10.2196/45019 UR - http://www.ncbi.nlm.nih.gov/pubmed/37733396 ID - info:doi/10.2196/45019 ER - TY - JOUR AU - Miao, Melissa AU - Morrow, Rosemary AU - Salomon, Alexander AU - Mcculloch, Ben AU - Evain, Jean-Christophe AU - Wright, Rebecca Meg AU - Murphy, Therese Marie AU - Welsh, Monica AU - Williams, Liz AU - Power, Emma AU - Rietdijk, Rachael AU - Debono, Deborah AU - Brunner, Melissa AU - Togher, Leanne PY - 2023/9/19 TI - Digital Health Implementation Strategies Coproduced With Adults With Acquired Brain Injury, Their Close Others, and Clinicians: Mixed Methods Study With Collaborative Autoethnography and Network Analysis JO - J Med Internet Res SP - e46396 VL - 25 KW - complexity KW - implementation science KW - internet interventions KW - brain injury KW - stroke KW - traumatic brain injury KW - delivery of health care KW - caregivers KW - digital health KW - psychosocial interventions KW - psychosocial KW - mobile phone N2 - Background: Acquired brain injuries (ABIs), such as stroke and traumatic brain injury, commonly cause cognitive-communication disorders, in which underlying cognitive difficulties also impair communication. As communication is an exchange with others, close others such as family and friends also experience the impact of cognitive-communication impairment. It is therefore an internationally recommended best practice for speech-language pathologists to provide communication support to both people with ABI and the people who communicate with them. Current research also identifies a need for neurorehabilitation professionals to support digital communication, such as social media use, after ABI. However, with >135 million people worldwide affected by ABI, alternate and supplementary service delivery models are needed to meet these communication needs. The ?Social Brain Toolkit? is a novel suite of 3 interventions to deliver communication rehabilitation via the internet. However, digital health implementation is complex, and minimal guidance exists for ABI. Objective: This study aimed to support the implementation of the Social Brain Toolkit by coproducing implementation knowledge with people with ABI, people who communicate with people with ABI, clinicians, and leaders in digital health implementation. Methods: A maximum variation sample (N=35) of individuals with living experience of ABI, close others, clinicians, and digital health implementation leaders participated in an explanatory sequential mixed methods design. Stakeholders quantitatively prioritized 4 of the 7 theoretical domains of the Nonadoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework as being the most important for Social Brain Toolkit implementation. Qualitative interview and focus group data collection focused on these 4 domains. Data were deductively analyzed against the NASSS framework with stakeholder coauthors to determine implementation considerations and strategies. A collaborative autoethnography of the research was conducted. Interrelationships between considerations and strategies were identified through a post hoc network analysis. Results: Across the 4 prioritized domains of ?condition,? ?technology,? ?value proposition,? and ?adopters,? 48 digital health implementation considerations and 52 tailored developer and clinician implementation strategies were generated. Benefits and challenges of coproduction were identified. The post hoc network analysis revealed 172 unique relationships between the identified implementation considerations and strategies, with user and persona testing and responsive design identified as the potentially most impactful strategies. Conclusions: People with ABI, close others, clinicians, and digital health leaders coproduced new knowledge of digital health implementation considerations for adults with ABI and the people who communicate with them, as well as tailored implementation strategies. Complexity-informed network analyses offered a data-driven method to identify the 2 most potentially impactful strategies. Although the study was limited by a focus on 4 NASSS domains and the underrepresentation of certain demographics, the wealth of actionable implementation knowledge produced supports future coproduction of implementation research with mutually beneficial outcomes for stakeholders and researchers. International Registered Report Identifier (IRRID): RR2-10.2196/35080 UR - https://www.jmir.org/2023/1/e46396 UR - http://dx.doi.org/10.2196/46396 UR - http://www.ncbi.nlm.nih.gov/pubmed/37725413 ID - info:doi/10.2196/46396 ER - TY - JOUR AU - Bizzotto, Nicole AU - Schulz, Johannes Peter AU - de Bruijn, Gert-Jan PY - 2023/9/18 TI - The ?Loci? of Misinformation and Its Correction in Peer- and Expert-Led Online Communities for Mental Health: Content Analysis JO - J Med Internet Res SP - e44656 VL - 25 KW - online communities KW - social media KW - mental health KW - misinformation KW - empowerment KW - content analysis KW - online community KW - infodemiology KW - information seeking KW - help seeking KW - information behavior KW - online search KW - search query KW - information quality KW - information accuracy N2 - Background: Mental health problems are recognized as a pressing public health issue, and an increasing number of individuals are turning to online communities for mental health to search for information and support. Although these virtual platforms have the potential to provide emotional support and access to anecdotal experiences, they can also present users with large amounts of potentially inaccurate information. Despite the importance of this issue, limited research has been conducted, especially on the differences that might emerge due to the type of content moderation of online communities: peer-led or expert-led. Objective: We aim to fill this gap by examining the prevalence, the communicative context, and the persistence of mental health misinformation on Facebook online communities for mental health, with a focus on understanding the mechanisms that enable effective correction of inaccurate information and differences between expert-led and peer-led groups. Methods: We conducted a content analysis of 1534 statements (from 144 threads) in 2 Italian-speaking Facebook groups. Results: The study found that an alarming number of comments (26.1%) contained medically inaccurate information. Furthermore, nearly 60% of the threads presented at least one misinformation statement without any correction attempt. Moderators were more likely to correct misinformation than members; however, they were not immune to posting content containing misinformation, which was an unexpected finding. Discussions about aspects of treatment (including side effects or treatment interruption) significantly increased the probability of encountering misinformation. Additionally, the study found that misinformation produced in the comments of a thread, rather than as the first post, had a lower probability of being corrected, particularly in peer-led communities. Conclusions: The high prevalence of misinformation in online communities, particularly when left uncorrected, underscores the importance of conducting additional research to identify effective mechanisms to prevent its spread. This is especially important given the study?s finding that misinformation tends to be more prevalent around specific ?loci? of discussion that, once identified, can serve as a starting point to develop strategies for preventing and correcting misinformation within them. UR - https://www.jmir.org/2023/1/e44656 UR - http://dx.doi.org/10.2196/44656 UR - http://www.ncbi.nlm.nih.gov/pubmed/37721800 ID - info:doi/10.2196/44656 ER - TY - JOUR AU - Ashtari, Sadaf AU - Taylor, Adam PY - 2023/9/14 TI - Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community JO - JMIR Form Res SP - e41610 VL - 7 KW - application development KW - chronic pain KW - database KW - EDS KW - Ehlers-Danlos syndrome KW - genetic disorders KW - health care provider KW - information technology KW - online peer support group KW - privacy and security N2 - Background: Previous studies have shown positive tangible health benefits from using online support communities for informational support, daily living support, and emotional support. The specifics of how these communities can be improved have not been studied in detail. Objective: This study will investigate various sources of information that patients with genetic disorders use to learn more about their condition. We will be using patients with Ehlers-Danlos Syndrome (EDS) as a typical representation of the wider group of patients with genetic disorders. This study will also investigate the benefits and disadvantages of web-based platforms and how they can be improved. Methods: We used quantitative and qualitative analyses in this study. We undertook a web-based questionnaire survey and semistructured qualitative interviews through Zoom. Questionnaire results were analyzed using descriptive analysis. Thematic coding with constant comparison was used for interview transcript analysis. Results: A total of 436 respondents completed some or all of the survey. The majority of participants are female (386/413, 93.46%), and 24% (99/413) of them are in the age range of 25-34 years. Around 81% (336/413) of the participants have some type of college degree, and 55% (227/413) of them have graduate degrees. About 49.31% (204/413) of them are not currently employed. Most patients stated that their health care providers did not give accurate and complete information to them regarding their health situation (mean 2.87, SD 1.34). Also, patients perceived their providers as not knowledgeable regarding web-based communities that discuss patients? conditions (mean 1.93, SD 1.15). Patients are confident in using health care resources available in web-based health communities (mean 3.78, SD 1.13). We interviewed 30 participants. The demographics of the interviewees were aligned with those of the survey participants. A total of 9 different themes were identified based on the Qualtrics survey and qualitative interviews. Participants shared the pros and cons of different online support groups that they were using and gave suggestions for improvement. They requested a centralized database with different categories of resources classified based on different diseases. They also emphasized the importance of search features and the ability to find relevant information with a hashtag. Furthermore, they elaborated on the privacy and security concerns they have regarding web-based support group platforms. Conclusions: Patients with rare diseases are finding information not available from their health care providers in community support groups. The medical community and web developers have a great opportunity to help these people by engaging with their web-based communities. UR - https://formative.jmir.org/2023/1/e41610 UR - http://dx.doi.org/10.2196/41610 UR - http://www.ncbi.nlm.nih.gov/pubmed/37707878 ID - info:doi/10.2196/41610 ER - TY - JOUR AU - Malhotra, Kashish AU - Kempegowda, Punith PY - 2023/9/11 TI - Appraising Unmet Needs and Misinformation Spread About Polycystic Ovary Syndrome in 85,872 YouTube Comments Over 12 Years: Big Data Infodemiology Study JO - J Med Internet Res SP - e49220 VL - 25 KW - polycystic ovary syndrome KW - PCOS KW - public KW - YouTube KW - global health KW - online trends KW - global equity KW - infodemiology KW - big data KW - comments KW - sentiment KW - network analysis KW - contextualization KW - word association KW - misinformation KW - endocrinopathy KW - women KW - gender KW - users KW - treatment KW - fatigue KW - pain KW - motherhood N2 - Background: Polycystic ovary syndrome (PCOS) is the most common endocrinopathy in women, resulting in substantial burden related to metabolic, reproductive, and psychological complications. While attempts have been made to understand the themes and sentiments of the public regarding PCOS at the local and regional levels, no study has explored worldwide views, mainly due to financial and logistical limitations. YouTube is one of the largest sources of health-related information, where many visitors share their views as questions or comments. These can be used as a surrogate to understand the public?s perceptions. Objective: We analyzed the comments of all videos related to PCOS published on YouTube from May 2011 to April 2023 and identified trends over time in the comments, their context, associated themes, gender-based differences, and underlying sentiments. Methods: After extracting all the comments using the YouTube application programming interface, we contextually studied the keywords and analyzed gender differences using the Benjamini-Hochberg procedure. We applied a multidimensional approach to analyzing the content via association mining using Mozdeh. We performed network analysis to study associated themes using the Fruchterman-Reingold algorithm and then manually screened the comments for content analysis. The sentiments associated with YouTube comments were analyzed using SentiStrength. Results: A total of 85,872 comments from 940 PCOS videos on YouTube were extracted. We identified a specific gender for 13,106 comments. Of these, 1506 were matched to male users (11.5%), and 11,601 comments to female users (88.5%). Keywords including diagnosing PCOS, symptoms of PCOS, pills for PCOS (medication), and pregnancy were significantly associated with female users. Keywords such as herbal treatment, natural treatment, curing PCOS, and online searches were significantly associated with male users. The key themes associated with female users were symptoms of PCOS, positive personal experiences (themes such as helpful and love), negative personal experiences (fatigue and pain), motherhood (infertility and trying to conceive), self-diagnosis, and use of professional terminology detailing their journey. The key themes associated with male users were misinformation regarding the ?cure? for PCOS, using natural and herbal remedies to cure PCOS, fake testimonies from spammers selling their courses and consultations, finding treatment for PCOS, and sharing perspectives of female family members. The overall average positive sentiment was 1.6651 (95% CI 1.6593-1.6709), and the average negative sentiment was 1.4742 (95% CI 1.4683-1.4802) with a net positive difference of 0.1909. Conclusions: There may be a disparity in views on PCOS between women and men, with the latter associated with non?evidence-based approaches and misinformation. The improving sentiment noticed with YouTube comments may reflect better health care services. Prioritizing and promoting evidence-based care and disseminating pragmatic online coverage is warranted to improve public sentiment and limit misinformation spread. UR - https://www.jmir.org/2023/1/e49220 UR - http://dx.doi.org/10.2196/49220 UR - http://www.ncbi.nlm.nih.gov/pubmed/37695666 ID - info:doi/10.2196/49220 ER - TY - JOUR AU - Kalinowski, Jolaade AU - Idiong, Christie AU - Blackman-Carr, Loneke AU - Cooksey Stowers, Kristen AU - Davis, Shardé AU - Pan, Cindy AU - Chhabra, Alisha AU - Eaton, Lisa AU - Gans, M. Kim AU - Alexander, Ell Jay AU - Pagoto, Sherry PY - 2023/9/7 TI - Leveraging the Black Girls Run Web-Based Community as a Supportive Community for Physical Activity Engagement: Mixed Methods Study JO - JMIR Form Res SP - e43825 VL - 7 KW - physical activity KW - social media KW - women?s health KW - African American women KW - mHealth KW - mobile health KW - Facebook KW - African American KW - exercise KW - web-based community KW - web-based communities KW - content analysis N2 - Background: About 59%-73% of Black women do not meet the recommended targets for physical activity (PA). PA is a key modifiable lifestyle factor that can help mitigate risk for chronic diseases such as obesity, diabetes, and hypertension that disproportionately affect Black women. Web-based communities focused on PA have been emerging in recent years as web-based gathering spaces to provide support for PA in specific populations. One example is Black Girls Run (BGR), which is devoted to promoting PA in Black women. Objective: The purpose of this study was to describe the content shared on the BGR public Facebook page to provide insight into how web-based communities engage Black women in PA and inform the development of web-based PA interventions for Black women. Methods: Using Facebook Crowdtangle, we collected posts (n=397) and associated engagement data from the BGR public Facebook page for the 6-month period between June 1, 2021, and December 31, 2021. We pooled data in Dedoose to analyze the qualitative data and conducted a content analysis of qualitative data. We quantified types of posts, post engagement, and compared post types on engagement: ?like,? ?love,? ?haha,? ?wow,? ?care,? ?sad,? ?angry,? ?comments,? and ?shares.? Results: The content analysis revealed 8 categories of posts: shout-outs to members for achievements (n=122, 31%), goals or motivational (n=65, 16%), announcements (n=63, 16%), sponsored or ads (n=54, 14%), health related (n=47, 11%), the lived Black experience (n=23, 6%), self-care (n=15, 4%), and holidays or greetings (n=8, 2%). The 397 posts attracted a total of 55,354 engagements (reactions, comments, and shares). Associations between the number of engagement and post categories were analyzed using generalized linear models. Shout-out posts (n=22,268) elicited the highest average of total user engagement of 181.7 (SD 116.7), followed by goals or motivational posts (n=11,490) with an average total engagement of 160.1 (SD 125.2) and announcements (n=7962) having an average total engagement of 129.9 (SD 170.7). Significant statistical differences were found among the total engagement of posts (?72=80.99, P<.001), ?like? (?72=119.37, P<.001), ?love? (?72=63.995, P<.001), ?wow? (?72=23.73, P<.001), ?care? (?72=35.06, P<.001), ?comments? (?72=80.55, P<.001), and ?shares? (?72=71.28, P<.001). Conclusions: The majority of content on the BGR Facebook page (n=250, 63%) was focused on celebrating member achievements, motivating members to get active, and announcing and promoting active events. These types of posts attracted 75% of total post engagement. BGR appears to be a rich web-based community that offers social support for PA as well as culturally relevant health and social justice content. Web-based communities may be uniquely positioned to engage minoritized populations in health behavior. Further research should explore how and if web-based communities such as BGR can be interwoven into health interventions and health promotion. UR - https://formative.jmir.org/2023/1/e43825 UR - http://dx.doi.org/10.2196/43825 UR - http://www.ncbi.nlm.nih.gov/pubmed/37676722 ID - info:doi/10.2196/43825 ER - TY - JOUR AU - Alhaboby, A. Zhraa AU - Evans, Hala AU - Barnes, James AU - Short, Emma PY - 2023/8/25 TI - The Impact of Cybervictimization on the Self-Management of Chronic Conditions: Lived Experiences JO - J Med Internet Res SP - e40227 VL - 25 KW - chronic diseases KW - biographical disruption KW - long-term conditions KW - self-management KW - cybervictimization KW - cyber abuse KW - cyberbullying KW - cyber harassment KW - disability discrimination KW - discrimination KW - awareness N2 - Background: Cybervictimization of people with long-term conditions is a disturbing phenomenon with a documented impact on health and well-being. These experiences are primarily examined using quantitative methods, focusing on children and young people. However, research centered on the cybervictimization of adults with chronic conditions is scarce, with limited qualitative input from the victims as experts in their own experiences. Objective: This study aims to understand the impact of cybervictimization on the self-management of long-term conditions among adults with chronic conditions and disabilities in the United Kingdom. Methods: This paper reports the findings from the qualitative phase of a phenomenologically informed mixed methods study. The biographical disruption concept was used to conceptualize the study. In-depth semistructured interviews were conducted with 13 participants with chronic conditions who experienced cybervictimization. A codebook was developed, and a zigzag approach to thematic analysis was used to define and refine themes. Ethical considerations and risk assessment were ongoing during the research process because of the sensitivity of the topic and cases of harassment. Results: Cybervictimization has direct and indirect impacts on the self-management of chronic conditions. This impact was verified across 6 overarching themes that emerged from this study. First, biomedical events included overall health deterioration because of existing conditions, new diagnoses, and subjective physical complaints. Second, the impact on mental health was perceived through psychological consequences and psychiatric disorders that developed after or during this traumatic experience. Third, the multilevel impact theme focused on disrupting the strategies for coping with health conditions and involved unplanned changes to victims? health management priorities. Fourth, the impact of complexity reflected the perceived uniqueness in each case, intersectionality, struggle to obtain formal support, and subsequent health complications. Fifth, social network involvement comprised the effects of social isolation, victim blaming, and deception. Finally, the disability discrimination theme focused on prejudice, issues on inclusion, and hostility in society, with subsequent effects on well-being. Conclusions: People with long-term conditions experienced different forms of cybervictimization, all disruptive with various effects on health. Disability discrimination was a prominent finding to be further investigated. This paper reports the impact as themes to guide further research and practice, with the recognition that long-term conditions and impairments are not a homogeneous group. Despite the devastating consequences, there are positive points that strengthen potential interventions. Awareness-raising campaigns, training of support channels, and multidisciplinary research are recommended to tackle this issue and initiate change. UR - https://www.jmir.org/2023/1/e40227 UR - http://dx.doi.org/10.2196/40227 UR - http://www.ncbi.nlm.nih.gov/pubmed/37624637 ID - info:doi/10.2196/40227 ER - TY - JOUR AU - Jones, M. Christopher AU - Diethei, Daniel AU - Schöning, Johannes AU - Shrestha, Rehana AU - Jahnel, Tina AU - Schüz, Benjamin PY - 2023/8/24 TI - Impact of Social Reference Cues on Misinformation Sharing on Social Media: Series of Experimental Studies JO - J Med Internet Res SP - e45583 VL - 25 KW - misinformation KW - social media KW - health literacy KW - COVID-19 KW - fake news KW - Twitter KW - tweet KW - infodemiology KW - information behavior KW - information sharing KW - sharing behavior KW - behavior change KW - social cue KW - social reference KW - flag N2 - Background: Health-related misinformation on social media is a key challenge to effective and timely public health responses. Existing mitigation measures include flagging misinformation or providing links to correct information, but they have not yet targeted social processes. Current approaches focus on increasing scrutiny, providing corrections to misinformation (debunking), or alerting users prospectively about future misinformation (prebunking and inoculation). Here, we provide a test of a complementary strategy that focuses on the social processes inherent in social media use, in particular, social reinforcement, social identity, and injunctive norms. Objective: This study aimed to examine whether providing balanced social reference cues (ie, cues that provide information on users sharing and, more importantly, not sharing specific content) in addition to flagging COVID-19?related misinformation leads to reductions in sharing behavior and improvement in overall sharing quality. Methods: A total of 3 field experiments were conducted on Twitter?s native social media feed (via a newly developed browser extension). Participants? feed was augmented to include misleading and control information, resulting in 4 groups: no-information control, Twitter?s own misinformation warning (misinformation flag), social cue only, and combined misinformation flag and social cue. We tracked the content shared or liked by participants. Participants were provided with social information by referencing either their personal network on Twitter or all Twitter users. Results: A total of 1424 Twitter users participated in 3 studies (n=824, n=322, and n=278). Across all 3 studies, we found that social cues that reference users? personal network combined with a misinformation flag reduced the sharing of misleading but not control information and improved overall sharing quality. We show that this improvement could be driven by a change in injunctive social norms (study 2) but not social identity (study 3). Conclusions: Social reference cues combined with misinformation flags can significantly and meaningfully reduce the amount of COVID-19?related misinformation shared and improve overall sharing quality. They are a feasible and scalable way to effectively curb the sharing of COVID-19?related misinformation on social media. UR - https://www.jmir.org/2023/1/e45583 UR - http://dx.doi.org/10.2196/45583 UR - http://www.ncbi.nlm.nih.gov/pubmed/37616030 ID - info:doi/10.2196/45583 ER - TY - JOUR AU - Yang, Fan Ellie AU - Kornfield, Rachel AU - Liu, Yan AU - Chih, Ming-Yuan AU - Sarma, Prathusha AU - Gustafson, David AU - Curtin, John AU - Shah, Dhavan PY - 2023/8/22 TI - Using Machine Learning of Online Expression to Explain Recovery Trajectories: Content Analytic Approach to Studying a Substance Use Disorder Forum JO - J Med Internet Res SP - e45589 VL - 25 KW - supervised machine learning KW - online peer support forum KW - expression effects KW - content analysis KW - substance use disorder KW - mobile phone N2 - Background: Smartphone-based apps are increasingly used to prevent relapse among those with substance use disorders (SUDs). These systems collect a wealth of data from participants, including the content of messages exchanged in peer-to-peer support forums. How individuals self-disclose and exchange social support in these forums may provide insight into their recovery course, but a manual review of a large corpus of text by human coders is inefficient. Objective: The study sought to evaluate the feasibility of applying supervised machine learning (ML) to perform large-scale content analysis of an online peer-to-peer discussion forum. Machine-coded data were also used to understand how communication styles relate to writers? substance use and well-being outcomes. Methods: Data were collected from a smartphone app that connects patients with SUDs to online peer support via a discussion forum. Overall, 268 adult patients with SUD diagnoses were recruited from 3 federally qualified health centers in the United States beginning in 2014. Two waves of survey data were collected to measure demographic characteristics and study outcomes: at baseline (before accessing the app) and after 6 months of using the app. Messages were downloaded from the peer-to-peer forum and subjected to manual content analysis. These data were used to train supervised ML algorithms using features extracted from the Linguistic Inquiry and Word Count (LIWC) system to automatically identify the types of expression relevant to peer-to-peer support. Regression analyses examined how each expression type was associated with recovery outcomes. Results: Our manual content analysis identified 7 expression types relevant to the recovery process (emotional support, informational support, negative affect, change talk, insightful disclosure, gratitude, and universality disclosure). Over 6 months of app use, 86.2% (231/268) of participants posted on the app?s support forum. Of these participants, 93.5% (216/231) posted at least 1 message in the content categories of interest, generating 10,503 messages. Supervised ML algorithms were trained on the hand-coded data, achieving F1-scores ranging from 0.57 to 0.85. Regression analyses revealed that a greater proportion of the messages giving emotional support to peers was related to reduced substance use. For self-disclosure, a greater proportion of the messages expressing universality was related to improved quality of life, whereas a greater proportion of the negative affect expressions was negatively related to quality of life and mood. Conclusions: This study highlights a method of natural language processing with potential to provide real-time insights into peer-to-peer communication dynamics. First, we found that our ML approach allowed for large-scale content coding while retaining moderate-to-high levels of accuracy. Second, individuals? expression styles were associated with recovery outcomes. The expression types of emotional support, universality disclosure, and negative affect were significantly related to recovery outcomes, and attending to these dynamics may be important for appropriate intervention. UR - https://www.jmir.org/2023/1/e45589 UR - http://dx.doi.org/10.2196/45589 UR - http://www.ncbi.nlm.nih.gov/pubmed/37606984 ID - info:doi/10.2196/45589 ER - TY - JOUR AU - Goel, Rahul AU - Modhukur, Vijayachitra AU - Täär, Katrin AU - Salumets, Andres AU - Sharma, Rajesh AU - Peters, Maire PY - 2023/8/15 TI - Users? Concerns About Endometriosis on Social Media: Sentiment Analysis and Topic Modeling Study JO - J Med Internet Res SP - e45381 VL - 25 KW - endometriosis KW - latent Dirichlet allocation KW - pain KW - Reddit KW - sentiment analysis KW - social media KW - surgery KW - topic modeling KW - user engagement N2 - Background: Endometriosis is a debilitating and difficult-to-diagnose gynecological disease. Owing to limited information and awareness, women often rely on social media platforms as a support system to engage in discussions regarding their disease-related concerns. Objective: This study aimed to apply computational techniques to social media posts to identify discussion topics about endometriosis and to identify themes that require more attention from health care professionals and researchers. We also aimed to explore whether, amid the challenging nature of the disease, there are themes within the endometriosis community that gather posts with positive sentiments. Methods: We retrospectively extracted posts from the subreddits r/Endo and r/endometriosis from January 2011 to April 2022. We analyzed 45,693 Reddit posts using sentiment analysis and topic modeling?based methods in machine learning. Results: Since 2011, the number of posts and comments has increased steadily. The posts were categorized into 11 categories, and the highest number of posts were related to either asking for information (Question); sharing the experiences (Rant/Vent); or diagnosing and treating endometriosis, especially surgery (Surgery related). Sentiment analysis revealed that 92.09% (42,077/45,693) of posts were associated with negative sentiments, only 2.3% (1053/45,693) expressed positive feelings, and there were no categories with more positive than negative posts. Topic modeling revealed 27 major topics, and the most popular topics were Surgery, Questions/Advice, Diagnosis, and Pain. The Survey/Research topic, which brought together most research-related posts, was the last in terms of posts. Conclusions: Our study shows that posts on social media platforms can provide insights into the concerns of women with endometriosis symptoms. The analysis of the posts confirmed that women with endometriosis have to face negative emotions and pain daily. The large number of posts related to asking questions shows that women do not receive sufficient information from physicians and need community support to cope with the disease. Health care professionals should pay more attention to the symptoms and diagnosis of endometriosis, discuss these topics with patients to reduce their dissatisfaction with doctors, and contribute more to the overall well-being of women with endometriosis. Researchers should also become more involved in social media and share new science-based knowledge regarding endometriosis. UR - https://www.jmir.org/2023/1/e45381 UR - http://dx.doi.org/10.2196/45381 UR - http://www.ncbi.nlm.nih.gov/pubmed/37581905 ID - info:doi/10.2196/45381 ER - TY - JOUR AU - Byrne, Catrin AU - Pfeffer, E. Paul AU - De Simoni, Anna PY - 2023/8/14 TI - Experiences of Diagnosis, Symptoms, and Use of Reliever Inhalers in Patients With Asthma and Concurrent Inducible Laryngeal Obstruction or Breathing Pattern Disorder: Qualitative Analysis of a UK Asthma Online Community JO - J Med Internet Res SP - e44453 VL - 25 KW - asthma KW - breathing pattern disorder KW - inducible laryngeal obstruction KW - BPD KW - ILO KW - short-acting beta-agonist KW - salbutamol KW - breathing disorder KW - breathing KW - chest tightness KW - community KW - symptoms KW - diagnosis N2 - Background: Breathing pattern disorders (BPDs) and inducible laryngeal obstruction (ILO) cause similar symptoms to asthma, including dyspnea and chest tightness, with an estimated prevalence of up to one-fifth of patients with asthma. Both conditions can be comorbid with asthma, and there is evidence that they are misdiagnosed and mistreated as asthma. Objective: This study aims to explore whether the symptoms of ILO and BPD were topics of discussion in a UK asthma online health community and patient experiences of diagnosis and treatment, in particular their use of reliever inhalers. Methods: A qualitative thematic analysis was performed with posts from an asthma community between 2018 and 2022. A list of key ILO or BPD symptoms was created from the literature. Posts were identified using the search terms ?blue inhaler? and ?breath? and included if describing key symptoms. Discussion threads of included posts were also analyzed. Results: The search retrieved a total of 1127 relevant posts: 1069 written by 302 users and 58 posted anonymously. All participants were adults, except 2 who were parents writing about their children. Sex and age were only available for 1.66% (5/302; 3 females and 2 males) and 9.93% (30/302) of participants (27 to 73 years old), respectively. The average number of posts written by each participant was 3.54 (range 1-63). Seven participants wrote >20 posts each. Participants experiencing undiagnosed ILO or BPD symptoms, whether or not comorbid with asthma, expressed frustration with the ?one-size-fits-all? approach to diagnosis, as many felt that their asthma diagnosis did not fully explain symptoms. Some suspected or were formally diagnosed with BPD or ILO, the latter reporting relief on receiving a diagnosis and appropriate management. Participants showed awareness of their inappropriate salbutamol use or overuse due to lack of effect on symptoms. BPD and ILO symptoms were frequently comorbid with asthma. The asthma online community was a valuable resource: engagement with peers not only brought comfort but also prompted action with some going back to their clinicians and reaching a diagnosis and appropriate management. Conclusions: Undiagnosed ILO and BPD symptoms and lack of effects of asthma treatment were topics of discussion in an asthma online community, caused distress and frustration in participants, and affected their relationship with health care professionals, showing that patients experiencing BPD and ILO have unmet needs. Clinicians? education on BPD and ILO diagnosis and management, as well as increased access to appropriate management options, such as respiratory physiotherapy and speech and language therapy, are warranted particularly in primary care. Qualitative evidence that engagement with the online community resulted in patients taking action going back to their clinicians and reaching a diagnosis of ILO and BPD prompts future research on online peer support from an established online health community as a self-management resource for patients. UR - https://www.jmir.org/2023/1/e44453 UR - http://dx.doi.org/10.2196/44453 UR - http://www.ncbi.nlm.nih.gov/pubmed/37578820 ID - info:doi/10.2196/44453 ER - TY - JOUR AU - McQuade, N. Casey AU - Simonson, G. Michael AU - Ehrenberger, A. Kristen AU - Kohli, Amar PY - 2023/8/9 TI - Developing a Web-Based Asynchronous Case Discussion Format on Social Media to Teach Clinical Reasoning: Mixed Methods Study JO - JMIR Med Educ SP - e45277 VL - 9 KW - case discussion KW - case report KW - clinical reasoning KW - clinical vignette KW - junior doctor KW - junior physician KW - medical education KW - medical student KW - morning report KW - report style KW - resident KW - social media KW - trainee KW - Twitter N2 - Background: Case-based learning conferences are valuable to trainees, but growing clinical demands hinder consistent attendance. Social media increasingly acts as a venue for trainees to supplement their education asynchronously. We designed and implemented a web-based asynchronous clinical case discussion series on the Twitter social media platform to fill this educational gap. Objective: The aim of this mixed methods study is to examine the nature of interactions among web-based case discussion participants and assess local attitudes regarding the educational intervention. Methods: Starting in February 2018, we posted clinical vignettes to a dedicated Twitter account with the prompt ?What else do you want to know?? to stimulate discussion. The authors replied in real time when case discussion participants requested additional details. Additional data about the case were posted at regular intervals to the discussion thread to advance the overall case discussion. Participants were asked to explain their reasoning and support their conclusions when appropriate. Web-based engagement was assessed using Twitter Analytics. Participants? posts were qualitatively analyzed for themes, with special attention to examples of using clinical reasoning skills. A codebook of types of participant posts and interactions was refined iteratively. Local engagement and attitudes at our institution were assessed by surveying internal medicine trainees (n=182) and faculty (n=165) after 6 months. Results: Over a 6-month period, 11 live case discussions were engaged with by users 1773 times. A total of 86 Twitter profiles spanning 22 US states and 6 countries contributed to discussions among participants and the authors. Participants from all training levels were present, ranging from students to faculty. Interactions among participants and the case moderators were most commonly driven by clinical reasoning, including hypothesis-driven information gathering, discussing the differential diagnosis, and data interpretation or organization. Of 71 respondents to the local survey, 29 (41%) reported having a Twitter account. Of the 29 respondents with Twitter accounts, 17 (59%) reported participating in the case discussions. Respondents agreed that case participation increased both their clinical reasoning skills (15/17, 88%) and clinical knowledge (13/17, 76%). Conclusions: A social media?based serialized case discussion was a feasible asynchronous teaching method for engaging web-based learners of all levels in a clinical reasoning discussion. Further study should examine what factors drive trainee participation in web-based case discussions and under what circumstances asynchronous discussion might be preferred over in-person teaching activities. UR - https://mededu.jmir.org/2023/1/e45277 UR - http://dx.doi.org/10.2196/45277 UR - http://www.ncbi.nlm.nih.gov/pubmed/37556191 ID - info:doi/10.2196/45277 ER - TY - JOUR AU - van Gastel, Daniëlle AU - Antheunis, L. Marjolijn AU - Tenfelde, Kim AU - van de Graaf, L. Daniëlle AU - Geerts, Marieke AU - Nieboer, E. Theodoor AU - Bongers, Y. Marlies PY - 2023/8/3 TI - Social Support Among Women With Potential Essure-Related Complaints: Analysis of Facebook Group Content JO - JMIR Form Res SP - e32592 VL - 7 KW - Essure KW - social support KW - Facebook KW - sterilization KW - patient online communities KW - social media KW - social networks N2 - Background: Social support groups are an important resource for people to cope with problems. Previous studies have reported the different types of support in these groups, but little is known about the type of reactions that sharing of personal experiences induce among members. It is important to know how and to what extent members of support groups influence each other regarding the consumption of medical care. We researched this in a web-based Facebook group of women sterilized with Essure. Essure was a device intended for permanent contraception. From 2015 onward, women treated with Essure for tubal occlusion raised safety concerns and numerous complaints. Objective: This study aimed to evaluate the use of social support in a Facebook community named ?Essure problemen Nederland? (EPN; in English, ?Essure problems in the Netherlands?). Methods: All posts in the closed Facebook group EPN between March 8 and May 8, 2018, were included. In total, 3491 Facebook posts were analyzed using a modified version of the Social Support Behavior Codes framework created by Cutrona and Suhr in 1992. Posts were abstracted and aggregated into a database. Two investigators evaluated the posts, developed a modified version of the Social Support Behavior Codes framework, and applied the codes to the collected data. Results: We found that 92% of messages contained a form of social support. In 68.8% of posts, social support was provided, and in 31.2% of posts, social support was received. Informational and emotional support was the most frequently used form of provided social support (40.6% and 55.5%, respectively). The same distribution was seen with received social support: informational support in 81.5% and emotional support in 17.4% of cases. Our analysis showed a strong correlation between providing or receiving social support and the main form of social support (P<.001). In a total of only 74 (2.2%) cases, women advised each other to seek medical care. Conclusions: The main purpose of women in the EPN Facebook group was to provide and receive informational or emotional support or both. UR - https://formative.jmir.org/2023/1/e32592 UR - http://dx.doi.org/10.2196/32592 UR - http://www.ncbi.nlm.nih.gov/pubmed/37535412 ID - info:doi/10.2196/32592 ER - TY - JOUR AU - Lazard, J. Allison AU - Nicolla, Sydney AU - Vereen, N. Rhyan AU - Pendleton, Shanetta AU - Charlot, Marjory AU - Tan, Hung-Jui AU - DiFranzo, Dominic AU - Pulido, Marlyn AU - Dasgupta, Nabarun PY - 2023/7/28 TI - Exposure and Reactions to Cancer Treatment Misinformation and Advice: Survey Study JO - JMIR Cancer SP - e43749 VL - 9 KW - cancer KW - misinformation KW - social media KW - prosocial intervening KW - treatment KW - false information KW - alternative medicine KW - information spread KW - dissemination KW - infodemiology KW - mobile phone N2 - Background: Cancer treatment misinformation, or false claims about alternative cures, often spreads faster and farther than true information on social media. Cancer treatment misinformation can harm the psychosocial and physical health of individuals with cancer and their cancer care networks by causing distress and encouraging people to abandon support, potentially leading to deviations from evidence-based care. There is a pressing need to understand how cancer treatment misinformation is shared and uncover ways to reduce misinformation. Objective: We aimed to better understand exposure and reactions to cancer treatment misinformation, including the willingness of study participants to prosocially intervene and their intentions to share Instagram posts with cancer treatment misinformation. Methods: We conducted a survey on cancer treatment misinformation among US adults in December 2021. Participants reported their exposure and reactions to cancer treatment misinformation generally (saw or heard, source, type of advice, and curiosity) and specifically on social media (platform, believability). Participants were then randomly assigned to view 1 of 3 cancer treatment misinformation posts or an information post and asked to report their willingness to prosocially intervene and their intentions to share. Results: Among US adult participants (N=603; mean age 46, SD 18.83 years), including those with cancer and cancer caregivers, almost 1 in 4 (142/603, 23.5%) received advice about alternative ways to treat or cure cancer. Advice was primarily shared through family (39.4%) and friends (37.3%) for digestive (30.3%) and natural (14.1%) alternative cancer treatments, which generated curiosity among most recipients (106/142, 74.6%). More than half of participants (337/603, 55.9%) saw any cancer treatment misinformation on social media, with significantly higher exposure for those with cancer (53/109, 70.6%) than for those without cancer (89/494, 52.6%; P<.001). Participants saw cancer misinformation on Facebook (39.8%), YouTube (27%), Instagram (22.1%), and TikTok (14.1%), among other platforms. Participants (429/603, 71.1%) thought cancer treatment misinformation was true, at least sometimes, on social media. More than half (357/603, 59.2%) were likely to share any cancer misinformation posts shown. Many participants (412/603, 68.3%) were willing to prosocially intervene for any cancer misinformation posts, including flagging the cancer treatment misinformation posts as false (49.7%-51.4%) or reporting them to the platform (48.1%-51.4%). Among the participants, individuals with cancer and those who identified as Black or Hispanic reported greater willingness to intervene to reduce cancer misinformation but also higher intentions to share misinformation. Conclusions: Cancer treatment misinformation reaches US adults through social media, including on widely used platforms for support. Many believe that social media posts about alternative cancer treatment are true at least some of the time. The willingness of US adults, including those with cancer and members of susceptible populations, to prosocially intervene could initiate the necessary community action to reduce cancer treatment misinformation if coupled with strategies to help individuals discern false claims. UR - https://cancer.jmir.org/2023/1/e43749 UR - http://dx.doi.org/10.2196/43749 UR - http://www.ncbi.nlm.nih.gov/pubmed/37505790 ID - info:doi/10.2196/43749 ER - TY - JOUR AU - Delnoij, J. Diana M. AU - Derks, Meggie AU - Koolen, Laura AU - Shekary, Shuka AU - Suitela, Jozua PY - 2023/7/28 TI - Using Patient Blogs on Social Media to Assess the Content Validity of Patient-Reported Outcome Measures: Qualitative Analysis of Patient-Written Blogs JO - JMIR Form Res SP - e43210 VL - 7 KW - patient stories KW - patient-reported outcome measure KW - PROM KW - social media KW - narrative KW - patient story KW - storytelling KW - blogger KW - experiential KW - experience KW - content validity KW - content analysis KW - qualitative KW - cross sectional KW - cross-sectional KW - chronic disease KW - noncommunicable diseases KW - NCD KW - rheumatoid arthritis KW - Parkinson disease, diabetes mellitus KW - diabetes KW - type II diabetes KW - cancer KW - breast cancer KW - oncology KW - International Consortium for Health Outcome Measurement KW - ICHOM KW - data dictionary KW - Health Assessment Questionnaire KW - HAQ KW - Parkinson Disease Quality of Life Questionnaire KW - PDQ KW - inductive KW - inductive code N2 - Background: Patient-reported outcome measures (PROMs) are questionnaires that measure patient outcomes related to quality of life, health, and functioning, and are increasingly used to assess important outcomes from the patient?s perspective. For PROMs to contribute to better health and better care, it is vital that their content validity be adequate. This requires patient involvement in various steps of PROM development. PROM developers not only recognize the benefits of patient involvement but also report difficulties in recruiting patients and experience patient involvement as time-consuming, logistically challenging, and expensive. Objective: This study seeks to explore different strategies for disclosing the experiential knowledge of patients, namely through analyzing patient stories on the web and social media. The research questions are as follows: (1) how do bloggers living with a disease experience their health-related quality of life? (2) How are these experiences reflected in the domains and items of PROMs related to their disease? Methods: First, a qualitative analysis of blogs written by patients was performed. Second, subthemes and underlying codes resulting from this qualitative analysis were systematically compared with the domains and items in PROMs for the respective diseases that the bloggers write about. Blogs were identified via the Google search engine between December 2019 and May 2021. Results: Bloggers describe a wide range of experiences regarding their physical functioning and health; mental well-being; social network and support; daily life, education, work, and leisure; coping; and self-management. Bloggers also write about their positive and negative experiences with health care delivery, the organization of health care, and health care professionals. In general, patients? experiences as described in blogs were reflected in the domains and items of the PROMs related to their disease. However, except for diabetes mellitus, in all the sets of PROMs, potentially missing topics could be identified. Similarly, with the exception of Parkinson disease, all PROMs address issues that patients did not write about in their blogs and that might therefore be redundant. Conclusions: Web-based patient stories in the form of blogs reveal how people living with a certain disease experience their health-related quality of life. These stories enable analyses of patients? experiences that can be used to assess the content validity of PROMs. This can be a useful step for researchers who are looking for sets of measuring instruments that match their purposes. UR - https://formative.jmir.org/2023/1/e43210 UR - http://dx.doi.org/10.2196/43210 UR - http://www.ncbi.nlm.nih.gov/pubmed/37505797 ID - info:doi/10.2196/43210 ER - TY - JOUR AU - Xia, Xinming AU - Zhang, Yi AU - Jiang, Wenting AU - Wu, Yuhao Connor PY - 2023/7/24 TI - Staying Home, Tweeting Hope: Mixed Methods Study of Twitter Sentiment Geographical Index During US Stay-At-Home Orders JO - J Med Internet Res SP - e45757 VL - 25 KW - COVID-19 KW - Twitter KW - stay-at-home orders KW - dynamics of public opinion KW - multiperiod difference-in-differences model N2 - Background: Stay-at-home orders were one of the controversial interventions to curb the spread of COVID-19 in the United States. The stay-at-home orders, implemented in 51 states and territories between March 7 and June 30, 2020, impacted the lives of individuals and communities and accelerated the heavy usage of web-based social networking sites. Twitter sentiment analysis can provide valuable insight into public health emergency response measures and allow for better formulation and timing of future public health measures to be released in response to future public health emergencies. Objective: This study evaluated how stay-at-home orders affect Twitter sentiment in the United States. Furthermore, this study aimed to understand the feedback on stay-at-home orders from groups with different circumstances and backgrounds. In addition, we particularly focused on vulnerable groups, including older people groups with underlying medical conditions, small and medium enterprises, and low-income groups. Methods: We constructed a multiperiod difference-in-differences regression model based on the Twitter sentiment geographical index quantified from 7.4 billion geo-tagged tweets data to analyze the dynamics of sentiment feedback on stay-at-home orders across the United States. In addition, we used moderated effects analysis to assess differential feedback from vulnerable groups. Results: We combed through the implementation of stay-at-home orders, Twitter sentiment geographical index, and the number of confirmed cases and deaths in 51 US states and territories. We identified trend changes in public sentiment before and after the stay-at-home orders. Regression results showed that stay-at-home orders generated a positive response, contributing to a recovery in Twitter sentiment. However, vulnerable groups faced greater shocks and hardships during the COVID-19 pandemic. In addition, economic and demographic characteristics had a significant moderating effect. Conclusions: This study showed a clear positive shift in public opinion about COVID-19, with this positive impact occurring primarily after stay-at-home orders. However, this positive sentiment is time-limited, with 14 days later allowing people to be more influenced by the status quo and trends, so feedback on the stay-at-home orders is no longer positively significant. In particular, negative sentiment is more likely to be generated in states with a large proportion of vulnerable groups, and the policy plays a limited role. The pandemic hit older people, those with underlying diseases, and small and medium enterprises directly but hurt states with cross-cutting economic situations and more complex demographics over time. Based on large-scale Twitter data, this sociological perspective allows us to monitor the evolution of public opinion more directly, assess the impact of social events on public opinion, and understand the heterogeneity in the face of pandemic shocks. UR - https://www.jmir.org/2023/1/e45757 UR - http://dx.doi.org/10.2196/45757 UR - http://www.ncbi.nlm.nih.gov/pubmed/37486758 ID - info:doi/10.2196/45757 ER - TY - JOUR AU - Yang, Genevieve AU - King, G. Sarah AU - Lin, Hung-Mo AU - Goldstein, Z. Rita PY - 2023/7/19 TI - Emotional Expression on Social Media Support Forums for Substance Cessation: Observational Study of Text-Based Reddit Posts JO - J Med Internet Res SP - e45267 VL - 25 KW - sentiment analysis KW - text mining KW - addiction phenotype KW - subjective experience phenotype KW - naturalistic big data KW - natural language processing KW - phenomenology KW - experience sampling N2 - Background: Substance use disorder is characterized by distinct cognitive processes involved in emotion regulation as well as unique emotional experiences related to the relapsing cycle of drug use and recovery. Web-based communities and the posts they generate represent an unprecedented resource for studying subjective emotional experiences, capturing population types and sizes not typically available in the laboratory. Here, we mined text data from Reddit, a social media website that hosts discussions from pseudonymous users on specific topic forums, including forums for individuals who are trying to abstain from using drugs, to explore the putative specificity of the emotional experience of substance cessation. Objective: An important motivation for this study was to investigate transdiagnostic clues that could ultimately be used for mental health outreach. Specifically, we aimed to characterize the emotions associated with cessation of 3 major substances and compare them to emotional experiences reported in nonsubstance cessation posts, including on forums related to psychiatric conditions of high comorbidity with addiction. Methods: Raw text from 2 million posts made, respectively, in the fall of 2020 (discovery data set) and fall of 2019 (replication data set) were obtained from 394 forums hosted by Reddit through the application programming interface. We quantified emotion word frequencies in 3 substance cessation forums for alcohol, nicotine, and cannabis topic categories and performed comparisons with general forums. Emotion word frequencies were classified into distinct categories and represented as a multidimensional emotion vector for each forum. We further quantified the degree of emotional resemblance between different forums by computing cosine similarity on these vectorized representations. For substance cessation posts with self-reported time since last use, we explored changes in the use of emotion words as a function of abstinence duration. Results: Compared to posts from general forums, substance cessation posts showed more expressions of anxiety, disgust, pride, and gratitude words. ?Anxiety? emotion words were attenuated for abstinence durations >100 days compared to shorter durations (t12=3.08, 2-tailed; P=.001). The cosine similarity analysis identified an emotion profile preferentially expressed in the cessation posts across substances, with lesser but still prominent similarities to posts about social anxiety and attention-deficit/hyperactivity disorder. These results were replicated in the 2019 (pre?COVID-19) data and were distinct from control analyses using nonemotion words. Conclusions: We identified a unique subjective experience phenotype of emotions associated with the cessation of 3 major substances, replicable across 2 time periods, with changes as a function of abstinence duration. Although to a lesser extent, this phenotype also quantifiably resembled the emotion phenomenology of other relevant subjective experiences (social anxiety and attention-deficit/hyperactivity disorder). Taken together, these transdiagnostic results suggest a novel approach for the future identification of at-risk populations, allowing for the development and deployment of specific and timely interventions. UR - https://www.jmir.org/2023/1/e45267 UR - http://dx.doi.org/10.2196/45267 UR - http://www.ncbi.nlm.nih.gov/pubmed/37467010 ID - info:doi/10.2196/45267 ER - TY - JOUR AU - Booth, Alison AU - Manson, Stephanie AU - Halhol, Sonia AU - Merinopoulou, Evie AU - Raluy-Callado, Mireia AU - Hareendran, Asha AU - Knoll, Stefanie PY - 2023/7/12 TI - Using Health-Related Social Media to Understand the Experiences of Adults With Lung Cancer in the Era of Immuno-Oncology and Targeted Therapies: Observational Study JO - JMIR Cancer SP - e45707 VL - 9 KW - non-small cell lung cancer KW - data science KW - machine learning KW - natural language processing KW - social media data KW - patient experience KW - patient preference KW - immunotherapy KW - targeted therapies KW - lung cancer KW - social media N2 - Background: The treatment of non?small cell lung cancer (NSCLC) has evolved dramatically with the approval of immuno-oncology (IO) and targeted therapies (TTs). Insights on the patient experience with these therapies and their impacts are lacking. Health-related social media has been increasingly used by patients to share their disease and treatment experiences, thus representing a valuable source of real-world data to understand the patient?s voice and uncover potential unmet needs. Objective: This study aimed to describe the experiences of patients with NSCLC as reported in discussions posted on lung cancer?specific social media with respect to their disease symptoms and associated impacts. Methods: Publicly available posts (2010-2019) were extracted from selected lung cancer? or NSCLC-specific websites. Social media users (patients and caregivers posting on these websites) were stratified by metastatic- and adjuvant-eligible subgroups and treatment received using natural language processing (NLP) and machine learning methods. Automated identification of symptoms was conducted using NLP. Qualitative data analysis (QDA) was conducted on random samples of posts mentioning pain-related, fatigue-related, respiratory-related, or infection-related symptoms to capture the patient experience with these and associated impacts. Results: Overall, 1724 users (50,390 posts) and 574 users (4531 posts) were included in the metastatic group and adjuvant group, respectively. Among users in the metastatic group, pain, discomfort, and fatigue were the most commonly mentioned symptoms (49.7% and 39.6%, respectively), and in the QDA (258 posts from 134 users), the most frequent impacts related to physical impairments, sleep, and eating habits. Among users in the adjuvant group, pain, discomfort, and respiratory symptoms were the most commonly mentioned (44.8% and 23.9%, respectively), and impacts identified in the QDA (154 posts from 92 users) were mostly related to physical functioning. Conclusions: Findings from this exploratory observational analysis of social media among patients and caregivers informed the lived experience of NSCLC in the era of novel therapies, shedding light on most reported symptoms and their impacts. These findings can be used to inform future research on NSCLC treatment development and patient management. UR - https://cancer.jmir.org/2023/1/e45707 UR - http://dx.doi.org/10.2196/45707 UR - http://www.ncbi.nlm.nih.gov/pubmed/37436789 ID - info:doi/10.2196/45707 ER - TY - JOUR AU - Lee, J. Jane AU - Robles, Gabriel AU - Leyva Vera, A. Christopher AU - Orellana, Roberto E. AU - Graham, M. Susan AU - Nguyen, Anh-Minh AU - Wei, Yingying AU - Sanchez, Hernandez Abraham AU - Dombrowski, C. Julia AU - Simoni, M. Jane PY - 2023/7/12 TI - A Peer-Based Intervention to Increase HIV and Sexually Transmitted Infection Testing Among Latinx Immigrant Sexual Minority Men in the US Pacific Northwest: Pilot Randomized Controlled Trial Conducted During the COVID-19 Pandemic JO - JMIR Form Res SP - e45871 VL - 7 KW - HIV prevention KW - self-testing KW - sexually transmitted infections KW - preexposure prophylaxis KW - peers KW - Latinx immigrants N2 - Background: Hispanic and Latinx gay, bisexual, and other sexual minority men (SMM) are disproportionately affected by HIV in the United States. With the availability of self-testing services, HIV and sexually transmitted infection (STI) testing may be more accessible for Latinx immigrant SMM who face obstacles to obtaining HIV-related services. Combining the potential of self-testing kits and the influence of peer educators may present an opportunity to increase HIV and STI testing and preexposure prophylaxis (PrEP) uptake or linkage to HIV care among Latinx immigrant SMM. Objective: This study aimed to develop and pilot a peer intervention to distribute HIV and STI self-testing kits and provide peer counseling based on the information-motivation-behavioral skills model to increase PrEP uptake and HIV and STI testing among Latinx immigrant SMM. Our evaluation focused on determining the differences in HIV testing, STI testing, and PrEP uptake outcomes between the intervention and control groups. Methods: We conducted semistructured interviews with community stakeholders to elicit factors to consider for training and intervention. The interview findings informed the development of the intervention and peer training protocols. We piloted the intervention with Latinx immigrant SMM and randomly assigned participants to the intervention group, who received peer counseling and HIV and STI self-testing kits, or the control group, who only received peer counseling. We administered baseline, 1-week, 6-week, and 12-week follow-up surveys to assess behaviors related to HIV testing, STI testing, and PrEP uptake. Owing to the COVID-19 pandemic, the intervention components were delivered via web-based modalities. Chi-square tests were performed to examine the associations between HIV testing, STI testing, and PrEP motivation and behaviors across the study arms (intervention vs control). We conducted Cramer V test to determine the strength of the association between study arm and each of the outcome variables. We also assessed the impact of the COVID-19 pandemic on participants. Results: Overall, 50 (intervention, n=30 and control, n=20) Latinx immigrant SMM participated in the program. Participants reported life disruptions owing to COVID-19, with 68% (34/50) reporting job loss after the declaration of the pandemic. After intervention participation, a higher proportion of participants in the intervention group reported having been tested for STIs (76% vs 36.8%; P=.01; Cramer V=0.394). Among the participants in the intervention group, 91% (21/23) reported being motivated to use PrEP compared with 59% (10/17) in the control group (P=.02; Cramer V=0.385). Conclusions: By facilitating access to HIV and STI testing through peer-delivered information, motivational support, and behavioral skills training as well as the provision of self-testing kits, our intervention demonstrated the potential to increase HIV prevention behaviors in Latinx immigrant SMM. Peer-based programs that offer self-testing and internet-based modes of accessing information may be a feasible strategy for reaching Latinx immigrant SMM. Trial Registration: ClinicalTrials.gov NCT03922126; https://clinicaltrials.gov/ct2/show/NCT03922126 UR - https://formative.jmir.org/2023/1/e45871 UR - http://dx.doi.org/10.2196/45871 UR - http://www.ncbi.nlm.nih.gov/pubmed/37436792 ID - info:doi/10.2196/45871 ER - TY - JOUR AU - Booth, Frederick AU - Potts, Courtney AU - Bond, Raymond AU - Mulvenna, Maurice AU - Kostenius, Catrine AU - Dhanapala, Indika AU - Vakaloudis, Alex AU - Cahill, Brian AU - Kuosmanen, Lauri AU - Ennis, Edel PY - 2023/7/6 TI - A Mental Health and Well-Being Chatbot: User Event Log Analysis JO - JMIR Mhealth Uhealth SP - e43052 VL - 11 KW - mental well-being KW - positive psychology KW - data analysis KW - health care KW - event log analysis KW - ecological momentary assessment KW - conversational user interface KW - user behavior KW - conversational agent KW - user interface KW - user data KW - digital health application KW - mobile health app KW - digital intervention N2 - Background: Conversational user interfaces, or chatbots, are becoming more popular in the realm of digital health and well-being. While many studies focus on measuring the cause or effect of a digital intervention on people?s health and well-being (outcomes), there is a need to understand how users really engage and use a digital intervention in the real world. Objective: In this study, we examine the user logs of a mental well-being chatbot called ChatPal, which is based on the concept of positive psychology. The aim of this research is to analyze the log data from the chatbot to provide insight into usage patterns, the different types of users using clustering, and associations between the usage of the app?s features. Methods: Log data from ChatPal was analyzed to explore usage. A number of user characteristics including user tenure, unique days, mood logs recorded, conversations accessed, and total number of interactions were used with k-means clustering to identify user archetypes. Association rule mining was used to explore links between conversations. Results: ChatPal log data revealed 579 individuals older than 18 years used the app with most users being female (n=387, 67%). User interactions peaked around breakfast, lunchtime, and early evening. Clustering revealed 3 groups including ?abandoning users? (n=473), ?sporadic users? (n=93), and ?frequent transient users? (n=13). Each cluster had distinct usage characteristics, and the features were significantly different (P<.001) across each group. While all conversations within the chatbot were accessed at least once by users, the ?treat yourself like a friend? conversation was the most popular, which was accessed by 29% (n=168) of users. However, only 11.7% (n=68) of users repeated this exercise more than once. Analysis of transitions between conversations revealed strong links between ?treat yourself like a friend,? ?soothing touch,? and ?thoughts diary? among others. Association rule mining confirmed these 3 conversations as having the strongest linkages and suggested other associations between the co-use of chatbot features. Conclusions: This study has provided insight into the types of people using the ChatPal chatbot, patterns of use, and associations between the usage of the app?s features, which can be used to further develop the app by considering the features most accessed by users. UR - https://mhealth.jmir.org/2023/1/e43052 UR - http://dx.doi.org/10.2196/43052 UR - http://www.ncbi.nlm.nih.gov/pubmed/37410539 ID - info:doi/10.2196/43052 ER - TY - JOUR AU - Qian, Yuxing AU - Liu, Zhenghao AU - Lee, J. Edmund W. AU - Wang, Yixi AU - Ni, Zhenni PY - 2023/7/4 TI - Exploring the Incentive Function of Virtual Academic Degrees in a Chinese Online Smoking Cessation Community: Qualitative Content Analysis JO - J Med Internet Res SP - e42260 VL - 25 KW - online smoking cessation community KW - motivational affordances KW - virtual academic degrees KW - digital incentives KW - content analysis N2 - Background: Previous studies on online smoking cessation communities (OSCCs) have shown how such networks contribute to members? health outcomes from behavior influence and social support perspectives. However, these studies rarely considered the incentive function of OSCCs. One of the ways OSCCs motivate smoking cessation behaviors is through digital incentives. Objective: This study aims to explore the incentive function of a novel digital incentive in a Chinese OSCC?the awarding of academic degrees?to promote smoking cessation. It specifically focuses on ?Smoking Cessation Bar,? an OSCC in the popular web-based Chinese forum Baidu Tieba. Methods: We collected discussions about the virtual academic degrees (N= 1193) from 540 members of the ?Smoking Cessation Bar.? The time frame of the data set was from November 15, 2012, to November 3, 2021. Drawing upon motivational affordances theory, 2 coders qualitatively coded the data. Results: We identified five key topics of discussion, including members? (1) intention to get virtual academic degrees (n=38, 2.47%), (2) action to apply for the degrees (n=312, 20.27%), (3) feedback on the accomplishment of goals (n=203, 13.19%), (4) interpersonal interaction (n=794, 51.59%), and (5) expression of personal feelings (n=192, 12.48%). Most notably, the results identified underlying social and psychological motivations behind using the forum to discuss obtaining academic degrees for smoking cessation. Specifically, members were found to engage in sharing behavior (n=423, 27.49%) over other forms of interaction such as providing recommendations or encouragement. Moreover, expressions of personal feelings about achieving degrees were generally positive. It was possible that members hid their negative feelings (such as doubt, carelessness, and dislike) in the discussion. Conclusions: The virtual academic degrees in the OSCC created opportunities for self-presentation for participants. They also improved their self-efficacy to persist in smoking cessation by providing progressive challenges. They served as social bonds connecting different community members, triggering interpersonal interactions, and inducing positive feelings. They also helped realize members? desire to influence or to be influenced by others. Similar nonfinancial rewards could be adopted in various smoking cessation projects to enhance participation and sustainability. UR - https://www.jmir.org/2023/1/e42260 UR - http://dx.doi.org/10.2196/42260 UR - http://www.ncbi.nlm.nih.gov/pubmed/37402146 ID - info:doi/10.2196/42260 ER - TY - JOUR AU - Filipponi, Chiara AU - Chichua, Mariam AU - Masiero, Marianna AU - Mazzoni, Davide AU - Pravettoni, Gabriella PY - 2023/7/3 TI - Cancer Pain Experience Through the Lens of Patients and Caregivers: Mixed Methods Social Media Study JO - JMIR Cancer SP - e41594 VL - 9 KW - pain KW - cancer KW - quality of life KW - social support KW - emotion KW - personality KW - decision-making N2 - Background: Cancer pain represents a challenge for cancer patients and their family members. Despite progression in pain management, pain is still underreported and undertreated, and there is limited information on the related needs that patients and caregivers may have. Online platforms represent a fundamental tool for research to reveal the unmet needs of these users and their emotions outside the medical setting. Objective: This study aimed to (1) reveal the unmet needs of both patients and caregivers and (2) detect the emotional activation associated with cancer pain by analyzing the textual patterns of both users. Methods: A descriptive and quantitative analysis of qualitative data was performed in RStudio v.2022.02.3 (RStudio Team). We analyzed 679 posts (161 from caregivers and 518 from patients) published over 10 years on the ?cancer? subreddit of Reddit to identify unmet needs and emotions related to cancer pain. Hierarchical clustering, and emotion and sentiment analysis were conducted. Results: The language used for describing experiences related to cancer pain and expressed needs differed between patients and caregivers. For patients (agglomerative coefficient=0.72), the large cluster labeled unmet needs included the following clusters: (1A) reported experiences, with the subclusters (a) relationship with doctors/spouse and (b) reflections on physical features; and (1B) changes observed over time, with the subclusters (a) regret and (b) progress. For caregivers (agglomerative coefficient=0.80), the main clusters were as follows: (1A) social support and (1B) reported experiences, with the subclusters (a) psychosocial challenges and (b) grief. Moreover, comparison between the 2 groups (entanglement coefficient=0.28) showed that they shared a common cluster labeled uncertainty. Regarding emotion and sentiment analysis, patients expressed a significantly higher negative sentiment than caregivers (z=?2.14; P<.001). On the contrary, caregivers expressed a higher positive sentiment compared with patients (z=?2.26; P<.001), with trust (z=?4.12; P<.001) and joy (z=?2.03; P<.001) being the most prevalent positive emotions. Conclusions: Our study emphasized different perceptions of cancer pain in patients and caregivers. We revealed different needs and emotional activations in the 2 groups. Moreover, our study findings highlight the importance of considering caregivers in medical care. Overall, this study increases knowledge about the unmet needs and emotions of patients and caregivers, which may have important clinical implications in pain management. UR - https://cancer.jmir.org/2023/1/e41594 UR - http://dx.doi.org/10.2196/41594 UR - http://www.ncbi.nlm.nih.gov/pubmed/37399067 ID - info:doi/10.2196/41594 ER - TY - JOUR AU - Steiner, Artur AU - Farmer, Jane AU - Kamstra, Peter AU - Carlisle, Karen AU - McCosker, Anthony AU - Kilpatrick, Sue PY - 2023/6/28 TI - Online Mental Health Forums and Rural Resilience: Mixed Methods Study and Logic Model JO - JMIR Ment Health SP - e47459 VL - 10 KW - online forums KW - personal resilience KW - mental health KW - rurality KW - logic model N2 - Background: Rural mental health is a growing area of concern internationally, and online mental health forums offer a potential response to addressing service gaps in rural communities. Objective: The objective of this study was to explore and identify pathways by which online peer support mental health forums help to build resilience for rural residents experiencing mental ill-health by contributing to overcoming their specific contextual challenges. Methods: We developed a Theoretical Resilience Framework and applied it to 3000 qualitative posts from 3 Australian online mental health forums and to data from 30 interviews with rural forum users. Results: Drawing on the findings and an abductive approach, a logic model was developed to illustrate links between the resilience resources built and enabling features of forums that make them spaces that facilitate resilience. Conclusions: The study demonstrated that online forums make valuable contributions to social well-being and access to a range of timely support services for rural people experiencing mental ill-health, and, while doing so, involve users in the processes of resilience building. The study provides a new way for practitioners to frame the work of and value produced by forums. It gives a logic model that can be used in evaluation and audit as it facilitates a causal framing of how forums, as an intervention, link with resilience outcomes. Ultimately, the study contributes to developing new knowledge about how rural resilience building can be conceptualized and measured while showing how forums are part of contemporary health service provision in rural places. UR - https://mental.jmir.org/2023/1/e47459 UR - http://dx.doi.org/10.2196/47459 UR - http://www.ncbi.nlm.nih.gov/pubmed/37379080 ID - info:doi/10.2196/47459 ER - TY - JOUR AU - Tao, Xiangyu AU - Fisher, Celia PY - 2023/6/26 TI - Associations Among Web-Based Civic Engagement and Discrimination, Web-Based Social Support, and Mental Health and Substance Use Risk Among LGBT Youth: Cross-Sectional Survey Study JO - J Med Internet Res SP - e46604 VL - 25 KW - lesbian, gay, bisexual, and transgender or nonbinary KW - LGBT adolescents KW - social media KW - discrimination KW - social support KW - mental health KW - substance use N2 - Background: Social media use is ubiquitous among lesbian, gay, bisexual, and transgender or nonbinary (LGBT) adolescents. The time spent on LGBT sites and involvement in social justice?oriented web-based civic activities can increase exposure to heterosexist and transphobic posts, resulting in increases in depression, anxiety, and substance use. Collaborative social justice civic engagement may also increase LGBT adolescents? social support on the web, which may buffer the mental health and substance use risks associated with web-based discrimination. Objective: Drawing on the minority stress and stress-buffering hypotheses, this study aimed to test time spent on LGBT sites, involvement in web-based social justice activities, the mediating effect of web-based discrimination, and the moderating effect of web-based social support on mental health and substance use. Methods: An anonymous web-based survey conducted from October 20 to November 18, 2022, analyzed data from 571 respondents (mean age 16.4, SD 1.1 years): 125 cisgender lesbian girls, 186 cisgender gay boys, 111 cisgender bisexual adolescents, and 149 transgender or nonbinary adolescents. Measures included demographics, web-based LGBT identity disclosure, hours per week spent on LGBT social media sites, engagement in web-based social justice activities (Online Civic Engagement Behavior Construct), exposure to web-based discrimination (Online Victimization Scale), web-based social support (adapted from scales examining web-based interactions), depressive and anxiety symptoms, and substance use (the Patient Health Questionnaire modified for Adolescents; Generalized Anxiety Disorder 7-item; and Car, Relax, Alone, Forget, Friends, Trouble Screening Test). Results: The time spent on LGBT social media sites was unrelated to web-based discrimination after civic engagement was accounted for (90% CI ?0.007 to 0.004). Web-based social justice civic engagement was positively associated with social support (?=.4, 90% CI 0.2-0.4), exposure to discrimination (?=.6, 90% CI 0.5-0.7), and higher substance use risk (?=.2, 90% CI 0.2-0.6). Consistent with minority stress theory, exposure to web-based discrimination fully mediated the positive association between LGBT justice civic engagement and depressive (?=.3, 90% CI 0.2-0.4) and anxiety symptoms (?=.3, 90% CI 0.2-0.4). Web-based social support did not moderate the association between exposure to discrimination with depressive (90% CI ?0.07 to 0.1) and anxiety symptoms (90% CI ?0.06 to 0.1) and substance use (90% CI ?0.04 to 0.01). Conclusions: This study highlights the importance of examining LGBT youth?s specific web-based activities and the need for future research to focus on the intersectional experiences of LGBT adolescents from racial and ethnic minoritized groups through culturally sensitive questions. This study also calls for social media platforms to implement policies that mitigate the effects of algorithms that expose youth to heterosexist and transphobic messaging, such as adopting machine learning algorithms that can efficiently recognize and remove harmful content. UR - https://www.jmir.org/2023/1/e46604 UR - http://dx.doi.org/10.2196/46604 UR - http://www.ncbi.nlm.nih.gov/pubmed/37358882 ID - info:doi/10.2196/46604 ER - TY - JOUR AU - Martin, Philippe AU - Chapoton, Boris AU - Bourmaud, Aurélie AU - Dumas, Agnès AU - Kivits, Joëlle AU - Eyraud, Clara AU - Dubois, Capucine AU - Alberti, Corinne AU - Le Roux, Enora PY - 2023/6/9 TI - Health Promotion in Popular Web-Based Community Games Among Young People: Proposals, Recommendations, and Applications JO - JMIR Serious Games SP - e39465 VL - 11 KW - health promotion KW - web-based community games KW - young people KW - interventional research KW - recommendations N2 - Background: Young people use digital technology on a daily basis and enjoy web-based games that promote social interactions among peers. These interactions in web-based communities can develop social knowledge and life skills. Intervening via existing web-based community games represents an innovative opportunity for health promotion interventions. Objective: The aim of this study was to collect and describe players? proposals for delivering health promotion through existing web-based community games among young people, elaborate on related recommendations adapted from a concrete experience of intervention research, and describe the application of these recommendations in new interventions. Methods: We implemented a health promotion and prevention intervention via a web-based community game (Habbo; Sulake Oy). During the implementation of the intervention, we conducted an observational qualitative study on young people?s proposals via an intercept web-based focus group. We asked 22 young participants (3 groups in total) for their proposals about the best ways to carry out a health intervention in this context. First, using verbatim transcriptions of the players? proposals, we conducted a qualitative thematic analysis. Second, we elaborated on recommendations for action development and implementation based on our experiences and work with a multidisciplinary consortium of experts. Third, we applied these recommendations in new interventions and described their application. Results: A thematic analysis of the participants? proposals revealed 3 main themes and 14 subthemes related to their proposals and process elements: the conditions for developing an attractive intervention within a game, the value of involving peers in developing the intervention, and the ways to mobilize and monitor gamers? participation. These proposals emphasized the importance of interventions involving and moderating a small group of players in a playful manner but with professional aspects. We established 16 domains with 27 recommendations for preparing an intervention and implementing it in web-based games by adopting the codes of game culture. The application of the recommendations showed their usefulness and that it was possible to make adapted and diverse interventions in the game. Conclusions: Integrated health promotion interventions in existing web-based community games have the potential for promoting the health and well-being of young people. There is a need to incorporate specific key aspects of the games and gaming community recommendations, from conception to implementation, to maximize the relevance, acceptability, and feasibility of the interventions integrated in current digital practices. Trial Registration: ClinicalTrials.gov NCT04888208; https://clinicaltrials.gov/ct2/show/NCT04888208 UR - https://games.jmir.org/2023/1/e39465 UR - http://dx.doi.org/10.2196/39465 UR - http://www.ncbi.nlm.nih.gov/pubmed/37294609 ID - info:doi/10.2196/39465 ER - TY - JOUR AU - Leung, W. Yvonne AU - Ng, Steve AU - Duan, Lauren AU - Lam, Claire AU - Chan, Kenith AU - Gancarz, Mathew AU - Rennie, Heather AU - Trachtenberg, Lianne AU - Chan, P. Kai AU - Adikari, Achini AU - Fang, Lin AU - Gratzer, David AU - Hirst, Graeme AU - Wong, Jiahui AU - Esplen, Jane Mary PY - 2023/6/9 TI - Therapist Feedback and Implications on Adoption of an Artificial Intelligence?Based Co-Facilitator for Online Cancer Support Groups: Mixed Methods Single-Arm Usability Study JO - JMIR Cancer SP - e40113 VL - 9 KW - cancer KW - recommender system KW - natural language processing KW - LIWC KW - emotion analysis KW - therapist adoption KW - therapist attitudes KW - legal implications of AI KW - therapist liability N2 - Background: The recent onset of the COVID-19 pandemic and the social distancing requirement have created an increased demand for virtual support programs. Advances in artificial intelligence (AI) may offer novel solutions to management challenges such as the lack of emotional connections within virtual group interventions. Using typed text from online support groups, AI can help identify the potential risk of mental health concerns, alert group facilitator(s), and automatically recommend tailored resources while monitoring patient outcomes. Objective: The aim of this mixed methods, single-arm study was to evaluate the feasibility, acceptability, validity, and reliability of an AI-based co-facilitator (AICF) among CancerChatCanada therapists and participants to monitor online support group participants? distress through a real-time analysis of texts posted during the support group sessions. Specifically, AICF (1) generated participant profiles with discussion topic summaries and emotion trajectories for each session, (2) identified participant(s) at risk for increased emotional distress and alerted the therapist for follow-up, and (3) automatically suggested tailored recommendations based on participant needs. Online support group participants consisted of patients with various types of cancer, and the therapists were clinically trained social workers. Methods: Our study reports on the mixed methods evaluation of AICF, including therapists? opinions as well as quantitative measures. AICF?s ability to detect distress was evaluated by the patient's real-time emoji check-in, the Linguistic Inquiry and Word Count software, and the Impact of Event Scale-Revised. Results: Although quantitative results showed only some validity of AICF?s ability in detecting distress, the qualitative results showed that AICF was able to detect real-time issues that are amenable to treatment, thus allowing therapists to be more proactive in supporting every group member on an individual basis. However, therapists are concerned about the ethical liability of AICF?s distress detection function. Conclusions: Future works will look into wearable sensors and facial cues by using videoconferencing to overcome the barriers associated with text-based online support groups. International Registered Report Identifier (IRRID): RR2-10.2196/21453 UR - https://cancer.jmir.org/2023/1/e40113 UR - http://dx.doi.org/10.2196/40113 UR - http://www.ncbi.nlm.nih.gov/pubmed/37294610 ID - info:doi/10.2196/40113 ER - TY - JOUR AU - Pendergrast, Tricia PY - 2023/6/8 TI - Description of the Novel Networking, Open Discussion, Engagement, and Self-Promotion (NODES) Framework for the Advancement of Women Physicians on Social Media JO - J Med Internet Res SP - e48965 VL - 25 KW - social media KW - gender equity KW - women in medicine KW - woman physician KW - NODES framework KW - self-promotion KW - networking KW - open discussion UR - https://www.jmir.org/2023/1/e48965 UR - http://dx.doi.org/10.2196/48965 UR - http://www.ncbi.nlm.nih.gov/pubmed/37289490 ID - info:doi/10.2196/48965 ER - TY - JOUR AU - Cao, Yiding AU - Rajendran, Suraj AU - Sundararajan, Prathic AU - Law, Royal AU - Bacon, Sarah AU - Sumner, A. Steven AU - Masuda, Naoki PY - 2023/5/30 TI - Web-Based Social Networks of Individuals With Adverse Childhood Experiences: Quantitative Study JO - J Med Internet Res SP - e45171 VL - 25 KW - adverse childhood experience KW - ACE KW - social networks KW - Twitter KW - Reddit KW - childhood KW - abuse KW - neglect KW - violence KW - substance use KW - coping strategy KW - coping KW - interpersonal connection KW - web-based connection KW - behavior KW - social connection KW - resilience N2 - Background: Adverse childhood experiences (ACEs), which include abuse and neglect and various household challenges such as exposure to intimate partner violence and substance use in the home, can have negative impacts on the lifelong health of affected individuals. Among various strategies for mitigating the adverse effects of ACEs is to enhance connectedness and social support for those who have experienced them. However, how the social networks of those who experienced ACEs differ from the social networks of those who did not is poorly understood. Objective: In this study, we used Reddit and Twitter data to investigate and compare social networks between individuals with and without ACE exposure. Methods: We first used a neural network classifier to identify the presence or absence of public ACE disclosures in social media posts. We then analyzed egocentric social networks comparing individuals with self-reported ACEs with those with no reported history. Results: We found that, although individuals reporting ACEs had fewer total followers in web-based social networks, they had higher reciprocity in following behavior (ie, mutual following with other users), a higher tendency to follow and be followed by other individuals with ACEs, and a higher tendency to follow back individuals with ACEs rather than individuals without ACEs. Conclusions: These results imply that individuals with ACEs may try to actively connect with others who have similar previous traumatic experiences as a positive connection and coping strategy. Supportive interpersonal connections on the web for individuals with ACEs appear to be a prevalent behavior and may be a way to enhance social connectedness and resilience in those who have experienced ACEs. UR - https://www.jmir.org/2023/1/e45171 UR - http://dx.doi.org/10.2196/45171 UR - http://www.ncbi.nlm.nih.gov/pubmed/37252791 ID - info:doi/10.2196/45171 ER - TY - JOUR AU - Ahmad, Awais AU - Premanandan, Shweta AU - Langegård, Ulrica AU - Cajander, Åsa AU - Johansson, Birgitta AU - Carlsson, Maria AU - Tiblom Ehrsson, Ylva PY - 2023/5/30 TI - Positive Design Framework for Carer eSupport: Qualitative Study to Support Informal Caregivers of Patients With Head and Neck Cancer in Sweden JO - JMIR Cancer SP - e45748 VL - 9 KW - eHealth KW - subjective well-being KW - positive design KW - adaptability KW - informal caregivers KW - head and neck cancer KW - preparedness to care N2 - Background: Informal caregivers of patients with head and neck cancer (HNC), such as the patient?s spouse, other close relatives, or friends, can play an important role in home-based treatment and health care. Research shows that informal caregivers are usually unprepared for this responsibility and need support with taking care of patients and other daily life activities. These circumstances place them in a vulnerable position, and their well-being may be compromised. This study is part of our ongoing project Carer eSupport, which aims to develop a web-based intervention to facilitate informal caregivers in the home environment. Objective: This study aimed to explore the situation and context of informal caregivers of patients with HNC and their needs for designing and developing a web-based intervention (Carer eSupport). In addition, we proposed a novel framework for the development of a web-based intervention aimed at promoting the well-being of informal caregivers. Methods: Focus groups were conducted with 15 informal caregivers and 13 health care professionals. Both informal caregivers and health care professionals were recruited from 3 university hospitals in Sweden. We adopted a thematic data analysis process to analyze the data. Results: We investigated informal caregivers? needs, critical factors for adoption, and desired functionalities of Carer eSupport. A total of 4 major themes, including information, web-based forum, virtual meeting place, and chatbot, emerged and were discussed by informal caregivers and health care professionals for Carer eSupport. However, most study participants did not like the idea of a chatbot for asking questions and retrieving information and expressed their concerns such as a lack of trust in robotic technologies and missing human contact while communicating with chatbots. The results from the focus groups were discussed through the lens of positive design research approaches. Conclusions: This study provided an in-depth understanding of informal caregivers? contexts and their preferred functions for a web-based intervention (Carer eSupport). Using the theoretical foundation of designing for well-being and positive design in the informal caregiving context, we proposed a positive design framework to support informal caregivers? well-being. Our proposed framework might be helpful for human-computer interaction and user experience researchers to design meaningful eHealth interventions with a clear focus on users? well-being and positive emotions, especially for informal caregivers of patients with HNC. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2021-057442 UR - https://cancer.jmir.org/2023/1/e45748 UR - http://dx.doi.org/10.2196/45748 UR - http://www.ncbi.nlm.nih.gov/pubmed/37252765 ID - info:doi/10.2196/45748 ER - TY - JOUR AU - Dong, Wei AU - Liu, Yongmei AU - Zhu, Zhangxiang AU - Cao, Xianye PY - 2023/5/29 TI - The Impact of Ambivalent Attitudes on the Helpfulness of Web-Based Reviews: Secondary Analysis of Data From a Large Physician Review Website JO - J Med Internet Res SP - e38306 VL - 25 KW - web-based review helpfulness KW - ambivalent attitudes KW - risk reduction KW - the tripartite model of attitudes KW - mobile phone N2 - Background: Previously, most studies used 5-star and 1-star ratings to represent reviewers? positive and negative attitudes, respectively. However, this premise is not always true because individuals? attitudes have more than one dimension. In particular, given the credence traits of medical service, to build durable physician-patient relationships, patients may rate their physicians with high scores to avoid lowering their physicians? web-based ratings and help build their physicians? web-based reputations. Some patients may express complaints only in review texts, resulting in ambivalence, such as conflicting feelings, beliefs, and reactions toward physicians. Thus, web-based rating platforms for medical services may face more ambivalence than platforms for search or experience goods. Objective: On the basis of the tripartite model of attitudes and uncertainty reduction theory, this study aims to consider both the numerical rating and sentiment of each web-based review to explore whether there is ambivalence and how ambivalent attitudes influence the helpfulness of web-based reviews. Methods: This study collected 114,378 reviews of 3906 physicians on a large physician review website. Then, based on existing literature, we operationalized numerical ratings as the cognitive dimension of attitudes and sentiment in review texts as the affective dimension of attitudes. Several econometric models, including the ordinary least squares model, logistic regression model, and Tobit model, were used to test our research model. Results: First, this study confirmed the existence of ambivalence in each web-based review. Then, by measuring ambivalence through the inconsistency between the numerical rating and sentiment for each review, this study found that the ambivalence in different web-based reviews has a different impact on the helpfulness of the reviews. Specifically, for reviews with positive emotional valence, the higher the degree of inconsistency between the numerical rating and sentiment, the greater the helpfulness is (?positive 1=.046; P<.001). For reviews with negative and neutral emotional valence, the impact is opposite, that is, the higher the degree of inconsistency between the numerical rating and sentiment, the lesser the helpfulness is (?negative 1=?.059, P<.001; ?neutral 1=?.030, P=.22). Considering the traits of the data, the results were also verified using the logistic regression model (?positive 1=0.056, P=.005; ?negative 1=?0.080, P<.001; ?neutral 1=?0.060, P=.03) and Tobit model. Conclusions: This study confirmed the existence of ambivalence between the cognitive and affective dimensions in single reviews and found that for reviews with positive emotional valence, the ambivalent attitudes lead to more helpfulness, but for reviews with negative and neutral emotion valence, the ambivalence attitudes lead to less helpfulness. The results contribute to the web-based review literature and inspire a better design for rating mechanisms in review websites to enhance the helpfulness of reviews. UR - https://www.jmir.org/2023/1/e38306 UR - http://dx.doi.org/10.2196/38306 UR - http://www.ncbi.nlm.nih.gov/pubmed/37247213 ID - info:doi/10.2196/38306 ER - TY - JOUR AU - Moy, J. Amanda AU - Withall, Jennifer AU - Hobensack, Mollie AU - Yeji Lee, Rachel AU - Levy, R. Deborah AU - Rossetti, C. Sarah AU - Rosenbloom, Trent S. AU - Johnson, Kevin AU - Cato, Kenrick PY - 2023/5/17 TI - Eliciting Insights From Chat Logs of the 25X5 Symposium to Reduce Documentation Burden: Novel Application of Topic Modeling JO - J Med Internet Res SP - e45645 VL - 25 KW - topic modeling KW - content analysis KW - online chat KW - virtual conference KW - documentation burden KW - burnout KW - physicians KW - nurses KW - policy KW - symposium KW - chat bot N2 - Background: Addressing clinician documentation burden through ?targeted solutions? is a growing priority for many organizations ranging from government and academia to industry. Between January and February 2021, the 25 by 5: Symposium to Reduce Documentation Burden on US Clinicians by 75% (25X5 Symposium) convened across 2 weekly 2-hour sessions among experts and stakeholders to generate actionable goals for reducing clinician documentation over the next 5 years. Throughout this web-based symposium, we passively collected attendees? contributions to a chat functionality?with their knowledge that the content would be deidentified and made publicly available. This presented a novel opportunity to synthesize and understand participants? perceptions and interests from chat messages. We performed a content analysis of 25X5 Symposium chat logs to identify themes about reducing clinician documentation burden. Objective: The objective of this study was to explore unstructured chat log content from the web-based 25X5 Symposium to elicit latent insights on clinician documentation burden among clinicians, health care leaders, and other stakeholders using topic modeling. Methods: Across the 6 sessions, we captured 1787 messages among 167 unique chat participants cumulatively; 14 were private messages not included in the analysis. We implemented a latent Dirichlet allocation (LDA) topic model on the aggregated dataset to identify clinician documentation burden topics mentioned in the chat logs. Coherence scores and manual examination informed optimal model selection. Next, 5 domain experts independently and qualitatively assigned descriptive labels to model-identified topics and classified them into higher-level categories, which were finalized through a panel consensus. Results: We uncovered ten topics using the LDA model: (1) determining data and documentation needs (422/1773, 23.8%); (2) collectively reassessing documentation requirements in electronic health records (EHRs) (252/1773, 14.2%); (3) focusing documentation on patient narrative (162/1773, 9.1%); (4) documentation that adds value (147/1773, 8.3%); (5) regulatory impact on clinician burden (142/1773, 8%); (6) improved EHR user interface and design (128/1773, 7.2%); (7) addressing poor usability (122/1773, 6.9%); (8) sharing 25X5 Symposium resources (122/1773, 6.9%); (9) capturing data related to clinician practice (113/1773, 6.4%); and (10) the role of quality measures and technology in burnout (110/1773, 6.2%). Among these 10 topics, 5 high-level categories emerged: consensus building (821/1773, 46.3%), burden sources (365/1773, 20.6%), EHR design (250/1773, 14.1%), patient-centered care (162/1773, 9.1%), and symposium comments (122/1773, 6.9%). Conclusions: We conducted a topic modeling analysis on 25X5 Symposium multiparticipant chat logs to explore the feasibility of this novel application and elicit additional insights on clinician documentation burden among attendees. Based on the results of our LDA analysis, consensus building, burden sources, EHR design, and patient-centered care may be important themes to consider when addressing clinician documentation burden. Our findings demonstrate the value of topic modeling in discovering topics associated with clinician documentation burden using unstructured textual content. Topic modeling may be a suitable approach to examine latent themes presented in web-based symposium chat logs. UR - https://www.jmir.org/2023/1/e45645 UR - http://dx.doi.org/10.2196/45645 UR - http://www.ncbi.nlm.nih.gov/pubmed/37195741 ID - info:doi/10.2196/45645 ER - TY - JOUR AU - Alhaboby, A. Zhraa AU - Barnes, James AU - Evans, Hala AU - Short, Emma PY - 2023/5/17 TI - Cybervictimization of Adults With Long-term Conditions: Cross-sectional Study JO - J Med Internet Res SP - e39933 VL - 25 KW - cyberharassment KW - chronic conditions KW - disability KW - social media KW - cyberbullying KW - web-based hate N2 - Background: People living with chronic conditions and disabilities experience harassment both offline and on the web. Cybervictimization is an umbrella term for negative web-based experiences. It has distressing consequences on physical health, mental well-being, and social relationships. These experiences have mostly been documented among children and adolescents. However, the scope of such experiences is not well documented among adults with long-term conditions, and the potential impact has not been examined from a public health perspective. Objective: This study aimed to examine the scope of cybervictimization among adults living with long-term conditions in the United Kingdom and the perceived impact on self-management of chronic conditions. Methods: This paper reports the findings of the quantitative phase of a mixed methods study in the United Kingdom. This cross-sectional study targeted adults aged ?18 years with long-term conditions. Using a web-based link, the survey was shared on the web via 55 victim support groups, health support organizations, and social media accounts of nongovernmental organizations and activists such as journalists and disability campaigners. People with long-term conditions were asked about their health conditions, comorbidities, self-management, negative web-based experiences, their impact on them, and support sought to mitigate the experiences. The perceived impact of cybervictimization was measured using a set of questions on a Likert scale, frequency tables, and the Stanford Self-Efficacy for Managing Chronic Diseases Scale. Demographic data and the impact on self-management were cross-tabulated to identify the demographic characteristics of the targeted individuals and potential conditions with complications and highlight directions for future research. Results: Data from 152 participants showed that almost 1 in every 2 adults with chronic conditions was cybervictimized (69/152, 45.4%). Most victims (53/69, 77%) had disabilities; the relationship between cybervictimization and disability was statistically significant (P=.03). The most common means of contacting the victims was Facebook (43/68, 63%), followed by personal email or SMS text messaging, each accounting for 40% (27/68). Some participants (9/68, 13%) were victimized in web-based health forums. Furthermore, 61% (33/54) of victims reported that experiencing cybervictimization had affected their health condition self-management plan. The highest impact was on lifestyle changes such as exercise, diet, avoiding triggers, and avoiding excessive smoking and alcohol consumption. This was followed by changes to medications and follow-ups with health care professionals. Most victims (38/55, 69%) perceived a worsened self-efficacy on the Self-Efficacy for Managing Chronic Diseases Scale. Formal support was generally rated as poor, with only 25% (13/53) of victims having disclosed this experience to their physicians. Conclusions: Cybervictimization of people with chronic conditions is a public health issue with worrying consequences. This triggered considerable fear and negatively influenced the self-management of different health conditions. Further context- and condition-specific research is needed. Global collaborations to address inconsistencies in research are recommended. UR - https://www.jmir.org/2023/1/e39933 UR - http://dx.doi.org/10.2196/39933 UR - http://www.ncbi.nlm.nih.gov/pubmed/37195761 ID - info:doi/10.2196/39933 ER - TY - JOUR AU - Paquet, Catherine AU - Whitehead, Jocelyne AU - Shah, Rishabh AU - Adams, Mary Alayne AU - Dooley, Damion AU - Spreng, Nathan R. AU - Aunio, Anna-Liisa AU - Dubé, Laurette PY - 2023/5/17 TI - Social Prescription Interventions Addressing Social Isolation and Loneliness in Older Adults: Meta-Review Integrating On-the-Ground Resources JO - J Med Internet Res SP - e40213 VL - 25 KW - social prescription KW - social isolation KW - loneliness KW - intervention KW - older adults KW - knowledge mobilization KW - database management KW - ontology N2 - Background: Social prescription programs represent a viable solution to linking primary care patients to nonmedical community resources for improving patient well-being. However, their success depends on the integration of patient needs with local resources. This integration could be accelerated by digital tools that use expressive ontology to organize knowledge resources, thus enabling the seamless navigation of diverse community interventions and services tailored to the needs of individual users. This infrastructure bears particular relevance for older adults, who experience a range of social needs that impact their health, including social isolation and loneliness. An essential first step in enabling knowledge mobilization and the successful implementation of social prescription initiatives to meet the social needs of older adults is to incorporate the evidence-based academic literature on what works, with on-the-ground solutions in the community. Objective: This study aims to integrate scientific evidence with on-the-ground knowledge to build a comprehensive list of intervention terms and keywords related to reducing social isolation and loneliness in older adults. Methods: A meta-review was conducted using a search strategy combining terms related to older adult population, social isolation and loneliness, and study types relevant to reviews using 5 databases. Review extraction included intervention characteristics, outcomes (social [eg, loneliness, social isolation, and social support] or mental health [eg, psychological well-being, depression, and anxiety]), and effectiveness (reported as consistent, mixed, or not supported). Terms related to identified intervention types were extracted from the reviewed literature as well as descriptions of corresponding community services in Montréal, Canada, available from web-based regional, municipal, and community data sources. Results: The meta-review identified 11 intervention types addressing social isolation and loneliness in older adults by either increasing social interactions, providing instrumental support, promoting mental and physical well-being, or providing home and community care. Group-based social activities, support groups with educational elements, recreational activities, and training or use of information and communication technologies were the most effective in improving outcomes. Examples of most intervention types were found in community data sources. Terms derived from the literature that were the most commonly congruent with those describing existing community services were related to telehealth, recreational activities, and psychological therapy. However, several discrepancies were observed between review-based terms and those addressing the available services. Conclusions: A range of interventions found to be effective at addressing social isolation and loneliness or their impact on mental health were identified from the literature, and many of these interventions were represented in services available to older residents in Montréal, Canada. However, different terms were occasionally used to describe or categorize similar services across data sources. Establishing an efficient means of identifying and structuring such sources is important to facilitate referrals and help-seeking behaviors of older adults and for strategic planning of resources. UR - https://www.jmir.org/2023/1/e40213 UR - http://dx.doi.org/10.2196/40213 UR - http://www.ncbi.nlm.nih.gov/pubmed/37195738 ID - info:doi/10.2196/40213 ER - TY - JOUR AU - Lange-Drenth, Lukas AU - Schulz, Holger AU - Endsin, Gero AU - Bleich, Christiane PY - 2023/5/17 TI - Association of the Extent of Internet Use by Patients With Cancer With Social Support Among Patients and Change in Patient-Reported Treatment Outcomes During Inpatient Rehabilitation: Cross-sectional and Longitudinal Study JO - JMIR Cancer SP - e39246 VL - 9 KW - internet KW - internet use KW - social support KW - perceived social support KW - inpatients KW - patient-reported outcome measures KW - cancer KW - rehabilitation KW - distress KW - fatigue KW - pain N2 - Background: Given the increasing number of cancer survivors and their rising survival rates, rehabilitation plays an increasingly important role. Social support among patients is an essential element of inpatient and day care rehabilitation. The internet can empower patients with cancer to become more active health care consumers and facilitate information and supportive care needs. By contrast, therapists suspect that high internet use during rehabilitation may severely limit social interactions between patients, thus interfering with the patients? rehabilitation program and jeopardizing treatment success. Objective: We hypothesized that the extent of internet use would be negatively related to social support among patients with cancer during their clinical stay as well as fewer improvements in patient-reported treatment outcomes from the first to the last day of their clinical stay. Methods: Patients with cancer participated during their inpatient rehabilitation. Cross-sectional data, such as the extent of participants? internet use and perceived social support among patients, were collected during the last week of their clinic stay. The treatment outcomes, that is, participants? levels of distress, fatigue, and pain, were collected on the first and last day of the clinic stay. We used multiple linear regression analysis to study the association between the extent of internet use and social support among patients with cancer. We used linear mixed model analyses to study the association between the extent of internet use by patients with cancer and the change in patient-reported treatment outcomes. Results: Of the 323 participants, 279 (86.4%) participants reported that they used the internet. The extent of the internet use (t315=0.78; P=.43) was not significantly associated with the perceived social support among the participants during their clinical stay. In addition, the extent of participants? internet use during their clinical stay was not associated with changes in participants? levels of distress (F1,299=0.12; P=.73), fatigue (F1,299=0.19; P=.67), and pain (F1,303=0.92; P=.34) from the first to the last day of their clinical stay. Conclusions: The extent of internet use does not seem to be negatively associated with the perceived social support among patients with cancer or with the change in patients? levels of distress, fatigue, or pain from the first to the last day of their clinical stay. UR - https://cancer.jmir.org/2023/1/e39246 UR - http://dx.doi.org/10.2196/39246 UR - http://www.ncbi.nlm.nih.gov/pubmed/37195742 ID - info:doi/10.2196/39246 ER - TY - JOUR AU - Malhotra, Kashish AU - Dagli, Marcel Mert AU - Santangelo, Gabrielle AU - Wathen, Connor AU - Ghenbot, Yohannes AU - Goyal, Kashish AU - Bawa, Ashvind AU - Ozturk, K. Ali AU - Welch, C. William PY - 2023/5/8 TI - The Digital Impact of Neurosurgery Awareness Month: Retrospective Infodemiology Study JO - JMIR Form Res SP - e44754 VL - 7 KW - #NeurosurgeryAwarenessMonth KW - #Neurosurgery KW - Neurosurgery Awareness Month KW - neurosurgery KW - neural KW - neuro KW - health care awareness event KW - health care KW - awareness KW - infodemiology KW - social media KW - campaign KW - neuroscience KW - neurological KW - sentiment KW - public opinion KW - Google Trends KW - tweet KW - Twitter KW - brain KW - cognition KW - cognitive KW - machine learning algorithm KW - network analysis KW - digital media KW - sentiment analysis KW - node KW - Sentiment Viz KW - scatterplot KW - circumplex model N2 - Background: Neurosurgery Awareness Month (August) was initiated by the American Association of Neurological Surgeons with the aim of bringing neurological conditions to the forefront and educating the public about these conditions. Digital media is an important tool for disseminating information and connecting with influencers, general public, and other stakeholders. Hence, it is crucial to understand the impact of awareness campaigns such as Neurosurgery Awareness Month to optimize resource allocation, quantify the efficiency and reach of these initiatives, and identify areas for improvement. Objective: The purpose of our study was to examine the digital impact of Neurosurgery Awareness Month globally and identify areas for further improvement. Methods: We used 4 social media (Twitter) assessment tools (Sprout Social, SocioViz, Sentiment Viz, and Symplur) and Google Trends to extract data using various search queries. Using regression analysis, trends were studied in the total number of tweets posted in August between 2014 and 2022. Two search queries were used in this analysis: one specifically targeting tweets related to Neurosurgery Awareness Month and the other isolating all neurosurgery-related posts. Total impressions and top influencers for #neurosurgery were calculated using Symplur?s machine learning algorithm. To study the context of the tweets, we used SocioViz to isolate the top 100 popular hashtags, keywords, and collaborations between influencers. Network analysis was performed to illustrate the interactions and connections within the digital media environment using ForceAtlas2 model. Sentiment analysis was done to study the underlying emotion of the tweets. Google Trends was used to study the global search interest by studying relative search volume data. Results: A total of 10,007 users were identified as tweeting about neurosurgery during Neurosurgery Awareness Month using the ?#neurosurgery? hashtag. These tweets generated over 29.14 million impressions globally. Of the top 10 most influential users, 5 were faculty neurosurgeons at US university hospitals. Other influential users included notable organizations and journals in the field of neurosurgery. The network analysis of the top 100 influencers showed a collaboration rate of 81%. However, only 1.6% of the total neurosurgery tweets were advocating about neurosurgery awareness during Neurosurgery Awareness Month, and only 13 tweets were posted by verified users using the #neurosurgeryawarenessmonth hashtag. The sentiment analysis revealed that the majority of the tweets about Neurosurgery Awareness Month were pleasant with subdued emotion. Conclusions: The global digital impact of Neurosurgery Awareness Month is nascent, and support from other international organizations and neurosurgical influencers is needed to yield a significant digital reach. Increasing collaboration and involvement from underrepresented communities may help to increase the global reach. By better understanding the digital impact of Neurosurgery Awareness Month, future health care awareness campaigns can be optimized to increase global awareness of neurosurgery and the challenges facing the field. UR - https://formative.jmir.org/2023/1/e44754 UR - http://dx.doi.org/10.2196/44754 UR - http://www.ncbi.nlm.nih.gov/pubmed/37155226 ID - info:doi/10.2196/44754 ER - TY - JOUR AU - Crawford, Rebecca AU - Sikirica, Slaven AU - Morrison, Ross AU - Cappelleri, C. Joseph AU - Russell-Smith, Alexander AU - Shah, Richa AU - Chadwick, Helen AU - Doward, Lynda PY - 2023/5/1 TI - The Patient Experience of Acute Lymphoblastic Leukemia and Its Treatment: Social Media Review JO - JMIR Cancer SP - e39852 VL - 9 KW - acute lymphoblastic leukemia KW - health-related quality of life KW - qualitative research KW - social media KW - leukemia KW - lymphoblastic KW - adult KW - disease KW - treatment KW - therapy KW - symptoms KW - independence KW - functioning KW - social KW - well-being KW - emotional N2 - Background: Adult patients with acute lymphoblastic leukemia (ALL) report substantial disease- and treatment-related impacts on their health-related quality of life (HRQOL). Patient-reported information (PRI) shared on social media may provide a distinct opportunity to understand the patient experience outside of formal research contexts and help inform the development of novel therapies. Objective: This qualitative social media review aimed to assess PRI shared on social media websites to gain a better understanding of the symptom, HRQOL, and treatment impacts on individuals with ALL. Methods: We identified English-language posts on 3 patient advocacy websites (Patient Power, The Patient Story, and Leukaemia Care) and YouTube that included PRI about experiences with ALL or ALL treatments shared by adults (aged ?18 years) with a self-reported ALL diagnosis. Patients? demographic and disease characteristics were extracted from posts (where available), and the posts were analyzed thematically. A network analysis was conducted to delineate possible associations among ALL symptoms, HRQOL impacts, and treatment-related symptoms and impacts. Results: Of the 935 social media posts identified, 63 (7%) met the review criteria, including 40 (63%) videos, 5 (8%) comments posted in response to videos, and 18 (29%) blog posts. The 63 posts were contributed by 41 patients comprised of 21 (51%) males, 18 females (44%), and 2 (5%) whose gender was not reported. Among the patients, 13 (32%) contributed >1 source of data. Fatigue (n=20, 49%), shortness of breath (n=13, 32%), and bruising (n=12, 29%) were the symptoms prior to treatment most frequently discussed by patients. Patients also reported impacts on personal relationships (n=26, 63%), psychological and emotional well-being (n=25, 61%), and work (n=16, 39%). Although inpatient treatment reportedly restricted patients? independence and social functioning, it also provided a few patients with a sense of safety. Patients frequently relied on their doctors to drive their treatment decisions but were also influenced by family members. The network analysis indicated that disease-related symptoms were primarily associated with patients? physical functioning, activities of daily living, and ability to work, while treatment-related symptoms were primarily associated with emotional well-being. Conclusions: This social media review explored PRI through a thematic analysis of patient-contributed content on patient advocacy websites and YouTube to identify and contextualize emergent themes in patient experiences with ALL and its treatments. To our knowledge, this is the first study to leverage this novel tool to generate new insights into patients? experiences with ALL. Patients? social media posts suggest that inpatient care for ALL is associated with restricted independence and social functioning. However, inpatient care also provided a sense of safety for some patients. Studies such as this one that capture patients? experiences in their own words are valuable tools to further our knowledge of patient outcomes with ALL. UR - https://cancer.jmir.org/2023/1/e39852 UR - http://dx.doi.org/10.2196/39852 UR - http://www.ncbi.nlm.nih.gov/pubmed/37126376 ID - info:doi/10.2196/39852 ER - TY - JOUR AU - Andrade, C. Fernanda AU - Erwin, Savannah AU - Burnell, Kaitlyn AU - Jackson, Jalisa AU - Storch, Marley AU - Nicholas, Julia AU - Zucker, Nancy PY - 2023/4/28 TI - Intervening on Social Comparisons on Social Media: Electronic Daily Diary Pilot Study JO - JMIR Ment Health SP - e42024 VL - 10 KW - social media KW - social comparison KW - young adults KW - social savoring KW - intervention KW - self-esteem KW - depression N2 - Background: Literature has underscored the dark aspects of social media use, including associations with depressive symptoms, feelings of social isolation, and diminished self-esteem. Social comparison, the process of evaluating oneself relative to another person, is thought to contribute to these negative experiences such that people with a stronger tendency to compare themselves with others are particularly susceptible to the detrimental effects of social media. Social media as a form of social connection and communication is nevertheless an inevitable?and arguably integral?part of life, particularly for young adults. Therefore, there is a need to investigate strategies that could alter the manner in which people interact with social media to minimize its detrimental effects and maximize the feelings of affiliation and connection. Objective: This pilot study examined the feasibility, acceptability, and effectiveness of a brief web-based intervention designed to alter engagement with social media and promote psychological well-being by encouraging social savoring as an alternative to social comparison. Social savoring was operationalized as experiencing joyful emotions related to the happiness of someone else?s experiences (ie, feeling happy for someone else). Methods: Following an intensive longitudinal design, 55 college students (mean age 19.29, SD 0.93 years; n=43, 78% women and n=23, 42% White) completed baseline measures (individual differences, psychological well-being, connectedness, and social media use) and then 14 days of daily surveys on their social media activity and well-being. On day 8, the group that was randomized to receive the intervention watched a video instructing them on the skill of social savoring and was asked to practice this skill during days 8 to 14. Results: Overall, participants reported positive perceptions of the intervention. Participants who watched the intervention video reported significantly higher performance self-esteem (P=.02) at posttest than those in the control condition, after controlling for baseline levels. Participants also reported significantly higher state self-esteem (P=.01) on days in which they engaged in more social savoring while using social media, and the use of social savoring increased significantly (P=.01) over time, suggesting that participants found it helpful. Participants in both conditions reported significantly lower levels of social comparison (control: P=.01; intervention: P=.002) and higher levels of connectedness (control: P<.001; intervention: P=.001) at posttest than at baseline. Conclusions: Initial evidence from this pilot study suggests that a web-based social savoring intervention may help minimize the potentially harmful consequences of social media use, at least in some domains. Future work is needed to examine the effectiveness and acceptance of this intervention in different age groups and in clinical samples that are in part characterized by higher levels of comparison with others (eg, people with eating disorders). UR - https://mental.jmir.org/2023/1/e42024 UR - http://dx.doi.org/10.2196/42024 UR - http://www.ncbi.nlm.nih.gov/pubmed/37115607 ID - info:doi/10.2196/42024 ER - TY - JOUR AU - El Sherif, Reem AU - Pluye, Pierre AU - Paquet, Virginie AU - Ibekwe, Fidelia AU - Grad, Roland PY - 2023/4/28 TI - How People Use Web-Based Parenting Information to Support Others in Their Social Circle: Qualitative Descriptive Study JO - JMIR Pediatr Parent SP - e40043 VL - 6 KW - consumer health information KW - information seeking behavior KW - child development KW - child health KW - information outcomes KW - health information KW - digital health KW - parenting KW - web-based information N2 - Background: Almost two-thirds of the North American population have searched for health information on the web, and the majority report searching on behalf of someone else in their social circle, a phenomenon referred to as proxy seeking. Little is known about how proxy seekers use web-based health information and the outcomes they experience. Objective: The main aim of this study was to explore why proxy seekers used a parenting website on behalf of parents in their social circle and the outcomes they reported. Methods: A qualitative descriptive study was conducted in the context of a partnership with a web-based parenting resource to explore the contexts and motivations for proxy web-based health information seeking, use of information, and subsequent outcomes. A total of 14 participants who self-identified as family members, friends of parents of young children, or professionals who worked with young children were interviewed, and a thematic analysis was conducted. Results: The following 4 reasons for proxy seeking were uncovered: for reassurance, out of personal curiosity, as part of a professional role, or following an explicit request from the parents. Information was used to provide informational support for parents or material support for a child. Positive outcomes of using the information and some of the resulting interpersonal tensions were described. Conclusions: This study provides an in-depth look at proxy seeking behavior and outcomes among users of a web-based parenting resource. UR - https://pediatrics.jmir.org/2023/1/e40043 UR - http://dx.doi.org/10.2196/40043 UR - http://www.ncbi.nlm.nih.gov/pubmed/37115603 ID - info:doi/10.2196/40043 ER - TY - JOUR AU - Lam, Sing Chun AU - Zhou, Keary AU - Loong, Ho-Fung Herbert AU - Chung, Chi-Ho Vincent AU - Ngan, Chun-Kit AU - Cheung, Ting Yin PY - 2023/4/21 TI - The Use of Traditional, Complementary, and Integrative Medicine in Cancer: Data-Mining Study of 1 Million Web-Based Posts From Health Forums and Social Media Platforms JO - J Med Internet Res SP - e45408 VL - 25 KW - traditional KW - complementary KW - integrative KW - social media KW - cancer KW - forums, digital health KW - traditional, complementary, and integrative medicine KW - TCIM KW - perceptions KW - machine learning KW - cancer care N2 - Background: Patients with cancer are increasingly using forums and social media platforms to access health information and share their experiences, particularly in the use of traditional, complementary, and integrative medicine (TCIM). Despite the popularity of TCIM among patients with cancer, few related studies have used data from these web-based sources to explore the use of TCIM among patients with cancer. Objective: This study leveraged multiple forums and social media platforms to explore patients? use, interest, and perception of TCIM for cancer care. Methods: Posts (in English) related to TCIM were collected from Facebook, Twitter, Reddit, and 16 health forums from inception until February 2022. Both manual assessments and natural language processing were performed. Descriptive analyses were performed to explore the most commonly discussed TCIM modalities for each symptom and cancer type. Sentiment analyses were performed to measure the polarity of each post or comment, and themes were identified from posts with positive and negative sentiments. TCIM modalities that are emerging or recommended in the guidelines were identified a priori. Exploratory topic-modeling analyses with latent Dirichlet allocation were conducted to investigate the patients? perceptions of these modalities. Results: Among the 1,620,755 posts available, cancer-related symptoms, such as pain (10/10, 100% cancer types), anxiety and depression (9/10, 90%), and poor sleep (9/10, 90%), were commonly discussed. Cannabis was among the most frequently discussed TCIM modalities for pain in 7 (70%) out of 10 cancer types, as well as nausea and vomiting, loss of appetite, anxiety and depression, and poor sleep. A total of 7 positive and 7 negative themes were also identified. The positive themes included TCIM, making symptoms manageable, and reducing the need for medication and their side effects. The belief that TCIM and conventional treatments were not mutually exclusive and intolerance to conventional treatment may facilitate TCIM use. Conversely, TCIM was viewed as leading to patients? refusal of conventional treatment or delays in diagnosis and treatment. Doctors? ignorance regarding TCIM and the lack of information provided about TCIM may be barriers to its use. Exploratory analyses showed that TCIM recommendations were well discussed among patients; however, these modalities were also used for many other indications. Other notable topics included concerns about the legalization of cannabis, acupressure techniques, and positive experiences of meditation. Conclusions: Using machine learning techniques, social media and health forums provide a valuable resource for patient-generated data regarding the pattern of use and patients? perceptions of TCIM. Such information will help clarify patients? needs and concerns and provide directions for research on integrating TCIM into cancer care. Our results also suggest that effective communication about TCIM should be achieved and that doctors should be more open-minded to actively discuss TCIM use with their patients. UR - https://www.jmir.org/2023/1/e45408 UR - http://dx.doi.org/10.2196/45408 UR - http://www.ncbi.nlm.nih.gov/pubmed/37083752 ID - info:doi/10.2196/45408 ER - TY - JOUR AU - Yao, Franzl Lean AU - Ferawati, Kiki AU - Liew, Kongmeng AU - Wakamiya, Shoko AU - Aramaki, Eiji PY - 2023/4/20 TI - Disruptions in the Cystic Fibrosis Community?s Experiences and Concerns During the COVID-19 Pandemic: Topic Modeling and Time Series Analysis of Reddit Comments JO - J Med Internet Res SP - e45249 VL - 25 KW - COVID-19 KW - Reddit KW - time series analysis KW - BERTopic KW - topic modeling KW - cystic fibrosis N2 - Background: The COVID-19 pandemic disrupted the needs and concerns of the cystic fibrosis community. Patients with cystic fibrosis were particularly vulnerable during the pandemic due to overlapping symptoms in addition to the challenges patients with rare diseases face, such as the need for constant medical aid and limited information regarding their disease or treatments. Even before the pandemic, patients vocalized these concerns on social media platforms like Reddit and formed communities and networks to share insight and information. This data can be used as a quick and efficient source of information about the experiences and concerns of patients with cystic fibrosis in contrast to traditional survey- or clinical-based methods. Objective: This study applies topic modeling and time series analysis to identify the disruption caused by the COVID-19 pandemic and its impact on the cystic fibrosis community?s experiences and concerns. This study illustrates the utility of social media data in gaining insight into the experiences and concerns of patients with rare diseases. Methods: We collected comments from the subreddit r/CysticFibrosis to represent the experiences and concerns of the cystic fibrosis community. The comments were preprocessed before being used to train the BERTopic model to assign each comment to a topic. The number of comments and active users for each data set was aggregated monthly per topic and then fitted with an autoregressive integrated moving average (ARIMA) model to study the trends in activity. To verify the disruption in trends during the COVID-19 pandemic, we assigned a dummy variable in the model where a value of ?1? was assigned to months in 2020 and ?0? otherwise and tested for its statistical significance. Results: A total of 120,738 comments from 5827 users were collected from March 24, 2011, until August 31, 2022. We found 22 topics representing the cystic fibrosis community?s experiences and concerns. Our time series analysis showed that for 9 topics, the COVID-19 pandemic was a statistically significant event that disrupted the trends in user activity. Of the 9 topics, only 1 showed significantly increased activity during this period, while the other 8 showed decreased activity. This mixture of increased and decreased activity for these topics indicates a shift in attention or focus on discussion topics during this period. Conclusions: There was a disruption in the experiences and concerns the cystic fibrosis community faced during the COVID-19 pandemic. By studying social media data, we were able to quickly and efficiently study the impact on the lived experiences and daily struggles of patients with cystic fibrosis. This study shows how social media data can be used as an alternative source of information to gain insight into the needs of patients with rare diseases and how external factors disrupt them. UR - https://www.jmir.org/2023/1/e45249 UR - http://dx.doi.org/10.2196/45249 UR - http://www.ncbi.nlm.nih.gov/pubmed/37079359 ID - info:doi/10.2196/45249 ER - TY - JOUR AU - Chen, T. Annie AU - Huey, Jennifer AU - Coe, Sandra AU - Kaganovsky, Jailanie AU - Malouf, A. Emily AU - Evans, D. Heather AU - Daker, Jill AU - Harper, Elizabeth AU - Fordiani, Olivia AU - Lowe, E. Emma AU - Oldroyd, McGraw Caileigh AU - Price, Ashlyn AU - Roth, Kristlynn AU - Stoddard, Julie AU - Crandell, N. Jill AU - Shirts, H. Brian PY - 2023/4/20 TI - Extended Family Outreach in Hereditary Cancer Using Web-Based Genealogy, Direct-to-Consumer Ancestry Genetics, and Social Media: Mixed Methods Process Evaluation of the ConnectMyVariant Intervention JO - JMIR Cancer SP - e43126 VL - 9 KW - familial cancer KW - hereditary cancer KW - family history KW - pedigree building KW - cascade screening KW - distant relatives KW - breast cancer KW - BRCA1 KW - BRCA2 KW - partner and localizer of BRCA2 KW - PALB2 KW - Facebook KW - patient advocacy N2 - Background: Cascade screening, defined as helping at-risk relatives get targeted genetic testing of familial variants for dominant hereditary cancer syndromes, is a proven component of cancer prevention; however, its uptake is low. We developed and conducted a pilot study of the ConnectMyVariant intervention, in which participants received support to contact at-risk relatives that extended beyond first-degree relatives and encourage relatives to obtain genetic testing and connect with others having the same variant through email and social media. The support that participants received included listening to participants? needs, assisting with documentary genealogy to find common ancestors, facilitating direct-to-consumer DNA testing and interpretation, and assisting with database searches. Objective: We aimed to assess intervention feasibility, motivations for participating, and engagement among ConnectMyVariant participants and their families. Methods: We used a mixed methods design including both quantitative and qualitative evaluation methods. First, we considered intervention feasibility by characterizing recruitment and retention using multiple recruitment mechanisms, including web-based advertising, dissemination of invitations with positive test results, provider recruitment, snowball sampling, and recruitment through web-based social networks and research studies. Second, we characterized participants? motivations, concerns, and engagement through project documentation of participant engagement in outreach activities and qualitative analysis of participant communications. We used an inductive qualitative data analysis approach to analyze emails, free-text notes, and other communications generated with participants as part of the ConnectMyVariant intervention. Results: We identified 84 prospective participants using different recruitment mechanisms; 57 participants were ultimately enrolled in the study for varying lengths of time. With respect to motivations for engaging in the intervention, participants were most interested in activities relating to genealogy and communication with others who had their specific variants. Although there was a desire to find others with the same variant and prevent cancer, more participants expressed an interest in learning about their genealogy and family health history, with prevention in relatives considered a natural side effect of outreach. Concerns about participation included whether relatives would be open to communication, how to go about it, and whether others with a specific variant would be motivated to help find common ancestors. We observed that ConnectMyVariant participants engaged in 6 primary activities to identify and communicate with at-risk relatives: sharing family history, family member testing, direct-to-consumer genealogy genetic testing analysis, contacting (distant) relatives, documentary genealogy, and expanding variant groups or outreach. Participants who connected with others who had the same variant were more likely to engage with several extended family outreach activities. Conclusions: This study demonstrated that there is an interest in extended family outreach as a mechanism to improve cascade screening for hereditary cancer prevention. Additional research to systematically evaluate the outcomes of such outreach may be challenging but is warranted. UR - https://cancer.jmir.org/2023/1/e43126 UR - http://dx.doi.org/10.2196/43126 UR - http://www.ncbi.nlm.nih.gov/pubmed/37079361 ID - info:doi/10.2196/43126 ER - TY - JOUR AU - Cheng, Quan AU - Lin, Yingru PY - 2023/4/20 TI - Multilevel Classification of Users? Needs in Chinese Online Medical and Health Communities: Model Development and Evaluation Based on Graph Convolutional Network JO - JMIR Form Res SP - e42297 VL - 7 KW - online medical health community KW - multilevel classification KW - graph convolutional network KW - cardiovascular disease KW - cardiovascular KW - China KW - online KW - medical KW - community KW - behavior N2 - Background: Online medical and health communities provide a platform for internet users to share experiences and ask questions about medical and health issues. However, there are problems in these communities, such as the low accuracy of the classification of users? questions and the uneven health literacy of users, which affect the accuracy of user retrieval and the professionalism of the medical personnel answering the question. In this context, it is essential to study more effective classification methods of users? information needs. Objective: Most online medical and health communities tend to provide only disease-type labels, which do not give a comprehensive summary of users? needs. The study aims to construct a multilevel classification framework based on the graph convolutional network (GCN) model for users? needs in online medical and health communities so that users can perform more targeted information retrieval. Methods: Using the Chinese online medical and health community ?Qiuyi? as an example, we crawled questions posted by users in the ?Cardiovascular Disease? section as the data source. First, the disease types involved in the problem data were segmented by manual coding to generate the first-level label. Second, the needs were identified by K-means clustering to generate the users? information needs label as the second-level label. Finally, by constructing a GCN model, users? questions were automatically classified, thus realizing the multilevel classification of users? needs. Results: Based on the empirical research of questions posted by users in the ?Cardiovascular Disease? section of Qiuyi, the hierarchical classification of users? questions (data) was realized. The classification models designed in the study achieved accuracy, precision, recall, and F1-score of 0.6265, 0.6328, 0.5788, and 0.5912, respectively. Compared with the traditional machine learning method naïve Bayes and the deep learning method hierarchical text classification convolutional neural network, our classification model showed better performance. At the same time, we also performed a single-level classification experiment on users? needs, which in comparison with the multilevel classification model exhibited a great improvement. Conclusions: A multilevel classification framework has been designed based on the GCN model. The results demonstrated that the method is effective in classifying users? information needs in online medical and health communities. At the same time, users with different diseases have different directions for information needs, which plays an important role in providing diversified and targeted services to the online medical and health community. Our method is also applicable to other similar disease classifications. UR - https://formative.jmir.org/2023/1/e42297 UR - http://dx.doi.org/10.2196/42297 UR - http://www.ncbi.nlm.nih.gov/pubmed/37079346 ID - info:doi/10.2196/42297 ER - TY - JOUR AU - Bui, Tam Kim AU - Li, Zoe AU - Dhillon, M. Haryana AU - Kiely, E. Belinda AU - Blinman, Prunella PY - 2023/4/19 TI - Scanxiety Conversations on Twitter: Observational Study JO - JMIR Cancer SP - e43609 VL - 9 KW - anxiety KW - cancer KW - medical imaging KW - oncology KW - psycho-oncology KW - social media KW - twitter KW - tweet KW - scanxiety KW - mental health KW - sentiment analysis KW - thematic analysis KW - screen time KW - scan KW - hyperawareness KW - radiology N2 - Background: Scan-associated anxiety (or ?scanxiety?) is commonly experienced by people having cancer-related scans. Social media platforms such as Twitter provide a novel source of data for observational research. Objective: We aimed to identify posts on Twitter (or ?tweets?) related to scanxiety, describe the volume and content of these tweets, and describe the demographics of users posting about scanxiety. Methods: We manually searched for ?scanxiety? and associated keywords in cancer-related, publicly available, English-language tweets posted between January 2018 and December 2020. We defined ?conversations? as a primary tweet (the first tweet about scanxiety) and subsequent tweets (interactions stemming from the primary tweet). User demographics and the volume of primary tweets were assessed. Conversations underwent inductive thematic and content analysis. Results: A total of 2031 unique Twitter users initiated a conversation about scanxiety from cancer-related scans. Most were patients (n=1306, 64%), female (n=1343, 66%), from North America (n=1130, 56%), and had breast cancer (449/1306, 34%). There were 3623 Twitter conversations, with a mean of 101 per month (range 40-180). Five themes were identified. The first theme was experiences of scanxiety, identified in 60% (2184/3623) of primary tweets, which captured the personal account of scanxiety by patients or their support person. Scanxiety was often described with negative adjectives or similes, despite being experienced differently by users. Scanxiety had psychological, physical, and functional impacts. Contributing factors to scanxiety included the presence and duration of uncertainty, which was exacerbated during the COVID-19 pandemic. The second theme (643/3623, 18%) was the acknowledgment of scanxiety, where users summarized or labeled an experience as scanxiety without providing emotive clarification, and advocacy of scanxiety, where users raised awareness of scanxiety without describing personal experiences. The third theme was messages of support (427/3623, 12%), where users expressed well wishes and encouraged positivity for people experiencing scanxiety. The fourth theme was strategies to reduce scanxiety (319/3623, 9%), which included general and specific strategies for patients and strategies that required improvements in clinical practice by clinicians or health care systems. The final theme was research about scanxiety (50/3623, 1%), which included tweets about the epidemiology, impact, and contributing factors of scanxiety as well as novel strategies to reduce scanxiety. Conclusions: Scanxiety was often a negative experience described by patients having cancer-related scans. Social media platforms like Twitter enable individuals to share their experiences and offer support while providing researchers with unique data to improve their understanding of a problem. Acknowledging scanxiety as a term and increasing awareness of scanxiety is an important first step in reducing scanxiety. Research is needed to guide evidence-based approaches to reduce scanxiety, though some low-cost, low-resource practical strategies identified in this study could be rapidly introduced into clinical care. UR - https://cancer.jmir.org/2023/1/e43609 UR - http://dx.doi.org/10.2196/43609 UR - http://www.ncbi.nlm.nih.gov/pubmed/37074770 ID - info:doi/10.2196/43609 ER - TY - JOUR AU - Yeo, GeckHong AU - Loo, Gladys AU - Oon, Matt AU - Pang, Rachel AU - Ho, Dean PY - 2023/4/18 TI - A Digital Peer Support Platform to Translate Online Peer Support for Emerging Adult Mental Well-being: Randomized Controlled Trial JO - JMIR Ment Health SP - e43956 VL - 10 KW - mental health KW - digital health KW - peer support intervention KW - peer emotional disclosure KW - randomized controlled trial N2 - Background: Emerging adulthood (ages 19 to 25 years) is a developmental phase that is marked by increased mental health conditions, especially depression and anxiety. A growing body of work indicates that digital peer emotional support has positive implications for the psychological functioning of emerging adults. There is burgeoning interest among health care professionals, educational stakeholders, and policy makers in understanding the implementation and clinical effectiveness, as well as the associated mechanism of change, of digital peer support as an intervention. Objective: This randomized controlled trial (RCT) examined the effectiveness of a digital peer support intervention over a digital platform?Acceset?for emerging adult psychological well-being with 3 primary aims. First, we evaluated the implementation effectiveness of digital peer support training for individuals providing support (befrienders) and of the digital platform for peer support. Second, we assessed the clinical outcomes of digital peer support in terms of the intervening effect on emerging adult psychological well-being. Third, we investigated the mechanism of change linking the digital peer support intervention to emerging adult psychological well-being. Methods: This RCT involving 100 emerging adults from the National University of Singapore follows the published protocol for this trial. Results: This RCT found effectiveness in digital peer support training?specifically, befrienders? peer support responses demonstrating significantly higher post- than pretraining scores in selfhood (posttraining score: mean 62.83, SD 10.18, and SE 1.72; pretraining score: mean 54.86, SD 7.32, and SE 1.24; t34=3.88; P<.001). The digital peer support intervention demonstrated clinical effectiveness in enhancing selfhood, compassion, and mindfulness and lowering depressive and anxiety symptoms among seekers in the intervention group after the intervention (mean 7.15, SD 5.14; SE 0.88) than among seekers in the waitlist control group before the intervention (mean 11.75, SD 6.72; SE 0.89; t89=3.44; P<.001). The effect of the intervention on seekers? psychological well-being was sustained beyond the period of the intervention. The mechanism of change revealed that seekers? engagement with the intervention had both immediate and prospective implications for their psychological well-being. Conclusions: This RCT of a digital peer support intervention for emerging adult psychological well-being harnesses the interventional potential of 4 components of psychological well-being and elucidated a mechanism of change. By incorporating and validating the digital features and process of a peer support platform, our RCT provides the parameters and conditions for deploying an effective and novel digital peer support intervention for emerging adult psychological well-being in real-world settings. Trial Registration: ClinicalTrials.gov NCT05083676; https://clinicaltrials.gov/ct2/show/NCT05083676 UR - https://mental.jmir.org/2023/1/e43956 UR - http://dx.doi.org/10.2196/43956 UR - http://www.ncbi.nlm.nih.gov/pubmed/36756843 ID - info:doi/10.2196/43956 ER - TY - JOUR AU - Kjærulff, Mølholm Emilie AU - Andersen, Helms Tue AU - Kingod, Natasja AU - Nexø, Andersen Mette PY - 2023/4/17 TI - When People With Chronic Conditions Turn to Peers on Social Media to Obtain and Share Information: Systematic Review of the Implications for Relationships With Health Care Professionals JO - J Med Internet Res SP - e41156 VL - 25 KW - patient-physician relationship KW - social media KW - internet KW - health information KW - diabetes KW - chronic diseases KW - systematic review KW - information-seeking behavior KW - retrieval KW - sharing N2 - Background: People living with chronic conditions such as diabetes turn to peers on social media to obtain and share information. Although social media use has grown dramatically in the past decade, little is known about its implications for the relationships between people with chronic conditions and health care professionals (HCPs). Objective: We aimed to systematically review the content and quality of studies examining what the retrieval and sharing of information by people with chronic conditions on social media implies for their relationships with HCPs. Methods: We conducted a search of studies in MEDLINE (Ovid), Embase (Ovid), PsycINFO (Ovid), and CINAHL (EBSCO). Eligible studies were primary studies; examined social media use; included adults with any type of diabetes, cardiovascular diseases that are closely linked with diabetes, obesity, hypertension, or dyslipidemia; and reported on the implications for people with chronic conditions?HCP relationships when people with chronic conditions access and share information on social media. We used the Mixed Methods Appraisal Tool version 2018 to assess the quality of the studies, and the included studies were narratively synthesized. Results: Of the 3111 screened studies, 17 (0.55%) were included. Most studies (13/17, 76%) were of low quality. The narrative synthesis identified implications for people with chronic conditions?HCP relationships when people with chronic conditions access and share information on social media, divided into 3 main categories with 7 subcategories. These categories of implications address how the peer interactions of people with chronic conditions on social media can influence their communication with HCPs, how people with chronic conditions discuss advice and medical information from HCPs on social media, and how relationships with HCPs are discussed by people with chronic conditions on social media. The implications are illustrated collectively in a conceptual model. Conclusions: More evidence is needed to draw conclusions, but the findings indicate that the peer interactions of people with chronic conditions on social media are implicated in the ways in which people with chronic conditions equip themselves for clinical consultations, evaluate the information and advice provided by HCPs, and manage their relationships with HCPs. Future populations with chronic conditions will be raised in a digital world, and social media will likely remain a strategy for obtaining support and information. However, the generally low quality of the studies included in this review points to the relatively immature state of research exploring social media and its implications for people with chronic conditions?HCP relationships. Better study designs and methods for conducting research on social media are needed to generate robust evidence. UR - https://www.jmir.org/2023/1/e41156 UR - http://dx.doi.org/10.2196/41156 UR - http://www.ncbi.nlm.nih.gov/pubmed/37067874 ID - info:doi/10.2196/41156 ER - TY - JOUR AU - Choudhury, Avishek PY - 2023/4/7 TI - Impact of Social Isolation, Physician-Patient Communication, and Self-perception on the Mental Health of Patients With Cancer and Cancer Survivors: National Survey Analysis JO - Interact J Med Res SP - e45382 VL - 12 KW - cancer communication KW - cancer stigma KW - mental health KW - social isolation KW - cancer survivorship KW - patient-centeredness N2 - Background: Cancer is perceived as a life-threatening, fear-inducing, and stigmatized disease. Most patients with cancer and cancer survivors commonly experience social isolation, negative self-perception, and psychological distress. The heavy toll that cancer takes on patients continues even after treatment. It is common for many patients with cancer to feel uncertain about their future. Some undergo anxiety, loneliness, and fear of getting cancer again. Objective: This study examined the impact of social isolation, self-perception, and physician-patient communication on the mental health of patients with cancer and cancer survivors. The study also explored the impact of social isolation and physician-patient communication on self-perception. Methods: This retrospective study used restricted data from the 2021 Health Information National Trends Survey (HINTS), which collected data from January 11, 2021, to August 20, 2021. We used the partial least squares structural equation modeling (PLS-SEM) method for data analysis. We checked for quadratic effects among all the paths connecting social isolation, poor physician-patient communication, mental health (measured using the 4-item Patient Health Questionnaire [PHQ-4]), and negative self-perception. The model was controlled for confounding factors such as respondents? annual income, education level, and age. Bias-corrected and accelerated (BCA) bootstrap methods were used to estimate nonparametric CIs. Statistical significance was tested at 95% CI (2-tailed). We also conducted a multigroup analysis in which we created 2 groups. Group A consisted of newly diagnosed patients with cancer who were undergoing cancer treatment during the survey or had received cancer treatment within the last 12 months (receipt of cancer treatment during the COVID-19 pandemic). Group B consisted of respondents who had received cancer treatment between 5 and 10 years previously (receipt of cancer treatment before the COVID-19 pandemic). Results: The analysis indicated that social isolation had a quadratic effect on mental health, with higher levels of social isolation associated with worse mental health outcomes up to a certain point. Self-perception positively affected mental health, with higher self-perception associated with better mental health outcomes. In addition, physician-patient communication significantly indirectly affected mental health via self-perception. Conclusions: The findings of this study provide important insights into the factors that affect the mental health of patients with cancer. Our results suggest that social isolation, negative self-perception, and communication with care providers are significantly related to mental health in patients with cancer. UR - https://www.i-jmr.org/2023/1/e45382 UR - http://dx.doi.org/10.2196/45382 UR - http://www.ncbi.nlm.nih.gov/pubmed/37027201 ID - info:doi/10.2196/45382 ER - TY - JOUR AU - Dadich, Ann AU - Wells, Rebecca AU - Williams, J. Sharon AU - Taskin, Nazim AU - Coskun, Mustafa AU - Grenier, Corinne AU - Ponsignon, Frederic AU - Scahill, Shane AU - Best, Stephanie PY - 2023/3/15 TI - Cues Disseminated by Professional Associations That Represent 5 Health Care Professions Across 5 Nations: Lexical Analysis of Tweets JO - J Med Internet Res SP - e42927 VL - 25 KW - professional associations KW - social media KW - professional identity KW - collaboration KW - knowledge translation N2 - Background: Collaboration across health care professions is critical in efficiently and effectively managing complex and chronic health conditions, yet interprofessional care does not happen automatically. Professional associations have a key role in setting a profession?s agenda, maintaining professional identity, and establishing priorities. The associations? external communication is commonly undertaken through social media platforms, such as Twitter. Despite the valuable insights potentially available into professional associations through such communication, to date, their messaging has not been examined. Objective: This study aimed to identify the cues disseminated by professional associations that represent 5 health care professions spanning 5 nations. Methods: Using a back-iterative application programming interface methodology, public tweets were sourced from professional associations that represent 5 health care professions that have key roles in community-based health care: general practice, nursing, pharmacy, physiotherapy, and social work. Furthermore, the professional associations spanned Australia, Canada, New Zealand, the United Kingdom, and the United States. A lexical analysis was conducted of the tweets using Leximancer (Leximancer Pty Ltd) to clarify relationships within the discourse. Results: After completing a lexical analysis of 50,638 tweets, 7 key findings were identified. First, the discourse was largely devoid of references to interprofessional care. Second, there was no explicit discourse pertaining to physiotherapists. Third, although all the professions represented in this study support patients, discourse pertaining to general practitioners was most likely to be connected with that pertaining to patients. Fourth, tweets pertaining to pharmacists were most likely to be connected with discourse pertaining to latest and research. Fifth, tweets about social workers were unlikely to be connected with discourse pertaining to health or care. Sixth, notwithstanding a few exceptions, the findings across the different nations were generally similar, suggesting their generality. Seventh and last, tweets pertaining to physiotherapists were most likely to refer to discourse pertaining to profession. Conclusions: The findings indicate that health care professional associations do not use Twitter to disseminate cues that reinforce the importance of interprofessional care. Instead, they largely use this platform to emphasize what they individually deem to be important and advance the interests of their respective professions. Therefore, there is considerable opportunity for professional associations to assert how the profession they represent complements other health care professions and how the professionals they represent can enact interprofessional care for the benefit of patients and carers. UR - https://www.jmir.org/2023/1/e42927 UR - http://dx.doi.org/10.2196/42927 UR - http://www.ncbi.nlm.nih.gov/pubmed/36920443 ID - info:doi/10.2196/42927 ER - TY - JOUR AU - Wang, Rui AU - Cong, Shengnan AU - Sha, Lijuan AU - Sun, Xiaoqing AU - Zhu, Rong AU - Feng, Jingyi AU - Wang, Jianfang AU - Tang, Xiaomei AU - Zhao, Dan AU - Zhu, Qing AU - Fan, Xuemei AU - Ren, Ziqi AU - Zhang, Aixia PY - 2023/3/15 TI - Association Between Social Networking Site Use Intensity and Depression Among Chinese Pregnant Women: Cross-sectional Study JO - J Med Internet Res SP - e41793 VL - 25 KW - antenatal depression KW - social network site KW - social media KW - WeChat KW - upward social comparison KW - rumination N2 - Background: Despite extensive debates about the mental health impacts of the use of social networking sites (SNSs), including WeChat, the association and mechanisms between social interaction of WeChat use intensity and antenatal depression are unclear. Objective: We aimed to test the mediating roles of upward social comparison on social interaction of WeChat and rumination in the association between social interaction of WeChat use intensity and antenatal depression. Methods: A cross-sectional survey was conducted in four hospitals with the self-reported measures of social interaction of WeChat use intensity, upward social comparison on social interaction of WeChat, rumination, antenatal depression, and control variables. The mediation analysis was performed through Model 6 from the PROCESS macro 4.0 in SPSS 26. Results: Results from 2661 participants showed that antenatal depression was unrelated to social interaction of WeChat use intensity (P=.54), but was significantly positively related to the attitude toward social interaction of WeChat (P=.01). The direct effect of attitude toward social interaction of WeChat use on antenatal depression was not statistically significant (?=?.03, P=.05). The results supported an indirect relationship between attitude toward social interaction of WeChat use and antenatal depression via (1) upward social comparison on social interaction of WeChat (indirect effect value=0.04, 95% CI 0.03 to 0.06); (2) rumination (indirect effect value=?0.02, 95% CI ?0.04 to ?0.01); and (3) upward social comparison on social interaction of WeChat and rumination in sequence (indirect effect value=0.07, 95% CI 0.06 to 0.08). Conclusions: Our findings highlight the necessity of focusing on attitudes toward SNS use, and the importance of upward social comparison and rumination in understanding the effect of SNS use on antenatal depression. UR - https://www.jmir.org/2023/1/e41793 UR - http://dx.doi.org/10.2196/41793 UR - http://www.ncbi.nlm.nih.gov/pubmed/36920458 ID - info:doi/10.2196/41793 ER - TY - JOUR AU - Willis, Erin AU - Friedel, Kate AU - Heisten, Mark AU - Pickett, Melissa AU - Bhowmick, Amrita PY - 2023/3/13 TI - Communicating Health Literacy on Prescription Medications on Social Media: In-depth Interviews With ?Patient Influencers? JO - J Med Internet Res SP - e41867 VL - 25 KW - social media KW - social media influencer KW - pharmaceutical advertising KW - health literacy N2 - Background: Historically, pharmaceutical companies have struggled with trust and brand reputation among key stakeholders and have adopted innovative marketing strategies to reach patients directly and rebuild those relationships. Social media influencers are a popular strategy to influence younger demographics, including Generation Z and millennials. It is common for social media influencers to work in paid partnerships with brands; this is a multibillion-dollar industry. Long have patients been active in online health communities and social media platforms such as Twitter and Instagram, but in recent years, pharmaceutical marketers have noticed the power of patient persuasion and begun to leverage ?patient influencers? in brand campaigns. Objective: This study aimed to explore how patient influencers communicate health literacy on pharmaceutical medications on social media to their communities of followers. Methods: A total of 26 in-depth interviews were conducted with patient influencers using a snowball sampling technique. This study is part of a larger project using an interview guide that included a range of topics such as social media practices, logistics of being an influencer, considerations for brand partnerships, and views on the ethical nature of patient influencers. The constructs of the Health Belief Model were used in this study?s data analysis: perceived susceptibility, perceived severity, perceived benefits, perceived barriers, cues to action, and self-efficacy. This study was approved by the institutional review board of the University of Colorado and adhered to ethical standards in interview practice. Results: As patient influencers are a new phenomenon, it was our goal to identify how health literacy on prescription medications and pharmaceuticals is being communicated on social media. Using the constructs of the Health Belief Model to guide the analysis, 3 themes were identified: understanding disease through experience, staying informed on the science or field, and suggesting that physicians know best. Conclusions: Patients are actively exchanging health information on social media channels and connecting with other patients who share similar diagnoses. Patient influencers share their knowledge and experience in efforts to help other patients learn about disease self-management and improve their quality of life. Similar to traditional direct-to-consumer advertising, the phenomenon of patient influencers raises ethical questions that need more investigation. In a way, patient influencers are health education agents who may also share prescription medication or pharmaceutical information. They can break down complex health information based on expertise and experience and mitigate the loneliness and isolation that other patients may feel without the support of a community. UR - https://www.jmir.org/2023/1/e41867 UR - http://dx.doi.org/10.2196/41867 UR - http://www.ncbi.nlm.nih.gov/pubmed/36912881 ID - info:doi/10.2196/41867 ER - TY - JOUR AU - Ranjit, S. Yerina AU - Davis, M. Warren AU - Fentem, Andrea AU - Riordan, Raven AU - Roscoe, Rikki AU - Cavazos-Rehg, Patricia PY - 2023/3/10 TI - Text Messages Exchanged Between Individuals With Opioid Use Disorder and Their mHealth e-Coaches: Content Analysis Study JO - JMIR Hum Factors SP - e37351 VL - 10 KW - opioid use disorder KW - opioid KW - opium KW - overdose KW - drug KW - substance use KW - content analysis KW - text message intervention KW - text message KW - text messaging KW - mobile health KW - mHealth KW - social support KW - e-coach KW - counseling KW - mental health KW - depression KW - recovery support KW - eHealth KW - digital health N2 - Background: Opioid use disorder (OUD) has affected 2.2 million people in the United States. About 7.2 million people reported using illicit drugs in 2019, which contributed to over 70,000 overdose deaths. SMS text messaging interventions have been shown to be effective in OUD recovery. However, the interpersonal communication between individuals in OUD treatment and a support team on digital platforms has not been well examined. Objective: This study aims to understand the communication between participants undergoing OUD recovery and their e-coaches by examining the SMS text messages exchanged from the lens of social support and the issues related to OUD treatment. Methods: A content analysis of messages exchanged between individuals recovering from OUD and members of a support team was conducted. Participants were enrolled in a mobile health intervention titled ?uMAT-R,? a primary feature of which is the ability for patients to instantly connect with a recovery support staff or an ?e-coach? via in-app messaging. Our team analyzed dyadic text-based messages of over 12 months. In total, 70 participants? messages and 1196 unique messages were analyzed using a social support framework and OUD recovery topics. Results: Out of 70 participants, 44 (63%) were between the ages of 31 and 50 years, 47 (67%) were female, 41 (59%) were Caucasian, and 42 (60%) reported living in unstable housing conditions. An average of 17 (SD 16.05) messages were exchanged between each participant and their e-coach. Out of 1196 messages, 64% (n=766) messages were sent by e-coaches and 36% (n=430) by participants. Messages of emotional support occurred the most, with 196 occurrences (n=9, 0.8%) and e-coaches (n=187, 15.6%). Messages of material support had 110 occurrences (participants: n=8, 0.7%; e-coaches: n=102, 8.5%). With OUD recovery topics, opioid use risk factors appeared in most (n=72) occurrences (patient: n=66, 5.5%; e-coach: n=6, 0.5%), followed by a message of avoidance of drug use 3.9% (n=47), which occurred mainly from participants. Depression was correlated with messages of social support (r=0.27; P=.02). Conclusions: Individuals with OUD who had mobile health needs tended to engage in instant messaging with the recovery support staff. Participants who are engaged in messaging often engage in conversations around risk factors and avoidance of drug use. Instant messaging services can be instrumental in providing the social and educational support needs of individuals recovering from OUD. UR - https://humanfactors.jmir.org/2023/1/e37351 UR - http://dx.doi.org/10.2196/37351 UR - http://www.ncbi.nlm.nih.gov/pubmed/36897632 ID - info:doi/10.2196/37351 ER - TY - JOUR AU - Mali, Namrata AU - Restrepo, Felipe AU - Abrahams, Alan AU - Sands, Laura AU - Goldberg, M. David AU - Gruss, Richard AU - Zaman, Nohel AU - Shields, Wendy AU - Omaki, Elise AU - Ehsani, Johnathon AU - Ractham, Peter AU - Kaewkitipong, Laddawan PY - 2023/3/2 TI - Safety Concerns in Mobility-Assistive Products for Older Adults: Content Analysis of Online Reviews JO - J Med Internet Res SP - e42231 VL - 25 KW - injury prevention KW - consumer-reported injuries KW - older adults KW - online reviews KW - mobility-assistive devices KW - product failures N2 - Background: Older adults who have difficulty moving around are commonly advised to adopt mobility-assistive devices to prevent injuries. However, limited evidence exists on the safety of these devices. Existing data sources such as the National Electronic Injury Surveillance System tend to focus on injury description rather than the underlying context, thus providing little to no actionable information regarding the safety of these devices. Although online reviews are often used by consumers to assess the safety of products, prior studies have not explored consumer-reported injuries and safety concerns within online reviews of mobility-assistive devices. Objective: This study aimed to investigate injury types and contexts stemming from the use of mobility-assistive devices, as reported by older adults or their caregivers in online reviews. It not only identified injury severities and mobility-assistive device failure pathways but also shed light on the development of safety information and protocols for these products. Methods: Reviews concerning assistive devices were extracted from the ?assistive aid? categories, which are typically intended for older adult use, on Amazon?s US website. The extracted reviews were filtered so that only those pertaining to mobility-assistive devices (canes, gait or transfer belts, ramps, walkers or rollators, and wheelchairs or transport chairs) were retained. We conducted large-scale content analysis of these 48,886 retained reviews by coding them according to injury type (no injury, potential future injury, minor injury, and major injury) and injury pathway (device critical component breakage or decoupling; unintended movement; instability; poor, uneven surface handling; and trip hazards). Coding efforts were carried out across 2 separate phases in which the team manually verified all instances coded as minor injury, major injury, or potential future injury and established interrater reliability to validate coding efforts. Results: The content analysis provided a better understanding of the contexts and conditions leading to user injury, as well as the severity of injuries associated with these mobility-assistive devices. Injury pathways?device critical component failures; unintended device movement; poor, uneven surface handling; instability; and trip hazards?were identified for 5 product types (canes, gait and transfer belts, ramps, walkers and rollators, and wheelchairs and transport chairs). Outcomes were normalized per 10,000 posting counts (online reviews) mentioning minor injury, major injury, or potential future injury by product category. Overall, per 10,000 reviews, 240 (2.4%) described mobility-assistive equipment?related user injuries, whereas 2318 (23.18%) revealed potential future injuries. Conclusions: This study highlights mobility-assistive device injury contexts and severities, suggesting that consumers who posted online reviews attribute most serious injuries to a defective item, rather than user misuse. It implies that many mobility-assistive device injuries may be preventable through patient and caregiver education on how to evaluate new and existing equipment for risk of potential future injury. UR - https://www.jmir.org/2023/1/e42231 UR - http://dx.doi.org/10.2196/42231 UR - http://www.ncbi.nlm.nih.gov/pubmed/36862459 ID - info:doi/10.2196/42231 ER - TY - JOUR AU - Rayland, Amy AU - Andrews, Jacob PY - 2023/2/28 TI - From Social Network to Peer Support Network: Opportunities to Explore Mechanisms of Online Peer Support for Mental Health JO - JMIR Ment Health SP - e41855 VL - 10 KW - peer-to-peer support KW - Facebook KW - social networking sites KW - mental health KW - moderation UR - https://mental.jmir.org/2023/1/e41855 UR - http://dx.doi.org/10.2196/41855 UR - http://www.ncbi.nlm.nih.gov/pubmed/36853738 ID - info:doi/10.2196/41855 ER - TY - JOUR AU - Liang, Elisa AU - Kutok, R. Emily AU - Rosen, K. Rochelle AU - Burke, A. Taylor AU - Ranney, L. Megan PY - 2023/2/23 TI - Effects of Social Media Use on Connectivity and Emotions During Pandemic-Induced School Closures: Qualitative Interview Study Among Adolescents JO - JMIR Ment Health SP - e37711 VL - 10 KW - social media KW - adolescents KW - COVID-19 KW - emotions KW - connectivity N2 - Background: The COVID-19 pandemic provided a unique opportunity to examine social media and technology use during a time in which technology served as adolescents? primary form of socialization. The literature is mixed regarding how increased screen time during this period affected adolescent mental health and well-being. The mechanisms by which screen time use affected adolescent psychosocial outcomes are also unknown. Objective: We aimed to deepen our understanding of how social media and technology use, social connectivity, and emotional well-being intersected during pandemic-related school closures. Methods: English-speaking adolescents aged 13 to 17 years were recruited on Instagram for a brief screening survey; 39 participants were purposefully selected to complete a semistructured interview regarding their social media and technology use during the pandemic. Interview summaries were abstracted from recordings, and deductive codes were created for the primary question stems. These codes were subsequently reviewed for the main themes. Results: The main themes were as follows: adolescent social media and technology use during school closures usually allowed for more and easier social connectivity, but the amount and relative ease of connectivity differed according to purpose and type of use. Emotions, particularly those of stress and happiness, were connected to whether adolescents actively or passively engaged with social media and technology. Conclusions: Our results suggest a nuanced relationship among social media and technology use, adolescent social support, and emotional well-being, including during the pandemic. Specifically, how adolescents use or engage with web-based platforms greatly influences their ability to connect with others and their feelings of stress and happiness. In the context of the COVID-19 pandemic and as technology in general remains at the core of the adolescent experience, future research should continue to examine how adolescents navigate and use web-based spaces in beneficial and harmful ways. This will inform education and interventions that foster healthy social media and technological habits. UR - https://mental.jmir.org/2023/1/e37711 UR - http://dx.doi.org/10.2196/37711 UR - http://www.ncbi.nlm.nih.gov/pubmed/36054613 ID - info:doi/10.2196/37711 ER - TY - JOUR AU - Lin, Shuo-Yu AU - Cheng, Xiaolu AU - Zhang, Jun AU - Yannam, Sindhu Jaya AU - Barnes, J. Andrew AU - Koch, Randy J. AU - Hayes, Rashelle AU - Gimm, Gilbert AU - Zhao, Xiaoquan AU - Purohit, Hemant AU - Xue, Hong PY - 2023/2/13 TI - Social Media Data Mining of Antitobacco Campaign Messages: Machine Learning Analysis of Facebook Posts JO - J Med Internet Res SP - e42863 VL - 25 KW - tobacco control KW - social media campaign KW - content analysis KW - natural language processing KW - topic modeling KW - social media KW - public health KW - tobacco KW - youth KW - Facebook KW - engagement KW - use KW - smoking N2 - Background: Social media platforms provide a valuable source of public health information, as one-third of US adults seek specific health information online. Many antitobacco campaigns have recognized such trends among youth and have shifted their advertising time and effort toward digital platforms. Timely evidence is needed to inform the adaptation of antitobacco campaigns to changing social media platforms. Objective: In this study, we conducted a content analysis of major antitobacco campaigns on Facebook using machine learning and natural language processing (NLP) methods, as well as a traditional approach, to investigate the factors that may influence effective antismoking information dissemination and user engagement. Methods: We collected 3515 posts and 28,125 associated comments from 7 large national and local antitobacco campaigns on Facebook between 2018 and 2021, including the Real Cost, Truth, CDC Tobacco Free (formally known as Tips from Former Smokers, where ?CDC? refers to the Centers for Disease Control and Prevention), the Tobacco Prevention Toolkit, Behind the Haze VA, the Campaign for Tobacco-Free Kids, and Smoke Free US campaigns. NLP methods were used for content analysis, including parsimonious rule?based models for sentiment analysis and topic modeling. Logistic regression models were fitted to examine the relationship of antismoking message-framing strategies and viewer responses and engagement. Results: We found that large campaigns from government and nonprofit organizations had more user engagements compared to local and smaller campaigns. Facebook users were more likely to engage in negatively framed campaign posts. Negative posts tended to receive more negative comments (odds ratio [OR] 1.40, 95% CI 1.20-1.65). Positively framed posts generated more negative comments (OR 1.41, 95% CI 1.19-1.66) as well as positive comments (OR 1.29, 95% CI 1.13-1.48). Our content analysis and topic modeling uncovered that the most popular campaign posts tended to be informational (ie, providing new information), where the key phrases included talking about harmful chemicals (n=43, 43%) as well as the risk to pets (n=17, 17%). Conclusions: Facebook users tend to engage more in antitobacco educational campaigns that are framed negatively. The most popular campaign posts are those providing new information, with key phrases and topics discussing harmful chemicals and risks of secondhand smoke for pets. Educational campaign designers can use such insights to increase the reach of antismoking campaigns and promote behavioral changes. UR - https://www.jmir.org/2023/1/e42863 UR - http://dx.doi.org/10.2196/42863 UR - http://www.ncbi.nlm.nih.gov/pubmed/36780224 ID - info:doi/10.2196/42863 ER - TY - JOUR AU - Paquin, Vincent AU - Ferrari, Manuela AU - Sekhon, Harmehr AU - Rej, Soham PY - 2023/2/7 TI - Time to Think ?Meta?: A Critical Viewpoint on the Risks and Benefits of Virtual Worlds for Mental Health JO - JMIR Serious Games SP - e43388 VL - 11 KW - metaverse KW - digital media KW - virtual reality KW - mental health KW - addiction KW - social functioning KW - virtual KW - technology KW - augmented reality KW - gaming KW - social media KW - cognitive KW - physical activity KW - behavior KW - psychological KW - development KW - patient KW - policy UR - https://games.jmir.org/2023/1/e43388 UR - http://dx.doi.org/10.2196/43388 UR - http://www.ncbi.nlm.nih.gov/pubmed/36661284 ID - info:doi/10.2196/43388 ER - TY - JOUR AU - Sanger, Sally AU - Duffin, Suzanne AU - Gough, E. Rosemarie AU - Bath, A. Peter PY - 2023/2/7 TI - Use of Online Health Forums by People Living With Breast Cancer During the COVID-19 Pandemic: Thematic Analysis JO - JMIR Cancer SP - e42783 VL - 9 KW - online health forum KW - breast cancer KW - COVID-19 KW - pandemic KW - discussion forum KW - coronavirus KW - web-based communities KW - information use N2 - Background: At the time of the UK COVID-19 lockdowns, online health forums (OHFs) were one of the relatively few remaining accessible sources of peer support for people living with breast cancer. Cancer services were heavily affected by the pandemic in many ways, including the closure of many of the customary support services. Previous studies indicate that loneliness, anxiety, distress, and depression caused by COVID-19 were common among people living with breast cancer, and this suggests that the role of OHFs in providing users with support, information, and empathy could have been of increased importance at that time. Objective: This study aimed to examine how people living with breast cancer shared information, experiences, and emotions in an OHF during the COVID-19 pandemic. Methods: This qualitative study thematically analyzed posts from the discussion forums of an OHF provided by the UK charity, Breast Cancer Now. We selected 1053 posts from the time of 2 UK lockdowns: March 16, 2020, to June 15, 2020 (lockdown 1), and January 6, 2021, to March 8, 2021 (lockdown 3), for analysis, from 2 of the forum?s boards (for recently diagnosed people and for those undergoing chemotherapy). We analyzed the data using the original 6 steps for thematic analysis by Braun and Clarke but by following a codebook approach. Descriptive statistics for posts were also derived. Results: We found that COVID-19 amplified the forum?s value to its users. As patients with cancer, participants were in a situation that was ?bad enough already,? and the COVID-19 pandemic heightened this difficult situation. The forum?s value, which was already high for the information and peer support it provided, increased because COVID-19 caused some special information needs that forum users were uniquely well placed to fulfill as people experiencing the combined effects of having breast cancer during the pandemic. The forum also met the emotional needs generated by the COVID-19 pandemic and was valued as a place where loneliness during the pandemic may be relieved and users? spirits lifted in a variety of ways specific to this period. We found some differences in use between the 2 periods and the 2 boards?most noticeable was the great fear and anxiety expressed at the beginning of lockdown 1. Both the beginning and end of lockdown periods were particularly difficult for participants, with the ends seen as potentially increasing isolation. Conclusions: The forums were an important source of support and information to their users, with their value increasing during the lockdowns for a variety of reasons. Our findings will be helpful to organizations offering OHFs and to health care workers advising people living with breast cancer about sources of support. UR - https://cancer.jmir.org/2023/1/e42783 UR - http://dx.doi.org/10.2196/42783 UR - http://www.ncbi.nlm.nih.gov/pubmed/36473015 ID - info:doi/10.2196/42783 ER - TY - JOUR AU - Newman, Dunreath Susan AU - Toatley, Sherwood AU - Rodgers, Danielle Marka AU - Qanungo, Suparna AU - Mueller, Martina AU - Denny, Brian AU - Rodriguez, Angela PY - 2023/2/7 TI - Feasibility of a Community-Based, Online, Peer-Supported Spinal Cord Injury Self-management Intervention: Protocol for a Pilot Wait-Listed Randomized Trial JO - JMIR Res Protoc SP - e42688 VL - 12 KW - spinal cord injury KW - peer support KW - self-management KW - telehealth KW - community engaged research KW - community participation N2 - Background: People with spinal cord injury (SCI) report feeling unprepared to manage their disability upon discharge to the community. This situation is exacerbated when they return to settings where self-management support and resources are sparse, thus increasing the risk of costly secondary conditions and rehospitalizations. These factors make a compelling case for implementing innovative community-based SCI self-management programs that empower and engage individuals with SCI. Using a community-engaged research (CEnR) approach, we developed a peer-supported SCI self-management intervention, known as PHOENIX (Peer-supported Health Outreach, Education, and Information Exchange), which integrates online educational content and support from peer navigators (PNs) through telehealth, to promote health and community participation after SCI. Objective: The objective of this pilot study is to evaluate the feasibility and acceptability of PHOENIX and the study design, and to obtain estimates of the variability of relevant outcome measures. Methods: We conducted a pilot randomized waitlist-controlled trial (n=30) in collaboration with the South Carolina Spinal Cord Injury Association (SCSCIA), our long-standing community-based nonprofit organization research partner. We recruited 4 PNs through our SCSCIA collaboration using its existing network of trained peer mentors. Our study design supported comparison of the following 2 randomly assigned groups: PHOENIX intervention group and waitlist enhanced usual care (EUC) group. The PHOENIX intervention was administered online by PNs over 16 weeks through scheduled ?video visits.? The EUC group participated in the study for 16 weeks with usual community services and no navigation, and received 4 monthly newsletters from the SCSCIA on a variety of SCI-relevant topics. At the end of the waitlist period, the waitlist EUC group received the full PHOENIX intervention. Measures of feasibility included PN and participant recruitment and retention, PN workload, protocol adherence, and incidence of technical issues. We conducted qualitative interviews with participants and PNs to evaluate the acceptability of PHOENIX and the study design. Outcome measures, including community participation, quality of life, and the occurrence and subjective impact of medically serious secondary conditions and rehospitalizations, were assessed at baseline after randomization and at subsequent time points to allow between-group comparisons. Results: PN hiring and training were completed in August 2018. Recruitment began in November 2018. A total of 30 participants were recruited across South Carolina, and 28 participants completed follow-up by August 2020. An analysis of the results is being finalized, and the results are expected to be published in 2023. Conclusions: This study will provide valuable information to guide future research seeking to address unmet self-management needs and improve outcomes in individuals with SCI. Feasibility findings of this study will provide evidence from CEnR guided by people with SCI and SCI service providers to inform further development, testing, and dissemination of effective and scalable self-management strategies for people with SCI. International Registered Report Identifier (IRRID): RR1-10.2196/42688 UR - https://www.researchprotocols.org/2023/1/e42688 UR - http://dx.doi.org/10.2196/42688 UR - http://www.ncbi.nlm.nih.gov/pubmed/36749612 ID - info:doi/10.2196/42688 ER - TY - JOUR AU - Bizzotto, Nicole AU - Marciano, Laura AU - de Bruijn, Gert-Jan AU - Schulz, Johannes Peter PY - 2023/2/2 TI - The Empowering Role of Web-Based Help Seeking on Depressive Symptoms: Systematic Review and Meta-analysis JO - J Med Internet Res SP - e36964 VL - 25 KW - web-based help-seeking KW - support groups KW - depressive symptoms KW - internet KW - mental health KW - empowerment N2 - Background: Most research on web-based help seeking for mental health problems has focused on the antecedents of this behavior. Therefore, little is known about the outcomes of web-based help seeking in general or in specific mental health issues. Objective: This study was a systematic review and meta-analysis of the literature on the antecedents and consequences of web-based help-seeking behaviors for depressive symptoms. Methods: A systematic literature search was carried out in 6 scientific databases, leading to 48 studies (for a total of 314,921 participants) included in the qualitative synthesis and 19 included in the meta-analysis. Results: The results indicated a positive relationship between depressive symptoms and web-based help-seeking behaviors through online support groups (r=0.089; P=.009), and Generation Z (r=0.102; P=.008) tended to participate in support groups more than previous generations. In addition, web-based help seeking was positively related to empowerment (r=0.245; P=.004). Other forms of support reported included the internet and specific self-help tools, but no significant relationships were found with depressive symptoms. Conclusions: More studies examining the outcomes are needed, together with a more rigorous assessment of web-based help-seeking behaviors. Ultimately, we propose a summary framework for the literature on this topic, including the antecedents, patterns of use, and outcomes of web-based help seeking in the context of depressive symptoms. UR - https://www.jmir.org/2023/1/e36964 UR - http://dx.doi.org/10.2196/36964 UR - http://www.ncbi.nlm.nih.gov/pubmed/36729571 ID - info:doi/10.2196/36964 ER - TY - JOUR AU - Winstone, Lizzy AU - Mars, Becky AU - Ferrar, Jennifer AU - Moran, Paul AU - Penton-Voak, Ian AU - Grace, Lydia AU - Biddle, Lucy PY - 2023/1/31 TI - Investigating How People Who Self-harm Evaluate Web-Based Lived Experience Stories: Focus Group Study JO - JMIR Ment Health SP - e43840 VL - 10 KW - self-harm KW - lived experience stories KW - web-based support KW - self-help KW - recovery KW - focus groups N2 - Background: The positive and negative effects of interacting with web-based content on mental health, and especially self-harm, are well documented. Lived experience stories are one such type of static web-based content, frequently published on health care or third-sector organization websites, as well as social media and blogs, as a form of support for those seeking help via the web. Objective: This study aimed to increase understanding about how people who self-harm engage with and evaluate web-based lived experience stories. Methods: Overall, 4 web-based focus groups were conducted with 13 people with recent self-harm experience (aged 16-40 years). In total, 3 example lived experience stories were read aloud to participants, who were then asked to share their reactions to the stories. Participants were also encouraged to reflect on stories previously encountered on the web. Data were analyzed thematically. Results: Overall, 5 themes were generated: stories of recovery from self-harm and their emotional impact, impact on self-help and help-seeking behaviors, identifying with the narrator, authenticity, and language and stereotyping. Conclusions: Lived experience stories published on the web can provide a valuable form of support for those experiencing self-harm. They can be motivating and empowering for the reader, and they have the potential to distract readers from urges to self-harm. However, these effects may be moderated by age, and narratives of recovery may demoralize older readers. Our findings have implications for organizations publishing lived experience content and for community guidelines and moderators of web-based forums in which users share their stories. These include the need to consider the narrator?s age and the relatability and authenticity of their journey and the need to avoid using stigmatizing language. UR - https://mental.jmir.org/2023/1/e43840 UR - http://dx.doi.org/10.2196/43840 UR - http://www.ncbi.nlm.nih.gov/pubmed/36719729 ID - info:doi/10.2196/43840 ER - TY - JOUR AU - Dysthe, Kristoffer Kim AU - Røssberg, Ivar Jan AU - Brandtzaeg, Bae Petter AU - Skjuve, Marita AU - Haavet, Rikard Ole AU - Følstad, Asbjørn AU - Klovning, Atle PY - 2023/1/24 TI - Analyzing User-Generated Web-Based Posts of Adolescents? Emotional, Behavioral, and Symptom Responses to Beliefs About Depression: Qualitative Thematic Analysis JO - J Med Internet Res SP - e37289 VL - 25 KW - adolescent KW - depression KW - internet KW - education KW - preventive psychiatry KW - early medical intervention KW - health literacy KW - cognitive behavioral therapy N2 - Background: Depression is common during adolescence. Early intervention can prevent it from developing into more progressive mental disorders. Combining information technology and clinical psychoeducation is a promising way to intervene at an earlier stage. However, data-driven research on the cognitive response to health information targeting adolescents with symptoms of depression is lacking. Objective: This study aimed to fill this knowledge gap through a new understanding of adolescents? cognitive response to health information about depression. This knowledge can help to develop population-specific information technology, such as chatbots, in addition to clinical therapeutic tools for use in general practice. Methods: The data set consists of 1870 depression-related questions posted by adolescents on a public web-based information service. Most of the posts contain descriptions of events that lead to depression. On a sample of 100 posts, we conducted a qualitative thematic analysis based on cognitive behavioral theory investigating behavioral, emotional, and symptom responses to beliefs associated with depression. Results: Results were organized into four themes. (1) Hopelessness, appearing as a set of negative beliefs about the future, possibly results from erroneous beliefs about the causal link between risk factors and the course of depression. We found beliefs about establishing a sturdy therapy alliance as a responsibility resting on the patient. (2) Therapy hesitancy seemed to be associated with negative beliefs about therapy prognosis and doubts about confidentiality. (3) Social shame appeared as a consequence of impaired daily function when the cause is not acknowledged. (4) Failing to attain social interaction appeared to be associated with a negative symptom response. In contrast, actively obtaining social support reduces symptoms and suicidal thoughts. Conclusions: These results could be used to meet the clinical aims stated by earlier psychoeducation development, such as instilling hope through direct reattribution of beliefs about the future; challenging causal attributions, thereby lowering therapy hesitancy; reducing shame through the mechanisms of externalization by providing a tentative diagnosis despite the risk of stigmatizing; and providing initial symptom relief by giving advice on how to open up and reveal themselves to friends and family and balance the message of self-management to fit coping capabilities. An active counseling style advises the patient to approach the social environment, demonstrating an attitude toward self-action. UR - https://www.jmir.org/2023/1/e37289 UR - http://dx.doi.org/10.2196/37289 UR - http://www.ncbi.nlm.nih.gov/pubmed/36692944 ID - info:doi/10.2196/37289 ER - TY - JOUR AU - Guo, Shanshan AU - Dang, Yuanyuan AU - Vogel, Doug AU - She, Bofei PY - 2023/1/10 TI - The Effect of Offline Medical Resource Distribution on Online Physician-Patient Interaction: Empirical Study With Online and Offline Data JO - JMIR Form Res SP - e43533 VL - 7 KW - medical resources KW - online health community KW - physician-patient interaction KW - online and offline KW - social network analysis N2 - Background: The relationship between online health communities (OHCs) and offline medical care is unclear because both provide physician-patient interaction services and channels. Taking advantage of information and communication technology, patients have been using OHCs widely. However, some physical medical resources (such as hospital beds and medical devices) cannot be replicated by information and communication technologies. Therefore, it is worth studying how offline medical resources affect physician-patient interactions in OHCs and how OHCs help to solve resource scarcity and the uneven distribution of traditional medical treatment. Objective: This study aimed to support the notion that physician-patient consultations in OHCs are influenced by the objective distribution of offline health care capital (accessibility and availability) and to provide suggestions for the allocation of medical resources in practice through the judicious use of offline and online channels. Methods: The empirical data in this study were collected from both online and offline channels. The offline data include 9 years (2006-2014) of medical resource statistics of 31 provincial administrative regions in mainland China. Moreover, data regarding the geolocation-based physician-patient interaction network in the OHC were also collected. The online data come from one of China?s largest OHCs. We obtained 92,492 telephone consultation records of 6006 physicians using an automatic web crawler program. Social network analysis was used to visualize the descriptive statistics of the offline geolocation-based physician-patient interaction network in the OHC. A regression model with a squared variable was applied to analyze online and offline empirical data to further test our hypothesis. Two types of robustness tests were used to increase the reliability of the test results of the initial model. Results: The results of our social network analysis show that there is a uniform geographic distribution of patients who use OHCs, whereas the physician relies more on geographic advantage (eg, a higher medical resource capability). Moreover, the empirical results of the regression model support the notion that physician-patient telephone consultations are positively influenced by physicians? online contributions (?contribution=.210; P<.001) and capital availability (?bed=.935; P=.07), and, interestingly, spatial accessibility has an inverted U?shaped effect (?distance=.199; P<.001 and ?distance2=?.00449; P=.008). The results indicate that the use of OHCs, although constrained by offline medical resources, provides a channel for offline resources to flow from areas with high availability to those with low availability. Conclusions: This study explores the relationship between online and offline channels by investigating online physician-patient interactions and offline medical resources. In particular, this study analyzes the impact of offline channels on online channels and verifies the possibility of OHC capital use shifting from a high-availability area to a low-availability area. In addition, it provides a theoretical and practical basis for understanding the interaction of online and offline channels of medical care. UR - https://formative.jmir.org/2023/1/e43533 UR - http://dx.doi.org/10.2196/43533 UR - http://www.ncbi.nlm.nih.gov/pubmed/36626204 ID - info:doi/10.2196/43533 ER - TY - JOUR AU - Lu, Xinyi PY - 2023/1/9 TI - The Effects of Patient Health Information Seeking in Online Health Communities on Patient Compliance in China: Social Perspective JO - J Med Internet Res SP - e38848 VL - 25 KW - online health communities KW - OHCs KW - health information seeking KW - social presence KW - social support KW - perceived responsiveness N2 - Background: Online health communities (OHCs) can alleviate the uneven distribution and use of medical resources and severe hospital congestion. Patients may seek health information through OHCs before or after visiting physicians, which may affect their cognition, health literacy, decision-making preferences, and health-related behaviors such as compliance. Social factors (social support, social presence, and responsiveness) are closely related to patients? health information?seeking behavior and are significantly considered in OHCs. Objective: This study aimed to explore the effects of patients? health information?seeking behavior (way and effectiveness) on compliance with physicians from the perspectives of patients? perceived social support, social presence, and responsiveness. Methods: This study established a research model from the perspective of social information processing by using the social exchange theory. An anonymous questionnaire survey was conducted with several Chinese OHCs to collect data. Partial least squares and structural equation modeling were adopted to test the hypotheses and develop the model. Results: This study received 403 responses, of which 332 were valid, giving a validity rate of 82.4% (332/403). Among the sample, 78.6% (261/332) of the individuals were aged between 20 and 40 years, 59.3% (197/332) were woman, 69.9% (232/332) lived in urban areas, and 50% (166/332) had at least a bachelor?s degree. The reliability, convergent validity, and discriminant validity were acceptable. Both the way and effectiveness of patients seeking health information through OHCs have a positive impact on their compliance through the mediation of their perceived social support, social presence, and responsiveness from OHCs and other users, and patient compliance can be improved by guiding patient health information?seeking behavior in OHCs from a social perspective. Conclusions: This study proposes a research model to corroborate that patient health information?seeking behavior (way and effectiveness) in OHCs exerts positive effects on patient compliance with the treatment and physician?s advice and provides suggestions for patients, physicians, and OHC service providers in China to help guide patients? health-related behaviors through OHCs to improve patient compliance, patient satisfaction, treatment efficiency, and health outcomes. UR - https://www.jmir.org/2023/1/e38848 UR - http://dx.doi.org/10.2196/38848 UR - http://www.ncbi.nlm.nih.gov/pubmed/36622741 ID - info:doi/10.2196/38848 ER - TY - JOUR AU - Da Moura Semedo, Cidila AU - Bath, A. Peter AU - Zhang, Ziqi PY - 2023/1/6 TI - Social Support in a Diabetes Online Community: Mixed Methods Content Analysis JO - JMIR Diabetes SP - e41320 VL - 8 KW - diabetes online community KW - social support KW - health communication KW - mixed methods KW - content analysis KW - prediabetes KW - type 2 diabetes KW - type 2 diabetes insulin KW - type 2 diabetes remission N2 - Background: Patients with diabetes may experience different needs according to their diabetes stage. These needs may be met via online health communities in which individuals seek health-related information and exchange different types of social support. Understanding the social support categories that may be more important for different diabetes stages may help diabetes online communities (DOCs) provide more tailored support to web-based users. Objective: This study aimed to explore and quantify the categorical patterns of social support observed in a DOC, taking into consideration users? different diabetes stages, including prediabetes, type 2 diabetes (T2D), T2D with insulin treatment, and T2D remission. Methods: Data were collected from one of the largest DOCs in Europe: Diabetes.co.uk. Drawing on a mixed methods content analysis, a qualitative content analysis was conducted to explore what social support categories could be identified in users? posts. A total of 1841 posts were coded by 5 human annotators according to a modified version of the Social Support Behavior Code, including 7 different social support categories: achievement, congratulations, network support, seeking emotional support, seeking informational support, providing emotional support, and providing informational support. Subsequently, quantitative content analysis was conducted using chi-square post hoc analysis to compare the most prominent social support categories across different stages of diabetes. Results: Seeking informational support (605/1841, 32.86%) and providing informational support (597/1841, 32.42%) were the most frequent categories exchanged among users. The overall distribution of social support categories was significantly different across the diabetes stages (?218=287.2; P<.001). Users with prediabetes sought more informational support than those in other stages (P<.001), whereas there were no significant differences in categories posted by users with T2D (P>.001). Users with T2D under insulin treatment provided more informational and emotional support (P<.001), and users with T2D in remission exchanged more achievement (P<.001) and network support (P<.001) than those in other stages. Conclusions: This is the first study to highlight what, how, and when different types of social support may be beneficial at different stages of diabetes. Multiple stakeholders may benefit from these findings that may provide novel insights into how these categories can be strategically used and leveraged to support diabetes management. UR - https://diabetes.jmir.org/2023/1/e41320 UR - http://dx.doi.org/10.2196/41320 UR - http://www.ncbi.nlm.nih.gov/pubmed/36607714 ID - info:doi/10.2196/41320 ER - TY - JOUR AU - Szafran, Daria AU - Görig, Tatiana AU - Vollstädt-Klein, Sabine AU - Grundinger, Nadja AU - Mons, Ute AU - Lohner, Valerie AU - Schneider, Sven AU - Andreas, Marike PY - 2023/1/6 TI - Addictive Potential of e-Cigarettes as Reported in e-Cigarette Online Forums: Netnographic Analysis of Subjective Experiences JO - J Med Internet Res SP - e41669 VL - 25 KW - e-cigarette KW - addiction KW - netnographic analysis KW - smoking KW - tobacco KW - substance use KW - vaping N2 - Background: While e-cigarettes usually contain nicotine, their addictive potential is not yet fully understood. We hypothesized that if e-cigarettes are addictive, users will experience typical symptoms of addiction. Objective: The aim of our study was to investigate whether and how e-cigarette users report signs of addiction. Methods: We identified 3 large German-language e-cigarette online forums via a systematic Google search. Based on a netnographic approach, we used deductive content analysis to investigate relevant posts in these forums. Netnography has the advantage of limiting the social desirability bias that prevails in face-to-face research, such as focus groups. The data were coded according to the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) criteria for tobacco use disorder, adapted for e-cigarettes. The DSM-5 criteria were used to portray a broad spectrum of possible experiences of addiction. Results: Overall, 5337 threads in 3 forums were screened, and 451 threads containing relevant information were included in the analysis. Users reported experiences consistent with the DSM-5 criteria, such as craving e-cigarettes, excessive time spent vaping, and health issues related to e-cigarette use. However, our analysis also showed that users reported the absence of typical tobacco use disorder criteria, such as successful attempts to reduce the nicotine dosage. For most themes, reports of their absence were more frequent than of their presence. The absence of perceived addiction was mostly reported in contrast to prior tobacco smoking. Conclusions: This is the first study to use a netnographic approach to explore unfiltered self-reports of experiences of e-cigarette addiction by users in online forums. As hypothesized, some but not all users reported subjective experiences that corresponded to the criteria of tobacco use disorder as defined by the DSM-5. Nevertheless, subjective reports also indicated that many e-cigarette users felt in control of their behavior, especially in contrast to their prior use of tobacco cigarettes. The finding that some e-cigarette users subjectively experience addiction highlights the need for effective cessation programs to support users who experience their e-cigarette use as burdensome. This research can guide the refinement of instruments to assess e-cigarette addiction and guide cessation programs. International Registered Report Identifier (IRRID): RR2-10.1186/s40359-021-00682-8 UR - https://www.jmir.org/2023/1/e41669 UR - http://dx.doi.org/10.2196/41669 UR - http://www.ncbi.nlm.nih.gov/pubmed/36607713 ID - info:doi/10.2196/41669 ER - TY - JOUR AU - Adeane, Emily AU - Gibson, Kerry PY - 2023/1/4 TI - Using Web-Based Content to Connect Young People With Real-life Mental Health Support: Qualitative Interview Study JO - JMIR Form Res SP - e38296 VL - 7 KW - young people KW - mental health KW - online help seeking KW - internet KW - mental health services KW - digital interviews N2 - Background: Young people experience high rates of mental health problems but make insufficient use of the formal services available to them. As young people are heavy users of the internet, there may be an untapped potential to use web-based content to encourage this hard-to-reach population to make better use of face-to-face mental health services. However, owing to the vast range of content available and the complexities in how young people engage with it, it is difficult to know what web-based content is most likely to resonate with this age group and facilitate their engagement with professional support. Objective: This study aimed to identify the types of web-based content young people identified as more likely to prompt youth engagement with mental health services. Methods: This study used a qualitative design conducted within a social constructionist epistemology that recognized the importance of youth empowerment in mental health. Digital interviews using WhatsApp instant messenger were conducted with 37 young people aged 16-23 years who participated as ?expert informants? on the priorities and practices of youth in web-based spaces. The data were analyzed using reflexive thematic analysis to identify the types of web-based content that participants believed would encourage young people to reach out to a face-to-face mental health service for support. Results: The analysis generated 3 main themes related to the research question. First, participants noted that a lack of information about available services and how they worked prevented young people from engaging with face-to-face mental health services. They proposed web-based content that provided clear information about relevant mental health services and how to access them. They also suggested the use of both text and video to provide young people with greater insight into how face-to-face counseling might work. Second, participants recommended content dedicated to combating misconceptions about mental health and negative portrayals of mental health services and professionals that are prevalent in their web-based spaces. They suggested content that challenged the stigma surrounding mental health and help seeking and highlighted the value of mental health services. Finally, participants suggested that young people would be more likely to respond to ?relatable? digital stories of using mental health services, recounted in the context of a personal connection with someone they trusted. Conclusions: This study offers recommendations for professionals and service providers on how to better engage young people with real-life mental health support using web-based content. Web-based content can be used to challenge some of the barriers that continue to prevent young people from accessing face-to-face mental health services and underlines the importance of including young people?s voices in the design of web-based mental health content. UR - https://formative.jmir.org/2023/1/e38296 UR - http://dx.doi.org/10.2196/38296 UR - http://www.ncbi.nlm.nih.gov/pubmed/36598810 ID - info:doi/10.2196/38296 ER - TY - JOUR AU - Pollack, C. Catherine AU - Emond, A. Jennifer AU - O'Malley, James A. AU - Byrd, Anna AU - Green, Peter AU - Miller, E. Katherine AU - Vosoughi, Soroush AU - Gilbert-Diamond, Diane AU - Onega, Tracy PY - 2022/12/30 TI - Characterizing the Prevalence of Obesity Misinformation, Factual Content, Stigma, and Positivity on the Social Media Platform Reddit Between 2011 and 2019: Infodemiology Study JO - J Med Internet Res SP - e36729 VL - 24 IS - 12 KW - obesity KW - misinformation KW - social stigma KW - social media KW - Reddit KW - natural language processing N2 - Background: Reddit is a popular social media platform that has faced scrutiny for inflammatory language against those with obesity, yet there has been no comprehensive analysis of its obesity-related content. Objective: We aimed to quantify the presence of 4 types of obesity-related content on Reddit (misinformation, facts, stigma, and positivity) and identify psycholinguistic features that may be enriched within each one. Methods: All sentences (N=764,179) containing ?obese? or ?obesity? from top-level comments (n=689,447) made on non?age-restricted subreddits (ie, smaller communities within Reddit) between 2011 and 2019 that contained one of a series of keywords were evaluated. Four types of common natural language processing features were extracted: bigram term frequency?inverse document frequency, word embeddings derived from Bidirectional Encoder Representations from Transformers, sentiment from the Valence Aware Dictionary for Sentiment Reasoning, and psycholinguistic features from the Linguistic Inquiry and Word Count Program. These features were used to train an Extreme Gradient Boosting machine learning classifier to label each sentence as 1 of the 4 content categories or other. Two-part hurdle models for semicontinuous data (which use logistic regression to assess the odds of a 0 result and linear regression for continuous data) were used to evaluate whether select psycholinguistic features presented differently in misinformation (compared with facts) or stigma (compared with positivity). Results: After removing ambiguous sentences, 0.47% (3610/764,179) of the sentences were labeled as misinformation, 1.88% (14,366/764,179) were labeled as stigma, 1.94% (14,799/764,179) were labeled as positivity, and 8.93% (68,276/764,179) were labeled as facts. Each category had markers that distinguished it from other categories within the data as well as an external corpus. For example, misinformation had a higher average percent of negations (?=3.71, 95% CI 3.53-3.90; P<.001) but a lower average number of words >6 letters (?=?1.47, 95% CI ?1.85 to ?1.10; P<.001) relative to facts. Stigma had a higher proportion of swear words (?=1.83, 95% CI 1.62-2.04; P<.001) but a lower proportion of first-person singular pronouns (?=?5.30, 95% CI ?5.44 to ?5.16; P<.001) relative to positivity. Conclusions: There are distinct psycholinguistic properties between types of obesity-related content on Reddit that can be leveraged to rapidly identify deleterious content with minimal human intervention and provide insights into how the Reddit population perceives patients with obesity. Future work should assess whether these properties are shared across languages and other social media platforms. UR - https://www.jmir.org/2022/12/e36729 UR - http://dx.doi.org/10.2196/36729 UR - http://www.ncbi.nlm.nih.gov/pubmed/36583929 ID - info:doi/10.2196/36729 ER - TY - JOUR AU - Yabumoto, Megan AU - Miller, Emily AU - Rao, Anoushka AU - Tabor, K. Holly AU - Ormond, E. Kelly AU - Halley, C. Meghan PY - 2022/12/21 TI - Perspectives of Rare Disease Social Media Group Participants on Engaging With Genetic Counselors: Mixed Methods Study JO - J Med Internet Res SP - e42084 VL - 24 IS - 12 KW - social media KW - rare disease KW - genetic counseling KW - genetics KW - genomics KW - delivery of health care N2 - Background: Social media provides a potential avenue for genetic counselors to address gaps in access to reliable genetics information for rare disease communities. However, only limited research has examined patient and family attitudes toward engaging with genetic counselors through social media. Objective: Our study assessed the attitudes of members of rare disease social media groups toward engaging with genetic counselors through social media, characteristics associated with greater interest, and the benefits and potential pitfalls of various approaches to such engagement. Methods: We conducted a mixed methods survey of patients and family members recruited from a systematic sample of rare disease Facebook groups. Patient characteristics and their associations with interest in engagement with genetic counselors were evaluated using univariate and bivariate statistics. Responses to open-ended questions were analyzed using thematic content analysis. Results: In total, 1053 individuals from 103 rare disease groups participated. The median overall interest in engaging with genetic counselors on social media was moderately high at 7.0 (IQR 4.0-9.0, range 0-10). No past experience with a genetic counselor was associated with greater interest in engaging with one through social media (µ=6.5 vs 6.0, P=.04). Participants expressed greatest interest (median 9.0, IQR 5.0-10.0) in engagement models allowing direct communication with genetic counselors, which was corroborated by the majority (n=399, 61.3%) of individuals who responded to open-ended questions explicitly stating their interest in 1-on-1 interactions. When asked what forms of support they would request from genetic counselors through social media, participants desired individualized support and information about how to access services. However, participants also expressed concerns regarding privacy and confidentiality. Conclusions: Patients and family members in rare disease social media groups appear interested in engaging with genetic counselors through social media, particularly for individualized support. This form of engagement on social media is not meant to replace the current structure and content of genetic counseling (GC) services, but genetic counselors could more actively use social media as a communication tool to address gaps in knowledge and awareness about genetics services and gaps in accessible patient information. Although encouraging, concerns regarding privacy and feasibility require further consideration, pointing to the need for professional guidelines in this area. UR - https://www.jmir.org/2022/12/e42084 UR - http://dx.doi.org/10.2196/42084 UR - http://www.ncbi.nlm.nih.gov/pubmed/36542454 ID - info:doi/10.2196/42084 ER - TY - JOUR AU - Dirkson, Anne AU - den Hollander, Dide AU - Verberne, Suzan AU - Desar, Ingrid AU - Husson, Olga AU - van der Graaf, A. Winette T. AU - Oosten, Astrid AU - Reyners, L. Anna K. AU - Steeghs, Neeltje AU - van Loon, Wouter AU - van Oortmerssen, Gerard AU - Gelderblom, Hans AU - Kraaij, Wessel PY - 2022/12/15 TI - Sample Bias in Web-Based Patient-Generated Health Data of Dutch Patients With Gastrointestinal Stromal Tumor: Survey Study JO - JMIR Form Res SP - e36755 VL - 6 IS - 12 KW - social media KW - patient forum KW - sample bias KW - representativeness KW - pharmacovigilance KW - rare cancer N2 - Background: Increasingly, social media is being recognized as a potential resource for patient-generated health data, for example, for pharmacovigilance. Although the representativeness of the web-based patient population is often noted as a concern, studies in this field are limited. Objective: This study aimed to investigate the sample bias of patient-centered social media in Dutch patients with gastrointestinal stromal tumor (GIST). Methods: A population-based survey was conducted in the Netherlands among 328 patients with GIST diagnosed 2-13 years ago to investigate their digital communication use with fellow patients. A logistic regression analysis was used to analyze clinical and demographic differences between forum users and nonusers. Results: Overall, 17.9% (59/328) of survey respondents reported having contact with fellow patients via social media. Moreover, 78% (46/59) of forum users made use of GIST patient forums. We found no statistically significant differences for age, sex, socioeconomic status, and time since diagnosis between forum users (n=46) and nonusers (n=273). Patient forum users did differ significantly in (self-reported) treatment phase from nonusers (P=.001). Of the 46 forum users, only 2 (4%) were cured and not being monitored; 3 (7%) were on adjuvant, curative treatment; 19 (41%) were being monitored after adjuvant treatment; and 22 (48%) were on palliative treatment. In contrast, of the 273 patients who did not use disease-specific forums to communicate with fellow patients, 56 (20.5%) were cured and not being monitored, 31 (11.3%) were on curative treatment, 139 (50.9%) were being monitored after treatment, and 42 (15.3%) were on palliative treatment. The odds of being on a patient forum were 2.8 times as high for a patient who is being monitored compared with a patient that is considered cured. The odds of being on a patient forum were 1.9 times as high for patients who were on curative (adjuvant) treatment and 10 times as high for patients who were in the palliative phase compared with patients who were considered cured. Forum users also reported a lower level of social functioning (84.8 out of 100) than nonusers (93.8 out of 100; P=.008). Conclusions: Forum users showed no particular bias on the most important demographic variables of age, sex, socioeconomic status, and time since diagnosis. This may reflect the narrowing digital divide. Overrepresentation and underrepresentation of patients with GIST in different treatment phases on social media should be taken into account when sourcing patient forums for patient-generated health data. A further investigation of the sample bias in other web-based patient populations is warranted. UR - https://formative.jmir.org/2022/12/e36755 UR - http://dx.doi.org/10.2196/36755 UR - http://www.ncbi.nlm.nih.gov/pubmed/36520526 ID - info:doi/10.2196/36755 ER - TY - JOUR AU - Wu, Dezhi AU - Kasson, Erin AU - Singh, Kumar Avineet AU - Ren, Yang AU - Kaiser, Nina AU - Huang, Ming AU - Cavazos-Rehg, A. Patricia PY - 2022/12/13 TI - Topics and Sentiment Surrounding Vaping on Twitter and Reddit During the 2019 e-Cigarette and Vaping Use?Associated Lung Injury Outbreak: Comparative Study JO - J Med Internet Res SP - e39460 VL - 24 IS - 12 KW - vaping KW - e-cigarette KW - social media KW - Twitter KW - Reddit KW - e-cigarette and vaping use?associated lung injury KW - EVALI KW - sentiment analysis KW - topic analysis N2 - Background: Vaping or e-cigarette use has become dramatically more popular in the United States in recent years. e-Cigarette and vaping use?associated lung injury (EVALI) cases caused an increase in hospitalizations and deaths in 2019, and many instances were later linked to unregulated products. Previous literature has leveraged social media data for surveillance of health topics. Individuals are willing to share mental health experiences and other personal stories on social media platforms where they feel a sense of community, reduced stigma, and empowerment. Objective: This study aimed to compare vaping-related content on 2 popular social media platforms (ie, Twitter and Reddit) to explore the context surrounding vaping during the 2019 EVALI outbreak and to support the feasibility of using data from both social platforms to develop in-depth and intelligent vaping detection models on social media. Methods: Data were extracted from both Twitter (316,620 tweets) and Reddit (17,320 posts) from July 2019 to September 2019 at the peak of the EVALI crisis. High-throughput computational analyses (sentiment analysis and topic analysis) were conducted. In addition, in-depth manual content analyses were performed and compared with computational analyses of content on both platforms (577 tweets and 613 posts). Results: Vaping-related posts and unique users on Twitter and Reddit increased from July 2019 to September 2019, with the average post per user increasing from 1.68 to 1.81 on Twitter and 1.19 to 1.21 on Reddit. Computational analyses found the number of positive sentiment posts to be higher on Reddit (P<.001, 95% CI 0.4305-0.4475) and the number of negative posts to be higher on Twitter (P<.001, 95% CI ?0.4289 to ?0.4111). These results were consistent with the clinical content analyses results indicating that negative sentiment posts were higher on Twitter (273/577, 47.3%) than Reddit (184/613, 30%). Furthermore, topics prevalent on both platforms by keywords and based on manual post reviews included mentions of youth, marketing or regulation, marijuana, and interest in quitting. Conclusions: Post content and trending topics overlapped on both Twitter and Reddit during the EVALI period in 2019. However, crucial differences in user type and content keywords were also found, including more frequent mentions of health-related keywords on Twitter and more negative health outcomes from vaping mentioned on both Reddit and Twitter. Use of both computational and clinical content analyses is critical to not only identify signals of public health trends among vaping-related social media content but also to provide context for vaping risks and behaviors. By leveraging the strengths of both Twitter and Reddit as publicly available data sources, this research may provide technical and clinical insights to inform automatic detection of social media users who are vaping and may benefit from digital intervention and proactive outreach strategies on these platforms. UR - https://www.jmir.org/2022/12/e39460 UR - http://dx.doi.org/10.2196/39460 UR - http://www.ncbi.nlm.nih.gov/pubmed/36512403 ID - info:doi/10.2196/39460 ER - TY - JOUR AU - Basch, H. Corey AU - Hillyer, C. Grace AU - Yalamanchili, Bhavya AU - Morris, Aldean PY - 2022/12/6 TI - How TikTok Is Being Used to Help Individuals Cope With Breast Cancer: Cross-sectional Content Analysis JO - JMIR Cancer SP - e42245 VL - 8 IS - 4 KW - TikTok KW - breast cancer KW - social media KW - short video apps KW - social support KW - content analysis KW - video KW - patient support KW - medical information KW - health information KW - peer support KW - online conversation KW - online health information N2 - Background: Acknowledging the popularity of TikTok, how quickly medical information can spread, and how users seek support on social media, there is a clear lack of research on breast cancer conversations on TikTok. There is a paucity of information on how these videos can advocate for those impacted by breast cancer as a means to provide support and information as well as raise awareness. Objective: The purpose of this cross-sectional content analysis was to describe the content of videos from the hashtag #breastcancer on TikTok. Content related to breast cancer support and coping, cancer education, and heightening the awareness of breast cancer early detection, prevention, and treatment was evaluated. Methods: This study included 100 of the most viewed TikTok videos related to breast cancer through June 30, 2022. Videos were excluded if they were not in the English language or relevant to the topic being studied. Content was deductively coded into categories related to video characteristics and content topics using a screener based on expert breast cancer information sheets. Univariable analyses were conducted to evaluate differences in video characteristics and content when stratified as advocating or not advocating for breast cancer (yes or no) support, education, and awareness. Results: The cumulative number of views of the videos included in this study was 369,504,590. The majority (n=81, 81%) of videos were created by patients and loved ones of individuals with breast cancer, and the most commonly discussed topic was breast cancer support (n=88, 88%), followed by coping with the myriad issues surrounding breast cancer (n=79, 79%). Overall, <50% of the videos addressed important issues such as body image (n=48, 48%), surgery (n=46, 46%), medication and therapy (n=41, 41%), or the stigma associated with a breast cancer diagnosis (n=44, 44%); however, in videos that were advocacy oriented, body image (40/62, 64% vs 8/38, 21%; P<.001), stigma associated with breast cancer (33/62, 53% vs 11/38, 29%; P=.02), and breast cancer surgery (36/62, 58% vs 10/38, 26%; P=.002) were discussed significantly more often than in videos that did not specifically advocate for breast cancer. Conclusions: The use of videos to display health journeys can facilitate engagement by patients, family members, and loved ones interested in information about challenging conditions. Collectively, these findings highlight the level of peer-to-peer involvement on TikTok and may provide insights for designing breast cancer educational campaigns. UR - https://cancer.jmir.org/2022/4/e42245 UR - http://dx.doi.org/10.2196/42245 UR - http://www.ncbi.nlm.nih.gov/pubmed/36472899 ID - info:doi/10.2196/42245 ER - TY - JOUR AU - Galimov, Artur AU - Vassey, Julia AU - Galstyan, Ellen AU - Unger, B. Jennifer AU - Kirkpatrick, G. Matthew AU - Allem, Jon-Patrick PY - 2022/11/30 TI - Ice Flavor?Related Discussions on Twitter: Content Analysis JO - J Med Internet Res SP - e41785 VL - 24 IS - 11 KW - electronic cigarettes KW - Twitter KW - social media KW - ice flavors KW - tobacco policy KW - public health KW - infodemiology KW - FDA KW - tobacco KW - smoking KW - vaping KW - e-cigarette KW - public N2 - Background: The US Food and Drug Administration (FDA) recently restricted characterizing flavors in tobacco products. As a result, ice hybrid?flavored e-cigarettes, which combine a cooling flavor with fruit or other flavors (eg, banana ice), emerged on the market. Like menthol, ice-flavored e-cigarettes produce a cooling sensory experience. It is unclear if ice hybrid?flavored e-cigarettes should be considered characterizing flavors or menthol, limiting regulatory action. Monitoring the public?s conversations about ice-flavored e-cigarettes on Twitter may help inform the tobacco control community about these products and contribute to the US FDA policy targets in the future. Objective: This study documented the themes pertaining to vaping and ice flavor?related conversations on Twitter. Our goal was to identify key conversation trends and ascertain users? recent experiences with ice-flavored e-cigarette products. Methods: Posts containing vaping-related (eg, ?vape,? ?ecig,? ?e-juice,? or ?e-cigarette?) and ice-related (ie, ?Ice,? ?Cool,? ?Frost,? and ?Arctic?) terms were collected from Twitter?s streaming application programming interface from January 1 to July 21, 2021. After removing retweets, a random sample of posts (N=2001) was selected, with 590 posts included in the content analysis. Themes were developed through an inductive approach. Theme co-occurrence was also examined. Results: Many of the 590 posts were marked as (or consisted of) marketing material (n=306, 51.9%), contained positive personal testimonials (n=180, 30.5%), and mentioned disposable pods (n=117, 19.8%). Other themes had relatively low prevalence in the sample: neutral personal testimonials (n=45, 7.6%), cannabidiol products (n=41, 7%), negative personal testimonials (n=41, 7%), ?official? flavor description (n=37, 6.3%), ice-flavored JUUL (n=19, 3.2%), information seeking (n=14, 2.4%), and comparison to combustible tobacco (n=10, 1.7%). The most common co-occurring themes in a single tweet were related to marketing and disposable pods (n=73, 12.4%). Conclusions: Our findings offer insight into the public?s experience with and understanding of ice-flavored e-cigarette products. Ice-flavored e-cigarette products are actively marketed on Twitter, and the messages about them are positive. Public health education campaigns on the harms of flavored e-cigarettes may help to reduce positive social norms about ice-flavored products. Future studies should evaluate the relationship between exposure to personal testimonials of ice-flavored vaping products and curiosity, harm perceptions, and experimentation with these products among priority populations. UR - https://www.jmir.org/2022/11/e41785 UR - http://dx.doi.org/10.2196/41785 UR - http://www.ncbi.nlm.nih.gov/pubmed/36449326 ID - info:doi/10.2196/41785 ER - TY - JOUR AU - Gao, Yajing AU - Chen, Xuemei AU - Zhang, Wei AU - Wang, Qiuyi AU - Liu, Jing AU - Zhou, Lanshou PY - 2022/11/29 TI - Online Ethnography for People With Chronic Conditions: Scoping Review JO - J Med Internet Res SP - e37941 VL - 24 IS - 11 KW - online ethnography KW - chronic condition KW - scoping review KW - review KW - ethnography KW - online KW - research KW - online users N2 - Background: Online ethnography has been making a unique contribution to people with chronic conditions as a complement to offline ethnography. It can also be used to study the complexities and contingencies of people with chronic conditions in the context of the internet. Therefore, there is a need to synthesize existing knowledge on research activities concerning online ethnography for people with chronic conditions. Objective: This scoping review aimed to profile the existing evidence on the application of online ethnography for people with chronic conditions, focusing on the characteristics, contributions, and implementation process. This will provide recommendations for the future use of online ethnography. Methods: We followed the scoping review methodologies developed by Arksey and O? Malley and the Joanna Briggs Institute. A comprehensive search was conducted on the PubMed, CINAHL, Embase, Scopus, and PsycInfo databases using preselected keywords. The search was limited to documents written in English and published between January 1, 2000, and February 1, 2022. After removal of duplicates, articles were screened by 2 independent reviewers reading the title, abstract, and full text. One reviewer extracted data, which were descriptively analyzed to map the existing knowledge. Results: After 2836 titles and abstracts and 51 full texts were screened, 27 publications were included in the analysis, published between 2009 and 2022. Most studies were from the United States (11/27, 40.7%), and most articles collected data from online forums (10/27, 37.0%). Moreover, the most commonly used type of researcher involvement was passive analysis (24/27, 88.9%), and 18.5% (5/27) of the topics concerned people with mental illness. Notably, the majority of articles did not report the immersion process in detail (17/25, 63.0%). Ethical issues were mentioned in 88.9% (24/27) of the included articles. Conclusions: We analyzed the current literature across fields and found that online ethnography can be exploited to explore the deeper experience of people with chronic conditions that are difficult to investigate using traditional ethnography. We found that there was diversity in researcher involvement, immersion process, data collection, and data analysis. However, most studies reported the insufficient immersion into the online environment. Researchers should determine the research approaches and data resources in order to complete culture immersion before researching. We also found that there was no uniform standard for ethical issues. Therefore, we recommend that researchers collect public and private data, obtain informed consent, and preserve the privacy and confidentiality of online users with chronic conditions. The findings can provide a practical reference for the use of online health care in studying chronic conditions. UR - https://www.jmir.org/2022/11/e37941 UR - http://dx.doi.org/10.2196/37941 UR - http://www.ncbi.nlm.nih.gov/pubmed/36445746 ID - info:doi/10.2196/37941 ER - TY - JOUR AU - Smit, Dorien AU - Vrijsen, N. Janna AU - Broekman, Theo AU - Groeneweg, Bart AU - Spijker, Jan PY - 2022/11/2 TI - User Engagement Within an Online Peer Support Community (Depression Connect) and Recovery-Related Changes in Empowerment: Longitudinal User Survey JO - JMIR Form Res SP - e39912 VL - 6 IS - 11 KW - depression KW - online peer support community KW - internet support group KW - experiential knowledge KW - self-management KW - empowerment KW - user engagement KW - longitudinal user survey N2 - Background: The chronic nature of depression and limited availability of evidence-based treatments emphasize the need for complementary recovery-oriented services, such as peer support interventions (PSIs). Peer support is associated with positive effects on clinical and personal recovery from mental illness, but little is known about the processes of engagement that foster change, and studies targeting individuals with depression specifically are limited. Objective: This study aimed to evaluate whether the level of user engagement, assessed on several dimensions, in an online peer support community for individuals with depression promotes empowerment and the use of self-management strategies and reduces symptom severity and disability. Methods: In a longitudinal survey conducted from June 2019 to September 2020, we analyzed the data of the users of Depression Connect (DC), an online peer support community hosted by the Dutch Patient Association for Depression and the Pro Persona Mental Health Care institute, on measures of empowerment, self-management, depression, and disability. Of the 301 respondents, 49 (16.3%) respondents completed the survey again after 3 months and 74 (24.6%) respondents, after 6 months. Analysis of 3 parameters (ie, total time spent on the platform, number of page views, and number of posts) derived from their data logs yielded 4 engagement profiles. Linear mixed models were fitted to determine whether the outcomes had significantly changed over time and differed for the various profiles. Results: Baseline engagement with the online peer support community was ?very low? (177/301, 58.8%) or ?low? (87/301, 28.9%) for most of the participants, with few showing ?medium? (30/301, 9.9%) or ?high? engagement patterns (7/301, 2.3%), while user profiles did not differ in demographic and clinical characteristics. Empowerment, self-management, depressive symptoms, and disability improved over time, but none were associated with the intensity or nature of user engagement. Conclusions: With most DC members showing very low to low engagement and only a few being identified as high-engaged users, it is likely that this flexibility in use frequency is what provides value to online PSI users. In other more formal supportive environments for depression, a certain level of engagement is predetermined either by their organizational or by their societal context; at DC, users can adapt the intensity and nature of their engagement to their current needs on their personal road to recovery. This study added to the current knowledge base on user engagement for PSIs because previous studies targeting depression with an online format focused on active users, precluding passive and flexible engagement. Future studies should explore the content and quality of the interactions in online PSIs to identify optimal user engagement as a function of current, self-reported clinical parameters and reasons to engage in the PSI. UR - https://formative.jmir.org/2022/11/e39912 UR - http://dx.doi.org/10.2196/39912 UR - http://www.ncbi.nlm.nih.gov/pubmed/36322110 ID - info:doi/10.2196/39912 ER - TY - JOUR AU - Jones, Steven AU - Atanasova, Dimitrinka AU - Dodd, Susanna AU - Flowers, Susan AU - Rosala-Hallas, Anna AU - Robinson, Heather AU - Semino, Elena AU - Lobban, Fiona PY - 2022/10/20 TI - Use of an Online Forum for Relatives of People With Psychosis and Bipolar Disorder: Mixed Methods Study JO - JMIR Ment Health SP - e35837 VL - 9 IS - 10 KW - psychosis KW - bipolar disorder KW - relative KW - carer KW - mental health KW - forum KW - online KW - digital health KW - Relatives Education and Coping Toolkit KW - REACT KW - trial N2 - Background: Relatives of people with psychosis or bipolar disorder experience high levels of distress but are typically not offered the support they need. Online peer forums may offer a solution, but knowledge about who uses them, how, and why is limited. This study reported on online forum use during the Relatives Education and Coping Toolkit (REACT) trial. Objective: We aimed to report who used the forum and why; how sociodemographic factors are associated with participation; the relationship among frequency, type of use, and outcomes; and how the forum was used. Methods: The relationships between key sociodemographic characteristics, levels of forum use, and distress were statistically analyzed. We used thematic and semantic analyses to understand the reasons for relatives joining the forum and the key topics initiated by them. We also used the University Centre for Computer Corpus Research on Language Semantic Analysis System to compare how relatives and REACT supporters (moderators) used the forum. Results: A total of 348 participants with full forum use data from REACT were included in this study. The forum was accessed by 59.4% (207/348) of the relatives across the entire age range, with no significant associations between sociodemographic factors and forum participation, or between level or type of use and relatives? distress levels. Relatives joined the forum primarily to find people in similar circumstances, express concerns, and talk about stressful events. Relatives were most concerned about recent events, negative emotions linked to caring, experiences of conflict or threat, and concerns about suicide. These posts underscored both the challenges the relatives were facing and the fact that they felt safe sharing them in this context. Conclusions: Although only a proportion of REACT participants engaged actively with its forum, they were widely distributed across age and other sociodemographic groupings. Relatives used the forum for information, support, and guidance and to offer detailed information about their experiences. The topics raised highlighted the burden carried by relatives and the potential value of easy-access, moderated, peer-supported forums in helping relatives to manage the challenges they faced. UR - https://mental.jmir.org/2022/10/e35837 UR - http://dx.doi.org/10.2196/35837 UR - http://www.ncbi.nlm.nih.gov/pubmed/36264621 ID - info:doi/10.2196/35837 ER - TY - JOUR AU - Chen, Shiqi Sikky AU - Lam, Pong Tai AU - Lam, Fai Kwok AU - Lo, Lam Tak AU - Chao, Kiong David Vai AU - Mak, Yan Ki AU - Lam, Wo Edmund Wing AU - Tang, Sin Wai AU - Chan, Yan Hoi AU - Yip, Fai Paul Siu PY - 2022/10/12 TI - The Use of Close Friends on Instagram, Help-Seeking Willingness, and Suicidality Among Hong Kong Youth: Exploratory Sequential Mixed Methods Study JO - J Med Internet Res SP - e37695 VL - 24 IS - 10 KW - Close Friends KW - private online expression KW - help-seeking willingness KW - suicide KW - youth N2 - Background: Social networking sites (SNSs) have gained popularity in recent years for help seeking and self-distress expression among adolescents. Although online suicidal expression is believed to have major benefits, various concerns have also been raised, particularly around privacy issues. Understanding youths? help-seeking behavior on SNSs is critical for effective suicide prevention; however, most research neglects the impacts of the private SNS context. Objective: This study aims to examine youths? private SNS use via the new Instagram feature, Close Friends, and its association with both online and offline help-seeking willingness as well as youths? suicidality. Methods: This study employed an exploratory sequential mixed methods approach with a combination of explorative qualitative interviews and a systematic quantitative survey, targeting youth aged 15-19 years in Hong Kong. The motivations for utilizing Close Friends and concerns regarding online expression were addressed in the focus group and individual interviews (n=40). A cross-sectional survey (n=1676) was conducted subsequently with eligible secondary school students to examine the prevalence of Close Friends usage, their online and offline help-seeking willingness, and suicide-related experiences. Results: A total of 3 primary motives for using Close Friends were identified during interviews, including (1) interaction and help seeking, (2) release of negative emotions, and (3) ventilation and self-expression. Most participants also highlighted the privacy concerns associated with public online communication and the importance of contacting close friends for emotional support. Survey results showed that use of Close Friends was quite prevalent among adolescents (1163/1646, 70.66%), with around 46% (754/1646, 45.81%) of respondents being frequent users. Differences by gender and school academic banding were also revealed. Regarding help-seeking intentions, youths were generally positive about seeking help from peers and friends offline (1010/1266, 79.78%) yet negative about seeking assistance from online friends or professionals with whom they had not yet developed a real-world connection (173/1266, 13.67%). Most notably, frequencies of Close Friends usage were differentially associated with online and offline help-seeking willingness and youths? suicidality. Compared with nonusers, those who had ever used the feature were more likely to seek offline support (adjusted odds ratios [AORs] 1.82-2.36), whereas heavy use of Close Friends was associated with increased odds of online help-seeking willingness (AOR?1.76, 95% CI 1.06-2.93) and a higher risk of suicidality (AOR?1.53, 95% CI 1.01-2.31). Conclusions: The popularity of Close Friends reflects the increasing need for private online expression among youth. This study demonstrates the importance of Close Friends for self-expression and private conversation and inadequacy of peer support for suicidal adolescents. Further research is needed to identify the causal relationship between Close Friends usage and help-seeking willingness to guide the advancement of suicide prevention strategies. Researchers and social media platforms may cooperate to co-design a risk monitoring system tailored to the private SNS context, assisting professionals in identifying youth at risk of suicide. UR - https://www.jmir.org/2022/10/e37695 UR - http://dx.doi.org/10.2196/37695 UR - http://www.ncbi.nlm.nih.gov/pubmed/36223182 ID - info:doi/10.2196/37695 ER - TY - JOUR AU - Allen-Taylor, Maya AU - Ryan, Laura AU - Winkley, Kirsty AU - Upsher, Rebecca PY - 2022/10/5 TI - Exploring the Experiences and Perspectives of Insulin Therapy in Type 2 Diabetes via Web-Based UK Diabetes Health Forums: Qualitative Thematic Analysis of Threads JO - JMIR Diabetes SP - e34650 VL - 7 IS - 4 KW - type 2 diabetes KW - adults KW - qualitative KW - insulin KW - internet KW - web-based N2 - Background: Despite the advent of type 2 diabetes (T2D) remission strategies and novel therapeutic agents, many individuals with T2D will require insulin treatment to achieve target glycemia, with the aim of preventing or delaying diabetes complications. However, insulin refusal and cessation of treatment in this group are common, and their needs are underreported and relatively unexplored. Objective: This study aimed to explore the experiences and perspectives of individuals with T2D for whom insulin therapy is indicated as expressed on web-based health forums, in order to inform the development of evidence-based structured educational and support strategies and improve health care provider awareness. Methods: Retrospective archived forum threads from the 2 largest, freely and publicly accessible diabetes health forums in the United Kingdom were screened over a 12-month period (August 2019-2020). The Diabetes UK and Diabetes.co.uk forums were searched for relevant threads. A total of 3 independent researchers analyzed the forum threads and posts via thematic analysis. Pertinent themes were identified and illustrated by paraphrasing members? quotes to ensure anonymity. A total of 299 posts from 29 threads from Diabetes UK and 295 posts from 28 threads Diabetes.co.uk were analyzed over the study period. In all, 57 threads met the inclusion criteria and were included in the final analysis. Results: Four overarching themes were generated to illustrate the unmet needs that prompted members to seek information, advice, and support regarding insulin therapy outside of their usual care provision via the forums: empowerment through sharing self-management strategies, seeking and providing extended lifestyle advice, relationships with health care professionals, and a source of psychological peer support. Conclusions: This is the first study to collect data from web-based health forums to characterize the experiences and perspectives of people with T2D for whom insulin therapy is indicated. The observed naturalistic conversations have generated useful insights; our findings suggest that there are significant unmet self-management and psychological needs within this group that are not being met elsewhere, prompting the seeking of information and support on the web. These include practical aspects such as insulin injection technique, storage and dose titration, driving and travel considerations, the emerging use of technology, and a strong interest in the effects of extended lifestyle (diet and activity) approaches to support insulin therapy. In addition, problematic relationships with health care professionals appear to be a barrier to effective insulin therapy for some. In contrast, seeking and offering mutually beneficial, practical, and psychological support from peers was viewed as enabling. The study results will help to directly inform insulin-focused self-management and support strategies to enable individuals in this group to achieve their best outcomes. UR - https://diabetes.jmir.org/2022/4/e34650 UR - http://dx.doi.org/10.2196/34650 UR - http://www.ncbi.nlm.nih.gov/pubmed/36197724 ID - info:doi/10.2196/34650 ER - TY - JOUR AU - Soós, Judit Mercédesz AU - Coulson, S. Neil AU - Davies, Bethan E. PY - 2022/10/4 TI - Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings JO - J Med Internet Res SP - e34403 VL - 24 IS - 10 KW - Tourette syndrome KW - tic disorders KW - social support KW - online support communities KW - online health communities KW - thematic analysis KW - online support KW - peer support KW - support group KW - Tourette KW - online health community N2 - Background: Online support communities have become an accessible way of gaining social, emotional, and informational support from peers and may be particularly useful for individuals with chronic conditions. To date, there have been few studies exploring the online support available for tic disorders, such as Tourette syndrome. An exploratory study looking at users? experiences with using online support communities for tic disorders suggested that members used such communities to share experiences, information, and strategies for tic management. Objective: To build on these preliminary findings, this study examined the provision of social support in an online community for Tourette syndrome. Methods: Data were collected from one publicly available online support community for Tourette syndrome and tics, from its inception to December 2019, by randomly selecting 10% of posts and their corresponding comments from each year for analysis. This resulted in 510 unique posts and 3802 comments posted from 1270 unique usernames. The data were analyzed using inductive thematic analysis. Results: The findings of this study suggest that users utilized the online community as a multifaceted virtual place where they could share and ask for information about tics, unload and share their feelings arising from living with Tourette syndrome, find people facing similar situations and experiences, and freely share the realities of living with Tourette syndrome. Conclusions: The results complement the findings from a preliminary study and suggest that online support communities have a potentially valuable role as a mechanism for sharing and gaining information on illness experiences from similar peers experiencing tics and can promote self-management of tics. Limitations and recommendations for future research are discussed. UR - https://www.jmir.org/2022/10/e34403 UR - http://dx.doi.org/10.2196/34403 UR - http://www.ncbi.nlm.nih.gov/pubmed/36194454 ID - info:doi/10.2196/34403 ER - TY - JOUR AU - Kang, Yong-Bin AU - McCosker, Anthony AU - Kamstra, Peter AU - Farmer, Jane PY - 2022/9/22 TI - Resilience in Web-Based Mental Health Communities: Building a Resilience Dictionary With Semiautomatic Text Analysis JO - JMIR Form Res SP - e39013 VL - 6 IS - 9 KW - resilience dictionary KW - mental health KW - peer-support forum KW - topic modeling KW - text analysis KW - content moderation N2 - Background: Resilience is an accepted strengths-based concept that responds to change, adversity, and crises. This concept underpins both personal and community-based preventive approaches to mental health issues and shapes digital interventions. Online mental health peer-support forums have played a prominent role in enhancing resilience by providing accessible places for sharing lived experiences of mental issues and finding support. However, little research has been conducted on whether and how resilience is realized, hindering service providers? ability to optimize resilience outcomes. Objective: This study aimed to create a resilience dictionary that reflects the characteristics and realization of resilience within online mental health peer-support forums. The findings can be used to guide further analysis and improve resilience outcomes in mental health forums through targeted moderation and management. Methods: A semiautomatic approach to creating a resilience dictionary was proposed using topic modeling and qualitative content analysis. We present a systematic 4-phase analysis pipeline that preprocesses raw forum posts, discovers core themes, conceptualizes resilience indicators, and generates a resilience dictionary. Our approach was applied to a mental health forum run by SANE (Schizophrenia: A National Emergency) Australia, with 70,179 forum posts between 2018 and 2020 by 2357 users being analyzed. Results: The resilience dictionary and taxonomy developed in this study, reveal how resilience indicators (ie, ?social capital,? ?belonging,? ?learning,? ?adaptive capacity,? and ?self-efficacy?) are characterized by themes commonly discussed in the forums; each theme?s top 10 most relevant descriptive terms and their synonyms; and the relatedness of resilience, reflecting a taxonomy of indicators that are more comprehensive (or compound) and more likely to facilitate the realization of others. The study showed that the resilience indicators ?learning,? ?belonging,? and ?social capital? were more commonly realized, and ?belonging? and ?learning? served as foundations for ?social capital? and ?adaptive capacity? across the 2-year study period. Conclusions: This study presents a resilience dictionary that improves our understanding of how aspects of resilience are realized in web-based mental health forums. The dictionary provides novel guidance on how to improve training to support and enhance automated systems for moderating mental health forum discussions. UR - https://formative.jmir.org/2022/9/e39013 UR - http://dx.doi.org/10.2196/39013 UR - http://www.ncbi.nlm.nih.gov/pubmed/36136394 ID - info:doi/10.2196/39013 ER - TY - JOUR AU - Adams, J. Elizabeth AU - Tallman, David AU - Haynam, L. Marcy AU - Nekhlyudov, Larissa AU - Lustberg, B. Maryam PY - 2022/9/20 TI - Psychosocial Needs of Gynecological Cancer Survivors: Mixed Methods Study JO - J Med Internet Res SP - e37757 VL - 24 IS - 9 KW - mixed methods KW - quantitative KW - qualitative KW - cancer survivorship KW - gynecological cancer KW - uterine cancer KW - ovarian cancer KW - cancer informatics KW - patient discussion KW - social media N2 - Background: Internet and social media platforms offer insights into the lived experiences of survivors of cancer and their caregivers; however, the volume of narrative data available is often cumbersome for thorough analysis. Survivors of gynecological cancer have unique needs, such as those related to a genetic predisposition to future cancers, impact of cancer on sexual health, the advanced stage at which many are diagnosed, and the influx of new therapeutic approaches. Objective: This study aimed to present a unique methodology to leverage large amounts of data from internet-based platforms for mixed methods analysis. We analyzed discussion board posts made by survivors of gynecological cancer on the American Cancer Society website with a particular interest in evaluating the psychosocial aspects of survivorship. Methods: All posts from the ovarian, uterine, and gynecological cancers (other than ovarian and uterine) discussion boards on the American Cancer Society Cancer Survivors Network were included. Posts were web scraped using Python and organized by psychosocial themes described in the Quality of Cancer Survivorship Care Framework. Keywords related to each theme were generated and verified. Keywords identified posts related to the predetermined psychosocial themes. Quantitative analysis was completed using Python and R Foundation for Statistical Computing packages. Qualitative analysis was completed on a subset of posts as a proof of concept. Themes discovered through latent Dirichlet allocation (LDA), an unsupervised topic modeling technique, were assessed and compared with the predetermined themes of interest. Results: A total of 125,498 posts made by 6436 survivors of gynecological cancer and caregivers between July 2000 and February 2020 were evaluated. Of the 125,489 posts, 23,458 (18.69%) were related to the psychosocial experience of cancer and were included in the mixed methods psychosocial analysis. Quantitative analysis (23,458 posts) revealed that survivors across all gynecological cancer discussion boards most frequently discussed the role of friends and family in care, as well as fatigue, the effect of cancer on interpersonal relationships, and health insurance status. Words related to psychosocial aspects of survivorship most often used in posts included ?family,? ?hope,? and ?help.? Qualitative analysis (20 of the 23,458 posts) similarly demonstrated that survivors frequently discussed coping strategies, distress and worry, the role of family and caregivers in their cancer care, and the toll of managing financial and insurance concerns. Using LDA, we discovered 8 themes, none of which were directly related to psychosocial aspects of survivorship. Of the 56 keywords identified by LDA, 2 (4%), ?sleep? and ?work,? were included in the keyword list that we independently devised. Conclusions: Web-based discussion platforms offer a great opportunity to learn about patient experiences of survivorship. Our novel methodology expedites the quantitative and qualitative analyses of such robust data, which may be used for additional patient populations. UR - https://www.jmir.org/2022/9/e37757 UR - http://dx.doi.org/10.2196/37757 UR - http://www.ncbi.nlm.nih.gov/pubmed/36125848 ID - info:doi/10.2196/37757 ER - TY - JOUR AU - Yeo, GeckHong AU - Chang, Weining AU - Lee, Neng Li AU - Oon, Matt AU - Ho, Dean PY - 2022/9/20 TI - A Digital Peer Support Platform to Translate Web-Based Peer Support for Emerging Adult Mental Well-being: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e34602 VL - 11 IS - 9 KW - mental health KW - digital health KW - peer support intervention KW - peer emotional disclosure KW - randomized controlled trial N2 - Background: Mental health issues among emerging adults (aged 19-25 years) on a global scale have underscored the need to address their widespread experiences of depression and anxiety. As a result of the COVID-19 pandemic, emerging studies are being directed toward the development and deployment of digital peer emotional disclosure and support for the psychological well-being of emerging adults. However, it is important to explore the implementation and clinical effectiveness, as well as associated mechanisms of change, for optimal approaches in conducting digital peer support interventions for emerging adults? psychological well-being. Objective: We describe a randomized controlled trial to evaluate the implementation and clinical effectiveness of Acceset, a digital peer support intervention to address emerging adult mental well-being. The intervention has 2 components. First, the digital peer support training equips befrienders (ie, peers who provide support) to harness 4 components of psychological well-being?mattering, selfhood, compassion, and mindfulness?to provide effective peer support for seekers (ie, peers who seek support). Second, Acceset incorporates psychological well-being digital markers and harnesses community engagement to drive emotional disclosure among peers. Methods: A total of 100 participants (aged 19-25 years) from the National University of Singapore will be recruited and randomized into 2 arms. In arm 1 (n=50), the seekers will use Acceset with befrienders (n=30) as well as moderators (n=30) for 3 weeks. Arm 2 comprises a wait-listed control group (n=50). A questionnaire battery will be used to monitor seekers and befrienders at 4 time points. These include baseline (before the intervention), 3 weeks (end of the intervention), and 6 and 9 weeks (carryover effect measurement). Implementation outcomes of the intervention will involve evaluation of the training curriculum with respect to adoption and fidelity as well as user acceptability of the Acceset platform and its feasibility for broader deployment. Clinical outcomes will include mattering, selfhood, compassion, mindfulness, perceived social support, and psychological well-being scores. Results: This protocol received National University of Singapore Institutional Ethics Review Board approval in October 2021. Recruitment will commence in January 2022. We expect data collection and analyses to be completed in June 2022. Preliminary findings are expected to be published in December 2022. The Cohen d index will be used for effect size estimation with a .05 (95% reliability) significance level and 80% power. Conclusions: This protocol considers a novel digital peer support intervention?Acceset?that incorporates components and digital markers of emerging adult mental well-being. Through the validation of the Acceset intervention, this study defines the parameters and conditions for digital peer support interventions for emerging adults. Trial Registration: ClinicalTrials.gov NCT05083676; https://clinicaltrials.gov/ct2/show/NCT05083676 International Registered Report Identifier (IRRID): PRR1-10.2196/34602 UR - https://www.researchprotocols.org/2022/9/e34602 UR - http://dx.doi.org/10.2196/34602 UR - http://www.ncbi.nlm.nih.gov/pubmed/36125855 ID - info:doi/10.2196/34602 ER - TY - JOUR AU - Chi, Yu AU - Thaker, Khushboo AU - He, Daqing AU - Hui, Vivian AU - Donovan, Heidi AU - Brusilovsky, Peter AU - Lee, Ji Young PY - 2022/9/13 TI - Knowledge Acquisition and Social Support in Online Health Communities: Analysis of an Online Ovarian Cancer Community JO - JMIR Cancer SP - e39643 VL - 8 IS - 3 KW - online health community KW - ovarian cancer KW - health information needs KW - social support KW - knowledge acquisition N2 - Background: Patients and caregivers widely use online health communities (OHCs) to acquire knowledge from peers. Questions posed in OHCs reflect participants? learning objectives and differ in their level of cognitive complexity. However, little is known about the topics and levels of participants? learning objectives and the corresponding support they receive from members of OHCs. Objective: This study aimed to investigate the knowledge acquisition of patients and caregivers in an OHC. Specifically, we investigated the distribution and topics of posts with learning objectives at different cognitive complexity levels, the type and amount of social support provided to meet users? learning objectives at different cognitive complexity levels, and the influence of social support on the change in learning objectives. Methods: We collected 10 years of discussion threads from one of the most active ovarian cancer (OvCa) OHCs. A mixed methods approach was used, including qualitative content analysis and quantitative statistical analysis. Initial posts with questions were manually classified into 1 of the 3 learning objectives with increasing cognitive complexity levels, from low to high, based on the Anderson and Krathwohl taxonomy: understand, analyze, and evaluate. Manual content analysis and automatic classification models were used to identify the types of social support in the comments, including emotional support and 5 types of informational support: advice, referral, act, personal experience, and opinion. Results: The original data set contained 909 initial posts and 14,816 comments, and the final data set for the analysis contained 560 posts with questions and 3998 comments. Our results showed that patients with OvCa and their caregivers mainly used OHCs to acquire knowledge for low- to medium-level learning objectives. Of the questions, 82.3% (461/560) were either understand- or analyze-level questions, in which users were seeking to learn basic facts and medical concepts or draw connections among different situations and conditions. Only 17.7% (99/560) of the questions were at the evaluate level, in which users asked other OHC members to help them make decisions or judgments. Notably, OvCa treatment was the most popular topic of interest among all the questions, regardless of the level of learning objectives. Regarding the social support received for different levels of learning objectives, significant differences were found in the advice (F2437.84=9.69; P<.001), opinion (F2418.18=11.56; P<.001), and emotional support (F2395.88=3.24; P=.01), as determined by one-way ANOVA, whereby questions at the evaluate level were more likely to receive advice, opinion, and emotional support than questions at the lower levels. Additionally, receiving social support tends to drive users to increase the cognitive complexity of the learning objective in the next post. Conclusions: Our study establishes that OHCs are promising resources for acquiring knowledge of OvCa. Our findings have implications for designing better OHCs that serve the growing OvCa community. UR - https://cancer.jmir.org/2022/3/e39643 UR - http://dx.doi.org/10.2196/39643 UR - http://www.ncbi.nlm.nih.gov/pubmed/36099015 ID - info:doi/10.2196/39643 ER - TY - JOUR AU - Banwell, Emily AU - Hanley, Terry AU - De Ossorno Garcia, Santiago AU - Mindel, Charlotte AU - Kayll, Thomas AU - Sefi, Aaron PY - 2022/9/9 TI - The Helpfulness of Web-Based Mental Health and Well-being Forums for Providing Peer Support for Young People: Cross-sectional Exploration JO - JMIR Form Res SP - e36432 VL - 6 IS - 9 KW - adolescent mental health KW - peer support KW - web-based forums KW - web-based mental health N2 - Background: Young people are increasingly seeking out web-based support for their mental health and well-being. Peer support forums are popular with this age group, with young individuals valuing the fact that the forums are available 24/7, providing a safe and anonymous space for exploration. Currently, little systematic evaluation of the helpfulness of such forums in providing support has been conducted. Objective: This study examined the helpfulness of the support offered within web-based mental health and well-being peer support forums for young people. It specifically investigated the self-reported user ratings of helpfulness reported through the completion of a developing experience measure. The ratings will be used to consider further development of the measure and reflect upon the overall helpfulness of the forums as indicated by the reported scores. Methods: The study used routinely collected practice-based outcome data from web-based mental health forums for young people. These forums are hosted by the UK-based web-based therapy and support service, Kooth. A cross-sectional design was used to explore?using a range of inferential statistical measures?the outcomes reported by those accessing the forums using a Peer Online Community Experience Measure (POCEM). To consider the helpfulness in general, 23,443 POCEMs completed in 2020 were used. A second data set of 17,137 completed POCEMs from the same year was used to consider whether various engagement indicators had an impact upon the helpfulness rating. Results: Female users aged between 11 and 16 years predominantly completed the POCEM. This is in keeping with the majority of those using the service. In total, 74.6% (8240/11,045) of the scores on the POCEM indicated that the individuals found the posts helpful. An ANOVA indicated that male users were more likely to report obtaining intrapersonal support, whereas female users obtained interpersonal support. Furthermore, the POCEM scores reflected the internal consistency of the measure and provided an insight into the way that young people made use of the peer support resource; for instance, posts that were rated more helpful were correlated with spending longer time reading them, and the topics discussed varied throughout the day with more mental health issues being discussed later at night. Conclusions: The results seem to demonstrate that, overall, the young people involved in this study found web-based peer support helpful. They indicate that peer support can provide an important strand of care within a supportive mental health ecosystem, particularly during time periods when in-person support is typically closed. However, limitations were noted, suggesting that caution is needed when interpreting the results of this study. Although such services are incredibly well used, they have received little research attention to date. As such, further investigation into what constitutes helpful and unhelpful peer support is needed. UR - https://formative.jmir.org/2022/9/e36432 UR - http://dx.doi.org/10.2196/36432 UR - http://www.ncbi.nlm.nih.gov/pubmed/36083629 ID - info:doi/10.2196/36432 ER - TY - JOUR AU - Li, Mingda AU - Shi, Jinhe AU - Chen, Yi PY - 2022/8/31 TI - Identifying Influences in Patient Decision-making Processes in Online Health Communities: Data Science Approach JO - J Med Internet Res SP - e30634 VL - 24 IS - 8 KW - influence relationship KW - decision-making threads KW - online health communities KW - patient engagement KW - deep learning KW - text relevance measurement N2 - Background: In recent years, an increasing number of users have joined online health communities (OHCs) to obtain information and seek support. Patients often look for information and suggestions to support their health care decision-making. It is important to understand patient decision-making processes and identify the influences that patients receive from OHCs. Objective: We aimed to identify the posts in discussion threads that have influence on users who seek help in their decision-making. Methods: We proposed a definition of influence relationship of posts in discussion threads. We then developed a framework and a deep learning model for identifying influence relationships. We leveraged the state-of-the-art text relevance measurement methods to generate sparse feature vectors to present text relevance. We modeled the probability of question and action presence in a post as dense features. We then used deep learning techniques to combine the sparse and dense features to learn the influence relationships. Results: We evaluated the proposed techniques on discussion threads from a popular cancer survivor OHC. The empirical evaluation demonstrated the effectiveness of our approach. Conclusions: It is feasible to identify influence relationships in OHCs. Using the proposed techniques, a significant number of discussions on an OHC were identified to have had influence. Such discussions are more likely to affect user decision-making processes and engage users? participation in OHCs. Studies on those discussions can help improve information quality, user engagement, and user experience. UR - https://www.jmir.org/2022/8/e30634 UR - http://dx.doi.org/10.2196/30634 UR - http://www.ncbi.nlm.nih.gov/pubmed/36044266 ID - info:doi/10.2196/30634 ER - TY - JOUR AU - Ashtari, Sadaf AU - Taylor, Daniel Adam PY - 2022/8/25 TI - The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups JO - J Med Internet Res SP - e39172 VL - 24 IS - 8 KW - online peer support group KW - genetic disorders KW - pain management KW - Ehlers-Danlos syndrome KW - EDS KW - chronic pain KW - health care provider KW - pain mitigation techniques N2 - Background: Patients struggling with rare diseases may face challenges caused by care providers being unfamiliar with their condition. The life span of people with rare diseases may be the same as that of healthy people, but their quality of life is different. Patients with chronic pain are constantly looking for ways to mitigate their pain. Pain killers are not a permanent solution. In addition to the medical and nonmedical costs of rare diseases for both patients and health care providers, there is a need for sustainable sources of information that are available to help with pain and improve their quality of life, with the goal of reducing physician visits and hospital admissions. Objective: This study investigated the challenges that patients with genetic disorders face in managing their health conditions and finding disease-related information as well as the effect of online peer support groups on pain mitigation and care management. Methods: Interviews were conducted via Zoom between July 2021 and December 2021. Eligible participants were those who were aged >18 years, had a medical diagnosis of any type of Ehlers-Danlos syndrome (EDS) with chronic pain, and were members of any support group. Participants were recruited through an announcement in the research and survey section of The Ehlers-Danlos Syndrome Society web page. Interviews were analyzed using the framework approach. Data were systematically searched to identify patterns, analyze them, and identify themes. Interview audio files were transcribed and independently coded by two researchers (SA and AT). Through an iterative process, a final coding table was agreed upon by the researchers and used to thematically analyze the data. Results: We interviewed 30 participants (mean age 37.7, SD 15 years; n=28, 93% were women; n=23, 77% were residing in the United States). Thematic analysis revealed that participants (patients with EDS) were constantly in pain and most of them have not received accurate and timely diagnoses for many years. They expressed their challenges with health care providers regarding diagnosis and treatment, and complained about their providers? lack of support and knowledge. Participants? main sources of information were web-based searches, academic journals, The Ehlers-Danlos Syndrome Society web page, and online peer support groups on Facebook, Reddit, Twitter, and Instagram. Although pain killers, cannabis, and opioids are providing some pain relief, most patients (28/30, 93%) focused on nonmedical approaches, such as hot or ice packs, physical therapy, exercises, massage, mindfulness, and meditation. Conclusions: This study highlights the information gap between health care providers and patients with genetic disorders. Patients with EDS seek access to information from different web-based sources. To meet the needs of patients with genetic disorders, future interventions via web-based resources for improving the quality of care must be considered by health care professionals and government agencies. UR - https://www.jmir.org/2022/8/e39172 UR - http://dx.doi.org/10.2196/39172 UR - http://www.ncbi.nlm.nih.gov/pubmed/36006679 ID - info:doi/10.2196/39172 ER - TY - JOUR AU - Naserianhanzaei, Elahe AU - Koschate-Reis, Miriam PY - 2022/8/22 TI - Effects of Substance Use, Recovery, and Non?Drug-Related Online Community Participation on the Risk of a Use Episode During Remission From Opioid Use Disorder: Longitudinal Observational Study JO - J Med Internet Res SP - e36555 VL - 24 IS - 8 KW - online communities KW - opioid addiction KW - recovery capital KW - social identity KW - Reddit KW - social media N2 - Background: Opioid addiction is currently one of the most pressing public health issues. Despite several treatment options for opioid addiction, the recurrence of use episodes during remission remains high. Research indicates that meaningful membership in various social groups underpins the successful transition from addiction to long-term remission. However, much of the current literature focuses on online peer-support groups for individuals in remission from substance use, sometimes also called recovery groups, a term we will use in line with the terminology used by the online community we studied. In contrast, online group memberships that promote substance use and groups that are unrelated to substance use and remission (non?drug-related groups) are rarely studied. Objective: This study aims to understand whether engagement with a variety of Reddit subforums (subreddits) provides those in remission from opioid use disorder (OUD) with social capital, thereby reducing their risk of a use episode over several years. More specifically, it aims to examine the different effects of engagement with substance use, recovery, and non?drug-related subreddits. Methods: A data set of 457 individuals in remission from OUD who posted their remission start date on Reddit was collected, of whom 219 (47.9%) indicated at least one use episode during the remission period. Using a Cox proportional hazards model, the effects of the number of non?drug-related, recovery, and substance use subreddits an individual had engaged with on the risk of a use episode were tested. Group engagement was assessed both in terms of the absolute number of subreddits and as a proportion of the total number of subreddits in which an individual had posted. Results: Engagement with a larger number of non?drug-related online communities reduced the likelihood of a use episode irrespective of the number of posts and comments made in these forums. This was true for both the absolute number of non?drug-related communities (P<.001) and the proportion of communities with which a person engaged (P<.001). The findings were less conclusive for recovery support and substance use groups; although participating in more recovery support subreddits reduced the risk of a use episode (P<.001), being part of a higher proportion of recovery support groups relative to other subreddits increased the risk (P=.01). A higher proportion of substance use subreddits marginally increased the risk of a use episode (P=.06); however, the absolute number of substance use subreddits significantly reduced the risk of a use episode (P=.002). Conclusions: Our work indicates that even minimal regular engagement with several non?drug-related online forums may provide those in remission from OUD with an opportunity to grow their social capital and reduce the risk of a use episode over several years. UR - https://www.jmir.org/2022/8/e36555 UR - http://dx.doi.org/10.2196/36555 UR - http://www.ncbi.nlm.nih.gov/pubmed/35994333 ID - info:doi/10.2196/36555 ER - TY - JOUR AU - Milios, Athena AU - Xiong, Ting AU - McEwan, Karen AU - McGrath, Patrick PY - 2022/8/18 TI - Personality, Attitudes, and Behaviors Predicting Perceived Benefit in Online Support Groups for Caregivers: Mixed Methods Study JO - JMIR Nursing SP - e36167 VL - 5 IS - 1 KW - online support groups KW - personality KW - support group KW - online support KW - peer support KW - caregiver KW - caregiving KW - caring KW - mother KW - father KW - usage pattern KW - extraversion KW - neuroticism KW - neurotic KW - agreeable KW - benefit KW - eHealth KW - Canada KW - North America KW - parent KW - neurodevelopment disorder KW - attitude KW - online behavior KW - emotional support KW - perceived benefit N2 - Background: Online support groups (OSGs) are distance-delivered, easily accessible health interventions offering emotional, informational, and experience-based support and companionship or network support for caregivers managing chronic mental and physical health conditions. Objective: This study aimed to examine the relative contribution of extraversion, agreeableness, neuroticism, positive attitudes toward OSGs on social networking sites, and typical past OSG use patterns in predicting perceived OSG benefit in an OSG for parents and caregivers of children with neurodevelopmental disorders. Methods: A mixed methods, longitudinal design was used to collect data from 81 parents across Canada. Attitudes toward OSGs and typical OSG use patterns were assessed using the author-developed Attitudes Toward OSGs subscale (eg, ?Online support groups are a place to get and give emotional support?) and Past Behaviors in OSGs subscale (eg, ?How often would you typically comment on posts??) administered at baseline?before OSG membership. The personality traits of extraversion, agreeableness, and neuroticism were assessed at baseline using the Ten-Item Personality Inventory. Perceived OSG benefit was assessed using the author-developed Perceived OSG Benefit scale (eg, ?Overall, did you feel supported by other members in this group??), administered 2 months after the initiation of OSG membership. Results: A hierarchical regression analysis found that extraversion was the only variable that significantly predicted perceived OSG benefit (R2=0.125; P<.001). Conclusions: The key suggestions for improving future OSGs were facilitating more in-depth, customized, and interactive content in OSGs. UR - https://nursing.jmir.org/2022/1/e36167 UR - http://dx.doi.org/10.2196/36167 UR - http://www.ncbi.nlm.nih.gov/pubmed/35980741 ID - info:doi/10.2196/36167 ER - TY - JOUR AU - Vuku?i? Rukavina, Tea AU - Machala Popla?en, Lovela AU - Majer, Marjeta AU - Reli?, Danko AU - Viski?, Jo?ko AU - Mareli?, Marko PY - 2022/8/9 TI - Defining Potentially Unprofessional Behavior on Social Media for Health Care Professionals: Mixed Methods Study JO - JMIR Med Educ SP - e35585 VL - 8 IS - 3 KW - professionalism KW - e-professionalism KW - internet KW - social media KW - social networking KW - medicine KW - dental medicine KW - health care professionals KW - students KW - faculty N2 - Background: Social media presence among health care professionals is ubiquitous and largely beneficial for their personal and professional lives. New standards are forming in the context of e-professionalism, which are loosening the predefined older and offline terms. With these benefits also come dangers, with exposure to evaluation on all levels from peers, superiors, and the public, as witnessed in the #medbikini movement. Objective: The objectives of this study were to develop an improved coding scheme (SMePROF coding scheme) for the assessment of unprofessional behavior on Facebook of medical or dental students and faculty, compare reliability between coding schemes used in previous research and SMePROF coding scheme, compare gender-based differences for the assessment of the professional content on Facebook, validate the SMePROF coding scheme, and assess the level of and to characterize web-based professionalism on publicly available Facebook profiles of medical or dental students and faculty. Methods: A search was performed via a new Facebook account using a systematic probabilistic sample of students and faculty in the University of Zagreb School of Medicine and School of Dental Medicine. Each profile was subsequently assessed with regard to professionalism based on previously published criteria and compared using the SMePROF coding scheme developed for this study. Results: Intercoder reliability increased when the SMePROF coding scheme was used for the comparison of gender-based coding results. Results showed an increase in the gender-based agreement of the final codes for the category professionalism, from 85% in the first phase to 96.2% in the second phase. Final results of the second phase showed that there was almost no difference between female and male coders for coding potentially unprofessional content for students (7/240, 2.9% vs 5/203, 2.5%) or for coding unprofessional content for students (11/240, 4.6% vs 11/203, 5.4%). Comparison of definitive results between the first and second phases indicated an understanding of web-based professionalism, with unprofessional content being very low, both for students (9/222, 4.1% vs 12/206, 5.8%) and faculty (1/25, 4% vs 0/23, 0%). For assessment of the potentially unprofessional content, we observed a 4-fold decrease, using the SMePROF rubric, for students (26/222, 11.7% to 6/206, 2.9%) and a 5-fold decrease for faculty (6/25, 24% to 1/23, 4%). Conclusions: SMePROF coding scheme for assessing professionalism of health-care professionals on Facebook is a validated and more objective instrument. This research emphasizes the role that context plays in the perception of unprofessional and potentially unprofessional content and provides insight into the existence of different sets of rules for web-based and offline interaction that marks behavior as unprofessional. The level of e-professionalism on Facebook profiles of medical or dental students and faculty available for public viewing has shown a high level of understanding of e-professionalism. UR - https://mededu.jmir.org/2022/3/e35585 UR - http://dx.doi.org/10.2196/35585 UR - http://www.ncbi.nlm.nih.gov/pubmed/35758 ID - info:doi/10.2196/35585 ER - TY - JOUR AU - Haufler, Alisa AU - Ditzen, Beate AU - Schüler, Julia PY - 2022/8/9 TI - Social Support as a Stress Buffer or Stress Amplifier and the Moderating Role of Implicit Motives: Protocol for a Randomized Study JO - JMIR Res Protoc SP - e39509 VL - 11 IS - 8 KW - stress KW - Trier Social Stress Test KW - social support KW - social motives, cortisol, reproductive hormones N2 - Background: Previous research shows that providing social support in socioevaluative stress situations reduces participants? stress responses. This stress-buffer effect, however, does not hold for everybody, and some studies even found a stress-amplifying effect of social support. Motive disposition research suggests that social motives (affiliation and power) lead to differential and sometimes even opposing affective and physiological responses to interpersonal interaction processes. We here integrate both lines of research and hypothesize that participants with strong affiliation motives benefit, while participants with strong power motives do not benefit from social support in terms of psychobiological responses to a given stressor. Further, participants with strong affiliation and power motives are expected to respond to social support with the arousal of motive-specific affects and reproductive hormone responses (affiliation: progesterone; power: estradiol and testosterone). In addition, we test sex differences in the response to social support and in the strengths of social motives. Objective: The main objective of this study is to test whether social motives and participants? sex moderate the effects of social support in stressful situations. Methods: We aim to collect data from 308 participants recruited at our local university. Participants? social motives are assessed using a standardized measure in motive research (Picture Story Exercise). Then, the Trier Social Stress Test for Groups (TSST-G) is used to experimentally induce psychosocial stress. One group of participants receives social support from an associate of the experimenter, while the control group does not receive social support. Stress responses will be assessed by a modified version of the state anxiety scale of the State?Trait Anxiety Inventory and by physiological indicators of stress (cortisol and ?-amylase from saliva samples) at 7 measurement points. Reproductive hormones will be analyzed in 4 of these 7 saliva samples. Heart rate and heart rate variability will be assessed continuously. We will additionally measure participants? performance in an interview (part of the TSST-G) using a self-developed categorization system. Results: The Ethics Committee of the University of Constance approved the application to conduct the study on December 18, 2018. Furthermore, the study was retrospectively registered in the German Clinical Trials Register (DKRS; ID: DRKS00028503) on March 09, 2022. The start of the experiment was planned for the beginning of 2019, but was postponed to June 2021 due to COVID-19. Publication of the first results is planned for spring 2023. Conclusions: Our theory-driven integration of social motives in social support research and the precise analysis of sex differences might disentangle inconsistent findings in TSST research. The more faceted view on individual differences has direct implications for applied contexts as it provides a framework for tailored conceptualizations of social support programs. Trial Registration: German Clinical Trials Register DRKS00028503; https://tinyurl.com/5a87x4da International Registered Report Identifier (IRRID): PRR1-10.2196/39509 UR - https://www.researchprotocols.org/2022/8/e39509 UR - http://dx.doi.org/10.2196/39509 UR - http://www.ncbi.nlm.nih.gov/pubmed/35943794 ID - info:doi/10.2196/39509 ER - TY - JOUR AU - Nishikitani, Mariko AU - Ariyoshi, Mie AU - Nohara, Yasunobu AU - Umihara, Junko PY - 2022/8/3 TI - Communications Through Contemporary Tools of Information and Communication Technology: Cross-sectional Study Evaluating Health Among Separated Family Members JO - JMIR Form Res SP - e34949 VL - 6 IS - 8 KW - family relations KW - interpersonal communication KW - internet use KW - smartphone KW - home environment KW - psychosocial functioning N2 - Background: The number of single-living workers separated from their spouses and families has been increasing due to the need to create a balance between life and work. Workers are assigned everywhere in globalized workplaces while also caring for their family members in the context of Japan?s aging society. At the same time, the mental and health status of persons living separately from their families is a matter of concern. The development of interpersonal communication means using information and communications technology (ICT) tools and the internet is remarkable, enabling simultaneous 2-way communication across distances and national borders. The easy accessibility to simultaneous communication is expected to improve the psychosocial status of isolated family members. Objective: This study aims to clarify the health benefits of ICT by using a psychosocial health assessment, the characteristics of ICT tools, and the frequency of communication among the workers and their families who live separately. Methods: This was a cross-sectional study planned and conducted in Japan. Study participants, including adults who live separately from other family members or have separately living family members due to work, were recruited to answer a web response survey about ICT usage status, health status, and life and society evaluation. This study recruited 73 participants divided into 2 groups by their communication tools and frequencies, and their separated life, health, and psychosocial status were statistically compared. Results: Among the 73 study participants, 15 were categorized in the high communication?skilled (HCS) group that used both types of ICT tools to communicate frequently: ?live,? such as video chat and voice call, and ?nonlive,? such as SMS text message service and email. A simple comparison between the HCS and reference groups showed significant differences in the cohesion with the neighborhood (P=.03), perceived social position (P=.01), and happiness (P<.001); however, there were no significant differences in the health (psychological distress, P=.08; self-rated health, P=.07), lifestyle (drinking, P>.99; current smoking, P=.37), and dyadic trust in family members living separately (P=.80). Further, in a multivariate regression analysis adjusted for confounding factors, such as educational history, age, gender, and job status, poor subjective health showed a prevalence odds ratio of less than 1 (OR 0.17, 95% CI 0.03-1.02). The HCS group showed significant positive relationships in the cohesion score with the neighborhood (P=.01; ?=2.40, 95% CI 0.56-4.24), perceived social position (P=.03; ?=1.17, 95% CI 0.11-2.23), and happiness score (P=.002; ?=1.46, 95% CI 0.58-2.34) in the same multivariate regression models. Conclusions: This study suggested that people who frequently communicate with separated family members by taking advantage of various ICT tools can maintain a better mental state and better social relations among those who live alone and are separated from their families. UR - https://formative.jmir.org/2022/8/e34949 UR - http://dx.doi.org/10.2196/34949 UR - http://www.ncbi.nlm.nih.gov/pubmed/35921127 ID - info:doi/10.2196/34949 ER - TY - JOUR AU - Stemmer, Maya AU - Parmet, Yisrael AU - Ravid, Gilad PY - 2022/8/2 TI - Identifying Patients With Inflammatory Bowel Disease on Twitter and Learning From Their Personal Experience: Retrospective Cohort Study JO - J Med Internet Res SP - e29186 VL - 24 IS - 8 KW - patient identification KW - inflammatory bowel disease KW - IBD KW - user classification KW - Twitter KW - natural language processing KW - NLP KW - sentiment analysis N2 - Background: Patients use social media as an alternative information source, where they share information and provide social support. Although large amounts of health-related data are posted on Twitter and other social networking platforms each day, research using social media data to understand chronic conditions and patients? lifestyles is limited. Objective: In this study, we contributed to closing this gap by providing a framework for identifying patients with inflammatory bowel disease (IBD) on Twitter and learning from their personal experiences. We enabled the analysis of patients? tweets by building a classifier of Twitter users that distinguishes patients from other entities. This study aimed to uncover the potential of using Twitter data to promote the well-being of patients with IBD by relying on the wisdom of the crowd to identify healthy lifestyles. We sought to leverage posts describing patients? daily activities and their influence on their well-being to characterize lifestyle-related treatments. Methods: In the first stage of the study, a machine learning method combining social network analysis and natural language processing was used to automatically classify users as patients or not. We considered 3 types of features: the user?s behavior on Twitter, the content of the user?s tweets, and the social structure of the user?s network. We compared the performances of several classification algorithms within 2 classification approaches. One classified each tweet and deduced the user?s class from their tweet-level classification. The other aggregated tweet-level features to user-level features and classified the users themselves. Different classification algorithms were examined and compared using 4 measures: precision, recall, F1 score, and the area under the receiver operating characteristic curve. In the second stage, a classifier from the first stage was used to collect patients' tweets describing the different lifestyles patients adopt to deal with their disease. Using IBM Watson Service for entity sentiment analysis, we calculated the average sentiment of 420 lifestyle-related words that patients with IBD use when describing their daily routine. Results: Both classification approaches showed promising results. Although the precision rates were slightly higher for the tweet-level approach, the recall and area under the receiver operating characteristic curve of the user-level approach were significantly better. Sentiment analysis of tweets written by patients with IBD identified frequently mentioned lifestyles and their influence on patients? well-being. The findings reinforced what is known about suitable nutrition for IBD as several foods known to cause inflammation were pointed out in negative sentiment, whereas relaxing activities and anti-inflammatory foods surfaced in a positive context. Conclusions: This study suggests a pipeline for identifying patients with IBD on Twitter and collecting their tweets to analyze the experimental knowledge they share. These methods can be adapted to other diseases and enhance medical research on chronic conditions. UR - https://www.jmir.org/2022/8/e29186 UR - http://dx.doi.org/10.2196/29186 UR - http://www.ncbi.nlm.nih.gov/pubmed/35917151 ID - info:doi/10.2196/29186 ER - TY - JOUR AU - Gerritzen, Vera Esther AU - Lee, Rebecca Abigail AU - McDermott, Orii AU - Coulson, Neil AU - Orrell, Martin PY - 2022/7/27 TI - Online Peer Support for People With Parkinson Disease: Narrative Synthesis Systematic Review JO - JMIR Aging SP - e35425 VL - 5 IS - 3 KW - Parkinson disease KW - web-based health community KW - online peer support KW - narrative synthesis KW - systematic review N2 - Background: Parkinson disease (PD) significantly impacts the lives of people with the diagnosis and their families. In addition to the physical symptoms, living with PD also has an emotional impact. This can result in withdrawal from social roles, increasing the risk for social isolation and loneliness. Peer support is a way to stay socially connected, share experiences, and learn new coping skills. Peer support can be provided both in person and on the internet. Some of the advantages of online peer support are that it overcomes geographical barriers and provides a form of anonymity; moreover, support can be readily available when needed. However, the psychosocial impact of PD is still underresearched, and there is no systematic synthesis of online peer support for people with PD. Objective: This review aims to explore the benefits and challenges of online peer support and identify successful elements of online peer support for people with PD. Methods: The method selected for this systematic review is narrative synthesis. A total of 6 databases were systematically searched in April 2020 for articles published between 1989 and 2020. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black quality checklist. Results: A total of 10,987 unique articles were identified through a systematic database search. Of these 10,987 articles, 8 (0.07%) were included in this review. Of the 8 studies, 5 (63%) were of good or high quality, 2 (25%) were of medium or fair quality, and 1 (13%) study was of poor quality. Web-based platforms included discussion forums, a web-based virtual world, and Facebook groups. Most papers reported on text-based communication. The included studies reported on sharing social support and personal experiences. Successful elements included increasing similarity between members and offering the opportunity to directly ask questions to a physician. Challenges included members leaving without a warning and PD symptoms hindering the use of technology. Conclusions: Peer support can improve social support and help people with PD in living meaningful and satisfying lives. Peer support is unique and cannot be replaced by family members, friends, or health care professionals. Online peer support can be a solution for those who do not have access to an in-person support group or whose PD symptoms restrict them from travelling. However, research on the personal experiences of those who engage in online peer support and potential barriers in accessing it remains limited. Future research could use qualitative methods to explore these fields further. UR - https://aging.jmir.org/2022/3/e35425 UR - http://dx.doi.org/10.2196/35425 UR - http://www.ncbi.nlm.nih.gov/pubmed/35896025 ID - info:doi/10.2196/35425 ER - TY - JOUR AU - Coulson, S. Neil AU - Buchanan, Heather PY - 2022/7/26 TI - The Role of Online Support Groups in Helping Individuals Affected by HIV and AIDS: Scoping Review of the Literature JO - J Med Internet Res SP - e27648 VL - 24 IS - 7 KW - AIDS KW - HIV KW - online support groups KW - internet KW - peer support KW - social support KW - synthesis KW - systematic review N2 - Background: Online support groups provide opportunities for individuals affected by HIV and AIDS to seek information, advice, and support from peers. However, whether and how engagement with online support groups helps individuals affected by HIV and AIDS remains unclear, as does the nature of the evidence on this topic. Objective: This scoping review sought to explore whether engagement with HIV and AIDS?related online support groups benefits members in terms of psychosocial well-being and illness management, whether members experienced any negative aspects of these groups, and what types of social support are exchanged within HIV and AIDS?related online support groups. Methods: A scoping review of English-language articles (including both qualitative and quantitative studies) was undertaken using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. The databases searched included MEDLINE, PubMed, EMBASE, CINAHL, PsycINFO, CENTRAL (Cochrane Register of Controlled Trials), and Scopus. Key findings were synthesized using a narrative and thematic approach. Results: A total of 22 papers met the inclusion criteria from an initial pool of 3332 abstracts. These papers included 23% (5/22) quantitative studies, 9% (2/22) mixed methods studies, and 68% (15/22) qualitative studies published between 2007 and 2019. Cross-sectional evidence suggests that engagement with HIV and AIDS?related online support groups is empowering for members and may lead to a range of psychosocial benefits. Furthermore, qualitative evidence suggests that these groups provide an opportunity to connect with similar people and share experiences. This can help improve self-worth, reduce stigma, facilitate improved illness management, and gain greater confidence when interacting with health professionals. However, online support groups are not without their limitations as qualitative evidence suggests that users may encounter examples of interpersonal conflict between members as well as be exposed to challenging content. Finally, HIV and AIDS?related online support groups are avenues through which individuals can solicit support, most commonly informational or emotional. Conclusions: HIV and AIDS?related online support groups may have some benefits for members, particularly in terms of providing social support. There is a need for a systematic review of this literature that includes an assessment of the methodological quality of the available evidence. UR - https://www.jmir.org/2022/7/e27648 UR - http://dx.doi.org/10.2196/27648 UR - http://www.ncbi.nlm.nih.gov/pubmed/35881456 ID - info:doi/10.2196/27648 ER - TY - JOUR AU - Waddington, Claire AU - Harding, Emma AU - Brotherhood, V. Emilie AU - Davies Abbott, Ian AU - Barker, Suzanne AU - Camic, M. Paul AU - Ezeofor, Victory AU - Gardner, Hannah AU - Grillo, Adetola AU - Hardy, Chris AU - Hoare, Zoe AU - McKee-Jackson, Roberta AU - Moore, Kirsten AU - O?Hara, Trish AU - Roberts, Jennifer AU - Rossi-Harries, Samuel AU - Suarez-Gonzalez, Aida AU - Sullivan, Pat Mary AU - Edwards, Tudor Rhiannon AU - Van Der Byl Williams, Millie AU - Walton, Jill AU - Willoughby, Alicia AU - Windle, Gill AU - Winrow, Eira AU - Wood, Olivia AU - Zimmermann, Nikki AU - Crutch, J. Sebastian AU - Stott, Joshua PY - 2022/7/20 TI - The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation JO - JMIR Res Protoc SP - e35376 VL - 11 IS - 7 KW - dementia KW - Alzheimer disease KW - frontotemporal dementia KW - posterior cortical atrophy KW - Lewy body dementia KW - Lewy body disease KW - primary progressive aphasia KW - young-onset dementia KW - early-onset dementia KW - atypical dementia KW - virtual KW - web-based KW - videoconference KW - videophone KW - support group N2 - Background: People living with rarer dementias face considerable difficulty accessing tailored information, advice, and peer and professional support. Web-based meeting platforms offer a critical opportunity to connect with others through shared lived experiences, even if they are geographically dispersed, particularly during the COVID-19 pandemic. Objective: We aim to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia or young-onset Alzheimer disease, primary progressive aphasia, posterior cortical atrophy, or Lewy body dementia. This paper describes the development, coproduction, field testing, and evaluation plan for these groups. Methods: We describe a 3-phase approach to development. First, information and knowledge were gathered as part of a coproduction process with members of the Rare Dementia Support service. This information, together with literature searches and consultation with experts by experience, clinicians, and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 Rare Dementia Support members (people living with dementia and carers) participating in 2 rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, and hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed. Results: The development of the small groups program yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages program and creativity club for implementation in rounds 3 and beyond) to be delivered over 4 to 8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics, and geography; pre-post well-being ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; and economic analysis of program delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-post 3-word surveys indicated an increase in the emotional valence of words selected after the sessions. Conclusions: The involvement of people with lived experience of a rare dementia was critical to the design, development, and delivery of the small virtual support group program, and evaluation of this program will yield convergent data about the impact of tailored support delivered to geographically dispersed communities. This is the first study to design and plan an evaluation of VSGs specifically for people affected by rare dementias, including both people living with a rare dementia and their carers, and the outcome of the evaluation will be hugely beneficial in shaping specific and targeted support, which is often lacking in this population. International Registered Report Identifier (IRRID): DERR1-10.2196/35376 UR - https://www.researchprotocols.org/2022/7/e35376 UR - http://dx.doi.org/10.2196/35376 UR - http://www.ncbi.nlm.nih.gov/pubmed/35857375 ID - info:doi/10.2196/35376 ER - TY - JOUR AU - Braune, Katarina AU - Krug, Niklas AU - Knoll, Christine AU - Ballhausen, Hanne AU - Thieffry, Axel AU - Chen, Yanbing AU - O'Donnell, Shane AU - Raile, Klemens AU - Cleal, Bryan PY - 2022/7/14 TI - Emotional and Physical Health Impact in Children and Adolescents and Their Caregivers Using Open-source Automated Insulin Delivery: Qualitative Analysis of Lived Experiences JO - J Med Internet Res SP - e37120 VL - 24 IS - 7 KW - automated insulin delivery KW - closed-loop KW - do-it-yourself KW - open source KW - peer support KW - patient-reported outcomes KW - lived experiences KW - qualitative analysis KW - mobile phone N2 - Background: Given the limitations in the access and license status of commercially developed automated insulin delivery (AID) systems, open-source AID systems are becoming increasingly popular among people with diabetes, including children and adolescents. Objective: This study aimed to investigate the lived experiences and physical and emotional health implications of children and their caregivers following the initiation of open-source AID, their perceived challenges, and sources of support, which have not been explored in the existing literature. Methods: Data were collected through 2 sets of open-ended questions from a web-based multinational survey of 60 families from 16 countries. The narratives were thematically analyzed, and a coding framework was identified through iterative alignment. Results: A range of emotions and improvements in quality of life and physical health were reported, as open-source AID enabled families to shift their focus away from diabetes therapy. Caregivers were less worried about hypoglycemia at night and outside their family homes, leading to increased autonomy for the child. Simultaneously, the glycemic outcomes and sleep quality of both the children and caregivers improved. Nonetheless, the acquisition of suitable hardware and technical setup could be challenging. The #WeAreNotWaiting community was the primary source of practical and emotional support. Conclusions: Our findings show the benefits and transformative impact of open-source AID and peer support on children with diabetes and their caregivers and families, where commercial AID systems are not available or suitable. Further efforts are required to improve the effectiveness and usability and facilitate access for children with diabetes, worldwide, to benefit from this innovative treatment. International Registered Report Identifier (IRRID): RR2-10.2196/15368 UR - https://www.jmir.org/2022/7/e37120 UR - http://dx.doi.org/10.2196/37120 UR - http://www.ncbi.nlm.nih.gov/pubmed/35834298 ID - info:doi/10.2196/37120 ER - TY - JOUR AU - Kelly, Jennifer Katherine AU - Doucet, Shelley AU - Luke, Alison AU - Azar, Rima AU - Montelpare, William PY - 2022/7/6 TI - Experiences, Motivations, and Perceived Impact of Participation in a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study JO - JMIR Pediatr Parent SP - e33172 VL - 5 IS - 3 KW - caregiver experiences KW - peer-to-peer support KW - social support KW - social media KW - children with complex care needs KW - Facebook group N2 - Background: Caregivers of children and youth with complex care needs (CCNs) often require considerable support to ensure the well-being of their families. Social media present an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are a way in which caregivers are accessing needed support; however, the experiences of caregivers who use these groups and the perceived impact that participation has on caregivers of children and youth with CCNs are not known. Objective: This study aimed to explore the experiences of caregivers of children and youth with CCNs who use a Facebook-based P2P support group to communicate, understand their motivations to use the group, and investigate its perceived impact on knowledge of programs and services and sense of community belonging among caregivers. Methods: A qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based (Meta Platforms) P2P support group for caregivers of children and youth with CCNs in New Brunswick, Canada. The group was launched on the web in October 2020, during the COVID-19 pandemic, and resulted in 108 caregivers joining the group. A web-based survey was distributed, and semistructured interviews were conducted in February 2021 with a subsample of members. Thematic analysis was used to identify and report patterns related to caregivers? experiences and perceived impacts of participation. Results: A subsample of members in the Facebook group completed the web-based survey (39/108, 36.1%) and interviews (14/108, 12.9%). A total of 5 themes emerged from the interviews: safe space, informational support and direction, web-based connection with peers, impact on knowledge of programs and services, and degree of community belonging. Participants reported joining the group to obtain geography-specific information support and connect with peers. Many participants reported an improvement in their knowledge of programs and services and felt connected to the community; however, the short observation period and diversity among the caregiver population were cited as barriers to community belonging. Conclusions: Social media present an important opportunity to facilitate the exchange of support between patients and caregivers in an accessible and curated environment. Findings from this study suggest that involvement in web-based, geography-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCNs. Furthermore, this study provides insight into the experiences and motivations of caregivers of children and youth with CCNs who participate in a private social media environment. UR - https://pediatrics.jmir.org/2022/3/e33172 UR - http://dx.doi.org/10.2196/33172 UR - http://www.ncbi.nlm.nih.gov/pubmed/35793139 ID - info:doi/10.2196/33172 ER - TY - JOUR AU - Gerritzen, Vera Esther AU - McDermott, Orii AU - Orrell, Martin PY - 2022/7/5 TI - Development of Best Practice Guidance on Online Peer Support for People With Young Onset Dementia: Protocol for a Mixed Methods Study JO - JMIR Res Protoc SP - e38379 VL - 11 IS - 7 KW - young onset dementia KW - peer support KW - eHealth KW - social health KW - mixed methods N2 - Background: Many people with young onset dementia (YOD) may feel isolated. Peer support has the potential to improve social health, but the inconsistent availability of age-appropriate, in-person (peer) support services for people with YOD suggests that many people with YOD miss out on the potential benefits. Online peer support could be useful, as it overcomes geographical barriers, offers a variety of options, and adjusts to various needs and preferences. Objective: Our study aims to develop evidence-based best practice guidance on online peer support for people with YOD and group facilitators to improve online peer support for people with YOD. Methods: Our mixed methods study consists of 4 phases and follows the guidelines of the Medical Research Council on complex interventions. Each phase consists of multiple substudies. The study focuses on the development stage of the Medical Research Council framework and additionally develops a plan for the feasibility/piloting, evaluation, and implementation stages. The participants are people living with YOD and peer support facilitators. The qualitative research methods include interviews, focus groups, and open questions in a web-based survey. The quantitative methods include a web-based survey consisting of existing outcome measures. Results: The study is funded by the European Union?s Horizon 2020 research and innovation program under the Marie Sk?odowska-Curie Actions ? Innovative Training Networks (H2020-MSCA-ITN-2018; grant agreement number: 813196), and it received ethical approval from the London Bromley Research Ethics Committee (reference number: 21/LO/0248) in April 2021. Recruitment started in May 2021. Data collection and analysis are expected to be finished by September 2022. Conclusions: The best practice guidance can provide people with YOD with tailored and evidence-based information about online peer support, and it will be disseminated locally (in the United Kingdom) and internationally through dementia organizations, research networks, and academic institutions. International Registered Report Identifier (IRRID): DERR1-10.2196/38379 UR - https://www.researchprotocols.org/2022/7/e38379 UR - http://dx.doi.org/10.2196/38379 UR - http://www.ncbi.nlm.nih.gov/pubmed/35788470 ID - info:doi/10.2196/38379 ER - TY - JOUR AU - Myers, L. Amanda AU - Mbao, Mbita AU - Kadakia, Arya AU - Collings, Shira AU - Fortuna, L. Karen PY - 2022/6/30 TI - Experiences of Community Members Engaged in eCPR (Emotional Connecting, Empowering, Revitalizing) Training: Qualitative Focus Group Study JO - JMIR Form Res SP - e32219 VL - 6 IS - 6 KW - mental health KW - trauma KW - peer support KW - community mental health education N2 - Background: The United Nations has called for wide-scale community mental health psychoeducation; however, few programs currently exist. Emotional Connecting, Empowering, Revitalizing (eCPR) is a community education and training program developed by individuals with a lived experience of mental health challenges or trauma. It is designed to provide community members with skills and confidence to support someone experiencing mental health challenges. Objective: This qualitative study aimed to examine the user experiences of diverse community members engaged in eCPR training. This study reviewed their attitudes toward training and opportunities for improvement in future implementations of training. Methods: eCPR training participants (N=31) were invited to participate in virtual focus groups between June 2020 and July 2020. Data were analyzed using the rigorous and accelerated data reduction method, which converts raw textual data into concise data tables to develop a codebook, and thematic analysis was performed to identify common themes. Results: The themes identified when analyzing the data included emotional holding and containment, training feedback, principles and practices of eCPR, implementation, connection in a digital environment, skills practice, and shared experiences. Conclusions: eCPR may benefit individuals from multiple, diverse demographics. It can enhance their ability to connect with others to understand what it means to be with someone who is experiencing a mental health challenge or crisis, to accept their own emotions, and to be confident in being their most authentic self in both their work and personal lives. eCPR may answer the call of the United Nations by bringing opportunities for authenticity and healing to community settings. Exploring the effects of delivering eCPR in communities on individuals experiencing distress is an important next step. This study found that eCPR may be beneficial to many groups of trainees with varying backgrounds and experiences. These findings are important, as they speak to the potential for eCPR to be implemented in a variety of community settings with the intention of working to improve mental health in everyday settings. UR - https://formative.jmir.org/2022/6/e32219 UR - http://dx.doi.org/10.2196/32219 UR - http://www.ncbi.nlm.nih.gov/pubmed/35771610 ID - info:doi/10.2196/32219 ER - TY - JOUR AU - Tripathi, D. Sanidhya AU - Parker, D. Pearman AU - Prabhu, V. Arpan AU - Thomas, Kevin AU - Rodriguez, Analiz PY - 2022/6/22 TI - An Examination of Patients and Caregivers on Reddit Navigating Brain Cancer: Content Analysis of the Brain Tumor Subreddit JO - JMIR Cancer SP - e35324 VL - 8 IS - 2 KW - brain tumor KW - internet KW - social media KW - Reddit KW - cancer KW - emotional support KW - self-management N2 - Background: Occurring in up to 40% of all patients with cancer, the incidence of brain tumors has caused limited survival, a high psychosocial burden, and an increase in the loss of decision-making capability for the unique population. Although specific symptoms depend on the type of brain tumor, a clinical team of physicians, nurses, and other individuals commonly assist patients and their caregivers with how to tackle the upcoming challenges of their diagnosis. Despite the support from clinical team members, many patients and caregivers may still seek outside support through social media to process their emotions and seek comfort outside of the clinical setting. Specifically, online resources such as Reddit are used where users are provided with the anonymity they need to show their true behavior without fear of judgment. In this study, we aimed to examine trends from Reddit discussion threads on brain tumors to identify areas of need in patient care. Objective: Our primary aims were to determine the type of Reddit user posting, classify the specific brain tumors that were the subject of the posts, and examine the content of the original posts. Methods: We used a qualitative descriptive design to understand patients? and caregivers? unmet and met needs. We selected posts from the top-rated 100 posts from the r/braincancer subreddit from February 2017 to June 2020 to identify common themes using content analysis. Results: The qualitative content analysis revealed how Reddit users primarily used the forum as a method to understand and process the emotions surrounding a brain tumor diagnosis. Three major topic areas from content analysis emerged as prominent themes, including (1) harnessing hope, (2) moving through the grief process, and (3) expressing gratitude toward other Reddit users. Most of the authors of the posts were patients with brain tumors (32/88, 36%) who used Reddit as a reflective journaling tool to process the associated emotions of a challenging diagnosis. Conclusions: This study shows the potential of Reddit to serve as a unique group therapy platform for patients affected by brain tumors. Our results highlight the support provided by the Reddit community members as a unique mechanism to assist cancer survivors and caregivers with the emotional processing of living with brain tumors. Additionally, the results highlight the importance of recommending Reddit as a therapeutic virtual community and the need for implementing online resources as a part of a health care professional?s repertoire to understand the level of support they can give their patients. UR - https://cancer.jmir.org/2022/2/e35324 UR - http://dx.doi.org/10.2196/35324 UR - http://www.ncbi.nlm.nih.gov/pubmed/35731559 ID - info:doi/10.2196/35324 ER - TY - JOUR AU - Donnellan, James Warren AU - Warren, Grace Jasmine PY - 2022/6/17 TI - Emotional Word Use in Informal Carers of People Living With Dementia: Linguistic Analysis of Online Discussion Forums JO - JMIR Aging SP - e32603 VL - 5 IS - 2 KW - dementia care KW - online forum KW - emotional language KW - emotional states KW - dementia KW - aging KW - elderly population KW - digital health KW - online health N2 - Background: Informal dementia care is uniquely stressful and necessitates effective methods of identifying and understanding the needs of potentially at-risk carers so that they can be supported and sustained in their roles. One such method is examining carers? engagement in online support platforms. Research has explored emotional word use on online discussion forums as a proxy for underlying emotional functioning. We are not aware of any research that has analyzed the content of posts on discussion forums specific to carers of people living with dementia in order to examine their emotional states. Objective: We addressed the following research questions: (1) To what extent does emotional language use differ between carers of people living with dementia and noncarers? (2) To what extent does emotional language use differ between spousal and parental carers? (3) To what extent does emotional language use differ between current and former carers? Methods: We used the Linguistic Inquiry and Word Count (LIWC) program to examine emotional word use on a UK-based online forum for informal carers of people living with dementia and a discussion forum control group. Carers were separated into different subgroups for the analysis: current and former, and spousal and parental. Results: We found that carers of people living with dementia used significantly more negative, but not positive, emotion words than noncarers. Spousal carers used more emotion words overall than parental carers, specifically more negative emotion words. Former carers used more emotional words overall than current carers, specifically more positive words. Conclusions: The findings suggest that informal carers of people living with dementia may be at increased risk of negative emotional states relative to noncarers. Greater negativity in spousal carers may be explained by increased caregiver burden, whereas greater positivity in former carers may be explained by functional relief of caregiving responsibilities. The theoretical/applied relevance of these findings is discussed. UR - https://aging.jmir.org/2022/2/e32603 UR - http://dx.doi.org/10.2196/32603 UR - http://www.ncbi.nlm.nih.gov/pubmed/35713942 ID - info:doi/10.2196/32603 ER - TY - JOUR AU - Kelly, Jennifer Katherine AU - Doucet, Shelley AU - Luke, Alison AU - Azar, Rima AU - Montelpare, William PY - 2022/6/7 TI - Exploring the Use of a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study JO - JMIR Pediatr Parent SP - e33170 VL - 5 IS - 2 KW - peer-to-peer support KW - children KW - youth KW - complex care needs KW - social media KW - social support N2 - Background: Caregivers of children and youth with complex care needs (CCN) require substantial support to ensure the well-being of their families. Web-based peer-to-peer (P2P) support groups present an opportunity for caregivers to seek and provide timely informational and emotional support. Despite the widespread use of social media for health-related support across diverse patient and caregiver populations, it is unclear how caregivers of children and youth with CCN use and potentially benefit from these groups. Objective: The aim of this study is to explore the use of a web-based P2P support group for caregivers of children and youth with CCN in New Brunswick, Canada, and investigate factors related to its use by members. Methods: The study sample consisted of individuals who joined a closed Facebook group and an analysis of content published to the group. In phase 1, a Facebook group was developed in consultation with a patient and family advisory council, and members were recruited to the group. Phase 2 of this study consisted of an observation period during which posts and related interactions (ie, likes, loves, and comments) by members were collected. In phase 3, a web-based survey was distributed, and semistructured interviews were conducted with a subsample of group members. Survey and interview data were analyzed using thematic analysis. Results: A total of 108 caregivers joined the Facebook group between October 2020 and March 2021. There were 93 posts with 405 comments and 542 associated interactions (448/542, 82.7% likes and 94/542, 17.3% loves). Of these 93 posts, 37 (40%) were made by group members, and 56 (60%) were made by moderators. Of the 108 members, a subsample of 39 (36.1%) completed a web-based survey, and 14 (13%) participated in the interviews. Content analyses of posts by members revealed that inquiry (17/37, 46%), informational (15/37, 41%), and emotional posts (4/37, 11%) were the most common. Emotional posts received the highest number of interactions (median 24.5). In total, 5 themes emerged from the interviews related to the use of the group and mediating factors of interactions between group members: resource for information, altruistic contribution, varying level of engagement, perceived barriers to and facilitators of group activity, and moderators as contributing members. Conclusions: These findings demonstrate that caregivers of children and youth with CCN seek geography-specific P2P support groups to meet informational and social support needs. This study contributes to the knowledge on how caregivers use Facebook groups to meet their support needs through moderate and passive engagement. UR - https://pediatrics.jmir.org/2022/2/e33170 UR - http://dx.doi.org/10.2196/33170 UR - http://www.ncbi.nlm.nih.gov/pubmed/35671082 ID - info:doi/10.2196/33170 ER - TY - JOUR AU - Cirillo, N. Madison AU - Halbert, P. Jennifer AU - Smith, Gomez Jessica AU - Alamiri, Sami Nour AU - Ingersoll, S. Karen PY - 2022/5/30 TI - #BingeDrinking?Using Social Media to Understand College Binge Drinking: Qualitative Study JO - JMIR Hum Factors SP - e36239 VL - 9 IS - 2 KW - college students KW - binge drinking KW - social media KW - young adults N2 - Background: Hazardous drinking among college students persists, despite ongoing university alcohol education and alcohol intervention programs. College students often post comments or pictures of drinking episodes on social media platforms. Objective: This study aimed to understand one university?s student attitudes toward alcohol use by examining student posts about drinking on social media platforms and to identify opportunities to reduce alcohol-related harm and inform novel alcohol interventions. Methods: We analyzed social media posts from 7 social media platforms using qualitative inductive coding based on grounded theory to identify the contexts of student drinking and the attitudes and behaviors of students and peers during drinking episodes. We reviewed publicly available social media posts that referenced alcohol, collaborating with undergraduate students to select their most used platforms and develop locally relevant search terms; all posts in our data set were generated by students associated with a specific university. From the codes, we derived themes about student culture regarding alcohol use. Results: In total, 1151 social media posts were included in this study. These included 809 Twitter tweets, 113 Instagram posts, 100 Greekrank posts, 64 Reddit posts, 34 College Confidential posts, 23 Facebook posts, and 8 YouTube posts. Posts included both implicit and explicit portrayals of alcohol use. Across all types of posts reviewed, positive drinking attitudes were most common, followed by negative and then neutral attitudes, but valence varied by platform. Posts that portrayed drinking positively received positive peer feedback and indicate that drinking is viewed by students as an essential and positive part of university student culture. Conclusions: Social media provide a real-time picture of students? behavior during their own and others? heavy drinking. Posts portray heavy drinking as a normal part of student culture, reinforced by peers? positive feedback on posts. Interventions for college drinking should help students manage alcohol intake in real time, provide safety information during alcohol use episodes, and raise student awareness of web-based privacy concerns and reputation management. Additional interventions for students, alumni, and parents are needed to address positive attitudes about and traditions of drinking. UR - https://humanfactors.jmir.org/2022/2/e36239 UR - http://dx.doi.org/10.2196/36239 UR - http://www.ncbi.nlm.nih.gov/pubmed/35635740 ID - info:doi/10.2196/36239 ER - TY - JOUR AU - Gamhewage, Gaya AU - Mahmoud, Essam Mohamed AU - Tokar, Anna AU - Attias, Melissa AU - Mylonas, Christos AU - Canna, Sara AU - Utunen, Heini PY - 2022/5/26 TI - Digital Transformation of Face-To-Face Focus Group Methodology: Engaging a Globally Dispersed Audience to Manage Institutional Change at the World Health Organization JO - J Med Internet Res SP - e28911 VL - 24 IS - 5 KW - qualitative research KW - digitalization KW - WHO KW - World Health Organization KW - FGDs KW - focus group discussions UR - https://www.jmir.org/2022/5/e28911 UR - http://dx.doi.org/10.2196/28911 UR - http://www.ncbi.nlm.nih.gov/pubmed/35617007 ID - info:doi/10.2196/28911 ER - TY - JOUR AU - Day, S. Hannah L. PY - 2022/5/20 TI - Exploring Online Peer Support Groups for Adults Experiencing Long COVID in the United Kingdom: Qualitative Interview Study JO - J Med Internet Res SP - e37674 VL - 24 IS - 5 KW - COVID-19 KW - long COVID KW - post-COVID-19 syndrome KW - peer support KW - online health communities KW - self-help groups KW - internet KW - qualitative KW - interview KW - patient experience KW - digital health KW - digital peer support KW - online health N2 - Background: Long COVID is an emerging public health concern. A growing number of individuals are experiencing prolonged, multifaceted health challenges and accompanying social impacts after COVID-19 infections. Support services in the United Kingdom remain insufficient and fraught with complexity. Responding to persistent gaps in care, patients joined forces in online peer support groups. However, little is known about how these groups impact patients with long COVID and their lived experiences of the condition. Objective: The aim of this study is to explore the roles that online peer support groups take on and the impact they have on patients experiencing and recovering from long COVID in the United Kingdom. In doing so, this study aims to identify ways to inform future long COVID care, including online peer support and broader long COVID care structures. Methods: I conducted 11 semistructured interviews virtually on Zoom in July 2021. Participants had long COVID, were UK-based, and used long COVID online peer support groups. Topics discussed in interviews included what led participants to these groups, experiences within them, and feelings about the roles that the groups took on. I analyzed the results by manually conducting thematic analysis. Results: Long COVID online peer support groups had numerous roles, significantly impacting users. I identified 5 themes and 13 subthemes through thematic analysis. The identified themes were as follows: (1) filling professional care gaps, (2) societal awareness, (3) engagement behavior, (4) diversity, and (5) social connections. Given the void of professional support, those experiencing long COVID gained some benefit from these groups. However, participants emphasized notable concerns about the all-encompassing roles these groups embody and speculated over potential improvements. Conclusions: If used appropriately, online peer support groups could be immensely beneficial for patient well-being, beyond simply filling gaps in long COVID care. However, it appears many groups take on more than they can manage and become potentially harmful. Through prioritizing patient voices, long COVID care could be restructured to maximize peer support?s benefits within broader care structures. UR - https://www.jmir.org/2022/5/e37674 UR - http://dx.doi.org/10.2196/37674 UR - http://www.ncbi.nlm.nih.gov/pubmed/35468083 ID - info:doi/10.2196/37674 ER - TY - JOUR AU - Bizzotto, Nicole AU - Morlino, Susanna AU - Schulz, Johannes Peter PY - 2022/5/20 TI - Misinformation in Italian Online Mental Health Communities During the COVID-19 Pandemic: Protocol for a Content Analysis Study JO - JMIR Res Protoc SP - e35347 VL - 11 IS - 5 KW - online communities KW - social media KW - mental health KW - misinformation KW - COVID-19 KW - empowerment KW - content analysis N2 - Background: Social media platforms are widely used by people suffering from mental illnesses to cope with their conditions. One modality of coping with these conditions is navigating online communities where people can receive emotional support and informational advice. Benefits have been documented in terms of impact on health outcomes. However, the pitfalls are still unknown, as not all content is necessarily helpful or correct. Furthermore, the advent of the COVID-19 pandemic and related problems, such as worsening mental health symptoms, the dissemination of conspiracy narratives, and medical distrust, may have impacted these online communities. The situation in Italy is of particular interest, being the first Western country to experience a nationwide lockdown. Particularly during this challenging time, the beneficial role of community moderators with professional mental health expertise needs to be investigated in terms of uncovering misleading information and regulating communities. Objective: The aim of the proposed study is to investigate the potentially harmful content found in online communities for mental health symptoms in the Italian language. Besides descriptive information about the content that posts and comments address, this study aims to analyze the content from two viewpoints. The first one compares expert-led and peer-led communities, focusing on differences in misinformation. The second one unravels the impact of the COVID-19 pandemic, not by merely investigating differences in topics but also by investigating the needs expressed by community members. Methods: A codebook for the content analysis of Facebook communities has been developed, and a content analysis will be conducted on bundles of posts. Among 14 Facebook groups that were interested in participating in this study, two groups were selected for analysis: one was being moderated by a health professional (n=12,058 members) and one was led by peers (n=5598 members). Utterances from 3 consecutive calendar years will be studied by comparing the months from before the pandemic, the months during the height of the pandemic, and the months during the postpandemic phase (2019-2021). This method permits the identification of different types of misinformation and the context in which they emerge. Ethical approval was obtained by the Università della Svizzera italiana ethics committee. Results: The usability of the codebook was demonstrated with a pretest. Subsequently, 144 threads (1534 utterances) were coded by the two coders. Intercoder reliability was calculated on 293 units (19.10% of the total sample; Krippendorff ?=.94, range .72-1). Aside from a few analyses comparing bundles, individual utterances will constitute the unit of analysis in most cases. Conclusions: This content analysis will identify deleterious content found in online mental health support groups, the potential role of moderators in uncovering misleading information, and the impact of COVID-19 on the content. International Registered Report Identifier (IRRID): PRR1-10.2196/35347 UR - https://www.researchprotocols.org/2022/5/e35347 UR - http://dx.doi.org/10.2196/35347 UR - http://www.ncbi.nlm.nih.gov/pubmed/35594142 ID - info:doi/10.2196/35347 ER - TY - JOUR AU - Andreou, Andreas AU - Dhand, Amar AU - Vassilev, Ivaylo AU - Griffiths, Chris AU - Panzarasa, Pietro AU - De Simoni, Anna PY - 2022/5/17 TI - Understanding Online and Offline Social Networks in Illness Management of Older Patients With Asthma and Chronic Obstructive Pulmonary Disease: Mixed Methods Study Using Quantitative Social Network Assessment and Qualitative Analysis JO - JMIR Form Res SP - e35244 VL - 6 IS - 5 KW - social networks KW - asthma KW - COPD KW - self-management KW - elderly KW - online health communities KW - online forums KW - digital health KW - mobile phone N2 - Background: Individuals? social networks and social support are fundamental determinants of self-management and self-efficacy. In chronic respiratory conditions, social support can be promoted and optimized to facilitate the self-management of breathlessness. Objective: This study aimed to identify how online and offline social networks play a role in the health management of older patients with chronic respiratory conditions, explore the role of support from online peers in patients? self-management, and understand the barriers to and potential benefits of digital social interventions. Methods: We recruited participants from a hospital-run singing group to a workshop in London, the United Kingdom, and adapted PERSNET, a quantitative social network assessment tool. The second workshop was replaced by telephone interviews because of the COVID-19 lockdown. The transcripts were analyzed using thematic analysis. Results: A total of 7 participants (2/7, 29%, men and 5/7, 71%, women), with an age range of 64 to 81 years, produced network maps that comprised between 5 and 10 individuals, including family members, health care professionals, colleagues, activity groups, offline and online friends, and peers. The visual maps facilitated reflections and enhanced participants? understanding of the role of offline and online social networks in the management of chronic respiratory conditions. It also highlighted the work undertaken by the networks themselves in the self-management support. Participants with small, close-knit networks received physical, health, and emotional support, whereas those with more diverse and large networks benefited from accessing alternative and complementary sources of information. Participants in the latter type of network tended to communicate more openly and comfortably about their illness, shared the impact of their illness on their day-to-day life, and demonstrated distinct traits in terms of identity and perception of chronic disease. Participants described the potential benefits of expanding their networks to include online peers as sources of novel information, motivation, and access to supportive environments. Lack of technological skills, fear of being scammed, or preference for keeping illness-related problems for themselves and immediate family were reported by some as barriers to engaging with online peer support. Conclusions: In this small-scale study, the social network assessment tool proved feasible and acceptable. These data show the value of using a social network tool as a research tool that can help assess and understand network structure and engagement in the self-management support and could be developed into an intervention to support self-management. Patients? preferences to share illness experiences with their online peers, as well as the contexts in which this can be acceptable, should be considered when developing and offering digital social interventions. Future studies can explore the evolution of the social networks of older people with chronic illnesses to understand whether their willingness to engage with online peers can change over time. UR - https://formative.jmir.org/2022/5/e35244 UR - http://dx.doi.org/10.2196/35244 UR - http://www.ncbi.nlm.nih.gov/pubmed/35579933 ID - info:doi/10.2196/35244 ER - TY - JOUR AU - Cooray, Nipuna AU - Sun, Louise Si AU - Adams, Susan AU - Keay, Lisa AU - Nassar, Natasha AU - Brown, Julie PY - 2022/5/10 TI - Exploring Infant Fall Events Using Online Parenting Discussion Forums: Infodemiology Study JO - JMIR Pediatr Parent SP - e34413 VL - 5 IS - 2 KW - falls KW - child injury KW - online discussion forums N2 - Background: Falls represent the most common mechanism of injury requiring hospitalization among children under 12 months, and they commonly result in traumatic brain injury. Epidemiological studies exploring infant falls demonstrate the experienced burden, but they lack contextual information vital to the development of preventive interventions. Objective: The objective of this study was to examine contextual information for falls involving children under 12 months, using online parenting discussion forums. Methods: Online parenting forums provide an unobtrusive rich data source for collecting detailed information about fall events. Relevant discussions related to fall incidents were identified and downloaded using site-specific Google Search queries and a programming script. A qualitative descriptive approach was used to analyze the incidents and categorize contextual information into ?precursor events? and ?influencing factors? for infant falls. Results: We identified 461 infant fall incidents. Common fall mechanisms included falls from furniture, falls when being carried or supported by someone, falls from baby products, and falls on the same level. Across the spectrum of fall mechanisms, common precursor events were infant rolling off, infant being alone on furniture, product misuse, caretaker falling asleep while holding the infant, and caretaker tripping/slipping while carrying the infant. Common influencing factors were infant?s rapid motor development, lapses in caretaker attention, and trip hazards. Conclusions: The findings define targets for interventions to prevent infant falls and suggest that the most viable intervention approach may be to target parental behavior change. Online forums can provide rich information critical for preventive interventions aimed at changing behavior. UR - https://pediatrics.jmir.org/2022/2/e34413 UR - http://dx.doi.org/10.2196/34413 UR - http://www.ncbi.nlm.nih.gov/pubmed/35536607 ID - info:doi/10.2196/34413 ER - TY - JOUR AU - Kaushal, Aradhna AU - Bravo, Caroline AU - Duffy, Stephen AU - Lewins, Douglas AU - Möhler, Ralph AU - Raine, Rosalind AU - Vlaev, Ivo AU - Waller, Jo AU - von Wagner, Christian PY - 2022/5/9 TI - Developing Reporting Guidelines for Social Media Research (RESOME) by Using a Modified Delphi Method: Protocol for Guideline Development JO - JMIR Res Protoc SP - e31739 VL - 11 IS - 5 KW - social media KW - research design KW - web-based social networking KW - health behavior KW - health promotion KW - public health N2 - Background: Social media platforms, such as Facebook, Twitter, and Instagram, are being increasingly used to deliver public health interventions. Despite the high level of research interest, there is no consensus or guidance on how to report on social media interventions. Reporting guidelines that incorporate elements from behavior change theories and social media engagement frameworks could foster more robust evaluations that capture outcomes that have an impact on behavior change and engagement. Objective: The aim of this project is to develop, publish, and promote a list of items for our Reporting Guidelines for Social Media Research (RESOME) checklist. Methods: RESOME will be developed by using a modified Delphi approach wherein 2 rounds of questionnaires will be sent to experts and stakeholders. The questionnaires will ask them to rate their agreement with a series of statements until a level of consensus is reached. This will be followed by a web-based consensus meeting to finalize the reporting guidelines. After the consensus meeting, the reporting guidelines will be published in the form of a paper outlining the need for the new guidelines and how the guidelines were developed, along with the finalized checklist for reporting. Prior to publication, the guidelines will be piloted to check for understanding and simplify the language used, if necessary. Results: The first draft of RESOME has been developed. Round 1 of the Delphi survey took place between July and December 2021. Round 2 is due to take place in February 2022, and the web-based consensus meeting will be scheduled for the spring of 2022. Conclusions: Developing RESOME has the potential to contribute to improved reporting, and such guidelines will make it easier to assess the effectiveness of social media interventions. Future work will be needed to evaluate our guidelines? usefulness and practicality. International Registered Report Identifier (IRRID): PRR1-10.2196/31739 UR - https://www.researchprotocols.org/2022/5/e31739 UR - http://dx.doi.org/10.2196/31739 UR - http://www.ncbi.nlm.nih.gov/pubmed/35532999 ID - info:doi/10.2196/31739 ER - TY - JOUR AU - Dunn, Sheila AU - Munro, Sarah AU - Devane, Courtney AU - Guilbert, Edith AU - Jeong, Dahn AU - Stroulia, Eleni AU - Soon, A. Judith AU - Norman, V. Wendy PY - 2022/5/5 TI - A Virtual Community of Practice to Support Physician Uptake of a Novel Abortion Practice: Mixed Methods Case Study JO - J Med Internet Res SP - e34302 VL - 24 IS - 5 KW - mifepristone KW - abortion KW - community of practice KW - virtual community of practice KW - diffusion of innovation KW - learning community N2 - Background: Virtual communities of practice (VCoPs) have been used to support innovation and quality in clinical care. The drug mifepristone was introduced in Canada in 2017 for medical abortion. We created a VCoP to support implementation of mifepristone abortion practice across Canada. Objective: The aim of this study was to describe the development and use of the Canadian Abortion Providers Support-Communauté de pratique canadienne sur l?avortement (CAPS-CPCA) VCoP and explore physicians? experience with CAPS-CPCA and their views on its value in supporting implementation. Methods: This was a mixed methods intrinsic case study of Canadian health care providers? use and physicians? perceptions of the CAPS-CPCA VCoP during the first 2 years of a novel practice. We sampled both physicians who joined the CAPS-CPCA VCoP and those who were interested in providing the novel practice but did not join the VCoP. We designed the VCoP features to address known and discovered barriers to implementation of medication abortion in primary care. Our secure web-based platform allowed asynchronous access to information, practice resources, clinical support, discussion forums, and email notices. We collected data from the platform and through surveys of physician members as well as interviews with physician members and nonmembers. We analyzed descriptive statistics for website metrics, physicians? characteristics and practices, and their use of the VCoP. We used qualitative methods to explore the physicians? experiences and perceptions of the VCoP. Results: From January 1, 2017, to June 30, 2019, a total of 430 physicians representing all provinces and territories in Canada joined the VCoP and 222 (51.6%) completed a baseline survey. Of these 222 respondents, 156 (70.3%) were family physicians, 170 (80.2%) were women, and 78 (35.1%) had no prior abortion experience. In a survey conducted 12 months after baseline, 77.9% (120/154) of the respondents stated that they had provided mifepristone abortion and 33.9% (43/127) said the VCoP had been important or very important. Logging in to the site was burdensome for some, but members valued downloadable resources such as patient information sheets, consent forms, and clinical checklists. They found email announcements helpful for keeping up to date with changing regulations. Few asked clinical questions to the VCoP experts, but physicians felt that this feature was important for isolated or rural providers. Information collected through member polls about health system barriers to implementation was used in the project?s knowledge translation activities with policy makers to mitigate these barriers. Conclusions: A VCoP developed to address known and discovered barriers to uptake of a novel medication abortion method engaged physicians from across Canada and supported some, including those with no prior abortion experience, to implement this practice. International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2018-028443 UR - https://www.jmir.org/2022/5/e34302 UR - http://dx.doi.org/10.2196/34302 UR - http://www.ncbi.nlm.nih.gov/pubmed/35511226 ID - info:doi/10.2196/34302 ER - TY - JOUR AU - Nozawa, Kyosuke AU - Ishii, Ayaka AU - Asaoka, Hiroki AU - Iwanaga, Mai AU - Kumakura, Yousuke AU - Oyabu, Yuri AU - Shinozaki, Tomohiro AU - Imamura, Kotaro AU - Kawakami, Norito AU - Miyamoto, Yuki PY - 2022/4/26 TI - Effectiveness of an Online Peer Gatekeeper Training Program for Postsecondary Students on Suicide Prevention in Japan: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e34832 VL - 11 IS - 4 KW - gatekeeper KW - suicide prevention KW - mental health KW - youth KW - school KW - student KW - peer support KW - depression KW - self-efficacy KW - suicide KW - prevention KW - online training KW - online program KW - protocol KW - RCT KW - control trial N2 - Background: Postsecondary student suicide is one of Japan?s most severe public health problems. Gatekeeper training (GKT) programs are a generally recommended suicide prevention intervention in Japan. For suicide countermeasures, an online program tailored to students may enhance self-efficacy as a gatekeeper. Objective: This study aims to describe a research protocol to investigate the effect of a newly developed internet-delivered online peer GKT program to improve postsecondary student self-efficacy as gatekeepers for suicide countermeasures in Japan. Methods: This study is a 2-arm, parallel, randomized controlled trial with a 1:1 (intervention: waiting list) allocation. Participants (n=320) will be recruited, and those who meet the inclusion criteria will be randomly allocated to the intervention or waiting list control group. An approximately 85-minute, 6-section, internet-based gatekeeper program for postsecondary students has been developed that includes videos to help participants acquire skills as gatekeepers. The intervention group will complete the program within 10 days. The primary outcome, self-efficacy as a gatekeeper, is measured using the Gatekeeper Self-Efficacy Scale at baseline, immediately after taking the program, and 2 months after the survey after completing the program follow-up. To compare the primary outcomes, a t test, where the significance level is 5% (2-sided), will be used to test the intervention effect on an intention-to-treat basis. Results: The study was at the stage of data collection at the time of submission. We recruited participants for this study during August and September 2021, and data collection will continue until December 2021. The data analysis related to the primary outcome will start in December 2021, and we hope to publish the results in 2022 or 2023. Conclusions: This is the first study to investigate the effectiveness of an online GKT program for postsecondary students to improve self-efficacy as a gatekeeper using a randomized controlled trial design. The study will explore the potential of an online peer gatekeeper program for postsecondary students that can be disseminated online to a large number of students with minimal cost. Trial Registration: University Hospital Medical Information Network Clinical Trials Registry UMIN000045325; https://upload.umin.ac.jp/cgi-open-bin/ctr/ctr_view.cgi?recptno=R000051685 International Registered Report Identifier (IRRID): DERR1-10.2196/34832 UR - https://www.researchprotocols.org/2022/4/e34832 UR - http://dx.doi.org/10.2196/34832 UR - http://www.ncbi.nlm.nih.gov/pubmed/35471412 ID - info:doi/10.2196/34832 ER - TY - JOUR AU - Rajanala, Susruthi AU - Wilson, K. Jennifer AU - Mitchell, D. Paul AU - Garvey, C. Katharine AU - Fishman, N. Laurie PY - 2022/4/25 TI - Contrasting Social Media Use Between Young Adults With Inflammatory Bowel Disease and Type 1 Diabetes: Cross-sectional Study JO - JMIR Pediatr Parent SP - e34466 VL - 5 IS - 2 KW - social media KW - inflammatory bowel disease KW - type 1 diabetes KW - internet KW - young adult KW - children KW - Instagram KW - Facebook KW - type 1 KW - diabetes N2 - Background: Social media is used by young adult patients for social connection and self-identification. Objective: This study aims to compare the social media habits of young adults with inflammatory bowel disease (IBD) and type 1 diabetes (T1D). Methods: This is a cross-sectional study of subjects from Boston Children?s Hospital outpatient IBD and diabetes clinics. Patients above 18 years of age were invited to complete a brief anonymous survey, which asked about the various ways they use several social media platforms. Results: Responses were received from 108 patients (92.5% response rate), evenly split across disease type. We found that 83% of participants spent at least 30 minutes per day on social media, most commonly on Instagram and Facebook. Although the content varied based on the platform, patients with IBD posted or shared content related to their disease significantly less than those with T1D (23% vs 38%, P=.02). Among Instagram users, patients with IBD were less likely to engage with support groups (22% vs 56%, P=.04). Among Twitter users, patients with IBD were less likely to seek disease information (77% vs 29%, P=.005). Among Facebook users, patients with IBD were less likely to post about research and clinical trials (31% vs 65%, P=.04) or for information seeking (49% vs 87%, P=.003). Patients with IBD were also less likely to share their diagnosis with friends or family in person. Conclusions: Young adults with IBD were less willing to share their diagnosis and post about or explore the disease on social media compared to those with T1D. This could lead to a sense of isolation and should be further explored. UR - https://pediatrics.jmir.org/2022/2/e34466 UR - http://dx.doi.org/10.2196/34466 UR - http://www.ncbi.nlm.nih.gov/pubmed/35139484 ID - info:doi/10.2196/34466 ER - TY - JOUR AU - Tour, K. Selina AU - Thompson, Andrew AU - Howard, A. Ruth AU - Larkin, Michael PY - 2022/4/22 TI - Experiences of Blogging About Visible and Long-term Skin Conditions: Interpretative Phenomenological Analysis JO - JMIR Dermatol SP - e29980 VL - 5 IS - 2 KW - peer support KW - blogging KW - psychodermatology KW - stigmatisation KW - emotional disclosure KW - self-management KW - qualitative research KW - interpretative phenomenological analysis N2 - Background: Skin conditions can detract from people?s quality of life, much like conditions such as cancer, chronic pain, and depression. Visible skin conditions can lead to risk of stigmatization. It is acknowledged that there is a lack of available psychosocial support for people living with chronic skin conditions. One way in which individuals with long-term conditions are self-managing and providing peer support is through blogging and exchanging information on the web. To date, no research has specifically investigated how individuals with skin conditions experience the use blogging for self-management. Objective: This study sought to investigate the experiences of individuals with visible, long-term skin conditions when blogging about their conditions. Methods: A systematic blog search and a short survey were used for recruitment. A total of 4 participants took part in email interviews, which were analyzed using interpretative phenomenological analysis (IPA). Skin conditions included alopecia, psoriasis, and hirsutism. The content of these individuals? blogs was also analyzed using a qualitative template method derived from the IPA analysis. Results: The interviews and accounts revealed a clear sense of uncertainty about the course of the bloggers? skin conditions. This appeared to be associated with feelings of distress and isolation, searching for treatments, and ultimately a sense of defeat. The data revealed that blogging provided a space where this sense of defeat was managed and challenged. Posting on the web facilitated connection with others and enabled support networks to be established that assisted in challenging the feelings of isolation experienced. The data demonstrate the important role that blogging played for these participants in developing a sense of acceptance of their condition. Conclusions: Blogging may provide a way for individuals to self-manage distress associated with visible skin conditions. It may provide similar benefits to those known to be derived from emotional disclosure that occurs during writing, with an added peer support dimension. Blogging has occurred naturalistically on web-based forums, and this study demonstrates how this form of interaction may warrant adaptation for use with web-based psychosocial interventions for people living with skin conditions. This study had a limited sample of 4 bloggers; therefore, further exploration would be needed to consider the utility of this approach. UR - https://derma.jmir.org/2022/2/e29980 UR - http://dx.doi.org/10.2196/29980 UR - http://www.ncbi.nlm.nih.gov/pubmed/37632861 ID - info:doi/10.2196/29980 ER - TY - JOUR AU - Thaker, Khushboo AU - Chi, Yu AU - Birkhoff, Susan AU - He, Daqing AU - Donovan, Heidi AU - Rosenblum, Leah AU - Brusilovsky, Peter AU - Hui, Vivian AU - Lee, Ji Young PY - 2022/4/12 TI - Exploring Resource-Sharing Behaviors for Finding Relevant Health Resources: Analysis of an Online Ovarian Cancer Community JO - JMIR Cancer SP - e33110 VL - 8 IS - 2 KW - online health community KW - resource sharing KW - link sharing KW - topical relevance KW - information seeking KW - ovarian cancer KW - user behavior modeling N2 - Background: Online health communities (OHCs) provide patients and survivors of ovarian cancer (OvCa) and their caregivers with help beyond traditional support channels, such as health care providers and clinicians. OvCa OHCs promote connections and exchanges of information among users with similar experiences. Users often exchange information, which leads to the sharing of resources in the form of web links. Although OHCs are important platforms for health management, concerns exist regarding the quality and relevance of shared resources. Previous studies have examined different aspects of resource-sharing behaviors, such as the purpose of sharing, the type of shared resources, and peer user reactions to shared resources in OHCs to evaluate resource exchange scenarios. However, there is a paucity of research examining whether resource-sharing behaviors can ultimately determine the relevance of shared resources. Objective: This study aimed to examine the association between OHC resource-sharing behaviors and the relevance of shared resources. We analyzed three aspects of resource-sharing behaviors: types of shared resources, purposes of sharing resources, and OHC users? reactions to shared resources. Methods: Using a retrospective design, data were extracted from the National Ovarian Cancer Coalition discussion forum. The relevance of a resource was classified into three levels: relevant, partially relevant, and not relevant. Resource-sharing behaviors were identified through manual content analysis. A significance test was performed to determine the association between resource relevance and resource-sharing behaviors. Results: Approximately 48.3% (85/176) of the shared resources were identified as relevant, 29.5% (52/176) as partially relevant, and 22.2% (39/176) as irrelevant. The study established a significant association between the types of shared resources (?218=33.2; P<.001) and resource relevance (through chi-square tests of independence). Among the types of shared resources, health consumer materials such as health news (P<.001) and health organizations (P=.02) exhibited significantly more relevant resources. Patient educational materials (P<.001) and patient-generated resources (P=.01) were more significantly associated with partially relevant and irrelevant resources, respectively. Expert health materials, including academic literature, were only shared a few times but had significantly (P<.001) more relevant resources. A significant association (?210=22.9; P<.001) was also established between the purpose of resource sharing and overall resource relevance. Resources shared with the purpose of providing additional readings (P=.01) and pointing to resources (P=.03) had significantly more relevant resources, whereas subjects for discussion and staying connected did not include any relevant shared resources. Conclusions: The associations found between resource-sharing behaviors and the relevance of these resources can help in collecting relevant resources, along with the corresponding information needs from OvCa OHCs, on a large scale through automation. The results from this study can be leveraged to prioritize the resources required by survivors of OvCa and their caregivers, as well as to automate the search for relevant shared resources in OvCa OHCs. UR - https://cancer.jmir.org/2022/2/e33110 UR - http://dx.doi.org/10.2196/33110 UR - http://www.ncbi.nlm.nih.gov/pubmed/35258465 ID - info:doi/10.2196/33110 ER - TY - JOUR AU - Manning Hutson, Michelle AU - Hosking, M. Sarah AU - Mantalvanos, Soula AU - Berk, Michael AU - Pasco, Julie AU - Dunning, Trisha PY - 2022/4/7 TI - What Injured Workers With Complex Claims Look For in Online Communities: Netnographic Analysis JO - J Med Internet Res SP - e17180 VL - 24 IS - 4 KW - work-related injury KW - care coordination KW - case management KW - netnography N2 - Background: Improved understanding of social constructs around injury may help insurance case managers to understand how best to support people after injury. Objective: This study sought to explore what people who sustain work-related injuries may seek from online communities. The study highlights potential opportunities for improved engagement with insurance case management practice. Methods: An observational netnographic analysis was undertaken on anonymous, publicly available messages posted on Australian message boards. All research data were drawn from anonymous, online communities. A person (author SM) with experience of making a claim through an Australian workers? compensation system and online engagement was involved in study conception, design, and analysis. Data were analyzed using NVivo12 in an iterative, multistage process including coding, journaling, and member checking. A total of 141 people were engaged in discussion across 47 threads housed on 4 Australian forums. Results: In this qualitative study, themes emerged from the data, describing how injured workers use online communities to help make decisions, get support, and solve problems. The key motivators for action and engagement were seeking information, connection, or justice. Establishment of relationships was a key mediator of each of these parameters. Conclusions: Some work-related injuries may involve medical and medicolegal complexity as well as changed lifestyle and routine during convalescence and recovery. The mechanism used by some injured workers to seek information and problem solve suggests a capacity for self-management and self-care after work-related injury. Netnography provides information on a community that may not regularly engage with research because of the complexity of their situation and their vulnerability. UR - https://www.jmir.org/2022/4/e17180 UR - http://dx.doi.org/10.2196/17180 UR - http://www.ncbi.nlm.nih.gov/pubmed/35389358 ID - info:doi/10.2196/17180 ER - TY - JOUR AU - O'Sullivan, Shaunagh AU - Schmaal, Lianne AU - D'Alfonso, Simon AU - Toenders, Jo Yara AU - Valentine, Lee AU - McEnery, Carla AU - Bendall, Sarah AU - Nelson, Barnaby AU - Gleeson, F. John AU - Alvarez-Jimenez, Mario PY - 2022/4/7 TI - Characterizing Use of a Multicomponent Digital Intervention to Predict Treatment Outcomes in First-Episode Psychosis: Cluster Analysis JO - JMIR Ment Health SP - e29211 VL - 9 IS - 4 KW - digital intervention KW - digital health KW - youth mental health KW - psychotic disorders KW - clustering KW - usage metrics KW - log data KW - social networking N2 - Background: Multicomponent digital interventions offer the potential for tailored and flexible interventions that aim to address high attrition rates and increase engagement, an area of concern in digital mental health. However, increased flexibility in use makes it difficult to determine which components lead to improved treatment outcomes. Objective: This study aims to identify user profiles on Horyzons, an 18-month digital relapse prevention intervention for first-episode psychosis that incorporates therapeutic content and social networking, along with clinical, vocational, and peer support, and to examine the predictive value of these user profiles for treatment outcomes. A secondary objective is to compare each user profile with young people receiving treatment as usual (TAU). Methods: Participants comprised 82 young people (aged 16-27 years) with access to Horyzons and 84 receiving TAU, recovering from first-episode psychosis. In addition, 6-month use data from the therapy and social networking components of Horyzons were used as features for K-means clustering for joint trajectories to identify user profiles. Social functioning, psychotic symptoms, depression, and anxiety were assessed at baseline and 6-month follow-up. General linear mixed models were used to examine the predictive value of user profiles for treatment outcomes and between each user profile with TAU. Results: A total of 3 user profiles were identified based on the following system use metrics: low use, maintained use of social components, and maintained use of both therapy and social components. The maintained therapy and social group showed improvements in social functioning (F2,51=3.58; P=.04), negative symptoms (F2,51=4.45; P=.02), and overall psychiatric symptom severity (F2,50=3.23; P=.048) compared with the other user profiles. This group also showed improvements in social functioning (F1,62=4.68; P=.03), negative symptoms (F1,62=14.61; P<.001), and overall psychiatric symptom severity (F1,63=5.66; P=.02) compared with the TAU group. Conversely, the maintained social group showed increases in anxiety compared with the TAU group (F1,57=7.65; P=.008). No differences were found between the low use group and the TAU group on treatment outcomes. Conclusions: Continued engagement with both therapy and social components might be key in achieving long-term recovery. Maintained social use and low use outcomes were broadly comparable with TAU, emphasizing the importance of maintaining engagement for improved treatment outcomes. Although the social network may be a key ingredient to increase sustained engagement, as users engaged with this more consistently, it should be leveraged as a tool to engage young people with therapeutic content to bring about social and clinical benefits. UR - https://mental.jmir.org/2022/4/e29211 UR - http://dx.doi.org/10.2196/29211 UR - http://www.ncbi.nlm.nih.gov/pubmed/35389351 ID - info:doi/10.2196/29211 ER - TY - JOUR AU - Cooper, Drew AU - Ubben, Tebbe AU - Knoll, Christine AU - Ballhausen, Hanne AU - O'Donnell, Shane AU - Braune, Katarina AU - Lewis, Dana PY - 2022/3/31 TI - Open-source Web Portal for Managing Self-reported Data and Real-world Data Donation in Diabetes Research: Platform Feasibility Study JO - JMIR Diabetes SP - e33213 VL - 7 IS - 1 KW - diabetes KW - type 1 diabetes KW - automated insulin delivery KW - diabetes technology KW - open-source KW - patient-reported outcomes KW - real-world data KW - research methods KW - mixed methods KW - insulin KW - digital health KW - web portal N2 - Background: People with diabetes and their support networks have developed open-source automated insulin delivery systems to help manage their diabetes therapy, as well as to improve their quality of life and glycemic outcomes. Under the hashtag #WeAreNotWaiting, a wealth of knowledge and real-world data have been generated by users of these systems but have been left largely untapped by research; opportunities for such multimodal studies remain open. Objective: We aimed to evaluate the feasibility of several aspects of open-source automated insulin delivery systems including challenges related to data management and security across multiple disparate web-based platforms and challenges related to implementing follow-up studies. Methods: We developed a mixed methods study to collect questionnaire responses and anonymized diabetes data donated by participants?which included adults and children with diabetes and their partners or caregivers recruited through multiple diabetes online communities. We managed both front-end participant interactions and back-end data management with our web portal (called the Gateway). Participant questionnaire data from electronic data capture (REDCap) and personal device data aggregation (Open Humans) platforms were pseudonymously and securely linked and stored within a custom-built database that used both open-source and commercial software. Participants were later given the option to include their health care providers in the study to validate their questionnaire responses; the database architecture was designed specifically with this kind of extensibility in mind. Results: Of 1052 visitors to the study landing page, 930 participated and completed at least one questionnaire. After the implementation of health care professional validation of self-reported clinical outcomes to the study, an additional 164 individuals visited the landing page, with 142 completing at least one questionnaire. Of the optional study elements, 7 participant?health care professional dyads participated in the survey, and 97 participants who completed the survey donated their anonymized medical device data. Conclusions: The platform was accessible to participants while maintaining compliance with data regulations. The Gateway formalized a system of automated data matching between multiple data sets, which was a major benefit to researchers. Scalability of the platform was demonstrated with the later addition of self-reported data validation. This study demonstrated the feasibility of custom software solutions in addressing complex study designs. The Gateway portal code has been made available open-source and can be leveraged by other research groups. UR - https://diabetes.jmir.org/2022/1/e33213 UR - http://dx.doi.org/10.2196/33213 UR - http://www.ncbi.nlm.nih.gov/pubmed/35357312 ID - info:doi/10.2196/33213 ER - TY - JOUR AU - Lok, YW Kris AU - Ko, WT Rachel AU - Fan, SL Heidi AU - Chau, PH AU - Wong, YH Janet AU - Wang, MP AU - Tsang, Vicky PY - 2022/3/9 TI - Feasibility and Acceptability of an Online WhatsApp Support Group on Breastfeeding: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e32338 VL - 11 IS - 3 KW - mHealth KW - breastfeeding KW - peer support KW - mobile health KW - parenting KW - instant messaging KW - online support KW - women's health KW - postpartum health KW - postpartum support N2 - Background: Mobile health, the use of mobile technology in delivering health care, has been found to be effective in changing health behaviors, including improving breastfeeding practices in postpartum women. With the widespread use of smartphones and instant messaging apps in Hong Kong, instant messaging groups could be a useful channel for delivering breastfeeding peer support. Objective: The aim of this paper is to study the feasibility and acceptability of an online instant messaging peer support group by trained peer counselors on improving breastfeeding outcome in primiparous women in Hong Kong. Methods: A two-arm, assessor-blind, randomized controlled feasibility study will be conducted on 40 primiparous women with the intention to breastfeed. Participants are recruited from the antenatal obstetrics and gynecology clinic of a public hospital in Hong Kong and randomly assigned at a 1:1 ratio to either intervention or control group. The intervention group receives peer support in an online instant messaging group with trained peer counselors on top of standard care, whereas the control group receives standard care. Breastfeeding outcome will be assessed for 6 months post partum or until weaned. The breastfeeding status, the proportion and duration of exclusive and any breastfeeding in each group, and the self-efficacy and attitude of participants will be assessed. The feasibility and acceptability of the study would also be assessed in preparation for a full randomized controlled trial. Results: This study (protocol version 1 dated January 5, 2021) has been reviewed and approved by the institutional review board of the University of Hong Kong, Hospital Authority Hong Kong West Cluster (reference UW 21-039), on January 26, 2021. Data collection is ongoing and expected to be completed in December 2021. The findings will be updated on clinical trial registry and disseminated in peer-reviewed journals. Conclusions: This study aims to assess the feasibility and effectiveness of an online instant messaging peer support group in improving the breastfeeding outcome of primiparous women in Hong Kong. Its findings could inform the feasibility of a full-scale trial with this intervention design. Trial Registration: ClinicalTrials.gov NCT04826796; https://clinicaltrials.gov/ct2/show/NCT04826796 International Registered Report Identifier (IRRID): DERR1-10.2196/32338 UR - https://www.researchprotocols.org/2022/3/e32338 UR - http://dx.doi.org/10.2196/32338 UR - http://www.ncbi.nlm.nih.gov/pubmed/35262504 ID - info:doi/10.2196/32338 ER - TY - JOUR AU - Li, Chuqin AU - Ademiluyi, Adesoji AU - Ge, Yaorong AU - Park, Albert PY - 2022/3/7 TI - Using Social Media to Understand Web-Based Social Factors Concerning Obesity: Systematic Review JO - JMIR Public Health Surveill SP - e25552 VL - 8 IS - 3 KW - obesity KW - web-based social factors KW - systematic review KW - social-ecological model N2 - Background: Evidence in the literature surrounding obesity suggests that social factors play a substantial role in the spread of obesity. Although social ties with a friend who is obese increase the probability of becoming obese, the role of social media in this dynamic remains underexplored in obesity research. Given the rapid proliferation of social media in recent years, individuals socialize through social media and share their health-related daily routines, including dieting and exercising. Thus, it is timely and imperative to review previous studies focused on social factors in social media and obesity. Objective: This study aims to examine web-based social factors in relation to obesity research. Methods: We conducted a systematic review. We searched PubMed, Association for Computing Machinery, and ScienceDirect for articles published by July 5, 2019. Web-based social factors that are related to obesity behaviors were studied and analyzed. Results: In total, 1608 studies were identified from the selected databases. Of these 1608 studies, 50 (3.11%) studies met the eligibility criteria. In total, 10 types of web-based social factors were identified, and a socioecological model was adopted to explain their potential impact on an individual from varying levels of web-based social structure to social media users? connection to the real world. Conclusions: We found 4 levels of interaction in social media. Gender was the only factor found at the individual level, and it affects user?s web-based obesity-related behaviors. Social support was the predominant factor identified, which benefits users in their weight loss journey at the interpersonal level. Some factors, such as stigma were also found to be associated with a healthy web-based social environment. Understanding the effectiveness of these factors is essential to help users create and maintain a healthy lifestyle. UR - https://publichealth.jmir.org/2022/3/e25552 UR - http://dx.doi.org/10.2196/25552 UR - http://www.ncbi.nlm.nih.gov/pubmed/35254279 ID - info:doi/10.2196/25552 ER - TY - JOUR AU - Gabarron, Elia AU - Dechsling, Anders AU - Skafle, Ingjerd AU - Nordahl-Hansen, Anders PY - 2022/3/7 TI - Discussions of Asperger Syndrome on Social Media: Content and Sentiment Analysis on Twitter JO - JMIR Form Res SP - e32752 VL - 6 IS - 3 KW - social media KW - autism spectrum disorder KW - health literacy KW - famous persons KW - Asperger KW - Elon Musk KW - twitter KW - tweets KW - mental health KW - autism KW - sentiment analysis N2 - Background: On May 8, 2021, Elon Musk, a well-recognized entrepreneur and business magnate, revealed on a popular television show that he has Asperger syndrome. Research has shown that people?s perceptions of a condition are modified when influential individuals in society publicly disclose their diagnoses. It was anticipated that Musk's disclosure would contribute to discussions on the internet about the syndrome, and also to a potential change in the perception of this condition. Objective: The objective of this study was to compare the types of information contained in popular tweets about Asperger syndrome as well as their engagement and sentiment before and after Musk?s disclosure. Methods: We extracted tweets that were published 1 week before and after Musk's disclosure that had received >30 likes and included the terms ?Aspergers? or ?Aspie.? The content of each post was classified by 2 independent coders as to whether the information provided was valid, contained misinformation, or was neutral. Furthermore, we analyzed the engagement on these posts and the expressed sentiment by using the AFINN sentiment analysis tool. Results: We extracted a total of 227 popular tweets (34 posted the week before Musk?s announcement and 193 posted the week after). We classified 210 (92.5%) of the tweets as neutral, 13 (5.7%) tweets as informative, and 4 (1.8%) as containing misinformation. Both informative and misinformative tweets were posted after Musk?s disclosure. Popular tweets posted before Musk?s disclosure were significantly more engaging (received more comments, retweets, and likes) than the tweets posted the week after. We did not find a significant difference in the sentiment expressed in the tweets posted before and after the announcement. Conclusions: The use of social media platforms by health authorities, autism associations, and other stakeholders has the potential to increase the awareness and acceptance of knowledge about autism and Asperger syndrome. When prominent figures disclose their diagnoses, the number of posts about their particular condition tends to increase and thus promote a potential opportunity for greater outreach to the general public about that condition. UR - https://formative.jmir.org/2022/3/e32752 UR - http://dx.doi.org/10.2196/32752 UR - http://www.ncbi.nlm.nih.gov/pubmed/35254265 ID - info:doi/10.2196/32752 ER - TY - JOUR AU - Arshonsky, Josh AU - Krawczyk, Noa AU - Bunting, M. Amanda AU - Frank, David AU - Friedman, R. Samuel AU - Bragg, A. Marie PY - 2022/3/3 TI - Informal Coping Strategies Among People Who Use Opioids During COVID-19: Thematic Analysis of Reddit Forums JO - JMIR Form Res SP - e32871 VL - 6 IS - 3 KW - opioid use KW - Reddit KW - coping strategies KW - COVID-19 KW - opioid KW - drug KW - coping KW - social media KW - strategy KW - content analysis KW - abstain KW - addiction KW - data mining KW - support N2 - Background: The COVID-19 pandemic has transformed how people seeking to reduce opioid use access treatment services and navigate efforts to abstain from using opioids. Social distancing policies have drastically reduced access to many forms of social support, but they may have also upended some perceived barriers to reducing or abstaining from opioid use. Objective: This qualitative study aims to identify informal coping strategies for reducing and abstaining from opioid use among Reddit users who have posted in opioid-related subreddits at the beginning of the COVID-19 pandemic. Methods: We extracted data from 2 major opioid-related subreddits. Thematic data analysis was used to evaluate subreddit posts dated from March 5 to May 13, 2020, that referenced COVID-19 and opioid use, resulting in a final sample of 300 posts that were coded and analyzed. Results: Of the 300 subreddit posts, 100 (33.3%) discussed at least 1 type of informal coping strategy. Those strategies included psychological and behavioral coping skills, adoption of healthy habits, and use of substances to manage withdrawal symptoms. In addition, 12 (4%) subreddit posts explicitly mentioned using social distancing as an opportunity for cessation of or reduction in opioid use. Conclusions: Reddit discussion forums have provided a community for people to share strategies for reducing opioid use and support others during the COVID-19 pandemic. Future research needs to assess the impact of COVID-19 on opioid use behaviors, especially during periods of limited treatment access and isolation, as these can inform future efforts in curbing the opioid epidemic and other substance-related harms. UR - https://formative.jmir.org/2022/3/e32871 UR - http://dx.doi.org/10.2196/32871 UR - http://www.ncbi.nlm.nih.gov/pubmed/35084345 ID - info:doi/10.2196/32871 ER - TY - JOUR AU - Willis, Erin AU - Delbaere, Marjorie PY - 2022/3/1 TI - Patient Influencers: The Next Frontier in Direct-to-Consumer Pharmaceutical Marketing JO - J Med Internet Res SP - e29422 VL - 24 IS - 3 KW - social media KW - influencers KW - health KW - pharmaceutical marketing KW - direct-to-consumer advertising KW - relationship marketing KW - marketing KW - advertising KW - pharmaceuticals KW - ethics UR - https://www.jmir.org/2022/3/e29422 UR - http://dx.doi.org/10.2196/29422 UR - http://www.ncbi.nlm.nih.gov/pubmed/35230241 ID - info:doi/10.2196/29422 ER - TY - JOUR AU - Liu, Danxia AU - Feng, Lin Xing AU - Ahmed, Farooq AU - Shahid, Muhammad AU - Guo, Jing PY - 2022/3/1 TI - Detecting and Measuring Depression on Social Media Using a Machine Learning Approach: Systematic Review JO - JMIR Ment Health SP - e27244 VL - 9 IS - 3 KW - depression KW - machine learning KW - social media N2 - Background: Detection of depression gained prominence soon after this troublesome disease emerged as a serious public health concern worldwide. Objective: This systematic review aims to summarize the findings of previous studies concerning applying machine learning (ML) methods to text data from social media to detect depressive symptoms and to suggest directions for future research in this area. Methods: A bibliographic search was conducted for the period of January 1990 to December 2020 in Google Scholar, PubMed, Medline, ERIC, PsycINFO, and BioMed. Two reviewers retrieved and independently assessed the 418 studies consisting of 322 articles identified through database searching and 96 articles identified through other sources; 17 of the studies met the criteria for inclusion. Results: Of the 17 studies, 10 had identified depression based on researcher-inferred mental status, 5 had identified it based on users? own descriptions of their mental status, and 2 were identified based on community membership. The ML approaches of 13 of the 17 studies were supervised learning approaches, while 3 used unsupervised learning approaches; the remaining 1 study did not describe its ML approach. Challenges in areas such as sampling, optimization of approaches to prediction and their features, generalizability, privacy, and other ethical issues call for further research. Conclusions: ML approaches applied to text data from users on social media can work effectively in depression detection and could serve as complementary tools in public mental health practice. UR - https://mental.jmir.org/2022/3/e27244 UR - http://dx.doi.org/10.2196/27244 UR - http://www.ncbi.nlm.nih.gov/pubmed/35230252 ID - info:doi/10.2196/27244 ER - TY - JOUR AU - Nitiema, Pascal PY - 2022/2/25 TI - Telehealth Before and During the COVID-19 Pandemic: Analysis of Health Care Workers' Opinions JO - J Med Internet Res SP - e29519 VL - 24 IS - 2 KW - telehealth KW - telemedicine KW - COVID-19 KW - pandemic KW - physical examination KW - sentiment score KW - structural topic modeling KW - opinion KW - health care worker KW - social media KW - discussion N2 - Background: The COVID-19 pandemic and the lockdowns for controlling the spread of infection have led to a surge in telehealth adoption by many health care organizations. It is unclear how this pandemic has impacted health professionals? view about telehealth. The analysis of textual data, such as comments posted on a discussion forum, can uncover information that may not be captured by a structured survey. Objective: This study aims to examine the opinions of health care workers about telehealth services during the time frame of March 2013-December 2020. Methods: Comments about telehealth posted by health care workers from at least 46 countries were collected from an online discussion forum dedicated to health professionals. The analysis included the computation of sentiment scores from the textual data and the use of structural topic modeling to identify the topics of discussions as well as the factors that may be associated with the prevalence of these topics. Results: The analysis of the comments revealed positive opinions about the perceived benefits of telehealth services before and during the pandemic, especially the ability to reach patients who cannot come to the health facility for diverse reasons. However, opinions about these benefits were less positive during the pandemic compared to the prepandemic period. Specific issues raised during the pandemic included technical difficulties encountered during telehealth sessions and the inability to perform certain care routines through telehealth platforms. Although comments on the quality of care provided through telehealth were associated with a negative sentiment score overall, the average score was less negative during the pandemic compared to the prepandemic period, signaling a shift in opinion about the quality of telehealth services. In addition, the analysis uncovered obstacles to the adoption of telehealth, including the absence of adequate legal dispositions for telehealth services and issues regarding the payment of these services by health insurance organizations. Conclusions: Enhancing the adoption of telehealth services beyond the pandemic requires addressing issues related to the quality of care, payment of services, and legal dispositions for delivering these services. UR - https://www.jmir.org/2022/2/e29519 UR - http://dx.doi.org/10.2196/29519 UR - http://www.ncbi.nlm.nih.gov/pubmed/34978532 ID - info:doi/10.2196/29519 ER - TY - JOUR AU - Ng, H. Ashley AU - Greenwood, A. Deborah AU - Iacob, Eli AU - Allen, A. Nancy AU - Ferrer, Mila AU - Rodriguez, Bruno AU - Litchman, L. Michelle PY - 2022/2/24 TI - Examining a Continuous Glucose Monitoring Plus Online Peer Support Community Intervention to Support Hispanic Adults With Type 2 Diabetes: Protocol for a Mixed Methods Feasibility Study JO - JMIR Res Protoc SP - e31595 VL - 11 IS - 2 KW - type 2 diabetes KW - hispanic KW - social support KW - online community KW - technology KW - peer support KW - diabetes KW - T2D KW - continuous glucose monitoring KW - behavior change KW - patient education N2 - Background: Type 2 diabetes is twice as likely to affect Hispanic people than their White counterparts. Technology and social support may be an important part of behavior change. In this study, we address gaps in diabetes care for Hispanic Spanish-speaking people with diabetes through an online peer support community (OPSC) pilot intervention using Hispanic Spanish-speaking peer facilitators with diabetes to enhance the use of continuous glucose monitoring (CGM) for diabetes management. Objective: This study aims to address gaps in diabetes care for Hispanic Spanish-speaking people with diabetes through an OPSC pilot intervention using Hispanic Spanish-speaking peer facilitators with diabetes to enhance the use of CGM for diabetes management. Methods: A mixed-methods, pre-post test design will be used in this feasibility study. A total of 50 Hispanic participants with type 2 diabetes willing to wear a continuous glucose monitor for 13 weeks will be recruited. Hispanic Spanish-speaking peer facilitators with diabetes and experience wearing a continuous glucose monitor will be employed and undergo training. Peer facilitators will help participants learn how CGM data can inform behavior changes via an OPSC. Participants will interact with the private OPSC at least three times a week. Weekly questions and prompts derived from the Association of Diabetes Care and Education Specialists, previously American Association of Diabetes Educators, and seven self-care behaviors will be delivered by peer facilitators to engage participants. Measures of feasibility and acceptability will be determined by the percentage of participants who enroll, complete the study, and use CGM (number of scans) and objective metrics from the OPSC. Efficacy potential outcomes include change in time in range of 70 to 180 mg/dL from baseline to 12 weeks, A1c, diabetes online community engagement, self-efficacy, and quality of life. Additionally, semistructured exit interviews will be conducted. Results: Funding for this project was secured in November 2018 and approved by the institutional review board in April 2019. Peer facilitator recruitment and training were undertaken in the second half of 2019, with participant recruitment and data collection conducted in January and April 2020. The study has now concluded. Conclusions: This study will generate new evidence about the use of an OPSC for Hispanic Spanish-speaking patients with diabetes to make behavior changes incorporating feedback from CGM. Trial Registration: ClinicalTrials.gov NCT03799796; https://clinicaltrials.gov/ct2/show/NCT03799796 International Registered Report Identifier (IRRID): RR1-10.2196/31595 UR - https://www.researchprotocols.org/2022/2/e31595 UR - http://dx.doi.org/10.2196/31595 UR - http://www.ncbi.nlm.nih.gov/pubmed/35200153 ID - info:doi/10.2196/31595 ER - TY - JOUR AU - Sivaratnam, Surabhi AU - Hwang, Kyobin AU - Chee-A-Tow, Alyssandra AU - Ren, Lily AU - Fang, Geoffrey AU - Jibb, Lindsay PY - 2022/2/21 TI - Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review JO - J Med Internet Res SP - e29821 VL - 24 IS - 2 KW - social media KW - research priority-setting KW - knowledge user KW - scoping review N2 - Background: The need to include individuals with lived experience (ie, patients, family members, caregivers, researchers, and clinicians) in health research priority setting is becoming increasingly recognized. Social media?based methods represent a means to elicit and prioritize the research interests of such individuals, but there remains sparse methodological guidance on how best to conduct these social media efforts and assess their effectiveness. Objective: This review aims to identify social media strategies that enhance participation in priority-setting research, collate metrics assessing the effectiveness of social media campaigns, and summarize the benefits and limitations of social media?based research approaches, as well as recommendations for prospective campaigns. Methods: We searched PubMed, Embase, Cochrane Library, Scopus, and Web of Science from database inception until September 2021. Two reviewers independently screened all titles and abstracts, as well as full texts for studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority setting. We subsequently conducted a thematic analysis to aggregate study data by related codes and themes. Results: A total of 23 papers reporting on 22 unique studies were included. These studies used Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and web-based forums to engage with health research stakeholders. Priority-setting engagement strategies included paid platform?based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling and the circulation of participation opportunities via internal members? and external organizations? social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used. Campaign effectiveness was indirectly assessed as numbers of priority-setting survey responses and visits to external survey administration sites. Recommendations to enhance engagement included the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand. Conclusions: Social media may increase the speed and reach of priority-setting participation opportunities leading to the development of research agendas informed by patients, family caregivers, clinicians, and researchers. Perceived limitations of the approach include underrepresentation of certain demographic groups and addressing such limitations will enhance the inclusion of diverse research priority opinions in future research agendas. UR - https://www.jmir.org/2022/2/e29821 UR - http://dx.doi.org/10.2196/29821 UR - http://www.ncbi.nlm.nih.gov/pubmed/35188476 ID - info:doi/10.2196/29821 ER - TY - JOUR AU - Sinicrope, S. Pamela AU - Young, D. Colleen AU - Resnicow, Ken AU - Merritt, T. Zoe AU - McConnell, R. Clara AU - Hughes, A. Christine AU - Koller, R. Kathryn AU - Bock, J. Martha AU - Decker, A. Paul AU - Flanagan, A. Christie AU - Meade, D. Crystal AU - Thomas, K. Timothy AU - Prochaska, J. Judith AU - Patten, A. Christi PY - 2022/2/17 TI - Lessons Learned From Beta-Testing a Facebook Group Prototype to Promote Treatment Use in the ?Connecting Alaska Native People to Quit Smoking? (CAN Quit) Study JO - J Med Internet Res SP - e28704 VL - 24 IS - 2 KW - Web 2.0 KW - social media KW - Facebook KW - Alaska Native KW - American Indian KW - Alaska KW - smoking KW - cessation KW - cancer prevention KW - Quitline KW - mobile phone UR - https://www.jmir.org/2022/2/e28704 UR - http://dx.doi.org/10.2196/28704 UR - http://www.ncbi.nlm.nih.gov/pubmed/35175208 ID - info:doi/10.2196/28704 ER - TY - JOUR AU - Gardner, Tania AU - Schultz, Regina AU - Haskelberg, Hila AU - Newby, M. Jill AU - Wheatley, Jane AU - Millard, Michael AU - Faux, G. Steven AU - Shiner, T. Christine PY - 2022/2/3 TI - The Effect of Adjunct Telephone Support on Adherence and Outcomes of the Reboot Online Pain Management Program: Randomized Controlled Trial JO - J Med Internet Res SP - e30880 VL - 24 IS - 2 KW - chronic pain KW - online pain management KW - telephone support KW - clinician guidance KW - adherence KW - digital health KW - eHealth KW - internet interventions KW - multidisciplinary N2 - Background: Internet-based treatment programs present a solution for providing access to pain management for those unable to access clinic-based multidisciplinary pain programs. Attrition from internet interventions is a common issue. Clinician-supported guidance can be an important feature in web-based interventions; however, the optimal level of therapist guidance and expertise required to improve adherence remains unclear. Objective: The aim of this study is to evaluate whether augmenting the existing Reboot Online program with telephone support by a clinician improves program adherence and effectiveness compared with the web-based program alone. Methods: A 2-armed, CONSORT (Consolidated Standards of Reporting Trials)?compliant, registered randomized controlled trial with one-to-one group allocation was conducted. It compared a web-based multidisciplinary pain management program, Reboot Online, combined with telephone support (n=44) with Reboot Online alone (n=45) as the control group. Participants were recruited through web-based social media and the This Way Up service provider network. The primary outcome for this study was adherence to the Reboot Online program. Adherence was quantified through three metrics: completion of the program, the number of participants who enrolled into the program, and the number of participants who commenced the program. Data on adherence were collected automatically through the This Way Up platform. Secondary measures of clinical effectiveness were also collected. Results: Reboot Online combined with telephone support had a positive effect on enrollment and commencement of the program compared with Reboot Online without telephone support. Significantly more participants from the Reboot Online plus telephone support group enrolled (41/44, 93%) into the course than those from the control group (35/45, 78%; ?21=4.2; P=.04). Furthermore, more participants from the intervention group commenced the course than those from the control group (40/44, 91% vs 27/45, 60%, respectively; ?21=11.4; P=.001). Of the participants enrolled in the intervention group, 43% (19/44) completed the course, and of those in the control group, 31% (14/45) completed the course. When considering the subgroup of those who commenced the program, there was no significant difference between the proportions of people who completed all 8 lessons in the intervention (19/40, 48%) and control groups (14/27, 52%; ?21=1.3; P=.24). The treatment efficacy on clinical outcome measures did not differ between the intervention and control groups. Conclusions: Telephone support improves participants? registration, program commencement, and engagement in the early phase of the internet intervention; however, it did not seem to have an impact on overall course completion or efficacy. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12619001076167; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12619001076167 UR - https://www.jmir.org/2022/2/e30880 UR - http://dx.doi.org/10.2196/30880 UR - http://www.ncbi.nlm.nih.gov/pubmed/35113021 ID - info:doi/10.2196/30880 ER - TY - JOUR AU - Fortuna, L. Karen AU - Marceau, R. Skyla AU - Kadakia, Arya AU - Pratt, I. Sarah AU - Varney, Joy AU - Walker, Robert AU - Myers, L. Amanda AU - Thompson, Shavon AU - Carter, Katina AU - Greene, Kaycie AU - Pringle, Willie PY - 2022/2/1 TI - Peer Support Specialists? Perspectives of a Standard Online Research Ethics Training: Qualitative Study JO - JMIR Form Res SP - e29073 VL - 6 IS - 2 KW - peer support specialists KW - community engagement KW - research ethics KW - mental health KW - peer support KW - codebook KW - online health KW - online training KW - education KW - ethics N2 - Background: Certified peer support specialists (CPS) have a mental health condition and are trained and certified by their respective state to offer Medicaid reimbursable peer support services. CPS are increasingly involved as partners in research studies. However, most research ethics training in the protection of human subjects is designed for people who, unlike CPS, have had exposure to prior formal research training. Objective: The aim of this study is to explore the perspectives of CPS in completing the Collaborative Institutional Training Initiative Social and Behavioral Responsible Conduct of Research online training. Methods: A total of 5 CPS were recruited using a convenience sample framework through the parent study, a patient-centered outcomes research study that examined the comparative effectiveness of two chronic health disease management programs for people with serious mental illness. Participants independently completed the Collaborative Institutional Training Initiative Social and Behavioral Responsible Conduct of Research online training. All participants completed 15 online modules in approximately 7-9 hours and also filled out a self-report measure of executive functioning (the Adult Executive Functioning Inventory [ADEXI]). Qualitative data were collected from a 1-hour focus group and qualitative analysis was informed by the grounded theory approach. The codebook consisted of codes inductively derived from the data. Codes were independently assigned to text, grouped, and checked for themes. Thematic analysis was used to organize themes. Results: Passing scores for each module ranged from 81%-89%, with an average of 85.4% and a median of 86%. The two themes that emerged from the focus group were the following: comprehension (barrier) and opportunity (facilitator). Participants had a mean score of 27.4 on the ADEXI. Conclusions: The CPS perceived the research ethics online training as an opportunity to share their lived experience expertise to enhance current research efforts by nonpeer scientists. Although the CPS completed the online research ethics training, the findings indicate CPS experienced difficulty with comprehension of the research ethics online training materials. Adaptations may be needed to facilitate uptake of research ethics online training by CPS and create a workforce of CPS to offer their lived experience expertise alongside peer and nonpeer researchers. UR - https://formative.jmir.org/2022/2/e29073 UR - http://dx.doi.org/10.2196/29073 UR - http://www.ncbi.nlm.nih.gov/pubmed/35103606 ID - info:doi/10.2196/29073 ER - TY - JOUR AU - Renner, Simon AU - Marty, Tom AU - Khadhar, Mickaïl AU - Foulquié, Pierre AU - Voillot, Paméla AU - Mebarki, Adel AU - Montagni, Ilaria AU - Texier, Nathalie AU - Schück, Stéphane PY - 2022/1/28 TI - A New Method to Extract Health-Related Quality of Life Data From Social Media Testimonies: Algorithm Development and Validation JO - J Med Internet Res SP - e31528 VL - 24 IS - 1 KW - health-related quality of life KW - social media use KW - measures KW - real world KW - natural language processing KW - social media KW - NLP KW - infoveillance KW - quality of life KW - digital health KW - social listening N2 - Background: Monitoring social media has been shown to be a useful means to capture patients? opinions and feelings about medical issues, ranging from diseases to treatments. Health-related quality of life (HRQoL) is a useful indicator of overall patients? health, which can be captured online. Objective: This study aimed to describe a social media listening algorithm able to detect the impact of diseases or treatments on specific dimensions of HRQoL based on posts written by patients in social media and forums. Methods: Using a web crawler, 19 forums in France were harvested, and messages related to patients? experience with disease or treatment were specifically collected. The SF-36 (Short Form Health Survey) and EQ-5D (Euro Quality of Life 5 Dimensions) HRQoL surveys were mixed and adapted for a tailored social media listening system. This was carried out to better capture the variety of expression on social media, resulting in 5 dimensions of the HRQoL, which are physical, psychological, activity-based, social, and financial. Models were trained using cross-validation and hyperparameter optimization. Oversampling was used to increase the infrequent dimension: after annotation, SMOTE (synthetic minority oversampling technique) was used to balance the proportions of the dimensions among messages. Results: The training set was composed of 1399 messages, randomly taken from a batch of 20,000 health-related messages coming from forums. The algorithm was able to detect a general impact on HRQoL (sensitivity of 0.83 and specificity of 0.74), a physical impact (0.67 and 0.76), a psychic impact (0.82 and 0.60), an activity-related impact (0.73 and 0.78), a relational impact (0.73 and 0.70), and a financial impact (0.79 and 0.74). Conclusions: The development of an innovative method to extract health data from social media as real time assessment of patients? HRQoL is useful to a patient-centered medical care. As a source of real-world data, social media provide a complementary point of view to understand patients? concerns and unmet needs, as well as shedding light on how diseases and treatments can be a burden in their daily lives. UR - https://www.jmir.org/2022/1/e31528 UR - http://dx.doi.org/10.2196/31528 UR - http://www.ncbi.nlm.nih.gov/pubmed/35089152 ID - info:doi/10.2196/31528 ER - TY - JOUR AU - Voillot, Paméla AU - Riche, Brigitte AU - Portafax, Michel AU - Foulquié, Pierre AU - Gedik, Anaïs AU - Barbarot, Sébastien AU - Misery, Laurent AU - Héas, Stéphane AU - Mebarki, Adel AU - Texier, Nathalie AU - Schück, Stéphane PY - 2022/1/28 TI - Social Media Platforms Listening Study on Atopic Dermatitis: Quantitative and Qualitative Findings JO - J Med Internet Res SP - e31140 VL - 24 IS - 1 KW - atopic dermatitis KW - Atopic Dermatitis Control Tool KW - health-related quality of life KW - social media use KW - real world KW - dermatology KW - skin disease KW - social media KW - online health information KW - online health KW - health care N2 - Background: Atopic dermatitis (AD) is a chronic, pruritic, inflammatory disease that occurs most frequently in children but also affects many adults. Social media have become key tools for finding and disseminating medical information. Objective: The aims of this study were to identify the main themes of discussion, the difficulties encountered by patients with respect to AD, the impact of the pathology on quality of life (QoL; physical, psychological, social, or financial), and to study the perception of patients regarding their treatment. Methods: A retrospective study was carried out by collecting social media posts in French language written by internet users mentioning their experience with AD, their QoL, and their treatments. Messages related to AD discomfort posted between July 1, 2010, and October 23, 2020, were extracted from French-speaking publicly available online forums. Automatic and manual extractions were implemented to create a general corpus and 2 subcorpuses depending on the level of control of the disease. Results: A total of 33,115 messages associated with AD were included in the analysis corpus after extraction and cleaning. These messages were posted by 15,857 separate web users, most of them being women younger than 40 years. Tips to manage AD and everyday hygiene/treatments were among the most discussed topics for controlled AD subcorpus, while baby-related topics and therapeutic failure were among the most discussed topics for insufficiently controlled AD subcorpus. QoL was discussed in both subcorpuses with a higher proportion in the controlled AD subcorpus. Treatments and their perception were also discussed by web users. Conclusions: More than just emotional or peer support, patients with AD turn to online forums to discuss their health. Our findings show the need for an intersection between social media and health care and the importance of developing new approaches such as the Atopic Dermatitis Control Tool, which is a patient-related disease severity assessment tool focused on patients with AD. UR - https://www.jmir.org/2022/1/e31140 UR - http://dx.doi.org/10.2196/31140 UR - http://www.ncbi.nlm.nih.gov/pubmed/35089160 ID - info:doi/10.2196/31140 ER - TY - JOUR AU - Rosenberg, M. Benjamin AU - Kodish, Tamar AU - Cohen, D. Zachary AU - Gong-Guy, Elizabeth AU - Craske, G. Michelle PY - 2022/1/26 TI - A Novel Peer-to-Peer Coaching Program to Support Digital Mental Health: Design and Implementation JO - JMIR Ment Health SP - e32430 VL - 9 IS - 1 KW - peer support KW - digital mental health KW - university students KW - college students KW - training and supervision KW - scalable psychological interventions UR - https://mental.jmir.org/2022/1/e32430 UR - http://dx.doi.org/10.2196/32430 UR - http://www.ncbi.nlm.nih.gov/pubmed/35080504 ID - info:doi/10.2196/32430 ER - TY - JOUR AU - Gonzalez, Gabriela AU - Vaculik, Kristina AU - Khalil, Carine AU - Zektser, Yuliya AU - Arnold, Corey AU - Almario, V. Christopher AU - Spiegel, Brennan AU - Anger, Jennifer PY - 2022/1/25 TI - Using Large-scale Social Media Analytics to Understand Patient Perspectives About Urinary Tract Infections: Thematic Analysis JO - J Med Internet Res SP - e26781 VL - 24 IS - 1 KW - female urology KW - urinary tract infections KW - health services research KW - social media KW - online community KW - online forum KW - latent Dirichlet allocation KW - data mining KW - digital ethnography N2 - Background: Current qualitative literature about the experiences of women dealing with urinary tract infections (UTIs) is limited to patients recruited from tertiary centers and medical clinics. However, traditional focus groups and interviews may limit what patients share. Using digital ethnography, we analyzed free-range conversations of an online community. Objective: This study aimed to investigate and characterize the patient perspectives of women dealing with UTIs using digital ethnography. Methods: A data-mining service was used to identify online posts. A thematic analysis was conducted on a subset of the identified posts. Additionally, a latent Dirichlet allocation (LDA) probabilistic topic modeling method was applied to review the entire data set using a semiautomatic approach. Each identified topic was generated as a discrete distribution over the words in the collection, which can be thought of as a word cloud. We also performed a thematic analysis of the word cloud topic model results. Results: A total of 83,589 posts by 53,460 users from 859 websites were identified. Our hand-coding inductive analysis yielded the following 7 themes: quality-of-life impact, knowledge acquisition, support of the online community, health care utilization, risk factors and prevention, antibiotic treatment, and alternative therapies. Using the LDA topic model method, 105 themes were identified and consolidated into 9 categories. Of the LDA-derived themes, 25.7% (27/105) were related to online community support, and 22% (23/105) focused on UTI risk factors and prevention strategies. Conclusions: Our large-scale social media analysis supports the importance and reproducibility of using online data to comprehend women?s UTI experience. This inductive thematic analysis highlights patient behavior, self-empowerment, and online media utilization by women to address their health concerns in a safe, anonymous way. UR - https://www.jmir.org/2022/1/e26781 UR - http://dx.doi.org/10.2196/26781 UR - http://www.ncbi.nlm.nih.gov/pubmed/35076404 ID - info:doi/10.2196/26781 ER - TY - JOUR AU - Yeung, Kan Andy Wai AU - Tosevska, Anela AU - Klager, Elisabeth AU - Eibensteiner, Fabian AU - Tsagkaris, Christos AU - Parvanov, D. Emil AU - Nawaz, A. Faisal AU - Völkl-Kernstock, Sabine AU - Schaden, Eva AU - Kletecka-Pulker, Maria AU - Willschke, Harald AU - Atanasov, G. Atanas PY - 2022/1/25 TI - Medical and Health-Related Misinformation on Social Media: Bibliometric Study of the Scientific Literature JO - J Med Internet Res SP - e28152 VL - 24 IS - 1 KW - COVID-19 KW - Twitter KW - health KW - social media KW - bibliometric KW - dissemination KW - knowledge exchange N2 - Background: Social media has been extensively used for the communication of health-related information and consecutively for the potential spread of medical misinformation. Conventional systematic reviews have been published on this topic to identify original articles and to summarize their methodological approaches and themes. A bibliometric study could complement their findings, for instance, by evaluating the geographical distribution of the publications and determining if they were well cited and disseminated in high-impact journals. Objective: The aim of this study was to perform a bibliometric analysis of the current literature to discover the prevalent trends and topics related to medical misinformation on social media. Methods: The Web of Science Core Collection electronic database was accessed to identify relevant papers with the following search string: ALL=(misinformati* OR ?wrong informati*? OR disinformati* OR ?misleading informati*? OR ?fake news*?) AND ALL=(medic* OR illness* OR disease* OR health* OR pharma* OR drug* OR therap*) AND ALL=(?social media*? OR Facebook* OR Twitter* OR Instagram* OR YouTube* OR Weibo* OR Whatsapp* OR Reddit* OR TikTok* OR WeChat*). Full records were exported to a bibliometric software, VOSviewer, to link bibliographic information with citation data. Term and keyword maps were created to illustrate recurring terms and keywords. Results: Based on an analysis of 529 papers on medical and health-related misinformation on social media, we found that the most popularly investigated social media platforms were Twitter (n=90), YouTube (n=67), and Facebook (n=57). Articles targeting these 3 platforms had higher citations per paper (>13.7) than articles covering other social media platforms (Instagram, Weibo, WhatsApp, Reddit, and WeChat; citations per paper <8.7). Moreover, social media platform?specific papers accounted for 44.1% (233/529) of all identified publications. Investigations on these platforms had different foci. Twitter-based research explored cyberchondria and hypochondriasis, YouTube-based research explored tobacco smoking, and Facebook-based research studied vaccine hesitancy related to autism. COVID-19 was a common topic investigated across all platforms. Overall, the United States contributed to half of all identified papers, and 80% of the top 10 most productive institutions were based in this country. The identified papers were mostly published in journals of the categories public environmental and occupational health, communication, health care sciences services, medical informatics, and medicine general internal, with the top journal being the Journal of Medical Internet Research. Conclusions: There is a significant platform-specific topic preference for social media investigations on medical misinformation. With a large population of internet users from China, it may be reasonably expected that Weibo, WeChat, and TikTok (and its Chinese version Douyin) would be more investigated in future studies. Currently, these platforms present research gaps that leave their usage and information dissemination warranting further evaluation. Future studies should also include social platforms targeting non-English users to provide a wider global perspective. UR - https://www.jmir.org/2022/1/e28152 UR - http://dx.doi.org/10.2196/28152 UR - http://www.ncbi.nlm.nih.gov/pubmed/34951864 ID - info:doi/10.2196/28152 ER - TY - JOUR AU - Hudson, Georgie AU - Jansli, M. Sonja AU - Erturk, Sinan AU - Morris, Daniel AU - Odoi, M. Clarissa AU - Clayton-Turner, Angela AU - Bray, Vanessa AU - Yourston, Gill AU - Clouden, Doreen AU - Proudfoot, David AU - Cornwall, Andrew AU - Waldron, Claire AU - Wykes, Til AU - Jilka, Sagar PY - 2022/1/24 TI - Investigation of Carers? Perspectives of Dementia Misconceptions on Twitter: Focus Group Study JO - JMIR Aging SP - e30388 VL - 5 IS - 1 KW - patient and public involvement KW - dementia KW - co-production KW - misconceptions KW - stigma KW - Twitter KW - social media KW - Alzheimer?s Disease N2 - Background: Dementia misconceptions on social media are common, with negative effects on people with the condition, their carers, and those who know them. This study codeveloped a thematic framework with carers to understand the forms these misconceptions take on Twitter. Objective: The aim of this study is to identify and analyze types of dementia conversations on Twitter using participatory methods. Methods: A total of 3 focus groups with dementia carers were held to develop a framework of dementia misconceptions based on their experiences. Dementia-related tweets were collected from Twitter?s official application programming interface using neutral and negative search terms defined by the literature and by carers (N=48,211). A sample of these tweets was selected with equal numbers of neutral and negative words (n=1497), which was validated in individual ratings by carers. We then used the framework to analyze, in detail, a sample of carer-rated negative tweets (n=863). Results: A total of 25.94% (12,507/48,211) of our tweet corpus contained negative search terms about dementia. The carers? framework had 3 negative and 3 neutral categories. Our thematic analysis of carer-rated negative tweets found 9 themes, including the use of weaponizing language to insult politicians (469/863, 54.3%), using dehumanizing or outdated words or statements about members of the public (n=143, 16.6%), unfounded claims about the cures or causes of dementia (n=11, 1.3%), or providing armchair diagnoses of dementia (n=21, 2.4%). Conclusions: This is the first study to use participatory methods to develop a framework that identifies dementia misconceptions on Twitter. We show that misconceptions and stigmatizing language are not rare. They manifest through minimizing and underestimating language. Web-based campaigns aiming to reduce discrimination and stigma about dementia could target those who use negative vocabulary and reduce the misconceptions that are being propagated, thus improving general awareness. UR - https://aging.jmir.org/2022/1/e30388 UR - http://dx.doi.org/10.2196/30388 UR - http://www.ncbi.nlm.nih.gov/pubmed/35072637 ID - info:doi/10.2196/30388 ER - TY - JOUR AU - Zanoni, C. Brian AU - Archary, Moherndran AU - Sibaya, Thobekile AU - Goldstein, Madeleine AU - Bergam, Scarlett AU - Denton, David AU - Cordero, Vincente AU - Peng, Cynthia AU - Psaros, Christina AU - Marconi, C. Vincent AU - Haberer, E. Jessica PY - 2022/1/21 TI - Mobile Phone?Based Intervention Among Adolescents Living With Perinatally Acquired HIV Transitioning from Pediatric to Adult Care: Protocol for the Interactive Transition Support for Adolescents Living With HIV using Social Media (InTSHA) Study JO - JMIR Res Protoc SP - e35455 VL - 11 IS - 1 KW - adolescent KW - mHealth KW - South Africa KW - HIV KW - Social media KW - InTSHA KW - protocol KW - transition support KW - support KW - WhatsApp KW - caregiver KW - health care provider N2 - Background: Adolescents living with perinatally acquired HIV often have poor retention in care and viral suppression during the transition from pediatric to adult-based care. Objective: The aim of this study is to evaluate a mobile phone?based intervention, Interactive Transition Support for Adolescents Living With HIV using Social Media (InTSHA), among adolescents living with perinatally acquired HIV as they transition from pediatric to adult care in South Africa. Methods: InTSHA uses encrypted, closed group chats delivered via WhatsApp (Meta Platforms Inc) to develop peer support and improve communication between adolescents, their caregivers, and health care providers. The intervention is based on formative work with adolescents, caregivers, and health care providers and builds on several existing adolescent support programs as well as the Social-ecological Model of Adolescent and Young Adult Readiness for Transition (SMART). The final InTSHA intervention involves 10 modules conducted weekly through moderated WhatsApp group chats with adolescents and separately with their caregivers. We will randomly assign 80 South African adolescents living with perinatally acquired HIV who are aware of their HIV status and aged between 15 and 19 years to receive either the intervention (n=40) or standard of care (n=40). Results: We will measure acceptability of the intervention as the primary outcome and evaluate feasibility and preliminary effectiveness for retention in care and viral suppression after completion of the intervention and at least 6 months after randomization. In addition, we will measure secondary outcomes evaluating the impact of the InTSHA intervention on peer support, self-esteem, depression, stigma, sexual education, connection to health care providers, and transition readiness. Enrollment began on April 15, 2021. As of December 31, 2021 a total of 78 out of expected 80 participants have been enrolled. Conclusions: If successful, the intervention will be evaluated in a fully powered randomized controlled trial with a larger number of adolescents from urban and rural populations to further evaluate the generalizability of InTSHA. Trial Registration: ClinicalTrials.gov NCT03624413; https://clinicaltrials.gov/ct2/show/NCT03624413 International Registered Report Identifier (IRRID): DERR1-10.2196/35455 UR - https://www.researchprotocols.org/2022/1/e35455 UR - http://dx.doi.org/10.2196/35455 UR - http://www.ncbi.nlm.nih.gov/pubmed/35060907 ID - info:doi/10.2196/35455 ER - TY - JOUR AU - Lim, C. Megan S. AU - Molenaar, Annika AU - Brennan, Linda AU - Reid, Mike AU - McCaffrey, Tracy PY - 2022/1/18 TI - Young Adults? Use of Different Social Media Platforms for Health Information: Insights From Web-Based Conversations JO - J Med Internet Res SP - e23656 VL - 24 IS - 1 KW - social media KW - Facebook KW - Instagram KW - YouTube KW - health information KW - health communication KW - young adults N2 - Background: Social media?delivered health promotion has demonstrated limited uptake and effectiveness among young adults. Understanding how young adults interact with existing social media platforms for health might provide insight for future health promotion interventions. Objective: The aim of this study is to describe how young adults interact with different social media platforms for health and health information. Methods: We used a web-based conversation methodology to collect data from 165 young adults aged 18 to 24 years. Participants participated in an extended conversation with moderators and other participants about health and social media. They were prompted to discuss how they find health information, how they use different social media platforms, and how they evaluate the trustworthiness of information. A thematic qualitative analysis was applied to the data. Results: Young adults spent a lot of time scrolling through Facebook newsfeeds, which often resulted in seeing health-related content either from their friends, news sources, or advertisements. Some actively sought out information about specific health areas by joining groups or following relevant pages. YouTube was considered a useful source for learning about everything and was often the go-to when searching for information or advice (after Google). Young adults found the video format easy to learn from. They stated that they could identify accurate YouTube health content by cross-checking multiple videos, by feeling that the presenter was real and relatable, or just through instinctively judging a video?s credibility. Instagram was a source of inspiration for health and wellness from those whose lives were dedicated to healthy lifestyles and fitness. Twitter, Tumblr, and Snapchat were rarely used for health information. Conclusions: Most young adults obtain health information from social media, both actively and through passive exposure. Participants indicated looking to social media influencers for health and lifestyle inspiration and judged the credibility of sources by appearance and instinct. Health experts should try to use the channels in the way that young adults already use them; use relatable role models on Instagram and YouTube, eye-catching headlines and support groups on Facebook, and easy to follow instruction videos via YouTube. International Registered Report Identifier (IRRID): RR2-10.1111/1747-0080.12448 UR - https://www.jmir.org/2022/1/e23656 UR - http://dx.doi.org/10.2196/23656 UR - http://www.ncbi.nlm.nih.gov/pubmed/35040796 ID - info:doi/10.2196/23656 ER - TY - JOUR AU - Egerton, Thorlene AU - Lawford, J. Belinda AU - Campbell, K. Penny AU - Plinsinga, L. Melanie AU - Spiers, Libby AU - Mackenzie, A. David AU - Graham, Bridget AU - Mills, Kathryn AU - Eyles, Jillian AU - Knox, Gabrielle AU - Metcalf, Ben AU - Maclachlan, R. Liam AU - Besomi, Manuela AU - Dickson, Chris AU - Abraham, Charles AU - Vicenzino, Bill AU - Hodges, W. Paul AU - Hunter, J. David AU - Bennell, L. Kim PY - 2022/1/17 TI - Expert-Moderated Peer-to-Peer Online Support Group for People With Knee Osteoarthritis: Mixed Methods Randomized Controlled Pilot and Feasibility Study JO - JMIR Form Res SP - e32627 VL - 6 IS - 1 KW - support group KW - online support group KW - knee KW - osteoarthritis KW - arthritis KW - online forums KW - patient education KW - self-efficacy KW - health literacy KW - self-management KW - qualitative N2 - Background: Osteoarthritis (OA) is a major problem globally. First-line management comprises education and self-management strategies. Online support groups may be a low-cost method of facilitating self-management. Objective: The aim of this randomized controlled pilot study is to evaluate the feasibility of the study design and implementation of an evidence-informed, expert-moderated, peer-to-peer online support group (My Knee Community) for people with knee OA. The impacts on psychological determinants of self-management, selected self-management behaviors, and health outcomes were secondary investigations. Methods: This mixed methods study evaluated study feasibility (participant recruitment, retention, and costs), experimental intervention feasibility (acceptability and fidelity to the proposed design, including perceived benefit, satisfaction, and member engagement), psychological determinants (eg, self-efficacy and social support), behavioral measures, health outcomes, and harms. Of a total of 186, 63 (33.9%) participants (41/63, 65% experimental and 22/63, 35% control) with self-reported knee OA were recruited from 186 volunteers. Experimental group participants were provided membership to My Knee Community, which already had existing nonstudy members, and were recommended a web-based education resource (My Joint Pain). The control group received the My Joint Pain website recommendation only. Participants were not blinded to their group allocation or the study interventions. Participant-reported data were collected remotely using web-based questionnaires. A total of 10 experimental group participants also participated in semistructured interviews. The transcribed interview data and all forum posts by the study participants were thematically analyzed. Results: Study feasibility was supported by acceptable levels of retention; however, there were low levels of engagement with the support group by participants: 15% (6/41) of participants did not log in at all; the median number of times visited was 4 times per participant; only 29% (12/41) of participants posted, and there were relatively low levels of activity overall on the forum. This affected the results for satisfaction (overall mean 5.9/10, SD 2.7) and perceived benefit (17/31, 55%: yes). There were no differences among groups for quantitative outcomes. The themes discussed in the interviews were connections and support, information and advice, and barriers and facilitators. Qualitative data suggest that there is potential for people to derive benefit from connecting with others with knee OA by receiving support and assisting with unmet informational needs. Conclusions: Although a large-scale study is feasible, the intervention implementation was considered unsatisfactory because of low levels of activity and engagement by members. We recommend that expectations about the support group need to be made clear from the outset. Additionally, the platform design needs to be more engaging and rewarding, and membership should only be offered to people willing to share their personal stories and who are interested in learning from the experiences of others. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12619001230145; http://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377958 UR - https://formative.jmir.org/2022/1/e32627 UR - http://dx.doi.org/10.2196/32627 UR - http://www.ncbi.nlm.nih.gov/pubmed/35037880 ID - info:doi/10.2196/32627 ER - TY - JOUR AU - Possemato, Kyle AU - Wu, Justina AU - Greene, Carolyn AU - MacQueen, Rex AU - Blonigen, Daniel AU - Wade, Michael AU - Owen, Jason AU - Keane, Terence AU - Brief, Deborah AU - Lindley, Steven AU - Prins, Annabel AU - Mackintosh, Margaret-Anne AU - Carlson, Eve PY - 2022/1/13 TI - Web-Based Problem-solving Training With and Without Peer Support in Veterans With Unmet Mental Health Needs: Pilot Study of Feasibility, User Acceptability, and Participant Engagement JO - J Med Internet Res SP - e29559 VL - 24 IS - 1 KW - problem-solving training KW - mHealth KW - peer specialists KW - veterans N2 - Background: eHealth tools have the potential to meet the mental health needs of individuals who experience barriers to accessing in-person treatment. However, most users have less than optimal engagement with eHealth tools. Coaching from peer specialists may increase their engagement with eHealth. Objective: This pilot study aims to test the feasibility and acceptability of a novel, completely automated web-based system to recruit, screen, enroll, assess, randomize, and then deliver an intervention to a national sample of military veterans with unmet mental health needs; investigate whether phone-based peer support increases the use of web-based problem-solving training compared with self-directed use; and generate hypotheses about potential mechanisms of action for problem-solving and peer support for future full-scale research. Methods: Veterans (N=81) with unmet mental health needs were recruited via social media advertising and enrolled and randomized to the self-directed use of a web-based problem-solving training called Moving Forward (28/81, 35%), peer-supported Moving Forward (27/81, 33%), or waitlist control (26/81, 32%). The objective use of Moving Forward was measured with the number of log-ins. Participants completed pre- and poststudy measures of mental health symptoms and problem-solving confidence. Satisfaction was also assessed post treatment. Results: Automated recruitment, enrollment, and initial assessment methods were feasible and resulted in a diverse sample of veterans with unmet mental health needs from 38 states. Automated follow-up methods resulted in 46% (37/81) of participants completing follow-up assessments. Peer support was delivered with high fidelity and was associated with favorable participant satisfaction. Participants randomized to receive peer support had significantly more Moving Forward log-ins than those of self-directed Moving Forward participants, and those who received peer support had a greater decrease in depression. Problem-solving confidence was associated with greater Moving Forward use and improvements in mental health symptoms among participants both with and without peer support. Conclusions: Enrolling and assessing individuals in eHealth studies without human contact is feasible; however, different methods or designs are necessary to achieve acceptable participant engagement and follow-up rates. Peer support shows potential for increasing engagement in web-based interventions and reducing symptoms. Future research should investigate when and for whom peer support for eHealth is helpful. Problem-solving confidence should be further investigated as a mechanism of action for web-based problem-solving training. Trial Registration: ClinicalTrials.gov NCT03555435; http://clinicaltrials.gov/ct2/show/NCT03555435 UR - https://www.jmir.org/2022/1/e29559 UR - http://dx.doi.org/10.2196/29559 UR - http://www.ncbi.nlm.nih.gov/pubmed/35023846 ID - info:doi/10.2196/29559 ER - TY - JOUR AU - Struik, Laura AU - Khan, Shaheer AU - Assoiants, Artem AU - Sharma, H. Ramona PY - 2022/1/13 TI - Assessment of Social Support and Quitting Smoking in an Online Community Forum: Study Involving Content Analysis JO - JMIR Form Res SP - e34429 VL - 6 IS - 1 KW - qualitative research KW - smoking cessation KW - social media KW - social support KW - smoking KW - tobacco use KW - tobacco KW - online forum N2 - Background: A key factor in successfully reducing and quitting smoking, as well as preventing smoking relapse is access to and engagement with social support. Recent technological advances have made it possible for smokers to access social support via online community forums. While community forums associated with smoking cessation interventions are now common practice, there is a gap in understanding how and when the different types of social support identified by Cutrona and Suhr (1992) (emotional, esteem, informational, tangible, and network) are exchanged on such forums. Community forums that entail ?superusers? (a key marker of a successful forum), like QuitNow, are ripe for exploring and leveraging promising social support exchanges on these platforms. Objective: The purpose of this study was to characterize the posts made on the QuitNow community forum at different stages in the quit journey, and determine when and how the social support constructs are present within the posts. Methods: A total of 506 posts (including original and response posts) were collected. Using conventional content analysis, the original posts were coded inductively to generate categories and subcategories, and the responses were coded deductively according to the 5 types of social support. Data were analyzed using Microsoft Excel software. Results: Overall, individuals were most heavily engaged on the forum during the first month of quitting, which then tapered off in the subsequent months. In relation to the original posts, the majority of them fit into the categories of sharing quit successes, quit struggles, updates, quit strategies, and desires to quit. Asking for advice and describing smoke-free benefits were the least represented categories. In relation to the responses, encouragement (emotional), compliment (esteem), and suggestion/advice (informational) consistently remained the most prominent types of support throughout all quit stages. Companionship (network) maintained a steady downward trajectory over time. Conclusions: The findings of this study highlight the complexity of how and when different types of social support are exchanged on the QuitNow community forum. These findings provide directions for how social support can be more strategically employed and leveraged in these online contexts to support smoking cessation. UR - https://formative.jmir.org/2022/1/e34429 UR - http://dx.doi.org/10.2196/34429 UR - http://www.ncbi.nlm.nih.gov/pubmed/35023834 ID - info:doi/10.2196/34429 ER - TY - JOUR AU - Wilczynski, Ophélie AU - Boisbouvier, Anthony AU - Radoszycki, Lise AU - Cotté, François-Emery AU - Gaudin, Anne-Françoise AU - Lemasson, Hervé PY - 2022/1/11 TI - Integrating Quality of Life in the Care Pathway of Cancer Patients Undergoing Immunotherapy Treatment: Descriptive, Cross-sectional Survey of an Online Patient Community's Experiences and Expectations JO - J Med Internet Res SP - e25792 VL - 24 IS - 1 KW - cancer KW - quality of life KW - immunotherapy KW - patient community KW - patient satisfaction N2 - Background: New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented. Objective: This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management. Methods: This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed. Results: Of 82 patients included (mean age: 56.9 years, 95% CI 54.2-59.6; 46 [56%] male; 34 [41%] with lung cancer), 62 (76%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66%), oncologists (53/82, 65%), and hospital nurses (50/82, 61%). Around half (45/82, 55%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient?s initiative (34/53, 64%). Discussions occurred primarily during follow-up visits (40/62, 65%), when adverse events occurred (30/62, 48%), and at treatment initiation (27/62, 32%). The most discussed dimensions were symptoms (48/62, 77%) and physical well-being (43/62, 69%). With respect to expectations, 54/82 (66%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77%) and when treatment was initiated (75/82, 92%) or changed (68/82, 83%). All HRQoL dimensions were considered important to discuss. Conclusions: With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed. UR - https://www.jmir.org/2022/1/e25792 UR - http://dx.doi.org/10.2196/25792 UR - http://www.ncbi.nlm.nih.gov/pubmed/35014969 ID - info:doi/10.2196/25792 ER - TY - JOUR AU - Kruzan, Payne Kaylee AU - Whitlock, Janis AU - Bazarova, N. Natalya AU - Bhandari, Aparajita AU - Chapman, Julia PY - 2022/1/10 TI - Use of a Mobile Peer Support App Among Young People With Nonsuicidal Self-injury: Small-scale Randomized Controlled Trial JO - JMIR Form Res SP - e26526 VL - 6 IS - 1 KW - nonsuicidal self-injury KW - randomized controlled trial KW - mobile app KW - peer support KW - urges KW - digital intervention N2 - Background: Nonsuicidal self-injury (NSSI) is a widespread behavior among adolescents and young adults. Although many individuals who self-injure do not seek treatment, there is evidence for web-based help-seeking through web-based communities and mobile peer support networks. However, few studies have rigorously tested the efficacy of such platforms on outcomes relevant for NSSI recovery. Objective: The aim of this small-scale preregistered randomized controlled trial is to provide preliminary insight into the shorter- and longer-term efficacy of the use of a peer support app, TalkLife, in reducing NSSI frequency and urges and increasing readiness to change. In addition, we explore contact with informal support, interest in therapy, and attitudes toward professional help?seeking. Methods: Individuals aged 16-25 years with current (within 3 months) and chronic (>6 episodes in the past year) NSSI history were eligible to participate in this study. After baseline assessments, the intervention group was instructed to use the app actively (eg, post or comment at least three times per week) and the control group received weekly psychoeducational materials through email, for 8 weeks. Follow-up was assessed at 1 month and 2 months. Linear mixed modeling was used to evaluate condition and time point effects for the primary outcomes of NSSI frequency and urges, readiness to change, contact with informal support, interest in therapy, and attitudes toward professional help?seeking. Results: A total of 131 participants were included in the analysis. We evidenced a significant effect of condition on NSSI frequency such that the participants using the peer support app self-injured less over the course of the study (mean 1.30, SE 0.18) than those in the control condition (mean 1.62, SE 0.18; P=.02; ?2=0.02). We also evidenced a significant condition effect of readiness to change such that the treatment participants reported greater confidence in their ability to change their NSSI behavior (mean 6.28, SE 0.41) than the control participants (mean 5.67, SE 0.41; P=.04; ?2=0.02). No significant differences were observed for contact with informal support, interest in therapy, or attitudes toward professional help?seeking. Conclusions: Use of the peer support app was related to reduced NSSI frequency and greater confidence in one?s ability to change NSSI behavior over the course of the study period, but no effects on NSSI urges, contact with informal support, interest in therapy, or attitudes toward professional help?seeking were observed. The findings provide preliminary support for considering the use of mobile peer support apps as a supplement to NSSI intervention and point to the need for larger-scale trials. Trial Registration: Open Science Foundation; https://osf.io/3uay9 UR - https://formative.jmir.org/2022/1/e26526 UR - http://dx.doi.org/10.2196/26526 UR - http://www.ncbi.nlm.nih.gov/pubmed/35006076 ID - info:doi/10.2196/26526 ER - TY - JOUR AU - Farsi, Deema AU - Martinez-Menchaca, R. Hector AU - Ahmed, Mohammad AU - Farsi, Nada PY - 2022/1/7 TI - Social Media and Health Care (Part II): Narrative Review of Social Media Use by Patients JO - J Med Internet Res SP - e30379 VL - 24 IS - 1 KW - social media KW - social networking KW - internet KW - health care KW - COVID-19 KW - patient KW - telemedicine KW - mobile phone N2 - Background: People are now connected in a borderless web-based world. The modern public, especially the younger generation, relies heavily on the internet as the main source of health-related information. In health care, patients can use social media for more tailored uses such as telemedicine, finding a provider, and for peer support. Objective: The aim of this narrative review is to discuss how social media has been used in the health care industry from the perspective of patients and describe the main issues surrounding its use in health care. Methods: Between March and June 2020, a review of the literature was conducted on PubMed, Google Scholar, and Web of Science for English studies that were published since 2007 and discussed the use of social media in health care. In addition to only English publications that discussed the use of social media by patients, publications pertaining to ethical and legal considerations in the use of social media were included. The studies were then categorized as health information, telemedicine, finding a health care provider, peer support and sharing experiences, and influencing positive health behavior. In addition, two more sections were added to the review: issues pertaining to social media use in health care and ethical considerations. Results: Initially, 75 studies were included. As the study proceeded, more studies were included, and a total of 91 studies were reviewed, complemented by 1 textbook chapter and 13 web references. Approximately half of the studies were reviews. The first study was published in 2009, and the last was published in 2021, with more than half of the studies published in the last 5 years. The studies were mostly from the United States (n=40), followed by Europe (n=13), and the least from India (n=1). WhatsApp or WeChat was the most investigated social media platform. Conclusions: Social media can be used by the public and patients to improve their health and knowledge. However, due diligence must be practiced to assess the credibility of the information obtained and its source. Health care providers, patients, and the public need not forget the risks associated with the use of social media. The limitations and shortcomings of the use of social media by patients should be understood. UR - https://www.jmir.org/2022/1/e30379 UR - http://dx.doi.org/10.2196/30379 UR - http://www.ncbi.nlm.nih.gov/pubmed/34994706 ID - info:doi/10.2196/30379 ER - TY - JOUR AU - Titgemeyer, Catrin Sarah AU - Schaaf, P. Christian PY - 2022/1/6 TI - Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns JO - JMIR Pediatr Parent SP - e31411 VL - 5 IS - 1 KW - Facebook KW - support group KW - parental support KW - pediatric rare diseases KW - privacy paradox KW - children?s privacy N2 - Background: Because of the nature of rare diseases with affected individuals being widely geographically dispersed, finding an in-person/offline support group itself can be a challenge. Affected individuals therefore turn to social networking platforms such as Facebook for online support groups. Objective: We aim to put into perspective the opportunities Facebook offers as a tool for pediatric rare disease support groups by investigating its use, advantages, and limitations including privacy concerns. We analyze group accessibility and usage, advantages specific to rare diseases, perceived privacy, and views on using Facebook for communication between health professionals and parents, pharmaceutical companies, and study recruitment. Methods: We contacted 12 Facebook support groups for 12 respective rare diseases with pediatric onset and invited group members to participate in a cross-sectional online survey. Results: Of 231 respondents, 87.0% (n=201) of respondents were female, 12.6% (n=29) were male, and 0.4% reported another sex (n=1). Respondents? mean age was 41.56 years (SD 9.375); 91.3% (n=211) of respondents were parents (183 mothers, 27 fathers, 1 other sex); 59.7% (n=138) reported a self-initiated search for the Facebook group, 24.2% (n=56) received recommendations from their health professionals, and 12.6% (n=29) recommendations from someone else affected by the disease. On average, support group members visited Facebook at least once a day, visited and passively participated (read/liked posts) several times a week, and participated actively (commented/posted) once a month. As much as 79.2% (183/231) agreed that they would like to have health professionals as members of the respective Facebook group. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups, with concerns mostly related to Facebook itself and nongroup members. Conclusions: Our study confirmed that Facebook enhances support group accessibility for parents of children with rare diseases. Group participants perceive a reduction and elimination of distance, a common challenge in rare disease, and Facebook support groups create an environment of perceived privacy. The group?s privacy setting can be a critical factor for active support group participation. Sharing personal information and pictures on Facebook is very common among group participants, which shows the importance of discussing and protecting children?s privacy rights in this context. Trial Registration: German Clinical Trials Register DRKS00016067; https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016067 UR - https://pediatrics.jmir.org/2022/1/e31411 UR - http://dx.doi.org/10.2196/31411 UR - http://www.ncbi.nlm.nih.gov/pubmed/34989690 ID - info:doi/10.2196/31411 ER - TY - JOUR AU - Tan, YQ Edina AU - Wee, RE Russell AU - Saw, Ern Young AU - Heng, JQ Kylie AU - Chin, WE Joseph AU - Tong, MW Eddie AU - Liu, CJ Jean PY - 2021/12/23 TI - Tracking Private WhatsApp Discourse About COVID-19 in Singapore: Longitudinal Infodemiology Study JO - J Med Internet Res SP - e34218 VL - 23 IS - 12 KW - social media KW - WhatsApp KW - infodemiology KW - misinformation KW - COVID-19 KW - tracking KW - surveillance KW - app KW - longitudinal KW - Singapore KW - characteristic KW - usage KW - pattern KW - well-being KW - communication KW - risk N2 - Background: Worldwide, social media traffic increased following the onset of the COVID-19 pandemic. Although the spread of COVID-19 content has been described for several social media platforms (eg, Twitter and Facebook), little is known about how such content is spread via private messaging platforms, such as WhatsApp (WhatsApp LLC). Objective: In this study, we documented (1) how WhatsApp is used to transmit COVID-19 content, (2) the characteristics of WhatsApp users based on their usage patterns, and (3) how usage patterns link to COVID-19 concerns. Methods: We used the experience sampling method to track day-to-day WhatsApp usage during the COVID-19 pandemic. For 1 week, participants reported each day the extent to which they had received, forwarded, or discussed COVID-19 content. The final data set comprised 924 data points, which were collected from 151 participants. Results: During the weeklong monitoring process, most participants (143/151, 94.7%) reported at least 1 COVID-19?related use of WhatsApp. When a taxonomy was generated based on usage patterns, around 1 in 10 participants (21/151, 13.9%) were found to have received and shared a high volume of forwarded COVID-19 content, akin to super-spreaders identified on other social media platforms. Finally, those who engaged with more COVID-19 content in their personal chats were more likely to report having COVID-19?related thoughts throughout the day. Conclusions: Our findings provide a rare window into discourse on private messaging platforms. Such data can be used to inform risk communication strategies during the pandemic. Trial Registration: ClinicalTrials.gov NCT04367363; https://clinicaltrials.gov/ct2/show/NCT04367363 UR - https://www.jmir.org/2021/12/e34218 UR - http://dx.doi.org/10.2196/34218 UR - http://www.ncbi.nlm.nih.gov/pubmed/34881720 ID - info:doi/10.2196/34218 ER - TY - JOUR AU - ElSherief, Mai AU - Sumner, A. Steven AU - Jones, M. Christopher AU - Law, K. Royal AU - Kacha-Ochana, Akadia AU - Shieber, Lyna AU - Cordier, LeShaundra AU - Holton, Kelly AU - De Choudhury, Munmun PY - 2021/12/22 TI - Characterizing and Identifying the Prevalence of Web-Based Misinformation Relating to Medication for Opioid Use Disorder: Machine Learning Approach JO - J Med Internet Res SP - e30753 VL - 23 IS - 12 KW - opioid use disorder KW - substance use KW - addiction treatment KW - misinformation KW - social media KW - machine learning KW - natural language processing N2 - Background: Expanding access to and use of medication for opioid use disorder (MOUD) is a key component of overdose prevention. An important barrier to the uptake of MOUD is exposure to inaccurate and potentially harmful health misinformation on social media or web-based forums where individuals commonly seek information. There is a significant need to devise computational techniques to describe the prevalence of web-based health misinformation related to MOUD to facilitate mitigation efforts. Objective: By adopting a multidisciplinary, mixed methods strategy, this paper aims to present machine learning and natural language analysis approaches to identify the characteristics and prevalence of web-based misinformation related to MOUD to inform future prevention, treatment, and response efforts. Methods: The team harnessed public social media posts and comments in the English language from Twitter (6,365,245 posts), YouTube (99,386 posts), Reddit (13,483,419 posts), and Drugs-Forum (5549 posts). Leveraging public health expert annotations on a sample of 2400 of these social media posts that were found to be semantically most similar to a variety of prevailing opioid use disorder?related myths based on representational learning, the team developed a supervised machine learning classifier. This classifier identified whether a post?s language promoted one of the leading myths challenging addiction treatment: that the use of agonist therapy for MOUD is simply replacing one drug with another. Platform-level prevalence was calculated thereafter by machine labeling all unannotated posts with the classifier and noting the proportion of myth-indicative posts over all posts. Results: Our results demonstrate promise in identifying social media postings that center on treatment myths about opioid use disorder with an accuracy of 91% and an area under the curve of 0.9, including how these discussions vary across platforms in terms of prevalence and linguistic characteristics, with the lowest prevalence on web-based health communities such as Reddit and Drugs-Forum and the highest on Twitter. Specifically, the prevalence of the stated MOUD myth ranged from 0.4% on web-based health communities to 0.9% on Twitter. Conclusions: This work provides one of the first large-scale assessments of a key MOUD-related myth across multiple social media platforms and highlights the feasibility and importance of ongoing assessment of health misinformation related to addiction treatment. UR - https://www.jmir.org/2021/12/e30753 UR - http://dx.doi.org/10.2196/30753 UR - http://www.ncbi.nlm.nih.gov/pubmed/34941555 ID - info:doi/10.2196/30753 ER - TY - JOUR AU - Taylor, A. Kimberly AU - Humphrey Jr, F. William PY - 2021/12/22 TI - Impact of Medical Blog Reading and Information Presentation on Readers? Preventative Health Intentions: Mixed Methods, Multistudy Investigation JO - J Med Internet Res SP - e23210 VL - 23 IS - 12 KW - health blogs KW - patient blogs KW - preventative care KW - cancer KW - caregivers KW - perceived risk N2 - Background: Medical blogs have become valuable information sources for patients and caregivers. Most research has focused on patients? creation of blogs as therapy. But we know less about how these blogs affect their readers and what format of information influences readers to take preventative health actions. Objective: This study aimed to identify how reading patient medical blogs influences readers? perceived health risk and their intentions to engage in preventative health actions. Further, we aimed to examine the format of the medical blog and the reader?s response. Methods: We surveyed 99 university participants and a general-population, online panel of 167 participants. Both studies randomly assigned participants to conditions and measured blog evaluation, intentions for preventative health action, and evaluation of health risk and beliefs, and allowed open-ended comments. The second study used a different sample and added a control condition. A third study used a convenience sample of blog readers to evaluate the link between reading medical blogs and taking preventative health action. Results: Across 3 studies, participants indicated a desire to take future preventative health action after reading patient blogs. Studies 1 and 2 used experimental scenario-based designs, while Study 3 employed a qualitative design with real blog readers. The 2 experimental studies showed that the type of blog impacted intentions to engage in future preventative health actions (Study 1: F2,96=6.08, P=.003; Study 2: F3,166=2.59, P=.06), with a statistical blog being most effective in both studies and a personal narrative blog showing similar effectiveness in Study 2, contrary to some prior research. The readers? perceptions of their own health risk did not impact the relationship between the blog type and health intentions. In contrast, in one study, participants? judgments about the barriers they might face to accessing care improved the fit of the model (F2,95=13.57, P<.001). In Study 3?s sample of medical blog readers, 53% (24/45) reported taking preventative health action after reading a health blog, including performing a self-check, asking a doctor about their health risk, or requesting a screening test. Additionally, these readers expressed that they read the blogs to follow the author (patient) and to learn general health information. All studies demonstrated the blogs were somewhat sad and emotional but also informative and well-written. They noted that the blogs made them appreciate life more and motivated them to consider taking some action regarding their health.  Conclusions: Reading patient blogs influences intentions to take future health actions. However, blog formats show different efficacy, and the readers? disease risk perceptions do not. Physicians, medical practitioners, and health organizations may find it useful to curate or promote selected medical blogs to influence patient behavior. UR - https://www.jmir.org/2021/12/e23210 UR - http://dx.doi.org/10.2196/23210 UR - http://www.ncbi.nlm.nih.gov/pubmed/34941543 ID - info:doi/10.2196/23210 ER - TY - JOUR AU - Liu, Jessica AU - Wright, Caroline AU - Williams, Philippa AU - Elizarova, Olga AU - Dahne, Jennifer AU - Bian, Jiang AU - Zhao, Yunpeng AU - Tan, L. Andy S. PY - 2021/12/21 TI - Smokers? Likelihood to Engage With Information and Misinformation on Twitter About the Relative Harms of e-Cigarette Use: Results From a Randomized Controlled Trial JO - JMIR Public Health Surveill SP - e27183 VL - 7 IS - 12 KW - e-cigarettes KW - misinformation KW - Twitter KW - social media N2 - Background: Information and misinformation on the internet about e-cigarette harms may increase smokers? misperceptions of e-cigarettes. There is limited research on smokers? engagement with information and misinformation about e-cigarettes on social media. Objective: This study assessed smokers? likelihood to engage with?defined as replying, retweeting, liking, and sharing?tweets that contain information and misinformation and uncertainty about the harms of e-cigarettes. Methods: We conducted a web-based randomized controlled trial among 2400 UK and US adult smokers who did not vape in the past 30 days. Participants were randomly assigned to view four tweets in one of four conditions: (1) e-cigarettes are as harmful or more harmful than smoking, (2) e-cigarettes are completely harmless, (3) uncertainty about e-cigarette harms, or (4) control (physical activity). The outcome measure was participants? likelihood of engaging with tweets, which comprised the sum of whether they would reply, retweet, like, and share each tweet. We fitted Poisson regression models to predict the likelihood of engagement with tweets among 974 Twitter users and 1287 non-Twitter social media users, adjusting for covariates and stratified by UK and US participants. Results: Among Twitter users, participants were more likely to engage with tweets in condition 1 (e-cigarettes are as harmful or more harmful than smoking) than in condition 2 (e-cigarettes are completely harmless). Among other social media users, participants were more likely to likely to engage with tweets in condition 1 than in conditions 2 and 3 (e-cigarettes are completely harmless and uncertainty about e-cigarette harms). Conclusions: Tweets stating information and misinformation that e-cigarettes were as harmful or more harmful than smoking regular cigarettes may receive higher engagement than tweets indicating e-cigarettes were completely harmless. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN) 16082420; https://doi.org/10.1186/ISRCTN16082420 UR - https://publichealth.jmir.org/2021/12/e27183 UR - http://dx.doi.org/10.2196/27183 UR - http://www.ncbi.nlm.nih.gov/pubmed/34931999 ID - info:doi/10.2196/27183 ER - TY - JOUR AU - Black, Joshua AU - Margolin, R. Zachary AU - Bau, Gabrielle AU - Olson, Richard AU - Iwanicki, L. Janetta AU - Dart, C. Richard PY - 2021/12/20 TI - Web-Based Discussion and Illicit Street Sales of Tapentadol and Oxycodone in Australia: Epidemiological Surveillance Study JO - JMIR Public Health Surveill SP - e29187 VL - 7 IS - 12 KW - Australia KW - opioids KW - web-based discussion KW - diversion N2 - Background: Opioid use disorder and its consequences are a persistent public health concern for Australians. Web activity has been used to understand the perception of drug safety and diversion of drugs in contexts outside of Australia. The anonymity of the internet offers several advantages for surveilling and inquiring about specific covert behaviors, such as diversion or discussion of sensitive subjects where traditional surveillance approaches might be limited. Objective: This study aims to characterize the content of web posts and compare reports of illicit sales of tapentadol and oxycodone from sources originating in Australia. First, post content is evaluated to determine whether internet discussion encourages or discourages proper therapeutic use of the drugs. Second, we hypothesize that tapentadol would have lower street price and fewer illicit sales than oxycodone. Methods: Web posts originating in Australia between 2017 and 2019 were collected using the Researched Abuse, Diversion, and Addiction-Related Surveillance System Web Monitoring Program. Using a manual coding process, unstructured post content from social media, blogs, and forums was categorized into topics of discussion related to the harms and behaviors that could lead to harm. Illicit sales data in a structured format were collected through a crowdsourcing website between 2016 and 2019 using the Researched Abuse, Diversion, and Addiction-Related Surveillance System StreetRx Program. In total, 2 multivariable regression models assessed the differences in illicit price and number of sales. Results: A total of 4.7% (28/600) of tapentadol posts discussed an adverse event, whereas 10.27% (95% CI 9.32-11.21) of oxycodone posts discussed this topic. A total of 10% (60/600) of tapentadol posts discussed unsafe use or side effects, whereas 20.17% (95% CI 18.92-21.41) of oxycodone posts discussed unsafe use or side effects. There were 31 illicit sales reports for tapentadol (geometric mean price per milligram: Aus $0.12 [US $0.09]) and 756 illicit sales reports for oxycodone (Aus $1.28 [US $0.91]). Models detected no differences in the street price or number of sales between the drugs when covariates were included, although the potency of the pill significantly predicted the street price (P<.001) and availability predicted the number of sales (P=.03). Conclusions: Australians searching the web for opinions could judge tapentadol as safer than oxycodone because of the web post content. The illicit sales market for tapentadol was smaller than that of oxycodone, and drug potency and licit availability are likely important factors influencing the illicit market. UR - https://publichealth.jmir.org/2021/12/e29187 UR - http://dx.doi.org/10.2196/29187 UR - http://www.ncbi.nlm.nih.gov/pubmed/34932012 ID - info:doi/10.2196/29187 ER - TY - JOUR AU - Collins-Pisano, Caroline AU - Velez Court, Juan AU - Johnson, Michael AU - Mois, George AU - Brooks, Jessica AU - Myers, Amanda AU - Muralidharan, Anjana AU - Storm, Marianne AU - Wright, Maggie AU - Berger, Nancy AU - Kasper, Ann AU - Fox, Anthony AU - MacDonald, Sandi AU - Schultze, Sarah AU - Fortuna, Karen PY - 2021/12/16 TI - Core Competencies to Promote Consistency and Standardization of Best Practices for Digital Peer Support: Focus Group Study JO - JMIR Ment Health SP - e30221 VL - 8 IS - 12 KW - COVID-19 KW - peer support KW - competencies KW - training KW - digital N2 - Background: As digital peer support is quickly expanding across the globe in the wake of the COVID-19 pandemic, standardization in the training and delivery of digital peer support can advance the professionalism of this field. While telehealth competencies exist for other fields of mental health practice, such as social work, psychiatry, and psychology, limited research has been done to develop and promote digital peer support competencies. Objective: The goal of this study is to introduce the coproduction of core competencies that can guide digital peer support. Methods: Peer support specialists were recruited through an international listserv and participated in a 1-hour virtual focus group. A total of four focus groups were conducted with 59 peer support specialists from 11 US states and three countries. Results: Analysis was conducted using the rigorous and accelerated data reduction (RADaR) technique, and 10 themes were identified: (1) protecting the rights of service users, (2) technical knowledge and skills in the practice of digital peer support, (3) available technologies, (4) equity of access, (5) digital communication skills, (6) performance-based training, (7) self-care, (8) monitoring digital peer support and addressing digital crisis, (9) peer support competencies, and (10) health literacy (emerging). The authors present recommendations based on these themes. Conclusions: The introduction of digital peer support core competencies is an initial first step to promote the standardization of best practices in digital peer support. The established competencies can potentially act as a guide for training and skill development to be integrated into US state peer support specialist competencies and to enhance competencies endorsed by the Substance Abuse and Mental Health Services Administration (SAMHSA). UR - https://mental.jmir.org/2021/12/e30221 UR - http://dx.doi.org/10.2196/30221 UR - http://www.ncbi.nlm.nih.gov/pubmed/34736223 ID - info:doi/10.2196/30221 ER - TY - JOUR AU - Lei, Yuqi AU - Xu, Songhua AU - Zhou, Linyun PY - 2021/12/15 TI - User Behaviors and User-Generated Content in Chinese Online Health Communities: Comparative Study JO - J Med Internet Res SP - e19183 VL - 23 IS - 12 KW - online health community KW - user behaviors KW - user-generated content KW - social network analysis KW - weighted knowledge network N2 - Background: Online health communities (OHCs) have increasingly gained traction with patients, caregivers, and supporters globally. Chinese OHCs are no exception. However, user-generated content (UGC) and the associated user behaviors in Chinese OHCs are largely underexplored and rarely analyzed systematically, forfeiting valuable opportunities for optimizing treatment design and care delivery with insights gained from OHCs. Objective: This study aimed to reveal both the shared and distinct characteristics of 2 popular OHCs in China by systematically and comprehensively analyzing their UGC and the associated user behaviors. Methods: We concentrated on studying the lung cancer forum (LCF) and breast cancer forum (BCF) on Mijian, and the diabetes consultation forum (DCF) on Sweet Home, because of the importance of the 3 diseases among Chinese patients and their prevalence on Chinese OHCs in general. Our analysis explored the key user activities, small-world effect, and scale-free characteristics of each social network. We examined the UGC of these forums comprehensively and adopted the weighted knowledge network technique to discover salient topics and latent relations among these topics on each forum. Finally, we discussed the public health implications of our analysis findings. Results: Our analysis showed that the number of reads per thread on each forum followed gamma distribution (HL=0, HB=0, and HD=0); the number of replies on each forum followed exponential distribution (adjusted RL2=0.946, adjusted RB2=0.958, and adjusted RD2=0.971); and the number of threads a user is involved with (adjusted RL2=0.978, adjusted RB2=0.964, and adjusted RD2=0.970), the number of followers of a user (adjusted RL2=0.989, adjusted RB2=0.962, and adjusted RD2=0.990), and a user?s degrees (adjusted RL2=0.997, adjusted RB2=0.994, and adjusted RD2=0.968) all followed power-law distribution. The study further revealed that users are generally more active during weekdays, as commonly witnessed in all 3 forums. In particular, the LCF and DCF exhibited high temporal similarity (?=0.927; P<.001) in terms of the relative thread posting frequencies during each hour of the day. Besides, the study showed that all 3 forums exhibited the small-world effect (mean ?L=517.15, mean ?B=275.23, and mean ?D=525.18) and scale-free characteristics, while the global clustering coefficients were lower than those of counterpart international OHCs. The study also discovered several hot topics commonly shared among the 3 disease forums, such as disease treatment, disease examination, and diagnosis. In particular, the study found that after the outbreak of COVID-19, users on the LCF and BCF were much more likely to bring up COVID-19?related issues while discussing their medical issues. Conclusions: UGC and related online user behaviors in Chinese OHCs can be leveraged as important sources of information to gain insights regarding individual and population health conditions. Effective and timely mining and utilization of such content can continuously provide valuable firsthand clues for enhancing the situational awareness of health providers and policymakers. UR - https://www.jmir.org/2021/12/e19183 UR - http://dx.doi.org/10.2196/19183 UR - http://www.ncbi.nlm.nih.gov/pubmed/34914615 ID - info:doi/10.2196/19183 ER - TY - JOUR AU - Prusaczyk, Beth AU - Pietka, Kathryn AU - Landman, M. Joshua AU - Luke, A. Douglas PY - 2021/12/15 TI - Utility of Facebook?s Social Connectedness Index in Modeling COVID-19 Spread: Exponential Random Graph Modeling Study JO - JMIR Public Health Surveill SP - e33617 VL - 7 IS - 12 KW - COVID-19 KW - social media KW - social networks KW - network analysis KW - public health KW - utility KW - Facebook KW - connection KW - modeling KW - spread KW - United States KW - belief N2 - Background: The COVID-19 (the disease caused by the SARS-CoV-2 virus) pandemic has underscored the need for additional data, tools, and methods that can be used to combat emerging and existing public health concerns. Since March 2020, there has been substantial interest in using social media data to both understand and intervene in the pandemic. Researchers from many disciplines have recently found a relationship between COVID-19 and a new data set from Facebook called the Social Connectedness Index (SCI). Objective: Building off this work, we seek to use the SCI to examine how social similarity of Missouri counties could explain similarities of COVID-19 cases over time. Additionally, we aim to add to the body of literature on the utility of the SCI by using a novel modeling technique. Methods: In September 2020, we conducted this cross-sectional study using publicly available data to test the association between the SCI and COVID-19 spread in Missouri using exponential random graph models, which model relational data, and the outcome variable must be binary, representing the presence or absence of a relationship. In our model, this was the presence or absence of a highly correlated COVID-19 case count trajectory between two given counties in Missouri. Covariates included each county?s total population, percent rurality, and distance between each county pair. Results: We found that all covariates were significantly associated with two counties having highly correlated COVID-19 case count trajectories. As the log of a county?s total population increased, the odds of two counties having highly correlated COVID-19 case count trajectories increased by 66% (odds ratio [OR] 1.66, 95% CI 1.43-1.92). As the percent of a county classified as rural increased, the odds of two counties having highly correlated COVID-19 case count trajectories increased by 1% (OR 1.01, 95% CI 1.00-1.01). As the distance (in miles) between two counties increased, the odds of two counties having highly correlated COVID-19 case count trajectories decreased by 43% (OR 0.57, 95% CI 0.43-0.77). Lastly, as the log of the SCI between two Missouri counties increased, the odds of those two counties having highly correlated COVID-19 case count trajectories significantly increased by 17% (OR 1.17, 95% CI 1.09-1.26). Conclusions: These results could suggest that two counties with a greater likelihood of sharing Facebook friendships means residents of those counties have a higher likelihood of sharing similar belief systems, in particular as they relate to COVID-19 and public health practices. Another possibility is that the SCI is picking up travel or movement data among county residents. This suggests the SCI is capturing a unique phenomenon relevant to COVID-19 and that it may be worth adding to other COVID-19 models. Additional research is needed to better understand what the SCI is capturing practically and what it means for public health policies and prevention practices. UR - https://publichealth.jmir.org/2021/12/e33617 UR - http://dx.doi.org/10.2196/33617 UR - http://www.ncbi.nlm.nih.gov/pubmed/34797775 ID - info:doi/10.2196/33617 ER - TY - JOUR AU - Parker, K. Jane AU - Kelly, E. Christine AU - Smith, C. Barry AU - Kirkwood, F. Aidan AU - Hopkins, Claire AU - Gane, Simon PY - 2021/12/14 TI - Patients? Perspectives on Qualitative Olfactory Dysfunction: Thematic Analysis of Social Media Posts JO - JMIR Form Res SP - e29086 VL - 5 IS - 12 KW - olfactory dysfunction KW - parosmia KW - phantosmia KW - olfactory perseveration KW - trigger foods KW - mental health KW - COVID-19 KW - patients? perspective KW - thematic analysis KW - social media KW - perspective KW - smell KW - nose KW - symptom KW - concern KW - support N2 - Background: The impact of qualitative olfactory disorders is underestimated. Parosmia, the distorted perception of familiar odors, and phantosmia, the experience of odors in the absence of a stimulus, can arise following postinfectious anosmia, and the incidences of both have increased substantially since the outbreak of COVID-19. Objective: The aims of this study are to explore the symptoms and sequalae of postinfectious olfactory dysfunction syndrome using unstructured and unsolicited threads from social media, and to articulate the perspectives and concerns of patients affected by these debilitating olfactory disorders. Methods: A thematic analysis and content analysis of posts in the AbScent Parosmia and Phantosmia Support group on Facebook was conducted between June and December 2020. Results: In this paper, we identify a novel symptom, olfactory perseveration, which is a triggered, identifiable, and usually unpleasant olfactory percept that persists in the absence of an ongoing stimulus. We also observe fluctuations in the intensity and duration of symptoms of parosmia, phantosmia, and olfactory perseveration. In addition, we identify a group of the most common items (coffee, meat, onion, and toothpaste) that trigger distortions; however, people have difficulty describing these distortions, using words associated with disgust and revulsion. The emotional aspect of living with qualitative olfactory dysfunction was evident and highlighted the detrimental impact on mental health. Conclusions: Qualitative and unsolicited data acquired from social media has provided useful insights into the patient experience of parosmia and phantosmia, which can inform rehabilitation strategies and ongoing research into understanding the molecular triggers associated with parosmic distortions and research into patient benefit. UR - https://formative.jmir.org/2021/12/e29086 UR - http://dx.doi.org/10.2196/29086 UR - http://www.ncbi.nlm.nih.gov/pubmed/34904953 ID - info:doi/10.2196/29086 ER - TY - JOUR AU - Vallury, Dee Kari AU - Baird, Barbara AU - Miller, Emma AU - Ward, Paul PY - 2021/12/13 TI - Going Viral: Researching Safely on Social Media JO - J Med Internet Res SP - e29737 VL - 23 IS - 12 KW - cyber bullying KW - online bullying KW - research activities KW - occupational safety KW - research ethics KW - students KW - bullying KW - social media UR - https://www.jmir.org/2021/12/e29737 UR - http://dx.doi.org/10.2196/29737 UR - http://www.ncbi.nlm.nih.gov/pubmed/34898450 ID - info:doi/10.2196/29737 ER - TY - JOUR AU - Alvarez-Perez, Yolanda AU - Perestelo-Perez, Lilisbeth AU - Rivero-Santana, Amado AU - Wagner, M. Ana AU - Torres-Castaño, Alezandra AU - Toledo-Chávarri, Ana AU - Duarte-Díaz, Andrea AU - Alvarado-Martel, Dácil AU - Piccini, Barbara AU - Van den Broucke, Stephan AU - Vandenbosch, Jessica AU - González-González, Carina AU - Perello, Michelle AU - Serrano-Aguilar, Pedro AU - PY - 2021/12/13 TI - Cocreation of Massive Open Online Courses to Improve Digital Health Literacy in Diabetes: Pilot Mixed Methods Study JO - JMIR Diabetes SP - e30603 VL - 6 IS - 4 KW - diabetes KW - digital health literacy KW - health education KW - MOOC N2 - Background: Self-management education is a fundamental aspect in the health care of people with diabetes to develop the necessary skills for the improvement of health outcomes. Patients are required to have the competencies to manage electronic information resources?that is, an appropriate level of digital health literacy. The European project IC-Health aimed to improve digital health literacy among people with diabetes through the cocreation of massive open online courses (MOOCs). Objective: We report the preliminary results obtained in 3 participating countries in the IC-Health project (Italy, Spain, and Sweden) regarding (1) experience of the participants during the cocreation process of MOOCs, (2) perceived changes in their digital health literacy level after using MOOCs, and (3) a preliminary assessment of the acceptability of MOOCs. Methods: The cocreation of the MOOCs included focus groups with adults and adolescents with diabetes and the creation of independent communities of practice for type 1 diabetes and type 2 diabetes participants aimed to co-design the MOOCs. Quantitative measures of the acceptability of MOOCs, experience in the cocreation process, and increase in digital health literacy (dimensions of finding, understanding, and appraisal) were assessed. Results: A total of 28 participants with diabetes participated in focus groups. Adults and adolescents agreed that the internet is a secondary source of health-related information. A total of 149 participants comprised the diabetes communities of practice. A total of 9 MOOCs were developed. Acceptability of the MOOCs and the cocreation experience were positively valued. There was a significant improvement in digital health literacy in both adults and adolescents after using MOOCs (P<.001). Conclusions: Although the results presented on self-perceived digital health literacy are preliminary and exploratory, this pilot study suggests that IC-Health MOOCs represent a promising tool for the medical care of diabetes, being able to help reduce the limitations associated with low digital health literacy and other communication barriers in the diabetes population. UR - https://diabetes.jmir.org/2021/4/e30603 UR - http://dx.doi.org/10.2196/30603 UR - http://www.ncbi.nlm.nih.gov/pubmed/34898453 ID - info:doi/10.2196/30603 ER - TY - JOUR AU - MacKinnon, Ross Kinnon AU - Kia, Hannah AU - Lacombe-Duncan, Ashley PY - 2021/12/9 TI - Examining TikTok?s Potential for Community-Engaged Digital Knowledge Mobilization With Equity-Seeking Groups JO - J Med Internet Res SP - e30315 VL - 23 IS - 12 KW - trans KW - nonbinary KW - marginalized communities KW - gender-affirming care KW - digital health KW - community-engaged research KW - knowledge mobilization KW - mobile phone UR - https://www.jmir.org/2021/12/e30315 UR - http://dx.doi.org/10.2196/30315 UR - http://www.ncbi.nlm.nih.gov/pubmed/34889739 ID - info:doi/10.2196/30315 ER - TY - JOUR AU - Kalf, J. Rachel R. AU - Delnoij, J. Diana M. AU - Ryll, Bettina AU - Bouvy, L. Marcel AU - Goettsch, G. Wim PY - 2021/12/7 TI - Information Patients With Melanoma Spontaneously Report About Health-Related Quality of Life on Web-Based Forums: Case Study JO - J Med Internet Res SP - e27497 VL - 23 IS - 12 KW - reimbursement decision-making KW - QoL KW - health care KW - quality of life N2 - Background: There is a general agreement on the importance of health-related quality of life (HRQoL). This type of information is becoming increasingly important for the value assessment of health technology assessment agencies in evaluating the benefits of new health technologies, including medicines. However, HRQoL data are often limited, and additional sources that provide this type of information may be helpful. Objective: We aim to identify the HRQoL topics important to patients with melanoma based on web-based discussions on public social media forums. Methods: We identified 3 public web-based forums from the United States and the United Kingdom, namely the Melanoma Patient Information Page, the Melanoma International Forum, and MacMillan. Their posts were randomly selected and coded using qualitative methods until saturation was reached. Results: Of the posts assessed, 36.7% (150/409) of posts on Melanoma International Forum, 45.1% (198/439) on MacMillan, and 35.4% (128/362) on Melanoma Patient Information Page focused on HRQoL. The 2 themes most frequently mentioned were mental health and (un)certainty. The themes were constructed based on underlying and more detailed codes. Codes related to fear, worry and anxiety, uncertainty, and unfavorable effects were the most-often discussed ones. Conclusions: Web-based forums are a valuable source for identifying relevant HRQoL aspects in patients with a given disease. These aspects could be cross-referenced with existing tools and they might improve the content validity of patient-reported outcome measures, including HRQoL questionnaires. In addition, web-based forums may provide health technology assessment agencies with a more holistic understanding of the external aspects affecting patient HRQoL. These aspects might support the value assessment of new health technologies and could therefore help inform topic prioritization as well as the scoping phase before any value assessment. UR - https://www.jmir.org/2021/12/e27497 UR - http://dx.doi.org/10.2196/27497 UR - http://www.ncbi.nlm.nih.gov/pubmed/34878994 ID - info:doi/10.2196/27497 ER - TY - JOUR AU - Dehghani, Mohammad AU - Kahouei, Mehdi AU - Akhondzadeh, Shahin AU - Mesgarpour, Bita AU - Ferdousi, Reza PY - 2021/12/7 TI - Expectations of Health Researchers From Academic Social Network Sites: Qualitative Study JO - J Med Internet Res SP - e24643 VL - 23 IS - 12 KW - research KW - social network KW - academic social network KW - research network KW - academic KW - researcher KW - literature KW - qualitative KW - content analysis N2 - Background: Today, academic social network sites' role in improving the quality of education and how investigators conduct their research has become more critical. Objective: This study aimed to investigate Iranian health researchers' requirements for academic social network sites from a low-income country perspective. Methods: This qualitative study with a phenomenological approach was done in 2020. In this study, 23 researchers in the health system were selected by purposive sampling. Semistructured interviews were used to collect data. Data were analyzed by MaxQDA-10 software and the content analysis method. Results: We identified 2 categories of functional and technical characteristics in the study participants' expectations. Functional characteristics included facilitating communication and team activities, managing scientific publications, enhancing the process of conducting research, being informative, and sharing and trading laboratory materials and equipment. Technical characteristics of an academic social network include user management capabilities, high security and privacy, being user-friendly, and other technical features. Conclusions: Health researchers emphasized 2 functional and technical characteristics required to meet academic social network sites' expectations. UR - https://www.jmir.org/2021/12/e24643 UR - http://dx.doi.org/10.2196/24643 UR - http://www.ncbi.nlm.nih.gov/pubmed/34878993 ID - info:doi/10.2196/24643 ER - TY - JOUR AU - Abdel-Razig, Sawsan AU - Anglade, Pascale AU - Ibrahim, Halah PY - 2021/12/7 TI - Impact of the COVID-19 Pandemic on a Physician Group?s WhatsApp Chat: Qualitative Content Analysis JO - JMIR Form Res SP - e31791 VL - 5 IS - 12 KW - WhatsApp KW - social media KW - physician KW - pandemic KW - COVID-19 KW - qualitative KW - communication KW - misinformation KW - information-seeking behavior KW - information seeking KW - information sharing KW - content analysis KW - community N2 - Background: Social media has emerged as an effective means of information sharing and community building among health professionals. The utility of these platforms is likely heightened during times of health system crises and global uncertainty. Studies have demonstrated that physicians? social media platforms serve to bridge the gap of information between on-the-ground experiences of health care workers and emerging knowledge. Objective: The primary aim of this study was to characterize the use of a physician WhatsApp (WhatsApp LLC) group chat during the early months of the COVID-19 pandemic. Methods: Through the lens of the social network theory, we performed a qualitative content analysis of the posts of a women physician WhatsApp group located in the United Arab Emirates between February 1, 2020, and May 31, 2020, that is, during the initial surge of COVID-19 cases. Results: There were 6101 posts during the study period, which reflected a 2.6-fold increase in platform use when compared with platform use in the year prior. A total of 8 themes and 9 subthemes were described. The top 3 uses of the platform were requests for information (posts: 2818/6101, 46.2%), member support and promotion (posts: 988/6101, 16.2%), and information sharing (posts: 896/6101, 14.7%). A substantial proportion of posts were related to COVID-19 (2653/6101, 43.5%), with the most popular theme being requests for logistical (nonmedical) information. Among posts containing COVID-19?related medical information, it was notable that two-thirds (571/868, 65.8%) of these posts were from public mass media or unverified sources. Conclusions: Health crises can potentiate the use of social media platforms among physicians. This reflects physicians? tendency to turn to these platforms for information sharing and community building purposes. However, important questions remain regarding the accuracy and credibility of the information shared. Our findings suggest that the training of physicians in social media practices and information dissemination may be needed. UR - https://formative.jmir.org/2021/12/e31791 UR - http://dx.doi.org/10.2196/31791 UR - http://www.ncbi.nlm.nih.gov/pubmed/34784291 ID - info:doi/10.2196/31791 ER - TY - JOUR AU - Oksanen, Atte AU - Oksa, Reetta AU - Savela, Nina AU - Celuch, Magdalena AU - Savolainen, Iina PY - 2021/12/2 TI - Drinking and Social Media Use Among Workers During COVID-19 Pandemic Restrictions: Five-Wave Longitudinal Study JO - J Med Internet Res SP - e33125 VL - 23 IS - 12 KW - excessive drinking KW - alcohol KW - COVID-19 KW - social media KW - remote work KW - psychological distress KW - distress KW - pattern KW - trend KW - prediction KW - survey KW - app KW - risk N2 - Background: The COVID-19 pandemic restricted everyday life during 2020-2021 for many people worldwide. It also affected alcohol consumption patterns and leisure activities, including the use of social media. Objective: The aim of this study was to analyze whether social media use predicts increased risky drinking over time and during the COVID-19 pandemic restrictions in particular. Methods: This 5-wave longitudinal survey study, based on a nationwide sample of workers, was conducted in Finland in 2019-2021. A total of 840 respondents (male: 473/840, 56.31%; age range 18-64 years; mean age 43.90, SD 11.14 years) participated in all 5 waves of the study. The outcome variable was risky drinking, measured using the 3-item Alcohol Use Disorders Identification Test (AUDIT-C). Multilevel linear hybrid modeling enabled the investigation of both within-person and between-person effects. Predictors included social media use and communication, involvement in social media identity bubbles, psychological distress, and remote working. Controls included sociodemographic factors and the Big Five personality traits. Results: Increased involvement in social media identity bubbles was associated with an increase in risky drinking behavior. Of all social media platforms examined, online dating app use was associated with riskier use of alcohol over time during the COVID-19 crisis. Daily social media communication with colleagues about nonwork topics was associated with risky drinking. Female gender, younger age, university education, nonindustrial occupational field, conscientiousness, agreeableness, and neuroticism were associated with lower levels of risky drinking. Conclusions: Social media use during a pandemic carries some risks for alcohol consumption. Involvement in social media identity bubbles and online dating are risk factors for excessive drinking during the COVID-19 pandemic. UR - https://www.jmir.org/2021/12/e33125 UR - http://dx.doi.org/10.2196/33125 UR - http://www.ncbi.nlm.nih.gov/pubmed/34662290 ID - info:doi/10.2196/33125 ER - TY - JOUR AU - Luquiens, Amandine AU - von Hammerstein, Cora AU - Benyamina, Amine AU - Perney, Pascal PY - 2021/11/26 TI - Burden and Help-Seeking Behaviors Linked to Problem Gambling and Gaming: Observational Quantitative and Qualitative Analysis JO - JMIR Ment Health SP - e26521 VL - 8 IS - 11 KW - gambling KW - gaming KW - helpline KW - burden, relatives KW - qualitative research N2 - Background: Models based on the uniqueness of addiction processes between behavioral addictions are highly contentious, and the inclusion of gaming disorder in the addiction nosography remains controversial. An exploratory approach could clarify a hypothesized common and subjectively identifiable process in addictive behaviors and the necessarily different expressions of the disorder due to behavior specificities, in particular the sociocultural characteristics and profiles of users. Objective: The aim of this study was to describe the nature of contacts to a help service by exploring commonality and specificities of burden and help-seeking for problem gambling or gaming. Methods: This was an observational quantitative-qualitative study. We included all contacts (ie, online questions and contacts by phone or chat when the helper completed a summary) to a helpline for gamers, gamblers, and relatives over a 7-year period. We constituted a text corpus with online questions and summaries of contacts by phone or chat. We collected basic sociodemographic data, including the device used to contact the service (phone or internet), contacting the service for oneself (?user?) or being a relative of a user and type of relative, gambling (yes/no), gaming (yes/no), and age and sex of the gambler/gamer. We describe the corpus descriptively and report the computerized qualitative analysis of online questions, chat, and summary of phone calls. We performed a descendant hierarchical analysis on the data. Results: A total of 14,564 contacts were made to the helpline, including 10,017 users and 4547 relatives. The corpus was composed of six classes: (1) gaming specificities, (2) shared psychological distress and negative emotions, (3) the procedure for being banned from gambling, (4) the provided help, (5) gambling specificities, and (6) financial problems. Conclusions: Negative emotions and shared distress linked to gambling and gaming support current scientific consensus that these behaviors can produce psychological distress in se; however, meaningful differences were observed in core symptoms of addiction between gamers and gamblers, beyond specificities related to the behavior itself: loss of control was elicited in the class corresponding to gambling specificities and not by gamers and their relatives. UR - https://mental.jmir.org/2021/11/e26521 UR - http://dx.doi.org/10.2196/26521 UR - http://www.ncbi.nlm.nih.gov/pubmed/34842562 ID - info:doi/10.2196/26521 ER - TY - JOUR AU - Boettcher, Nick PY - 2021/11/25 TI - Studies of Depression and Anxiety Using Reddit as a Data Source: Scoping Review JO - JMIR Ment Health SP - e29487 VL - 8 IS - 11 KW - depression KW - anxiety KW - mental health KW - Reddit KW - social media KW - review N2 - Background: The study of depression and anxiety using publicly available social media data is a research activity that has grown considerably over the past decade. The discussion platform Reddit has become a popular social media data source in this nascent area of study, in part because of the unique ways in which the platform is facilitative of research. To date, no work has been done to synthesize existing studies on depression and anxiety using Reddit. Objective: The objective of this review is to understand the scope and nature of research using Reddit as a primary data source for studying depression and anxiety. Methods: A scoping review was conducted using the Arksey and O?Malley framework. MEDLINE, Embase, CINAHL, PsycINFO, PsycARTICLES, Scopus, ScienceDirect, IEEE Xplore, and ACM academic databases were searched. Inclusion criteria were developed using the participants, concept, and context framework outlined by the Joanna Briggs Institute Scoping Review Methodology Group. Eligible studies featured an analytic focus on depression or anxiety and used naturalistic written expressions from Reddit users as a primary data source. Results: A total of 54 studies were included in the review. Tables and corresponding analyses delineate the key methodological features, including a comparatively larger focus on depression versus anxiety, an even split of original and premade data sets, a widespread analytic focus on classifying the mental health states of Reddit users, and practical implications that often recommend new methods of professionally delivered monitoring and outreach for Reddit users. Conclusions: Studies of depression and anxiety using Reddit data are currently driven by a prevailing methodology that favors a technical, solution-based orientation. Researchers interested in advancing this research area will benefit from further consideration of conceptual issues surrounding the interpretation of Reddit data with the medical model of mental health. Further efforts are also needed to locate accountability and autonomy within practice implications, suggesting new forms of engagement with Reddit users. UR - https://mental.jmir.org/2021/11/e29487 UR - http://dx.doi.org/10.2196/29487 UR - http://www.ncbi.nlm.nih.gov/pubmed/34842560 ID - info:doi/10.2196/29487 ER - TY - JOUR AU - Singh, Tavleen AU - Olivares, Sofia AU - Cohen, Trevor AU - Cobb, Nathan AU - Wang, Jing AU - Franklin, Amy AU - Myneni, Sahiti PY - 2021/11/17 TI - Pragmatics to Reveal Intent in Social Media Peer Interactions: Mixed Methods Study JO - J Med Internet Res SP - e32167 VL - 23 IS - 11 KW - online health communities KW - diabetes self-management KW - tobacco cessation KW - speech acts KW - behavior change KW - communication themes N2 - Background: Online health communities (OHCs) have emerged as the leading venues for behavior change and health-related information seeking. The soul and success of these digital platforms lie in their ability to foster social togetherness and a sense of community by providing personalized support. However, we have a minimal understanding of how conversational posts in these settings lead to collaborative societies and ultimately result in positive health changes through social influence. Objective: Our objective is to develop a content-specific and intent-sensitive methodological framework for analyzing peer interactions in OHCs. Methods: We developed and applied a mixed-methods approach to understand the manifestation of expressions in peer interactions in OHCs. We applied our approach to describe online social dialogue in the context of two online communities, QuitNet (QN) and the American Diabetes Association (ADA) support community. A total of 3011 randomly selected peer interactions (n=2005 from QN, n=1006 from ADA) were analyzed. Specifically, we conducted thematic analysis to characterize communication content and linguistic expressions (speech acts) embedded within the two data sets. We also developed an empirical user persona based on their engagement levels and behavior profiles. Further, we examined the association between speech acts and communication themes across observed tiers of user engagement and self-reported behavior profiles using the chi-square test or the Fisher test. Results: Although social support, the most prevalent communication theme in both communities, was expressed in several subtle manners, the prevalence of emotions was higher in the tobacco cessation community and assertions were higher in the diabetes self-management (DSM) community. Specific communication theme-speech act relationships were revealed, such as the social support theme was significantly associated (P<.05) with 9 speech acts from a total of 10 speech acts (ie, assertion, commissive, declarative, desire, directive, expressive, question, stance, and statement) within the QN community. Only four speech acts (ie, commissive, emotion, expressive, and stance) were significantly associated (P<.05) with the social support theme in the ADA community. The speech acts were also significantly associated with the users? abstinence status within the QN community and with the users? lifestyle status within the ADA community (P<.05). Conclusions: Such an overlay of communication intent implicit in online peer interactions alongside content-specific theory-linked characterizations of social media discourse can inform the development of effective digital health technologies in the field of health promotion and behavior change. Our analysis revealed a rich gradient of expressions across a standardized thematic vocabulary, with a distinct variation in emotional and informational needs, depending on the behavioral and disease management profiles within and across the communities. This signifies the need and opportunities for coupling pragmatic messaging in digital therapeutics and care management pathways for personalized support. UR - https://www.jmir.org/2021/11/e32167 UR - http://dx.doi.org/10.2196/32167 UR - http://www.ncbi.nlm.nih.gov/pubmed/34787578 ID - info:doi/10.2196/32167 ER - TY - JOUR AU - Sinclair, Marlene AU - McCullough, M. Julie E. AU - Elliott, David AU - Braz, Paula AU - Cavero-Carbonell, Clara AU - Dornan, Lesley AU - Jamry-Dziurla, Anna AU - João Santos, Ana AU - Latos-Biele?ska, Anna AU - Machado, Ausenda AU - Páramo-Rodríguez, Lucía PY - 2021/11/15 TI - Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study JO - JMIR Pediatr Parent SP - e18483 VL - 4 IS - 4 KW - Facebook KW - YouTube KW - Twitter KW - social media KW - metrics KW - e-forum KW - congenital anomalies KW - coproduction KW - COVID-19 N2 - Background: Limited research evidence exists on the development of web-based platforms for reciprocal communication, coproduction research, and dissemination of information among parents, professionals, and researchers. This paper provides learning and the outcomes of setting up a bespoke web-based platform using social media. Objective: This study aims to explore the establishment of a web-based, multicontextual research communication platform for parents and stakeholders of children with congenital anomalies using social media and to identify associated research and ethical and technical challenges. Methods: The ConnectEpeople e-forum was developed using social media platforms with a stakeholder engagement process. A multilevel approach was implemented for reciprocal engagement between parents of children with congenital anomalies, researchers, health care professionals, and other stakeholders using private and invisible and public Facebook groups, closed Twitter groups, and YouTube. Ethical approval was obtained from Ulster University. Results: Nonprofit organizations (N=128) were invited to engage with an initial response rate of 16.4% (21/128). Of the 105 parents contacted, 32 entered the private and invisible Facebook groups to participate in the coproduction research. Public Facebook page followers rose to 215, a total of 22 posts had an engagement of >10%, and 34 posts had a reach of over 100. Webinars included requested information on childhood milestones and behavior. YouTube coverage included 106 ConnectEpeople videos with 28,708 impressions. Project information was obtained from 35 countries. The highest Facebook activity occurred during the early morning hours. Achievement of these results required dedicated time management, social media expertise, creativity, and sharing knowledge to curate valuable content. Conclusions: Building and maintaining a multilayered online forum for coproduction and information sharing is challenging. Technical considerations include understanding the functionality and versatility of social media metrics. Social media offers valuable, easily accessible, quantitative, and qualitative data that can drive the reciprocal process of forum development. The identification and integration of the needs of the ConnectEpeople e-forum was a key driver in the dissemination of useful, meaningful, and accessible information. The necessary dedicated administration to respond to requests and posts and collate data required significant time and effort. Participant safety, the development of trust, and the maintenance of confidentiality were major ethical considerations. Discussions on social media platforms enabled parents to support each other and their children. Social media platforms are particularly useful in identifying common family needs related to early childhood development. This research approach was challenging but resulted in valuable outputs requiring further application and testing. This may be of particular importance in response to COVID-19 or future pandemics. Incorporating flexible, adaptable social media strategies into research projects is recommended to develop effective platforms for collaborative and impactful research and dissemination. UR - https://pediatrics.jmir.org/2021/4/e18483 UR - http://dx.doi.org/10.2196/18483 UR - http://www.ncbi.nlm.nih.gov/pubmed/34779778 ID - info:doi/10.2196/18483 ER - TY - JOUR AU - Hendriks, Hanneke AU - de Nooy, Wouter AU - Gebhardt, A. Winifred AU - van den Putte, Bas PY - 2021/11/11 TI - Causal Effects of Alcohol-Related Facebook Posts on Drinking Behavior: Longitudinal Experimental Study JO - J Med Internet Res SP - e28237 VL - 23 IS - 11 KW - social media KW - social networking site (SNS) KW - alcohol-related posts KW - alcoholposts KW - alcohol consumption N2 - Background: Adolescents and young adults frequently post alcohol-related content (ie, alcoholposts) on social media. This is problematic because both social norms theory and social learning theory suggest that viewing alcoholposts of peers could increase drinking behavior. It is therefore paramount to understand the effects of exposure to alcoholposts on viewers. Objective: This study aimed to investigate the causal effects of exposure to alcoholposts on alcohol consumption by using a rigorous design. Methods: We conducted a 6-week longitudinal study during which alcoholposts were measured by a newly developed app that copied Facebook posts shared by participants (n=281) to a new social media environment. In addition, daily questionnaires assessed alcohol use. Effects of natural alcoholposts (ie, posted by the participants) were assessed in phase 1, and effects of experimental posts (ie, posted by fake participants) were explored in phase 2. Results: Results showed that natural alcoholposts increased the occurrence and quantity of drinking the following day. That is, exposure to a single additional alcoholpost increased the log odds of drinking the next day by 0.27 (b=.27, credible interval [CI] .18 to .35). Furthermore, the number of natural alcoholposts had a positive (predictive) effect on the number of glasses drunk the next day (b=.21, CI .14 to .29). In phase 2 when experimental posts were also present, these effects decreased. Experimental posts themselves had hardly any effects. Conclusions: This study illustrates clear and direct effects of exposure to alcoholposts on next-day alcohol consumption and suggests that alcoholposts represent an important societal problem that interventions need to address. UR - https://www.jmir.org/2021/11/e28237 UR - http://dx.doi.org/10.2196/28237 UR - http://www.ncbi.nlm.nih.gov/pubmed/34762061 ID - info:doi/10.2196/28237 ER - TY - JOUR AU - Freeman, Benjamin Tobe Che AU - Rodriguez-Esteban, Raul AU - Gottowik, Juergen AU - Yang, Xing AU - Erpenbeck, Johannes Veit AU - Leddin, Mathias PY - 2021/11/11 TI - A Neural Network Approach for Understanding Patient Experiences of Chronic Obstructive Pulmonary Disease (COPD): Retrospective, Cross-sectional Study of Social Media Content JO - JMIR Med Inform SP - e26272 VL - 9 IS - 11 KW - outcomes research KW - natural language processing KW - neural networks (computer) KW - social media KW - exercise KW - sleep deprivation KW - social media listening KW - drug development N2 - Background: The abundance of online content contributed by patients is a rich source of insight about the lived experience of disease. Patients share disease experiences with other members of the patient and caregiver community and do so using their own lexicon of words and phrases. This lexicon and the topics that are communicated using words and phrases belonging to the lexicon help us better understand disease burden. Insights from social media may ultimately guide clinical development in ways that ensure that future treatments are fit for purpose from the patient?s perspective. Objective: We sought insights into the patient experience of chronic obstructive pulmonary disease (COPD) by analyzing a substantial corpus of social media content. The corpus was sufficiently large to make manual review and manual coding all but impossible to perform in a consistent and systematic fashion. Advanced analytics were applied to the corpus content in the search for associations between symptoms and impacts across the entire text corpus. Methods: We conducted a retrospective, cross-sectional study of 5663 posts sourced from open blogs and online forum posts published by COPD patients between February 2016 and August 2019. We applied a novel neural network approach to identify a lexicon of community words and phrases used by patients to describe their symptoms. We used this lexicon to explore the relationship between COPD symptoms and disease-related impacts. Results: We identified a diverse lexicon of community words and phrases for COPD symptoms, including gasping, wheezy, mucus-y, and muck. These symptoms were mentioned in association with specific words and phrases for disease impact such as frightening, breathing discomfort, and difficulty exercising. Furthermore, we found an association between mucus hypersecretion and moderate disease severity, which distinguished mucus from the other main COPD symptoms, namely breathlessness and cough. Conclusions: We demonstrated the potential of neural networks and advanced analytics to gain patient-focused insights about how each distinct COPD symptom contributes to the burden of chronic and acute respiratory illness. Using a neural network approach, we identified words and phrases for COPD symptoms that were specific to the patient community. Identifying patterns in the association between symptoms and impacts deepened our understanding of the patient experience of COPD. This approach can be readily applied to other disease areas. UR - https://medinform.jmir.org/2021/11/e26272 UR - http://dx.doi.org/10.2196/26272 UR - http://www.ncbi.nlm.nih.gov/pubmed/34762056 ID - info:doi/10.2196/26272 ER - TY - JOUR AU - Mulgund, Pavankumar AU - Sharman, Raj AU - Purao, Sandeep AU - Thimmanayakanapalya, Suresh Sagarika AU - Winkelstein, Peter PY - 2021/11/10 TI - Mapping Information Needs of Patients With Sexually Transmitted Infections Using Web-Based Data Sources: Grounded Theory Investigation JO - J Med Internet Res SP - e30125 VL - 23 IS - 11 KW - information needs KW - sexually transmitted diseases KW - patient journey maps KW - health information seeking KW - stigmatizing disorders KW - online forum KW - sexually transmitted infection KW - American Sexual Health Association KW - grounded theory KW - stigma N2 - Background: According to the World health organization (WHO), more than 1 million sexually transmitted infections (STIs) are acquired each day across the world. The incidence rates of STIs in the United States are at a record high for the fourth consecutive year. Owing to the stigma associated with the incidence of STI, there is a general reluctance to seek information in person. Instead, web-based information sources remain the primary avenues of information-seeking. However, these sources are designed without a comprehensive understanding of the information needs of individuals who have contracted STIs. Objective: This study aimed to investigate the information needs of individuals who have or suspect they have contracted an STI. A better understanding of their information needs can drive the design of more effective digital interventions. Methods: This is a qualitative and analytical study of 549 transcripts (consisting of queries posted over the last 10 years) from web-based forums of the American Sexual Health Association (ASHA), which allows patients, volunteers, and health care providers connect anonymously. The analysis follows a grounded theory (GT) approach with multiple coding stages to uncover categories and themes. Results: Three categories of information needs emerged. The first two, clinical and logistical, are similar to other contexts. However, our analysis shows that there is a significant need for the last category?psychosocial information. Approximately 59% of instances are linked to concerns such as confusion, discretion, remorse, and others. These needs vary across the stages of a patient?s journey from symptom manifestation to treatment maintenance. Conclusions: Responding to the needs of individuals who have or suspect they have contracted an STI requires compassionate and personalized responses (beyond factual clinical and logistical information). Web-based forums provide anonymity but do not adequately incorporate mechanisms, practices, or incentives to respond to diverse psychosocial concerns. Innovative approaches to add such support can make the digital interventions more effective for this group of individuals. UR - https://www.jmir.org/2021/11/e30125 UR - http://dx.doi.org/10.2196/30125 UR - http://www.ncbi.nlm.nih.gov/pubmed/34757326 ID - info:doi/10.2196/30125 ER - TY - JOUR AU - Chen, Liang AU - Wang, Pianpian AU - Ma, Xin AU - Wang, Xiaohui PY - 2021/11/10 TI - Cancer Communication and User Engagement on Chinese Social Media: Content Analysis and Topic Modeling Study JO - J Med Internet Res SP - e26310 VL - 23 IS - 11 KW - cancer-related information KW - social media KW - topic modeling KW - user engagement KW - Weibo KW - cancer N2 - Background: Cancer ranks among the most serious public health challenges worldwide. In China?the world?s most populous country?about one-quarter of the population consists of people with cancer. Social media has become an important platform that the Chinese public uses to express opinions. Objective: We investigated cancer-related discussions on the Chinese social media platform Weibo (Sina Corporation) to identify cancer topics that generate the highest levels of user engagement. Methods: We conducted topic modeling and regression analyses to analyze and visualize cancer-related messages on Weibo and to examine the relationships between different cancer topics and user engagement (ie, the number of retweets, comments, and likes). Results: Our results revealed that cancer communication on Weibo has generally focused on the following six topics: social support, cancer treatment, cancer prevention, women?s cancers, smoking and skin cancer, and other topics. Discussions about social support and cancer treatment attracted the highest number of users and received the greatest numbers of retweets, comments, and likes. Conclusions: Our investigation of cancer-related communication on Weibo provides valuable insights into public concerns about cancer and can help guide the development of health campaigns in social media. UR - https://www.jmir.org/2021/11/e26310 UR - http://dx.doi.org/10.2196/26310 UR - http://www.ncbi.nlm.nih.gov/pubmed/34757320 ID - info:doi/10.2196/26310 ER - TY - JOUR AU - Wang, Jie AU - Wang, Xin AU - Wang, Lei AU - Peng, Yan PY - 2021/11/8 TI - Health Information Needs of Young Chinese People Based on an Online Health Community: Topic and Statistical Analysis JO - JMIR Med Inform SP - e30356 VL - 9 IS - 11 KW - information needs KW - young people KW - online health community KW - topic analysis N2 - Background: The internet has been widely accessible and well accepted by young people; however, there is a limited understanding of the internet usage patterns and characteristics on issues related to health problems. The contents posted on online health communities (OHCs) are valuable resources to learn about youth's health information needs. Objective: In this study, we concurrently exploited statistical analysis and topic analysis of online health information needs to explore the distribution, impact factors, and topics of interest relevant to Chinese young people. Methods: We collected 60,478 health-related data sets posted by young people from a well-known Chinese OHC named xywy.com. Descriptive statistical analysis and correlation analysis were applied to find the distribution and influence factors of the information needs of Chinese young people. Furthermore, a general 4-step topic mining strategy was presented for sparse short texts, which included sentence vectorization, dimension reduction, clustering, and keyword generation. Results: In the Chinese OHC, Chinese young people had a high demand for information in the areas of gynecology and obstetrics, internal medicine, dermatology, plastic surgery, and surgery, and they focused on topics such as treatment, symptoms, causes, pathology, and diet. Females accounted for 69.67% (42,136/60,478) and young adults accounted for 87.44% (52,882/60,478) of all data. Gender, age, and disease type all had a significant effect on young people's information needs and topic preferences (P<.001). Conclusions: We conducted comprehensive analyses to discover the online health information needs of Chinese young people. The research findings are of great practical value to carry out health education and health knowledge dissemination inside and outside of schools according to the interests of youth, enable the innovation of information services in OHCs, and improve the health literacy of young people. UR - https://medinform.jmir.org/2021/11/e30356 UR - http://dx.doi.org/10.2196/30356 UR - http://www.ncbi.nlm.nih.gov/pubmed/34747707 ID - info:doi/10.2196/30356 ER - TY - JOUR AU - Chancellor, Stevie AU - Sumner, A. Steven AU - David-Ferdon, Corinne AU - Ahmad, Tahirah AU - De Choudhury, Munmun PY - 2021/11/8 TI - Suicide Risk and Protective Factors in Online Support Forum Posts: Annotation Scheme Development and Validation Study JO - JMIR Ment Health SP - e24471 VL - 8 IS - 11 KW - online communities KW - suicide crisis KW - construct validity KW - annotation scheme KW - Reddit KW - annotation N2 - Background: Online communities provide support for individuals looking for help with suicidal ideation and crisis. As community data are increasingly used to devise machine learning models to infer who might be at risk, there have been limited efforts to identify both risk and protective factors in web-based posts. These annotations can enrich and augment computational assessment approaches to identify appropriate intervention points, which are useful to public health professionals and suicide prevention researchers. Objective: This qualitative study aims to develop a valid and reliable annotation scheme for evaluating risk and protective factors for suicidal ideation in posts in suicide crisis forums. Methods: We designed a valid, reliable, and clinically grounded process for identifying risk and protective markers in social media data. This scheme draws on prior work on construct validity and the social sciences of measurement. We then applied the scheme to annotate 200 posts from r/SuicideWatch?a Reddit community focused on suicide crisis. Results: We documented our results on producing an annotation scheme that is consistent with leading public health information coding schemes for suicide and advances attention to protective factors. Our study showed high internal validity, and we have presented results that indicate that our approach is consistent with findings from prior work. Conclusions: Our work formalizes a framework that incorporates construct validity into the development of annotation schemes for suicide risk on social media. This study furthers the understanding of risk and protective factors expressed in social media data. This may help public health programming to prevent suicide and computational social science research and investigations that rely on the quality of labels for downstream machine learning tasks. UR - https://mental.jmir.org/2021/11/e24471 UR - http://dx.doi.org/10.2196/24471 UR - http://www.ncbi.nlm.nih.gov/pubmed/34747705 ID - info:doi/10.2196/24471 ER - TY - JOUR AU - El Morr, Christo AU - Maret, Pierre AU - Muhlenbach, Fabrice AU - Dharmalingam, Dhayananth AU - Tadesse, Rediet AU - Creighton, Alexandra AU - Kundi, Bushra AU - Buettgen, Alexis AU - Mgwigwi, Thumeka AU - Dinca-Panaitescu, Serban AU - Dua, Enakshi AU - Gorman, Rachel PY - 2021/11/5 TI - A Virtual Community for Disability Advocacy: Development of a Searchable Artificial Intelligence?Supported Platform JO - JMIR Form Res SP - e33335 VL - 5 IS - 11 KW - virtual community KW - machine learning KW - Semantic Web KW - natural language processing KW - web intelligence KW - health informatics KW - Wikibase KW - disability rights KW - human rights KW - CRPD KW - equity KW - community KW - disability KW - ethics KW - rights KW - pilot KW - platform N2 - Background: The lack of availability of disability data has been identified as a major challenge hindering continuous disability equity monitoring. It is important to develop a platform that enables searching for disability data to expose systemic discrimination and social exclusion, which increase vulnerability to inequitable social conditions. Objective: Our project aims to create an accessible and multilingual pilot disability website that structures and integrates data about people with disabilities and provides data for national and international disability advocacy communities. The platform will be endowed with a document upload function with hybrid (automated and manual) paragraph tagging, while the querying function will involve an intelligent natural language search in the supported languages. Methods: We have designed and implemented a virtual community platform using Wikibase, Semantic Web, machine learning, and web programming tools to enable disability communities to upload and search for disability documents. The platform data model is based on an ontology we have designed following the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The virtual community facilitates the uploading and sharing of validated information, and supports disability rights advocacy by enabling dissemination of knowledge. Results: Using health informatics and artificial intelligence techniques (namely Semantic Web, machine learning, and natural language processing techniques), we were able to develop a pilot virtual community that supports disability rights advocacy by facilitating uploading, sharing, and accessing disability data. The system consists of a website on top of a Wikibase (a Semantic Web?based datastore). The virtual community accepts 4 types of users: information producers, information consumers, validators, and administrators. The virtual community enables the uploading of documents, semiautomatic tagging of their paragraphs with meaningful keywords, and validation of the process before uploading the data to the disability Wikibase. Once uploaded, public users (information consumers) can perform a semantic search using an intelligent and multilingual search engine (QAnswer). Further enhancements of the platform are planned. Conclusions: The platform ontology is flexible and can accommodate advocacy reports and disability policy and legislation from specific jurisdictions, which can be accessed in relation to the CRPD articles. The platform ontology can be expanded to fit international contexts. The virtual community supports information upload and search. Semiautomatic tagging and intelligent multilingual semantic search using natural language are enabled using artificial intelligence techniques, namely Semantic Web, machine learning, and natural language processing. UR - https://formative.jmir.org/2021/11/e33335 UR - http://dx.doi.org/10.2196/33335 UR - http://www.ncbi.nlm.nih.gov/pubmed/34738910 ID - info:doi/10.2196/33335 ER - TY - JOUR AU - Meleo-Erwin, C. Zoe AU - Basch, H. Corey AU - Fera, Joseph AU - Smith, Bonnie PY - 2021/11/1 TI - Discussion of Weight Loss Surgery in Instagram Posts: Successive Sampling Study JO - JMIR Perioper Med SP - e29390 VL - 4 IS - 2 KW - bariatric surgery KW - social media KW - Instagram KW - health promotion KW - post-operative medicine KW - online health information KW - information accuracy KW - surgery KW - information quality N2 - Background: The majority of American adults search for health and illness information on the internet. However, the quality and accuracy of this information are notoriously variable. With the advent of social media, US individuals have increasingly shared their own health and illness experiences, including those related to bariatric surgery, on social media platforms. Previous research has found that peer-to-peer requesting and giving of advice related to bariatric surgery on social media is common, that such advice is often presented in stark terms, and that the advice may not reflect patient standards of care. These previous investigations have helped to map bariatric surgery content on Facebook and YouTube. Objective: This objective of this study was to document and compare weight loss surgery (WLS)?related content on Instagram in the months leading up to the COVID-19 pandemic and 1 year later. Methods: We analyzed a total of 300 Instagram posts (50 posts per week for 3 consecutive weeks in late February and early March in both 2020 and 2021) uploaded using the hashtag #wls. Descriptive statistics were reported, and independent 1-tailed chi-square tests were used to determine if a post?s publication year statistically affected its inclusion of a particular type of content. Results: Overall, advice giving and personal responsibility for outcomes were emphasized by WLS posters on Instagram. However, social support was less emphasized. The safety, challenges, and risks associated with WLS were rarely discussed. The majority of posts did not contain references to facts from reputable medical sources. Posts published in 2021 were more likely to mention stress/hardships of living with WLS (45/150, 30%, vs 29/150, 19.3%; P=.03); however, those published in 2020 more often identified the importance of ongoing support for WLS success (35/150, 23.3%, vs 16/150, 10.7%; P=.004). Conclusions: Given that bariatric patients have low rates of postoperative follow-up, yet post-operative care and yet support are associated with improved health and weight loss outcomes, and given that health content on the web is of mixed accuracy, bariatric professionals may wish to consider including an online support forum moderated by a professional as a routine part of postoperative care. Doing so may not only improve follow-up rates but may offer providers the opportunity to counter inaccuracies encountered on social media. UR - https://periop.jmir.org/2021/2/e29390 UR - http://dx.doi.org/10.2196/29390 UR - http://www.ncbi.nlm.nih.gov/pubmed/34723828 ID - info:doi/10.2196/29390 ER - TY - JOUR AU - Haupt, Robert Michael AU - Xu, Qing AU - Yang, Joshua AU - Cai, Mingxiang AU - Mackey, K. Tim PY - 2021/10/29 TI - Characterizing Vaping Industry Political Influence and Mobilization on Facebook: Social Network Analysis JO - J Med Internet Res SP - e28069 VL - 23 IS - 10 KW - vaping KW - alternative tobacco industry KW - e-cigarettes KW - Facebook KW - social network analysis KW - social networks KW - ehealth KW - health policy N2 - Background: In response to recent policy efforts to regulate tobacco and vaping products, the vaping industry has been aggressive in mobilizing opposition by using a network of manufacturers, trade associations, and tobacco user communities, and by appealing to the general public. One strategy the alternative tobacco industry uses to mobilize political action is coordinating on social media platforms, such as the social networking site Facebook. However, few studies have specifically assessed how platforms such as Facebook are used to influence public sentiment and attitudes towards tobacco control policy. Objective: This study used social network analysis to examine how the alternative tobacco industry uses Facebook to mobilize online users to influence tobacco control policy outcomes with a focus on the state of California. Methods: Data were collected from local and national alternative tobacco Facebook groups that had affiliations with activities in the state of California. Network ties were constructed based on users? reactions to posts (eg, ?like? and ?love?) and comments to characterize political mobilization networks. Results: Findings show that alternative tobacco industry employees were more likely to engage within these networks and that these employees were also more likely to be influential members (ie, be more active) in the network. Comparisons between subnetworks show that communication within the local alternative tobacco advocacy group network was less dense and more centralized in contrast to a national advocacy group that had overall higher levels of engagement among members. A timeline analysis found that a higher number of influential posts that disseminated widely across networks occurred during e-cigarette?related legislative events, suggesting strategic online engagement and increased mobilization of online activity for the purposes of influencing policy outcomes. Conclusions: Results from this study provide important insights into how tobacco industry?related advocacy groups leverage the Facebook platform to mobilize their online constituents in an effort to influence public perceptions and coordinate to defeat tobacco control efforts at the local, state, and federal level. Study results reveal one part of a vast network of socially enabled alternative tobacco industry actors and constituents that use Facebook as a mobilization point to support goals of the alternative tobacco industry. UR - https://www.jmir.org/2021/10/e28069 UR - http://dx.doi.org/10.2196/28069 UR - http://www.ncbi.nlm.nih.gov/pubmed/34714245 ID - info:doi/10.2196/28069 ER - TY - JOUR AU - Anderson, Elizabeth AU - Koss, Mary AU - Castro Luque, Lucía Ana AU - Garcia, David AU - Lopez, Elise AU - Ernst, Kacey PY - 2021/10/28 TI - WhatsApp-Based Focus Groups Among Mexican-Origin Women in Zika Risk Area: Feasibility, Acceptability, and Data Quality JO - JMIR Form Res SP - e20970 VL - 5 IS - 10 KW - WhatsApp KW - synchronous text-based focus groups KW - Zika KW - Mexican-origin Latinas KW - social media KW - mHealth KW - focus groups KW - smartphones KW - mobile phone N2 - Background: Despite unprecedented advances in worldwide access to the internet via smartphones, barriers to engaging hard-to-reach populations remain in many methods of health research. A potential avenue for conducting qualitative research is via participatory web-based media, including the free, popular social platform WhatsApp. However, despite the clear advantages of engaging with participants over a well-established web-based platform, logistical challenges remain. Objective: This study aims to report evidence on the feasibility and acceptability of WhatsApp as a method to conduct focus groups. Methods: A pilot focus group was conducted with Spanish-speaking women near the US?Mexico border. The content focus was knowledge and perceived risks for exposure to the Zika virus during pregnancy. Results: Evidence was obtained regarding WhatsApp as a low-cost, logistically feasible methodology that resulted in rich qualitative data from a population that is often reticent to engage in traditional research. A total of 5 participants participated in a focus group, of whom all 5 consistently contributed to the focus group chat in WhatsApp, which was conducted over 3 consecutive days. Conclusions: The findings are noteworthy at a time when face-to-face focus groups, the gold standard, are risky or precluded by safe COVID-19 guidelines. Other implications include more applications and evaluations of WhatsApp for delivering one-on-one or group health education interventions on sensitive topics. This paper outlines the key steps and considerations for the replication or adaptation of methods. UR - https://formative.jmir.org/2021/10/e20970 UR - http://dx.doi.org/10.2196/20970 UR - http://www.ncbi.nlm.nih.gov/pubmed/34709185 ID - info:doi/10.2196/20970 ER - TY - JOUR AU - Coughlin, N. Lara AU - Blow, C. Frederic AU - Walton, Maureen AU - Ignacio, V. Rosalinda AU - Walters, Heather AU - Massey, Lynn AU - Barry, L. Kristen AU - McCormick, Richard PY - 2021/10/26 TI - Predictors of Booster Engagement Following a Web-Based Brief Intervention for Alcohol Misuse Among National Guard Members: Secondary Analysis of a Randomized Controlled Trial JO - JMIR Ment Health SP - e29397 VL - 8 IS - 10 KW - alcohol use KW - National Guard KW - brief intervention KW - boosters KW - engagement N2 - Background: Alcohol misuse is a major health concern among military members. Reserve component members face unique barriers as they live off base with limited access to behavioral health services. Web and app-based brief interventions are a promising means to improve access to treatment for those who misuse alcohol, with the use of booster sessions to enhance effectiveness, solidify gains, and reinforce changes. However, little is known about who will engage in booster sessions. Objective: This study aims to evaluate booster engagement across booster delivery modalities (Web and Peer) and identify participant-specific factors associated with booster session engagement. Methods: Following a brief web-based alcohol misuse intervention in National Guard members (N=739), we examined engagement in a series of three booster sessions. Using unadjusted and adjusted models, demographic and clinical characteristics that may serve as predictors of booster session engagement were examined across the 2 arms of the trial with different types of booster sessions: peer-delivered (N=245) and web-delivered (N=246). Results: Booster session completion was greater for Peer than Web Booster sessions, with 142 (58%) service members in the Peer Booster arm completing all three boosters compared with only 108 (44%) of participants in the Web Booster arm (?23=10.3; P=.006). In a model in which the 2 groups were combined, socioeconomic factors predicted booster engagement. In separate models, the demographic and clinical predictors of booster engagement varied between the 2 delivery modalities. Conclusions: The use of peer-delivered boosters, especially among subsets of reserve members at risk of lack of engagement, may foster greater uptake and improve treatment outcomes. Trial Registration: ClinicalTrials.gov NCT02181283; https://clinicaltrials.gov/ct2/show/NCT02181283 UR - https://mental.jmir.org/2021/10/e29397 UR - http://dx.doi.org/10.2196/29397 UR - http://www.ncbi.nlm.nih.gov/pubmed/34698652 ID - info:doi/10.2196/29397 ER - TY - JOUR AU - Struik, Laura AU - Yang, Youjin PY - 2021/10/25 TI - e-Cigarette Cessation: Content Analysis of a Quit Vaping Community on Reddit JO - J Med Internet Res SP - e28303 VL - 23 IS - 10 KW - qualitative research KW - electronic nicotine delivery systems KW - vaping KW - cessation KW - social media N2 - Background: e-Cigarette use, also known as vaping, has increased dramatically over the past few years, especially among younger demographics. However, researchers have found that a large number of e-cigarette users want to quit. Little is known about the unique aspects of vaping cessation, which is critical to informing the development of relevant resources and interventions for e-cigarette users who want to quit. Social media forums such as Reddit provide opportunities to understand the experiences of behavior change such as quitting vaping from the perspective of end users. Objective: This study aims to examine a quit vaping subreddit to understand how e-cigarette users are experiencing and approaching vaping cessation. Specifically, we examine methods used to approach quitting, reasons for quitting, and barriers and facilitators to quitting. Methods: A total of 1228 posts were collected. The posts were inductively coded to generate categories and subcategories using conventional content analysis. Data were analyzed using the NVivo 12 qualitative data analysis software. Results: Most users reported a preference for approaching quitting through gradual reduction, particularly through the use of their own devices by tapering the nicotine content. Their reasons for quitting were primarily related to experiencing negative physical consequences associated with vaping, especially in relation to their lungs (eg, tight chest), and tired of feeling stuck to the vape because of nicotine addiction. Top barriers to quitting were related to withdrawal symptoms and intensity of addiction. The top facilitators to quitting were related to using distraction techniques (eg, hobby, gaming, and mindfulness exercises), as well as having a positive mindset. Conclusions: The findings of this study reveal unique aspects that encompass the process of quitting vaping. These findings have significant implications for both policy and intervention development. UR - https://www.jmir.org/2021/10/e28303 UR - http://dx.doi.org/10.2196/28303 UR - http://www.ncbi.nlm.nih.gov/pubmed/34694229 ID - info:doi/10.2196/28303 ER - TY - JOUR AU - Monselise, Michal AU - Chang, Chia-Hsuan AU - Ferreira, Gustavo AU - Yang, Rita AU - Yang, C. Christopher PY - 2021/10/21 TI - Topics and Sentiments of Public Concerns Regarding COVID-19 Vaccines: Social Media Trend Analysis JO - J Med Internet Res SP - e30765 VL - 23 IS - 10 KW - health care informatics KW - topic detection KW - unsupervised sentiment analysis KW - COVID-19 KW - vaccine hesitancy KW - sentiment KW - concern KW - vaccine KW - social media KW - trend KW - trust KW - health information KW - Twitter KW - discussion KW - communication KW - hesitancy KW - emotion KW - fear N2 - Background: As a number of vaccines for COVID-19 are given emergency use authorization by local health agencies and are being administered in multiple countries, it is crucial to gain public trust in these vaccines to ensure herd immunity through vaccination. One way to gauge public sentiment regarding vaccines for the goal of increasing vaccination rates is by analyzing social media such as Twitter. Objective: The goal of this research was to understand public sentiment toward COVID-19 vaccines by analyzing discussions about the vaccines on social media for a period of 60 days when the vaccines were started in the United States. Using the combination of topic detection and sentiment analysis, we identified different types of concerns regarding vaccines that were expressed by different groups of the public on social media. Methods: To better understand public sentiment, we collected tweets for exactly 60 days starting from December 16, 2020 that contained hashtags or keywords related to COVID-19 vaccines. We detected and analyzed different topics of discussion of these tweets as well as their emotional content. Vaccine topics were identified by nonnegative matrix factorization, and emotional content was identified using the Valence Aware Dictionary and sEntiment Reasoner sentiment analysis library as well as by using sentence bidirectional encoder representations from transformer embeddings and comparing the embedding to different emotions using cosine similarity. Results: After removing all duplicates and retweets, 7,948,886 tweets were collected during the 60-day time period. Topic modeling resulted in 50 topics; of those, we selected 12 topics with the highest volume of tweets for analysis. Administration and access to vaccines were some of the major concerns of the public. Additionally, we classified the tweets in each topic into 1 of the 5 emotions and found fear to be the leading emotion in the tweets, followed by joy. Conclusions: This research focused not only on negative emotions that may have led to vaccine hesitancy but also on positive emotions toward the vaccine. By identifying both positive and negative emotions, we were able to identify the public's response to the vaccines overall and to news events related to the vaccines. These results are useful for developing plans for disseminating authoritative health information and for better communication to build understanding and trust. UR - https://www.jmir.org/2021/10/e30765 UR - http://dx.doi.org/10.2196/30765 UR - http://www.ncbi.nlm.nih.gov/pubmed/34581682 ID - info:doi/10.2196/30765 ER - TY - JOUR AU - Lavertu, Adam AU - Hamamsy, Tymor AU - Altman, B. Russ PY - 2021/10/21 TI - Quantifying the Severity of Adverse Drug Reactions Using Social Media: Network Analysis JO - J Med Internet Res SP - e27714 VL - 23 IS - 10 KW - social media for health KW - pharmacovigilance KW - adverse drug reactions KW - machine learning KW - network analysis KW - word embeddings KW - drug safety KW - social media N2 - Background: Adverse drug reactions (ADRs) affect the health of hundreds of thousands of individuals annually in the United States, with associated costs of hundreds of billions of dollars. The monitoring and analysis of the severity of ADRs is limited by the current qualitative and categorical systems of severity classification. Previous efforts have generated quantitative estimates for a subset of ADRs but were limited in scope because of the time and costs associated with the efforts. Objective: The aim of this study is to increase the number of ADRs for which there are quantitative severity estimates while improving the quality of these severity estimates. Methods: We present a semisupervised approach that estimates ADR severity by using social media word embeddings to construct a lexical network of ADRs and perform label propagation. We used this method to estimate the severity of 28,113 ADRs, representing 12,198 unique ADR concepts from the Medical Dictionary for Regulatory Activities. Results: Our Severity of Adverse Events Derived from Reddit (SAEDR) scores have good correlations with real-world outcomes. The SAEDR scores had Spearman correlations of 0.595, 0.633, and ?0.748 for death, serious outcome, and no outcome, respectively, with ADR case outcomes in the Food and Drug Administration Adverse Event Reporting System. We investigated different methods for defining initial seed term sets and evaluated their impact on the severity estimates. We analyzed severity distributions for ADRs based on their appearance in boxed warning drug label sections, as well as for ADRs with sex-specific associations. We found that ADRs discovered in the postmarketing period had significantly greater severity than those discovered during the clinical trial (P<.001). We created quantitative drug-risk profile (DRIP) scores for 968 drugs that had a Spearman correlation of 0.377 with drugs ranked by the Food and Drug Administration Adverse Event Reporting System cases resulting in death, where the given drug was the primary suspect. Conclusions: Our SAEDR and DRIP scores are well correlated with the real-world outcomes of the entities they represent and have demonstrated utility in pharmacovigilance research. We make the SAEDR scores for 12,198 ADRs and the DRIP scores for 968 drugs publicly available to enable more quantitative analysis of pharmacovigilance data. UR - https://www.jmir.org/2021/10/e27714 UR - http://dx.doi.org/10.2196/27714 UR - http://www.ncbi.nlm.nih.gov/pubmed/34673524 ID - info:doi/10.2196/27714 ER - TY - JOUR AU - Malik, S. Faisal AU - Lind, Cara AU - Duncan, Sarah AU - Mitrovich, Connor AU - Pascual, Michael AU - Yi-Frazier, P. Joyce PY - 2021/10/21 TI - Augmenting Traditional Support Groups for Adolescents With Type 1 Diabetes Using Instagram: Mixed Methods Feasibility Study JO - JMIR Diabetes SP - e21405 VL - 6 IS - 4 KW - diabetes mellitus, type 1 KW - self-help groups KW - social media KW - adolescent N2 - Background: In-person support groups have been shown to benefit adolescents with type 1 diabetes (T1D) by helping to decrease perceived diabetes burden and improving knowledge related to chronic disease management. However, barriers exist to participation in traditional support groups, including the timing and location of meetings and resources needed to attend. Adolescents are increasingly utilizing online support groups, which may provide solutions to some of the challenges faced when implementing in-person support groups. Objective: The purpose of this study was to assess the feasibility and acceptability of a hybrid support group model where traditional in-person support groups were augmented with Instagram participation between monthly support group sessions for adolescents with T1D. Methods: Participants (13-18 years old with T1D for ?6 months) were asked to post photos each week for 3 months based on predetermined topics related to diabetes management. At the end of each month, participants attended an in-person support group to discuss their photos using the Photovoice method. Feasibility was assessed through enrollment and retention, number of Instagram posts, poststudy questionnaire, and a template analysis of the focus groups. Results: Of 24 eligible participants, 16 (67%) enrolled in the study, with 3 dropping out prior to support group participation. The number of photos posted over 3 months ranged from 14 to 41. Among the 11 participants who completed a follow-up questionnaire, the majority of participants (6/11, 55%) reported that they very much enjoyed participating in the hybrid support group, and more than three-quarters (9/11, 82%) of participants reported that they ?related to the photos posted.? Over half of participants (8/11, 73%) reported ?learning something new from the photos posted,? which arose from sharing knowledge and experiences related to navigating the common challenges of diabetes management. Additionally, the use of Instagram posts helped facilitate peer discussions during the in-person support groups. Conclusions: The novel combination of using Instagram to augment traditional in-person support groups was feasible and acceptable to adolescents with T1D. The overall satisfaction with the hybrid support group model, combined with the observed engagement with peers between support group sessions over social media, suggests that a hybrid support group model may have the potential to provide more pronounced benefits to adolescents than in-person meetings alone. Future research should investigate the use of social media as part of the support group model and examine the potential improvement of self-esteem, benefit-finding, and social support using validated tools in adolescents with diabetes. UR - https://diabetes.jmir.org/2021/4/e21405 UR - http://dx.doi.org/10.2196/21405 UR - http://www.ncbi.nlm.nih.gov/pubmed/34673527 ID - info:doi/10.2196/21405 ER - TY - JOUR AU - Lustig, Andrew AU - Brookes, Gavin AU - Hunt, Daniel PY - 2021/10/21 TI - Social Semiotics of Gangstalking Evidence Videos on YouTube: Multimodal Discourse Analysis of a Novel Persecutory Belief System JO - JMIR Ment Health SP - e30311 VL - 8 IS - 10 KW - internet KW - discourse analysis KW - psychosis KW - delusion KW - semiotics KW - linguistics KW - computer-mediated communication KW - schizophrenia KW - eHealth KW - video KW - communication KW - YouTube KW - social media KW - discourse KW - mental health N2 - Background: Gangstalking refers to a novel persecutory belief system wherein sufferers believe that they are being followed, watched, and harassed by a vast network of people in their community who have been recruited as complicit perpetrators. They are frequently diagnosed as mentally ill, although they reject this formulation. Those affected by this belief system self-identify as targeted individuals (TIs). They seek to prove the veracity of their persecution and dispute the notion that they are mentally ill by posting videos online that purport to provide evidence of their claims. Objective: The objective of the study was to characterize the multimodal social semiotic practices used in gangstalking evidence videos. Methods: We assembled a group of 50 evidence videos posted on YouTube by self-identified TIs and performed a multimodal social semiotic discourse analysis using a grounded theory approach to data analysis. Results: TIs accomplished several social and interpersonal tasks in the videos. They constructed their own identity as subjects of persecution and refuted the notion that they suffered from mental illness. They also cultivated positive ambient affiliation with viewers of the videos but manifested hostility toward people who appeared in the videos. They made extensive use of multimodal deixis to generate salience and construe the gangstalking belief system. The act of filming itself was a source of conflict and served as a self-fulfilling prophecy; filming was undertaken to neutrally record hostility directed toward video bloggers (vloggers). However, the act of filming precipitated the very behaviors that they set out to document. Finally, the act of filming was also regarded as an act of resistance and empowerment by vloggers. Conclusions: These data provide insight into a novel persecutory belief system. Interpersonal concerns are important for people affected, and they construe others as either sympathetic or hostile. They create positive ambient affiliation with viewers. We found that vloggers use multimodal deixis to illustrate the salience of the belief system. The videos highlighted the Derridean concept of différance, wherein the meaning of polysemous signifiers is deferred without definitive resolution. This may be important in communicating with people and patients with persecutory belief systems. Clinicians may consider stepping away from the traditional true/false dichotomy endorsed by psychiatric classification systems and focus on the ambiguity in semiotic systems generally and in persecutory belief systems specifically. UR - https://mental.jmir.org/2021/10/e30311 UR - http://dx.doi.org/10.2196/30311 UR - http://www.ncbi.nlm.nih.gov/pubmed/34673523 ID - info:doi/10.2196/30311 ER - TY - JOUR AU - Bedford-Petersen, Cianna AU - Weston, J. Sara PY - 2021/10/15 TI - Mapping Individual Differences on the Internet: Case Study of the Type 1 Diabetes Community JO - JMIR Diabetes SP - e30756 VL - 6 IS - 4 KW - type 1 diabetes KW - diabetes community KW - social media KW - Twitter KW - natural language processing KW - social network analysis KW - Latent Dirichlet Allocation KW - diabetes KW - data scraping KW - sentiment analysis N2 - Background: Social media platforms, such as Twitter, are increasingly popular among communities of people with chronic conditions, including those with type 1 diabetes (T1D). There is some evidence that social media confers emotional and health-related benefits to people with T1D, including emotional support and practical information regarding health maintenance. Research on social media has primarily relied on self-reports of web-based behavior and qualitative assessment of web-based content, which can be expensive and time-consuming. Meanwhile, recent advances in natural language processing have allowed for large-scale assessment of social media behavior. Objective: This study attempts to document the major themes of Twitter posts using a natural language processing method to identify topics of interest in the T1D web-based community. We also seek to map social relations on Twitter as they relate to these topics of interest, to determine whether Twitter users in the T1D community post in ?echo chambers,? which reflect their own topics back to them, or whether users typically see a mix of topics on the internet. Methods: Through Twitter scraping, we gathered a data set of 691,691 tweets from 8557 accounts, spanning a date range from 2008 to 2020, which includes people with T1D, their caregivers, health practitioners, and advocates. Tweet content was analyzed for sentiment and topic, using Latent Dirichlet Allocation. We used social network analysis to examine the degree to which identified topics are siloed within specific groups or disseminated through the broader T1D web-based community. Results: Tweets were, on average, positive in sentiment. Through topic modeling, we identified 6 broad-bandwidth topics, ranging from clinical to advocacy to daily management to emotional health, which can inform researchers and practitioners interested in the needs of people with T1D. These analyses also replicate prior work using machine learning methods to map social behavior on the internet. We extend these results through social network analysis, indicating that users are likely to see a mix of these topics discussed by the accounts they follow. Conclusions: Twitter communities are sources of information for people with T1D and members related to that community. Topics identified reveal key concerns of the T1D community and may be useful to practitioners and researchers alike. The methods used are efficient (low cost) while providing researchers with enormous amounts of data. We provide code to facilitate the use of these methods with other populations. UR - https://diabetes.jmir.org/2021/4/e30756 UR - http://dx.doi.org/10.2196/30756 UR - http://www.ncbi.nlm.nih.gov/pubmed/34652277 ID - info:doi/10.2196/30756 ER - TY - JOUR AU - Clavier, Thomas AU - Occhiali, Emilie AU - Demailly, Zoé AU - Compère, Vincent AU - Veber, Benoit AU - Selim, Jean AU - Besnier, Emmanuel PY - 2021/10/15 TI - The Association Between Professional Accounts on Social Networks Twitter and ResearchGate and the Number of Scientific Publications and Citations Among Anesthesia Researchers: Observational Study JO - J Med Internet Res SP - e29809 VL - 23 IS - 10 KW - social network KW - anesthesia KW - publication KW - Twitter KW - ResearchGate KW - citation KW - social media KW - academic KW - researcher KW - bibliometrics KW - research output N2 - Background: Social networks are now essential tools for promoting research and researchers. However, there is no study investigating the link between presence or not on professional social networks and scientific publication or citation for a given researcher. Objective: The objective of this study was to study the link between professional presence on social networks and scientific publications/citations among anesthesia researchers. Methods: We included all the French full professors and associate professors of anesthesia. We analyzed their presence on the social networks Twitter (professional account with ?1 tweet over the 6 previous months) and ResearchGate. We extracted their bibliometric parameters for the 2016-2020 period via the Web of Science Core Collection (Clarivate Analytics) database in the Science Citation Index-Expanded index. Results: A total of 162 researchers were analyzed; 42 (25.9%) had an active Twitter account and 110 (67.9%) a ResearchGate account. There was no difference between associate professors and full professors regarding active presence on Twitter (8/23 [35%] vs. 34/139 [24.5%], respectively; P=.31) or ResearchGate (15/23 [65%] vs. 95/139 [68.3%], respectively; P=.81). Researchers with an active Twitter account (median [IQR]) had more scientific publications (45 [28-61] vs. 26 [12-41]; P<.001), a higher h-index (12 [8-16] vs. 8 [5-11]; P<.001), a higher number of citations per publication (12.54 [9.65-21.8] vs. 10.63 [5.67-16.10]; P=.01), and a higher number of citations (563 [321-896] vs. 263 [105-484]; P<.001). Researchers with a ResearchGate account (median [IQR]) had more scientific publications (33 [17-47] vs. 26 [9-43]; P=.03) and a higher h-index (9 [6-13] vs. 8 [3-11]; P=.03). There was no difference between researchers with a ResearchGate account and those without it concerning the number of citations per publication and overall number of citations. In multivariate analysis including sex, academic status, and presence on social networks, the presence on Twitter was associated with the number of publications (?=20.2; P<.001), the number of citations (?=494.5; P<.001), and the h-index (?=4.5; P<.001). Conclusions: Among French anesthesia researchers, an active presence on Twitter is associated with higher scientific publication and citations. UR - https://www.jmir.org/2021/10/e29809 UR - http://dx.doi.org/10.2196/29809 UR - http://www.ncbi.nlm.nih.gov/pubmed/34652279 ID - info:doi/10.2196/29809 ER - TY - JOUR AU - Hendrikx, Josephine Laura AU - Murphy, Dominic PY - 2021/10/12 TI - Supporting the Mental Health Needs of Military Partners Through the Together Webinar Program: Pilot Randomized Controlled Trial JO - JMIR Ment Health SP - e25622 VL - 8 IS - 10 KW - mental health support KW - online group-based support KW - military partners N2 - Background: Despite an increased risk of psychological difficulties, there remains a lack of evidence-based support for the mental health needs of military partners. Objective: This study aims to investigate whether the Together Webinar Programme (TTP-Webinar), a 6-week structured, remote access group intervention would reduce military partners? experience of common mental health difficulties and secondary trauma symptoms. Methods: A pilot randomized controlled trial was used to compare the TTP-Webinar intervention with a waitlist control. The sample was UK treatment-seeking veterans engaged in a mental health charity. A total of 196 military partners (1 male and 195 females; aged mean 42.28, SD 10.82 years) were randomly allocated to the intervention (n=97) or waitlist (n=99) condition. Outcome measures were self-reported measures of common mental health difficulties, secondary trauma symptoms, and overall quality of life rating. Results: Compared with the waitlist, military partners in the TTP-Webinar had reduced common mental health difficulties (P=.02) and secondary trauma symptoms (P=.001). However, there was no difference in quality-of-life ratings (P=.06). Conclusions: The results suggest that TTP-Webinar is an effective intervention to support the mental health difficulties of military partners. This study provides promising evidence that webinars may be an appropriate platform for providing group-based support. Trial Registration: ClinicalTrials.gov NCT05013398; https://clinicaltrials.gov/ct2/show/NCT05013398 UR - https://mental.jmir.org/2021/10/e25622 UR - http://dx.doi.org/10.2196/25622 UR - http://www.ncbi.nlm.nih.gov/pubmed/34636734 ID - info:doi/10.2196/25622 ER - TY - JOUR AU - Flood-Grady, Elizabeth AU - Solberg, B. Lauren AU - Baralt, Claire AU - Meyer, Meghan AU - Stevens, Jeff AU - Krieger, L. Janice PY - 2021/10/8 TI - Engaging Institutional Stakeholders to Develop and Implement Guidelines for Recruiting Participants in Research Studies Using Social Media: Mixed Methods, Multi-Phase Process JO - J Med Internet Res SP - e23312 VL - 23 IS - 10 KW - social media KW - research recruitment KW - stakeholder engagement KW - health communication N2 - Background: Limited regulatory guidance surrounding the use of social media channels for participant recruitment is an interdisciplinary challenge. Establishing stakeholder-informed procedures is essential for ethical and effective use of social media for participant recruitment. Objective: This study aims to provide replicable procedures for developing and implementing guidelines for using social media to recruit participants in research studies. Methods: Social media use cases at the university were used to identify institutional stakeholders for the initiative. After establishing workflow procedures, a scoping review of web-based materials about recruitment and research on the internet and social media from 19 peer institutions and 2 federal agencies was conducted to inform the structure of the policies and procedures. End users (investigators and study coordinators; N=14) also provided feedback on the policies and procedures and implementation. Results: Representatives (n=7) from 5 institutional offices and 15 subject-matter experts from 5 areas were identified as stakeholders in the development of policies and procedures. Peers with web-based materials (n=16) identified in the scoping review revealed 4 themes that served as a basis for developing our policies and procedures. End user feedback further informed the policies and procedures and implementation. A centrally managed social media account for communicating with participants and hosting advertising campaigns on social media was also established and, when combined with the policies and procedures, resulted in 39 advertising campaigns, and 2846 participants were enrolled in health and clinical research studies. Conclusions: Our policies and procedures allow research teams to harness the potential of social media to increase study recruitment and participation; the transparent, stakeholder-informed process can be replicated by institutional administrators to establish policies and procedures that meet the interests and needs of their research community. UR - https://www.jmir.org/2021/10/e23312 UR - http://dx.doi.org/10.2196/23312 UR - http://www.ncbi.nlm.nih.gov/pubmed/34623319 ID - info:doi/10.2196/23312 ER - TY - JOUR AU - Thakur, Anupam AU - Pereira, Cheryl AU - Hardy, Jenny AU - Bobbette, Nicole AU - Sockalingam, Sanjeev AU - Lunsky, Yona PY - 2021/10/7 TI - Virtual Education Program to Support Providers Caring for People With Intellectual and Developmental Disabilities During the COVID-19 Pandemic: Rapid Development and Evaluation Study JO - JMIR Ment Health SP - e28933 VL - 8 IS - 10 KW - COVID-19 KW - coronavirus KW - pandemic KW - intellectual disability KW - mental health KW - community of practice KW - ECHO, virtual KW - capacity-building N2 - Background: People with intellectual and developmental disabilities are at increased health-related risk due to the COVID-19 pandemic. Virtual training programs that support providers in caring for the physical and mental health needs of this population, as well provide psychological support to the providers themselves, are needed during the pandemic. Objective: This paper describes the design, delivery, and evaluation of a virtual educational COVID-19?focused Extension for Community Healthcare Outcomes program to support providers during the COVID-19 pandemic in caring for the mental health of people with intellectual and developmental disabilities. Methods: A rapid design thinking approach was used to develop a 6-session program that incorporates mindfulness practice, a wellness check, COVID-19?related research and policy updates, a didactic presentation on a combination mental health and COVID-19 related topic, and a case-based discussion to encourage practical learning. We used the first 5 outcome levels of Moore?s evaluation framework?focusing on participation, satisfaction, learning, self-efficacy, and change in practice?which were rated (out of 5) by care providers from health and disability service sectors, as well as additional reflection measures about innovations to the program. Qualitative feedback from open-text responses from participants were analyzed using modified manifest content analysis. Results: A total of 104 care providers from health and disability service sectors participated in the program. High levels of engagement (81 participants per session on average) and satisfaction (overall satisfaction score: mean 4.31, SD 0.17) were observed. Self-efficacy (score improvement: 19.8%), support, and coping improved. Participants also rated the newly developed COVID-19 program and its innovative components highly. Open text feedback showed participants felt that the Extension for Community Healthcare Outcomes program expanded their knowledge and competency and created a sense of being part of a community of practice; provided value for the COVID-19 innovations; supported resource-sharing within and beyond program participants; and facilitated changes to participants? approaches to client care in practice and increased participants? confidence in supporting clients and families. Conclusions: The Extension for Community Healthcare Outcomes program is an effective model for capacity-building programs with a shared-learning approach. Future iterations should include targeted evaluation of long-term outcomes such as staff burnout. UR - https://mental.jmir.org/2021/10/e28933 UR - http://dx.doi.org/10.2196/28933 UR - http://www.ncbi.nlm.nih.gov/pubmed/34617917 ID - info:doi/10.2196/28933 ER - TY - JOUR AU - Feldhege, Johannes AU - Moessner, Markus AU - Bauer, Stephanie PY - 2021/10/6 TI - Detrimental Effects of Online Pro?Eating Disorder Communities on Weight Loss and Desired Weight: Longitudinal Observational Study JO - J Med Internet Res SP - e27153 VL - 23 IS - 10 KW - pro-eating disorder communities KW - weight loss KW - body weight KW - social media KW - linear growth models KW - eating disorders KW - pro-ED KW - Reddit N2 - Background: Online pro?eating disorder (pro-ED) communities are considered harmful because of their detrimental effects on their users? body dissatisfaction, dieting, and help seeking. To date, it is unknown to which extent participation in pro-ED communities affects users? body weight and desired weight loss. Objective: This study aims to investigate the changes in the current and desired body weight of users of a pro-ED community (r/proed) on the social media website Reddit over time. Methods: Data on 1170 users and the unsolicited weight information they shared with the pro-ED community were collected over a period of 15 months. Linear growth models were used to model changes in the users? current and desired BMI over time. Results: Both current and desired BMI decreased over time, with a predicted rate of 0.087 and 0.015 BMI points per week, respectively. Weight loss was moderated by the users? activity level in the community, with more active users losing more weight. Users with a higher baseline BMI experienced greater weight loss, but even users with a very low baseline weight (BMI <17 kg/m2) lost weight during their participation. In addition, users decreased their desired weight over time, with many pursuing extremely low, unrealistic weight goals. Changes in the desired weight were moderated by the baseline current BMI and baseline desired BMI. Users with higher desired weight and lower body weight at baseline decreased their desired weight more over time. Conclusions: This is the first study to demonstrate the detrimental effects of pro-ED communities in a longitudinal study based on a large data set of user-generated online data. The results extend the literature detailing the harmful effects of online pro-ED communities by showing users? weight loss, decreases in desired weight, and that higher activity levels lead to greater weight loss. Users could be driven to pursue very low, unrealistic weight loss goals by images of very thin bodies presented in these communities. UR - https://www.jmir.org/2021/10/e27153 UR - http://dx.doi.org/10.2196/27153 UR - http://www.ncbi.nlm.nih.gov/pubmed/34612830 ID - info:doi/10.2196/27153 ER - TY - JOUR AU - Kelly, J. Peter AU - Beck, K. Alison AU - Deane, P. Frank AU - Larance, Briony AU - Baker, L. Amanda AU - Hides, Leanne AU - Manning, Victoria AU - Shakeshaft, Anthony AU - Neale, Joanne AU - Kelly, F. John AU - Oldmeadow, Christopher AU - Searles, Andrew AU - Palazzi, Kerrin AU - Lawson, Kenny AU - Treloar, Carla AU - Gray, M. Rebecca AU - Argent, Angela AU - McGlaughlin, Ryan PY - 2021/10/6 TI - Feasibility of a Mobile Health App for Routine Outcome Monitoring and Feedback in SMART Recovery Mutual Support Groups: Stage 1 Mixed Methods Pilot Study JO - J Med Internet Res SP - e25217 VL - 23 IS - 10 KW - mHealth KW - SMART Recovery KW - mutual support group KW - mutual aid KW - routine outcome monitoring KW - treatment progress feedback KW - addiction KW - mobile phone N2 - Background: Mutual support groups are an important source of long-term help for people impacted by addictive behaviors. Routine outcome monitoring (ROM) and feedback are yet to be implemented in these settings. SMART Recovery mutual support groups focus on self-empowerment and use evidence-based techniques (eg, motivational and behavioral strategies). Trained facilitators lead all SMART Recovery groups, providing an opportunity to implement ROM. Objective: The aim of this stage 1 pilot study is to explore the feasibility, acceptability, and preliminary outcomes of a novel, purpose-built mobile health ROM and feedback app (SMART Track) in mutual support groups coordinated by SMART Recovery Australia (SRAU) over 8 weeks. Methods: SMART Track was developed during phase 1 of this study using participatory design methods and an iterative development process. During phase 2, 72 SRAU group participants were recruited to a nonrandomized, prospective, single-arm trial of the SMART Track app. Four modes of data collection were used: ROM data directly entered by participants into the app; app data analytics captured by Amplitude Analytics (number of visits, number of unique users, visit duration, time of visit, and user retention); baseline, 2-, and 8-week follow-up assessments conducted through telephone; and qualitative telephone interviews with a convenience sample of study participants (20/72, 28%) and facilitators (n=8). Results: Of the 72 study participants, 68 (94%) created a SMART Track account, 64 (88%) used SMART Track at least once, and 42 (58%) used the app for more than 5 weeks. During week 1, 83% (60/72) of participants entered ROM data for one or more outcomes, decreasing to 31% (22/72) by the end of 8 weeks. The two main screens designed to provide personal feedback data (Urges screen and Overall Progress screen) were the most frequently visited sections of the app. Qualitative feedback from participants and facilitators supported the acceptability of SMART Track and the need for improved integration into the SRAU groups. Participants reported significant reductions between the baseline and 8- week scores on the Severity of Dependence Scale (mean difference 1.93, SD 3.02; 95% CI 1.12-2.73) and the Kessler Psychological Distress Scale-10 (mean difference 3.96, SD 8.31; 95% CI 1.75-6.17), but no change on the Substance Use Recovery Evaluator (mean difference 0.11, SD 7.97; 95% CI ?2.02 to 2.24) was reported. Conclusions: Findings support the feasibility, acceptability, and utility of SMART Track. Given that sustained engagement with mobile health apps is notoriously difficult to achieve, our findings are promising. SMART Track offers a potential solution for ROM and personal feedback, particularly for people with substance use disorders who attend mutual support groups. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12619000686101; https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377336 International Registered Report Identifier (IRRID): RR2-10.2196/15113 UR - https://www.jmir.org/2021/10/e25217 UR - http://dx.doi.org/10.2196/25217 UR - http://www.ncbi.nlm.nih.gov/pubmed/34612829 ID - info:doi/10.2196/25217 ER - TY - JOUR AU - Kim, Taewan AU - Hong, Hwajung PY - 2021/10/5 TI - Understanding University Students? Experiences, Perceptions, and Attitudes Toward Peers Displaying Mental Health?Related Problems on Social Networking Sites: Online Survey and Interview Study JO - JMIR Ment Health SP - e23465 VL - 8 IS - 10 KW - mental health KW - social media KW - social support KW - peers KW - peer support KW - self-disclosure N2 - Background: College students? mental health is at an all-time low. Students are increasingly disclosing their vulnerable, stigmatizing experiences on online social networking sites (SNSs). Peer support facilitated by SNSs can play a crucial role for the students in coping with mental health?related problems. Thus, it is imperative to understand how university students form perceptions, attitudes, and behaviors toward their peers who are dealing with mental health problems. Objective: This study aimed to provide a better understanding of how college students recognize, perceive, and react to signs of mental health problems in their peers on SNSs. Our ultimate goal in this study was to inform the design of SNSs that can facilitate online peer support. Methods: We conducted surveys with 226 students as well as semistructured interviews with 20 students at six universities in South Korea. Results: Of the 226 survey respondents, 150 (66.4%) reported that they recognized signs of a mental health problem on their friends? SNS posts. However, a considerable number of respondents (62/150, 41.3%) were reluctant to offer support, even when they had identified friends who were at risk; this reluctance was due to a lack of knowledge or confidence and their desire to maintain a distance from at-risk peers to save their identity from stigmatization and to avoid emotional contagion online. Conclusions: Drawing on these results, we provide implications that could explain the construction of students? perceptions regarding their peers? mental health problems. We also provide design proposals for SNSs to serve as platforms that facilitate just-in-time and adaptive support exchanges among peers while mitigating stigma-related concerns. UR - https://mental.jmir.org/2021/10/e23465 UR - http://dx.doi.org/10.2196/23465 UR - http://www.ncbi.nlm.nih.gov/pubmed/34609315 ID - info:doi/10.2196/23465 ER - TY - JOUR AU - Mayoh, Joanne AU - Jones, Ian PY - 2021/10/4 TI - Young People?s Experiences of Engaging With Fitspiration on Instagram: Gendered Perspective JO - J Med Internet Res SP - e17811 VL - 23 IS - 10 KW - social media KW - gender KW - physical fitness KW - women?s health KW - men?s health KW - body ideals N2 - Background: Fitness inspiration or fitspiration is a term used to describe web-based images of fit people, people in the gym, health foods, or inspirational quotes relating to diet and fitness being shared and consumed via visual social media. The popularity of this content is most notable via the Instagram platform. Currently, the majority of fitspiration research has focused on women?s experiences; however, increasingly, studies have pointed to the need to explore the gendered ways by which people engage with this content. Objective: The aim of this study is to explore how young men and women engage in fitspiration content on Instagram and provide a gendered analysis of how and why they consume this content. Methods: This study used a cross-sectional web-based survey (N=1213) of UK-based fitspiration users aged 18-24 years consisting of closed-ended questions to capture quantitative data. Results: The majority actively using Instagram for fitspiration (therefore eligible participants) were women (826/1175, 70.30%). Men were more likely to view content posted by athletes (?21, N=1153=71.8; P=.001) and bodybuilders (?21, N=1153=32.8; P<.001), whereas women were more likely to view content related to weight loss (?21, N=1153=36.8; P<.001), diet plans (?21, N=1153=11.9; P<.001), and celebrities? content (?21, N=1153=33.5; P<.001). Men were more likely to use fitspiration as a source of inspiration to exercise to gain muscle or get stronger (?21, N=1147=17.9; P<.001), whereas women were more likely to use fitspiration as inspiration for healthy eating (?21, N=1147=37.7; P<.001), or to exercise to diet or lose weight (?21, N=1147=13.5; P<.001). Women were more likely to engage in passive behaviors such as viewing content on their feed (?21, N=1139=7.9; P=.005) or scrolling through accounts (?21, N=1139=15.2; P<.001), whereas men were more likely to engage in active consumption by tagging fitspiration accounts in posts (?21, N=1139=7.2; P=.007), commenting on posts (?21, N=1139=8.1; P=.004), and posting fitspiration content (?21, N=1139=6.4; P=.01). Conclusions: Female fitspiration consumers engaged with content that reinforced the feminine thin but shapely ideal, whereas male users sought out content that reinforced the masculine muscular ideal. Male users were more likely to engage actively with content (eg, posting fitspiration content), while female users were more likely to engage passively (eg, scrolling through accounts, posts, or images). Future research should consider how fitspiration consumption reflects and reproduces oppressive gender ideology. UR - https://www.jmir.org/2021/10/e17811 UR - http://dx.doi.org/10.2196/17811 UR - http://www.ncbi.nlm.nih.gov/pubmed/34605768 ID - info:doi/10.2196/17811 ER - TY - JOUR AU - Sharp, J. Kendall AU - Vitagliano, A. Julia AU - Weitzman, R. Elissa AU - Fitzgerald, Susan AU - Dahlberg, E. Suzanne AU - Austin, Bryn S. PY - 2021/10/4 TI - Peer-to-Peer Social Media Communication About Dietary Supplements Used for Weight Loss and Sports Performance Among Military Personnel: Pilot Content Analysis of 11 Years of Posts on Reddit JO - JMIR Form Res SP - e28957 VL - 5 IS - 10 KW - dietary supplements KW - social media KW - Reddit KW - OPSS N2 - Background: Over 60% of military personnel in the United States currently use dietary supplements. Two types of dietary supplements, weight loss and sports performance (WLSP) supplements, are commonly used by military personnel despite the associated serious adverse effects such as dehydration and stroke. Objective: To understand peer-to-peer communication about WLSP supplements among military personnel, we conducted a pilot study using the social media website, Reddit. Methods: A total of 64 relevant posts and 243 comments from 2009 to 2019 were collected from 6 military subreddits. The posts were coded for year of posting, subreddit, and content consistent with the following themes: resources about supplement safety and regulation, discernability of supplement use through drug testing, serious adverse effects, brand names or identifiers, and reasons for supplement use. Results: A primary concern posted by personnel who used supplements was uncertainty about the supplements that were not detectable on a drug test. Supplements to improve workout performance were the most frequently used. Conclusions: Our pilot study suggests that military personnel may seek out peer advice about WLSP supplements on Reddit and spread misinformation about the safety and effectiveness of these products through this platform. Future directions for the monitoring of WLSP supplement use in military personnel are discussed. UR - https://formative.jmir.org/2021/10/e28957 UR - http://dx.doi.org/10.2196/28957 UR - http://www.ncbi.nlm.nih.gov/pubmed/34605769 ID - info:doi/10.2196/28957 ER - TY - JOUR AU - Dysthe, K. Kim AU - Haavet, R. Ole AU - Røssberg, I. Jan AU - Brandtzaeg, B. Petter AU - Følstad, Asbjørn AU - Klovning, Atle PY - 2021/9/30 TI - Finding Relevant Psychoeducation Content for Adolescents Experiencing Symptoms of Depression: Content Analysis of User-Generated Online Texts JO - J Med Internet Res SP - e28765 VL - 23 IS - 9 KW - adolescent KW - depression KW - internet KW - education KW - preventive psychiatry KW - early medical intervention KW - self-report KW - psychoeducation KW - information content KW - online KW - digital health KW - e-health N2 - Background: Symptoms of depression are frequent in youth and may develop into more severe mood disorders, suggesting interventions should take place during adolescence. However, young people tend not to share mental problems with friends, family, caregivers, or professionals. Many receive misleading information when searching the internet. Among several attempts to create mental health services for adolescents, technological information platforms based on psychoeducation show promising results. Such development rests on established theories and therapeutic models. To fulfill the therapeutic potential of psychoeducation in health technologies, we lack data-driven research on young peoples? demand for information about depression. Objective: Our objective is to gain knowledge about what information is relevant to adolescents with symptoms of depression. From this knowledge, we can develop a population-specific psychoeducation for use in different technology platforms. Methods: We conducted a qualitative, constructivist-oriented content analysis of questions submitted by adolescents aged 16-20 years to an online public information service. A sample of 100 posts containing questions on depression were randomly selected from a total of 870. For analysis, we developed an a priori codebook from the main information topics of existing psychoeducational programs on youth depression. The distribution of topic prevalence in the total volume of posts containing questions on depression was calculated. Results: With a 95% confidence level and a ±9.2% margin of error, the distribution analysis revealed the following categories to be the most prevalent among adolescents seeking advice about depression: self-management (33%, 61/180), etiology (20%, 36/180), and therapy (20%, 36/180). Self-management concerned subcategories on coping in general and how to open to friends, family, and caregivers. The therapy topic concerned therapy options, prognosis, where to seek help, and how to open up to a professional. We also found young people dichotomizing therapy and self-management as opposite entities. The etiology topic concerned stressors and risk factors. The diagnosis category was less frequently referred to (9%, 17/180). Conclusions: Self-management, etiology, and therapy are the most prevalent categories among adolescents seeking advice about depression. Young people also dichotomize therapy and self-management as opposite entities. Future research should focus on measures to promote self-management, measures to stimulate expectations of self-efficacy, information about etiology, and information about diagnosis to improve self-monitoring skills, enhancing relapse prevention. UR - https://www.jmir.org/2021/9/e28765 UR - http://dx.doi.org/10.2196/28765 UR - http://www.ncbi.nlm.nih.gov/pubmed/34591021 ID - info:doi/10.2196/28765 ER - TY - JOUR AU - Spitzer, A. Kerry AU - Heineman, Brent AU - Jewell, Marcella AU - Moran, Michael AU - Lindenauer, K. Peter PY - 2021/9/30 TI - Evaluation of the Acceptability of a Proposed, Instagram-Based, Randomized Controlled Trial for People With Asthma: Survey Study JO - JMIR Form Res SP - e24005 VL - 5 IS - 9 KW - asthma KW - social media KW - Instagram KW - social support KW - digital storytelling KW - young adult N2 - Background: Asthma is a chronic lung disease that affects nearly 25 million individuals in the United States. More research is needed into the potential for health care providers to leverage existing social media platforms to improve healthy behaviors and support individuals living with chronic health conditions. Objective: In this study, we assessed the willingness of Instagram users with poorly controlled asthma to participate in a pilot randomized controlled trial that will use Instagram as a means of providing social and informational support. In addition, we explored the potential for adapting the principles of photovoice and digital storytelling to Instagram. Methods: We conducted a survey study of Instagram users aged 18-40 years with poorly controlled asthma in the United States. Results: Over 3 weeks of recruitment, 457 individuals completed the presurvey screener; 347 (75.9%) were excluded and 110 (24.1%) were eligible and agreed to participate in the study. Of the 110 individuals, 82 (74.5%) completed the study survey. The mean age of the respondents was 21 (SD 5.3) years. Among respondents, 56% (46/82) were female, 65% (53/82) were non-Hispanic White, and 72% (59/82) had at least some college education. The majority of respondents (67/82, 82%) indicated that they would be willing to participate in the proposed study. Conclusions: Among young adult Instagram users with asthma, there is substantial interest in participating in a pilot randomized controlled trial that will use Instagram to connect participants with peers and a health coach to share information about self-management of asthma and build social connection. UR - https://formative.jmir.org/2021/9/e24005 UR - http://dx.doi.org/10.2196/24005 UR - http://www.ncbi.nlm.nih.gov/pubmed/34591019 ID - info:doi/10.2196/24005 ER - TY - JOUR AU - Mote, Jasmine AU - Gill, Kathryn AU - Fulford, Daniel PY - 2021/9/23 TI - ?Skip the Small Talk? Virtual Event Intended to Promote Social Connection During a Global Pandemic: Online Survey Study JO - JMIR Form Res SP - e28002 VL - 5 IS - 9 KW - COVID-19 KW - depression KW - digital group KW - loneliness KW - social connection KW - virtual social interaction KW - community KW - mental health KW - connection KW - virtual health N2 - Background: Social distancing measures meant to prevent the spread of COVID-19 in the past year have exacerbated loneliness and depression in the United States. While virtual tools exist to improve social connections, there have been limited attempts to assess community-based, virtual methods to promote new social connections. Objective: In this proof-of-concept study, we examined the extent to which Skip the Small Talk (STST)?a business dedicated to hosting events to facilitate structured, vulnerable conversations between strangers?helped reduce loneliness in a virtual format in the early months of the 2020 COVID-19 pandemic. We predicted that participants who attended STST virtual events would show a reduction in loneliness, improvement in positive affect, and reduction in negative affect after attending an event. We were also interested in exploring the role of depression symptoms on these results as well as the types of goals participants accomplished by attending STST events. Methods: Adult participants who registered for an STST virtual event between March 25 and June 30, 2020, completed a survey before attending the event (pre-event survey; N=64) and a separate survey after attending the event (postevent survey; n=25). Participants reported on their depression symptoms, loneliness, and positive and negative affect. Additionally, participants reported the goals they wished to accomplish as well as those they actually accomplished by attending the STST event. Results: The four most cited goals that participants hoped to accomplish before attending the STST event included the following: ?to make new friends,? ?to have deeper/better conversations with other people,? ?to feel less lonely,? and ?to practice social skills.? A total of 34% (20/58) of participants who completed the pre-event survey reported depression symptoms that indicated a high risk of a major depressive episode in the preceding 2 weeks. Of the 25 participants who completed the pre- and postevent surveys, participants reported a significant reduction in loneliness (P=.03, Cohen d=0.48) and negative affect (P<.001, Cohen d=1.52) after attending the STST event compared to before the event. Additionally, depressive symptoms were significantly positively correlated with change in negative affect (P=.03), suggesting that the higher the depression score was prior to attending the STST event, the higher the reduction in negative affect was following the event. Finally, 100% of the participants who wished to reduce their loneliness (11/11) or feel less socially anxious (5/5) prior to attending the STST event reported that they accomplished those goals after the event. Conclusions: Our preliminary assessment suggests that the virtual format of STST was helpful for reducing loneliness and negative affect for participants, including those experiencing depression symptoms, during the COVID-19 pandemic. While encouraging, additional research is necessary to demonstrate whether STST has benefits when compared to other social events and interventions and whether such benefits persist beyond the events themselves. UR - https://formative.jmir.org/2021/9/e28002 UR - http://dx.doi.org/10.2196/28002 UR - http://www.ncbi.nlm.nih.gov/pubmed/34468326 ID - info:doi/10.2196/28002 ER - TY - JOUR AU - Lu, Qian AU - Warmoth, Krystal AU - Chen, Lingjun AU - Wu, S. Christine AU - Chu, Qiao AU - Li, Yisheng AU - Gallagher, W. Matthew AU - Stanton, L. Annette AU - Kagawa Singer, Marjorie AU - Young, Lucy AU - Loh, Alice PY - 2021/9/22 TI - A Culturally Sensitive Social Support Intervention for Chinese American Breast Cancer Survivors (Joy Luck Academy): Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e30950 VL - 10 IS - 9 KW - social support KW - peer mentor support KW - randomized controlled trial KW - Chinese cancer survivors KW - breast cancer N2 - Background: Breast cancer is the most prevalent type of cancer among Asian American women. Chinese American immigrant breast cancer survivors face unique challenges because of cultural and socioecological factors. They report emotional distress and the need for social, emotional, and spiritual support. However, culturally and linguistically appropriate information for managing survivorship health care is often unavailable. Objective: To improve the health outcomes for this underserved and understudied population, we developed, designed, and launched a randomized controlled trial to test the health benefits of a culturally sensitive social support intervention (Joy Luck Academy). In this paper, we describe the research protocol. Methods: This randomized controlled trial will enroll Chinese-speaking, stage 0 to 3 breast cancer survivors who have completed treatment within the previous 36 months using a community-based participatory research approach. We will randomly assign 168 participants to the intervention or control group. The intervention arm will attend 7 weekly 3.5-hour peer mentor and educational sessions. The control group will receive the educational information. We will assess health outcomes at baseline, immediately after the Joy Luck Academy, and at 1- and 4-month follow-ups. The primary outcome is quality of life, as measured by the Functional Assessment of Cancer Therapy scale. Secondary outcomes include depressive symptoms, positive affect, fatigue, and perceived stress. We will also explore how the intervention influences cortisol levels. To identify how and to whom the program is effective, we will measure social and personal resources and theorized mechanisms and perform qualitative interviews with a subsample of participants to enhance the interpretation of quantitative data. Results: Recruitment began in February 2015, and data collection was completed in February 2019. We expect to complete data management by August 2021 and publish results in 2022. Conclusions: If the Joy Luck Academy is demonstrated to be effective, it may be easily disseminated as an intervention for other groups of Asian American immigrant breast cancer survivors. Furthermore, similar programs could be integrated into other diverse communities. Trial Registration: ClinicalTrials.gov NCT02946697; http://clinicaltrials.gov/ct2/show/NCT02946697. International Registered Report Identifier (IRRID): DERR1-10.2196/30950 UR - https://www.researchprotocols.org/2021/9/e30950 UR - http://dx.doi.org/10.2196/30950 UR - http://www.ncbi.nlm.nih.gov/pubmed/34550088 ID - info:doi/10.2196/30950 ER - TY - JOUR AU - Van Herck, Maarten AU - Goërtz, J. Yvonne M. AU - Houben-Wilke, Sarah AU - Machado, C. Felipe V. AU - Meys, Roy AU - Delbressine, M. Jeannet AU - Vaes, W. Anouk AU - Burtin, Chris AU - Posthuma, Rein AU - Franssen, E. Frits M. AU - Hajian, Bita AU - Vijlbrief, Herman AU - Spies, Yvonne AU - van 't Hul, J. Alex AU - Janssen, A. Daisy J. AU - Spruit, A. Martijn PY - 2021/9/21 TI - Severe Fatigue in Long COVID: Web-Based Quantitative Follow-up Study in Members of Online Long COVID Support Groups JO - J Med Internet Res SP - e30274 VL - 23 IS - 9 KW - COVID-19 KW - SARS-CoV-2 KW - long COVID KW - post-COVID-19 syndrome KW - post-acute sequelae of COVID-19 KW - fatigue KW - post-viral fatigue KW - pandemic KW - online health KW - mental health KW - online support N2 - Background: Fatigue is the most commonly reported symptom in patients with persistent complaints following COVID-19 (ie, long COVID). Longitudinal studies examining the intensity of fatigue and differentiating between physical and mental fatigue are lacking. Objective: The objectives of this study were to (1) assess the severity of fatigue over time in members of online long COVID peer support groups, and (2) assess whether members of these groups experienced mental fatigue, physical fatigue, or both. Methods: A 2-wave web-based follow-up study was conducted in members of online long COVID peer support groups with a confirmed diagnosis approximately 3 and 6 months after the onset of infectious symptoms. Demographics, COVID-19 diagnosis, received health care (from medical professionals or allied health care professionals), fatigue (Checklist Individual Strength?subscale subjective fatigue [CIS-Fatigue]; 8-56 points), and physical and mental fatigue (self-constructed questions; 3-21 points) were assessed. Higher scores indicated more severe fatigue. A CIS-Fatigue score ?36 points was used to qualify patients as having severe fatigue. Results: A total of 239 patients with polymerase chain reaction/computed tomography?confirmed COVID-19 completed the survey 10 weeks (SD 2) and 23 weeks (SD 2) after onset of infectious symptoms, respectively (T1 and T2). Of these 239 patients, 198 (82.8%) were women; 142 (59.4%) had no self-reported pre-existing comorbidities; 208 (87%) self-reported being in good health before contracting COVID-19; and 62 (25.9%) were hospitalized during acute infection. The median age was 50 years (IQR 39-56). The vast majority of patients had severe fatigue at T1 and T2 (n=204, 85.4%, and n=188, 78.7%, respectively). No significant differences were found in the prevalence of normal, mild, and severe fatigue between T1 and T2 (P=.12). The median CIS-Fatigue score was 48 points (IQR 42-53) at T1, and it decreased from T1 to T2 (median change: ?2 points, IQR ?7 to 3; P<.001). At T1, a median physical fatigue score of 19 points (IQR 16-20) and a median mental fatigue score of 15 points (IQR 10-17) were reported; these scores were lower at T2 for physical but not for mental fatigue (median change for physical fatigue ?1 point, IQR ?3 to 0, P<.001; median change for mental fatigue 0 points, IQR ?3 to 3, P=.52). At the time of completing the follow-up survey, 194/239 (81.2%) and 164/239 (68.6%) of all patients had received care from at least one medical professional and one allied health care professional, respectively. Conclusions: Fatigue in members of online long COVID support groups with a confirmed COVID-19 diagnosis decreases from 10 to 23 weeks after onset of symptoms. Despite this, severe fatigue remains highly prevalent. Both physical and mental fatigue are present. It remains unclear whether and to what extent fatigue will resolve spontaneously in the longer term. Trial Registration: Netherlands Trial Register NTR8705; https://www.trialregister.nl/trial/8705. UR - https://www.jmir.org/2021/9/e30274 UR - http://dx.doi.org/10.2196/30274 UR - http://www.ncbi.nlm.nih.gov/pubmed/34494964 ID - info:doi/10.2196/30274 ER - TY - JOUR AU - Li, Ji-Bin AU - Feng, Li-Fen AU - Wu, S. Anise M. AU - Mai, Jin-Chen AU - Chen, Yu-Xia AU - Mo, H. Phoenix K. AU - Lau, F. Joseph T. PY - 2021/9/21 TI - Roles of Psychosocial Factors on the Association Between Online Social Networking Use Intensity and Depressive Symptoms Among Adolescents: Prospective Cohort Study JO - J Med Internet Res SP - e21316 VL - 23 IS - 9 KW - online social networking use intensity KW - depressive symptoms KW - psychosocial factors KW - mediation and suppression KW - longitudinal study N2 - Background: The potential mechanisms underlying the association between online social networking use intensity and depressive symptoms are unclear and underresearched. Objective: We aimed to investigate the potential roles of interpersonal psychosocial factors on the association between online social networking use intensity and depressive symptoms among early adolescents. Methods: A total of 4237 adolescents from a 9-month longitudinal study were included. Score changes (indicated as ?) for the social function use intensity (SFUI) and entertainment function use intensity (EFUI) subscales of the Online Social Networking Activity Intensity Scale and for friendship quality, perceived family support, perceived friend support, parent?adolescent conflict, social nonconfidence, and depressive symptoms were analyzed. The potential mediation effects of unfavorable psychosocial factors and suppression effects of favorable psychosocial factors on the association of ?SFUI with ?CES-D and the association of ?EFUI with ?CES-D were tested using hierarchical regression models. Results: The association between ?SFUI and ?CES-D was partially mediated by ?mother?adolescent conflict (mediation effect size 5.11%, P=.02) and ?social nonconfidence (mediation effect size 20.97%, P<.001) but partially suppressed by ?friendship quality, ?perceived family support, and ?perceived friend support, with suppression effects of ?0.011 (P=.003), ?0.009 (P=.003), and ?0.022 (P<.001), respectively. The association between ?EFUI and ?CES-D was partially mediated by ?social nonconfidence (mediation effect size 30.65%, P<.001) but partially suppressed by ?perceived family support and ?perceived friend support, with suppression effects of ?0.036 (P<.001) and ?0.039 (P<.001), respectively. Conclusions: The association between online social networking use intensity and depressive symptoms was partially mediated through the indirect increase in social nonconfidence and mother?adolescent conflict; however, better perceived social support and friendship quality would partially compensate for the harmful impact of online social networking use intensity on depressive symptoms among early adolescents. UR - https://www.jmir.org/2021/9/e21316 UR - http://dx.doi.org/10.2196/21316 UR - http://www.ncbi.nlm.nih.gov/pubmed/34546173 ID - info:doi/10.2196/21316 ER - TY - JOUR AU - Shpigelman, Noa Carmit AU - Tal, Amir AU - Zisman-Ilani, Yaara PY - 2021/9/21 TI - Digital Community Inclusion of Individuals With Serious Mental Illness: A National Survey to Map Digital Technology Use and Community Participation Patterns in the Digital Era JO - JMIR Ment Health SP - e28123 VL - 8 IS - 9 KW - mobile health KW - technology KW - digital community participation KW - digital community inclusion KW - serious mental illness KW - recovery N2 - Background: Despite the growing interest in developing and using mobile health (mHealth) and digital technologies in mental health, little is known about the scope and nature of virtual community inclusion. Objective: The overarching goal of this study was to understand and conceptualize virtual community inclusion of individuals with serious mental illness (SMI). Specific objectives of this study were as follows: (1) mapping the prevalence, trends, and experiences related to mHealth and digital technology use among individuals with SMI; (2) comparing patterns of technology use by individuals with and those without SMI; and (3) examining whether use of mHealth and digital technologies predicts recovery among individuals with SMI. Methods: A web-based survey of technology use and virtual participation was developed and distributed among adults with and those without SMI via social media, national email discussion lists, nonprofit organizations, and advocacy groups. Results: A total of 381 adults aged 18 years or older participated in the survey, of whom 199 (52%) identified as having a SMI. Participants with SMI reported significantly greater access to technology and significantly fewer days of face-to-face participation in community activities than those without SMI. Among participants with SMI, greater technology use was positively associated with positive emotions and significantly predicted recovery. Conclusions: This study is the first to explore, map, and conceptualize virtual community inclusion among adults with SMI. Our findings indicate a gap in the literature and research on community inclusion and participation, and emphasize the need for virtual community inclusion, particularly during the COVID-19 pandemic and its future implications. UR - https://mental.jmir.org/2021/9/e28123 UR - http://dx.doi.org/10.2196/28123 UR - http://www.ncbi.nlm.nih.gov/pubmed/34546177 ID - info:doi/10.2196/28123 ER - TY - JOUR AU - Isse, Naohi AU - Tachibana, Yuki AU - Kinoshita, Makiko AU - Fetters, D. Michael PY - 2021/9/20 TI - Evaluating Outcomes of a Social Media?Based Peer and Clinician-Supported Smoking Cessation Program in Preventing Smoking Relapse: Mixed Methods Case Study JO - JMIR Form Res SP - e25883 VL - 5 IS - 9 KW - communication KW - mixed methods case study research KW - online social networking KW - smoking cessation KW - smoking relapse N2 - Background: Smoking relapse prevention after completion of a smoking cessation program is highly germane to reducing smoking rates. Objective: The purpose of this study was to evaluate the 1-year outcomes of a social media?based and peer and clinician-supported smoking cessation program on Facebook and examine communication patterns that could support smoking cessation and identify risk of relapse. Methods: We used a mixed methods case study evaluation approach featuring a single-case holistic design. We recruited volunteers who signed up after successful completion of a 12-week clinical smoking cessation program in a general medicine department in Japan. Participants contemporaneously accessed a closed Facebook page, and we analyzed their posts including text and emoticons. We used joint display analysis, which involved iterative structuring and restructuring construct-specific tables with both types of data to find the most effective approach for integrating the quantitative results with the qualitative results of content analysis. Results: One successful participant and 2 relapsed participants were analyzed to explore the specific patterns of postings prior to relapse. Decisive comments about quitting smoking were common among participants, but encouraging messages for peers were more common from the successful participant. Comments seeking social support and reassurance were warning signs of relapse. Conflicted comments also may be a warning sign of relapse risk. Conclusions: These findings based on a mixed methods case study of a social media platform supporting smoking cessation could be used to guide messaging in other online social networking service communities after a smoking cessation program to help reduce smoking relapse. Trial Registration: UMIN Clinical Trials Registry UMIN000031172; https://upload.umin.ac.jp/cgi-open-bin/ctr/ctr_view.cgi?recptno=R000035595 UR - https://formative.jmir.org/2021/9/e25883 UR - http://dx.doi.org/10.2196/25883 UR - http://www.ncbi.nlm.nih.gov/pubmed/34542412 ID - info:doi/10.2196/25883 ER - TY - JOUR AU - Pasko, Kristen AU - Arigo, Danielle PY - 2021/9/15 TI - The Roles of Social Comparison Orientation and Regulatory Focus in College Students? Responses to Fitspiration Posts on Social Media: Cross-sectional Study JO - JMIR Ment Health SP - e26204 VL - 8 IS - 9 KW - social media KW - college KW - fitspiration KW - subjective well-being KW - social comparison KW - regulatory focus KW - perception KW - well-being KW - young adult KW - college student KW - cross-sectional KW - motivation N2 - Background: Information shared via social media influences college students? self-perceptions and behavior, particularly, ?fitspiration? posts (ie, images of healthy food, people exercising, or fitness quotations). There are mixed findings regarding the mental health implications of fitspiration and its potential to motivate healthy behavior. Individual differences such as social comparison orientation and regulatory focus could aid in determining for whom fitspiration may be helpful versus harmful, though these characteristics have received limited attention in terms of students? fitspiration perceptions. Objective: This cross-sectional study examined associations between students? fitspiration use (ie, intentional versus unintentional exposure while using social media), response tendencies (ie, feelings about the self and motivation to be physically active), social comparison orientation, and regulatory focus. Methods: College students (N=344; 239/344, 69.5% women) completed an electronic survey in which they self-reported demographic information, the frequency of their social media use, exposure to fitspiration posts, typical feelings in response to fitspiration posts, and typical motivation for physical activity after viewing fitspiration posts. They also completed validated self-report measures of social comparison orientation and regulatory focus. Results: College students reported frequent exposure to fitspiration posts on social media and that they experienced negative feelings in response to these posts more often than positive feelings. Average motivation for physical activity was rated as feeling motivated ?some of the time.? However, students who reported more negative feelings after viewing fitspiration also reported greater motivation to be physically active after exposure. Associations between the frequency of intentional fitspiration use and motivation for physical activity after viewing fitspiration posts were moderated by social comparison orientation (b=?0.01, P=.03) but not by regulatory focus (b=?0.002, P=.67). Conclusions: Negative feelings about the self may be motivating for students with weak social comparison orientation, as fitspiration may highlight a discrepancy between one?s real and ideal self that does not prompt dejection or disengagement. However, negative feelings for prevention-focused students might not be as motivating because there are no salient negative models to avoid. Further research into these associations is warranted and could inform future efforts to promote student health and well-being during college. UR - https://mental.jmir.org/2021/9/e26204 UR - http://dx.doi.org/10.2196/26204 UR - http://www.ncbi.nlm.nih.gov/pubmed/34524965 ID - info:doi/10.2196/26204 ER - TY - JOUR AU - Charmaraman, Linda AU - Hodes, Rachel AU - Richer, M. Amanda PY - 2021/9/15 TI - Young Sexual Minority Adolescent Experiences of Self-expression and Isolation on Social Media: Cross-sectional Survey Study JO - JMIR Ment Health SP - e26207 VL - 8 IS - 9 KW - social media KW - social networking sites KW - sexual minorities KW - cyberbullying KW - depression KW - loneliness KW - self-harm KW - social support KW - adolescents N2 - Background: Early adolescent years are marked by pervasive self- and peer-regulation regarding gender and sexuality norms, which can affect the mental well-being of sexual minority youth. During this developmental period, social media use is also emerging as a dominant mode of communication with peers, allowing for both risk and resilient behaviors that can impact well-being. Objective: This exploratory study aims to examine how sexual minorities in middle school use social media, who they are connected to and for what purposes, and the associations between these behaviors and mental well-being compared with their heterosexual peers. Methods: In our cross-sectional survey study of 1033 early adolescents aged between 10 and 16 years (average age 12.7, SD 1.21 years) from 4 middle school sites in the Northeastern United States, we conducted an exploratory study comparing sexual minorities (212/873, 24.3% of sample with known sexual orientation) with their heterosexual peers (n=661), obtaining an 84.46% (1033/1223; total possible) response rate. Results: Sexual minorities reported having smaller networks on their favorite social media website (?=?.57; P<.001), less often responded positively when friends shared good news (?=?.35; P=.002), and less often tried to make friends feel better when they shared bad news (?=?.30; P=.01). However, sexual minorities more often reported joining a group or web-based community to make themselves feel less alone (?=.28; P=.003), unlike heterosexual youth. Sexual minorities had higher averages of loneliness and social isolation (?=.19; P<.001) than heterosexual students. Sexual minorities were also twice as likely to have tried to harm themselves in the past (?=.81; odds ratio [OR] 2.24, 95% CI 1.64-3.06; P<.001) and were more likely to have symptoms that reached the Center for Epidemiological Studies-Depression definition of depression (?=.15; OR 1.16, 95% CI 1.08-1.25; P<.001). About 39.1% (83/212) of sexual minorities had no one to talk to about their sexual orientation. Sexual minorities were 1.5 times more likely to have joined a social media website their parents would disapprove (?=.41; OR 1.50, 95% CI 1.14-1.97; P=.004) and more likely to report seeing videos related to self-harm (?=.33; OR 1.39, 95% CI 1.06-1.83; P=.02) on the web than heterosexual youth. Conclusions: Given previous reports of supportive and safe web-based spaces for sexual minority youth, our findings demonstrated that sexual minority youth prefer to maintain small, close-knit web-based communities (apart from their families) to express themselves, particularly when reaching out to web-based communities to reduce loneliness. Future longitudinal studies could determine any bidirectional influences of mental well-being and social media use in sexual minorities during this difficult developmental period. UR - https://mental.jmir.org/2021/9/e26207 UR - http://dx.doi.org/10.2196/26207 UR - http://www.ncbi.nlm.nih.gov/pubmed/34524107 ID - info:doi/10.2196/26207 ER - TY - JOUR AU - Campos-Castillo, Celeste AU - Thomas, Jason Brian AU - Reyes, Felipe AU - Laestadius, Irina Linnea PY - 2021/9/15 TI - Seeking Help From Trusted Adults in Response to Peers? Social Media Posts About Mental Health Struggles: Qualitative Interview Study Among Latinx Adolescents JO - JMIR Ment Health SP - e26176 VL - 8 IS - 9 KW - adolescents KW - confidants KW - ethnicity KW - gender KW - network resources KW - privacy KW - race KW - social media KW - social support KW - tie activation KW - trust N2 - Background: Rather than confiding in adults about their mental health struggles, adolescents may use social media to disclose them to peers. Disclosure recipients are tasked with deciding whether to alert an adult and, if so, whom to alert. Few studies have examined how adolescents decide on a trusted adult to help a friend who posts on social media about his/her mental health struggles. Moreover, Latinx adolescents are underrepresented in research on social media use, which creates gaps in understanding how social media may influence their well-being. Objective: This qualitative study presents findings from semistructured interviews with Latinx adolescents to investigate how they seek out trusted adults when a friend posts on social media about their mental health struggles. Specifically, we sought to determine which adult ties they activated, the resources they believed the adult could provide, and the support they expected the adult to provide. Methods: We recruited participants through a nonprofit organization serving the Latinx community (primarily of Mexican origin) located in Milwaukee, Wisconsin. We conducted 43 semistructured interviews, each lasting 60-90 minutes, with Latinx adolescents (25 females, 18 males) aged 13-17 years. All interviews were conducted in English, at the adolescents? request. Using a grounded theory approach, we identified the nature of the relationship between the trusted adult and either the disclosure recipient or distressed friend, and the resources and support the trusted adult is expected to provide. Results: Participants nominated adults who were emotionally or physically proximate to either the disclosure recipient or distressed friend, particularly parents (of the recipient and friend) and school staff. However, some felt that not all parents and school staff were emotionally proximate. Adolescents sought trusted adults with access to two resources: experiential knowledge and authority. Some, particularly males, avoided adults with authority because of the risk of punishment and others thought their immigrant parents did not have relevant experiential knowledge to assist them. Interviewees felt that trusted adults with either resource could provide emotional and instrumental support either directly or indirectly, while those with experiential knowledge could provide informational support. Notably, interviews did not problematize the fact that the disclosure occurred on social media when deliberating about adults. Conclusions: To assist a distressed friend posting on social media, Latinx adolescents look not only for trusted adults who are emotionally and physically proximate but also those who have key resources that facilitate support. Efforts should focus on connecting adolescents with trusted adults and training adults who hold positions of authority or experiential knowledge to offer both direct and indirect support. Additionally, efforts should consider how immigrant experiences shape parent-child relations and address the potential long-term consequences of oversurveillance of Latinx youth, particularly males, by school staff for their access to social support. UR - https://mental.jmir.org/2021/9/e26176 UR - http://dx.doi.org/10.2196/26176 UR - http://www.ncbi.nlm.nih.gov/pubmed/34524088 ID - info:doi/10.2196/26176 ER - TY - JOUR AU - Beogo, Idrissa AU - Ramdé, Jean AU - Nguemeleu Tchouaket, Eric AU - Sia, Drissa AU - Bationo, Jean-Claude Nebila AU - Collin, Stephanie AU - Anne, Abdoulaye AU - Gagnon, Marie-Pierre PY - 2021/9/15 TI - Co-Development of a Web-Based Hub (eSocial-hub) to Combat Social Isolation and Loneliness in Francophone and Anglophone Older People in the Linguistic Minority Context (Quebec, Manitoba, and New Brunswick): Protocol for a Mixed Methods Interventional Study JO - JMIR Res Protoc SP - e30802 VL - 10 IS - 9 KW - older people KW - nursing facility KW - nursing home KW - long-term care home KW - linguistic minority KW - digital health KW - COVID-19 KW - social isolation KW - loneliness KW - older adults KW - development KW - isolation KW - minority KW - community N2 - Background: The first wave of the COVID-19 pandemic has severely hit Canadian nursing facilities (81% of deaths). To this toll, public health measures (eg, visitation restriction) have subsequently deepened the social isolation and loneliness of residents in nursing facilities (NFs), especially those in linguistic minority settings: Anglophone institutions in Quebec and Francophone institutions outside Quebec. However, very few COVID-19 initiatives targeting these populations specifically have been documented. Given the limited number of NFs serving linguistic minorities in Canadian populations, families and loved ones often live far from these facilities, sometimes even in other provinces. This context places the digital solutions as particularly relevant for the present COVID-19 pandemic as well as in the post?COVID-19 era. Objective: This project aims to co-develop a virtual community of practice through a web-based platform (eSocial-hub) to combat social isolation and loneliness among the older people in linguistic minority settings in Canada. Methods: An interventional study using a sequential mixed methods design will be conducted. Four purposely selected NFs will be included, 2 among facilities in Manitoba and 2 in New Brunswick; and 2 Anglophone NFs in Quebec will serve as knowledge users. The development of eSocial-hub will include an experimental 4-month phase involving the following end users: (1) older people (n=3 per NF), (2) families of the participating older people (n=3 per NF), and (3) frontline staff (nurse and health care aid; n=2 per NF). Results: Activities and solutions aiming at reducing social isolation and loneliness will be implemented and then evaluated with the project stakeholders, and the best practices generated. The assessment will be conducted using indicators derived from the 5 domains of the Consolidated Framework for Implementation Research. The project will be led by an interdisciplinary team and will involve a multisectoral partnership. Conclusions: The project will develop a promising and generalizable solution that uses virtual technology to help reduce social isolation and loneliness among the older people. International Registered Report Identifier (IRRID): PRR1-10.2196/30802 UR - https://www.researchprotocols.org/2021/9/e30802 UR - http://dx.doi.org/10.2196/30802 UR - http://www.ncbi.nlm.nih.gov/pubmed/34464326 ID - info:doi/10.2196/30802 ER - TY - JOUR AU - Lu, Xinyi AU - Zhang, Runtong PY - 2021/9/13 TI - Association Between eHealth Literacy in Online Health Communities and Patient Adherence: Cross-sectional Questionnaire Study JO - J Med Internet Res SP - e14908 VL - 23 IS - 9 KW - online health communities KW - OHCs KW - eHealth literacy KW - patient adherence KW - health information KW - physician-patient communication N2 - Background: eHealth literacy is significantly associated with patients? online information behavior, physician-patient relationship, patient adherence, and health outcomes. As an important product of the internet, online health communities (OHCs) can help redistribute idle medical resources, increase medical resource utilization, and improve patient adherence. However, studies on eHealth literacy in OHCs are limited. Therefore, this study examined patients? eHealth literacy regarding health information?seeking behavior and physician-patient communication in OHCs. Objective: This study aimed to investigate the association between eHealth literacy in OHCs and patient adherence by employing social cognitive theory. Methods: This was an empirical study, in which a research model consisting of 1 independent variable (patients? eHealth literacy), 3 mediators (physician-patient communication in OHCs, patient health information?seeking behavior in OHCs, and patients? perceived quality of health information in OHCs), 1 dependent variable (patient adherence), and 4 control variables (age, gender, living area, and education level) was established to examine the associations. Multi-item scales were used to measure variables. An anonymous online survey involving 560 participants was conducted through Chinese OHCs in July 2018 to collect data. Partial least squares and structural equation modeling were adopted to analyze data and test hypotheses. Results: The survey response rate was 79.6% (446/560). The reliability, convergent validity, and discriminant validity were acceptable. Age, gender, living area, and education level were positively associated with patient adherence, and gender was positively associated with physician-patient communication and patients? perceived quality of internet health information in OHCs. Patients? eHealth literacy was positively associated with patient adherence through the mediations of physician-patient communication, internet health information?seeking behavior, and perceived quality of internet health information in OHCs. Conclusions: Results indicate that physician-patient communication, internet health information?seeking behavior, and the perceived quality of internet health information are significantly associated with improving patient adherence via a guiding of eHealth literacy in OHCs. These findings suggest that physicians can understand and guide their patients? eHealth literacy to improve treatment efficiency; OHCs? operators should this strengthen the management of information quality, develop user-friendly features, and minimize the gap between the actual and perceived information quality. UR - https://www.jmir.org/2021/9/e14908 UR - http://dx.doi.org/10.2196/14908 UR - http://www.ncbi.nlm.nih.gov/pubmed/34515638 ID - info:doi/10.2196/14908 ER - TY - JOUR AU - Blasi, Livio AU - Bordonaro, Roberto AU - Serretta, Vincenzo AU - Piazza, Dario AU - Firenze, Alberto AU - Gebbia, Vittorio PY - 2021/9/10 TI - Virtual Clinical and Precision Medicine Tumor Boards?Cloud-Based Platform?Mediated Implementation of Multidisciplinary Reviews Among Oncology Centers in the COVID-19 Era: Protocol for an Observational Study JO - JMIR Res Protoc SP - e26220 VL - 10 IS - 9 KW - virtual tumor board KW - multidisciplinary collaboration KW - oncology KW - multidisciplinary communication KW - health services KW - multidisciplinary oncology consultations KW - virtual health KW - digital health KW - precision medicine KW - tumor KW - cancer KW - cloud-based KW - platform KW - implementation KW - COVID-19 N2 - Background: Multidisciplinary tumor boards play a pivotal role in the patient-centered clinical management and in the decision-making process to provide best evidence-based, diagnostic, and therapeutic care to patients with cancer. Among the barriers to achieve an efficient multidisciplinary tumor board, lack of time and geographical distance play a major role. Therefore, the elaboration of an efficient virtual multidisciplinary tumor board (VMTB) is a key point to successfully obtain an oncology team and implement a network among health professionals and institutions. This need is stronger than ever during the COVID-19 pandemic. Objective: This paper presents a research protocol for an observational study focused on exploring the structuring process and the implementation of a multi-institutional VMTB in Sicily, Italy. Other endpoints include analysis of cooperation between participants, adherence to guidelines, patients? outcomes, and patient satisfaction. Methods: This protocol encompasses a pragmatic, observational, multicenter, noninterventional, prospective trial. The study?s programmed duration is 5 years, with a half-yearly analysis of the primary and secondary objectives? measurements. Oncology care health professionals from various oncology subspecialties at oncology departments in multiple hospitals (academic and general hospitals as well as tertiary centers and community hospitals) are involved in a nonhierarchic manner. VMTB employs an innovative, virtual, cloud-based platform to share anonymized medical data that are discussed via a videoconferencing system both satisfying security criteria and compliance with the Health Insurance Portability and Accountability Act. Results: The protocol is part of a larger research project on communication and multidisciplinary collaboration in oncology units and departments spread in the Sicily region. The results of this study will particularly focus on the organization of VMTBs, involving oncology units present in different hospitals spread in the area, and creating a network to allow best patient care pathways and a hub-and-spoke relationship. The present results will also include data concerning organization skills and pitfalls, barriers, efficiency, number, and types with respect to clinical cases and customer satisfaction. Conclusions: VMTB represents a unique opportunity to optimize patient management through a patient-centered approach. An efficient virtualization and data-banking system is potentially time-saving, a source for outcome data, and a detector of possible holes in the hull of clinical pathways. The observations and results from this VMTB study may hopefully be useful to design nonclinical and organizational interventions that enhance multidisciplinary decision-making in oncology. International Registered Report Identifier (IRRID): DERR1-10.2196/26220 UR - https://www.researchprotocols.org/2021/9/e26220 UR - http://dx.doi.org/10.2196/26220 UR - http://www.ncbi.nlm.nih.gov/pubmed/34387553 ID - info:doi/10.2196/26220 ER - TY - JOUR AU - Andy, Anietie AU - Andy, Uduak PY - 2021/9/7 TI - Understanding Communication in an Online Cancer Forum: Content Analysis Study JO - JMIR Cancer SP - e29555 VL - 7 IS - 3 KW - Cancer KW - Reddit KW - online forum KW - natural language processing KW - latent Dirichlet allocation KW - Linguistic Inquiry and Word Count KW - psycholinguistics KW - social media N2 - Background: Cancer affects individuals, their family members, and friends, and increasingly, some of these individuals are turning to online cancer forums to express their thoughts/feelings and seek support such as asking cancer-related questions. The thoughts/feelings expressed and the support needed from these online forums may differ depending on if (1) an individual has or had cancer or (2) an individual is a family member or friend of an individual who has or had cancer; the language used in posts in these forums may reflect these differences. Objective: Using natural language processing methods, we aim to determine the differences in the support needs and concerns expressed in posts published on an online cancer forum by (1) users who self-declare to have or had cancer compared with (2) users who self-declare to be family members or friends of individuals with or that had cancer. Methods: Using latent Dirichlet allocation (LDA), which is a natural language processing algorithm and Linguistic Inquiry and Word Count (LIWC), a psycholinguistic dictionary, we analyzed posts published on an online cancer forum with the aim to delineate the language features associated with users in these different groups. Results: Users who self-declare to have or had cancer were more likely to post about LDA topics related to hospital visits (Cohen d=0.671) and use words associated with LIWC categories related to health (Cohen d=0.635) and anxiety (Cohen d=0.126). By contrast, users who declared to be family members or friends tend to post about LDA topics related to losing a family member (Cohen d=0.702) and LIWC categories focusing on the past (Cohen d=0.465) and death (Cohen d=0.181) were more associated with these users. Conclusions: Using LDA and LIWC, we show that there are differences in the support needs and concerns expressed in posts published on an online cancer forum by users with cancer compared with family members or friends of those with cancer. Hence, responders to online cancer forums need to be cognizant of these differences in support needs and concerns and tailor their responses based on these findings. UR - https://cancer.jmir.org/2021/3/e29555 UR - http://dx.doi.org/10.2196/29555 UR - http://www.ncbi.nlm.nih.gov/pubmed/34491209 ID - info:doi/10.2196/29555 ER - TY - JOUR AU - Kobori, Osamu AU - Yoshinaga, Naoki PY - 2021/9/7 TI - Investigation of the Effects of an Online Support Group for Mental Health Problems on Stigma and Help-Seeking Among Japanese Adults: Cross-sectional Study JO - JMIR Form Res SP - e21348 VL - 5 IS - 9 KW - online support group KW - mental health KW - depression KW - stigma KW - help-seeking N2 - Background: Online support groups vary widely in both goals and structures owing to the rapid development of social networking services. Several studies have shown the potential effectiveness of online support groups, such as reducing psychological distress (eg, depression) among individuals with mental health problems. However, online support groups often do not aim at effectiveness regarding distress relief?related outcomes. Objective: This study aims to examine whether the use frequency of online support group platform functions (U2plus) is associated with lower stigma and higher consumer activation. Methods: A total of 350 U2plus users participated in a web-based survey. They were asked what therapy they had received in the past and how often they logged on to it, used each of its functions, and completed the following questionnaires: the Patient Health Questionnaire-9, the Devaluation-Discrimination Scale, and the General Help-Seeking Questionnaire. Results: Regarding the therapy received, 88% (308/350) of participants had taken medication for mental health problems, and 66.6% (233/350) had received psychotherapy or mental health counseling. Regarding use frequency, 21.7% (74/341) of the participants signed in to U2plus and used its functions more than once a week. The use frequency of U2plus functions was not correlated with perceived stigma, but the use frequency of some functions was weakly correlated with help-seeking intentions from formal sources (eg, doctors and psychologists). However, multiple regression analyses revealed that the use frequency of those functions did not uniquely predict help-seeking intentions. Conclusions: It was suggested that online support groups may serve as an alternative treatment option for those who are already undergoing pharmacological treatment and are willing to seek help from whatever source they deem helpful. UR - https://formative.jmir.org/2021/9/e21348 UR - http://dx.doi.org/10.2196/21348 UR - http://www.ncbi.nlm.nih.gov/pubmed/34491206 ID - info:doi/10.2196/21348 ER - TY - JOUR AU - Shalaby, Reham AU - Hrabok, Marianne AU - Spurvey, Pamela AU - Abou El-Magd, M. Rabab AU - Knox, Michelle AU - Rude, Rebecca AU - Vuong, Wesley AU - Surood, Shireen AU - Urichuk, Liana AU - Snaterse, Mark AU - Greenshaw, J. Andrew AU - Li, Xin-Min AU - Agyapong, Opoku Vincent Israel PY - 2021/9/3 TI - Recovery Following Peer and Text Messaging Support After Discharge From Acute Psychiatric Care in Edmonton, Alberta: Controlled Observational Study JO - JMIR Form Res SP - e27137 VL - 5 IS - 9 KW - peer support KW - recovery KW - controlled observational study KW - inpatients KW - mental health KW - supportive text messages N2 - Background: Peer support is an emotional, social, and practical help provided by nonprofessionals to assist others in sustaining health behaviors. Peer support is valued in recovery-oriented models of mental health and is becoming increasingly implemented at the organizational level. Text messaging is a relatively low-cost, high-impact, and easily scalable program that uses existing technology, is devoid of geographic barriers, and is easily accessible to end users. Objective: This study aims to evaluate the effectiveness of an innovative peer support system plus a supportive text messaging program on the recovery of discharged patients from acute psychiatric care. Methods: This prospective, rater blinded, controlled observational study included 181 patients who were discharged from acute psychiatric care. Patients were randomized to one of four conditions: treatment as usual (follow-up care), daily supportive text messages only, peer support only, or peer support plus daily supportive text messages. A standardized self-report measure of recovery (Recovery Assessment Scale [RAS]) was completed at baseline, 6 weeks, 3 months, and 6 months. Descriptive analysis, one-way analysis of variance, and repeated measures multivariate analysis of covariance were used to examine the changes in the RAS among the study groups and over the follow-up time points. Results: A total of 65 patients completed the assessments at each time point. For the overall sample, higher scores were found for the peer support plus text message condition compared with the text message only and treatment as usual condition on several scales (ie, willingness to ask for help and personal confidence and hope) and total score on the RAS, after 6 months of intervention. Conclusions: Peer support plus supportive text messaging seems to result in improved recovery compared with other interventions. It may be advisable to incorporate the two interventions as part of routine practice for patients with psychiatric disorders upon hospital discharge. UR - https://formative.jmir.org/2021/9/e27137 UR - http://dx.doi.org/10.2196/27137 UR - http://www.ncbi.nlm.nih.gov/pubmed/34477565 ID - info:doi/10.2196/27137 ER - TY - JOUR AU - Lazard, J. Allison AU - Collins, Reffner Meredith K. AU - Hedrick, Ashley AU - Varma, Tushar AU - Love, Brad AU - Valle, G. Carmina AU - Brooks, Erik AU - Benedict, Catherine PY - 2021/9/2 TI - Using Social Media for Peer-to-Peer Cancer Support: Interviews With Young Adults With Cancer JO - JMIR Cancer SP - e28234 VL - 7 IS - 3 KW - cancer survivors KW - social support KW - peer groups KW - social media KW - young adults KW - pyscho-oncology KW - mobile phone N2 - Background: Web-based social support can address social isolation and unmet support needs among young adults with cancer (aged 18-39 years). Given that 94% of young adults own and use smartphones, social media can offer personalized, accessible social support among peers with cancer. Objective: This study aims to examine the specific benefits, downsides, and topics of social support via social media among young adults with cancer. Methods: We conducted semistructured interviews with young adults with cancer, aged between 18 and 39 years, who were receiving treatment or had completed treatment for cancer. Results: Most participants (N=45) used general audience platforms (eg, Facebook groups), and some cancer-specific social media (eg, Caring Bridge), to discuss relevant lived experiences for medical information (managing side effects and treatment uncertainty) and navigating life with cancer (parenting and financial issues). Participants valued socializing with other young adults with cancer, making connections outside their personal networks, and being able to validate their emotional and mental health experiences without time and physical constraints. However, using social media for peer support can be an emotional burden, especially when others post disheartening or harassing content, and can heighten privacy concerns, especially when navigating cancer-related stigma. Conclusions: Social media allows young adults to connect with peers to share and feel validated about their treatment and life concerns. However, barriers exist for receiving support from social media; these could be reduced through content moderation and developing more customizable, potentially cancer-specific social media apps and platforms to enhance one?s ability to find peers and manage groups. UR - https://cancer.jmir.org/2021/3/e28234 UR - http://dx.doi.org/10.2196/28234 UR - http://www.ncbi.nlm.nih.gov/pubmed/34473063 ID - info:doi/10.2196/28234 ER - TY - JOUR AU - Bautista, Robert John AU - Zhang, Yan AU - Gwizdka, Jacek PY - 2021/9/1 TI - US Physicians? and Nurses? Motivations, Barriers, and Recommendations for Correcting Health Misinformation on Social Media: Qualitative Interview Study JO - JMIR Public Health Surveill SP - e27715 VL - 7 IS - 9 KW - correction KW - COVID-19 KW - physicians KW - misinformation KW - infodemic KW - infodemiology KW - nurses KW - social media N2 - Background: Health misinformation is a public health concern. Various stakeholders have called on health care professionals, such as nurses and physicians, to be more proactive in correcting health misinformation on social media. Objective: This study aims to identify US physicians? and nurses? motivations for correcting health misinformation on social media, the barriers they face in doing so, and their recommendations for overcoming such barriers. Methods: In-depth interviews were conducted with 30 participants, which comprised 15 (50%) registered nurses and 15 (50%) physicians. Qualitative data were analyzed by using thematic analysis. Results: Participants were personally (eg, personal choice) and professionally (eg, to fulfill the responsibility of a health care professional) motivated to correct health misinformation on social media. However, they also faced intrapersonal (eg, a lack of positive outcomes and time), interpersonal (eg, harassment and bullying), and institutional (eg, a lack of institutional support and social media training) barriers to correcting health misinformation on social media. To overcome these barriers, participants recommended that health care professionals should receive misinformation and social media training, including building their social media presence. Conclusions: US physicians and nurses are willing to correct health misinformation on social media despite several barriers. Nonetheless, this study provides recommendations that can be used to overcome such barriers. Overall, the findings can be used by health authorities and organizations to guide policies and activities aimed at encouraging more health care professionals to be present on social media to counteract health misinformation. UR - https://publichealth.jmir.org/2021/9/e27715 UR - http://dx.doi.org/10.2196/27715 UR - http://www.ncbi.nlm.nih.gov/pubmed/34468331 ID - info:doi/10.2196/27715 ER - TY - JOUR AU - Wei, Chapman AU - Bernstein, Sophie AU - Adusumilli, Nagasai AU - Marchitto, Mark AU - Chen, Frank AU - Rajpara, Anand PY - 2021/8/26 TI - Assessment and Evaluation of Social Engagement in Dermatology Residency Programs on Instagram: Cross-sectional Study JO - JMIR Dermatol SP - e32105 VL - 4 IS - 2 KW - Instagram KW - social media KW - dermatology residency KW - Instagram engagement score KW - residency recruitment KW - medical education UR - https://derma.jmir.org/2021/2/e32105 UR - http://dx.doi.org/10.2196/32105 UR - http://www.ncbi.nlm.nih.gov/pubmed/37632856 ID - info:doi/10.2196/32105 ER - TY - JOUR AU - Oakley-Girvan, Ingrid AU - Watterson, L. Jessica AU - Jones, Cheryl AU - Houghton, C. Lauren AU - Gibbons, P. Marley AU - Gokal, Kajal AU - Magsamen-Conrad, Kate PY - 2021/7/30 TI - Use of Social Media for Cancer Prevention Through Neighborhood Social Cohesion: Protocol for a Feasibility Study JO - JMIR Res Protoc SP - e28147 VL - 10 IS - 7 KW - social cohesion KW - mothers KW - neighborhood KW - physical activity KW - social media KW - social KW - behavior KW - health outcomes KW - socioeconomic status KW - community health KW - chronic disease KW - social network KW - feasibility KW - wellbeing KW - cancer N2 - Background: Social cohesion is associated with healthier behaviors and better health outcomes, and therefore may offer a mechanism for promoting better health. Low socioeconomic status (SES) communities face higher rates of chronic disease due to both community- and individual-level factors. Objective: The aim of this study is to leverage social cohesion to promote healthier behaviors and prevent chronic disease in a low SES community. This protocol outlines the methodology for a pilot study to assess the feasibility of an intervention (Free Time For Wellness [FT4W]) using a social networking platform (Nextdoor) with mothers living in an urban, low-income community to improve social cohesion and promote healthy behaviors. Methods: The study will involve three phases: (I) co-designing the intervention with mothers in the neighborhoods of interest, (II) implementing the intervention with community leaders through the social networking platform, and (III) evaluating the intervention?s feasibility. Phase I of the study will include qualitative data collection and analysis from in-depth, semistructured interviews and a co-design group session with mothers. Phases II and III of the study include a pre- and postintervention survey of participating mothers. Neighborhood-level data on social cohesion will also be collected to enable comparison of outcomes between neighborhoods with higher and lower baseline social cohesion. Results: As of March 2021, recruitment and data collection for this study are complete. This protocol outlines our original study plan, although the final enrollment numbers and intervention implementation deviated from our initial planned methodology that is outlined in this protocol. These implementation learnings will be shared in subsequent publications of our study results. Conclusions: Ultimately, this study aims to: (1) determine the barriers and facilitators to finding free time for wellness among a population of low-income mothers to inform the co-design process, and (2) implement and study the feasibility of an intervention that leverages social cohesion to promote physical activity in a community of low-income mothers. The results of this study will provide preliminary feasibility evidence to inform a larger effectiveness trial, and will further our understanding of how social cohesion might influence well-being. International Registered Report Identifier (IRRID): RR1-10.2196/28147 UR - https://www.researchprotocols.org/2021/7/e28147 UR - http://dx.doi.org/10.2196/28147 UR - http://www.ncbi.nlm.nih.gov/pubmed/34328445 ID - info:doi/10.2196/28147 ER - TY - JOUR AU - Birrell, Louise AU - Furneaux-Bate, Ainsley AU - Chapman, Cath AU - Newton, C. Nicola PY - 2021/7/30 TI - A Mobile Peer Intervention for Preventing Mental Health and Substance Use Problems in Adolescents: Protocol for a Randomized Controlled Trial (The Mind Your Mate Study) JO - JMIR Res Protoc SP - e26796 VL - 10 IS - 7 KW - prevention KW - mental health KW - substance use KW - peer support KW - depression KW - anxiety KW - help-seeking KW - mobile phone N2 - Background: Anxiety, mood, and substance use disorders have significant social and economic impacts, which are largely attributable to their early age of onset and chronic disabling course. Therefore, it is critical to intervene early to prevent chronic and debilitating trajectories. Objective: This paper describes the study protocol of a CONSORT (Consolidated Standards of Reporting Trials)-compliant randomized controlled trial for evaluating the effectiveness of the Mind your Mate program, a mobile health (mHealth) peer intervention that aims to prevent mental health (focusing on anxiety and depression) and substance use problems in adolescents. Methods: Participants will consist of approximately 840 year 9 or year 10 students (60 students per grade per school) from 14 New South Wales high schools in Sydney, Australia. Schools will be recruited from a random selection of independent and public schools across the New South Wales Greater Sydney Area by using publicly available contact details. The intervention will consist of 1 introductory classroom lesson and a downloadable mobile app that will be available for use for 12 months. Schools will be randomly allocated to receive either the mHealth peer intervention or a waitlist control (health education as usual). All students will be given web-based self-assessments at baseline and at 6- and 12-month follow-ups. The primary outcomes of the trial will be the self-reported use of alcohol and drugs, anxiety and depression symptoms, knowledge about mental health and substance use, motives for not drinking, and willingness to seek help. Secondary outcomes will include positive well-being, the quality of life, and the impact of the COVID-19 pandemic. Analyses will be conducted using mixed-effects linear regression analyses for normally distributed data and mixed-effects logistic regression analyses for categorical data. Results: The Mind your Mate study was funded by an Australian Rotary Health Bruce Edwards Postdoctoral Research Fellowship from 2019 to 2022. Some of the development costs for the Mind your Mate intervention came from a seed funding grant from the Brain and Mind Centre of the University of Sydney. The enrollment of schools began in July 2020; 12 of 14 schools were enrolled at the time of submission. Baseline assessments are currently underway, and the first results are expected to be submitted for publication in 2022. Conclusions: The Mind your Mate study will generate vital new knowledge about the effectiveness of a peer support prevention strategy in real-world settings for the most common mental disorders in youth. If effective, this intervention will constitute a scalable, low-cost prevention strategy that has significant potential to reduce the impact of mental and substance use disorders. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12620000753954; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=379738&isReview=true International Registered Report Identifier (IRRID): DERR1-10.2196/26796 UR - https://www.researchprotocols.org/2021/7/e26796 UR - http://dx.doi.org/10.2196/26796 UR - http://www.ncbi.nlm.nih.gov/pubmed/34328426 ID - info:doi/10.2196/26796 ER - TY - JOUR AU - Scholl, Julia AU - Kohls, Elisabeth AU - Görges, Frauke AU - Steinbrecher, Marc AU - Baldofski, Sabrina AU - Moessner, Markus AU - Rummel-Kluge, Christine PY - 2021/7/23 TI - Acceptability and Feasibility of the Transfer of Face-to-Face Group Therapy to Online Group Chats in a Psychiatric Outpatient Setting During the COVID-19 Pandemic: Longitudinal Observational Study JO - JMIR Form Res SP - e27865 VL - 5 IS - 7 KW - online KW - group chats KW - COVID-19 pandemic KW - psychiatric outpatient setting KW - online interventions KW - e-mental health KW - COVID-19 KW - pandemic KW - mental health KW - psychoeducation KW - online chat N2 - Background: At the height of the COVID-19 pandemic, several mental health care providers were obliged to shut down outpatient services, including group therapy and psychoeducational sessions. The lockdown in many countries is a serious threat to people?s mental well-being, especially for individuals with severe mental illnesses. Discontinued outpatient treatments and disruption of daily routines are considered to be risk factors for destabilization of patients with mental illness. Objective: The aim of this study was to evaluate the acceptability, usability, and feasibility of a group chat program to replace cancelled face-to-face group sessions in an outpatient psychiatric department. Methods: Participants (N=33) were recruited in the outpatient department of a large university medical center in Leipzig, Germany. Former face-to-face group participants were invited to take part in a therapist-guided group-chat for 4 weeks (8 sessions) and were asked to evaluate the program via self-administered standardized questionnaires at baseline (T0, preintervention), after every chat session (T1), and posttreatment (T2, after 4-6 weeks). The chat groups were specific to the following mental disorder diagnoses and based on the same therapeutic principles and techniques as the former face-to-face groups: anxiety, depression, obsessive-compulsive disorder, and adult attention-deficit/hyperactivity disorder (ADHD). Sociodemographic measures, attitudes toward the COVID-19 pandemic, depressive symptoms (Patient Health Questionnaire-9), quality of life (abbreviated World Health Organization Quality of Life assessment), treatment credibility/expectancy (Credibility Expectancy Questionnaire), and participants? satisfaction (Client Satisfaction Questionnaire-8 [ZUF-8]) were measured. Results: Participants joined an average of 5 out of 8 offered chat sessions. Participation rates in the respective groups were highest in the ADHD group (8.6/11, 78%) and lowest in the anxiety group (3.7/9, 41%). The overall preintervention level of depressive symptoms was moderate and showed a slight,nonsignificant improvement at posttreatment (T0: mean 10.7, SD 5.5; T2: mean 10.2, SD 5.5).A similar result was observed regarding quality of life (T0: median 41.7-68.8; T2: median 50-70.3). Treatment credibility and expectancy scores were medium-high (T0: meancredibility 18.1, SD 3.8; meanexpectancy 11.2, SD 5.1; T2: meancredibility 17.1, SD 4.8; meanexpectancy 10.3, SD 5.8). Further, significant correlations were detected between posttreatment expectancy score and posttreatment PHQ-9 score (r=?0.41, P=.02), posttreatment physical quality of life (r=0.54, P=.001), and posttreatment psychological quality of life (r=0.53, P=.002). Overall, participants? satisfaction with the program was very high, both after chat sessions and at posttreatment (ZUF-8: mean score 20.6, SD 1.0). Of all participants, a majority (27/31, 87%) rated the program as excellent/good and indicated they would recommend the group chat program to a friend in need of similar help (23/31, 74%). Conclusions: A therapist-guided group chat program to substitute outpatient group setting treatment during the COVID-19 lockdown was shown to be feasible, usable, and highly acceptable for participants. Web-based programs such as this one provide an easy-to-implement tool to successfully stabilize participants during a difficult time, such as the COVID-19 pandemic. Trial Registration: German Clinical Trials Register DRKS00021527; https://tinyurl.com/3btyxc2r UR - https://formative.jmir.org/2021/7/e27865 UR - http://dx.doi.org/10.2196/27865 UR - http://www.ncbi.nlm.nih.gov/pubmed/34161252 ID - info:doi/10.2196/27865 ER - TY - JOUR AU - Jong, Wesley AU - Liang, Stella Ou AU - Yang, C. Christopher PY - 2021/7/22 TI - The Exchange of Informational Support in Online Health Communities at the Onset of the COVID-19 Pandemic: Content Analysis JO - JMIRx Med SP - e27485 VL - 2 IS - 3 KW - COVID-19 KW - informational support KW - online health KW - online health communities KW - health information KW - online platform KW - pandemic KW - social support N2 - Background: Online health communities (OHCs) provide social support for ongoing health-related problems. COVID-19, the disease caused by SARS-CoV-2, has been an acute and substantial stressor worldwide. The disease and its impact, especially in the beginning phases, left many people with questions about the nature, treatment, and prevention of COVID-19. Unlike typical chronic ailments discussed on OHCs, which are more established, COVID-19, at least at the onset of the pandemic, is distinct in that it lacks a consensus of clinical diagnosis and an existing community foundation. Objective: The study aims to investigate a newly formed OHC for COVID-19 to determine the topics and types of information exchange as well as the sources of information this community referenced during the early phases of the COVID-19 pandemic in the United States. Methods: A total of 357 posts from a COVID-19 OHC on the MedHelp platform were annotated according to an open-coding process. Participants? engagement patterns, topics of posts, and sources of information were quantified. Results: Participants who offered informational support had a significantly higher percentage of responding more than once than those seeking information (P<.001). Among the information-seeking topics, symptoms and public health practice and psychological impacts were the most frequently discussed, with 26% (17/65) and 15% (10/65) of posts, respectively. Most informational support was expressed through feedback/opinion (181/220, 82.3%). Additionally, the most frequently referenced source of information was news outlets/websites, at 55% (11/20). Governmental websites were referenced less frequently. Conclusions: The trends of this community could be useful in prioritizing public health responses to address the most common questions asked by the public during crisis communication and in identifying which venue of communication is most effective in reaching a public audience during such times. UR - https://xmed.jmir.org/2021/3/e27485 UR - http://dx.doi.org/10.2196/27485 UR - http://www.ncbi.nlm.nih.gov/pubmed/34398165 ID - info:doi/10.2196/27485 ER - TY - JOUR AU - Karim, Sana AU - Hsiung, Kimberly AU - Symonds, Maria AU - Radovic, Ana PY - 2021/7/22 TI - Experience of Peer Bloggers Using a Social Media Website for Adolescents With Depression or Anxiety: Proof-of-Concept Study JO - JMIR Form Res SP - e26183 VL - 5 IS - 7 KW - adolescent KW - social media KW - blogging KW - depression KW - anxiety N2 - Background: Supporting Our Valued Adolescents (SOVA) is a moderated and anonymous social media website intervention. SOVA ambassadors are adolescents and young adults (AYA) asked to write monthly blog posts and comments on others? posts on topics surrounding mental health. Objective: This study aims to understand the feasibility and acceptability of peer blogging for a moderated mental health intervention website and explore whether bloggers?AYA who self-report symptoms of depression and anxiety?experience potential benefits. Methods: AYA aged 14 to 26 years with a self-reported history of depression or anxiety were recruited to the SOVA Peer Ambassador Program. Participants were asked to write one blog post a month and comment at least four times a month on other blog posts, for which they were compensated for up to US $15 monthly. Outcome variables measured at baseline and 3 months after intervention included website usability and feasibility, depressive symptoms, anxiety symptoms, mental health treatment history, cybercoping, personal blogging style, self-esteem, loneliness, mental health stigma, social support, and positive youth development characteristics. Open-ended questions were asked about their blogging acceptability and usability. Results: Of 66 AYA showing interest and completing onboarding, 71% (47/66) wrote at least one blog post, with an average of 3 posts per person. A sample of 51% (34/66) of participants completed a 3-month survey for the full analysis. Almost all 34 participants were satisfied with the experience of blogging (32/34, 94%) and rated the website usability as good (80.1, SD 14.9). At 3 months, self-esteem scores increased by 2.1, with a small-medium effect size (P=.01; Cohen d=0.45), and youth competence and confidence increased by 0.7 (P=.002) and 1.3 (P=.002), with medium effect sizes (Cohen d=0.62 and 0.60), respectively. Conclusions: A blogging intervention for AYA with a history of depression or anxiety was feasible with regular and active engagement and shows evidence in a one-sample design for positive changes in strength-based assets?self-esteem, competence, and confidence?which map onto resilience. UR - https://formative.jmir.org/2021/7/e26183 UR - http://dx.doi.org/10.2196/26183 UR - http://www.ncbi.nlm.nih.gov/pubmed/34292161 ID - info:doi/10.2196/26183 ER - TY - JOUR AU - Ramírez-Cifuentes, Diana AU - Freire, Ana AU - Baeza-Yates, Ricardo AU - Sanz Lamora, Nadia AU - Álvarez, Aida AU - González-Rodríguez, Alexandre AU - Lozano Rochel, Meritxell AU - Llobet Vives, Roger AU - Velazquez, Alejandro Diego AU - Gonfaus, Maria Josep AU - Gonzàlez, Jordi PY - 2021/7/20 TI - Characterization of Anorexia Nervosa on Social Media: Textual, Visual, Relational, Behavioral, and Demographical Analysis JO - J Med Internet Res SP - e25925 VL - 23 IS - 7 KW - social media KW - Twitter KW - Spanish KW - anorexia nervosa KW - eating disorders KW - user characterization N2 - Background: Eating disorders are psychological conditions characterized by unhealthy eating habits. Anorexia nervosa (AN) is defined as the belief of being overweight despite being dangerously underweight. The psychological signs involve emotional and behavioral issues. There is evidence that signs and symptoms can manifest on social media, wherein both harmful and beneficial content is shared daily. Objective: This study aims to characterize Spanish-speaking users showing anorexia signs on Twitter through the extraction and inference of behavioral, demographical, relational, and multimodal data. By using the transtheoretical model of health behavior change, we focus on characterizing and comparing users at the different stages of the model for overcoming AN, including treatment and full recovery periods. Methods: We analyzed the writings, posting patterns, social relationships, and images shared by Twitter users who underwent different stages of anorexia nervosa and compared the differences among users going through each stage of the illness and users in the control group (ie, users without AN). We also analyzed the topics of interest of their followees (ie, users followed by study participants). We used a clustering approach to distinguish users at an early phase of the illness (precontemplation) from those that recognize that their behavior is problematic (contemplation) and generated models for the detection of tweets and images related to AN. We considered two types of control users?focused control users, which are those that use terms related to anorexia, and random control users. Results: We found significant differences between users at each stage of the recovery process (P<.001) and control groups. Users with AN tweeted more frequently at night, with a median sleep time tweets ratio (STTR) of 0.05, than random control users (STTR=0.04) and focused control users (STTR=0.03). Pictures were relevant for the characterization of users. Focused and random control users were characterized by the use of text in their profile pictures. We also found a strong polarization between focused control users and users in the first stages of the disorder. There was a strong correlation among the shared interests between users with AN and their followees (?=0.96). In addition, the interests of recovered users and users in treatment were more highly correlated to those corresponding to the focused control group (?=0.87 for both) than those of AN users (?=0.67), suggesting a shift in users? interest during the recovery process. Conclusions: We mapped the signs of AN to social media context. These results support the findings of previous studies that focused on other languages and involved a deep analysis of the topics of interest of users at each phase of the disorder. The features and patterns identified provide a basis for the development of detection tools and recommender systems. UR - https://www.jmir.org/2021/7/e25925 UR - http://dx.doi.org/10.2196/25925 UR - http://www.ncbi.nlm.nih.gov/pubmed/34283033 ID - info:doi/10.2196/25925 ER - TY - JOUR AU - Andy, Anietie PY - 2021/7/20 TI - Studying How Individuals Who Express the Feeling of Loneliness in an Online Loneliness Forum Communicate in a Nonloneliness Forum: Observational Study JO - JMIR Form Res SP - e28738 VL - 5 IS - 7 KW - loneliness KW - Reddit KW - nonloneliness KW - mental health KW - eHealth KW - forum KW - online forum KW - communication KW - natural language processing KW - language KW - linguistics N2 - Background: Loneliness is a public health concern, and increasingly, individuals experiencing loneliness are seeking support on online forums, some of which focus on discussions around loneliness (loneliness forums). Some of these individuals may also seek support around loneliness on online forums not related to loneliness or well-being (nonloneliness forums). Hence, to design and implement appropriate and efficient online loneliness interventions, it is important to understand how individuals who express and seek support around loneliness on online loneliness forums communicate in nonloneliness forums; this could provide further insights into the support needs and concerns of these users. Objective: This study aims to explore how users who express the feeling of loneliness and seek support around loneliness on an online loneliness forum communicate in an online nonloneliness forum. Methods: A total of 2401 users who expressed loneliness in posts published on a loneliness forum on Reddit and had published posts in a nonloneliness forum were identified. Using latent Dirichlet allocation (a natural language processing algorithm); Linguistic Inquiry and Word Count (a psycholinguistic dictionary); and the word score?based language features valence, arousal, and dominance, the language use differences in posts published in the nonloneliness forum by these users compared to a control group of users who did not belong to any loneliness forum on Reddit were determined. Results: It was found that in posts published in the nonloneliness forum, users who expressed loneliness tend to use more words associated with the Linguistic Inquiry and Word Count categories on sadness (Cohen d=0.10) and seeking to socialize (Cohen d=0.114), and use words associated with valence (Cohen d=0.364) and dominance (Cohen d=0.117). In addition, they tend to publish posts related to latent Dirichlet allocation topics such as relationships (Cohen d=0.105) and family and friends and mental health (Cohen d=0.10). Conclusions: There are clear distinctions in language use in nonloneliness forum posts by users who express loneliness compared to a control group of users. These findings can help with the design and implementation of online interventions around loneliness. UR - https://formative.jmir.org/2021/7/e28738 UR - http://dx.doi.org/10.2196/28738 UR - http://www.ncbi.nlm.nih.gov/pubmed/34283026 ID - info:doi/10.2196/28738 ER - TY - JOUR AU - Chivers, R. Bonnie AU - Garad, M. Rhonda AU - Moran, J. Lisa AU - Lim, Siew AU - Harrison, L. Cheryce PY - 2021/7/15 TI - Support Seeking in the Postpartum Period: Content Analysis of Posts in Web-Based Parenting Discussion Groups JO - J Med Internet Res SP - e26600 VL - 23 IS - 7 KW - pregnancy KW - perinatal KW - maternal KW - postpartum KW - infant KW - social support KW - qualitative KW - health KW - online N2 - Background: The transition from pregnancy to motherhood is a major developmental phase that can be challenging for both women and their families. For new mothers, the postpartum period is recognized as a critical period for increased risk of both physical and mental health concerns. For this reason, it is imperative that women receive accurate, evidence-based information during this time. Objective: This study aims to explore the conversations of new mothers on a web-based parenting forum to investigate what topics or concerns are being discussed. Methods: A leading Australian web-based support forum for women before and after birth was used to obtain a sample of posts from the mothers of infants aged 0-12 months. Quantitative data (word frequencies and sentiment analysis) and qualitative data (post content) were extracted from discussion threads and examined to determine sentiments and theoretical storylines. Results: In total, 260 posts were sampled. Infant care was the most prominent overarching topic discussed, with feeding and sleep being the most discussed subtopics. Discussions about maternal care were much less frequent but included questions about birth recovery, breastfeeding concerns, and interconception. A pattern of behavior emerged within the posts. This pattern resembled a cycle of learning across five phases: help seeking, solution ideation, testing and skill development, consolidation, and empowerment and improved mental well-being. A dynamic interplay was observed as mothers navigated new concerns or developmental changes. Conclusions: Engagement in web-based forums to seek help and support during the postpartum period was common, with infant health and well-being being the primary concerns for new mothers during this time. The identification of a maternal learning cycle within the forum underscores the contributory role of web-based communities in maternal peer social support, information seeking, and early parenting practices. UR - https://www.jmir.org/2021/7/e26600 UR - http://dx.doi.org/10.2196/26600 UR - http://www.ncbi.nlm.nih.gov/pubmed/34264198 ID - info:doi/10.2196/26600 ER - TY - JOUR AU - Smit, Dorien AU - Vrijsen, N. Janna AU - Groeneweg, Bart AU - Vellinga-Dings, Amber AU - Peelen, Janneke AU - Spijker, Jan PY - 2021/7/12 TI - A Newly Developed Online Peer Support Community for Depression (Depression Connect): Qualitative Study JO - J Med Internet Res SP - e25917 VL - 23 IS - 7 KW - depression KW - online peer support community KW - internet support group KW - experiential knowledge KW - self-management KW - empowerment KW - qualitative research KW - patients? perspectives KW - participation style N2 - Background: Internet support groups enable users to provide peer support by exchanging knowledge about and experiences in coping with their illness. Several studies exploring the benefits of internet support groups for depression have found positive effects on recovery-oriented values, including empowerment. However, to date, little attention has been paid to user narratives. Objective: This study aims to capture the user perspective on an online peer support community for depression with a focus on the modes of user engagement and the benefits users derive from participation in the forum. Methods: In this qualitative study, we conducted 15 semistructured interviews with users of Depression Connect, a newly developed online peer support community for individuals with depression. Combining a concept-driven and a data-driven approach, we aimed to gain insight into what users value in our Depression Connect platform and whether and how the platform promotes empowerment. We performed a thematic analysis to explore the merits and demerits reported by users by using theoretical concepts widely used in internet support group research. In the subsequent data-driven analysis, we sought to understand the relationship between different styles of user engagement and the participants? experiences with the use of Depression Connect. Data analysis consisted of open, axial, and selective coding. To include as diverse perspectives as possible, we opted for purposive sampling. To verify and validate the (interim) results, we included negative cases and performed member checks. Results: We found participation in Depression Connect contributes to a sense of belonging, emotional growth, self-efficacy, and empowerment. ?Getting too caught up? was the most frequently reported negative aspect of using Depression Connect. The deployment and development of three participation styles (ie, reading, posting, and responding) affected the perceived benefits of Depression Connect use differentially, where the latter style was central to enhancing empowerment. ?Being of value to others? boosted the users? belief in their personal strength. Finally, Depression Connect was predominantly used to supplement offline support and care for depression, and it mainly served as a safe environment where members could freely reflect on their coping mechanisms for depression and exchange and practice coping strategies. Conclusions: Our findings shed new light on user engagement processes on which internet support groups rely. The online community primarily served as a virtual meeting place to practice (social) skills for deployment in the offline world. It also allowed the members to learn from each other?s knowledge and experiences and explore newly gained insights and coping skills. UR - https://www.jmir.org/2021/7/e25917 UR - http://dx.doi.org/10.2196/25917 UR - http://www.ncbi.nlm.nih.gov/pubmed/34255659 ID - info:doi/10.2196/25917 ER - TY - JOUR AU - Vornholt, Piper AU - De Choudhury, Munmun PY - 2021/7/12 TI - Understanding the Role of Social Media?Based Mental Health Support Among College Students: Survey and Semistructured Interviews JO - JMIR Ment Health SP - e24512 VL - 8 IS - 7 KW - college mental health KW - social media KW - social support KW - mobile phone N2 - Background: Mental illness is a growing concern within many college campuses. Limited access to therapy resources, along with the fear of stigma, often prevents students from seeking help. Introducing supportive interventions, coping strategies, and mitigation programs might decrease the negative effects of mental illness among college students. Objective: Many college students find social support for a variety of needs through social media platforms. With the pervasive adoption of social media sites in college populations, in this study, we examine whether and how these platforms may help meet college students? mental health needs. Methods: We first conducted a survey among 101 students, followed by semistructured interviews (n=11), of a large public university in the southeast region of the United States to understand whether, to what extent, and how students appropriate social media platforms to suit their struggle with mental health concerns. The interviews were intended to provide comprehensive information on students? attitudes and their perceived benefits and limitations of social media as platforms for mental health support. Results: Our survey revealed that a large number of participating students (71/101, 70.3%) had recently experienced some form of stress, anxiety, or other mental health challenges related to college life. Half of them (52/101, 51.5%) also reported having appropriated some social media platforms for self-disclosure or help, indicating the pervasiveness of this practice. Through our interviews, we obtained deeper insights into these initial observations. We identified specific academic, personal, and social life stressors; motivations behind social media use for mental health needs; and specific platform affordances that helped or hindered this use. Conclusions: Students recognized the benefits of social media in helping connect with peers on campus and promoting informal and candid disclosures. However, they argued against complete anonymity in platforms for mental health help and advocated the need for privacy and boundary regulation mechanisms in social media platforms supporting this use. Our findings bear implications for informing campus counseling efforts and in designing social media?based mental health support tools for college students. UR - https://mental.jmir.org/2021/7/e24512 UR - http://dx.doi.org/10.2196/24512 UR - http://www.ncbi.nlm.nih.gov/pubmed/34255701 ID - info:doi/10.2196/24512 ER - TY - JOUR AU - Valaitis, Ruta AU - Cleghorn, Laura AU - Vassilev, Ivaylo AU - Rogers, Anne AU - Ploeg, Jenny AU - Kothari, Anita AU - Risdon, Cathy AU - Gillett, James AU - Guenter, Dale AU - Dolovich, Lisa PY - 2021/7/12 TI - A Web-Based Social Network Tool (GENIE) for Supporting Self-management Among High Users of the Health Care System: Feasibility and Usability Study JO - JMIR Form Res SP - e25285 VL - 5 IS - 7 KW - web-based tool KW - usability KW - feasibility KW - self-management KW - social network KW - primary care KW - health and social services KW - linkages KW - high systems users KW - volunteers N2 - Background: Primary care providers are well positioned to foster self-management through linking patients to community-based health and social services (HSSs). This study evaluated a web-based tool?GENIE (Generating Engagement in Network Involvement)?to support the self-management of adults. GENIE empowers patients to leverage their personal social networks and increase their access to HSSs. GENIE maps patients? personal social networks, elicits preferences, and filters local HSSs from a community service directory based on patient?s interests. Trained volunteers (an extension of the primary care team) conducted home visits and conducted surveys related to life and health goals in the context of the Health TAPESTRY (Teams Advancing Patient Experience: Strengthening Quality) program, in which the GENIE tool was implemented. GENIE reports were uploaded to an electronic medical record for care planning by the team. Objective: This study aims to explore patients?, volunteers?, and clinicians? perceptions of the feasibility, usability, and perceived outcomes of GENIE?a tool for community-dwelling adults who are high users of the health care system. Methods: This study involved 2 primary care clinician focus groups and 1 clinician interview (n=15), 1 volunteer focus group (n=3), patient telephone interviews (n=8), field observations that captured goal-action sequences to complete GENIE, and GENIE utilization statistics. The patients were enrolled in a primary care program?Health TAPESTRY?and Ontario?s Health Links Program, which coordinates care for the highest users of the health care system. NVivo 11 (QSR International) was used to support qualitative data analyses related to feasibility and perceived outcomes, and descriptive statistics were used for quantitative data. Results: Most participants reported positive overall perceptions of GENIE. However, feasibility testing showed that participants had a partial understanding of the tool; volunteer facilitation was critical to support the implementation of GENIE; clinicians perceived their navigation ability as superior to that of GENIE supported by volunteers; and tool completion took 39 minutes, which made the home visit too long for some. Usability challenges included difficulties completing some sections of the tool related to medical terminology and unclear instructions, limitations in the quality and quantity of HSSs results, and minor technological challenges. Almost all patients identified a community program or activity of interest. Half of the patients (4/8, 50%) followed up on HSSs and added new members to their network, whereas 1 participant lost a member. Clinicians? strengthened their understanding of patients? personal social networks and needs, and patients felt less social isolation. Conclusions: This study demonstrated the potential of GENIE, when supported by volunteers, to expand patients? social networks and link them to relevant HSSs. Volunteers require training to implement GENIE for self-management support, which may help overcome the time limitations faced by primary care clinicians. Refining the filtering capability of GENIE to address adults? needs may improve primary care providers? confidence in using such tools. UR - https://formative.jmir.org/2021/7/e25285 UR - http://dx.doi.org/10.2196/25285 UR - http://www.ncbi.nlm.nih.gov/pubmed/34255654 ID - info:doi/10.2196/25285 ER - TY - JOUR AU - Sukunesan, Suku AU - Huynh, Minh AU - Sharp, Gemma PY - 2021/7/9 TI - Examining the Pro-Eating Disorders Community on Twitter Via the Hashtag #proana: Statistical Modeling Approach JO - JMIR Ment Health SP - e24340 VL - 8 IS - 7 KW - Twitter KW - infodemiology KW - eating disorders KW - proana KW - thinspo KW - hashtags KW - transient KW - cybersectarianism N2 - Background: There is increasing concern around communities that promote eating disorders (Pro-ED) on social media sites through messages and images that encourage dangerous weight control behaviors. These communities share group identity formed through interactions between members and can involve the exchange of ?tips,? restrictive dieting plans, extreme exercise plans, and motivating imagery of thin bodies. Unlike Instagram, Facebook, or Tumblr, the absence of adequate policy to moderate Pro-ED content on Twitter presents a unique space for the Pro-ED community to freely communicate. While recent research has identified terms, themes, and common lexicon used within the Pro-ED online community, very few have been longitudinal. It is important to focus upon the engagement of Pro-ED online communities over time to further understand how members interact and stay connected, which is currently lacking. Objective: The purpose of this study was to explore beyond the common messages of Pro-ED on Twitter to understand how Pro-ED communities get traction over time by using the hashtag considered to symbolize the Pro-ED movement, #proana. Our focus was to collect longitudinal data to gain a further understanding of the engagement of Pro-ED communities on Twitter. Methods: Descriptive statistics were used to identify the preferred tweeting style of Twitter users (either as mentioning another user in a tweet or without) as well as their most frequently used hashtag, in addition to #proana. A series of Mann Whitney U tests were then conducted to compare preferred posting style across number of followed, followers, tweets, and favorites. This was followed by linear models using a forward step-wise approach that were applied for Pro-ED Twitter users to examine the factors associated with their number of followers. Results: This study reviewed 11,620 Pro-ED Twitter accounts that posted using the hashtag #proana between September 2015 and July 2018. These profiles then underwent a 2-step screening of inclusion and exclusion criteria to reach the final sample of 967 profiles. Over 90% (10,484/11,620) of the profiles were found to have less than 6 tweets within the 34-month period. Most of the users were identified as preferring a mentioning style of tweeting (718/967, 74.3%) over not mentioning (248/967, 25.7%). Further, #proana and #thinspo were used interchangeably to propagate shared themes, and there was a reciprocal effect between followers and the followed. Conclusions: Our analysis showed that the number of accounts followed and number of Pro-ED tweets posted were significant predictors for the number of followers a user has, compared to likes. Our results could potentially be useful to social media platforms to understand which features could help or otherwise curtail the spread of ED messages and activity. Our findings also show that Pro-ED communities are transient in nature, engaging in superficial discussion threads but resilient, emulating cybersectarian behavior. UR - https://mental.jmir.org/2021/7/e24340 UR - http://dx.doi.org/10.2196/24340 UR - http://www.ncbi.nlm.nih.gov/pubmed/34255707 ID - info:doi/10.2196/24340 ER - TY - JOUR AU - Feldhege, Johannes AU - Moessner, Markus AU - Wolf, Markus AU - Bauer, Stephanie PY - 2021/7/8 TI - Changes in Language Style and Topics in an Online Eating Disorder Community at the Beginning of the COVID-19 Pandemic: Observational Study JO - J Med Internet Res SP - e28346 VL - 23 IS - 7 KW - COVID-19 KW - eating disorders KW - online eating disorder community KW - language KW - mental health KW - social media KW - LIWC KW - Linguistic Inquiry and Word Count KW - Reddit KW - topic modeling N2 - Background: COVID-19 has affected individuals with lived experience of eating disorders (EDs), with many reporting higher psychological distress, higher prevalence of ED symptoms, and compensatory behaviors. The COVID-19 pandemic and the health and safety measures taken to contain its spread also disrupted routines and reduced access to familiar coping mechanisms, social support networks, and health care services. Social media and the ED communities on social media platforms have been an important source of support for individuals with EDs in the past. So far, it is unknown how discussions in online ED communities changed as offline support networks were disrupted and people spent more time at home in the first months of the COVID-19 pandemic. Objective: The aim of this study is to identify changes in language content and style in an online ED community during the initial onset of the COVID-19 pandemic. Methods: We extracted posts and their comments from the ED community on the social media website Reddit and concatenated them to comment threads. To analyze these threads, we applied top-down and bottom-up language analysis methods based on topic modeling with latent Dirichlet allocation and 13 indicators from the Linguistic Inquiry and Word Count program, respectively. Threads were split into prepandemic (before March 11, 2020) and midpandemic (after March 11, 2020) groups. Standardized mean differences were calculated to estimate change between pre- and midpandemic threads. Results: A total of 17,715 threads (n=8772, 49.5% prepandemic threads; n=8943, 50.5% midpandemic threads) were extracted from the ED community and analyzed. The final topic model contained 21 topics. CIs excluding zero were found for standardized mean differences of 15 topics and 9 Linguistic Inquiry and Word Count categories covering themes such as ED symptoms, mental health, treatment for EDs, cognitive processing, social life, and emotions. Conclusions: Although we observed a reduction in discussions about ED symptoms, an increase in mental health and treatment-related topics was observed at the same time. This points to a change in the focus of the ED community from promoting potentially harmful weight loss methods to bringing attention to mental health and treatments for EDs. These results together with heightened cognitive processing, increased social references, and reduced inhibition of negative emotions detected in discussions indicate a shift in the ED community toward a pro-recovery orientation. UR - https://www.jmir.org/2021/7/e28346 UR - http://dx.doi.org/10.2196/28346 UR - http://www.ncbi.nlm.nih.gov/pubmed/34101612 ID - info:doi/10.2196/28346 ER - TY - JOUR AU - Grifell, Marc AU - Mir Fuster, Guillem AU - Ventura Vilamala, Mireia AU - Galindo Guarín, Liliana AU - Carbón Mallol, Xoán AU - Hart, L. Carl AU - Pérez Sola, Víctor AU - Colom Victoriano, Francesc PY - 2021/7/2 TI - Self-reported Subjective Effects of Analytically Confirmed New Psychoactive Substances Consumed by e-Psychonauts: Protocol for a Longitudinal Study Using a New Internet-Based Methodology JO - JMIR Res Protoc SP - e24433 VL - 10 IS - 7 KW - psychotropic KW - psychoactive KW - psychonautic KW - longitudinal KW - observational KW - pharmacology KW - psychopharmacology KW - subjective effects KW - sentinel KW - mental health KW - public health KW - internet KW - eHealth KW - cathinones KW - drugs of abuse KW - psychedelics KW - mobile phone KW - smart phone KW - online recruitment KW - online forums N2 - Background: During the last few years, the continuous emergence of new psychoactive substances (NPS) has become an important public health challenge. The use of NPS has been rising in two different ways: buying and consuming NPS knowingly and the presence of NPS in traditional drugs as adulterants. The rise of NPS use is increasing the number of different substances in the market to an extent impossible to study with current scientific methodologies. This has caused a remarkable absence of necessary information about newer drug effects on people who use drugs, mental health professionals, and policy makers. Current scientific methodologies have failed to provide enough data in the timeframe when critical decisions must be made, being not only too slow but also too square. Last but not least, they dramatically lack the high resolution of phenomenological details. Objective: This study aims to characterize a population of e-psychonauts and the subjective effects of the NPS they used during the study period using a new, internet-based, fast, and inexpensive methodology. This will allow bridging an evidence gap between online surveys, which do not provide substance confirmation, and clinical trials, which are too slow and expensive to keep up with the new substances appearing every week. Methods: To cover this purpose, we designed a highly personalized, observational longitudinal study methodology. Participants will be recruited from online communities of people who use NPS, and they will be followed online by means of a continuous objective and qualitative evaluation lasting for at least 1 year. In addition, participants will send samples of the substances they intend to use during that period, so they can be analyzed and matched with the effects they report on the questionnaires. Results: The research protocol was approved by the Institutional Review Board of the Hospital del Mar Research Institute on December 11, 2018. Data collection started in August 2019 and was still ongoing when the protocol was submitted (September 2020). The first data collection period of the study ended in October 2020. Data analysis began in November 2020, and it is still ongoing. The authors expect to submit the first results for publication by the end of 2021. A preliminary analysis was conducted when the manuscript was submitted and was reviewed after it was accepted in February 2021. Conclusions: It is possible to conduct an institutional review board?approved study using this new methodology and collect the expected data. However, the meaning and usefulness of these data are still unknown. International Registered Report Identifier (IRRID): DERR1-10.2196/24433 UR - https://www.researchprotocols.org/2021/7/e24433 UR - http://dx.doi.org/10.2196/24433 UR - http://www.ncbi.nlm.nih.gov/pubmed/34255715 ID - info:doi/10.2196/24433 ER - TY - JOUR AU - Milne-Ives, Madison AU - Swancutt, Dawn AU - Burns, Lorna AU - Pinkney, Jonathan AU - Tarrant, Mark AU - Calitri, Raff AU - Chatterjee, Arunangsu AU - Meinert, Edward PY - 2021/6/30 TI - The Effectiveness and Usability of Online, Group-Based Interventions for People With Severe Obesity: Protocol for a Systematic Review JO - JMIR Res Protoc SP - e26619 VL - 10 IS - 6 KW - internet-based interventions KW - telemedicine KW - group-based interventions KW - obesity KW - severe obesity KW - obesity management KW - weight loss KW - weight reduction programs KW - diet therapy KW - exercise KW - systematic review KW - weight management N2 - Background: Globally, obesity is a growing crisis. Despite obesity being preventable, over a quarter of the UK adult population is currently considered clinically obese (typically body mass index ?35 kg/m2). Access to treatment for people with severe obesity is limited by long wait times and local availability. Online and group-based interventions provide means of increasing the accessibility of obesity prevention and treatment services. However, there has been no prior review of the effectiveness of group-based interventions delivered online for people with severe obesity. Objective: The purpose of this systematic review protocol is to provide an evaluation of the effectiveness and usability of different types of online, group-based interventions for people with severe obesity. Methods: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P) and the Population, Intervention, Comparator, Outcome, and Study (PICOS) frameworks were used to structure this review. The review will systematically search 7 databases: MEDLINE, Embase, the Cumulative Index of Nursing and Allied Health Literature, APA PsycNet, Web of Science, CENTRAL, and the ProQuest Dissertations and Theses databases. Two authors (MM-I and LB) will independently screen the titles and abstracts of identified articles, select studies for inclusion based on the eligibility criteria, and extract data into a standardized form. Any disagreements will be discussed and resolved by a third reviewer (EM) if necessary. Risk of bias will be assessed using the Cochrane Collaboration Risk of Bias 2 tool and a descriptive analysis will be used to evaluate effectiveness and usability. Results: The systematic review has not yet been started. It is expected to be completed and submitted for publication by December 2021. Conclusions: This systematic review will summarize the effectiveness and usability of online, group-based interventions for people with obesity. It will identify the types of online delivery that have the strongest support to help inform the development of more useful and engaging interventions for people with severe obesity. Trial Registration: National Institute for Health Research, PROSPERO CRD42021227101; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021227101 International Registered Report Identifier (IRRID): PRR1-10.2196/26619 UR - https://www.researchprotocols.org/2021/6/e26619 UR - http://dx.doi.org/10.2196/26619 UR - http://www.ncbi.nlm.nih.gov/pubmed/34255710 ID - info:doi/10.2196/26619 ER - TY - JOUR AU - Mazel, Shayna AU - Zisman-Ilani, Yaara AU - Hennig, Shannon AU - Garnick, Deborah AU - Nicholson, Joanne PY - 2021/6/24 TI - Virtual Engagement in a Social Media Community of Mothers With Substance Use Disorders: Content Analysis JO - JMIR Form Res SP - e24353 VL - 5 IS - 6 KW - virtual engagement KW - virtual community participation KW - social media KW - mental health KW - opioids KW - substance use N2 - Background: Co-occurring substance use disorder is common among pregnant and parenting women with mental illness, but their engagement with and utilization of relevant services and treatment is low. Social media has the potential to convey benefits and facilitate engagement among this target group. Objective: This study aimed to explore the reach and engagement of specific social media posts among pregnant women and mothers with substance use disorders. Methods: Eighteen posts providing content related to substance use (cannabis, opioids, or alcohol), varying in type of content (informational or experiential) and target (policy-, practice-, or perception-related), were posted in a closed Facebook community page comprising over 33,000 pregnant women and mothers between May 2019 and October 2019. Results: The overall level of reach of these Facebook posts ranged from 453 to 3045 community members. Engagement levels, measured via the number of likes, comments, or posts shared, varied based on the type of post content (ie, informational or experiential). Conclusions: Participation in a virtual community via social media platforms can facilitate engagement among pregnant women and mothers with mental illness by communicating relevant information about substance use, as well as potentially promoting awareness of, access to, and engagement with treatment services. UR - https://formative.jmir.org/2021/6/e24353/ UR - http://dx.doi.org/10.2196/24353 UR - http://www.ncbi.nlm.nih.gov/pubmed/34184993 ID - info:doi/10.2196/24353 ER - TY - JOUR AU - Kim, Jina AU - Lee, Daeun AU - Park, Eunil PY - 2021/6/17 TI - Authors? Reply to: Bibliometric Studies and the Discipline of Social Media Mental Health Research. Comment on ?Machine Learning for Mental Health in Social Media: Bibliometric Study? JO - J Med Internet Res SP - e29549 VL - 23 IS - 6 KW - bibliometric analysis KW - machine learning KW - mental health KW - social media KW - bibliometrics UR - https://www.jmir.org/2021/6/e29549 UR - http://dx.doi.org/10.2196/29549 UR - http://www.ncbi.nlm.nih.gov/pubmed/34137721 ID - info:doi/10.2196/29549 ER - TY - JOUR AU - Resnik, Philip AU - De Choudhury, Munmun AU - Musacchio Schafer, Katherine AU - Coppersmith, Glen PY - 2021/6/17 TI - Bibliometric Studies and the Discipline of Social Media Mental Health Research. Comment on ?Machine Learning for Mental Health in Social Media: Bibliometric Study? JO - J Med Internet Res SP - e28990 VL - 23 IS - 6 KW - bibliometric analysis KW - machine learning KW - mental health KW - social media KW - bibliometrics UR - https://www.jmir.org/2021/6/e28990 UR - http://dx.doi.org/10.2196/28990 UR - http://www.ncbi.nlm.nih.gov/pubmed/34137722 ID - info:doi/10.2196/28990 ER - TY - JOUR AU - Zhong, Bu AU - Liu, Qian PY - 2021/6/9 TI - Medical Insights from Posts About Irritable Bowel Syndrome by Adolescent Patients and Their Parents: Topic Modeling and Social Network Analysis JO - J Med Internet Res SP - e26867 VL - 23 IS - 6 KW - irritable bowel syndrome KW - health care forum KW - adolescent KW - parents KW - topic modeling KW - social network analysis N2 - Background: Adolescents with irritable bowel syndrome (IBS) are increasingly seeking and sharing information about their symptoms in web-based health care forums. Their posts and those from their parents contain critical insights that can be used by patients, physicians, and caregivers to manage IBS symptoms. Objective: The aim of this study is to examine the posts from adolescent patients and their parents in a health forum, IBS Group, to better understand the key challenges, concerns, and issues of interest to young patients with IBS and their caregivers. Methods: Using topic modeling and social network analysis, in this study, we analyzed all the messages (over 750 topics and 3400 replies) posted on the IBS Group forum from 2010-2019 by adolescents with IBS aged 13-17 years and parents having children with IBS. We first detected 6 major topics in the posts by adolescent patients and parents on teenagers? IBS symptoms and the interaction between the topics. Social network analysis was then performed to gain insights into the nature of web-based interaction patterns among patients and caregivers. Results: Using the Latent Dirichlet Allocation algorithm and a latent Dirichlet allocation visualization tool, this study revealed 6 leading topics of concern in adolescents with IBS: school life, treatment or diet, symptoms, boys? ties to doctors, social or friend issues, and girls? ties to doctors. The top 6 topics in the parents? discussions were school life, girls? issues, boys? issues, diet choice, symptoms, and stress. The analyses show that the adolescent patients themselves are most concerned about the effect of IBS on their everyday activities and social lives. For parents having daughters with IBS, their top concerns were related to the girls? school performance and how much help they received at school. For their sons, the parents were more concerned about the pain and suffering that their sons had to endure. Both parents and adolescents gained social support from the web-based platform. Topic modeling shows that IBS affects teenagers the most in the areas of pain and school life. Furthermore, the issues raised by parents suggest that girls are bothered more by school performance over pain, whereas boys show exactly the opposite: pain is of greater concern than school performance. Conclusions: This study represents the first attempt to leverage both machine learning approaches and social network analysis to identify top IBS concerns from the perspectives of adolescent patients and caregivers in the same health forum. Young patients with IBS must face the challenges of social influences and anxiety associated with this health disorder in addition to physical pain and other symptoms. Boys and girls are affected differently by pain and school performance and view the IBS impacts differently from the parents. UR - https://www.jmir.org/2021/6/e26867 UR - http://dx.doi.org/10.2196/26867 UR - http://www.ncbi.nlm.nih.gov/pubmed/34106078 ID - info:doi/10.2196/26867 ER - TY - JOUR AU - Braune, Katarina AU - Gajewska, Anna Katarzyna AU - Thieffry, Axel AU - Lewis, Michelle Dana AU - Froment, Timothée AU - O'Donnell, Shane AU - Speight, Jane AU - Hendrieckx, Christel AU - Schipp, Jasmine AU - Skinner, Timothy AU - Langstrup, Henriette AU - Tappe, Adrian AU - Raile, Klemens AU - Cleal, Bryan PY - 2021/6/7 TI - Why #WeAreNotWaiting?Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey JO - J Med Internet Res SP - e25409 VL - 23 IS - 6 KW - diabetes KW - artificial pancreas KW - automated insulin delivery KW - open-source KW - patient-led KW - user-led KW - peer support KW - online communities KW - diabetes technology KW - digital health KW - mobile health KW - medical device regulation KW - motivation KW - sleep quality KW - do-it-yourself N2 - Background: Automated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyperglycemia and hypoglycemia but are not universally available, accessible, or affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular. Objective: This study aims to investigate the motivations for which people with diabetes (types 1, 2, and other) or their caregivers decide to build and use a personalized open-source AID. Methods: A cross-sectional web-based survey was conducted to assess personal motivations and associated self-reported clinical outcomes. Results: Of 897 participants from 35 countries, 80.5% (722) were adults with diabetes and 19.5% (175) were caregivers of children with diabetes. Primary motivations to commence open-source AID included improving glycemic outcomes (476/509 adults, 93.5%, and 95/100 caregivers, 95%), reducing acute (443/508 adults, 87.2%, and 96/100 caregivers, 96%) and long-term (421/505 adults, 83.3%, and 91/100 caregivers, 91%) complication risk, interacting less frequently with diabetes technology (413/509 adults, 81.1%; 86/100 caregivers, 86%), improving their or child?s sleep quality (364/508 adults, 71.6%, and 80/100 caregivers, 80%), increasing their or child?s life expectancy (381/507 adults, 75.1%, and 84/100 caregivers, 84%), lack of commercially available AID systems (359/507 adults, 70.8%, and 79/99 caregivers, 80%), and unachieved therapy goals with available therapy options (348/509 adults, 68.4%, and 69/100 caregivers, 69%). Improving their own sleep quality was an almost universal motivator for caregivers (94/100, 94%). Significant improvements, independent of age and gender, were observed in self-reported glycated hemoglobin (HbA1c), 7.14% (SD 1.13%; 54.5 mmol/mol, SD 12.4) to 6.24% (SD 0.64%; 44.7 mmol/mol, SD 7.0; P<.001), and time in range (62.96%, SD 16.18%, to 80.34%, SD 9.41%; P<.001). Conclusions: These results highlight the unmet needs of people with diabetes, provide new insights into the evolving phenomenon of open-source AID technology, and indicate improved clinical outcomes. This study may inform health care professionals and policy makers about the opportunities provided by open-source AID systems. International Registered Report Identifier (IRRID): RR2-10.2196/15368 UR - https://www.jmir.org/2021/6/e25409 UR - http://dx.doi.org/10.2196/25409 UR - http://www.ncbi.nlm.nih.gov/pubmed/34096874 ID - info:doi/10.2196/25409 ER - TY - JOUR AU - Hendrie, A. Gilly AU - Baird, L. Danielle AU - Brindal, Emily AU - Williams, Gemma AU - Brand-Miller, Jennie AU - Muhlhausler, Beverly PY - 2021/6/7 TI - Weight Loss and Usage of an Online Commercial Weight Loss Program (the CSIRO Total Wellbeing Diet Online) Delivered in an Everyday Context: Five-Year Evaluation in a Community Cohort JO - J Med Internet Res SP - e20981 VL - 23 IS - 6 KW - obesity KW - obesity management KW - weight loss KW - internet-based intervention N2 - Background: Obesity is a global public health challenge, and there is a need for more evidence-based self-management programs that support longer-term, sustained weight loss. Objective: This study used data from the Commonwealth Scientific and Industrial Research Organisation (CSIRO) Total Wellbeing Diet Online program to determine the reach and weight loss results over its first 5 years. Methods: Participants were adults who joined the commercial weight loss program of their own volition between October 2014 and September 2019 (N=61,164). Information collected included year of birth, sex, height, weight, and usage data (eg, entries into the food diary, views of the menu, and program content). Weight loss and percentage of starting body weight lost were calculated. Members were divided into 2 groups for analysis: ?stayers? were members who signed up for at least 12 weeks of the program and recorded a weight entry at baseline and at the end of the program, while ?starters? began the program but did not record a weight after 12 weeks. Descriptive statistics and multiple linear regression were used to describe weight loss and determine the member and program characteristics associated with weight loss. Results: Data were available from 59,686 members for analysis. Members were predominately female (48,979/59,686, 82.06%) with an average age of 50 years (SD 12.6). The average starting weight was 90.2 kg (SD 19.7), and over half of all members (34,195/59,688, 57.29%) were classified as obese. At week 12, 94.56% (56,438/59,686) of the members had a paid program membership, which decreased to 41.48% (24,756/59,686) at 24 weeks. At week 12, 52.03% (29,115/55,958) of the remaining members were actively using the platform, and by week 24, 26.59% (14,880/55,958) were using the platform. The average weight loss for all members was 2.8 kg or 3.1% of their starting body weight. Stayers lost 4.9 kg (5.3% of starting body weight) compared to starters, who lost 1.6 kg (1.7% of starting body weight). Almost half (11,082/22,658, 48.91%) the members who stayed on the program lost 5% or more of their starting body weight, and 15.48% (3507/22,658) achieved a weight loss of 10% or more. Of the members who were classified as class 1 obese when they joined the program, 41.39% (3065/7405) who stayed on the program were no longer classified as obese at the end, and across all categories of obesity, 24% (3180/13,319) were no longer classified as obese at the end of the program. Based on multiple linear regression, platform usage was the strongest predictor of weight loss (?=.263; P<.001), with higher usage associated with greater weight loss. Conclusions: This comprehensive evaluation of a commercial, online weight loss program showed that it was effective for weight loss, particularly for members who finished the program and were active in using the platform and tools provided. If the results demonstrated here can be achieved at an even greater scale, the potential social and economic benefits will be extremely significant. UR - https://www.jmir.org/2021/6/e20981 UR - http://dx.doi.org/10.2196/20981 UR - http://www.ncbi.nlm.nih.gov/pubmed/34096869 ID - info:doi/10.2196/20981 ER - TY - JOUR AU - Chen, Qin AU - Jin, Jiahua AU - Zhang, Tingting AU - Yan, Xiangbin PY - 2021/6/3 TI - The Effects of Log-in Behaviors and Web Reviews on Patient Consultation in Online Health Communities: Longitudinal Study JO - J Med Internet Res SP - e25367 VL - 23 IS - 6 KW - online health communities KW - digital health KW - patient consultation KW - log-in behavior KW - web reviews KW - offline status N2 - Background: With the rapid development of information technology and web-based communities, a growing number of patients choose to consult physicians in online health communities (OHCs) for information and treatment. Although extant research has primarily discussed factors that influence the consulting choices of OHC patients, there is still a lack of research on the effects of log-in behaviors and web reviews on patient consultation. Objective: This study aims to explore the impact of physicians? log-in behavior and web reviews on patient consultation. Methods: We conducted a longitudinal study to examine the effects of physicians? log-in behaviors and web reviews on patient consultation by analyzing short-panel data from 911 physicians over five periods in a Chinese OHC. Results: The results showed that the physician?s log-in behavior had a positive effect on patient consultation. The maximum number of days with no log-ins for a physician should be 20. The two web signals (log-in behavior and web reviews) had no complementary relationship. Moreover, the offline signal (ie, offline status) has different moderating effects on the two web signals, positively moderating the relationship between web reviews and patient consultation. Conclusions: Our study contributes to the eHealth literature and advances the understanding of physicians? web-based behaviors. This study also provides practical implications, showing that physicians? log-in behavior alone can affect patient consultation rather than complementing web reviews. UR - https://www.jmir.org/2021/6/e25367 UR - http://dx.doi.org/10.2196/25367 UR - http://www.ncbi.nlm.nih.gov/pubmed/34081008 ID - info:doi/10.2196/25367 ER - TY - JOUR AU - Chung, Alicia AU - Vieira, Dorice AU - Donley, Tiffany AU - Tan, Nicholas AU - Jean-Louis, Girardin AU - Kiely Gouley, Kathleen AU - Seixas, Azizi PY - 2021/6/3 TI - Adolescent Peer Influence on Eating Behaviors via Social Media: Scoping Review JO - J Med Internet Res SP - e19697 VL - 23 IS - 6 KW - social media KW - eating behaviors KW - adolescent health N2 - Background: The influence of social media among adolescent peer groups can be a powerful change agent. Objective: Our scoping review aimed to elucidate the ways in which social media use among adolescent peers influences eating behaviors. Methods: A scoping review of the literature of articles published from journal inception to 2019 was performed by searching PubMed (ie, MEDLINE), Embase, CINAHL, PsycINFO, Web of Science, and other databases. The review was conducted in three steps: (1) identification of the research question and clarification of criteria using the population, intervention, comparison, and outcome (PICO) framework; (2) selection of articles from the literature using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines; and (3) charting and summarizing information from selected articles. PubMed?s Medical Subject Headings (MeSH) and Embase?s Emtree subject headings were reviewed along with specific keywords to construct a comprehensive search strategy. Subject headings and keywords were based on adolescent age groups, social media platforms, and eating behaviors. After screening 1387 peer-reviewed articles, 37 articles were assessed for eligibility. Participant age, gender, study location, social media channels utilized, user volume, and content themes related to findings were extracted from the articles. Results: Six articles met the final inclusion criteria. A final sample size of 1225 adolescents (aged 10 to 19 years) from the United States, the United Kingdom, Sweden, Norway, Denmark, Portugal, Brazil, and Australia were included in controlled and qualitative studies. Instagram and Facebook were among the most popular social media platforms that influenced healthful eating behaviors (ie, fruit and vegetable intake) as well as unhealthful eating behaviors related to fast food advertising. Online forums served as accessible channels for eating disorder relapse prevention among youth. Social media influence converged around four central themes: (1) visual appeal, (2) content dissemination, (3) socialized digital connections, and (4) adolescent marketer influencers. Conclusions: Adolescent peer influence in social media environments spans the spectrum of healthy eating (ie, pathological) to eating disorders (ie, nonpathological). Strategic network-driven approaches should be considered for engaging adolescents in the promotion of positive dietary behaviors. UR - https://www.jmir.org/2021/6/e19697 UR - http://dx.doi.org/10.2196/19697 UR - http://www.ncbi.nlm.nih.gov/pubmed/34081018 ID - info:doi/10.2196/19697 ER - TY - JOUR AU - Kochan, Andrew AU - Ong, Shaun AU - Guler, Sabina AU - Johannson, A. Kerri AU - Ryerson, J. Christopher AU - Goobie, C. Gillian PY - 2021/5/31 TI - Social Media Content of Idiopathic Pulmonary Fibrosis Groups and Pages on Facebook: Cross-sectional Analysis JO - JMIR Public Health Surveill SP - e24199 VL - 7 IS - 5 KW - interstitial lung disease KW - idiopathic pulmonary fibrosis KW - patient education KW - social media KW - internet N2 - Background: Patients use Facebook as a resource for medical information. We analyzed posts on idiopathic pulmonary fibrosis (IPF)-related Facebook groups and pages for the presence of guideline content, user engagement, and usefulness. Objective: The objective of this study was to describe and analyze posts from Facebook groups and pages that primarily focus on IPF-related content. Methods: Cross-sectional analysis was performed on a single date, identifying Facebook groups and pages resulting from separately searching ?IPF? and ?idiopathic pulmonary fibrosis.? For inclusion, groups and pages needed to meet either search term and be in English, publicly available, and relevant to IPF. Every 10th post was assessed for general characteristics, source, focus, and user engagement metrics. Posts were analyzed for presence of IPF guideline content, useful scientific information (eg, scientific publications), useful support information (eg, information about support groups), and potentially harmful information. Results: Eligibility criteria were met by 12 groups and 27 pages, leading to analysis of 523 posts. Of these, 42% contained guideline content, 24% provided useful support, 20% provided useful scientific information, and 5% contained potentially harmful information. The most common post source was nonmedical users (85%). Posts most frequently focused on IPF-related news (29%). Posts containing any guideline content had fewer likes or comments and a higher likelihood of containing potentially harmful content. Posts containing useful supportive information had more likes, shares, and comments. Conclusions: Facebook contains useful information about IPF, but posts with misinformation and less guideline content have higher user engagement, making them more visible. Identifying ways to help patients with IPF discriminate between useful and harmful information on Facebook and other social media platforms is an important task for health care professionals. UR - https://publichealth.jmir.org/2021/5/e24199 UR - http://dx.doi.org/10.2196/24199 UR - http://www.ncbi.nlm.nih.gov/pubmed/34057425 ID - info:doi/10.2196/24199 ER - TY - JOUR AU - Temmesen, Gry Camilla AU - Nielsen, Svarre Henriette AU - Andersen, Myglegård Heidi Lene AU - Birch Petersen, Kathrine AU - Clemensen, Jane PY - 2021/5/31 TI - Using Social Media for Qualitative Health Research in Danish Women of Reproductive Age: Online Focus Group Study on Facebook JO - JMIR Form Res SP - e24108 VL - 5 IS - 5 KW - internet KW - social media KW - Facebook KW - online focus groups KW - women KW - reproduction KW - reproductive age KW - motherhood KW - participatory design N2 - Background: Social media platforms provide new possibilities within health research. With Facebook being the largest social network in the world, it constitutes a potential platform for recruitment and data collection from women of reproductive age. Women in Denmark and in other Western countries postpone motherhood and risk infertility due to their advanced age when they try to conceive. To date, no study has explored Danish women?s reflections on the timing of motherhood within a social media setting. Objective: The aim of this study was to explore the challenges and opportunities of using Facebook as a platform for qualitative health research in Danish women of reproductive age. Methods: This study was a qualitative study based on 3 online focus groups on Facebook with 26 Danish women of reproductive age discussing the timing of motherhood in January 2020. Results: Conducting online focus groups on Facebook was successful in this study as the web-based approach was found suitable for developing qualitative data with women of reproductive age and made recruitment easy and free of charge. All participants found participating in an online focus group to be a positive experience. More than half of the women participating in the online focus groups found it advantageous to meet on Facebook instead of meeting face-to-face. Conclusions: Conducting online focus groups on Facebook is a suitable method to access qualitative data from women of reproductive age. Participants were positive toward being a part of an online focus group. Online focus groups on social media have the potential to give women of reproductive age a voice in the debate of motherhood. UR - https://formative.jmir.org/2021/5/e24108 UR - http://dx.doi.org/10.2196/24108 UR - http://www.ncbi.nlm.nih.gov/pubmed/34057418 ID - info:doi/10.2196/24108 ER - TY - JOUR AU - Charles, Ashleigh AU - Nixdorf, Rebecca AU - Ibrahim, Nashwa AU - Meir, Gai Lion AU - Mpango, S. Richard AU - Ngakongwa, Fileuka AU - Nudds, Hannah AU - Pathare, Soumitra AU - Ryan, Grace AU - Repper, Julie AU - Wharrad, Heather AU - Wolf, Philip AU - Slade, Mike AU - Mahlke, Candelaria PY - 2021/5/27 TI - Initial Training for Mental Health Peer Support Workers: Systematized Review and International Delphi Consultation JO - JMIR Ment Health SP - e25528 VL - 8 IS - 5 KW - peer support work KW - peer support worker training KW - Delphi consultation KW - mental health KW - mobile phone N2 - Background: Initial training is essential for the mental health peer support worker (PSW) role. Training needs to incorporate recent advances in digital peer support and the increase of peer support work roles internationally. There is a lack of evidence on training topics that are important for initial peer support work training and on which training topics can be provided on the internet. Objective: The objective of this study is to establish consensus levels about the content of initial training for mental health PSWs and the extent to which each identified topic can be delivered over the internet. Methods: A systematized review was conducted to identify a preliminary list of training topics from existing training manuals. Three rounds of Delphi consultation were then conducted to establish the importance and web-based deliverability of each topic. In round 1, participants were asked to rate the training topics for importance, and the topic list was refined. In rounds 2 and 3, participants were asked to rate each topic for importance and the extent to which they could be delivered over the internet. Results: The systematized review identified 32 training manuals from 14 countries: Argentina, Australia, Brazil, Canada, Chile, Germany, Ireland, the Netherlands, Norway, Scotland, Sweden, Uganda, the United Kingdom, and the United States. These were synthesized to develop a preliminary list of 18 topics. The Delphi consultation involved 110 participants (49 PSWs, 36 managers, and 25 researchers) from 21 countries (14 high-income, 5 middle-income, and 2 low-income countries). After the Delphi consultation (round 1: n=110; round 2: n=89; and round 3: n=82), 20 training topics (18 universal and 2 context-specific) were identified. There was a strong consensus about the importance of five topics: lived experience as an asset, ethics, PSW well-being, and PSW role focus on recovery and communication, with a moderate consensus for all other topics apart from the knowledge of mental health. There was no clear pattern of differences among PSW, manager, and researcher ratings of importance or between responses from participants in countries with different resource levels. All training topics were identified with a strong consensus as being deliverable through blended web-based and face-to-face training (rating 1) or fully deliverable on the internet with moderation (rating 2), with none identified as only deliverable through face-to-face teaching (rating 0) or deliverable fully on the web as a stand-alone course without moderation (rating 3). Conclusions: The 20 training topics identified can be recommended for inclusion in the curriculum of initial training programs for PSWs. Further research on web-based delivery of initial training is needed to understand the role of web-based moderation and whether web-based training better prepares recipients to deliver web-based peer support. UR - https://mental.jmir.org/2021/5/e25528 UR - http://dx.doi.org/10.2196/25528 UR - http://www.ncbi.nlm.nih.gov/pubmed/34042603 ID - info:doi/10.2196/25528 ER - TY - JOUR AU - Slade, Mike AU - Rennick-Egglestone, Stefan AU - Llewellyn-Beardsley, Joy AU - Yeo, Caroline AU - Roe, James AU - Bailey, Sylvia AU - Smith, Andrew Roger AU - Booth, Susie AU - Harrison, Julian AU - Bhogal, Adaresh AU - Penas Morán, Patricia AU - Hui, Ada AU - Quadri, Dania AU - Robinson, Clare AU - Smuk, Melanie AU - Farkas, Marianne AU - Davidson, Larry AU - van der Krieke, Lian AU - Slade, Emily AU - Bond, Carmel AU - Nicholson, Joe AU - Grundy, Andrew AU - Charles, Ashleigh AU - Hare-Duke, Laurie AU - Pollock, Kristian AU - Ng, Fiona PY - 2021/5/27 TI - Recorded Mental Health Recovery Narratives as a Resource for People Affected by Mental Health Problems: Development of the Narrative Experiences Online (NEON) Intervention JO - JMIR Form Res SP - e24417 VL - 5 IS - 5 KW - narratives KW - storytelling KW - intervention development KW - mental health KW - online intervention KW - patient involvement KW - narrative medicine KW - internet KW - recovery KW - mobile phone N2 - Background: The internet enables sharing of narratives about health concerns on a substantial scale, and some digital health narratives have been integrated into digital health interventions. Narratives describing recovery from health problems are a focus of research, including those presented in recorded (eg, invariant) form. No clinical trial has been conducted on a web-based intervention providing access to a collection of Recorded Recovery Narratives (RRNs). Objective: This study presents knowledge produced through the development of the Narrative Experiences Online (NEON) Intervention, a web-based intervention incorporating the algorithmic recommendation of RRNs. Methods: Knowledge was gathered through knowledge integration (KI) activities. KI1 synthesized previous studies to produce the NEON Impact Model describing how accessing RRNs produces health-related outcomes. KI2 developed curation principles for the NEON Collection of RRNs through consultation with the NEON Lived Experience Advisory Panel and the curation of a preliminary collection. KI3 identified harm minimization strategies for the NEON Intervention through consultation with the NEON International Advisory Board and Lived Experience Advisory Panel. The NEON Intervention was finalized through 2 research studies (RS). In RS1, mental health service users (N=40) rated the immediate impact of randomly presented narratives to validate narrative feedback questions used to inform the recommendation algorithm. In RS2, mental health service users (n=25) were interviewed about their immediate response to a prototype of the NEON Intervention and trial procedures and then were interviewed again after 1 month of use. The usability and acceptability of the prototype and trial procedures were evaluated and refinements were made. Results: KI1 produced the NEON Impact Model, which identifies moderators (recipient and context), mechanisms of connection (reflection, comparison, learning, and empathy), processes (identification of change from narrative structure or content and internalization of observed change), and outcomes (helpful and unhelpful). KI2 identified 22 curation principles, including a mission to build a large, heterogeneous collection to maximize opportunities for connection. KI3 identified seven harm minimization strategies, including content warnings, proactive and reactive blocking of narratives, and providing resources for the self-management of emotional distress. RS1 found variation in the impact of narratives on different participants, indicating that participant-level feedback on individual narratives is needed to inform a recommender system. The order of presentation did not predict narrative feedback. RS2 identified amendments to web-based trial procedures and the NEON Intervention. Participants accessed some narratives multiple times, use reduced over the 4-week period, and narrative feedback was provided for 31.8% (105/330) of narrative accesses. Conclusions: RRNs can be integrated into web-based interventions. Evaluating the NEON Intervention in a clinical trial is feasible. The mixed methods design for developing the NEON Intervention can guide its extension to other clinical populations, the design of other web-based mental health interventions, and the development of narrative-based interventions in mental health. UR - https://formative.jmir.org/2021/5/e24417 UR - http://dx.doi.org/10.2196/24417 UR - http://www.ncbi.nlm.nih.gov/pubmed/34042595 ID - info:doi/10.2196/24417 ER - TY - JOUR AU - Hossain, N. Saima AU - Jaglal, B. Susan AU - Shepherd, John AU - Perrier, Laure AU - Tomasone, R. Jennifer AU - Sweet, N. Shane AU - Luong, Dorothy AU - Allin, Sonya AU - Nelson, A. Michelle L. AU - Guilcher, T. Sara J. AU - Munce, P. Sarah E. PY - 2021/5/25 TI - Web-Based Peer Support Interventions for Adults Living With Chronic Conditions: Scoping Review JO - JMIR Rehabil Assist Technol SP - e14321 VL - 8 IS - 2 KW - online KW - peer support KW - self-management KW - chronic conditions KW - scoping review N2 - Background: Globally, 1 in 3 adults live with multiple chronic conditions. Thus, effective interventions are needed to prevent and manage these chronic conditions and to reduce the associated health care costs. Teaching effective self-management practices to people with chronic diseases is one strategy to address the burden of chronic conditions. With the increasing availability of and access to the internet, the implementation of web-based peer support programs has become increasingly common. Objective: The purpose of this scoping review is to synthesize existing literature and key characteristics of web-based peer support programs for persons with chronic conditions. Methods: This scoping review follows the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) extension for scoping reviews guidelines. Studies were identified by searching MEDLINE, CINAHL, Embase, PsycINFO, and the Physiotherapy Evidence Database. Chronic diseases identified by the Public Health Agency of Canada were included. Our review was limited to peer support interventions delivered on the web. Peers providing support had to have the chronic condition that they were providing support for. The information abstracted included the year of publication, country of study, purpose of the study, participant population, key characteristics of the intervention, outcome measures, and results. Results: After duplicates were removed, 12,641 articles were screened. Data abstraction was completed for 41 articles. There was a lack of participant diversity in the included studies, specifically with respect to the conditions studied. There was a lack of studies with older participants aged ?70 years. There was inconsistency in how the interventions were described in terms of the duration and frequency of the interventions. Informational, emotional, and appraisal support were implemented in the studied interventions. Few studies used a randomized controlled trial design. A total of 4 of the 6 randomized controlled trials reported positive and significant results, including decreased emotional distress and increased health service navigation, self-efficacy, social participation, and constructive attitudes and approaches. Among the qualitative studies included in this review, there were several positive experiences related to participating in a web-based peer support intervention, including increased compassion and improved attitudes toward the individual?s chronic condition, access to information, and empowerment. Conclusions: There is limited recent, high-level evidence on web-based peer support interventions. Where evidence exists, significant improvements in social participation, self-efficacy, and health-directed activity were demonstrated. Some studies incorporated a theoretical framework, and all forms of peer support?emotional, informational, and appraisal support?were identified in the studies included in this review. We recommend further research on web-based peer support in more diverse patient groups (eg, for older adults and chronic conditions outside of cancer, cardiovascular disease, and HIV or AIDS). Key gaps in the area of web-based peer support will serve to inform the development and implementation of future programs. UR - https://rehab.jmir.org/2021/2/e14321 UR - http://dx.doi.org/10.2196/14321 UR - http://www.ncbi.nlm.nih.gov/pubmed/34032572 ID - info:doi/10.2196/14321 ER - TY - JOUR AU - Li, PengFei AU - Xu, Lin AU - Tang, Tingting AU - Wu, Xiaoqian AU - Huang, Cheng PY - 2021/5/21 TI - Willingness to Adopt Health Information Among Social Question-and-Answer Community Users in China: Cross-sectional Survey Study JO - J Med Internet Res SP - e27811 VL - 23 IS - 5 KW - health information adoption KW - social question-and-answer community KW - structural equation model KW - Zhihu N2 - Background: COVID-19 has spread around the world and has increased the public?s need for health information in the process. Meanwhile, in the context of lockdowns and other measures for preventing SARS-CoV-2 spread, the internet has surged as a web-based resource for health information. Under these conditions, social question-and-answer communities (SQACs) are playing an increasingly important role in improving public health literacy. There is great theoretical and practical significance in exploring the influencing factors of SQAC users? willingness to adopt health information. Objective: The aim of this study was to establish an extended unified theory of acceptance and use of technology model that could analyze the influence factors of SQAC users? willingness to adopt health information. Particularly, we tried to test the moderating effects that different demographic characteristics had on the variables? influences. Methods: This study was conducted by administering a web-based questionnaire survey and analyzing the responses from a final total of 598 valid questionnaires after invalid data were cleaned. By using structural equation modelling, the influencing factors of SQAC users? willingness to adopt health information were analyzed. The moderating effects of variables were verified via hierarchical regression. Results: Performance expectation (?=.282; P<.001), social influence (?=.238; P=.02), and facilitating conditions (?=.279; P=.002) positively affected users? willingness to adopt health information, whereas effort expectancy (P=.79) and perceived risk (P=.41) had no significant effects. Gender had a significant moderating effect in the structural equation model (P<.001). Conclusions: SQAC users? willingness to adopt health information was evidently affected by multiple factors, such as performance expectation, social influence, and facilitating conditions. The structural equation model proposed in this study has a good fitting degree and good explanatory power for users? willingness to adopt health information. Suggestions were provided for SQAC operators and health management agencies based on our research results. UR - https://www.jmir.org/2021/5/e27811 UR - http://dx.doi.org/10.2196/27811 UR - http://www.ncbi.nlm.nih.gov/pubmed/33970865 ID - info:doi/10.2196/27811 ER - TY - JOUR AU - Pereira, Filipa AU - Querido, Isabel Ana AU - Bieri, Marion AU - Verloo, Henk AU - Laranjeira, António Carlos PY - 2021/5/13 TI - Presenteeism Among Nurses in Switzerland and Portugal and Its Impact on Patient Safety and Quality of Care: Protocol for a Qualitative Study JO - JMIR Res Protoc SP - e27963 VL - 10 IS - 5 KW - healthcare KW - nurses KW - predictors KW - presenteeism KW - quality of care KW - frontline KW - managers KW - Portugal KW - Switzerland KW - patient safety KW - patients KW - safety KW - stress KW - emotion KW - knowledge transfer KW - acute care KW - long-term care N2 - Background: Nurses dispense direct care in a wide variety of settings and are considered the backbone of the health care system. They often work long hours, face emotional stress, and are at a high risk of psychosocial and somatic illnesses. Nurses sometimes fall sick but work regardless, leading to presenteeism and subsequent risks to quality of care and patient safety due to the increased likelihood of patients falling, medication errors, and staff-to-patient disease transmission. Objective: This study aims to understand presenteeism among frontline nurses and nurse managers in acute, primary, and long-term health care settings and to contribute to the development of future interventional studies and recommendations. Methods: A qualitative study based on online focus group discussions will explore the perceptions of, attitudes to, and experiences with presenteeism among frontline nurses and nurse managers. Using a pilot-tested interview guide, 8 focus group discussions will involve nurses working in acute care hospitals, primary care settings, and long-term residential care facilities in Switzerland?s French-speaking region and Portugal?s Center region. The data collected will be examined using a content analysis approach via NVivo 12 QSR International software. Results: The University of Applied Sciences and Arts Western Switzerland?s School of Health Sciences and the Polytechnic of Leiria?s School of Health Sciences in Portugal have both approved funding for the study. The research protocol has been approved by ethics committees in both countries. Study recruitment commenced in February 2021. The results of the data analysis are expected by September 2021. Conclusions: This present study aims to gain more insight into the dilemmas facing nurses as a result of all causes of presenteeism among frontline nurses and nurse managers in different health care settings. The researchers will prepare manuscripts on the study?s findings, publish them in relevant peer-reviewed journals, exhibit them in poster presentations, and give oral presentations at appropriate academic and nonscientific conferences. Regarding further knowledge transfer, researchers will engage with stakeholders to craft messages focused on the needs of nurses and nurse managers and on disseminating our research findings to deal with the issue of nursing presenteeism. International Registered Report Identifier (IRRID): PRR1-10.2196/27963 UR - https://www.researchprotocols.org/2021/5/e27963 UR - http://dx.doi.org/10.2196/27963 UR - http://www.ncbi.nlm.nih.gov/pubmed/33983134 ID - info:doi/10.2196/27963 ER - TY - JOUR AU - Bristowe, Kristina Sean AU - Ghosh, Monty Sumantra AU - Trew, Michael AU - AU - Rittenbach, Katherine PY - 2021/5/12 TI - Virtual Overdose Response for People Who Use Opioids Alone: Protocol for a Feasibility and Clinical Trial Study JO - JMIR Res Protoc SP - e20183 VL - 10 IS - 5 KW - harm reduction KW - opioid crisis KW - overdose response KW - people with lived experience KW - peers N2 - Background: A recent quarterly report released by Alberta Health reports that on average 2.5 Albertans die every day from accidental overdose deaths, and that between April 1, 2020, and June 30, 2020, the province lost a total of 301 people. In Canada, between January 2016 and March 2020, a total of 16,364 people died due to opioid-related overdose. The World Health Organization reports that 70% of the 0.5 million deaths worldwide caused by drugs are related to opioid overdose. Although supervised consumption sites or safe injection sites have been shown to be effective in reducing the harms associated with the use of illicit substances and increasing uptake of addiction treatment and other health services, there is still significant stigma associated with them, and it is unlikely that all of the people who would benefit from supervised consumption service will ever access a site. Objective: To help prevent deaths in populations that cannot or will not access physical safer consumption services in Alberta, we propose to provide virtual (telephone-based) overdose response services, staffed by people with lived experience.The primary outcome for this study is uptake of the service as measured by the number of calls to the service. Secondary outcomes will include patterns of use of the phone line (days of the week and time of calls) and outcomes from the calls (number of emergency medical services dispatches for overdoses from the service and the results of those dispatches). Methods: This phase 1 clinical study is set to officially launch in early May 2020. The service will be available to up to 15 participants who self-disclose as using opioids unobserved and have given informed consent for both data collection and interviews. This group will have access to a toll-free telephone number and be invited to call when they plan to use opioids alone. Results: The analysis will include mixed methods. To improve the design of the service and ensure safety of all involved, quantitative data will be collected on phone calls and participant health care usage, while qualitative data will be collected from both participants and virtual overdose response operators Conclusions: This clinical trial aims to test the feasibility of a service that provides virtual overdose response in order to help prevent deaths in populations that cannot or will not access physical supervised consumption services in Alberta. Trial Registration: ClinicalTrials.gov NCT04391192; https://www.clinicaltrials.gov/ct2/show/NCT04391192 International Registered Report Identifier (IRRID): DERR1-10.2196/20183 UR - https://www.researchprotocols.org/2021/5/e20183 UR - http://dx.doi.org/10.2196/20183 UR - http://www.ncbi.nlm.nih.gov/pubmed/33978598 ID - info:doi/10.2196/20183 ER - TY - JOUR AU - Bunyan, Alden AU - Venuturupalli, Swamy AU - Reuter, Katja PY - 2021/5/6 TI - Expressed Symptoms and Attitudes Toward Using Twitter for Health Care Engagement Among Patients With Lupus on Social Media: Protocol for a Mixed Methods Study JO - JMIR Res Protoc SP - e15716 VL - 10 IS - 5 KW - health promotion KW - infodemiology KW - infoveillance KW - Internet KW - listening KW - lupus KW - systematic lupus erythematosus KW - surveillance KW - Twitter KW - survey KW - social media KW - social network N2 - Background: Lupus is a complex autoimmune disease that is difficult to diagnose and treat. It is estimated that at least 5 million Americans have lupus, with more than 16,000 new cases of lupus being reported annually in the United States. Social media provides a platform for patients to find rheumatologists and peers and build awareness of the condition. Researchers have suggested that the social network Twitter may serve as a rich avenue for exploring how patients communicate about their health issues. However, there is a lack of research about the characteristics of lupus patients on Twitter and their attitudes toward using Twitter for engaging them with their health care. Objective: This study has two objectives: (1) to conduct a content analysis of Twitter data published by users (in English) in the United States between September 1, 2017 and October 31, 2018 to identify patients who publicly discuss their lupus condition and to assess their expressed health themes and (2) to conduct a cross-sectional survey among these lupus patients on Twitter to study their attitudes toward using Twitter for engaging them with their health care. Methods: This is a mixed methods study that analyzes retrospective Twitter data and conducts a cross-sectional survey among lupus patients on Twitter. We used Symplur Signals, a health care social media analytics platform, to access the Twitter data and analyze user-generated posts that include keywords related to lupus. We will use descriptive statistics to analyze the data and identify the most prevalent topics in the Twitter content among lupus patients. We will further conduct self-report surveys via Twitter by inviting all identified lupus patients who discuss their lupus condition on Twitter. The goal of the survey is to collect data about the characteristics of lupus patients (eg, gender, race/ethnicity, educational level) and their attitudes toward using Twitter for engaging them with their health care. Results: This study has been funded by the National Center for Advancing Translational Science through a Clinical and Translational Science Award. The institutional review board at the University of Southern California (HS-19-00048) approved the study. Data extraction and cleaning are complete. We obtained 47,715 Twitter posts containing terms related to ?lupus? from users in the United States published in English between September 1, 2017 and October 31, 2018. We included 40,885 posts in the analysis. Data analysis was completed in Fall 2020. Conclusions: The data obtained in this pilot study will shed light on whether Twitter provides a promising data source for garnering health-related attitudes among lupus patients. The data will also help to determine whether Twitter might serve as a potential outreach platform for raising awareness of lupus among patients and implementing related health education interventions. International Registered Report Identifier (IRRID): DERR1-10.2196/15716 UR - https://www.researchprotocols.org/2021/5/e15716 UR - http://dx.doi.org/10.2196/15716 UR - http://www.ncbi.nlm.nih.gov/pubmed/33955845 ID - info:doi/10.2196/15716 ER - TY - JOUR AU - Zhang, Xing AU - Hu, Wenli AU - Xiao, Quan PY - 2021/5/4 TI - Influences of Medical Crowdfunding Website Design Features on Trust and Intention to Donate: Controlled Laboratory Experiment JO - J Med Internet Res SP - e25554 VL - 23 IS - 5 KW - medical crowdfunding KW - website design KW - cognition-based trust KW - affect-based trust KW - intention to donate N2 - Background: As a type of donation-based crowdfunding, medical crowdfunding has gradually become an important way for patients who have difficulty paying medical bills to seek help from the public. However, many people still have limited confidence in donating money to medical crowdfunding projects. Objective: Given that the features of a medical crowdfunding website may be important to gain users? trust, this study draws upon two-factor and trust theories to explore how different design features of medical crowdfunding websites affect potential donors? cognition-based trust and affect-based trust, and how these types of trust affect the intention to donate. Methods: A 2 (informativeness: high vs low) × 2 (visual cues: cool color vs warm color) × 2 (social cues: with vs without) between-subject laboratory experiment was performed to validate our research model. A total of 320 undergraduate students recruited from a university in China participated in the controlled laboratory experiment. Results: Cognition-based trust (?=.528, P<.001) and affect-based trust (?=.344, P<.001) exerted significant effects on the intention to donate of potential donors of medical crowdfunding. Informativeness as a hygiene factor positively influenced potential donors? cognition-based trust (F1,311=49.764, P<.001) and affect-based trust (F1,311=16.093, P<.001), whereas social cues as a motivating factor significantly influenced potential donors? cognition-based trust (F1,311=38.160, P<.001) and affect-based trust (F1,311=23.265, P<.001). However, the color of the webpages affected the two dimensions of trust differently. Specifically, medical crowdfunding webpages with warm colors were more likely to induce affect-based trust than those with cool colors (F1,311=17.120, P<.001), whereas no significant difference was found between the effects of cool and warm colors on cognition-based trust (F1,311=1.707, P=.19). Conclusions: This study deepens our understanding of the relationships among the design features of medical crowdfunding websites, trust, and intention to donate, and provides guidelines for managers of medical crowdfunding platforms to enhance potential donors? trust-building by improving the website design features. UR - https://www.jmir.org/2021/5/e25554 UR - http://dx.doi.org/10.2196/25554 UR - http://www.ncbi.nlm.nih.gov/pubmed/33944787 ID - info:doi/10.2196/25554 ER - TY - JOUR AU - Xun, Helen AU - He, Waverley AU - Chen, Jonlin AU - Sylvester, Scott AU - Lerman, F. Sheera AU - Caffrey, Julie PY - 2021/4/30 TI - Characterization and Comparison of the Utilization of Facebook Groups Between Public Medical Professionals and Technical Communities to Facilitate Idea Sharing and Crowdsourcing During the COVID-19 Pandemic: Cross-sectional Observational Study JO - JMIR Form Res SP - e22983 VL - 5 IS - 4 KW - cognitive intelligence KW - communication KW - COVID-19 KW - crowdsourcing KW - evidence-based KW - Facebook KW - Facebook groups KW - internet KW - social media KW - virtual communities N2 - Background: Strict social distancing measures owing to the COVID-19 pandemic have led people to rely more heavily on social media, such as Facebook groups, as a means of communication and information sharing. Multiple Facebook groups have been formed by medical professionals, laypeople, and engineering or technical groups to discuss current issues and possible solutions to the current medical crisis. Objective: This study aimed to characterize Facebook groups formed by laypersons, medical professionals, and technical professionals, with specific focus on information dissemination and requests for crowdsourcing. Methods: Facebook was queried for user-created groups with the keywords ?COVID,? ?Coronavirus,? and ?SARS-CoV-2? at a single time point on March 31, 2020. The characteristics of each group were recorded, including language, privacy settings, security requirements to attain membership, and membership type. For each membership type, the group with the greatest number of members was selected, and in each of these groups, the top 100 posts were identified using Facebook?s algorithm. Each post was categorized and characterized (evidence-based, crowd-sourced, and whether the poster self-identified). STATA (version 13 SE, Stata Corp) was used for statistical analysis. Results: Our search yielded 257 COVID-19?related Facebook groups. Majority of the groups (n=229, 89%) were for laypersons, 26 (10%) were for medical professionals, and only 2 (1%) were for technical professionals. The number of members was significantly greater in medical groups (21,215, SD 35,040) than in layperson groups (7623, SD 19,480) (P<.01). Medical groups were significantly more likely to require security checks to attain membership (81% vs 43%; P<.001) and less likely to be public (3 vs 123; P<.001) than layperson groups. Medical groups had the highest user engagement, averaging 502 (SD 633) reactions (P<.01) and 224 (SD 311) comments (P<.01) per post. Medical professionals were more likely to use the Facebook groups for education and information sharing, including academic posts (P<.001), idea sharing (P=.003), resource sharing (P=.02) and professional opinions (P<.001), and requesting for crowdsourcing (P=.003). Layperson groups were more likely to share news (P<.001), humor and motivation (P<.001), and layperson opinions (P<.001). There was no significant difference in the number of evidence-based posts among the groups (P=.10). Conclusions: Medical professionals utilize Facebook groups as a forum to facilitate collective intelligence (CI) and are more likely to use Facebook groups for education and information sharing, including academic posts, idea sharing, resource sharing, and professional opinions, which highlights the power of social media to facilitate CI across geographic distances. Layperson groups were more likely to share news, humor, and motivation, which suggests the utilization of Facebook groups to provide comedic relief as a coping mechanism. Further investigations are necessary to study Facebook groups? roles in facilitating CI, crowdsourcing, education, and community-building. UR - https://formative.jmir.org/2021/4/e22983 UR - http://dx.doi.org/10.2196/22983 UR - http://www.ncbi.nlm.nih.gov/pubmed/33878013 ID - info:doi/10.2196/22983 ER - TY - JOUR AU - Nagawa, S. Catherine AU - Faro, M. Jamie AU - Menon, J. Anitha AU - Ito Fukunaga, Mayuko AU - Williams, H. Jessica AU - Mourao, Dalton AU - Emidio, M. Oluwabunmi AU - Davis, Maryann AU - Pbert, Lori AU - Cutrona, L. Sarah AU - Houston, K. Thomas AU - Sadasivam, S. Rajani PY - 2021/4/30 TI - Written Advice Given by African American Smokers to Their Peers: Qualitative Study of Motivational Messages JO - JMIR Form Res SP - e21481 VL - 5 IS - 4 KW - tobacco disparities KW - peer-to-peer KW - communication KW - smoking KW - cessation KW - thematic analysis KW - intervention KW - African American N2 - Background: Although African Americans have the lowest rates of smoking onset and progression to daily smoking, they are less likely to achieve long-term cessation. Interventions tailored to promote use of cessation resources in African American individuals who smoke are needed. In our past work, we demonstrated the effectiveness of a technology-assisted peer-written message intervention for increasing smoking cessation in non-Hispanic White smokers. In this formative study, we have adapted this intervention to be specific for African American smokers. Objective: We aimed to report on the qualitative analysis of messages written by African American current and former smokers for their peers in response to hypothetical scenarios of smokers facing cessation challenges. Methods: We recruited African American adult current and former smokers (n=41) via ResearchMatch between April 2017 and November 2017. We asked participants to write motivational messages for their peers in response to smoking-related hypothetical scenarios. We also collected data on sociodemographic factors and smoking characteristics. Thematic analysis was conducted to identify cessation strategies suggested by the study participants. Results: Among the study participants, 60% (25/41) were female. Additionally, more than half (23/41, 56%) were thinking about quitting, 29% (12/41) had set a quit date, and 27% (11/41) had used electronic cigarettes in the past 30 days. Themes derived from the qualitative analysis of peer-written messages were (1) behavioral strategies, (2) seeking help, (3) improvements in quality of life, (4) attitudes and expectations, and (5) mindfulness/religious or spiritual practices. Under the behavioral strategies theme, distraction strategies were the most frequently suggested strategies (referenced 84 times in the 318 messages), followed by use of evidence-based treatments/cessation strategies. Within the seeking help theme, subthemes included seeking help or support from family/friends or close social networks (referenced 56 times) and health care professionals (referenced 22 times). The most frequent subthemes that emerged from improvements in the quality of life theme included improving one?s health (referenced 22 times) and quality of life (referenced 21 times). Subthemes that emerged from the attitude and expectations theme included practicing positive self-talk (referenced 27 times), autonomy/independence from the smoking habit (referenced six times), and financial cost of smoking (referenced five times). The two subthemes that emerged from the mindfulness/religious or spiritual practices theme were use of self-awareness techniques (referenced 36 times) and religious or spiritual practices to cope (referenced 13 times). Conclusions: Our approach to adapt a prior peer-message intervention to African American smokers yielded a set of evidence-based messages that may be suitable for smokers at all phases of motivation to quit (ready to quit or not ready to quit). In future research, we plan to assess the impact of texting these messages to African American smokers in a smoking cessation trial. UR - https://formative.jmir.org/2021/4/e21481 UR - http://dx.doi.org/10.2196/21481 UR - http://www.ncbi.nlm.nih.gov/pubmed/33929332 ID - info:doi/10.2196/21481 ER - TY - JOUR AU - Walter, A. Lauren AU - Li, Li AU - Rodgers, B. Joel AU - Hess, J. Jennifer AU - Skains, M. Rachel AU - Delaney, C. Matthew AU - Booth, James AU - Hess, P. Erik PY - 2021/4/29 TI - Development of an Emergency Department?Based Intervention to Expand Access to Medications for Opioid Use Disorder in a Medicaid Nonexpansion Setting: Protocol for Engagement and Community Collaboration JO - JMIR Res Protoc SP - e18734 VL - 10 IS - 4 KW - opioid use disorder KW - mediation for opioid use disorder KW - emergency medicine KW - buprenorphine KW - peer support services N2 - Background: The opioid epidemic has disproportionately impacted areas in the Appalachian region of the United States. Characterized by persistent Medicaid nonexpansion, higher poverty rates, and health care access challenges, populations residing in these areas of the United States have experienced higher opioid overdose death rates than those in other parts of the country. Jefferson County, Alabama, located in Southern Appalachia, has been especially affected, with overdose rates over 2 times greater than the statewide average (48.8 vs 19.9 overdoses per 10,000 persons). Emergency departments (EDs) have been recognized as a major health care source for persons with opioid use disorder (OUD). A program to initiate medications for OUD in the ED has been shown to be effective in treatment retention. Likewise, continued patient engagement in a recovery or treatment program after ED discharge has been shown to be efficient for long-term treatment success. Objective: This protocol outlines a framework for ED-initiated medications for OUD in a resource-limited region of the United States; the study will be made possible through community partnerships with referral resources for definitive OUD care. Methods: When a patient presents to the ED with symptoms of opioid withdrawal, nonfatal opioid overdose, or requesting opioid detoxification, clinicians will consider the diagnosis of OUD using the Diagnostic and Statistical Manual of Mental Disorders (fifth edition) criteria. All patients meeting the diagnostic criteria for moderate to severe OUD will be further engaged and assessed for study eligibility. Recruited subjects will be evaluated for signs and symptoms of withdrawal, treated with buprenorphine-naloxone as appropriate, and given a prescription for take-home induction along with an intranasal naloxone kit. At the time of ED discharge, a peer navigator from a local substance use coordinating center will be engaged to facilitate patient referral to a regional substance abuse coordinating center for longitudinal addiction treatment. Results: This project is currently ongoing; it received funding in February 2019 and was approved by the institutional review board of the University of Alabama at Birmingham in June 2019. Data collection began on July 7, 2019, with a projected end date in February 2022. In total, 79 subjects have been enrolled to date. Results will be published in the summer of 2022. Conclusions: ED recognition of OUD accompanied by buprenorphine-naloxone induction and referral for subsequent long-term treatment engagement have been shown to be components of an effective strategy for addressing the ongoing opioid crisis. Establishing community and local partnerships, particularly in resource-limited areas, is crucial for the continuity of addiction care and rehabilitation outcomes. International Registered Report Identifier (IRRID): DERR1-10.2196/18734 UR - https://www.researchprotocols.org/2021/4/e18734 UR - http://dx.doi.org/10.2196/18734 UR - http://www.ncbi.nlm.nih.gov/pubmed/33913818 ID - info:doi/10.2196/18734 ER - TY - JOUR AU - Koyama, Sachiko AU - Ueha, Rumi AU - Kondo, Kenji PY - 2021/4/22 TI - Loss of Smell and Taste in Patients With Suspected COVID-19: Analyses of Patients? Reports on Social Media JO - J Med Internet Res SP - e26459 VL - 23 IS - 4 KW - COVID-19 KW - anosmia KW - ageusia KW - free reports on social media KW - symptomatic KW - asymptomatic KW - recovery of senses KW - symptom KW - social media KW - smell KW - taste KW - senses KW - patient-reported KW - benefit KW - limit KW - diagnosis N2 - Background: The year 2020 was the year of the global COVID-19 pandemic. The severity of the situation has become so substantial that many or even most of the patients with mild to moderate symptoms had to self-isolate without specific medical treatments or even without being tested for COVID-19. Many patients joined internet membership groups to exchange information and support each other. Objective: Our goal is to determine the benefits and limits of using social media to understand the symptoms of patients with suspected COVID-19 with mild to moderate symptoms and, in particular, their symptoms of anosmia (loss of the sense of smell) and ageusia (loss of the sense of taste). The voluntary reports on an internet website of a membership group will be the platform of the analyses. Methods: Posts and comments of members of an internet group known as COVID-19 Smell and Taste Loss, founded on March 24, 2020, to support patients with suspected COVID-19 were collected and analyzed daily. Demographic data were collected using the software mechanism called Group Insights on the membership group website. Results: Membership groups on social media have become rare sources of support for patients with suspected COVID-19 with mild to moderate symptoms. These groups provided mental support to their members and became resources for information on COVID-19 tests and medicines or supplements. However, the membership was voluntary, and often the members leave without notification. It is hard to be precise from the free voluntary reports. The number of women in the group (6995/9227, 75.38% as of October 12, 2020) was about three times more than men (2272/9227, 24.62% as of October 12, 2020), and the peak age of members was between 20-40 years in both men and women. Patients who were asymptomatic other than the senses comprised 14.93% (53/355) of the total patients. Recovery of the senses was higher in the patients who were asymptomatic besides having anosmia and ageusia. Most (112/123, 91.06%) patients experienced other symptoms first and then lost their senses, on average, 4.2 days later. Patients without other symptoms tended to recover earlier (P=.02). Patients with anosmia and ageusia occasionally reported distorted smell and taste (parosmia and dysgeusia) as well as experiencing or perceiving the smell and taste without the sources of the smell or taste (phantosmia and phantogeusia). Conclusions: Our analysis of the social media database of suspected COVID-19 patients? voices demonstrated that, although accurate diagnosis of patients is not always obtained with social media?based analyses, it may be a useful tool to collect a large amount of data on symptoms and the clinical course of worldwide rapidly growing infectious diseases. UR - https://www.jmir.org/2021/4/e26459 UR - http://dx.doi.org/10.2196/26459 UR - http://www.ncbi.nlm.nih.gov/pubmed/33788699 ID - info:doi/10.2196/26459 ER - TY - JOUR AU - Budimir, Sanja AU - Kuska, Martin AU - Spiliopoulou, Myra AU - Schlee, Winfried AU - Pryss, Rüdiger AU - Andersson, Gerhard AU - Goedhart, Hazel AU - Harrison, Stephen AU - Vesala, Markku AU - Hegde, Gourish AU - Langguth, Berthold AU - Pieh, Christoph AU - Probst, Thomas PY - 2021/4/8 TI - Reasons for Discontinuing Active Participation on the Internet Forum Tinnitus Talk: Mixed Methods Citizen Science Study JO - JMIR Form Res SP - e21444 VL - 5 IS - 4 KW - tinnitus KW - Tinnitus Talk KW - Internet forum KW - dropout KW - reasons for discontinuation N2 - Background: Tinnitus Talk is a nonprofit online self-help forum. Asking inactive users about their reasons for discontinued usage of health-related online platforms such as Tinnitus Talk is important for quality assurance. Objective: The aim of this study was to explore reasons for discontinued use of Tinnitus Talk, and their associations to the perceptions of Tinnitus Talk and the age of users who ceased logging on to the platform. Methods: Initially, 13,745 users that did not use Tinnitus Talk within the previous 2 months were contacted and the response rate was 20.47% (n=2814). After dataset filtering, a total of 2172 past members of Tinnitus Talk were included in the analyses. Nine predefined reasons for discontinued usage of Tinnitus Talk were included in the survey as well as one open question. Moreover, there were 14 predefined questions focusing on perception of Tinnitus Talk (usefulness, content, community, and quality of members? posts). Mixed methods analyses were performed. Frequencies and correlation coefficients were calculated for quantitative data, and grounded theory methodology was utilized for exploration of the qualitative data. Results: Quantitative analysis revealed reasons for discontinued use of Tinnitus Talk as well as associations of these reasons with perceptions of Tinnitus Talk and age. Among the eight predefined reasons for discontinued use of Tinnitus Talk, the most frequently reported was not finding the information they were looking for (451/2695, 16.7%). Overall, the highest rated perception of Tinnitus Talk was content-related ease of understanding (mean 3.9, SD 0.64). A high number (nearly 40%) of participants provided additional free text explaining why they discontinued use. Qualitative analyses identified a total of 1654 specific reasons, more than 93% of which (n=1544) could be inductively coded. The coding system consisted of 33 thematically labeled codes clustered into 10 categories. The most frequent additional reason for discontinuing use was thinking that there is no cure or help for tinnitus symptoms (375/1544, 24.3%). Significant correlations (P<.001) were observed between reasons for discontinued usage and perception of Tinnitus Talk. Several reasons for discontinued usage were associated with the examined dimensions of perception of Tinnitus Talk (usefulness, content, community, as well as quality of members? posts). Moreover, significant correlations (P<.001) between age and reasons for discontinued use were found. Older age was associated with no longer using Tinnitus Talk because of not finding what they were looking for. In addition, older participants had a generally less positive perception of Tinnitus Talk than younger participants (P<.001). Conclusions: This study contributes to understanding the reasons for discontinued usage of online self-help platforms, which are typically only reported according to the dropout rates. Furthermore, specific groups of users who did not benefit from Tinnitus Talk were identified, and several practical implications for improvement of the structure, content, and goals of Tinnitus Talk were suggested. UR - https://formative.jmir.org/2021/4/e21444 UR - http://dx.doi.org/10.2196/21444 UR - http://www.ncbi.nlm.nih.gov/pubmed/33830060 ID - info:doi/10.2196/21444 ER - TY - JOUR AU - Bailey, Eleanor AU - Robinson, Jo AU - Alvarez-Jimenez, Mario AU - Nedeljkovic, Maja AU - Valentine, Lee AU - Bendall, Sarah AU - D'Alfonso, Simon AU - Gilbertson, Tamsyn AU - McKechnie, Ben AU - Rice, Simon PY - 2021/4/5 TI - Moderated Online Social Therapy for Young People With Active Suicidal Ideation: Qualitative Study JO - J Med Internet Res SP - e24260 VL - 23 IS - 4 KW - suicide KW - youth KW - social media KW - internet-based intervention N2 - Background: Web-based interventions are a promising approach to support youth at risk of suicide, and those incorporating peer-to-peer social networking may have the added potential to target interpersonal states of perceived burdensomeness and thwarted belongingness. Owing to feasibility and safety concerns, including fear of contagion, this had not been tested until recently. In 2018, we conducted a pilot evaluation to test the feasibility, safety, and acceptability of a Moderated Online Social Therapy intervention, called Affinity, with a sample of young people with active suicidal ideation. Objective: The aim of this study is to report qualitative data collected from study participants regarding their experience of the web-based social network and the consequent safety features. Methods: Affinity is a closed website incorporating 3 key components: therapeutic content delivered via comics, peer-to-peer social networking, and moderation by peers and clinicians. Semistructured interviews were conducted with 17 young people who participated in the pilot study after 8 weeks of exposure to the intervention. Interview data from 2 young people who did not use Affinity were excluded from the analysis. The interviews were analyzed using thematic analysis, with the frequency of responses characterized using the consensual qualitative research method. The results are reported in accordance with the Consolidated Criteria for Reporting Qualitative Research checklist. Results: A total of 4 overarching themes were identified: a safe and supportive environment, the importance of mutual experiences, difficulty engaging and connecting, and the pros and cons of banning discussions about suicide. Interestingly, although Affinity was perceived to be safe and free of judgment, concerns about negative evaluation and triggering others were significant barriers to posting on the social network. Participants generally supported the banning of conversations about suicide, although for some this was perceived to reinforce stigma or was associated with frustration and distress. Conclusions: The results not only support the safety and potential therapeutic benefit of the social networking aspect of Affinity but also highlight several implementation challenges. There is a need to carefully balance the need for stringent safety and design features while ensuring that the potential for therapeutic benefit is maximized. UR - https://www.jmir.org/2021/4/e24260 UR - http://dx.doi.org/10.2196/24260 UR - http://www.ncbi.nlm.nih.gov/pubmed/33818392 ID - info:doi/10.2196/24260 ER - TY - JOUR AU - Li, PengFei AU - Xu, Lin AU - Tang, TingTing AU - Wu, Xiaoqian AU - Huang, Cheng PY - 2021/3/30 TI - Users? Willingness to Share Health Information in a Social Question-and-Answer Community: Cross-sectional Survey in China JO - JMIR Med Inform SP - e26265 VL - 9 IS - 3 KW - health information KW - willingness to share information KW - KW - structural equation model KW - Zhihu N2 - Background: Social question-and-answer communities play an increasingly important role in the dissemination of health information. It is important to identify influencing factors of user willingness to share health information to improve public health literacy. Objective: This study explored influencing factors of social question-and-answer community users who share health information to provide reference for the construction of a high-quality health information sharing community. Methods: A cross-sectional study was conducted through snowball sampling of 185 participants who are Zhihu users in China. A structural equation analysis was used to verify the interaction and influence of the strength between variables in the model. Hierarchical regression was also used to test the mediating effect in the model. Results: Altruism (?=.264, P<.001), intrinsic reward (?=.260, P=.03), self-efficacy (?=.468, P<.001), and community influence (?=.277, P=.003) had a positive effect on users? willingness to share health information (WSHI). By contrast, extrinsic reward (?=?0.351, P<.001) had a negative effect. Self-efficacy also had a mediating effect (?=.147, 29.15%, 0.147/0.505) between community influence and WSHI. Conclusions: The findings suggest that users? WSHI is influenced by many factors including altruism, self-efficacy, community influence, and intrinsic reward. Improving the social atmosphere of the platform is an effective method of encouraging users to share health information. UR - https://medinform.jmir.org/2021/3/e26265 UR - http://dx.doi.org/10.2196/26265 UR - http://www.ncbi.nlm.nih.gov/pubmed/33783364 ID - info:doi/10.2196/26265 ER - TY - JOUR AU - Zhang, Xianzuo AU - Chen, Xiaoxuan AU - Kourkoumelis, Nikolaos AU - Gao, Ran AU - Li, Guoyuan AU - Zhu, Chen PY - 2021/3/18 TI - A Social Media?Promoted Educational Community of Joint Replacement Patients Using the WeChat App: Survey Study JO - JMIR Mhealth Uhealth SP - e18763 VL - 9 IS - 3 KW - WeChat KW - social media KW - arthroplasty KW - perioperative education KW - patient satisfaction N2 - Background: Much effort has been made to optimize the results of total hip arthroplasty and total knee arthroplasty. With the rapid growth of social media use, mobile apps, such as WeChat, have been considered for improving outcomes and patient satisfaction after total hip arthroplasty and total knee arthroplasty. Objective: We aimed to evaluate the effectiveness of a WeChat-based community as an intervention for overall patient satisfaction. Methods: The study was conducted among discharged in-hospital patients who received hip or knee procedures in the First Affiliated Hospital of the University of Science and Technology of China from April 2019 to January 2020. An educational online social community was constructed with the WeChat app. Participants willing to join the community were enrolled in a WeChat group and received 3 months of intervention and follow-up. Those who were not willing to use the account were included in a control group and received routine publicity via telephone, mail, and brochures. The Danish Health and Medicine Authority patient satisfaction questionnaire was used to score perioperative patient education and overall satisfaction. The contents in the group chat were analyzed using natural language processing tools. Results: A total of 3428 patients were enrolled in the study, including 2292 in the WeChat group and 1236 in the control group. Participants in the WeChat group had higher overall satisfaction scores than those in the control group (mean 8.48, SD 1.12 vs mean 6.66, SD 1.80, P<.001). The difference between the two groups was significant for primary surgery based on subgroup stratification. To control confounding factors and explore the effects of WeChat participation as a mediating variable between perioperative patient education and overall satisfaction, hierarchical regression was utilized. An interpatient interaction model was found in the community group chat, and it contributed to overall satisfaction. Patients in the group with more interpatient interactions were more likely to have better overall satisfaction. Conclusions: The social media?promoted educational community using WeChat was effective among joint replacement patients. Provision of more perioperative education is associated with more active patient participation in the community and therefore more patient satisfaction in terms of the overall joint procedure. Community group chat could facilitate interactions among patients and contribute to overall satisfaction. UR - https://mhealth.jmir.org/2021/3/e18763 UR - http://dx.doi.org/10.2196/18763 UR - http://www.ncbi.nlm.nih.gov/pubmed/33734094 ID - info:doi/10.2196/18763 ER - TY - JOUR AU - Chew, Robert AU - Kery, Caroline AU - Baum, Laura AU - Bukowski, Thomas AU - Kim, Annice AU - Navarro, Mario PY - 2021/3/16 TI - Predicting Age Groups of Reddit Users Based on Posting Behavior and Metadata: Classification Model Development and Validation JO - JMIR Public Health Surveill SP - e25807 VL - 7 IS - 3 KW - Reddit KW - social media KW - age KW - machine learning KW - classification N2 - Background: Social media are important for monitoring perceptions of public health issues and for educating target audiences about health; however, limited information about the demographics of social media users makes it challenging to identify conversations among target audiences and limits how well social media can be used for public health surveillance and education outreach efforts. Certain social media platforms provide demographic information on followers of a user account, if given, but they are not always disclosed, and researchers have developed machine learning algorithms to predict social media users? demographic characteristics, mainly for Twitter. To date, there has been limited research on predicting the demographic characteristics of Reddit users. Objective: We aimed to develop a machine learning algorithm that predicts the age segment of Reddit users, as either adolescents or adults, based on publicly available data. Methods: This study was conducted between January and September 2020 using publicly available Reddit posts as input data. We manually labeled Reddit users? age by identifying and reviewing public posts in which Reddit users self-reported their age. We then collected sample posts, comments, and metadata for the labeled user accounts and created variables to capture linguistic patterns, posting behavior, and account details that would distinguish the adolescent age group (aged 13 to 20 years) from the adult age group (aged 21 to 54 years). We split the data into training (n=1660) and test sets (n=415) and performed 5-fold cross validation on the training set to select hyperparameters and perform feature selection. We ran multiple classification algorithms and tested the performance of the models (precision, recall, F1 score) in predicting the age segments of the users in the labeled data. To evaluate associations between each feature and the outcome, we calculated means and confidence intervals and compared the two age groups, with 2-sample t tests, for each transformed model feature. Results: The gradient boosted trees classifier performed the best, with an F1 score of 0.78. The test set precision and recall scores were 0.79 and 0.89, respectively, for the adolescent group (n=254) and 0.78 and 0.63, respectively, for the adult group (n=161). The most important feature in the model was the number of sentences per comment (permutation score: mean 0.100, SD 0.004). Members of the adolescent age group tended to have created accounts more recently, have higher proportions of submissions and comments in the r/teenagers subreddit, and post more in subreddits with higher subscriber counts than those in the adult group. Conclusions: We created a Reddit age prediction algorithm with competitive accuracy using publicly available data, suggesting machine learning methods can help public health agencies identify age-related target audiences on Reddit. Our results also suggest that there are characteristics of Reddit users? posting behavior, linguistic patterns, and account features that distinguish adolescents from adults. UR - https://publichealth.jmir.org/2021/3/e25807 UR - http://dx.doi.org/10.2196/25807 UR - http://www.ncbi.nlm.nih.gov/pubmed/33724195 ID - info:doi/10.2196/25807 ER - TY - JOUR AU - Kim, Jina AU - Lee, Daeun AU - Park, Eunil PY - 2021/3/8 TI - Machine Learning for Mental Health in Social Media: Bibliometric Study JO - J Med Internet Res SP - e24870 VL - 23 IS - 3 KW - bibliometric analysis KW - machine learning KW - mental health KW - social media N2 - Background: Social media platforms provide an easily accessible and time-saving communication approach for individuals with mental disorders compared to face-to-face meetings with medical providers. Recently, machine learning (ML)-based mental health exploration using large-scale social media data has attracted significant attention. Objective: We aimed to provide a bibliometric analysis and discussion on research trends of ML for mental health in social media. Methods: Publications addressing social media and ML in the field of mental health were retrieved from the Scopus and Web of Science databases. We analyzed the publication distribution to measure productivity on sources, countries, institutions, authors, and research subjects, and visualized the trends in this field using a keyword co-occurrence network. The research methodologies of previous studies with high citations are also thoroughly described. Results: We obtained a total of 565 relevant papers published from 2015 to 2020. In the last 5 years, the number of publications has demonstrated continuous growth with Lecture Notes in Computer Science and Journal of Medical Internet Research as the two most productive sources based on Scopus and Web of Science records. In addition, notable methodological approaches with data resources presented in high-ranking publications were investigated. Conclusions: The results of this study highlight continuous growth in this research area. Moreover, we retrieved three main discussion points from a comprehensive overview of highly cited publications that provide new in-depth directions for both researchers and practitioners. UR - https://www.jmir.org/2021/3/e24870 UR - http://dx.doi.org/10.2196/24870 UR - http://www.ncbi.nlm.nih.gov/pubmed/33683209 ID - info:doi/10.2196/24870 ER - TY - JOUR AU - Lustig, Andrew AU - Brookes, Gavin AU - Hunt, Daniel PY - 2021/3/5 TI - Linguistic Analysis of Online Communication About a Novel Persecutory Belief System (Gangstalking): Mixed Methods Study JO - J Med Internet Res SP - e25722 VL - 23 IS - 3 KW - internet KW - discourse analysis KW - psychosis KW - delusions KW - linguistics KW - language KW - online discourse KW - corpus linguistics KW - computer mediated communication KW - schizophrenia KW - eHealth N2 - Background: Gangstalking is a novel persecutory belief system whereby those affected believe they are being followed, stalked, and harassed by a large number of people, often numbering in the thousands. The harassment is experienced as an accretion of innumerable individually benign acts such as people clearing their throat, muttering under their breath, or giving dirty looks as they pass on the street. Individuals affected by this belief system congregate in online fora to seek support, share experiences, and interact with other like-minded individuals. Such people identify themselves as targeted individuals. Objective: The objective of the study was to characterize the linguistic and rhetorical practices used by contributors to the gangstalking forum to construct, develop, and contest the gangstalking belief system. Methods: This mixed methods study employed corpus linguistics, which involves using computational techniques to examine recurring linguistic patterns in large, digitized bodies of authentic language data. Discourse analysis is an approach to text analysis which focuses on the ways in which linguistic choices made by text creators contribute to particular functions and representations. We assembled a 225,000-word corpus of postings on a gangstalking support forum. We analyzed these data using keyword analysis, collocation analysis, and manual examination of concordances to identify discursive and rhetorical practices among self-identified targeted individuals. Results: The gangstalking forum served as a site of discursive contest between 2 opposing worldviews. One is that gangstalking is a widespread, insidious, and centrally coordinated system of persecution employing community members, figures of authority, and state actors. This was the dominant discourse in the study corpus. The opposing view is a medicalized discourse supporting gangstalking as a form of mental disorder. Contributors used linguistic practices such as presupposition, nominalization, and the use of specialized jargon to construct gangstalking as real and external to the individual affected. Although contributors generally rejected the notion that they were affected by mental disorder, in some instances, they did label others in the forum as impacted/affected by mental illness if their accounts if their accounts were deemed to be too extreme or bizarre. Those affected demonstrated a concern with accumulating evidence to prove their position to incredulous others. Conclusions: The study found that contributors to the study corpus accomplished a number of tasks. They used linguistic practices to co-construct an internally coherent and systematized persecutory belief system. They advanced a position that gangstalking is real and contested the medicalizing discourse that gangstalking is a form of mental disorder. They supported one another by sharing similar experiences and providing encouragement and advice. Finally, they commiserated over the challenges of proving the existence of gangstalking. UR - https://www.jmir.org/2021/3/e25722 UR - http://dx.doi.org/10.2196/25722 UR - http://www.ncbi.nlm.nih.gov/pubmed/33666560 ID - info:doi/10.2196/25722 ER - TY - JOUR AU - Myers, L. Amanda AU - Collins-Pisano, Caroline AU - Ferron, C. Joelle AU - Fortuna, L. Karen PY - 2021/3/4 TI - Feasibility and Preliminary Effectiveness of a Peer-Developed and Virtually Delivered Community Mental Health Training Program (Emotional CPR): Pre-Post Study JO - J Particip Med SP - e25867 VL - 13 IS - 1 KW - Emotional CPR (eCPR) KW - peer support KW - peer-delivered training KW - mental health KW - community mental health N2 - Background: The COVID-19 pandemic has led to a global mental health crisis, highlighting the need for a focus on community-wide mental health. Emotional CPR (eCPR) is a program and practice developed by persons with a lived experience of recovery from trauma or mental health challenges to train community members from diverse backgrounds to support others through mental health crises. eCPR trainers have found that eCPR may promote feelings of belonging by increasing supportive behaviors toward individuals with mental health problems. Thus, clinical outcomes related to positive and negative affect would improve along with feelings of loneliness. Objective: This study examined the feasibility and preliminary effectiveness of eCPR. Methods: We employed a pre-post design with 151 individuals, including peer support specialists, service users, clinicians, family members, and nonprofit leaders, who participated in virtual eCPR trainings between April 20, 2020, and July 31, 2020. Instruments were administered before and after training and included the Herth Hope Scale; Empowerment Scale; Flourishing Scale (perceived capacity to support individuals); Mindful Attention Awareness Scale; Active-Empathic Listening Scale (supportive behaviors toward individuals with mental health challenges); Social Connectedness Scale (feelings of belonging and connection with others); Positive and Negative Affect Schedule; and University of California, Los Angeles 3-item Loneliness Scale (symptoms and emotions). The eCPR fidelity scale was used to determine the feasibility of delivering eCPR with fidelity. We conducted 2-tailed paired t tests to examine posttraining improvements related to each scale. Additionally, data were stratified to identify pre-post differences by role. Results: Findings indicate that it is feasible for people with a lived experience of a mental health condition to develop a program and train people to deliver eCPR with fidelity. Statistically significant pre-post changes were found related to one?s ability to identify emotions, support others in distress, communicate nonverbally, share emotions, and take care of oneself, as well as to one?s feelings of social connectedness, self-perceived flourishing, and positive affect (P?.05). Findings indicated promising evidence of pre-post improvements (not statistically significant) related to loneliness, empowerment, active-empathetic listening, mindfulness awareness, and hope. Nonprofit leaders and workers demonstrated the greatest improvements related to loneliness, social connectedness, empathic listening, and flourishing. Peer support specialists demonstrated the greatest improvements related to positive affect, and clinicians demonstrated the greatest improvements related to mindfulness awareness. Conclusions: Promising evidence indicates that eCPR, a peer-developed and peer-delivered program, may increase feelings of belonging while increasing supportive behaviors toward individuals with mental health problems and improving clinical outcomes related to positive and negative affect and feelings of loneliness. UR - https://jopm.jmir.org/2021/1/e25867 UR - http://dx.doi.org/10.2196/25867 UR - http://www.ncbi.nlm.nih.gov/pubmed/33661129 ID - info:doi/10.2196/25867 ER - TY - JOUR AU - Mbao, Mbita AU - Collins-Pisano, Caroline AU - Fortuna, Karen PY - 2021/3/2 TI - Older Adult Peer Support Specialists? Age-Related Contributions to an Integrated Medical and Psychiatric Self-Management Intervention: Qualitative Study of Text Message Exchanges JO - JMIR Form Res SP - e22950 VL - 5 IS - 3 KW - older adults KW - peer support KW - self-management KW - mobile technology N2 - Background: Middle-aged and older adults with mental health conditions have a high likelihood of experiencing comorbid physical health conditions, premature nursing home admissions, and early death compared with the general population of adults aged 50 years or above. An emerging workforce of peer support specialists aged 50 years or above or ?older adult peer support specialists? is increasingly using technology to deliver peer support services to address both the mental health and physical health needs of middle-aged and older adults with a diagnosis of a serious mental illness. Objective: This exploratory qualitative study examined older adult peer support specialists? text message exchanges with middle-aged and older adults with a diagnosis of a serious mental illness and their nonmanualized age-related contributions to a standardized integrated medical and psychiatric self-management intervention. Methods: Older adult peer support specialists exchanged text messages with middle-aged and older adults with a diagnosis of a serious mental illness as part of a 12-week standardized integrated medical and psychiatric self-management smartphone intervention. Text message exchanges between older adult peer support specialists (n=3) and people with serious mental illnesses (n=8) were examined (mean age 68.8 years, SD 4.9 years). A total of 356 text messages were sent between older adult peer support specialists and service users with a diagnosis of a serious mental illness. Older adult peer support specialists sent text messages to older participants? smartphones between 8 AM and 10 PM on weekdays and weekends. Results: Five themes emerged from text message exchanges related to older adult peer support specialists? age-related contributions to integrated self-management, including (1) using technology to simultaneously manage mental health and physical health issues; (2) realizing new coping skills in late life; (3) sharing roles as parents and grandparents; (4) wisdom; and (5) sharing lived experience of difficulties with normal age-related changes (emerging). Conclusions: Older adult peer support specialists? lived experience of aging successfully with a mental health challenge may offer an age-related form of peer support that may have implications for promoting successful aging in older adults with a serious mental illness. UR - https://formative.jmir.org/2021/3/e22950 UR - http://dx.doi.org/10.2196/22950 UR - http://www.ncbi.nlm.nih.gov/pubmed/33650979 ID - info:doi/10.2196/22950 ER - TY - JOUR AU - Chang, Leanne AU - Chattopadhyay, Kaushik AU - Li, Jialin AU - Xu, Miao AU - Li, Li PY - 2021/3/1 TI - Interplay of Support, Comparison, and Surveillance in Social Media Weight Management Interventions: Qualitative Study JO - JMIR Mhealth Uhealth SP - e19239 VL - 9 IS - 3 KW - obesity KW - social comparison KW - social media KW - social support KW - surveillance KW - weight control N2 - Background: There has been a significant increase in the trend of using social media as a platform to deliver weight management interventions. This illustrates a need to develop a holistic understanding of doctor-patient communication and peer-to-peer communication in social media interventions and to determine their influences on weight management for people with overweight or obesity. Such studies will highlight how social media can be more effectively integrated into weight management programs to enhance individuals? short-term and long-term weight management behaviors. Objective: The aim of this study was to examine patients? experiences with doctor-patient communication and peer interactions in a social media?based (WeChat) weight management program, and to describe the interplay of three social influence factors?social support, social comparison, and surveillance?in their weight control practices. The program, designed and implemented by the research team located in a tertiary referral hospital in a southeastern province in China, included both diet and physical activity components that targeted people with overweight or obesity. Methods: We conducted in-depth interviews with 32 program participants of different ages (mean 35.6, SD 7.7 years), gender (18 women), duration of program membership (mean 1.4 years), and weight loss outcomes (54% weight loss to 9% weight gain). All interview data were audio-recorded, transcribed, and translated using the translation-backtranslation technique. Nvivo software was used to facilitate the coding process. Results: Results of thematic analysis indicated the distinct functions of professionally led support and peer support. Professional support was presented in the form of knowledge infusion, efficacy enhancement, and provision of timely feedback. Peer support fostered empathy and sense of belonging, and had a mutually reinforcing relationship with peer comparison and peer-based surveillance. Peer comparison enhanced motivation and positive competition. However, it also reinforced negative group norms, and resulted in downturns in reference standards and collective inactivity. Social media surveillance prompted participants? reactions to the gaze from medical professionals and peers that could be encouraging or inhibiting. Surveillance enhanced vigilance with weight control norms; however, its influence weakened when participants chose to fake weight data and turn off notifications. Findings from this study illustrated the interrelated and fluctuating influences of support, comparison, and surveillance. Conclusions: The interactive traits of social media eased the practices of social support and social comparison, and created new forms of surveillance. This study contributes to an in-depth understanding of social media influences on individuals? weight control behaviors. Practical implications of the study concern improved strategies for maintaining the positive dynamics of social media interactions and preventing negative resistance to surveillance technology. Trial Registration: Chinese Clinical Trial Registry ChiCTR1900025861; http://www.chictr.org.cn/showprojen.aspx?proj=42497 UR - https://mhealth.jmir.org/2021/3/e19239 UR - http://dx.doi.org/10.2196/19239 UR - http://www.ncbi.nlm.nih.gov/pubmed/33646130 ID - info:doi/10.2196/19239 ER - TY - JOUR AU - Kaveladze, Benjamin AU - Chang, Katherine AU - Siev, Jedidiah AU - Schueller, M. Stephen PY - 2021/2/17 TI - Impact of the COVID-19 Pandemic on Online Obsessive-Compulsive Disorder Support Community Members: Survey Study JO - JMIR Ment Health SP - e26715 VL - 8 IS - 2 KW - obsessive-compulsive disorder KW - COVID-19 pandemic KW - online support communities KW - mental health N2 - Background: People with obsessive-compulsive disorder (OCD) have faced unique challenges during the COVID-19 pandemic. Research from the first two months of the pandemic suggests that a small proportion of people with OCD experienced worsening in their OCD symptoms since the pandemic began, whereas the rest experienced either no change or an improvement in their symptoms. However, as society-level factors relating to the pandemic have evolved, the effects of the pandemic on people with OCD have likely changed as well, in complex and population-specific ways. Therefore, this study contributes to a growing body of knowledge on the impact of the COVID-19 pandemic on people and demonstrates how differences across studies might emerge when studying specific populations at specific timepoints. Objective: This study aimed to assess how members of online OCD support communities felt the COVID-19 pandemic had affected their OCD symptoms, around 3 months after the pandemic began. Methods: We recruited participants from online OCD support communities for our brief survey. Participants indicated how much they felt their OCD symptoms had changed since the pandemic began and how much they felt that having OCD was making it harder to deal with the pandemic. Results: We collected survey data from June through August 2020 and received a total of 196 responses, some of which were partial responses. Among the nonmissing data, 65.9% (108/164) of the participants were from the United States and 90.5% (152/168) had been subjected to a stay-at-home order. In all, 92.9% (182/196) of the participants said they experienced worsening of their OCD symptoms since the pandemic began, although the extent to which their symptoms worsened differed across dimensions of OCD; notably, symmetry and completeness symptoms were less likely to have worsened than others. Moreover, 95.5% (171/179) of the participants felt that having OCD made it difficult to deal with the pandemic. Conclusions: Our study of online OCD support community members found a much higher rate of OCD symptom worsening than did other studies on people with OCD conducted during the current COVID-19 pandemic. Factors such as quarantine length, location, overlapping society-level challenges, and differing measurement and sampling choices may help to explain this difference across studies. UR - http://mental.jmir.org/2021/2/e26715/ UR - http://dx.doi.org/10.2196/26715 UR - http://www.ncbi.nlm.nih.gov/pubmed/33595449 ID - info:doi/10.2196/26715 ER - TY - JOUR AU - Hirvonen, Maija AU - Purcell, Carrie AU - Elliott, Lawrie AU - Bailey, V. Julia AU - Simpson, Anne Sharon AU - McDaid, Lisa AU - Moore, Laurence AU - Mitchell, Rebecca Kirstin AU - PY - 2021/2/16 TI - Peer-to-Peer Sharing of Social Media Messages on Sexual Health in a School-Based Intervention: Opportunities and Challenges Identified in the STASH Feasibility Trial JO - J Med Internet Res SP - e20898 VL - 23 IS - 2 KW - social media KW - sexual health KW - sex education KW - peer education KW - process evaluation KW - school KW - feasibility studies KW - adolescent KW - social networking N2 - Background: There is a strong interest in the use of social media to spread positive sexual health messages through social networks of young people. However, research suggests that this potential may be limited by a reluctance to be visibly associated with sexual health content on the web or social media and by the lack of trust in the veracity of peer sources. Objective: The aim of this study was to investigate opportunities and challenges of using social media to facilitate peer-to-peer sharing of sexual health messages within the context of STASH (Sexually Transmitted Infections and Sexual Health), a secondary school-based and peer-led sexual health intervention. Methods: Following training, and as a part of their role, student-nominated peer supporters (aged 14-16 years) invited school friends to trainer-monitored, private Facebook groups. Peer supporters posted curated educational sex and relationship content within these groups. Data came from a feasibility study of the STASH intervention in 6 UK schools. To understand student experiences of the social media component, we used data from 11 semistructured paired and group interviews with peer supporters and their friends (collectively termed students; n=42, aged 14-16 years), a web-based postintervention questionnaire administered to peer supporters (n=88), and baseline and follow-up questionnaires administered to students in the intervention year group (n=680 and n=603, respectively). We carried out a thematic analysis of qualitative data and a descriptive analysis of quantitative data. Results: Message sharing by peer supporters was hindered by variable engagement with Facebook. The trainer-monitored and private Facebook groups were acceptable to student members (peer supporters and their friends) and reassuring to peer supporters but led to engagement that ran parallel to?rather than embedded in?their routine social media use. The offline context of a school-based intervention helped legitimate and augment Facebook posts; however, even where friends were receptive to STASH messages, they did not necessarily engage visibly on social media. Preferences for content design varied; however, humor, color, and text brevity were important. Preferences for social media versus offline message sharing varied. Conclusions: Invitation-only social media groups formed around peer supporters? existing friendship networks hold potential for diffusing messages in peer-based sexual health interventions. Ideally, interactive opportunities should not be limited to single social media platforms and should run alongside offline conversations. There are tensions between offering young people autonomy to engage flexibly and authentically and the need for adult oversight of activities for information accuracy and safeguarding. UR - http://www.jmir.org/2021/2/e20898/ UR - http://dx.doi.org/10.2196/20898 UR - http://www.ncbi.nlm.nih.gov/pubmed/33591287 ID - info:doi/10.2196/20898 ER - TY - JOUR AU - Johansson, Victoria AU - Islind, Sigridur Anna AU - Lindroth, Tomas AU - Angenete, Eva AU - Gellerstedt, Martin PY - 2021/2/9 TI - Online Communities as a Driver for Patient Empowerment: Systematic Review JO - J Med Internet Res SP - e19910 VL - 23 IS - 2 KW - patient empowerment KW - online community KW - person-centered care KW - eHealth KW - systematic review N2 - Background: The use of online resources has changed how people manage health care processes. Patients seek information about health conditions, guidance in treatment, and support from peers online, complementary to traditional health care trajectories. Online communities have the potential to contribute to the quality of care by increasing patient empowerment; however, there is a gap in research regarding in what way online communities contribute to patient empowerment. Objective: We synthesized research regarding how online communities contribute to patient empowerment to address the research question ?In what ways can participation in online communities support patient empowerment?? by studying how patient empowerment is operationalized in different studies. The definition of patient empowerment used in this paper is enablement for people to develop mastery over actions and control over decisions that influence their lives. The mastery is both through processes and outcomes of the development. Methods: A systematic review was conducted by searching in the following databases: Scopus, ACM Digital Library, EBSCO (CINAHL and MEDLINE), PubMed, and Web of Science. In total, there were 1187 papers after excluding duplicates, and through selection processes using an analytical framework with definitions of patient empowerment and related concepts, 33 peer-reviewed papers were included. Results: Findings indicated that online communities support patient empowerment both as a process and as outcomes of these processes. Additionally, it was seen as a complement to traditional health care and encouragement for health care professionals to have a more positive attitude toward patients? usage. There was a mix between deductive (19/33, 58%), inductive (11/33, 33%), and a mixed approach (3/33, 9%) of studying patient empowerment in various forms. The online communities in most papers (21/33, 64%) were well-established and represented patients? initiatives. Conclusions: There is a need to include professionals' perspectives regarding how health care can embrace patient empowerment through online communities. This systematic review's main contribution is the proposal of a new framework and conceptualization of how patient empowerment in online communities can be understood from different hierarchical levels. UR - http://www.jmir.org/2021/2/e19910/ UR - http://dx.doi.org/10.2196/19910 UR - http://www.ncbi.nlm.nih.gov/pubmed/33560233 ID - info:doi/10.2196/19910 ER - TY - JOUR AU - Dang, Yuanyuan AU - Guo, Shanshan AU - Guo, Xitong AU - Wang, Mohan AU - Xie, Kexin PY - 2021/2/8 TI - Privacy Concerns About Health Information Disclosure in Mobile Health: Questionnaire Study Investigating the Moderation Effect of Social Support JO - JMIR Mhealth Uhealth SP - e19594 VL - 9 IS - 2 KW - mobile health KW - privacy concern KW - disclosure benefit KW - health information disclosure intention N2 - Background: Mobile health (mHealth) provides a new opportunity for disease prediction and patient health self-management. However, privacy problems in mHealth have drawn significant attention to patients? online health information disclosure and to the possibility that privacy concerns may hinder mHealth development. Objective: Privacy calculus theory (PCT) has been widely used to understand personal information disclosure behaviors with the basic assumption of a rational and linear decision-making process. However, cognitive behavior processes are complex and mutual. In an attempt to gain a fuller understanding of information disclosure behavior, we further optimize a PCT-based information disclosure model by identifying the mutual relationship between costs (privacy concerns) and benefits. Social support, which has been proven to be a distinct and significant disclosure benefit of mHealth, was chosen as the representative benefit of information disclosure. Methods: We examine a structural equation model that incorporates privacy concerns, health information disclosure intention in mHealth, and social support from mHealth, all at the individual level. Results: A validated questionnaire was completed by 253 randomly selected participants. The result indicated that perceived health information sensitivity positively enhances patients? privacy concern (beta path coefficient 0.505, P<.001), and higher privacy concern levels will decrease their health information disclosure intention (beta path coefficient ?0.338, P<.001). Various individual characteristics influence perceived health information sensitivity in different ways. One dimension of social support, informational support, negatively moderates the effect of the relationship between perceived health information sensitivity and privacy concerns (beta path coefficient ?0.171, P=.092) and the effect of the relationship between privacy concerns and health information disclosure intention (beta path coefficient ?0.105, P=.092). However, another dimension, emotional support, has no direct moderation effect on the relationship between privacy concerns and health information disclosure intention. Conclusions: The results indicate that social support can be regarded as a disutility reducer. That is, on the one hand, it reduces patients? privacy concerns; on the other hand, it also reduces the negative impact of privacy concerns on information disclosure intention. Moreover, the moderation effect of social support is partially supported. Informational support, one dimension of social support, is significant (beta path coefficient ?0.171, P=.092), while the other dimension, emotional support, is not significant (beta path coefficient ?0.137, P=.146), in mHealth. Furthermore, the results are different among patients with different individual characteristics. This study also provides specific theoretical and practical implications to enhance the development of mHealth. UR - https://mhealth.jmir.org/2021/2/e19594 UR - http://dx.doi.org/10.2196/19594 UR - http://www.ncbi.nlm.nih.gov/pubmed/33555266 ID - info:doi/10.2196/19594 ER - TY - JOUR AU - Liang, Stella Ou AU - Chen, Yunan AU - Bennett, S. David AU - Yang, C. Christopher PY - 2021/2/4 TI - Identifying Self-Management Support Needs for Pregnant Women With Opioid Misuse in Online Health Communities: Mixed Methods Analysis of Web Posts JO - J Med Internet Res SP - e18296 VL - 23 IS - 2 KW - self-management KW - online health community KW - opioid use disorder KW - pregnancy N2 - Background: The current opioid crisis in the United States impacts broad population groups, including pregnant women. Opioid use during pregnancy can affect the health and wellness of both mothers and their infants. Understanding women?s efforts to self-manage opioid use or misuse in pregnancy is needed to identify intervention points for improving maternal outcomes. Objective: This study aims to identify the characteristics of women in an online health community (OHC) with opioid use or misuse during pregnancy and the self-management support needs of these mothers. Methods: A total of 200 web posts by pregnant women with opioid use participating in an OHC were double coded. Concepts and their thematic connections were identified through an inductive process until theoretical saturation was reached. Statistical tests were performed to identify patterns. Results: The majority of pregnant women (150/200, 75.0%) in the OHC exhibited signs of misuse, and 62.5% (125/200) of the participants were either contemplating or pursuing dosage reduction. Self-managed withdrawal was more common (P<.001) than professional treatment among the population. A total of 5 themes of self-management support needs were identified as women sought information about the potential adverse effects of gestational opioid use, protocols for self-managed withdrawal, pain management safety during pregnancy, hospital policies and legal procedures related to child protection, and strategies for navigating offline support systems. In addition, 58.5% (117/200) of the pregnant women expressed negative emotions, of whom only 10.2% (12/117) sought to address their emotional needs with the help of the OHC. Conclusions: OHCs provide vital self-management support for pregnant women with opioid use or misuse. Women pursuing self-managed dosage reduction are prone to misinformation and repeated relapses, which can result in extreme measures to avoid testing positive for drug use at labor. The study findings provide evidence for public policy considerations, including universal screening of substance use for pregnant women, emphasis on treatment rather than legal punishment, and further expansion of the Drug Addiction Treatment Act waiver training program. The improvement of web-based platforms that can organize geo-relevant information, dispense clinically validated withdrawal schedules, and offer structured peer support is envisioned for harm reduction among pregnant women who opt for self-management of opioid misuse. UR - https://www.jmir.org/2021/2/e18296 UR - http://dx.doi.org/10.2196/18296 UR - http://www.ncbi.nlm.nih.gov/pubmed/33538695 ID - info:doi/10.2196/18296 ER - TY - JOUR AU - Kruzan, Payne Kaylee AU - Whitlock, Janis AU - Bazarova, N. Natalya PY - 2021/1/28 TI - Examining the Relationship Between the Use of a Mobile Peer-Support App and Self-Injury Outcomes: Longitudinal Mixed Methods Study JO - JMIR Ment Health SP - e21854 VL - 8 IS - 1 KW - self-injury KW - mobile apps KW - peer support KW - mHealth N2 - Background: Many individuals who self-injure seek support and information through online communities and mobile peer-support apps. Although researchers have identified risks and benefits of participation, empirical work linking participation in these web-based spaces to self-injury behaviors and thoughts is limited. Objective: This study aims to investigate the relationship between behavioral and linguistic traces on a mobile peer support app and self-injury outcomes. Methods: Natural use data and web-based surveys (N=697) assessing self-injury outcomes were collected from 268 users (aged 13-38 years; median 19; 149/268, 55.6% female) of a mobile peer-support app for 4 months. Participants were identified as having posted self-injury content using an internal classifier. Natural log data was used to predict self-injury outcomes in a series of multilevel logistic and linear regressions. Results: Greater engagement on a mobile peer-support app was associated with a decreased likelihood of self-injury thoughts (odds ratio [OR] 0.25, 95% CI 0.09-0.73) and fewer intentions to self-injure (b=?0.37, SE 0.09), whereas posting triggering content was associated with an increased likelihood of engaging in behaviors (OR 5.37, 95% CI 1.25-23.05) and having self-injury thoughts (OR 17.87, 95% CI 1.64-194.15). Moreover, viewing triggering content was related to both a greater ability to resist (b=1.39, SE 0.66) and a greater intention to self-injure (b=1.50, SE 0.06). Conclusions: To our knowledge, this is the first study to connect naturally occurring log data to survey data assessing self-injury outcomes over time. This work provides empirical support for the relationship between participation in online forums and self-injury outcomes, and it articulates mechanisms contributing to this relationship. UR - http://mental.jmir.org/2021/1/e21854/ UR - http://dx.doi.org/10.2196/21854 UR - http://www.ncbi.nlm.nih.gov/pubmed/33507154 ID - info:doi/10.2196/21854 ER - TY - JOUR AU - Pérez-Aldana, A. Carlos AU - Lewinski, A. Allison AU - Johnson, M. Constance AU - Vorderstrasse, A. Allison AU - Myneni, Sahiti PY - 2021/1/25 TI - Exchanges in a Virtual Environment for Diabetes Self-Management Education and Support: Social Network Analysis JO - JMIR Diabetes SP - e21611 VL - 6 IS - 1 KW - type 2 diabetes KW - diabetes education KW - self-management KW - social support KW - virtual environments KW - social network analysis N2 - Background: Diabetes remains a major health problem in the United States, affecting an estimated 10.5% of the population. Diabetes self-management interventions improve diabetes knowledge, self-management behaviors, and clinical outcomes. Widespread internet connectivity facilitates the use of eHealth interventions, which positively impacts knowledge, social support, and clinical and behavioral outcomes. In particular, diabetes interventions based on virtual environments have the potential to improve diabetes self-efficacy and support, while being highly feasible and usable. However, little is known about the patterns of social interactions and support taking place within type 2 diabetes?specific virtual communities. Objective: The objective of this study was to examine social support exchanges from a type 2 diabetes self-management education and support intervention that was delivered via a virtual environment. Methods: Data comprised virtual environment?mediated synchronous interactions among participants and between participants and providers from an intervention for type 2 diabetes self-management education and support. Network data derived from such social interactions were used to create networks to analyze patterns of social support exchange with the lens of social network analysis. Additionally, network correlations were used to explore associations between social support networks. Results: The findings revealed structural differences between support networks, as well as key network characteristics of supportive interactions facilitated by the intervention. Emotional and appraisal support networks are the larger, most centralized, and most active networks, suggesting that virtual communities can be good sources for these types of support. In addition, appraisal and instrumental support networks are more connected, suggesting that members of virtual communities are more likely to engage in larger group interactions where these types of support can be exchanged. Lastly, network correlations suggest that participants who exchange emotional support are likely to exchange appraisal or instrumental support, and participants who exchange appraisal support are likely to exchange instrumental support. Conclusions: Social interaction patterns from disease-specific virtual environments can be studied using a social network analysis approach to better understand the exchange of social support. Network data can provide valuable insights into the design of novel and effective eHealth interventions given the unique opportunity virtual environments have facilitating realistic environments that are effective and sustainable, where social interactions can be leveraged to achieve diverse health goals. UR - http://diabetes.jmir.org/2021/1/e21611/ UR - http://dx.doi.org/10.2196/21611 UR - http://www.ncbi.nlm.nih.gov/pubmed/33492236 ID - info:doi/10.2196/21611 ER - TY - JOUR AU - Hwang, Juwon AU - Toma, L. Catalina AU - Chen, Junhan AU - Shah, V. Dhavan AU - Gustafson, David AU - Mares, Marie-Louise PY - 2021/1/13 TI - Effects of Web-Based Social Connectedness on Older Adults? Depressive Symptoms: A Two-Wave Cross-Lagged Panel Study JO - J Med Internet Res SP - e21275 VL - 23 IS - 1 KW - depressive symptoms KW - older adults KW - web-based intervention KW - online social support KW - patient health questionnaire KW - longitudinal survey KW - mobile phone N2 - Background: Depressive symptoms are the most prevalent mental health concern among older adults (possibly heightened during the COVID-19 pandemic), which raises questions about how such symptoms can be lowered in this population. Existing research shows that offline social connectedness is a protective factor against depression in older adults; however, it is unknown whether web-based social connectedness can have similar effects. Objective: This study investigates whether social connectedness on a support website protects older adults against depressive symptoms over the course of a year, above and beyond the protective effect of offline social connectedness. The secondary aim is to determine whether older adults with increased depressive symptoms are more likely to engage in social connectedness on this website. Thus, we examine depressive symptoms as both an outcome and predictor of web-based social connectedness to fully understand the chain of causality among these variables. Finally, we compare web-based social connectedness with offline social connectedness in their ability to lower depressive symptoms among older adults. Methods: A total of 197 adults aged 65 years or older were given access to a social support website, where they were able to communicate with each other via a discussion forum for a year. Participants? social connectedness on the web-based platform, conceptualized as message production and consumption, was measured using behavioral log data as the number of messages participants wrote and read, respectively, during the first 6 months (t1) and the following 6 months (t2) of the study. Participants self-reported their offline social connectedness as the number of people in their support networks, and they reported their depressive symptoms using the Patient Health Questionnaire-8 both at baseline (t1) and at 12-month follow-up (t2). To ascertain the flow of causality between these variables, we employed a cross-lagged panel design, in which all variables were measured at t1 and t2. Results: After controlling for the effect of offline support networks at t1, web-based message consumption at t1 decreased older adults? depressive symptoms at t2 (?=?.11; P=.02), but web-based message production at t1 did not impact t2 depressive symptoms (?=.12; P=.34). Web-based message consumption had a larger effect (?=?.11; P=.02) than offline support networks (?=?.08; P=.03) in reducing older adults? depressive symptoms over time. Higher baseline depressive symptoms did not predict increased web-based message consumption (?=.12; P=.36) or production (?=.02; P=.43) over time. Conclusions: The more messages older adults read on the web-based forum for the first 6 months of the study, the less depressed they felt at the 1-year follow-up, above and beyond the availability of offline support networks at baseline. This pinpoints the substantial potential of web-based communication to combat depressive symptoms in this vulnerable population. International Registered Report Identifier (IRRID): RR2-10.1186/s13063-015-0713-2 UR - http://www.jmir.org/2021/1/e21275/ UR - http://dx.doi.org/10.2196/21275 UR - http://www.ncbi.nlm.nih.gov/pubmed/33439143 ID - info:doi/10.2196/21275 ER - TY - JOUR AU - Mizokami-Stout, Kara AU - Choi, Hwajung AU - Richardson, R. Caroline AU - Piatt, Gretchen AU - Heisler, Michele PY - 2021/1/11 TI - Diabetes Distress and Glycemic Control in Type 2 Diabetes: Mediator and Moderator Analysis of a Peer Support Intervention JO - JMIR Diabetes SP - e21400 VL - 6 IS - 1 KW - diabetes mellitus KW - diabetes distress KW - health behavior KW - peer support N2 - Background: High levels of psychosocial distress are correlated with worse glycemic control as measured by glycosylated hemoglobin levels (HbA1c). Some interventions specifically targeting diabetes distress have been shown to lead to lower HbA1c values, but the underlying mechanisms mediating this improvement are unknown. In addition, while type 2 diabetes mellitus (T2D) disproportionately affects low-income racial and ethnic minority populations, it is unclear whether interventions targeting distress are differentially effective depending on participants? baseline characteristics. Objective: Our objective was to evaluate the mediators and moderators that would inform interventions for improvements in both glycemic control and diabetes distress. Methods: Our target population included 290 Veterans Affairs patients with T2D enrolled in a comparative effectiveness trial of peer support alone versus technology-enhanced peer support with primary and secondary outcomes including HbA1c and diabetes distress at 6 months. Participants in both arms had significant improvements in both HbA1c and diabetes distress at 6 months, so the arms were pooled for all analyses. Goal setting, perceived competence, intrinsic motivation, and decisional conflict were evaluated as possible mediators of improvements in both diabetes distress and HbA1c. Baseline patient characteristics evaluated as potential moderators included age, race, highest level of education attained, employment status, income, health literacy, duration of diabetes, insulin use, baseline HbA1c, diabetes-specific social support, and depression. Results: Among the primarily African American male veterans with T2D, the median age was 63 (SD 10.2) years with a baseline mean HbA1c of 9.1% (SD 1.7%). Improvements in diabetes distress were correlated with improvements in HbA1c in both bivariate and multivariable models adjusted for age, race, health literacy, duration of diabetes, and baseline HbA1c. Improved goal setting and perceived competence were found to mediate both the improvements in diabetes distress and in HbA1c, together accounting for 20% of the effect of diabetes distress on change in HbA1c. Race and insulin use were found to be significant moderators of improvements in diabetes distress and improved HbA1c. Conclusions: Prior studies have demonstrated that some but not all interventions that improve diabetes distress can lead to improved glycemic control. This study found that both improved goal setting and perceived competence over the course of the peer support intervention mediated both improved diabetes distress and improved HbA1c. This suggests that future interventions targeting diabetes distress should also incorporate elements to increase goal setting and perceived competence. The intervention effect of improvements in diabetes distress on glycemic control in peer support may be more pronounced among White and insulin-dependent veterans. Additional research is needed to understand how to better target diabetes distress and glycemic control in other vulnerable populations. UR - https://diabetes.jmir.org/2021/1/e21400 UR - http://dx.doi.org/10.2196/21400 UR - http://www.ncbi.nlm.nih.gov/pubmed/33427667 ID - info:doi/10.2196/21400 ER - TY - JOUR AU - Leung, W. Yvonne AU - Wouterloot, Elise AU - Adikari, Achini AU - Hirst, Graeme AU - de Silva, Daswin AU - Wong, Jiahui AU - Bender, L. Jacqueline AU - Gancarz, Mathew AU - Gratzer, David AU - Alahakoon, Damminda AU - Esplen, Jane Mary PY - 2021/1/7 TI - Natural Language Processing?Based Virtual Cofacilitator for Online Cancer Support Groups: Protocol for an Algorithm Development and Validation Study JO - JMIR Res Protoc SP - e21453 VL - 10 IS - 1 KW - artificial intelligence KW - cancer KW - online support groups KW - emotional distress KW - natural language processing KW - participant engagement N2 - Background: Cancer and its treatment can significantly impact the short- and long-term psychological well-being of patients and families. Emotional distress and depressive symptomatology are often associated with poor treatment adherence, reduced quality of life, and higher mortality. Cancer support groups, especially those led by health care professionals, provide a safe place for participants to discuss fear, normalize stress reactions, share solidarity, and learn about effective strategies to build resilience and enhance coping. However, in-person support groups may not always be accessible to individuals; geographic distance is one of the barriers for access, and compromised physical condition (eg, fatigue, pain) is another. Emerging evidence supports the effectiveness of online support groups in reducing access barriers. Text-based and professional-led online support groups have been offered by Cancer Chat Canada. Participants join the group discussion using text in real time. However, therapist leaders report some challenges leading text-based online support groups in the absence of visual cues, particularly in tracking participant distress. With multiple participants typing at the same time, the nuances of the text messages or red flags for distress can sometimes be missed. Recent advances in artificial intelligence such as deep learning?based natural language processing offer potential solutions. This technology can be used to analyze online support group text data to track participants? expressed emotional distress, including fear, sadness, and hopelessness. Artificial intelligence allows session activities to be monitored in real time and alerts the therapist to participant disengagement. Objective: We aim to develop and evaluate an artificial intelligence?based cofacilitator prototype to track and monitor online support group participants? distress through real-time analysis of text-based messages posted during synchronous sessions. Methods: An artificial intelligence?based cofacilitator will be developed to identify participants who are at-risk for increased emotional distress and track participant engagement and in-session group cohesion levels, providing real-time alerts for therapist to follow-up; generate postsession participant profiles that contain discussion content keywords and emotion profiles for each session; and automatically suggest tailored resources to participants according to their needs. The study is designed to be conducted in 4 phases consisting of (1) development based on a subset of data and an existing natural language processing framework, (2) performance evaluation using human scoring, (3) beta testing, and (4) user experience evaluation. Results: This study received ethics approval in August 2019. Phase 1, development of an artificial intelligence?based cofacilitator, was completed in January 2020. As of December 2020, phase 2 is underway. The study is expected to be completed by September 2021. Conclusions: An artificial intelligence?based cofacilitator offers a promising new mode of delivery of person-centered online support groups tailored to individual needs. International Registered Report Identifier (IRRID): DERR1-10.2196/21453 UR - https://www.researchprotocols.org/2021/1/e21453 UR - http://dx.doi.org/10.2196/21453 UR - http://www.ncbi.nlm.nih.gov/pubmed/33410754 ID - info:doi/10.2196/21453 ER - TY - JOUR AU - Andalibi, Nazanin AU - Flood, K. Madison PY - 2021/1/4 TI - Considerations in Designing Digital Peer Support for Mental Health: Interview Study Among Users of a Digital Support System (Buddy Project) JO - JMIR Ment Health SP - e21819 VL - 8 IS - 1 KW - mental health KW - peer support KW - technology KW - design KW - digital peer support KW - mHealth KW - digital health KW - internet N2 - Background: Peer support is an approach to cope with mental illness, and technology provides a way to facilitate peer support. However, there are barriers to seeking support in offline and technology-mediated contexts. Objective: This study aims to uncover potential ways to design digital mental health peer support systems and to outline a set of principles for future designers to consider as they embark on designing these systems. By learning how existing systems are used by people in daily life and by centering their experiences, we can better understand how to design mental health peer support technologies that foreground people?s needs. One existing digital peer support system is Buddy Project, the case study in this paper. Methods: This paper reports on an interview study with Buddy Project users (N=13). Data were analyzed using the constant comparative approach. Results: Individuals matched through Buddy Project developed supportive friendships with one another, leading them to become each other?s peer supporters in their respective journeys. It was not only the mental health peer support that was important to participants but also being able to connect over other parts of their lives and identities. The design of Buddy Project provided a sense of anonymity and separation from pre-existing ties, making it easier for participants to disclose struggles; moreover, the pairs appreciated being able to browse each other?s social media pages before connecting. Buddy Project has an explicit mission to prevent suicide and demonstrates this mission across its online platforms, which helps reduce the stigma around mental health within the peer support space. Pairs were matched based on shared interests and identities. This choice aided the pairs in developing meaningful, compatible, and supportive relationships with each other, where they felt seen and understood. However, the pairs were concerned that matching based on a shared mental health diagnosis may lead to sharing unhealthy coping mechanisms or comparing themselves and the severity of their experiences with their peers. Conclusions: The results of this study shed light on desirable features of a digital mental health peer support system: matching peers based on interests and identities that they self-identify with; having an explicit mental health?related mission coupled with social media and other web-based presences to signal that discussing mental health is safe within the peer support ecosystem; and not matching peers based on a broad mental health diagnosis. However, if the diagnosis is important, this matching should account for illness severity and educate peers on how to provide support while avoiding suggesting unhelpful coping mechanisms; allowing for some degree of anonymity and control over how peers present themselves to each other; and providing relevant information and tools to potential peers to help them decide if they would like to embark on a relationship with their matched peer before connecting with them. UR - https://mental.jmir.org/2021/1/e21819 UR - http://dx.doi.org/10.2196/21819 UR - http://www.ncbi.nlm.nih.gov/pubmed/33393909 ID - info:doi/10.2196/21819 ER - TY - JOUR AU - Pelletier, Jean-Francois AU - Houle, Janie AU - Goulet, Marie-Hélène AU - Juster, Robert-Paul AU - Giguère, Charles-Édouard AU - Bordet, Jonathan AU - Hénault, Isabelle AU - Lesage, Alain AU - De Benedictis, Luigi AU - Denis, Frédéric AU - Ng, Roger PY - 2020/12/18 TI - Online and Recovery-Oriented Support Groups Facilitated by Peer Support Workers in Times of COVID-19: Protocol for a Feasibility Pre-Post Study JO - JMIR Res Protoc SP - e22500 VL - 9 IS - 12 KW - peer support workers KW - internet-based peer support groups KW - personal-civic recovery KW - clinical recovery KW - COVID-19 Stress Scales KW - peer support KW - feasibility KW - mental health KW - COVID-19 KW - intervention KW - recovery N2 - Background: In times of pandemics, social distancing, isolation, and quarantine have precipitated depression, anxiety, and substance misuse. Scientific literature suggests that patients living with mental health problems or illnesses (MHPIs) who interact with peer support workers (PSWs) experience not only the empathy and connectedness that comes from similar life experiences but also feel hope in the possibility of recovery. So far, it is the effect of mental health teams or programs with PSWs that has been evaluated. Objective: This paper presents the protocol for a web-based intervention facilitated by PSWs. The five principal research questions are whether this intervention will have an impact in terms of (Q1) personal-civic recovery and (Q2) clinical recovery, (Q3) how these recovery potentials can be impacted by the COVID-19 pandemic, (Q4) how the lived experience of persons in recovery can be mobilized to cope with such a situation, and (Q5) how sex and gender considerations can be taken into account for the pairing of PSWs with service users beyond considerations based solely on psychiatric diagnoses or specific MHPIs. This will help us assess the impact of PSWs in this setting. Methods: PSWs will lead a typical informal peer support group within the larger context of online peer support groups, focusing on personal-civic recovery. They will be scripted with a fixed, predetermined duration (a series of 10 weekly 90-minute online workshops). There will be 2 experimental subgroups?patients diagnosed with (1) psychotic disorders (n=10) and (2) anxiety or mood disorders (n=10)?compared to a control group (n=10). Random assignment to the intervention and control arms will be conducted using a 2:1 ratio. Several instruments will be used to assess clinical recovery (eg, the Recovery Assessment Scale, the Citizenship Measure questionnaire). The COVID-19 Stress Scales will be used to assess effects in terms of clinical recovery and stress- or anxiety-related responses to COVID-19. Changes will be compared between groups from baseline to endpoint in the intervention and control groups using the Student paired sample t test. Results: This pilot study was funded in March 2020. The protocol was approved on June 16, 2020, by the Research Ethics Committees of the Montreal Mental Health University Institute. Recruitment took place during the months of July and August, and results are expected in December 2020. Conclusions: Study results will provide reliable evidence on the effectiveness of a web-based intervention provided by PSWs. The investigators, alongside key decision makers and patient partners, will ensure knowledge translation throughout, and our massive open online course (MOOC), The Fundamentals of Recovery, will be updated with the evidence and new knowledge generated by this feasibility study. Trial Registration: ClinicalTrials.gov NCT04445324; https://clinicaltrials.gov/ct2/show/NCT04445324 International Registered Report Identifier (IRRID): PRR1-10.2196/22500 UR - http://www.researchprotocols.org/2020/12/e22500/ UR - http://dx.doi.org/10.2196/22500 UR - http://www.ncbi.nlm.nih.gov/pubmed/33259326 ID - info:doi/10.2196/22500 ER - TY - JOUR AU - Laranjo, Liliana AU - Quiroz, C. Juan AU - Tong, Ly Huong AU - Arevalo Bazalar, Maria AU - Coiera, Enrico PY - 2020/12/8 TI - A Mobile Social Networking App for Weight Management and Physical Activity Promotion: Results From an Experimental Mixed Methods Study JO - J Med Internet Res SP - e19991 VL - 22 IS - 12 KW - mobile apps KW - fitness trackers KW - exercise KW - social networking KW - body weight maintenance KW - mobile phone N2 - Background: Smartphone apps, fitness trackers, and online social networks have shown promise in weight management and physical activity interventions. However, there are knowledge gaps in identifying the most effective and engaging interventions and intervention features preferred by their users. Objective: This 6-month pilot study on a social networking mobile app connected to wireless weight and activity tracking devices has 2 main aims: to evaluate changes in BMI, weight, and physical activity levels in users from different BMI categories and to assess user perspectives on the intervention, particularly on social comparison and automated self-monitoring and feedback features. Methods: This was a mixed methods study involving a one-arm, pre-post quasi-experimental pilot with postintervention interviews and focus groups. Healthy young adults used a social networking mobile app intervention integrated with wireless tracking devices (a weight scale and a physical activity tracker) for 6 months. Quantitative results were analyzed separately for 2 groups?underweight-normal and overweight-obese BMI?using t tests and Wilcoxon sum rank, Wilcoxon signed rank, and chi-square tests. Weekly BMI change in participants was explored using linear mixed effects analysis. Interviews and focus groups were analyzed inductively using thematic analysis. Results: In total, 55 participants were recruited (mean age of 23.6, SD 4.6 years; 28 women) and 45 returned for the final session (n=45, 82% retention rate). There were no differences in BMI from baseline to postintervention (6 months) and between the 2 BMI groups. However, at 4 weeks, participants? BMI decreased by 0.34 kg/m2 (P<.001), with a loss of 0.86 kg/m2 in the overweight-obese group (P=.01). Participants in the overweight-obese group used the app significantly less compared with individuals in the underweight-normal BMI group, as they mentioned negative feelings and demotivation from social comparison, particularly from upward comparison with fitter people. Participants in the underweight-normal BMI group were avid users of the app?s self-monitoring and feedback (P=.02) and social (P=.04) features compared with those in the overweight-obese group, and they significantly increased their daily step count over the 6-month study duration by an average of 2292 steps (95% CI 898-3370; P<.001). Most participants mentioned a desire for a more personalized intervention. Conclusions: This study shows the effects of different interventions on participants from higher and lower BMI groups and different perspectives regarding the intervention, particularly with respect to its social features. Participants in the overweight-obese group did not sustain a short-term decrease in their BMI and mentioned negative emotions from app use, while participants in the underweight-normal BMI group used the app more frequently and significantly increased their daily step count. These differences highlight the importance of intervention personalization. Future research should explore the role of personalized features to help overcome personal barriers and better match individual preferences and needs. UR - http://www.jmir.org/2020/12/e19991/ UR - http://dx.doi.org/10.2196/19991 UR - http://www.ncbi.nlm.nih.gov/pubmed/33289670 ID - info:doi/10.2196/19991 ER - TY - JOUR AU - Patel, T. Atul AU - Wein, Theodore AU - Bahroo, B. Laxman AU - Wilczynski, Ophélie AU - Rios, D. Carl AU - Murie-Fernández, Manuel PY - 2020/12/7 TI - Perspective of an International Online Patient and Caregiver Community on the Burden of Spasticity and Impact of Botulinum Neurotoxin Therapy: Survey Study JO - JMIR Public Health Surveill SP - e17928 VL - 6 IS - 4 KW - spasticity KW - activities of daily living KW - quality of life KW - survey methodology N2 - Background: Patient- and caregiver-reported data are lacking on the burden of spasticity, and the impact of botulinum neurotoxin type A (BoNT-A) treatment for this condition, on patients' daily lives. As recommended in recent guidance from the US Food and Drug Administration, online patient communities can represent a platform from which to gather specific information outside of a clinical trial setting on the burden of conditions experienced by patients and caregivers and their views on treatment options in order to inform evidence-based medicine and drug development. Objective: The objective of our study is to characterize spasticity symptoms and their associated burdens on Western European and US patients and caregivers in the realms of work, daily activities, quality of life (QoL), as well as the positive and negative impacts of treatment with BoNT-A (cost, time, QoL) using Carenity, an international online community for people with chronic health conditions. Methods: We performed a noninterventional, multinational survey. Eligible participants were 18 years old or older and had, or had cared for, someone with spasticity who had been treated with BoNT-A for at least 1 year. Patients and caregivers were asked to complete an internet-based survey via Carenity; caregivers reported their own answers and answered on behalf of their patients. Questions included the burden of spasticity on the ability to work, functioning, daily-living activities, and QoL, the impact of BoNT A therapy on patients' lives, and the potential benefits of fewer injections. Results: There were 615 respondents (427 patients and 188 caregivers). The mean age of patients and caregivers was 41.7 years and 38.6 years, respectively, and the most commonly reported cause of spasticity was multiple sclerosis. Caregivers were most often the parents (76/188, 40%) or another family member (51/188, 27%) of their patients. Spasticity had a clear impact on patients' and caregivers' lives, including the ability to work and injection costs. For patients, spasticity caused difficulties with activities of daily living and reduced QoL indices. The median number of BoNT-A injections was 4 times per year, and 92% (393/427) of patients reported that treatment improved their overall satisfaction with life. Regarding the BoNT-A injection burden, the greatest patient-reported challenges were the cost and availability of timely appointments. Overall, 86% (368/427) of patients believed that a reduced injection frequency would be beneficial. Caregivers answering for their patients gave largely similar responses to those reported by patients. Conclusions: Spasticity has a negative impact on both patients' and caregivers' lives. All respondents reported that BoNT A treatment improved their lives, despite the associated challenges. Patients believed that reducing the frequency of BoNT-A injections could alleviate practical issues associated with treatment, implying that a longer-acting BoNT-A injection would be well received. UR - http://publichealth.jmir.org/2020/4/e17928/ UR - http://dx.doi.org/10.2196/17928 UR - http://www.ncbi.nlm.nih.gov/pubmed/33284124 ID - info:doi/10.2196/17928 ER - TY - JOUR AU - Garg, Ria AU - Rebi?, Nevena AU - De Vera, A. Mary PY - 2020/12/2 TI - Information Needs About Cancer Treatment, Fertility, and Pregnancy: Qualitative Descriptive Study of Reddit Threads JO - JMIR Cancer SP - e17771 VL - 6 IS - 2 KW - cancer treatment KW - health information KW - oncofertility KW - fertility KW - pregnancy KW - reproduction KW - social support N2 - Background: A reproductive health implication of the increasing incidence of cancer among women is the impact of cancer treatment on fertility. Objective: As patients are increasingly using the internet, particularly online forums, to seek and share experiences, our objective was to understand information needs about cancer treatment, fertility, and pregnancy of women with cancer as well as their caregivers. Methods: We searched threads (original posts and responses) on four subreddit sites of Reddit (?r/Cancer,? ?r/TryingForABaby,? ?r/BabyBumps,? and ?r/Infertility?) over a 5?year period between February 4th, 2014 and February 4th, 2019. Threads with original posts involving a lived experience or question regarding cancer treatment and female fertility and/or pregnancy or parenting/having children from the perspective of either patient or caregiver were included in our analysis. We analyzed threads using thematic analysis. Results: From 963 Reddit threads identified, 69 were analyzed, including 56 with original posts by women with cancer and 13 with original posts by caregivers. From threads made by patients, we identified themes on becoming a part of an online community, impacts of cancer treatment and fertility concerns on self and social relationships, making family planning decisions, and experiences with medical team. We also identified a theme on the impact of cancer treatment and fertility concerns on caregivers. Conclusions: Reddit provided a rich pool of data for analyzing the information needs of women facing cancer. Our findings demonstrate the far-reaching impacts of cancer treatment and fertility on physical, mental, and psychosocial health for both patients and their caregivers. UR - http://cancer.jmir.org/2020/2/e17771/ UR - http://dx.doi.org/10.2196/17771 UR - http://www.ncbi.nlm.nih.gov/pubmed/33263547 ID - info:doi/10.2196/17771 ER - TY - JOUR AU - Willard, Sarah AU - van Rossum, Erik AU - Spreeuwenberg, Marieke AU - de Witte, Luc PY - 2020/12/1 TI - Perceived Impact of an Online Community Care Platform for Dutch Older Adults on Local Participation, Informal Caregiving, and Feelings of Connectedness: Pretest-Posttest Observational Study JO - J Med Internet Res SP - e20304 VL - 22 IS - 12 KW - older adults KW - online community KW - online platform KW - social network KW - local participation KW - informal caregiving N2 - Background: In a changing ageing society wherein older adults are increasingly expected to take care of themselves instead of relying on health care services, online community care platforms can help older adults to meet these expectations. A considerable number of these online community care platforms have been introduced in several European countries based on their potential. However, their actual impact is unclear. Objective: The aim of this study was to investigate the self-reported use, expectations, and perceived impact of a Dutch online community care platform called Grubbenvorst-Online among Dutch older adults. The following 2 questions were studied: (1) What is the self-reported use of Grubbenvorst-Online among older adults? (2) What are their expectations and perceived impact of Grubbenvorst-Online regarding local participation, their social network, mutual informal caregiving, and feelings of connectedness? Methods: An observational pretest-posttest study was conducted. Participants were recruited via a web-based message on the Grubbenvorst-Online platform and data were collected via postal questionnaires among older users at the start of the study and 4 months later. Data regarding the expectations and the perceived impact of Grubbenvorst-Online were compared and tested. Results: Forty-seven Grubbenvorst-Online users with an average age of 74 years participated in this study. They were healthy, predominantly ?internet-skilled,? and they found the internet important for maintaining social contacts. In general, the use of the online community care platform decreased during the 4-month follow-up period. The perceived impact of Grubbenvorst-Online was significantly lower than that expected regarding information provision (P=.003), seeking help from fellow villagers (P<.001), giving help to fellow villagers (P<.001), and consulting care or welfare services (P<.001). Conclusions: The findings of this study indicate that online community care platforms perhaps do not provide enough ?added value? in their current form. We suggest a new direction in which online community care platforms primarily support existing offline initiatives aimed at stimulating local participation, informal caregiving, and feelings of connectedness. UR - https://www.jmir.org/2020/12/e20304 UR - http://dx.doi.org/10.2196/20304 UR - http://www.ncbi.nlm.nih.gov/pubmed/33258779 ID - info:doi/10.2196/20304 ER - TY - JOUR AU - Almeida, Margaret AU - Day, Annie AU - Smith, Bret AU - Bianco, Cynthia AU - Fortuna, Karen PY - 2020/11/26 TI - Actionable Items to Address Challenges Incorporating Peer Support Specialists Within an Integrated Mental Health and Substance Use Disorder System: Co-Designed Qualitative Study JO - J Participat Med SP - e17053 VL - 12 IS - 4 KW - experience-based co-design KW - mental health recovery KW - substance-related disorders KW - peer support KW - peer support specialist KW - health workforce KW - patient experience KW - patient satisfaction KW - coproduction N2 - Background: Peer support specialists offering mental health and substance use support services have been shown to reduce stigma, hospitalizations, and health care costs. However, as peer support specialists are part of a fast-growing mental health and substance use workforce in innovative integrated care settings, they encounter various challenges in their new roles and tasks. Objective: The purpose of this study was to explore peer support specialists? experiences regarding employment challenges in integrated mental health and substance use workplace settings in New Hampshire, USA. Methods: Using experience-based co-design, nonpeer academic researchers co-designed this study with peer support specialists. We conducted a series of focus groups with peer support specialists (N=15) from 3 different integrated mental health and substance use agencies. Audio recordings were transcribed. Data analysis included content analysis and thematic analysis. Results: We identified 90 final codes relating to 6 themes: (1) work role and boundaries, (2) hiring, (3) work-life balance, (4) work support, (5) challenges, and (6) identified training needs. Conclusions: The shared values of experience-based co-design and peer support specialists eased facilitation between peer support specialists and nonpeer academic researchers, and indicated that this methodology is feasible for nonpeer academic researchers and peer support specialists alike. Participants expressed challenges with agency restrictions, achieving work-life balance, stigma, and low compensation. We present actionable items to address these challenges in integrated mental health and substance use systems to potentially offset workforce dissatisfaction and high turnover rates. UR - https://jopm.jmir.org/2020/4/e17053 UR - http://dx.doi.org/10.2196/17053 UR - http://www.ncbi.nlm.nih.gov/pubmed/33242015 ID - info:doi/10.2196/17053 ER - TY - JOUR AU - Martin, Philippe AU - Alberti, Corinne AU - Gottot, Serge AU - Bourmaud, Aurelie AU - de La Rochebrochard, Elise PY - 2020/11/24 TI - Expert Opinions on Web-Based Peer Education Interventions for Youth Sexual Health Promotion: Qualitative Study JO - J Med Internet Res SP - e18650 VL - 22 IS - 11 KW - youth KW - health promotion KW - internet KW - sexual health KW - peer education N2 - Background: Participatory education, in the form of peer education, may be an effective way to promote youth sexual health. With the advent of the internet, web-based interventions have potential as an attractive new tool for sexual health promotion by peers. Objective: The aim of this study was to evaluate professional experts? opinions on the perspectives for web-based participatory interventions to promote sexual health by peers and among young people. Methods: Semistructured interviews were carried out with 20 experts (stakeholders in direct contact with young people, researchers, and institutional actors) specializing in sexual health, health promotion, peer education, youth, internet, and social media. After coding with N?Vivo, data were subjected to qualitative thematic analysis. Results: The majority of experts (18/20, 90%) found this kind of intervention to be attractive, but highlighted the necessary conditions, risks, and limitations attached to developing an acceptable peer intervention on the internet for sexual health promotion among young people. Five main themes were identified: (1) an internet intervention; (2) sexual health; (3) internet skills, and uses and the need for moderation; (4) multifaceted peers; and (5) minority peers. In the absence of youth interest for institutional messages, the experts highlighted the attractive participatory features of web-based interventions and the need for geolocalized resources. However, they also warned of the limitations associated with the possibility of integrating peers into education: peers should not be mere messengers, and should remain peers so as not to be outsiders to the target group. Experts highlighted concrete proposals to design an online participatory peer intervention, including the process of peer implication, online features in the intervention, and key points for conception and evaluation. Conclusions: The experts agreed that web-based participatory interventions for youth sexual health promotion must be tailored to needs, uses, and preferences. This type of action requires youth involvement framed in an inclusive and holistic sexual health approach. Peer education can be implemented via the internet, but the design of the intervention also requires not being overly institutional in nature. Involving young people in their own education in an interactive, safe online space has the potential to develop their empowerment and to foster long-term positive behaviors, especially in the area of sexual health. UR - http://www.jmir.org/2020/11/e18650/ UR - http://dx.doi.org/10.2196/18650 UR - http://www.ncbi.nlm.nih.gov/pubmed/33231552 ID - info:doi/10.2196/18650 ER - TY - JOUR AU - Tong, Ka Anson Hei AU - See, Christopher PY - 2020/11/23 TI - Informal and Formal Peer Teaching in the Medical School Ecosystem: Perspectives From a Student-Teacher Team JO - JMIR Med Educ SP - e21869 VL - 6 IS - 2 KW - Peer learning KW - medical education KW - peer teaching KW - peer-led learning KW - peer KW - education UR - http://mededu.jmir.org/2020/2/e21869/ UR - http://dx.doi.org/10.2196/21869 UR - http://www.ncbi.nlm.nih.gov/pubmed/33226345 ID - info:doi/10.2196/21869 ER - TY - JOUR AU - Titgemeyer, Catrin Sarah AU - Schaaf, Patrick Christian PY - 2020/11/19 TI - Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis JO - JMIR Pediatr Parent SP - e21694 VL - 3 IS - 2 KW - pediatric rare diseases KW - rare diseases KW - support group KW - online support KW - Facebook support group KW - social media KW - parent support KW - support group privacy KW - counseling N2 - Background: Loneliness, social isolation, and feeling disconnected from society are commonly experienced by parents of children with rare diseases and are, among others, important reasons for special supportive care needs. Social networking platforms are increasingly used for health communication, information exchange, and support. In the field of rare pediatric diseases, qualitative studies have shown that Facebook online support groups are utilized by and beneficial for persons affected by rare pediatric diseases. Nonetheless, the extent of this usage has not been investigated. Objective: This study aims to provide a comprehensive quantitative analysis of the extent of Facebook usage as a tool for rare pediatric disease support groups and to explore factors that influence a disease?s representation on Facebook. These results potentially offer important insights for future public health initiatives and give direction to further research that can give much needed support to parents of children with rare diseases. Methods: We determined rare pediatric diseases using the inventory of the online portal Orphanet. Facebook support groups were identified by searching 5 synonymous disease descriptions using the group category search bar. Disease- and group-describing parameters were statistically analyzed using standard descriptive statistical methods. Results: 6398 Facebook support groups, representing 826 diseases (19.5% of all searched diseases), were found. 69% are private groups. Group type, size, activity (sum of posts, comments, and reactions calculated by Facebook), new memberships, and language varied largely between groups (member count: minimum 1, maximum 23,414; activity last 30 days: minimum 0, maximum 3606). The highest percentage of awareness and information groups was found for teratogenic diseases (18/68, 26%). The odds of finding a Facebook group increased according to the level of information available about the disease: known prevalence (odds ratio [OR] 3.98, 95% CI 3.39-4.66, P<.001), known disease type (OR 3.15, 95% CI 2.70-3.68, P<.001), and known inheritance mode (OR 2.06, 95% CI 1.68-2.52, P<.001) were all associated with higher odds of finding a Facebook group, as was dominant compared to nondominant inheritance (OR 2.05, 95% CI 1.74-3.42, P<.001). The number of groups per disease increased with higher prevalence. Conclusions: Facebook is widely used as a tool for support groups for rare pediatric diseases and continues to be relevant. Two-thirds of the groups are private groups, indicating group participants? need for privacy, which should be further explored. The advantages and limitations of Facebook as a tool for support groups in the field of rare diseases should be further investigated as it will allow health professionals to use Facebook more meaningfully in their counseling and guidance of affected individuals and their family members. UR - http://pediatrics.jmir.org/2020/2/e21694/ UR - http://dx.doi.org/10.2196/21694 UR - http://www.ncbi.nlm.nih.gov/pubmed/33211019 ID - info:doi/10.2196/21694 ER - TY - JOUR AU - Perkins, Victoria AU - Coulson, S. Neil AU - Davies, Bethan E. PY - 2020/11/3 TI - Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users? Experiences JO - J Med Internet Res SP - e18099 VL - 22 IS - 11 KW - social network KW - social support KW - qualitative research KW - online community KW - online support group KW - Tourette syndrome KW - tic disorders N2 - Background: People living with a tic disorder (TD)?such as Tourette syndrome (TS)?experience many negative psychological and social challenges arising from chronic tics, such as stigmatization from peers and poorer quality of life, and these can impact upon their families too. It can be difficult for this population to access face-to-face support for tics, and so online support communities offer one avenue for support from peers facing similar experiences. However, little is known about how online support communities may be used by people with TS and other TDs, and by others (eg, parents, caregivers) supporting a person with TS/TD. Objective: This study aimed to explore users? experiences of participation in online support communities for TS and TDs. Methods: In total, 90 respondents (aged 13-62 years; 62% [56/90] female) from 13 countries completed an online survey exploring their experiences of using online support communities for TS and TDs. Respondents were people living with TS/TD themselves (n=68) or supportive others of someone with TS/TD (eg, parent, sibling, spouse; n=14), or both (n=8). The online survey contained open-ended questions eliciting their self-reported motivations for using online communities, their benefits and drawbacks of participation, and whether online support communities affected offline management of tics. Responses were analyzed using thematic analysis. Results: Seven overarching themes captured experiences of using online support communities for TS/TDs. The overwhelming reason for their use was to find accessible support due to a lack of offline face-to-face support. Online support communities were valued sources of informational and emotional support, and also had a positive impact upon helping users? psychological well-being. Online communities helped provide a space where people with TS/TDs could feel accepted and reduce the social isolation they felt offline. The suggestible nature of tics and being reminded of the challenging nature of TDs were main disadvantages arising from using online support communities, alongside conflict arising within online communities. Conclusions: The findings suggest that online support communities appear to offer valuable informational and emotional support to those living with TS/TD and their families too, especially given the lack of locally available support. This facilitates a sense of community online, which can help users in overcoming long-standing social isolation and aid self-reported improvements in psychosocial well-being. Users reported some drawbacks in engaging with online support communities, such as conflict between different types of users and triggering content, which negatively affected experiences of community participation. UR - http://www.jmir.org/2020/11/e18099/ UR - http://dx.doi.org/10.2196/18099 UR - http://www.ncbi.nlm.nih.gov/pubmed/33141089 ID - info:doi/10.2196/18099 ER - TY - JOUR AU - Schäfer, Florent AU - Faviez, Carole AU - Voillot, Paméla AU - Foulquié, Pierre AU - Najm, Matthieu AU - Jeanne, Jean-François AU - Fagherazzi, Guy AU - Schück, Stéphane AU - Le Nevé, Boris PY - 2020/11/3 TI - Mapping and Modeling of Discussions Related to Gastrointestinal Discomfort in French-Speaking Online Forums: Results of a 15-Year Retrospective Infodemiology Study JO - J Med Internet Res SP - e17247 VL - 22 IS - 11 KW - gastrointestinal discomfort KW - disorders of gut-brain interactions KW - social media KW - infodemiology KW - topic modeling N2 - Background: Gastrointestinal (GI) discomfort is prevalent and known to be associated with impaired quality of life. Real-world information on factors of GI discomfort and solutions used by people is, however, limited. Social media, including online forums, have been considered a new source of information to examine the health of populations in real-life settings. Objective: The aims of this retrospective infodemiology study are to identify discussion topics, characterize users, and identify perceived determinants of GI discomfort in web-based messages posted by users of French social media. Methods: Messages related to GI discomfort posted between January 2003 and August 2018 were extracted from 14 French-speaking general and specialized publicly available online forums. Extracted messages were cleaned and deidentified. Relevant medical concepts were determined on the basis of the Medical Dictionary for Regulatory Activities and vernacular terms. The identification of discussion topics was carried out by using a correlated topic model on the basis of the latent Dirichlet allocation. A nonsupervised clustering algorithm was applied to cluster forum users according to the reported symptoms of GI discomfort, discussion topics, and activity on online forums. Users? age and gender were determined by linear regression and application of a support vector machine, respectively, to characterize the identified clusters according to demographic parameters. Perceived factors of GI discomfort were classified by a combined method on the basis of syntactic analysis to identify messages with causality terms and a second topic modeling in a relevant segment of phrases. Results: A total of 198,866 messages associated with GI discomfort were included in the analysis corpus after extraction and cleaning. These messages were posted by 36,989 separate web users, most of them being women younger than 40 years. Everyday life, diet, digestion, abdominal pain, impact on the quality of life, and tips to manage stress were among the most discussed topics. Segmentation of users identified 5 clusters corresponding to chronic and acute GI concerns. Diet topic was associated with each cluster, and stress was strongly associated with abdominal pain. Psychological factors, food, and allergens were perceived as the main causes of GI discomfort by web users. Conclusions: GI discomfort is actively discussed by web users. This study reveals a complex relationship between food, stress, and GI discomfort. Our approach has shown that identifying web-based discussion topics associated with GI discomfort and its perceived factors is feasible and can serve as a complementary source of real-world evidence for caregivers. UR - https://www.jmir.org/2020/11/e17247 UR - http://dx.doi.org/10.2196/17247 UR - http://www.ncbi.nlm.nih.gov/pubmed/33141087 ID - info:doi/10.2196/17247 ER - TY - JOUR AU - Teo, R. Alan AU - Strange, Wynn AU - Bui, Ricky AU - Dobscha, K. Steven AU - Ono, S. Sarah PY - 2020/10/30 TI - Responses to Concerning Posts on Social Media and Their Implications for Suicide Prevention Training for Military Veterans: Qualitative Study JO - J Med Internet Res SP - e22076 VL - 22 IS - 10 KW - concerning post KW - social media KW - suicide prevention KW - gatekeeper training KW - military veterans N2 - Background: A ?concerning post? is a display of a user?s emotional crisis on a social media platform. A better understanding of concerning posts is relevant to suicide prevention, but little is known about social media users? attitudes and responses to concerning posts. Military veterans in the United States are disproportionately affected by suicide, often use social media, and may have exposure to individuals with elevated suicide risk via concerning posts. Objective: The objective of the study was (1) to obtain insight into whether and how US military veterans respond to members of their social network on social media (ie, ?friends?) who are experiencing substantial emotional distress, and (2) to identify potential interventions that could assist in users? response to concerning posts. Methods: We recruited veterans through Facebook and conducted semistructured interviews with 30 participants between June and December 2017. We used a summary template for rapid analysis of each interview, followed by double-coding using a codebook based on topic domains from the interview guide. Members of the research team met regularly to discuss emerging patterns in the data, generate themes, and select representative quotes for inclusion in the manuscript. Results: Veterans were reluctant to disclose emotional and health issues on Facebook, but they were open to reaching out to others? concerning posts. There was a complex calculus underlying whether and how veterans responded to a concerning post, which involved considering (1) physical proximity to the person posting, (2) relationship closeness, (3) existing responses to the post, and (4) ability to maintain contact with the person. Veterans desired additional training, backed by community-based veteran organizations, in how to respond to concerning posts from peers. Conclusions: There is a need to incorporate features that will help veterans effectively respond to concerning posts from peers into suicide prevention training and to expand access for veterans to such training. UR - https://www.jmir.org/2020/10/e22076 UR - http://dx.doi.org/10.2196/22076 UR - http://www.ncbi.nlm.nih.gov/pubmed/33124990 ID - info:doi/10.2196/22076 ER - TY - JOUR AU - Sanders, Remco AU - Araujo, B. Theo AU - Vliegenthart, Rens AU - van Eenbergen, C. Mies AU - van Weert, M. Julia C. AU - Linn, J. Annemiek PY - 2020/10/19 TI - Patients? Convergence of Mass and Interpersonal Communication on an Online Forum: Hybrid Methods Analysis JO - J Med Internet Res SP - e18303 VL - 22 IS - 10 KW - convergence KW - online health seeking KW - supervised machine learning KW - patient needs KW - machine learning KW - online forums KW - patients KW - media N2 - Background: Patients are increasingly taking an active role in their health. In doing so, they combine both mass and interpersonal media to gratify their cognitive and affective needs (ie, convergence). Owing to methodological challenges when studying convergence, a detailed view of how patients are using different types of media for needs fulfillment is lacking. Objective: The aim of this study was to obtain insight into the frequency of reported convergence, how convergence affects what posters write online, motives for posting, and the needs posters are trying to fulfill. Methods: Using a hybrid method of content analysis and supervised machine learning, this study used naturally available data to fill this research gap. We analyzed opening posts (N=1708) of an online forum targeting cancer patients and their relatives (Kanker.nl). Results: Nearly one-third of the forum opening posts contained signs of convergence in mass or interpersonal media. Posts containing mass media references disclosed less personal information and were more geared toward community enhancement and sharing experiences compared to posts without convergence. Furthermore, compared to posts without signs of convergence, posts that included interpersonal media references disclosed more personal information, and posters were more likely to ask for the experiences of fellow users to fulfill their needs. Within posts containing signs of convergence, posts including interpersonal media references reported fewer shortages of information, disclosed more information about the disease, and were more active in seeking other posters? experiences compared to posts containing mass media references. Conclusions: The current study highlights the intertwining of media platforms for patients. The insights of this study can be used to adapt the health care system toward a new type of health information?seeking behavior in which one medium is not trusted to fulfill all needs. Instead, providers should incorporate the intertwinement of sources by providing patients with reliable websites and forums through which they can fulfill their needs. UR - https://www.jmir.org/2020/10/e18303 UR - http://dx.doi.org/10.2196/18303 UR - http://www.ncbi.nlm.nih.gov/pubmed/33074160 ID - info:doi/10.2196/18303 ER - TY - JOUR AU - Low, M. Daniel AU - Rumker, Laurie AU - Talkar, Tanya AU - Torous, John AU - Cecchi, Guillermo AU - Ghosh, S. Satrajit PY - 2020/10/12 TI - Natural Language Processing Reveals Vulnerable Mental Health Support Groups and Heightened Health Anxiety on Reddit During COVID-19: Observational Study JO - J Med Internet Res SP - e22635 VL - 22 IS - 10 KW - COVID-19 KW - mental health KW - psychiatry KW - infodemiology KW - infoveillance KW - infodemic KW - social media KW - Reddit KW - natural language processing KW - ADHD KW - eating disorders KW - anxiety KW - suicidality N2 - Background: The COVID-19 pandemic is impacting mental health, but it is not clear how people with different types of mental health problems were differentially impacted as the initial wave of cases hit. Objective: The aim of this study is to leverage natural language processing (NLP) with the goal of characterizing changes in 15 of the world?s largest mental health support groups (eg, r/schizophrenia, r/SuicideWatch, r/Depression) found on the website Reddit, along with 11 non?mental health groups (eg, r/PersonalFinance, r/conspiracy) during the initial stage of the pandemic. Methods: We created and released the Reddit Mental Health Dataset including posts from 826,961 unique users from 2018 to 2020. Using regression, we analyzed trends from 90 text-derived features such as sentiment analysis, personal pronouns, and semantic categories. Using supervised machine learning, we classified posts into their respective support groups and interpreted important features to understand how different problems manifest in language. We applied unsupervised methods such as topic modeling and unsupervised clustering to uncover concerns throughout Reddit before and during the pandemic. Results: We found that the r/HealthAnxiety forum showed spikes in posts about COVID-19 early on in January, approximately 2 months before other support groups started posting about the pandemic. There were many features that significantly increased during COVID-19 for specific groups including the categories ?economic stress,? ?isolation,? and ?home,? while others such as ?motion? significantly decreased. We found that support groups related to attention-deficit/hyperactivity disorder, eating disorders, and anxiety showed the most negative semantic change during the pandemic out of all mental health groups. Health anxiety emerged as a general theme across Reddit through independent supervised and unsupervised machine learning analyses. For instance, we provide evidence that the concerns of a diverse set of individuals are converging in this unique moment of history; we discovered that the more users posted about COVID-19, the more linguistically similar (less distant) the mental health support groups became to r/HealthAnxiety (?=?0.96, P<.001). Using unsupervised clustering, we found the suicidality and loneliness clusters more than doubled in the number of posts during the pandemic. Specifically, the support groups for borderline personality disorder and posttraumatic stress disorder became significantly associated with the suicidality cluster. Furthermore, clusters surrounding self-harm and entertainment emerged. Conclusions: By using a broad set of NLP techniques and analyzing a baseline of prepandemic posts, we uncovered patterns of how specific mental health problems manifest in language, identified at-risk users, and revealed the distribution of concerns across Reddit, which could help provide better resources to its millions of users. We then demonstrated that textual analysis is sensitive to uncover mental health complaints as they appear in real time, identifying vulnerable groups and alarming themes during COVID-19, and thus may have utility during the ongoing pandemic and other world-changing events such as elections and protests. UR - http://www.jmir.org/2020/10/e22635/ UR - http://dx.doi.org/10.2196/22635 UR - http://www.ncbi.nlm.nih.gov/pubmed/32936777 ID - info:doi/10.2196/22635 ER - TY - JOUR AU - Feliciano, T. Josemari AU - Salmi, Liz AU - Blotner, Charlie AU - Hayden, Adam AU - Nduom, K. Edjah AU - Kwan, M. Bethany AU - Katz, S. Matthew AU - Claus, B. Elizabeth PY - 2020/10/8 TI - Brain Tumor Discussions on Twitter (#BTSM): Social Network Analysis JO - J Med Internet Res SP - e22005 VL - 22 IS - 10 KW - brain tumors KW - social media KW - health care KW - patient support KW - network analysis N2 - Background: The Brain Tumor Social Media (#BTSM) Twitter hashtag was founded in February 2012 as a disease-specific hashtag for patients with brain tumor. Objective: To understand #BTSM?s role as a patient support system, we describe user descriptors, growth, interaction, and content sharing. Methods: We analyzed all tweets containing #BTSM from 2012 to 2018 using the Symplur Signals platform to obtain data and to describe Symplur-defined user categories, tweet content, and trends in use over time. We created a network plot with all publicly available retweets involving #BTSM in 2018 to visualize key stakeholders and their connections to other users. Results: From 2012 to 2018, 59,764 unique users participated in #BTSM, amassing 298,904 tweets. The yearly volume of #BTSM tweets increased by 264.57% from 16,394 in 2012 to 43,373 in 2018 with #BTSM constantly trending in the top 15 list of disease hashtags, as well the top 15 list of tweet chats. Patient advocates generated the most #BTSM tweets (33.13%), while advocacy groups, caregivers, doctors, and researchers generated 7.01%, 4.63%, 3.86%, and 3.37%, respectively. Physician use, although still low, has increased over time. The 2018 network plot of retweets including #BTSM identifies a number of key stakeholders from the patient advocate, patient organization, and medical researcher domains and reveals the extent of their reach to other users. Conclusions: From its start in 2012, #BTSM has grown exponentially over time. We believe its growth suggests its potential as a global source of brain tumor information on Twitter for patients, advocates, patient organizations as well as health care professionals and researchers. UR - http://www.jmir.org/2020/10/e22005/ UR - http://dx.doi.org/10.2196/22005 UR - http://www.ncbi.nlm.nih.gov/pubmed/33030435 ID - info:doi/10.2196/22005 ER - TY - JOUR AU - Kühnle, Lara AU - Mücke, Urs AU - Lechner, M. Werner AU - Klawonn, Frank AU - Grigull, Lorenz PY - 2020/9/29 TI - Development of a Social Network for People Without a Diagnosis (RarePairs): Evaluation Study JO - J Med Internet Res SP - e21849 VL - 22 IS - 9 KW - rare disease KW - diagnostic support tool KW - prototype KW - social network KW - machine learning KW - artificial intelligence N2 - Background: Diagnostic delay in rare disease (RD) is common, occasionally lasting up to more than 20 years. In attempting to reduce it, diagnostic support tools have been studied extensively. However, social platforms have not yet been used for systematic diagnostic support. This paper illustrates the development and prototypic application of a social network using scientifically developed questions to match individuals without a diagnosis. Objective: The study aimed to outline, create, and evaluate a prototype tool (a social network platform named RarePairs), helping patients with undiagnosed RDs to find individuals with similar symptoms. The prototype includes a matching algorithm, bringing together individuals with similar disease burden in the lead-up to diagnosis. Methods: We divided our project into 4 phases. In phase 1, we used known data and findings in the literature to understand and specify the context of use. In phase 2, we specified the user requirements. In phase 3, we designed a prototype based on the results of phases 1 and 2, as well as incorporating a state-of-the-art questionnaire with 53 items for recognizing an RD. Lastly, we evaluated this prototype with a data set of 973 questionnaires from individuals suffering from different RDs using 24 distance calculating methods. Results: Based on a step-by-step construction process, the digital patient platform prototype, RarePairs, was developed. In order to match individuals with similar experiences, it uses answer patterns generated by a specifically designed questionnaire (Q53). A total of 973 questionnaires answered by patients with RDs were used to construct and test an artificial intelligence (AI) algorithm like the k-nearest neighbor search. With this, we found matches for every single one of the 973 records. The cross-validation of those matches showed that the algorithm outperforms random matching significantly. Statistically, for every data set the algorithm found at least one other record (match) with the same diagnosis. Conclusions: Diagnostic delay is torturous for patients without a diagnosis. Shortening the delay is important for both doctors and patients. Diagnostic support using AI can be promoted differently. The prototype of the social media platform RarePairs might be a low-threshold patient platform, and proved suitable to match and connect different individuals with comparable symptoms. This exchange promoted through RarePairs might be used to speed up the diagnostic process. Further studies include its evaluation in a prospective setting and implementation of RarePairs as a mobile phone app. UR - http://www.jmir.org/2020/9/e21849/ UR - http://dx.doi.org/10.2196/21849 UR - http://www.ncbi.nlm.nih.gov/pubmed/32990634 ID - info:doi/10.2196/21849 ER - TY - JOUR AU - Ju, Chunhua AU - Zhang, Shuangzhu PY - 2020/9/28 TI - Influencing Factors of Continuous Use of Web-Based Diagnosis and Treatment by Patients With Diabetes: Model Development and Data Analysis JO - J Med Internet Res SP - e18737 VL - 22 IS - 9 KW - online health communities KW - patient-doctor trust KW - ELM KW - trust theory KW - structural equation modeling KW - online continuous diagnosis and treatment N2 - Background: The internet has become a major source of health care information for patients and has enabled them to obtain continuous diagnosis and treatment services. However, the quality of web-based health care information is mixed, which raises concerns about the credibility of physician advice obtained on the internet and markedly affects patients? choices and decision-making behavior with regard to web-based diagnosis and treatment. Therefore, it is important to identify the influencing factors of continuous use of web-based diagnosis and treatment from the perspective of trust. Objective: The objective of our study was to investigate the influencing factors of patients? continuous use of web-based diagnosis and treatment based on the elaboration likelihood model and on trust theory in the face of a decline in physiological conditions and the lack of convenient long-term professional guidance. Methods: Data on patients with diabetes in China who used an online health community twice or more from January 2018 to June 2019 were collected by developing a web crawler. A total of 2437 valid data records were obtained and then analyzed using correlation factor analysis and regression analysis to validate our research model and hypotheses. Results: The timely response rate (under the central route), the reference group (under the peripheral route), and the number of thank-you letters and patients? ratings that measure physicians? electronic word of mouth are all positively related with the continuous use of web-based diagnosis and treatment by patients with diabetes. Moreover, the physician?s professional title and hospital?s ranking level had weak effects on the continuous use of web-based diagnosis and treatment by patients with diabetes, and the effect size of the physician?s professional title was greater than that of the hospital?s ranking level. Conclusions: From the patient's perspective, among all indicators that measure physicians? service quality, the effect size of a timely response rate is much greater than those of effect satisfaction and attitude satisfaction; thus, the former plays an essential role in influencing the patients? behavior of continuous use of web-based diagnosis and treatment services. In addition, the effect size of electronic word of mouth was greater than that of the physician?s offline reputation. Physicians who provide web-based services should seek clues to patients? needs and preferences for receiving health information during web-based physician-patient interactions and make full use of their professionalism and service reliability to communicate effectively with patients. Furthermore, the platform should improve its electronic word of mouth mechanism to realize its full potential in trust transmission and motivation, ultimately promoting the patient?s information-sharing behavior and continuous use of web-based diagnosis and treatment. UR - http://www.jmir.org/2020/9/e18737/ UR - http://dx.doi.org/10.2196/18737 UR - http://www.ncbi.nlm.nih.gov/pubmed/32771982 ID - info:doi/10.2196/18737 ER - TY - JOUR AU - Bernecker, L. Samantha AU - Williams, Jay Joseph AU - Caporale-Berkowitz, A. Norian AU - Wasil, R. Akash AU - Constantino, J. Michael PY - 2020/9/21 TI - Nonprofessional Peer Support to Improve Mental Health: Randomized Trial of a Scalable Web-Based Peer Counseling Course JO - J Med Internet Res SP - e17164 VL - 22 IS - 9 KW - online learning KW - nonprofessional education KW - educational technology KW - computer-assisted instruction KW - social support KW - mental health KW - psychological stress KW - eHealth KW - internet N2 - Background: Millions of people worldwide are underserved by the mental health care system. Indeed, most mental health problems go untreated, often because of resource constraints (eg, limited provider availability and cost) or lack of interest or faith in professional help. Furthermore, subclinical symptoms and chronic stress in the absence of a mental illness diagnosis often go unaddressed, despite their substantial health impact. Innovative and scalable treatment delivery methods are needed to supplement traditional therapies to fill these gaps in the mental health care system. Objective: This study aims to investigate whether a self-guided web-based course can teach pairs of nonprofessional peers to deliver psychological support to each other. Methods: In this experimental study, a community sample of 30 dyads (60 participants, mostly friends), many of whom presented with mild to moderate psychological distress, were recruited to complete a web-based counseling skills course. Dyads were randomized to either immediate or delayed access to training. Before and after training, dyads were recorded taking turns discussing stressors. Participants? skills in the helper role were assessed before and after taking the course: the first author and a team of trained research assistants coded recordings for the presence of specific counseling behaviors. When in the client role, participants rated the session on helpfulness in resolving their stressors and supportiveness of their peers. We hypothesized that participants would increase the use of skills taught by the course and decrease the use of skills discouraged by the course, would increase their overall adherence to the guidelines taught in the course, and would perceive posttraining counseling sessions as more helpful and their peers as more supportive. Results: The course had large effects on most helper-role speech behaviors: helpers decreased total speaking time, used more restatements, made fewer efforts to influence the speaker, and decreased self-focused and off-topic utterances (ds=0.8-1.6). When rating the portion of the session in which they served as clients, participants indicated that they made more progress in addressing their stressors during posttraining counseling sessions compared with pretraining sessions (d=1.1), but they did not report substantive changes in feelings of closeness and supportiveness of their peers (d=0.3). Conclusions: The results provide proof of concept that nonprofessionals can learn basic counseling skills from a scalable web-based course. The course serves as a promising model for the development of web-based counseling skills training, which could provide accessible mental health support to some of those underserved by traditional psychotherapy. UR - http://www.jmir.org/2020/9/e17164/ UR - http://dx.doi.org/10.2196/17164 UR - http://www.ncbi.nlm.nih.gov/pubmed/32955451 ID - info:doi/10.2196/17164 ER - TY - JOUR AU - Lawless, Thomas Michael AU - Archibald, Mandy AU - Pinero de Plaza, Alejandra Maria AU - Drioli-Phillips, Phoebe AU - Kitson, Alison PY - 2020/9/14 TI - Peer-to-Peer Health Communication in Older Adults? Online Communities: Protocol for a Qualitative Netnographic Study and Co-Design Approach JO - JMIR Res Protoc SP - e19834 VL - 9 IS - 9 KW - aged KW - chronic illness and disease KW - long-term conditions KW - self-management KW - peer support KW - social media KW - online community KW - netnography KW - co-design KW - COVID-19 N2 - Background: Online communities provide an environment in which people with similar health concerns can interact and access content that can support the self-management of long-term conditions (LTCs). Recently, the importance of online social networks as sources of health information and social support has been brought into focus with the emergence and widespread societal impacts of COVID-19. Although online communities exist for older adults, little is known about the specific health and self-care topics that older people discuss in such environments and how these relate to users? support needs and outcomes. A better understanding of users? needs and peer-to-peer communication in these communities is necessary to inform the design of information and communication technology (ICT) interventions that are relevant to older people and their peer supporters. Objective: This study aims to use a two-phase, web-based ethnographic (netnography) and co-design approach to explore specific health care and self-care topics that older adults discuss in a UK-based online community and how peer supporters respond to these queries with informational and/or social support and engage with stakeholders to define the needs and requirements for new ICT-based interventions capable of reducing social isolation and facilitating LTC self-management support. Methods: The first phase of the research will involve a qualitative netnographic analysis of posts in discussion forums in a publicly accessible online community. The second phase will involve co-design workshops with health care consumers (ie, older adults and carers) and service providers to determine the needs and requirements for new ICT-based interventions and digital innovations. Constructivist grounded theory will be used in the first phase; in the second phase, the co-design workshops will be audiorecorded and analyzed thematically. Results: This research project is in progress. Permission was obtained from the website administrator to use materials from the social media forum; data collection for the first phase began in April 2020. The second phase of the study is expected to begin in late 2020. This study is due to be completed by the end of 2021. Conclusions: This study is the first, to the best of our knowledge, to combine qualitative netnography with an iterative co-design framework to specify the needs and requirements for new ICT-based interventions. The findings from this study will inform the next phase of the multiphase knowledge translation project and will provide insights into the potential of online peer health communities to reduce social isolation and facilitate chronic illness self-management support and self-care. International Registered Report Identifier (IRRID): PRR1-10.2196/19834 UR - http://www.researchprotocols.org/2020/9/e19834/ UR - http://dx.doi.org/10.2196/19834 UR - http://www.ncbi.nlm.nih.gov/pubmed/32924960 ID - info:doi/10.2196/19834 ER - TY - JOUR AU - Song, Jiahe AU - Xu, Pei AU - Paradice, B. David PY - 2020/9/11 TI - Health Goal Attainment of Patients With Chronic Diseases in Web-Based Patient Communities: Content and Survival Analysis JO - J Med Internet Res SP - e19895 VL - 22 IS - 9 KW - web-based patient communities KW - self-reflection KW - social support KW - goal attainment KW - web-based chronic disease management KW - survival analysis N2 - Background: Activities directed at attaining health goals are a major part of the daily lives of those fighting chronic diseases. A proliferating population of patients with chronic diseases are participating in web-based patient communities, wherein they can exchange health information and pursue health goals with others virtually. Objective: In this study, we aimed to understand the effect of participation in social media?enabled web-based patient communities on health goal attainment. In particular, we studied the antecedents of health goal attainment in terms of social support and self-reflection in web-based patient communities. Methods: This data set consists of web-based health management activities of 392 patients across 13 health support groups, that is, groups with medical issues such as high blood pressure, diabetes, and breast cancer; the data of the activities were collected from a leading web-based patient community. Content analysis was used to code the social interactions among the patients on the web-based platform. Cox regression for survival analysis was used to model the hazard ratio of health goal attainment. Results: Our analysis indicated that emotional support from web-based patient communities can increase patients? probability of achieving their goals (hazard ratio 1.957, 95% CI 1.416-2.706; P<.001) while informational support does not appear to be effective (P=.06). In addition, health-related self-reflection increases the patients? likelihood of goal attainment through web-based patient communities (hazard ratio 1.937, 95% CI 1.318-2.848; P<.001), but leisure-oriented self-reflection reduces this likelihood (hazard ratio 0.588, 95% CI 0.442-0.784; P<.001). Conclusions: Social media?enabled web-based platforms assist health goal management via both social interaction and personal discipline. This study extends the understanding of web-based patient communities by investigating the effects of both social and cognitive factors on goal attainment. In particular, our study advocates that health goals relating to chronic conditions can be better managed when patients use the facilities of web-based health communities strategically. UR - http://www.jmir.org/2020/9/e19895/ UR - http://dx.doi.org/10.2196/19895 UR - http://www.ncbi.nlm.nih.gov/pubmed/32915152 ID - info:doi/10.2196/19895 ER - TY - JOUR AU - Chivers, R. Bonnie AU - Garad, M. Rhonda AU - Boyle, A. Jacqueline AU - Skouteris, Helen AU - Teede, J. Helena AU - Harrison, L. Cheryce PY - 2020/9/7 TI - Perinatal Distress During COVID-19: Thematic Analysis of an Online Parenting Forum JO - J Med Internet Res SP - e22002 VL - 22 IS - 9 KW - pregnancy KW - perinatal KW - maternal KW - COVID-19 KW - communication KW - social support KW - qualitative research KW - mental health KW - health information KW - online support KW - thematic analysis KW - sentiment analysis KW - word frequency N2 - Background: The COVID-19 global pandemic has impacted the whole of society, requiring rapid implementation of individual-, population-, and system-level public health responses to contain and reduce the spread of infection. Women in the perinatal period (pregnant, birthing, and postpartum) have unique and timely needs for directives on health, safety, and risk aversion during periods of isolation and physical distancing for themselves, their child or children, and other family members. In addition, they are a vulnerable group at increased risk of psychological distress that may be exacerbated in the context of social support deprivation and a high-risk external environment. Objective: The aim of this study is to examine the public discourse of a perinatal cohort to understand unmet health information and support needs, and the impacts on mothering identity and social dynamics in the context of COVID-19. Methods: A leading Australian online support forum for women pre- through to postbirth was used to interrogate all posts related to COVID-19 from January 27 to May 12, 2020, inclusive. Key search terms included ?COVID,? ?corona,? and ?pandemic.? A three-phase analysis was conducted, including thematic analysis, sentiment analysis, and word frequency calculations. Results: The search yielded 960 posts, of which 831 were included in our analysis. The qualitative thematic analysis demonstrated reasonable understanding, interpretation, and application of relevant restrictions in place, with five emerging themes identified. These were (1) heightened distress related to a high-risk external environment; (2) despair and anticipatory grief due to deprivation of social and family support, and bonding rituals; (3) altered family and support relationships; (4) guilt-tampered happiness; and (5) family future postponed. Sentiment analysis revealed that the content was predominantly negative (very negative: n=537 and moderately negative: n=443 compared to very positive: n=236 and moderately positive: n=340). Negative words were frequently used in the 831 posts with associated derivatives including ?worried? (n=165, 19.9%), ?risk? (n=143, 17.2%), ?anxiety? (n=98, 11.8%), ?concerns? (n=74, 8.8%), and ?stress? (n=69, 8.3%). Conclusions: Women in the perinatal period are uniquely impacted by the current pandemic. General information on COVID-19 safe behaviors did not meet the particular needs of this cohort. The lack of nuanced and timely information may exacerbate the risk of psychological and psychosocial distress in this vulnerable, high-risk group. State and federal public health departments need to provide a central repository of information that is targeted, consistent, accessible, timely, and reassuring. Compensatory social and emotional support should be considered, using alternative measures to mitigate the risk of mental health disorders in this cohort. UR - http://www.jmir.org/2020/9/e22002/ UR - http://dx.doi.org/10.2196/22002 UR - http://www.ncbi.nlm.nih.gov/pubmed/32857707 ID - info:doi/10.2196/22002 ER - TY - JOUR AU - Croucher, Lauren AU - Mertan, Elif AU - Shafran, Roz AU - Bennett, D. Sophie PY - 2020/9/3 TI - The Use of Mumsnet by Parents of Young People With Mental Health Needs: Qualitative Investigation JO - JMIR Ment Health SP - e18271 VL - 7 IS - 9 KW - mental health KW - parenting KW - internet KW - evidence-based medicine N2 - Background: There are high rates of mental health needs in children in the United Kingdom, and parents are increasingly seeking help for their children's needs. However, there is not enough access to child and adolescent mental health services and parents are seeking alternative forms of support and information, often from web-based sources. Mumsnet is the largest web-based parenting forum in the United Kingdom, which includes user-created discussions regarding child mental health. Objective: This qualitative investigation aimed to explore the emergent themes within the narratives of posts regarding child mental health on Mumsnet and to extrapolate these themes to understand the purpose of Mumsnet for parents of children and young people with mental health needs. Methods: A total of 50 threads from Mumsnet Talk Child Mental Health were extracted. Following the application of inclusion and exclusion criteria, 41 threads were analyzed thematically using the framework approach, a form of qualitative thematic analysis. Results: In total, 28 themes were extracted and organized into 3 domains. These domains were emotional support, emotional expression, and advice and information. The results suggested that parents of children with mental health needs predominantly use Mumsnet to offer and receive emotional support and to suggest general advice, techniques, and resources that could be applied outside of help from professional services. Conclusions: This paper discusses the future of health information seeking. Future research is required to establish initiatives in which web-based peer-to-peer support and information can supplement professional services to provide optimum support for parents of children with mental health needs. UR - https://mental.jmir.org/2020/9/e18271 UR - http://dx.doi.org/10.2196/18271 UR - http://www.ncbi.nlm.nih.gov/pubmed/32880583 ID - info:doi/10.2196/18271 ER - TY - JOUR AU - Wu, Nancy AU - Brazeau, Anne-Sophie AU - Nakhla, Meranda AU - Chan, Deborah AU - Da Costa, Deborah AU - Mukerji, Geetha AU - Butalia, Sonia AU - Pacaud, Daniele AU - Henderson, Mélanie AU - Panagiotopoulos, Constadina AU - Rahme, Elham AU - Dasgupta, Kaberi PY - 2020/8/31 TI - Type 1 Diabetes Mellitus Virtual Patient Network as a Peer Support Community: Protocol for Social Network Analysis and Content Analysis JO - JMIR Res Protoc SP - e18714 VL - 9 IS - 8 KW - type 1 diabetes KW - youth KW - social network analysis KW - content analysis KW - social media N2 - Background: Type 1 Diabetes Mellitus Virtual Patient Network (T1DM-VPN) is a private Facebook group for youths with type 1 diabetes mellitus (T1DM) in Canada intended to facilitate peer-to-peer support. It was built on the finding that stigma is prevalent among youth with T1DM and impedes self-management. Objective: We aim to determine if T1DM-VPN provides support as intended and to ascertain what type of members provide support. Specifically, we will (1) identify text consistent with any one of 5 social support categories, (2) describe the network by visualizing its structure and reporting basic engagement statistics, and (3) determine whether being a designated peer leader is related to a member?s centrality (ie, importance in the network) and how frequently they offer social support. Methods: We will manually extract interaction data from the Facebook group (posts, comments, likes/reactions, seen) generated from June 21, 2017 (addition of first member), to March 1, 2020. Two researchers will independently code posts and comments according to an existing framework of 5 social support categories?informational, emotional, esteem, network, and tangible?with an additional framework for nonsocial support categories. We will calculate how frequently each code is used. We will also report basic engagement statistics (eg, number of posts made per person-month) and generate a visualization of the network. We will identify stable time intervals in the history of T1DM-VPN by modeling monthly membership growth as a Poisson process. Within each interval, each member?s centrality will be calculated and standardized to that of the most central member. We will use a centrality formula that considers both breadth and depth of connections (centrality = 0.8 × total No. of connections + 0.2 × total No. of interactions). Finally, we will construct multivariate linear regression models to assess whether peer leader status predicts member centrality and the frequency of offering social support. Other variables considered for inclusion in the models are gender and age at diagnosis. Results: T1DM-VPN was launched in June 2017. As of March 1, 2020, it has 196 patient-members. This research protocol received ethics approval from the McGill University Health Centre Research Ethics Board on May 20, 2020. Baseline information about each group member was collected upon addition into the group, and collection of interaction data is ongoing as of May 2020. Conclusions: This content analysis and social network analysis study of a virtual patient network applies epidemiological methods to account for dynamic growth and activity. The results will allow for an understanding of the topics of importance to youth with T1DM and how a virtual patient network evolves over time. This work is intended to serve as a foundation for future action to help youth improve their experience of living with diabetes. International Registered Report Identifier (IRRID): PRR1-10.2196/18714 UR - http://www.researchprotocols.org/2020/8/e18714/ UR - http://dx.doi.org/10.2196/18714 UR - http://www.ncbi.nlm.nih.gov/pubmed/32865502 ID - info:doi/10.2196/18714 ER - TY - JOUR AU - Chen, Qin AU - Yan, Xiangbin AU - Zhang, Tingting PY - 2020/8/26 TI - Converting Visitors of Physicians? Personal Websites to Customers in Online Health Communities: Longitudinal Study JO - J Med Internet Res SP - e20623 VL - 22 IS - 8 KW - online health communities KW - conversion rate KW - multisource information KW - physician-generated information KW - patient-generated information KW - system-generated information KW - usage time N2 - Background: With the dramatic development of Web 2.0, increasing numbers of patients and physicians are actively involved in online health communities. Despite extensive research on online health communities, the conversion rate from visitor to customer and its driving factors have not been discussed. Objective: The aim of this study was to analyze the conversion rate of online health communities and to explore the effects of multisource online health community information, including physician-generated information, patient-generated information, and system-generated information. Methods: An empirical study was conducted to examine the effects of physician-generated, patient-generated, and system-generated information on the conversion rate of physicians? personal websites by analyzing short panel data from 2112 physicians over five time periods in a Chinese online health community. Results: Multisource online health community information (ie, physician-generated, patient-generated, and system-generated information) positively affected the conversion rate. Physician-generated and patient-generated information showed a substitute relationship rather than a complementary relationship. In addition, the usage time of a personal website positively moderated patient-generated information, but negatively moderated physician-generated information. Conclusions: This study contributes to the electronic health literature by investigating the conversion rate of online health communities and the effect of multisource online health community information. This study also contributes to understanding the drivers of conversion rate on service websites, which can help to successfully improve the efficiency of online health communities. UR - http://www.jmir.org/2020/8/e20623/ UR - http://dx.doi.org/10.2196/20623 UR - http://www.ncbi.nlm.nih.gov/pubmed/32845248 ID - info:doi/10.2196/20623 ER - TY - JOUR AU - Vasti, Elena AU - Pletcher, J. Mark PY - 2020/8/25 TI - Recruiting Student Health Coaches to Improve Digital Blood Pressure Management: Randomized Controlled Pilot Study JO - JMIR Form Res SP - e13637 VL - 4 IS - 8 KW - mobile health KW - hypertension KW - coaching KW - health-related behavior KW - mobile phone N2 - Background: Hypertension is a significant problem in the United States, affecting 1 in 3 adults aged above 18 years and is associated with a higher risk for cardiovascular disease and stroke. The prevalence of hypertension has increased in medically underserved areas (MUAs). Mobile health technologies, such as digital self-monitoring devices, have been shown to improve the management of chronic health conditions. However, patients from MUAs have reduced access to these devices because of limited resources and low health literacy. Health coaches and peer training programs are a potentially cost-effective solution for the shortage of physicians available to manage hypertension in MUAs. Activating young people as student health coaches (SHCs) is a promising strategy to improve community health. Objective: This pilot study aims to assess (1) the feasibility of training high school students as health technology coaches in MUAs and (2) whether the addition of SHCs to digital home monitoring improves the frequency of self-monitoring and overall blood pressure (BP) control. Methods: In total, 15 high school students completed 3-day health coach training. Patients who had a documented diagnosis of hypertension were randomly assigned to 1 of the 3 intervention arms. The QardioArm alone (Q) group was provided a QardioArm cuff only for convenience. The SHC alone (S) group was instructed to meet with a health coach for 30 min once a week for 5 weeks to create action plans for reducing BP. The student+QardioArm (S+Q) group received both interventions. Results: Participants (n=27) were randomly assigned to 3 groups in a ratio of 9:9:9. All 15 students completed training, of which 40% (6/15) of students completed all the 5 meetings with their assigned patient. Barriers to feasibility included transportation and patient response drop-off at the end of the study. Overall, 92% (11/12) of the students rated their experience as very good or higher and 69% (9/13) reported that this experience made them more likely to go into the medical field. There was a statistically significant difference in the frequency of cuff use (S+Q vs Q groups: 37 vs 17; P<.001). Participants in the S+Q group reported better BP control after the intervention compared with the other groups. The average BP at the end of the intervention was 145/84 (SD 9/18) mm Hg, 150/85 (SD 18/12) mm Hg, and 128/69 (SD 20/14) mm Hg in the Q, S, and S+Q groups, respectively. Conclusions: This pilot study demonstrates the feasibility of pairing technology with young student coaches, although challenges existed. The S+Q group used their cuff more than the Q group. Patients were more engaged in the S+Q group, reporting higher satisfaction with their SHC and better control of their BP. UR - https://formative.jmir.org/2020/8/e13637 UR - http://dx.doi.org/10.2196/13637 UR - http://www.ncbi.nlm.nih.gov/pubmed/32840489 ID - info:doi/10.2196/13637 ER - TY - JOUR AU - Yu, Yu AU - Li, Tongxin AU - Xi, Shijun AU - Li, Yilu AU - Xiao, Xi AU - Yang, Min AU - Ge, Xiaoping AU - Xiao, Shuiyuan AU - Tebes, Jacob PY - 2020/8/25 TI - Assessing a WeChat-Based Integrative Family Intervention (WIFI) for Schizophrenia: Protocol for a Stepped-Wedge Cluster Randomized Trial JO - JMIR Res Protoc SP - e18538 VL - 9 IS - 8 KW - schizophrenia KW - family intervention KW - WeChat KW - psychoeducation KW - peer support KW - professional support KW - stepped wedge N2 - Background: Schizophrenia is a persistent and debilitating mental illness, and its prognosis depends largely on supportive care and systematic treatment. In developing countries like China, families constitute the major caregiving force for schizophrenia and are faced with many challenges, such as lack of knowledge, skills, and resources. The approach to support family caregiving in an accessible, affordable, feasible, and cost-effective way remains unclear. The wide-spread use of WeChat provides a promising and cost-effective medium for support. Objective: We aim to present a protocol for assessing a WeChat-based integrative family intervention (WIFI) to support family caregiving for schizophrenia. Methods: We will develop a WIFI program that includes the following three core components: (1) psychoeducation (WeChat official account), (2) peer support (WeChat chat group), and (3) professional support (WeChat video chat). A rigorous stepped-wedge cluster randomized trial will be used to evaluate the implementation, effectiveness, and cost of the WIFI program. The WIFI program will be implemented in 12 communities affiliated with Changsha Psychiatric Hospital through the free medicine delivery process in the 686 Program. The 12 communities will be randomized to one of four fixed sequences every 2 months during an 8-month intervention period in four clusters of three communities each. Outcomes will be assessed for both family caregivers and people with schizophrenia. Family caregivers will be assessed for their knowledge and skills about caregiving, social support, coping, perceived stigma, caregiver burden, family functioning, positive feelings, and psychological distress. People with schizophrenia will be assessed for their symptoms, functioning, quality of life, recovery, and rehospitalization. Cost data, such as intervention costs, health care utilization costs, and costs associated with lost productivity, will be collected. Moreover, we will collect process data, including fidelity and quality of program implementation, as well as user attitude data. Treatment effects will be estimated using generalized linear maximum likelihood mixed modeling with clusters as a random effect and time as a fixed effect. Cost-effectiveness analysis will be performed from the societal perspective using incremental cost-effectiveness ratios. Qualitative analysis will use the grounded theory approach and immersion-crystallization process. Results: The study was funded in August 2018 and approved by the institutional review board on January 15, 2019. Preliminary baseline data collection was conducted in May 2019 and completed in September 2019. The WIFI program is expected to start in September 2020. Conclusions: This is the first study to assess a WeChat-based mHealth intervention to support family caregiving for schizophrenia in China. The innovative study will contribute to the development of a more cost-effective and evidence-based family management model in the community for people with schizophrenia, and the approach could potentially be integrated into national policy and adapted for use in other populations. Trial Registration: ClinicalTrials.gov NCT04393896; https://clinicaltrials.gov/ct2/show/NCT04393896. International Registered Report Identifier (IRRID): PRR1-10.2196/18538 UR - http://www.researchprotocols.org/2020/8/e18538/ UR - http://dx.doi.org/10.2196/18538 UR - http://www.ncbi.nlm.nih.gov/pubmed/32687478 ID - info:doi/10.2196/18538 ER - TY - JOUR AU - Roystonn, Kumarasan AU - Vaingankar, Ajit Janhavi AU - Chua, Yiang Boon AU - Sambasivam, Rajeswari AU - Shafie, Saleha AU - Jeyagurunathan, Anitha AU - Verma, Swapna AU - Abdin, Edimansyah AU - Chong, Ann Siow AU - Subramaniam, Mythily PY - 2020/8/4 TI - The Public Health Impact and Policy Implications of Online Support Group Use for Mental Health in Singapore: Cross-Sectional Survey JO - JMIR Ment Health SP - e18114 VL - 7 IS - 8 KW - online support group KW - internet KW - self-help KW - mental health treatment KW - mental illness KW - public health N2 - Background: The wide mental health treatment gap continues to pose a global and local public health challenge. Online support groups are on the rise and could be used to complement formal treatment services for mental health. Objective: This study aimed to examine the prevalence of online support group use and explore factors associated with the use in the general population using data from a national cross-sectional mental health survey in Singapore. Methods: Singapore residents aged 18 years and above participated in a nationally representative household survey in which the World Health Organization Composite International Diagnostic Interview 3.0 was administered by trained interviewers to examine the use of online support groups for mental health. Multiple logistic regressions were used to analyze the association of online support group use with various sociodemographic and health factors. Results: A total of 6110 respondents with complete data were included in this study. Overall, 10 individuals per 1000 adults (1%) reported seeking help from online support groups for their mental health problems. Compared to younger adults (those aged 18 to 34 years) and those with university education, individuals aged 50 to 64 years (P<.001; OR 0.1, 95% CI 0.0-0.3) and those with preuniversity qualifications (P=.02; OR 0.1, 95% CI 0.0-0.8) were less likely to use online support groups for mental health, respectively. Participants with a Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) mental disorder were 6.8 times more likely (P<.001; 95% CI 3.0-15.4) to use an online support group; in particular, individuals with major depressive disorder (P<.001; OR 5.4, 95% CI 2.1-13.8) and obsessive compulsive disorder (P=.01; OR 3.5, 95% CI 1.3-9.7) were more likely to use an online support group for their mental health. Conclusions: Online support groups could be used to complement formal treatment services, especially for mood and anxiety-related disorders. As online support group use for mental health issues may be more prevalent among younger people, early detection and accurate information in online support groups may guide individuals toward seeking professional help for their mental health problems. UR - https://mental.jmir.org/2020/8/e18114 UR - http://dx.doi.org/10.2196/18114 UR - http://www.ncbi.nlm.nih.gov/pubmed/32749231 ID - info:doi/10.2196/18114 ER - TY - JOUR AU - Peng, Li AU - Wang, Yanan AU - Chen, Jing PY - 2020/7/30 TI - Consequences of Gift Giving in Online Health Communities on Physician Service Quality: Empirical Text Mining Study JO - J Med Internet Res SP - e18569 VL - 22 IS - 7 KW - online health community KW - gift giving KW - affective/instrumental gifts KW - service quality KW - bedside manner KW - physicians KW - physician-patient relationship N2 - Background: Gift giving, which has been a heavily debated topic in health care for many years, is considered as a way of expressing gratitude and to be beneficial for the physician-patient relationship within a reasonable range. However, not much work has been done to examine the influence of gift giving on physicians? service quality, especially in the online health care environment. Objective: This study addressed the consequences of gift giving by mining and analyzing the dynamic physician-patient interaction processes in an online health community. Specifically, gift types (affective or instrumental) based on the motivations and physician-patient tie strength were carefully considered to account for differences in physicians? service quality. Methods: The dynamic interaction processes (involving 3154 gifts) between 267 physicians and 14,187 patients from a well-known online health community in China (haodf.com) were analyzed to obtain empirical results. Results: Our results reveal that patient gift giving inspires physicians to improve their service quality as measured by physicians? more detailed responses and improved bedside manner, and the degree of influence varied according to the strength of the physician-patient tie. Moreover, affective gifts and instrumental gifts had different effects in improving physicians? service quality online. Conclusions: This study is among the first to explore gift giving in online health communities providing both important theoretical and practical contributions. All of our results suggest that gift giving online is of great significance to promoting effective physician-patient communication and is conducive to the relief of physician-patient conflicts. UR - http://www.jmir.org/2020/7/e18569/ UR - http://dx.doi.org/10.2196/18569 UR - http://www.ncbi.nlm.nih.gov/pubmed/32729834 ID - info:doi/10.2196/18569 ER - TY - JOUR AU - Panzarasa, Pietro AU - Griffiths, J. Christopher AU - Sastry, Nishanth AU - De Simoni, Anna PY - 2020/7/28 TI - Social Medical Capital: How Patients and Caregivers Can Benefit From Online Social Interactions JO - J Med Internet Res SP - e16337 VL - 22 IS - 7 KW - online health communities KW - self-care KW - social networks KW - social capital KW - open and closed structures KW - social cohesion KW - brokerage UR - http://www.jmir.org/2020/7/e16337/ UR - http://dx.doi.org/10.2196/16337 UR - http://www.ncbi.nlm.nih.gov/pubmed/32720910 ID - info:doi/10.2196/16337 ER - TY - JOUR AU - Fortuna, L. Karen AU - Myers, L. Amanda AU - Walsh, Danielle AU - Walker, Robert AU - Mois, George AU - Brooks, M. Jessica PY - 2020/7/23 TI - Strategies to Increase Peer Support Specialists? Capacity to Use Digital Technology in the Era of COVID-19: Pre-Post Study JO - JMIR Ment Health SP - e20429 VL - 7 IS - 7 KW - COVID-19 KW - peer support KW - telemental health KW - mental health KW - training N2 - Background: Prior to the outbreak of coronavirus disease (COVID-19), telemental health to support mental health services was primarily designed for individuals with professional clinical degrees, such as psychologists, psychiatrists, registered nurses, and licensed clinical social workers. For the first the time in history, peer support specialists are offering Medicaid-reimbursable telemental health services during the COVID-19 crisis; however, little effort has been made to train peer support specialists on telehealth practice and delivery. Objective: The aim of this study was to explore the impact of the Digital Peer Support Certification on peer support specialists? capacity to use digital peer support technology. Methods: The Digital Peer Support Certification was co-produced with peer support specialists and included an education and simulation training session, synchronous and asynchronous support services, and audit and feedback. Participants included 9 certified peer support specialists between the ages of 25 and 54 years (mean 39 years) who were employed as peer support specialists for 1 to 11 years (mean 4.25 years) and had access to a work-funded smartphone device and data plan. A pre-post design was implemented to examine the impact of the Digital Peer Support Certification on peer support specialists? capacity to use technology over a 3-month timeframe. Data were collected at baseline, 1 month, 2 months, and 3 months. Results: Overall, an upward trend in peer support specialists? capacity to offer digital peer support occurred during the 3-month certification period. Conclusions: The Digital Peer Support Certification shows promising evidence of increasing the capacity of peer support specialists to use specific digital peer support technology features. Our findings also highlighted that this capacity was less likely to increase with training alone and that a combinational knowledge translation approach that includes both training and management will be more successful. UR - http://mental.jmir.org/2020/7/e20429/ UR - http://dx.doi.org/10.2196/20429 UR - http://www.ncbi.nlm.nih.gov/pubmed/32629424 ID - info:doi/10.2196/20429 ER - TY - JOUR AU - Pereira, Claudio Antonio Augusto AU - Destro, Regina Juliana AU - Picinin Bernuci, Marcelo AU - Garcia, França Lucas AU - Rodrigues Lucena, Franklin Tiago PY - 2020/7/21 TI - Effects of a WhatsApp-Delivered Education Intervention to Enhance Breast Cancer Knowledge in Women: Mixed-Methods Study JO - JMIR Mhealth Uhealth SP - e17430 VL - 8 IS - 7 KW - mHealth KW - WhatsApp KW - cancer education KW - breast cancer N2 - Background: Breast cancer is the leading cause of cancer-related death in the female population. Health education interventions based on the use of mobile technologies enable the development of health self-care skills and have emerged as alternative strategies for the control of breast cancer. In previous studies, WhatsApp has stood out as a useful tool in health education strategies; however, it has not yet been applied for breast cancer education. Objective: This study aimed to analyze the potential of WhatsApp as a health education tool used to improve women's knowledge on the risk reduction of breast cancer. It also aimed to understand how women feel sensitized within the WhatsApp group throughout the intervention and how they incorporate information posted to improve knowledge about early detection and risk reduction methods. Methods: The study involved a pre-post health educational intervention with 35 women (aged 45-69 years) included in a WhatsApp group to share information (audio, video, text, and images) over 3 weeks on the early detection and risk reduction of breast cancer. Data were collected through questionnaires on topics related to risk reduction, as well as qualitative content analysis of group interactions. Effectiveness and feasibility were analyzed through conversations and the comparison of the scores obtained in the questionnaires before and after the intervention. Results: A total of 293 messages were exchanged (moderator 120 and users 173). The average scores of the participants were 11.21 and 13.68 points before and after the educational intervention, respectively, with sufficient sample evidence that the difference was significant (P<.001). The intervention enabled women to improve their knowledge on all topics addressed, especially ?myths and truths,? ?incidence,? ?clinical manifestations,? and ?protective factors.? Some themes emerged from the interactions in the group, including group dynamics, general doubts, personal narratives, religious messages, daily news, and events. Conclusions: The use of groups for women in WhatsApp for health education purposes seems to be a viable alternative in strategies on breast cancer control, especially as it provides a space for the exchange of experiences and disinhibition. However, the need for a moderator to answer the questions and the constant distractions by members of the group represent important limitations that should be considered when improving this strategy. UR - http://mhealth.jmir.org/2020/7/e17430/ UR - http://dx.doi.org/10.2196/17430 UR - http://www.ncbi.nlm.nih.gov/pubmed/32706726 ID - info:doi/10.2196/17430 ER - TY - JOUR AU - James, Glen AU - Nyman, Elisabeth AU - Fitz-Randolph, Marcy AU - Niklasson, Anna AU - Hedman, Katarina AU - Hedberg, Jonatan AU - Wittbrodt, T. Eric AU - Medin, Jennie AU - Moreno Quinn, Carol AU - Allum, M. Alaster AU - Emmas, Cathy PY - 2020/7/15 TI - Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study JO - J Med Internet Res SP - e18548 VL - 22 IS - 7 KW - community networks KW - chronic kidney disease KW - real-world experience KW - patient experience KW - retrospective KW - observational KW - diabetes KW - interview KW - online KW - social media N2 - Background: Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. Objective: The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. Methods: Adult members (aged ?18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients? experiences with CKD and its management. Results: The retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care. Conclusions: This study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies. UR - http://www.jmir.org/2020/7/e18548/ UR - http://dx.doi.org/10.2196/18548 UR - http://www.ncbi.nlm.nih.gov/pubmed/32673242 ID - info:doi/10.2196/18548 ER - TY - JOUR AU - Robinson, Anna AU - Husband, K. Andrew AU - Slight, D. Robert AU - Slight, P. Sarah PY - 2020/7/15 TI - Digital Support for Patients Undergoing Bariatric Surgery: Narrative Review of the Roles and Challenges of Online Forums JO - JMIR Perioper Med SP - e17230 VL - 3 IS - 2 KW - bariatric surgery KW - online forums KW - patient support KW - digital support KW - eHealth KW - mHealth N2 - Background: The internet has become an important medium within health care, giving patients the opportunity to search for information, guidance, and support to manage their health and well-being needs. Online forums and internet-based platforms appear to have changed the way many patients undergoing bariatric surgery view and engage with their health, before and after weight loss surgery. Given that significant health improvements result from sustained weight loss, ensuring patient adherence to recommended preoperative and postoperative guidance is critical for bariatric surgery success. In a patient cohort with high information needs preoperatively, and notoriously high attrition rates postoperatively, online forums may present an underutilized method of support. Objective: The aim of this study was to conduct a narrative review focusing on the developing roles that online forums can play for patients with bariatric conditions preoperatively and postoperatively. Methods: A literature search was conducted in October-November 2019 across 5 electronic databases: Scopus, EMBASE, PsycINFO, CINAHL, and MEDLINE. Qualitative or mixed methods studies were included if they evaluated patients undergoing bariatric surgery (or bariatric surgery health care professionals) engaging with, using, or analyzing online discussion forums or social media platforms. Using thematic analysis, themes were developed from coding patterns within the data to identify the roles and challenges of online forums for patients undergoing bariatric surgery. Results: A total of 8 studies were included in this review, with 5 themes emerging around (1) managing expectations of a new life; (2) decision making and signposting; (3) supporting information seeking; (4) facilitating connectedness: peer-to-peer social and emotional support; and (5) enabling accessibility and connectivity with health care professionals. Conclusions: Online forums could offer one solution to improving postoperative success by supporting and motivating patients. Future research should consider how best to design and moderate online forums for maximal effectiveness and the sharing of accurate information. The surgical multidisciplinary team may consider recommendations of online peer-support networks to complement care for patients throughout their surgical journey. UR - https://periop.jmir.org/2020/2/e17230 UR - http://dx.doi.org/10.2196/17230 UR - http://www.ncbi.nlm.nih.gov/pubmed/33393926 ID - info:doi/10.2196/17230 ER - TY - JOUR AU - Green, M. Brian AU - Van Horn, Tente Katelyn AU - Gupte, Ketki AU - Evans, Megan AU - Hayes, Sara AU - Bhowmick, Amrita PY - 2020/7/7 TI - Assessment of Adaptive Engagement and Support Model for People With Chronic Health Conditions in Online Health Communities: Combined Content Analysis JO - J Med Internet Res SP - e17338 VL - 22 IS - 7 KW - social media KW - social support KW - health education KW - qualitative research KW - patient empowerment N2 - Background: With the pervasiveness of social media, online health communities (OHCs) are an important tool for facilitating information sharing and support among people with chronic health conditions. Importantly, OHCs offer insight into conversations about the lived experiences of people with particular health conditions. Little is known about the aspects of OHCs that are important to maintain safe and productive conversations that support health. Objective: This study aimed to assess the provision of social support and the role of active moderation in OHCs developed in accordance with and managed by an adaptive engagement model. This study also aimed to identify key elements of the model that are central to the development, maintenance, and adaptation of OHCs for people with chronic health conditions. Methods: This study used combined content analysis, a mixed methods approach, to analyze sampled Facebook post comments from 6 OHCs to understand how key aspects of the adaptive engagement model facilitate different types of social support. OHCs included in this study are for people living with multiple sclerosis, migraine, irritable bowel syndrome, rheumatoid arthritis, lung cancer, and prostate cancer. An exploratory approach was used in the analysis, and initial codes were grouped into thematic categories and then confirmed through thematic network analysis using the Dedoose qualitative analysis software tool. Thematic categories were compared for similarities and differences for each of the 6 OHCs and by topic discussed. Results: Data on the reach and engagement of the Facebook posts and the analysis of the sample of 5881 comments demonstrate that people with chronic health conditions want to engage on the web and find value in supporting and sharing their experiences with others. Most comments made in these Facebook posts were expressions of social support for others living with the same health condition (3405/5881, 57.89%). Among the comments with an element of support, those where community members validated the knowledge or experiences of others were most frequent (1587/3405, 46.61%), followed by the expression of empathy and understanding (1089/3405, 31.98%). Even among posts with more factual content, such as insurance coverage issues, user comments still had frequent expressions of support for others (80/213, 37.5%). Conclusions: The analysis of this OHC adaptive engagement model in action shows that the foundational elements?social support, engagement, and moderation?can effectively be used to provide a rich and dynamic community experience for individuals with chronic health conditions. Social support is demonstrated in a variety of ways, including sharing information or validating information shared by others, expressions of empathy, and sharing encouraging statements with others. UR - https://www.jmir.org/2020/7/e17338 UR - http://dx.doi.org/10.2196/17338 UR - http://www.ncbi.nlm.nih.gov/pubmed/32492651 ID - info:doi/10.2196/17338 ER - TY - JOUR AU - Du, Yan AU - Paiva, Kristi AU - Cebula, Adrian AU - Kim, Seon AU - Lopez, Katrina AU - Li, Chengdong AU - White, Carole AU - Myneni, Sahiti AU - Seshadri, Sudha AU - Wang, Jing PY - 2020/7/6 TI - Diabetes-Related Topics in an Online Forum for Caregivers of Individuals Living With Alzheimer Disease and Related Dementias: Qualitative Inquiry JO - J Med Internet Res SP - e17851 VL - 22 IS - 7 KW - diabetes KW - Alzheimer disease KW - dementia KW - caregivers N2 - Background: Diabetes and Alzheimer disease and related dementias (ADRD) are the seventh and sixth leading causes of death in the United States, respectively, and they coexist in many older adults. Caring for a loved one with both ADRD and diabetes is challenging and burdensome. Objective: This study aims to explore diabetes-related topics in the Alzheimer?s Association ALZConnected caregiver forum by family caregivers of persons living with ADRD. Methods: User posts on the Alzheimer?s Association ALZConnected caregiver forum were extracted. A total of 528 posts related to diabetes were included in the analysis. Of the users who generated the 528 posts, approximately 96.1% (275/286) were relatives of the care recipient with ADRD (eg, child, grandchild, spouse, sibling, or unspecified relative). Two researchers analyzed the data independently using thematic analysis. Any divergence was discussed among the research team, and an agreement was reached with a senior researcher?s input as deemed necessary. Results: Thematic analysis revealed 7 key themes. The results showed that comorbidities of ADRD were common topics of discussions among family caregivers. Diabetes management in ADRD challenged family caregivers. Family caregivers might neglect their own health care because of the caring burden, and they reported poor health outcomes and reduced quality of life. The online forum provided a platform for family caregivers to seek support in their attempts to learn more about how to manage the ADRD of their care recipients and seek support for managing their own lives as caregivers. Conclusions: The ALZConnected forum provided a platform for caregivers to seek informational and emotional support for caring for persons living with ADRD and diabetes. The overwhelming burdens with these two health conditions were apparent for both caregivers and care recipients based on discussions from the online forum. Studies are urgently needed to provide practical guidelines and interventions for diabetes management in individuals with diabetes and ADRD. Future studies to explore delivering diabetes management interventions through online communities in caregivers and their care recipients with ADRD and diabetes are warranted. UR - http://www.jmir.org/2020/7/e17851/ UR - http://dx.doi.org/10.2196/17851 UR - http://www.ncbi.nlm.nih.gov/pubmed/32628119 ID - info:doi/10.2196/17851 ER - TY - JOUR AU - Myneni, Sahiti AU - Lewis, Brittney AU - Singh, Tavleen AU - Paiva, Kristi AU - Kim, Min Seon AU - Cebula, V. Adrian AU - Villanueva, Gloria AU - Wang, Jing PY - 2020/6/30 TI - Diabetes Self-Management in the Age of Social Media: Large-Scale Analysis of Peer Interactions Using Semiautomated Methods JO - JMIR Med Inform SP - e18441 VL - 8 IS - 6 KW - diabetes KW - self-management KW - social media KW - digital health N2 - Background: Online communities have been gaining popularity as support venues for chronic disease management. User engagement, information exposure, and social influence mechanisms can play a significant role in the utility of these platforms. Objective: In this paper, we characterize peer interactions in an online community for chronic disease management. Our objective is to identify key communications and study their prevalence in online social interactions. Methods: The American Diabetes Association Online community is an online social network for diabetes self-management. We analyzed 80,481 randomly selected deidentified peer-to-peer messages from 1212 members, posted between June 1, 2012, and May 30, 2019. Our mixed methods approach comprised qualitative coding and automated text analysis to identify, visualize, and analyze content-specific communication patterns underlying diabetes self-management. Results: Qualitative analysis revealed that ?social support? was the most prevalent theme (84.9%), followed by ?readiness to change? (18.8%), ?teachable moments? (14.7%), ?pharmacotherapy? (13.7%), and ?progress? (13.3%). The support vector machine classifier resulted in reasonable accuracy with a recall of 0.76 and precision 0.78 and allowed us to extend our thematic codes to the entire data set. Conclusions: Modeling health-related communication through high throughput methods can enable the identification of specific content related to sustainable chronic disease management, which facilitates targeted health promotion. UR - https://medinform.jmir.org/2020/6/e18441 UR - http://dx.doi.org/10.2196/18441 UR - http://www.ncbi.nlm.nih.gov/pubmed/32602843 ID - info:doi/10.2196/18441 ER - TY - JOUR AU - Si, Yan AU - Wu, Hong AU - Liu, Qing PY - 2020/6/29 TI - Factors Influencing Doctors? Participation in the Provision of Medical Services Through Crowdsourced Health Care Information Websites: Elaboration-Likelihood Perspective Study JO - JMIR Med Inform SP - e16704 VL - 8 IS - 6 KW - crowdsourcing KW - crowdsourced medical services KW - online health communities KW - doctors? participation KW - elaboration-likelihood model N2 - Background: Web-based crowdsourcing promotes the goals achieved effectively by gaining solutions from public groups via the internet, and it has gained extensive attention in both business and academia. As a new mode of sourcing, crowdsourcing has been proven to improve efficiency, quality, and diversity of tasks. However, little attention has been given to crowdsourcing in the health sector. Objective: Crowdsourced health care information websites enable patients to post their questions in the question pool, which is accessible to all doctors, and the patients wait for doctors to respond to their questions. Since the sustainable development of crowdsourced health care information websites depends on the participation of the doctors, we aimed to investigate the factors influencing doctors? participation in providing health care information in these websites from the perspective of the elaboration-likelihood model. Methods: We collected 1524 questions with complete patient-doctor interaction processes from an online health community in China to test all the hypotheses. We divided the doctors into 2 groups based on the sequence of the answers: (1) doctor who answered the patient?s question first and (2) the doctors who answered that question after the doctor who answered first. All analyses were conducted using the ordinary least squares method. Results: First, the ability of the doctor who first answered the health-related question was found to positively influence the participation of the following doctors who answered after the first doctor responded to the question (?offline1=.177, P<.001; ?offline2=.063, P=.048; ?online=.418, P<.001). Second, the reward that the patient offered for the best answer showed a positive effect on doctors? participation (?=.019, P<.001). Third, the question?s complexity was found to positively moderate the relationships between the ability of the first doctor who answered and the participation of the following doctors (?=.186, P=.05) and to mitigate the effect between the reward and the participation of the following doctors (?=?.003, P=.10). Conclusions: This study has both theoretical and practical contributions. Online health community managers can build effective incentive mechanisms to encourage highly competent doctors to participate in the provision of medical services in crowdsourced health care information websites and they can increase the reward incentives for each question to increase the participation of the doctors. UR - http://medinform.jmir.org/2020/6/e16704/ UR - http://dx.doi.org/10.2196/16704 UR - http://www.ncbi.nlm.nih.gov/pubmed/32597787 ID - info:doi/10.2196/16704 ER - TY - JOUR AU - Pan, Wenjing AU - Feng, Bo AU - Shen, Cuihua PY - 2020/6/24 TI - Examining Social Capital, Social Support, and Language Use in an Online Depression Forum: Social Network and Content Analysis JO - J Med Internet Res SP - e17365 VL - 22 IS - 6 KW - social capital KW - social support KW - social network analysis KW - computerized text analysis KW - communication accommodation KW - language style matching KW - online support forums KW - depression KW - mental health N2 - Background: The use of peer-to-peer online support groups and communities has grown into a social phenomenon. Many people use online support groups and communities to seek and provide social support. It is essential to examine how users? participation behaviors may contribute to different outcomes. Objective: This study aimed to (1) use the structural positions of online depression forum users in their reply network to predict received support and (2) examine their language use reflecting their health conditions. Methods: A total of 2061 users and their 62,274 replies posted on a depression forum from July 2004 to July 2014 were extracted using a web crawler written in Python. The content of the forum users? posts and replies and their reply patterns were examined. A social network analysis method was used to build the reply networks of users. The computerized text analysis method was used to measure features of the forum users? language styles. Results: Forum users? bridging social capital (operationalized as network betweenness) was positively associated with the level of communication accommodation in their received replies (P=.04). Forum users? bonding social capital (operationalized as network constraint) was negatively associated with the level of communication accommodation in their received replies (P<.001). The forum users? change in their use of self-referent words and words expressing negative emotions were examined as linguistic proxies for their health conditions and mental states. The results revealed a general negative association between the number of received replies and the degree of decrease in the use of words expressing negative emotion (P=.007). Conclusions: The structural positions of online depression forum users in the reply network are associated with different participation outcomes in the users. Thus, receiving replies can be beneficial to online depression forum users. UR - https://www.jmir.org/2020/6/e17365 UR - http://dx.doi.org/10.2196/17365 UR - http://www.ncbi.nlm.nih.gov/pubmed/32579125 ID - info:doi/10.2196/17365 ER - TY - JOUR AU - De Simoni, Anna AU - Shah, T. Anjali AU - Fulton, Olivia AU - Parkinson, Jasmine AU - Sheikh, Aziz AU - Panzarasa, Pietro AU - Pagliari, Claudia AU - Coulson, S. Neil AU - Griffiths, J. Chris PY - 2020/6/23 TI - Superusers? Engagement in Asthma Online Communities: Asynchronous Web-Based Interview Study JO - J Med Internet Res SP - e18185 VL - 22 IS - 6 KW - social networks KW - eHealth KW - social media KW - peer-to-peer support KW - social support KW - online health communities KW - online forums KW - superusers KW - leadership KW - misinformation KW - asthma KW - self-management N2 - Background: Superusers, defined as the 1% of users who write a large number of posts, play critical roles in online health communities (OHCs), catalyzing engagement and influencing other users? self-care. Their unique online behavior is key to sustaining activity in OHCs and making them flourish. Our previous work showed the presence of 20 to 30 superusers active on a weekly basis among 3345 users in the nationwide Asthma UK OHC and that the community would disintegrate if superusers were removed. Recruiting these highly skilled individuals for research purposes can be challenging, and little is known about superusers. Objective: This study aimed to explore superusers? motivation to actively engage in OHCs, the difficulties they may face, and their interactions with health care professionals (HCPs). Methods: An asynchronous web-based structured interview study was conducted. Superusers of the Asthma UK OHC and Facebook groups were recruited through Asthma UK staff to pilot and subsequently complete the questionnaire. Open-ended questions were analyzed using content analysis. Results: There were 17 superusers recruited for the study (14 patients with asthma and 3 carers); the majority were female (15/17). The age range of participants was 18 to 75 years. They were active in OHCs for 1 to 6 years and spent between 1 and 20 hours per week reading and 1 and 3 hours per week writing posts. Superusers? participation in OHCs was prompted by curiosity about asthma and its medical treatment and by the availability of spare time when they were off work due to asthma exacerbations or retired. Their engagement increased over time as participants furthered their familiarity with the OHCs and their knowledge of asthma and its self-management. Financial or social recognition of the superuser role was not important; their reward came from helping and interacting with others. According to the replies provided, they showed careful judgment to distinguish what can be dealt with through peer advice and what needs input from HCPs. Difficulties were encountered when dealing with misunderstandings about asthma and its treatment, patients not seeking advice from HCPs when needed, and miracle cures or dangerous ideas. Out of 17 participants, only 3 stated that their HCPs were aware of their engagement with OHCs. All superusers thought that HCPs should direct patients to OHCs, provided they are trusted and moderated. In addition, 9 users felt that HCPs themselves should take part in OHCs. Conclusions: Superusers from a UK-wide online community are highly motivated, altruistic, and mostly female individuals who exhibit judgment about the complexity of coping with asthma and the limits of their advice. Engagement with OHCs satisfies their psychosocial needs. Future research should explore how to address their unmet needs, their interactions with HCPs, and the potential integration of OHCs in traditional healthcare. UR - http://www.jmir.org/2020/6/e18185/ UR - http://dx.doi.org/10.2196/18185 UR - http://www.ncbi.nlm.nih.gov/pubmed/32573463 ID - info:doi/10.2196/18185 ER - TY - JOUR AU - Chen, T. Annie AU - Slattery, Krystal AU - Tomasino, N. Kathryn AU - Rubanovich, Kseniya Caryn AU - Bardsley, R. Leland AU - Mohr, C. David PY - 2020/6/16 TI - Challenges and Benefits of an Internet-Based Intervention With a Peer Support Component for Older Adults With Depression: Qualitative Analysis of Textual Data JO - J Med Internet Res SP - e17586 VL - 22 IS - 6 KW - aged KW - depression KW - internet KW - peer group KW - social support KW - qualitative research N2 - Background: Technological interventions provide many opportunities for improving the health and quality of life of older adults. However, interaction with new technologies can also cause frustration. Although these themes have been explored in extant research, much remains to be learned with regard to how the challenges of aging and technology use and the experiences of participating in a social and learning environment are interrelated. Objective: This study aimed to perform a qualitative analysis of data collected from MoodTech, a pilot study of an internet-based intervention with a peer support component for older adults with symptoms of depression, to better understand the participants? experience of using technological interventions, including the challenges and benefits that they experienced over the course of these interventions. Methods: We employed an inductive qualitative analysis method based on grounded theory methodology and interpretative phenomenological analysis to analyze participant textual data. These textual data were of 3 main types: (1) assignments in which participants challenged their negative thoughts, (2) status updates, and (3) comments in the peer support component of the intervention. Results: We have presented the results through 3 main themes: (1) the challenges of aging as seen through the participants? comments, (2) the difficulties experienced by the participants in using MoodTech, and (3) the benefits they derived from participating. Conclusions: This paper offers several contributions concerning study participants? experiences with internet-based cognitive behavioral therapy (iCBT) interventions with a peer support component and design considerations for developing complex technological interventions that support the challenges participants experience due to aging and cognitive difficulties. First, technical issues encountered by older adults within the context of the intervention can interact with and exacerbate the insecurities they experience in life, and it is important to consider how intervention components might be designed to mitigate these issues. Second, peer support can be employed as a mechanism to facilitate communication, support, and collaborative problem solving among participants in an intervention. The insights from this paper can inform the design of iCBT interventions for older adults. UR - https://www.jmir.org/2020/6/e17586 UR - http://dx.doi.org/10.2196/17586 UR - http://www.ncbi.nlm.nih.gov/pubmed/32543448 ID - info:doi/10.2196/17586 ER - TY - JOUR AU - Shalaby, Hameed Reham A. AU - Agyapong, O. Vincent I. PY - 2020/6/9 TI - Peer Support in Mental Health: Literature Review JO - JMIR Ment Health SP - e15572 VL - 7 IS - 6 KW - peer support KW - peer support workers KW - mental illness and addiction KW - social support KW - literature review N2 - Background: A growing gap has emerged between people with mental illness and health care professionals, which in recent years has been successfully closed through the adoption of peer support services (PSSs). Peer support in mental health has been variously defined in the literature and is simply known as the help and support that people with lived experience of mental illness or a learning disability can give to one another. Although PSSs date back to several centuries, it is only in the last few decades that these services have formally evolved, grown, and become an integral part of the health care system. Debates around peer support in mental health have been raised frequently in the literature. Although many authors have emphasized the utmost importance of incorporating peer support into the health care system to instill hope; to improve engagement, quality of life, self-confidence, and integrity; and to reduce the burden on the health care system, other studies suggest that there are neutral effects from integrating PSSs into health care systems, with a probable waste of resources. Objective: In this general review, we aimed to examine the literature, exploring the evolution, growth, types, function, generating tools, evaluation, challenges, and the effect of PSSs in the field of mental health and addiction. In addition, we aimed to describe PSSs in different, nonexhaustive contexts, as shown in the literature, that aims to draw attention to the proposed values of PSSs in such fields. Methods: The review was conducted through a general search of the literature on MEDLINE, Google Scholar, EMBASE, Scopus, Chemical Abstracts, and PsycINFO. Search terms included peer support, peer support in mental health, social support, peer, family support, and integrated care. Results: There is abundant literature defining and describing PSSs in different contexts as well as tracking their origins. Two main transformational concepts have been described, namely, intentional peer support and transformation from patients to peer support providers. The effects of PSSs are extensive and integrated into different fields, such as forensic PSSs, addiction, and mental health, and in different age groups and mental health condition severity. Satisfaction of and challenges to PSS integration have been clearly dependent on a number of factors and consequently impact the future prospect of this workforce. Conclusions: There is an internationally growing trend to adopt PSSs within addiction and mental health services, and despite the ongoing challenges, large sections of the current literature support the inclusion of peer support workers in the mental health care workforce. The feasibility and maintenance of a robust PSS in health care would only be possible through collaborative efforts and ongoing support and engagement from all health care practitioners, managers, and other stakeholders. UR - https://mental.jmir.org/2020/6/e15572 UR - http://dx.doi.org/10.2196/15572 UR - http://www.ncbi.nlm.nih.gov/pubmed/32357127 ID - info:doi/10.2196/15572 ER - TY - JOUR AU - Liu, Yang AU - Yin, Zhijun PY - 2020/6/8 TI - Understanding Weight Loss via Online Discussions: Content Analysis of Reddit Posts Using Topic Modeling and Word Clustering Techniques JO - J Med Internet Res SP - e13745 VL - 22 IS - 6 KW - weight loss KW - online health community KW - machine learning KW - topic modeling KW - word2vec KW - hierarchical clustering KW - consumer health N2 - Background: Maintaining a healthy weight can reduce the risk of developing many diseases, including type 2 diabetes, hypertension, and certain types of cancers. Online social media platforms are popular among people seeking social support regarding weight loss and sharing their weight loss experiences, which provides opportunities for learning about weight loss behaviors. Objective: This study aimed to investigate the extent to which the content posted by users in the r/loseit subreddit, an online community for discussing weight loss, and online interactions were associated with their weight loss in terms of the number of replies and votes that these users received. Methods: All posts that were published before January 2018 in r/loseit were collected. We focused on users who revealed their start weight, current weight, and goal weight and were active in this online community for at least 30 days. A topic modeling technique and a hierarchical clustering algorithm were used to obtain both global topics and local word semantic clusters. Finally, we used a regression model to learn the association between weight loss and topics, word semantic clusters, and online interactions. Results: Our data comprised 477,904 posts that were published by 7660 users within a span of 7 years. We identified 25 topics, including food and drinks, calories, exercises, family members and friends, and communication. Our results showed that the start weight (?=.823; P<.001), active days (?=.017; P=.009), and median number of votes (?=.263; P=.02), mentions of exercises (?=.145; P<.001), and nutrition (?=.120; P<.001) were associated with higher weight loss. Users who lost more weight might be motivated by the negative emotions (?=?.098; P<.001) that they experienced before starting the journey of weight loss. In contrast, users who mentioned vacations (?=?.108; P=.005) and payments (?=?.112; P=.001) tended to experience relatively less weight loss. Mentions of family members (?=?.031; P=.03) and employment status (?=?.041; P=.03) were associated with less weight loss as well. Conclusions: Our study showed that both online interactions and offline activities were associated with weight loss, suggesting that future interventions based on existing online platforms should focus on both aspects. Our findings suggest that online personal health data can be used to learn about health-related behaviors effectively. UR - https://www.jmir.org/2020/6/e13745 UR - http://dx.doi.org/10.2196/13745 UR - http://www.ncbi.nlm.nih.gov/pubmed/32510460 ID - info:doi/10.2196/13745 ER - TY - JOUR AU - Luo, Aijing AU - Xin, Zirui AU - Yuan, Yifeng AU - Wen, Tingxiao AU - Xie, Wenzhao AU - Zhong, Zhuqing AU - Peng, Xiaoqing AU - Ouyang, Wei AU - Hu, Chao AU - Liu, Fei AU - Chen, Yang AU - He, Haiyan PY - 2020/5/29 TI - Multidimensional Feature Classification of the Health Information Needs of Patients With Hypertension in an Online Health Community Through Analysis of 1000 Patient Question Records: Observational Study JO - J Med Internet Res SP - e17349 VL - 22 IS - 5 KW - online health community KW - health information needs KW - patients with hypertension KW - physician-patient communication N2 - Background: With the rapid development of online health communities, increasing numbers of patients and families are seeking health information on the internet. Objective: This study aimed to discuss how to fully reveal the health information needs expressed by patients with hypertension in their questions in a web-based environment and how to use the internet to help patients with hypertension receive personalized health education. Methods: This study randomly selected 1000 text records from the question data of patients with hypertension from 2008 to 2018 collected from Good Doctor Online and constructed a classification system through literature research and content analysis. This paper identified the background characteristics and questioning intention of each patient with hypertension based on the patient?s question and used co-occurrence network analysis and the k-means clustering method to explore the features of the health information needs of patients with hypertension. Results: The classification system for the health information needs of patients with hypertension included the following nine dimensions: drugs (355 names), symptoms and signs (395 names), tests and examinations (545 names), demographic data (526 kinds), diseases (80 names), risk factors (37 names), emotions (43 kinds), lifestyles (6 kinds), and questions (49 kinds). There were several characteristics of the explored web-based health information needs of patients with hypertension. First, more than 49% of patients described features, such as drugs, symptoms and signs, tests and examinations, demographic data, and diseases. Second, patients with hypertension were most concerned about treatment (778/1000, 77.80%), followed by diagnosis (323/1000, 32.30%). Third, 65.80% (658/1000) of patients asked physicians several questions at the same time. Moreover, 28.30% (283/1000) of patients were very concerned about how to adjust the medication, and they asked other treatment-related questions at the same time, including drug side effects, whether to take the drugs, how to treat the disease, etc. Furthermore, 17.60% (176/1000) of patients consulted physicians about the causes of clinical findings, including the relationship between the clinical findings and a disease, the treatment of a disease, and medications and examinations. Fourth, by k-means clustering, the questioning intentions of patients with hypertension were classified into the following seven categories: ?how to adjust medication,? ?what to do,? ?how to treat,? ?phenomenon explanation,? ?test and examination,? ?disease diagnosis,? and ?disease prognosis.? Conclusions: In a web-based environment, the health information needs expressed by Chinese patients with hypertension to physicians are common and distinct, that is, patients with different background features ask relatively common questions to physicians. The classification system constructed in this study can provide guidance to health information service providers for the construction of web-based health resources, as well as guidance for patient education, which could help solve the problem of information asymmetry in communication between physicians and patients. UR - http://www.jmir.org/2020/5/e17349/ UR - http://dx.doi.org/10.2196/17349 UR - http://www.ncbi.nlm.nih.gov/pubmed/32469318 ID - info:doi/10.2196/17349 ER - TY - JOUR AU - Rivas, Ryan AU - Shahbazi, Moloud AU - Garett, Renee AU - Hristidis, Vagelis AU - Young, Sean PY - 2020/5/29 TI - Mental Health?Related Behaviors and Discussions Among Young Adults: Analysis and Classification JO - J Med Internet Res SP - e17224 VL - 22 IS - 5 KW - social media KW - data analysis KW - supervised machine learning KW - universities KW - students N2 - Background: There have been recurring reports of web-based harassment and abuse among adolescents and young adults through anonymous social networks. Objective: This study aimed to explore discussions on the popular anonymous social network Yik Yak related to social and mental health messaging behaviors among college students, including cyberbullying, to provide insights into mental health behaviors on college campuses. Methods: From April 6, 2016, to May 7, 2016, we collected anonymous conversations posted on Yik Yak at 19 universities in 4 different states and performed statistical analyses and text classification experiments on a subset of these messages. Results: We found that prosocial messages were 5.23 times more prevalent than bullying messages. The frequency of cyberbullying messages was positively associated with messages seeking emotional help. We found significant geographic variation in the frequency of messages offering supportive vs bullying messages. Across campuses, bullying and political discussions were positively associated. We also achieved a balanced accuracy of over 0.75 for most messaging behaviors and topics with a support vector machine classifier. Conclusions: Our results show that messages containing data about students? mental health?related attitudes and behaviors are prevalent on anonymous social networks, suggesting that these data can be mined for real-time analysis. This information can be used in education and health care services to better engage with students, provide insight into conversations that lead to cyberbullying, and reach out to students who need support. UR - http://www.jmir.org/2020/5/e17224/ UR - http://dx.doi.org/10.2196/17224 UR - http://www.ncbi.nlm.nih.gov/pubmed/32469317 ID - info:doi/10.2196/17224 ER - TY - JOUR AU - Dang, Yuanyuan AU - Guo, Shanshan AU - Guo, Xitong AU - Vogel, Doug PY - 2020/5/21 TI - Privacy Protection in Online Health Communities: Natural Experimental Empirical Study JO - J Med Internet Res SP - e16246 VL - 22 IS - 5 KW - online health community KW - privacy protection KW - professional health care knowledge N2 - Background: An online health community (OHC) is a novel sharing channel through which doctors share professional health care knowledge with patients. While doctors have the authority to protect their patients? privacy in OHCs, we have limited information on how doctors? privacy protection choices affect their professional health care knowledge sharing with patients. Objective: We examined the relationship between privacy protection and professional health care knowledge sharing in OHCs. Specifically, we examined the effects of privacy protection settings in an OHC on doctors? interactive professional health care knowledge sharing and searching professional health care knowledge sharing (two dimensions of professional health care knowledge sharing). Moreover, we explored how such effects differ across different levels of disease stigma. Methods: We collected the monthly panel data of 19,456 doctors from Good Doctor, one of the largest OHCs in China, from January 2008 to April 2016. A natural experimental empirical study with difference-in-difference analysis was conducted to test our hypotheses. The time fixed effect and the individual fixed effect were both considered to better identify the effects of a privacy protection setting on professional health care knowledge sharing. Additionally, a cross-sectional analysis was performed for a robust check. Results: The results indicate that the privacy protection setting has a significant positive effect on interactive professional health care knowledge sharing (?=.123, P<.001). However, the privacy protection setting has a significant negative effect on searching professional health care knowledge sharing (?=?.225, P=.05). Moreover, we found that high disease stigma positively impacts the effect of privacy protection on interactive professional health care knowledge sharing (coefficients are in the same valence) and negatively impacts the effects of privacy protection on searching professional health care knowledge sharing (coefficients are in the reverse valence). Conclusions: Privacy protection has a bilateral effect on professional health care knowledge sharing (ie, a positive effect on interactive professional health care knowledge sharing and a negative effect on searching professional health care knowledge sharing). Such bilateral switches of professional health care knowledge sharing call for a balanced state in conjunction with practical implications. This research also identifies a moderate effect of disease stigma on privacy protection settings and professional health care knowledge sharing. UR - http://www.jmir.org/2020/5/e16246/ UR - http://dx.doi.org/10.2196/16246 UR - http://www.ncbi.nlm.nih.gov/pubmed/32436851 ID - info:doi/10.2196/16246 ER - TY - JOUR AU - Howard, Derek AU - Maslej, M. Marta AU - Lee, Justin AU - Ritchie, Jacob AU - Woollard, Geoffrey AU - French, Leon PY - 2020/5/13 TI - Transfer Learning for Risk Classification of Social Media Posts: Model Evaluation Study JO - J Med Internet Res SP - e15371 VL - 22 IS - 5 KW - triage KW - classification KW - natural language processing KW - transfer learning KW - machine learning KW - data interpretation, statistical KW - mental health KW - social support N2 - Background: Mental illness affects a significant portion of the worldwide population. Online mental health forums can provide a supportive environment for those afflicted and also generate a large amount of data that can be mined to predict mental health states using machine learning methods. Objective: This study aimed to benchmark multiple methods of text feature representation for social media posts and compare their downstream use with automated machine learning (AutoML) tools. We tested on datasets that contain posts labeled for perceived suicide risk or moderator attention in the context of self-harm. Specifically, we assessed the ability of the methods to prioritize posts that a moderator would identify for immediate response. Methods: We used 1588 labeled posts from the Computational Linguistics and Clinical Psychology (CLPsych) 2017 shared task collected from the Reachout.com forum. Posts were represented using lexicon-based tools, including Valence Aware Dictionary and sEntiment Reasoner, Empath, and Linguistic Inquiry and Word Count, and also using pretrained artificial neural network models, including DeepMoji, Universal Sentence Encoder, and Generative Pretrained Transformer-1 (GPT-1). We used Tree-based Optimization Tool and Auto-Sklearn as AutoML tools to generate classifiers to triage the posts. Results: The top-performing system used features derived from the GPT-1 model, which was fine-tuned on over 150,000 unlabeled posts from Reachout.com. Our top system had a macroaveraged F1 score of 0.572, providing a new state-of-the-art result on the CLPsych 2017 task. This was achieved without additional information from metadata or preceding posts. Error analyses revealed that this top system often misses expressions of hopelessness. In addition, we have presented visualizations that aid in the understanding of the learned classifiers. Conclusions: In this study, we found that transfer learning is an effective strategy for predicting risk with relatively little labeled data and noted that fine-tuning of pretrained language models provides further gains when large amounts of unlabeled text are available. UR - https://www.jmir.org/2020/5/e15371 UR - http://dx.doi.org/10.2196/15371 UR - http://www.ncbi.nlm.nih.gov/pubmed/32401222 ID - info:doi/10.2196/15371 ER - TY - JOUR AU - Evans, William AU - Andrade, Elizabeth AU - Pratt, Michaela AU - Mottern, Alexandra AU - Chavez, Sergio AU - Calzetta-Raymond, Anthony AU - Gu, Jiayan PY - 2020/5/6 TI - Peer-to-Peer Social Media as an Effective Prevention Strategy: Quasi-Experimental Evaluation JO - JMIR Mhealth Uhealth SP - e16207 VL - 8 IS - 5 KW - social media KW - substance use KW - prevention KW - marijuana KW - opioids KW - adolescent health N2 - Background: Substance use by adolescents remains to be at unacceptably high levels, and there is evidence that teens? social norms are becoming more favorable toward recreational use and perceived safety of substances such as marijuana and prescription opioids. Social media offer a low-cost, potentially high-impact approach to disseminate prevention messages. Objective: Living the Example (LTE) is a program that trains adolescent youth ambassadors to develop and disseminate prevention messages within their own social media networks and through in-school activities. This study aimed to evaluate the effects of exposure to LTE-based social media on students in the youth ambassadors? networks. Methods: The George Washington (GW) University designed and implemented a quasi-experimental evaluation of the LTE program in 3 Maryland high schools. Before program launch, a sample of 826 students (wave 1) at the 3 schools, drawn from a census of freshmen enrolled in a class attended by all students at the grade level, completed a survey. A total of 584 students were surveyed at the wave 2 program midpoint and 542 at the wave 3 endpoint. The survey contained questions on drug use?related attitudes, beliefs, intentions, and behaviors, all based on validated measures. We evaluated the effects of LTE on the intended next 30-day drug use, and controlling for LTE self-reported exposure, age, and gender from waves 2 and 3 was appended into a single dataset. We first conducted ordinal logistic regressions for each drug use intention in wave 3 (ie, sell or distribute illegal drugs, smoke cigarettes, drink beer/wine/hard liquor when parents do not know about it, use marijuana, use lysergic acid diethylamide, cocaine, amphetamines or other illegal drugs, use heroin, use synthetic drugs, and use any prescription pills without a prescription) to examine the association between LTE exposure and drug use intentions. We included an interaction term for the study wave to examine intervention effects. Results: We found a significant positive effect of LTE exposure on all 8 measured drug use intentions: sell/distribute illegal drugs; smoke cigarettes; drink beer, wine, or liquor when my parents do not know about it; use marijuana; use cocaine, amphetamines, or other illegal drug; use heroin; use synthetic drugs; use any prescription pills without a prescription (all P<.05; odds ratios ranging from 2.12 to 3.71). We also found that boys were more likely than girls to exhibit reduced drug use intentions. We also found reductions in 30-day intentions between the second and third survey waves for all 8 measured drug use variables. Conclusions: Overall, the results are consistent with and indicate a stronger LTE effect in this study compared with a previous pilot study. LTE appears to offer a protective effect, with exposure to program messages leading to reduced/improved drug use intentions. UR - https://mhealth.jmir.org/2020/5/e16207 UR - http://dx.doi.org/10.2196/16207 UR - http://www.ncbi.nlm.nih.gov/pubmed/32374270 ID - info:doi/10.2196/16207 ER - TY - JOUR AU - Wang, Yanan AU - Wu, Hong AU - Xia, Chenxi AU - Lu, Naiji PY - 2020/5/5 TI - Impact of the Price of Gifts From Patients on Physicians? Service Quality in Online Consultations: Empirical Study Based on Social Exchange Theory JO - J Med Internet Res SP - e15685 VL - 22 IS - 5 KW - gift giving KW - gift price KW - service price KW - online consultation service quality KW - information support KW - emotional support KW - online health communities N2 - Background: Gift giving from patients to physicians, which is prohibited in traditional clinical settings in China, has been found to occur in online health communities. However, there is debate on the validity of online gifts since physicians gain an economic benefit. Moreover, the potential impact of these gifts, particularly with respect to the financial value of the gift, on the online consultation service quality remains unexplored. Objective: The aim of this study was to explore the impact of gift price on the quality of physicians? online consultation service. Insight into this impact is expected to help resolve existing debate on the appropriateness of the gift-giving practice in online consultations. Methods: A dataset of 141 physicians and 4249 physician-patient interactions was collected from the Good Physician Online website, which is the largest online consultation platform in China. Based on social exchange theory, we investigated how gift price affects the quality of physicians? online consultation service and how this impact changes according to the physician?s service price and number of all gifts received. Manual annotation was used to identify the information support paragraphs and emotional support paragraphs in the answers of physicians. The quality of the information support paragraphs, rather than the complete answer, was used to test the robustness of our model. Results: Gift price had a positive impact on the quality of physicians? online consultation service (?=4.941, P<.01). This impact was negatively mediated by both the physician?s service price (?=?9.245, P<.001) and the total number of gifts they received (?=?5.080, P<.001). Conclusions: Gift price has a positive impact on physicians? online behavior, although the impact varies among physicians. UR - http://www.jmir.org/2020/5/e15685/ UR - http://dx.doi.org/10.2196/15685 UR - http://www.ncbi.nlm.nih.gov/pubmed/32369028 ID - info:doi/10.2196/15685 ER - TY - JOUR AU - Hong, Minjoo AU - De Gagne, C. Jennie AU - Shin, Hyewon AU - Kwon, Suhye AU - Choi, Gum-Hee PY - 2020/5/5 TI - The Korean Version of the Academic Cyberincivility Assessment Questionnaire for Nursing Students in South Korea: Validity and Reliability Study JO - J Med Internet Res SP - e15668 VL - 22 IS - 5 KW - cybercivility KW - health professions education KW - nursing students KW - social media KW - web-based learning N2 - Background: Cybercivility, the practice of what to say and how to say it in online environments, encourages individuals to treat each other with respect. However, the anonymity of online communities may lead some individuals to behave in ways that violate social and cultural norms. These individuals treat others with a lack of regard and even bully others in faceless online confrontations. This practice of cyberincivility can be found across the internet, on commercial sites, and in schools offering online courses. Research on cybercivility and cyberincivility has increased in the United States, where instruments have been developed to measure the impact of cyberincivility in health profession education. However, there is no available instrument that measures nursing students? online behaviors in South Korea. Objective: The aim of this study was to develop and evaluate a Korean version of the Academic Cyberincivility Assessment Questionnaire developed in the United States. Methods: Data were collected from 213 nursing students in three South Korean colleges. The Academic Cyberincivility Assessment Questionnaire developed by De Gagne and colleagues was adapted to measure students? knowledge of cybercivility, and their experiences with and acceptability of cyberincivility. Content validity was tested using the content validity index (CVI). Criterion validity was tested using the digital citizenship scale. Reliability was evaluated using Cronbach alpha. The goodness-of-fit of construct validity was determined through exploratory and confirmatory factor analyses. Results: The CVI was 0.8 or higher for all items. Kuder?Richardson Formula 20, measuring reliability of the knowledge scale, was 0.22 and Cronbach alpha, measuring reliability of the experience scale, was .96. The goodness-of-fit of the model was Chi square=5568.63 (P<.001), the comparative fit index (CFI) was 0.92, and the root mean square error of approximation (RMSEA) was 0.08, which satisfied the criteria. The reliability of the acceptability scale was .96, and the goodness-of-fit indices satisfied the criteria (minimum Chi square/df=2.34, Tucker-Lewis Index =0.92, incremental fit index=0.93, root mean square residual=0.05, CFI=0.93, and RMSEA=0.08). Conclusions: This study extended and reevaluated the US version of cybercivility scales in a culturally distinct context. The three dimensions of cybercivility include knowledge, experience, and acceptability. Acceptability is well-validated as a dimension, whereas the knowledge dimension requires reexamination for application to Koreans. A revision of the instrument is needed that considers the cultural differences between South Korea and the United States. This paper calls for more attention to be paid to contextualized cybercivility scales among health professions in countries outside the United States. UR - https://www.jmir.org/2020/5/e15668 UR - http://dx.doi.org/10.2196/15668 UR - http://www.ncbi.nlm.nih.gov/pubmed/32369027 ID - info:doi/10.2196/15668 ER - TY - JOUR AU - Rezaei Aghdam, Atae AU - Watson, Jason AU - Cliff, Cynthia AU - Miah, Jahan Shah PY - 2020/4/24 TI - Improving the Theoretical Understanding Toward Patient-Driven Health Care Innovation Through Online Value Cocreation: Systematic Review JO - J Med Internet Res SP - e16324 VL - 22 IS - 4 KW - value cocreation KW - health care organizations KW - digital health platforms KW - online health communities KW - patient empowerment N2 - Background: Patient participation in the health care domain has surged dramatically through the availability of digital health platforms and online health communities (OHCs). Such patient-driven service innovation has both potential and challenges for health care organizations. Over the last 5 years, articles have surfaced that focus on value cocreation in health care services and the importance of engaging patients and other actors in service delivery. However, a theoretical understanding of how to use OHCs for this purpose is still underdeveloped within the health care service ecosystem. Objective: This paper aimed to introduce a theoretical discussion for better understanding of the potential of OHCs for health care organizations, in particular, for patient empowerment. Methods: This literature review study involved a comprehensive search using 12 electronic databases (EMBASE, PsycINFO, Web of Science, Scopus, ScienceDirect, Medical Literature Analysis and Retrieval System Online, PubMed, Elton B Stephens Co [academic], Cumulative Index of Nursing and Allied Health Literature, Accelerated Information Sharing for Law Enforcement, Association for Computing Machinery, and Google Scholar) from 2013 to 2019. A total of 1388 studies were identified from the database search. After removing duplicates and applying inclusion criteria, we thematically analyzed 56 articles using the Braun and Clarke thematic analysis approach. Results: We identified a list of 5 salient themes: communication extension, improved health literacy for patients and health care organizations, communication transparency with patients, informational and social support for patients, and patient empowerment in self-management. The most frequent theme was communication extension, which covers 39% (22/56) of the literature. This theme reported that an extension of communication between patients, caregivers, and physicians and organizations led to new opportunities to create value with minimal time and cost restrictions. Improved health literacy and communication transparency with patients were the second and third most frequent themes, respectively, covering 26% (15/56) and 25% (14/56) of the literature, respectively. The frequency of these themes indicated that the use of OHCs to generate new knowledge from patients? interactions helped health care organizations to customize treatment plans and establish transparent and effective communication between health care organizations and patients. Furthermore, of the 56 studies, 13 (23%) and 10 (17%) studies contended the opportunity of using OHCs in terms of informational and emotional support and empowering patients in their self-management of diseases. Conclusions: This review enables better understanding of the current state of the art of the online value cocreation and its potential for health care organizations. This study found that the opportunities for health care organizations through enhancement of patient participation and their cocreation of value in digital health platforms have been rapidly increasing. The identified gaps and opportunities in this study would identify avenues for future directions in modernized and more effective value-oriented health care informatics research. UR - http://www.jmir.org/2020/4/e16324/ UR - http://dx.doi.org/10.2196/16324 UR - http://www.ncbi.nlm.nih.gov/pubmed/32329736 ID - info:doi/10.2196/16324 ER - TY - JOUR AU - Maclachlan, R. Liam AU - Mills, Kathryn AU - Lawford, J. Belinda AU - Egerton, Thorlene AU - Setchell, Jenny AU - Hall, M. Leanne AU - Plinsinga, L. Melanie AU - Besomi, Manuela AU - Teo, Ling Pek AU - Eyles, P. Jillian AU - Mellor, Rebecca AU - Melo, Luciano AU - Robbins, Sarah AU - Hodges, W. Paul AU - Hunter, J. David AU - Vicenzino, Bill AU - Bennell, L. Kim PY - 2020/4/24 TI - Design, Delivery, Maintenance, and Outcomes of Peer-to-Peer Online Support Groups for People With Chronic Musculoskeletal Disorders: Systematic Review JO - J Med Internet Res SP - e15822 VL - 22 IS - 4 KW - social support KW - musculoskeletal diseases KW - online social networking KW - empowerment N2 - Background: Online support groups (OSGs) are one way for people with chronic diseases, their family or friends, and health professionals to communicate, gain information, and provide social support. As the number of peer-to-peer OSGs for chronic musculoskeletal conditions grows, it is important to gain insight into the different designs of groups available, who is accessing them, if and how they may be effective, and what strategies are being used to implement or increase consumer engagement. Objective: The objectives of this systematic review of people with musculoskeletal conditions were to (1) describe the design features (functions, usage options, moderation, and expert input) of peer-to-peer OSGs, (2) describe the characteristics of the individuals using peer-to-peer OSGs, (3) synthesize the evidence on outcomes of participation, and (4) identify strategies used in the delivery and maintenance of OSGs. Methods: A search comprising terms related to the population (people with musculoskeletal disorders) and the intervention (peer-to-peer OSGs) was conducted in 6 databases. Results were filtered from 1990 (internet inception) to February 2019. Studies identified in the search were screened according to predefined eligibility criteria using a 2-step process. Quantitative studies were appraised by 2 reviewers using the Risk Of Bias In Non-Randomized Studies of Interventions tool. Qualitative studies were appraised by 2 different reviewers using the Critical Appraisal Skills Programme checklist. Extracted data were synthesized narratively. Results: We examined 21 studies with low to moderate risk of bias. Of these studies, 13 studies included OSGs hosted on public platforms, 11 studies examined OSGs that were conducted in English, and 6 studies used moderators or peer leaders to facilitate engagement. Studies either reported the number of OSG members (n=1985 across all studies) or the number of posts (range: 223-200,000). The majority of OSG members were females who were not full-time employees and with varied levels of education. There were no randomized controlled trials measuring the efficacy of OSGs. Qualitative and quantitative studies identified empowerment, social support, self-management behavior, and health literacy as primary constructs to measure OSG efficacy. Neutral or marginal improvement was reported in these constructs. Sharing experiences and a greater level of engagement appeared to have an important influence on OSGs efficacy. The extent to which members posted on the website influenced engagement. Conclusions: Across a diverse range of designs, languages, included features, and delivery platforms, peer-to-peer OSGs for chronic musculoskeletal conditions attract predominantly female participants of all ages and education levels. The level of participation of a member appears to be related to their perceived benefit, health literacy, and empowerment. Future studies are needed to identify which design and maintenance strategies have superior efficacy and whether there are concomitant improvements in health outcomes for people with chronic musculoskeletal conditions resulting from participation in OSGs. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42018090326; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018090326 UR - http://www.jmir.org/2020/4/e15822/ UR - http://dx.doi.org/10.2196/15822 UR - http://www.ncbi.nlm.nih.gov/pubmed/32329746 ID - info:doi/10.2196/15822 ER - TY - JOUR AU - Trail, Thomas AU - Friedman, Esther AU - Rutter, M. Carolyn AU - Tanielian, Terri PY - 2020/4/23 TI - The Relationship Between Engagement in Online Support Groups and Social Isolation Among Military Caregivers: Longitudinal Questionnaire Study JO - J Med Internet Res SP - e16423 VL - 22 IS - 4 KW - caregivers KW - family caregivers KW - social isolation KW - loneliness KW - depression KW - social support KW - online intervention KW - self-help groups KW - veterans health N2 - Background: There is a lack of research on the effectiveness of online peer support groups for reducing social isolation and depressive symptoms among caregivers, and previous research has mixed results. Objective: This study aimed to test whether military caregivers who joined a new online peer support community or engaged with an existing online community experienced decreased perceived social isolation and improved depressive symptoms over 6 months. Methods: We conducted a longitudinal study of 212 military caregivers who had newly joined an online community and those who were members of other military caregiver groups. Multiple indicators of perceived social isolation and depressive symptoms were assessed at baseline and at 3 and 6 months. Results: Compared with caregivers in the comparison group, caregivers who joined the new group experienced less perceived social isolation at 3 months (eg, number of caregivers in social network [unstandardized regression coefficients] b=0.49, SE 0.19, 95% CI 0.87 to 0.02), but this effect did not persist at 6 months. Those who engaged more with new or existing groups experienced less perceived social isolation over time (eg, number of caregivers in social network b=0.18, SE 0.06, 95% CI 0.02 to 0.27), and this relationship was mediated by increased interactions with other military caregivers (95% CI 0.0046 to 0.0961). Engagement with an online group was not associated with improvements in depressive symptoms. Conclusions: Online communities might help reduce social isolation when members engage with the group, but more intensive treatment is needed to improve depressive symptoms. UR - http://www.jmir.org/2020/4/e16423/ UR - http://dx.doi.org/10.2196/16423 UR - http://www.ncbi.nlm.nih.gov/pubmed/32324141 ID - info:doi/10.2196/16423 ER - TY - JOUR AU - Fortuna, L. Karen AU - Naslund, A. John AU - LaCroix, M. Jessica AU - Bianco, L. Cynthia AU - Brooks, M. Jessica AU - Zisman-Ilani, Yaara AU - Muralidharan, Anjana AU - Deegan, Patricia PY - 2020/4/3 TI - Digital Peer Support Mental Health Interventions for People With a Lived Experience of a Serious Mental Illness: Systematic Review JO - JMIR Ment Health SP - e16460 VL - 7 IS - 4 KW - peer support KW - digital mental health KW - recovery N2 - Background: Peer support is recognized globally as an essential recovery service for people with mental health conditions. With the influx of digital mental health services changing the way mental health care is delivered, peer supporters are increasingly using technology to deliver peer support. In light of these technological advances, there is a need to review and synthesize the emergent evidence for peer-supported digital health interventions for adults with mental health conditions. Objective: The aim of this study was to identify and review the evidence of digital peer support interventions for people with a lived experience of a serious mental illness. Methods: This systematic review was conducted using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) procedures. The PubMed, Embase, Web of Science, Cochrane Central, CINAHL, and PsycINFO databases were searched for peer-reviewed articles published between 1946 and December 2018 that examined digital peer support interventions for people with a lived experience of a serious mental illness. Additional articles were found by searching the reference lists from the 27 articles that met the inclusion criteria and a Google Scholar search in June 2019. Participants, interventions, comparisons, outcomes, and study design (PICOS) criteria were used to assess study eligibility. Two authors independently screened titles and abstracts, and reviewed all full-text articles meeting the inclusion criteria. Discrepancies were discussed and resolved. All included studies were assessed for methodological quality using the Methodological Quality Rating Scale. Results: A total of 30 studies (11 randomized controlled trials, 2 quasiexperimental, 15 pre-post designs, and 2 qualitative studies) were included that reported on 24 interventions. Most of the studies demonstrated feasibility, acceptability, and preliminary effectiveness of peer-to-peer networks, peer-delivered interventions supported with technology, and use of asynchronous and synchronous technologies. Conclusions: Digital peer support interventions appear to be feasible and acceptable, with strong potential for clinical effectiveness. However, the field is in the early stages of development and requires well-powered efficacy and clinical effectiveness trials. Trial Registration: PROSPERO CRD42020139037; https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID= 139037 UR - https://mental.jmir.org/2020/4/e16460 UR - http://dx.doi.org/10.2196/16460 UR - http://www.ncbi.nlm.nih.gov/pubmed/32243256 ID - info:doi/10.2196/16460 ER - TY - JOUR AU - Zhu, Panpan AU - Shen, Jiang AU - Xu, Man PY - 2020/4/1 TI - Patients? Willingness to Share Information in Online Patient Communities: Questionnaire Study JO - J Med Internet Res SP - e16546 VL - 22 IS - 4 KW - online patient community KW - information sharing KW - willingness to share KW - questionnaire KW - structural equation N2 - Background: Online patient communities provide new channels for users to access and share medical information. In-depth study of users? willingness to share information in online patient communities is of great significance for improving the level of information sharing among the patient community and the long-term development of communities. Objective: The aim of this study was to build a model of factors affecting patients? willingness to share medical information from the perspective of both positive and negative utilities. Specifically, we aimed to determine the influence of online information support and privacy concerns, as well as the moderating effect of disease severity and information sensitivity of different patients on their willingness to share. Methods: Data from 490 users with experience in online patient communities were collected through a questionnaire survey, and structural equations were applied to empirically verify the model hypotheses. Results: Privacy concerns negatively affected the patients? willingness to share information (P<.001), whereas online information support positively affected patients? willingness to share information (P<.001), and information sensitivity negatively moderated the impact of online information support on sharing willingness (P=.01). Disease severity positively moderated the impact of privacy concerns on sharing willingness (P=.05). However, the hypotheses that information sensitivity is a negative moderator and disease severity is a positive moderator of the impact of privacy concerns on sharing willingness could not be supported. Conclusions: To improve the level of user information sharing, the online patient community should design a safe user registration process, ensure the confidentiality of information, reduce the privacy concerns of users, and accurately identify the information needs of patients to provide personalized support services. UR - https://www.jmir.org/2020/4/e16546 UR - http://dx.doi.org/10.2196/16546 UR - http://www.ncbi.nlm.nih.gov/pubmed/32234698 ID - info:doi/10.2196/16546 ER - TY - JOUR AU - Skousen, Tanner AU - Safadi, Hani AU - Young, Colleen AU - Karahanna, Elena AU - Safadi, Sami AU - Chebib, Fouad PY - 2020/3/17 TI - Successful Moderation in Online Patient Communities: Inductive Case Study JO - J Med Internet Res SP - e15983 VL - 22 IS - 3 KW - online patient communities KW - online social support KW - online community moderation KW - community management N2 - Background: Online patient communities are becoming more prevalent as a resource to help patients take control of their health. However, online patient communities experience challenges that require active moderation. Objective: This study aimed to identify the challenges of sustaining a thriving online patient community and the moderation practices employed to address the challenges and manage the online patient community successfully. Methods: An inductive case study of Mayo Clinic Connect was analyzed using the grounded theory methodology. Insights for the analysis were obtained from semistructured interviews with community managers and community members. Secondary data sources, such as community management documents, observational meeting notes, and community postings, were used to validate and triangulate the findings. Results: We identified four challenges unique to online patient communities. These challenges include passion, nonmedical advice, personal information, and community participation. We identified five categories of practices that community members used to address these challenges and moderate the community successfully. These practices include instructive, semantic, connective, administrative, and policing practices. Conclusions: Successful moderation in online patient communities requires a multitude of practices to manage the challenges that arise in these communities. Some practices are implemented as preventive measures while other practices are more interventive. Additionally, practices can come from both authority figures and exemplary members. UR - http://www.jmir.org/2020/3/e15983/ UR - http://dx.doi.org/10.2196/15983 UR - http://www.ncbi.nlm.nih.gov/pubmed/32181743 ID - info:doi/10.2196/15983 ER - TY - JOUR AU - Hibbert, Alice AU - Vesala, Markku AU - Kerr, Micky AU - Fackrell, Kathryn AU - Harrison, Stephen AU - Smith, Harriet AU - Hall, Ann Deborah PY - 2020/1/7 TI - Defining Symptom Concepts in Chronic Subjective Tinnitus: Web-Based Discussion Forum Study JO - Interact J Med Res SP - e14446 VL - 9 IS - 1 KW - patient outcome assessment KW - treatment outcome KW - concept formation KW - qualitative research KW - patient participation KW - community participation KW - stakeholder participation KW - Web social networking N2 - Background: A minimum standard based upon consensus decision making recommends a core set of tinnitus-specific health complaints (outcome domains) that should be assessed and reported in all clinical trials as this enables comparisons to be made across studies as well as data pooling for meta-analysis. Objective: This study aimed to further clarify how the outcome domain concepts should be defined for 5 of the core set: tinnitus intrusiveness, sense of control, acceptance of tinnitus, concentration, and ability to ignore. This step requires a clear and fully elaborated definition for each outcome domain, moving from an abstract or a vague concept to an operationalized and measurable health-related construct, so that a suitable measurement instrument can then be identified. Methods: A series of 5 focus group?style semistructured discussions were conducted via a Web-based discussion forum, each open for 2 weeks and ending with a vote. The participants included 148 tinnitus experts who completed a preceding e-Delphi survey that had generated the original set of minimum standards. The participants were health care users living with tinnitus, health care professionals, clinical researchers, commercial representatives, and funders. Results: The Web discussions led to a revision of all 5 original plain language definitions that had been used in the preceding e-Delphi survey. Each revised definition was voted by 8 to 53 participants and reached the prespecified threshold of 70% consensus for all except tinnitus intrusiveness. Although a single definition was not agreed upon for tinnitus intrusiveness, the majority of participants shared the view that the concept should be sufficiently broad to encapsulate a range of subdomains. The examples included tinnitus awareness, unpleasantness, and impact on different aspects of everyday life. Thematic analysis of the 5 Web-based discussion threads gave important insights into expert interpretations of each core outcome domain, generating an operationalized and measurable health construct in each case. Conclusions: The qualitative data gathered during the Web-based discussion forum provided an important in-depth understanding of the health concepts that had raised a debate during earlier face-to-face meetings. The descriptive summaries and definitions provide sufficient operationalization of those concepts to proceed to the second stage of core outcome set development that is to identify and evaluate suitable measurement instruments. This study supports the use of Web-based peer discussion forums in defining health concepts. UR - https://www.i-jmr.org/2020/1/e14446 UR - http://dx.doi.org/10.2196/14446 UR - http://www.ncbi.nlm.nih.gov/pubmed/31909716 ID - info:doi/10.2196/14446 ER - TY - JOUR AU - Hua, My AU - Sadah, Shouq AU - Hristidis, Vagelis AU - Talbot, Prue PY - 2020/1/3 TI - Health Effects Associated With Electronic Cigarette Use: Automated Mining of Online Forums JO - J Med Internet Res SP - e15684 VL - 22 IS - 1 KW - electronic cigarettes KW - vaping epidemic KW - vaping-associated pulmonary illness KW - e-cigarettes KW - electronic nicotine delivery devices KW - health effects KW - nicotine KW - symptoms KW - disorders KW - pulmonary disease KW - pneumonia KW - headaches KW - content analysis KW - text classification KW - e-cigarette, or vaping, product use associated lung injury N2 - Background: Our previous infodemiological study was performed by manually mining health-effect data associated with electronic cigarettes (ECs) from online forums. Manual mining is time consuming and limits the number of posts that can be retrieved. Objective: Our goal in this study was to automatically extract and analyze a large number (>41,000) of online forum posts related to the health effects associated with EC use between 2008 and 2015. Methods: Data were annotated with medical concepts from the Unified Medical Language System using a modified version of the MetaMap tool. Of over 1.4 million posts, 41,216 were used to analyze symptoms (undiagnosed conditions) and disorders (physician-diagnosed terminology) associated with EC use. For each post, sentiment (positive, negative, and neutral) was also assigned. Results: Symptom and disorder data were categorized into 12 organ systems or anatomical regions. Most posts on symptoms and disorders contained negative sentiment, and affected systems were similar across all years. Health effects were reported most often in the neurological, mouth and throat, and respiratory systems. The most frequently reported symptoms and disorders were headache (n=939), coughing (n=852), malaise (n=468), asthma (n=916), dehydration (n=803), and pharyngitis (n=565). In addition, users often reported linked symptoms (eg, coughing and headache). Conclusions: Online forums are a valuable repository of data that can be used to identify positive and negative health effects associated with EC use. By automating extraction of online information, we obtained more data than in our prior study, identified new symptoms and disorders associated with EC use, determined which systems are most frequently adversely affected, identified specific symptoms and disorders most commonly reported, and tracked health effects over 7 years. UR - https://www.jmir.org/2020/1/e15684 UR - http://dx.doi.org/10.2196/15684 UR - http://www.ncbi.nlm.nih.gov/pubmed/31899452 ID - info:doi/10.2196/15684 ER - TY - JOUR AU - Olsen, Alicia AU - Keogh, Justin AU - Sargeant, Sally PY - 2019/12/16 TI - Investigating How Bowel Cancer Survivors Discuss Exercise and Physical Activity Within Web-Based Discussion Forums: Qualitative Analysis JO - J Med Internet Res SP - e13929 VL - 21 IS - 12 KW - exercise KW - physical activity KW - cancer KW - qualitative research KW - patient portals KW - internet N2 - Background: Online cancer support group discussions enable patients to share their illness experience with others. The sharing of technical and emotional support information and the ability to ask for advice are some of the primary discussions shared online. People with bowel cancer can also use these forums to support each other by sharing information based on personal experiences. This type of support provides newly diagnosed patients with advice about several topics, including exercise from those who have been there. Information gathered from online discussion boards may complement the advice received by health professionals. Objective: This study aimed to explore the nature of information related to exercise and physical activity exchanged online for cancer survivors. Methods: A public open access bowel cancer discussion board was searched for threads containing information related to physical activity or exercise. Keywords such as exercise, physical activity, moving, walking, lifting, weights training, and resistance were used to search for threads (online conversations) related to exercise or physical activity. Only threads initiated by bowel cancer patients or survivors were included. From more than 6000 posts, the inclusion criteria yielded 75 threads for analysis. Inductive thematic analysis was conducted across all included threads. Results: Analysis yielded 3 main themes: level of exercise competence, beneficial dimensions of exercise, and faith in the knowledge. Level of exercise competence illustrated the varying definitions of exercise that members of the forum discussed in the forum. Beneficial dimensions of exercise revealed that forum members shared both the spiritual benefits associated with exercise as well as the physical benefits or goodness that they feel exercise or physical activity provides them. Faith in the knowledge of exercise demonstrated that forum members were aware of the general benefits of exercise but felt disappointed that it did not keep the cancer at bay. However, members also had faith that exercise would keep them healthy after diagnosis and treatment. Conclusions: The analysis revealed that people with bowel cancer discuss exercise and physical activity online and that they view exercise as having a mostly positive influence on their cancer journey. However, personal definitions of exercise became a source of conflict within the group. People with bowel cancer seeking information about exercise may benefit from participating in online support groups as it appears that there are many similar others willing to share their personal experiences with exercise. In addition, health care professionals responsible for caring for people with bowel cancer may use these findings to discuss exercise with their patients while being mindful of how they may view exercise. UR - https://www.jmir.org/2019/12/e13929 UR - http://dx.doi.org/10.2196/13929 UR - http://www.ncbi.nlm.nih.gov/pubmed/31841117 ID - info:doi/10.2196/13929 ER - TY - JOUR AU - Plinsinga, Louise Melanie AU - Besomi, Manuela AU - Maclachlan, Liam AU - Melo, Luciano AU - Robbins, Sarah AU - Lawford, J. Belinda AU - Teo, Ling Pek AU - Mills, Kathryn AU - Setchell, Jenny AU - Egerton, Thorlene AU - Eyles, Jillian AU - Hall, Leanne AU - Mellor, Rebecca AU - Hunter, J. David AU - Hodges, Paul AU - Vicenzino, Bill AU - Bennell, Kim PY - 2019/12/3 TI - Exploring the Characteristics and Preferences for Online Support Groups: Mixed Method Study JO - J Med Internet Res SP - e15987 VL - 21 IS - 12 KW - osteoarthritis KW - self-help groups KW - self-management KW - surveys and questionnaires N2 - Background: Osteoarthritis (OA) is a chronic, disabling, and prevalent disorder. As there is no cure for OA, long-term self-management is paramount. Support groups (SGs) can facilitate self-management among people living with OA. Understanding preferences in design and features of SGs, including online SGs (OSGs), among people with OA can inform future development of SG interventions for this condition. Objective: The objective of this study was to investigate health care? and health information?seeking behavior, digital literacy, and preferences for the design of SGs in people with OA. The study also explored the perceived barriers and enablers to being involved in OSGs. Methods: An online survey study was conducted with a mixed method design (quantitative and qualitative). Individuals aged ?45 years with knee, hip, or back pain for ?3 months were recruited from an extant patient database of the Institute of Bone and Joint Research via email invitations. Quantitative elements of the survey included questions about sociodemographic background; health care? and health information?seeking behavior; digital literacy; and previous participation in, and preferences for, SGs and OSGs. Respondents were classified into 2 groups (Yes-SG and No-SG) based on previous participation or interest in an SG. Group differences were assessed with Chi-square tests (significance level set at 5%). Responses to free-text questions relating to preferences regarding OSG engagement were analyzed qualitatively using an inductive thematic analysis. Results: A total of 415 people with OA completed the survey (300/415, 72.3% females; 252/415, 61.0% lived in a major city). The Yes-SG group included 307 (307/415, 73.9%) participants. Between the Yes-SG and No-SG groups, there were no differences in sociodemographic characteristics, health care? and health information?seeking behavior, and digital literacy. An online format was preferred by 126/259 (48.7%) of the Yes-SG group. Trained peer facilitators were preferred, and trustworthiness of advice and information were highly prioritized by the respondents. Qualitative analysis for OSG participation revealed 5 main themes. Lack of time and motivation were the main barriers identified. The main enablers were related to accessibility, enjoyment of the experience, and the content of the discussed information. Conclusions: These findings highlight the preferences in design features and content of SGs and OSGs and may assist in the further development of such groups. UR - https://www.jmir.org/2019/12/e15987 UR - http://dx.doi.org/10.2196/15987 UR - http://www.ncbi.nlm.nih.gov/pubmed/31793893 ID - info:doi/10.2196/15987 ER - TY - JOUR AU - Lu, Wei AU - Wu, Hong PY - 2019/12/2 TI - How Online Reviews and Services Affect Physician Outpatient Visits: Content Analysis of Evidence From Two Online Health Care Communities JO - JMIR Med Inform SP - e16185 VL - 7 IS - 4 KW - online health care communities KW - online reviews KW - online services KW - outpatient care KW - channel effect KW - patient choice N2 - Background: Online healthcare communities are changing the ways of physician-patient communication and how patients choose outpatient care physicians. Although a majority of empirical work has examined the role of online reviews in consumer decisions, less research has been done in health care, and endogeneity of online reviews has not been fully considered. Moreover, the important factor of physician online services has been neglected in patient decisions. Objective: In this paper, we addressed the endogeneity of online reviews and examined the impact of online reviews and services on outpatient visits based on theories of reviews and channel effects. Methods: We used a difference-in-difference approach to account for physician- and website-specific effects by collecting information from 474 physician homepages on two online health care communities. Results: We found that the number of reviews was more effective in influencing patient decisions compared with the overall review rating. An improvement in reviews leads to a relative increase in physician outpatient visits on that website. There are channel effects in health care: online services complement offline services (outpatient care appointments). Results further indicate that online services moderate the relationship between online reviews and physician outpatient visits. Conclusions: This study investigated the effect of reviews and channel effects in health care by conducting a difference-in-difference analysis on two online health care communities. Our findings provide basic research on online health care communities. UR - http://medinform.jmir.org/2019/4/e16185/ UR - http://dx.doi.org/10.2196/16185 UR - http://www.ncbi.nlm.nih.gov/pubmed/31789597 ID - info:doi/10.2196/16185 ER - TY - JOUR AU - Timimi, Farris AU - Ray, Sara AU - Jones, Erik AU - Aase, Lee AU - Hoffman, Kathleen PY - 2019/11/28 TI - Patient-Reported Outcomes in Online Communications on Statins, Memory, and Cognition: Qualitative Analysis Using Online Communities JO - J Med Internet Res SP - e14809 VL - 21 IS - 11 KW - social media KW - hydroxymethylglutaryl-CoA reductase inhibitors KW - drug-related side effects and adverse reactions KW - memory loss KW - PROMs KW - pharmacovigilance KW - infodemiology KW - infoveillance KW - peer-support groups N2 - Background: In drug development clinical trials, there is a need for balance between restricting variables by setting eligibility criteria and representing the broader patient population that may use a product once it is approved. Similarly, although recent policy initiatives focusing on the inclusion of historically underrepresented groups are being implemented, barriers still remain. These limitations of clinical trials may mask potential product benefits and side effects. To bridge these gaps, online communication in health communities may serve as an additional population signal for drug side effects. Objective: The aim of this study was to employ a nontraditional dataset to identify drug side-effect signals. The study was designed to apply both natural language processing (NLP) technology and hands-on linguistic analysis to a set of online posts from known statin users to (1) identify any underlying crossover between the use of statins and impairment of memory or cognition and (2) obtain patient lexicon in their descriptions of experiences with statin medications and memory changes. Methods: Researchers utilized user-generated content on Inspire, looking at over 11 million posts across Inspire. Posts were written by patients and caregivers belonging to a variety of communities on Inspire. After identifying these posts, researchers used NLP and hands-on linguistic analysis to draw and expand upon correlations among statin use, memory, and cognition. Results: NLP analysis of posts identified statistical correlations between statin users and the discussion of memory impairment, which were not observed in control groups. NLP found that, out of all members on Inspire, 3.1% had posted about memory or cognition. In a control group of those who had posted about TNF inhibitors, 6.2% had also posted about memory and cognition. In comparison, of all those who had posted about a statin medication, 22.6% (P<.001) also posted about memory and cognition. Furthermore, linguistic analysis of a sample of posts provided themes and context to these statistical findings. By looking at posts from statin users about memory, four key themes were found and described in detail in the data: memory loss, aphasia, cognitive impairment, and emotional change. Conclusions: Correlations from this study point to a need for further research on the impact of statins on memory and cognition. Furthermore, when using nontraditional datasets, such as online communities, NLP and linguistic methodologies broaden the population for identifying side-effect signals. For side effects such as those on memory and cognition, where self-reporting may be unreliable, these methods can provide another avenue to inform patients, providers, and the Food and Drug Administration. UR - http://www.jmir.org/2019/11/e14809/ UR - http://dx.doi.org/10.2196/14809 UR - http://www.ncbi.nlm.nih.gov/pubmed/31778117 ID - info:doi/10.2196/14809 ER - TY - JOUR AU - Lognos, Béatrice AU - Carbonnel, François AU - Boulze Launay, Isabelle AU - Bringay, Sandra AU - Guerdoux-Ninot, Estelle AU - Mollevi, Caroline AU - Senesse, Pierre AU - Ninot, Gregory PY - 2019/11/27 TI - Complementary and Alternative Medicine in Patients With Breast Cancer: Exploratory Study of Social Network Forum Data JO - JMIR Cancer SP - e12536 VL - 5 IS - 2 KW - complementary and alternative medicine (CAM) KW - nonpharmacological interventions KW - cancer KW - social network KW - forum KW - patient N2 - Background: Patients and health care professionals are becoming increasingly preoccupied in complementary and alternative medicine (CAM) that can also be called nonpharmacological interventions (NPIs). In just a few years, this supportive care has gone from solutions aimed at improving the quality of life to solutions intended to reduce symptoms, supplement oncological treatments, and prevent recurrences. Digital social networks are a major vector for disseminating these practices that are not always disclosed to doctors by patients. An exploration of the content of exchanges on social networks by patients suffering from breast cancer can help to better identify the extent and diversity of these practices. Objective: This study aimed to explore the interest of patients with breast cancer in CAM from posts published in health forums and French-language social media groups. Methods: The retrospective study was based on a French database of 2 forums and 4 Facebook groups between June 3, 2006, and November 17, 2015. The extracted, anonymized, and compiled data (264,249 posts) were analyzed according to the occurrences associated with the NPI categories and NPI subcategories, their synonyms, and their related terms. Results: The results showed that patients with breast cancer use mainly physical (37.6%) and nutritional (31.3%) interventions. Herbal medicine is a subcategory that was cited frequently. However, the patients did not mention digital interventions. Conclusions: This exploratory study of the main French forums and discussion groups indicates a significant interest in CAM during and after treatments for breast cancer, with primarily physical and nutritional interventions complementing approved treatments. This study highlights the importance of accurate information (vs fake medicine), prescription and monitoring of these interventions, and the mediating role that health professionals must play in this regard. UR - http://cancer.jmir.org/2019/2/e12536/ UR - http://dx.doi.org/10.2196/12536 UR - http://www.ncbi.nlm.nih.gov/pubmed/31774404 ID - info:doi/10.2196/12536 ER - TY - JOUR AU - deBronkart, Dave AU - Eysenbach, Gunther PY - 2019/11/22 TI - Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto JO - J Med Internet Res SP - e17045 VL - 21 IS - 11 KW - data KW - participatory medicine KW - ehealth UR - http://www.jmir.org/2019/11/e17045/ UR - http://dx.doi.org/10.2196/17045 UR - http://www.ncbi.nlm.nih.gov/pubmed/31755873 ID - info:doi/10.2196/17045 ER - TY - JOUR AU - Booth, Alison AU - Bell, Timothy AU - Halhol, Sonia AU - Pan, Shiyu AU - Welch, Verna AU - Merinopoulou, Evie AU - Lambrelli, Dimitra AU - Cox, Andrew PY - 2019/11/22 TI - Using Social Media to Uncover Treatment Experiences and Decisions in Patients With Acute Myeloid Leukemia or Myelodysplastic Syndrome Who Are Ineligible for Intensive Chemotherapy: Patient-Centric Qualitative Data Analysis JO - J Med Internet Res SP - e14285 VL - 21 IS - 11 KW - social media KW - health-related quality of life KW - patient-centric KW - leukemia KW - myeloid KW - acute KW - myelodysplastic syndromes KW - natural language processing KW - patient preference KW - qualitative research N2 - Background: Until recently, treatment options were limited for patients with acute myeloid leukemia and myelodysplastic syndrome (AML and MDS) who are ineligible for intensive chemotherapy. Owing to the condition?s rapid progression, it is difficult to identify what is most important to patients when making treatment decisions. Patients? needs can be better addressed by gaining a deeper understanding of their perspectives, which is valuable in the decision-making process. The Food and Drug Administration recently encouraged the use of social media as a tool to gain insight on patients? perspectives regarding symptoms experienced and the impacts of their disease. Objective: This study aimed to use disease-specific social media posts by patients with AML or MDS who are ineligible for intensive chemotherapy and their caregivers to capture factors they feel are most important, and to provide current evidence to inform and characterize these perspectives. Methods: Posts by patients with AML or MDS and their caregivers were extracted from publicly available discussions on 3 large AML- or MDS?specific sites. These posts were manually reviewed to only include patients who are ineligible for intensive chemotherapy. A total of 1443 posts from 220 AML patients/caregivers and 2733 posts from 127 MDS patients/caregivers met the study inclusion criteria. A qualitative data analysis (QDA) of a sample of 85 patients?/caregivers? posts was conducted to identify themes, and a targeted QDA of posts from 79 users focused on treatment decision discussions. Posts were manually reviewed, and relevant text segments were coded and grouped into categories and overall themes. Results: Eighty-six percent (73/85) of users in the overall QDA had relevant information about the key objectives. The most commonly discussed treatment experience theme was the humanistic burden of AML or MDS in terms of emotional/physical impact and impact on family (86%, 63/73 of users), followed by treatment decisions (56%, 41/73) and unmet needs (50%, 37/73). In the QDA of treatment decisions, 60 posts from 45 users contained relevant information. Patients commonly reported the desire to reach specific milestones, including birthdays and weddings. They wished for a better quality of life over quantity of life, did not want the risk of suffering from side effects, and expressed a clear preference to be at home rather than in a hospital or care home. Conclusions: This study was a novel application of disease-specific social media. It highlighted experiences in the current treatment of AML and MDS, including information gaps, patient/caregiver uncertainty, and the importance of understanding patients?/caregivers? goals and opinions. A clear finding from this research was the importance of reaching certain personal life goals and being at home with family and friends. The analysis showed that patients/caregivers face additional challenges, including humanistic impacts and a lack of information regarding treatment options. UR - http://www.jmir.org/2019/11/e14285/ UR - http://dx.doi.org/10.2196/14285 UR - http://www.ncbi.nlm.nih.gov/pubmed/31755871 ID - info:doi/10.2196/14285 ER - TY - JOUR AU - Atanasova, Sara AU - Petric, Gregor PY - 2019/11/20 TI - Collective Empowerment in Online Health Communities: Scale Development and Empirical Validation JO - J Med Internet Res SP - e14392 VL - 21 IS - 11 KW - patient empowerment KW - collective empowerment KW - online health community KW - psychometrics KW - reliability KW - validity KW - weights and measures N2 - Background: The role of online health communities (OHCs) in patient empowerment is growing and has been increasingly studied in recent years. Research has focused primarily on individualistic conception of patients? empowerment, with much less attention paid to the role of OHCs in the development of patients? collective empowerment. Although OHCs have immense potential for empowerment that goes beyond the individual, the concept and scale of collective empowerment in OHCs have not yet been developed or validated. Objective: This study aimed to develop an instrument for measuring collective empowerment in online health communities (CE-OHC) and to test its quality by investigating its factorial structure, reliability, construct validity, and predictive validity. Methods: The CE-OHC scale was developed according to a strict methodology for developing valid and reliable scales. An initial set of 20 items was first tested in the pilot study conducted in 2016 using a sample of 280 registered users of Slovenia?s largest OHC. A refined version with 11 items was tested in the main study conducted in 2018 on a random sample of 30,000 registered users of the same OHC. The final sample comprised 784 users. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were used to investigate the factorial structure, discriminant validity, and convergent validity of the scale. Cronbach alpha coefficient was used to determine the CE-OHC scale?s internal consistency. To establish the predictive validity, ordinary least squares regression was performed to test the role of CE-OHC in users? civic participation. Results: The EFA resulted in a two-factor solution, and the two factors?knowledge of resources and resource mobilization for collective action?together explain 63.8% of the variance. The second-order CFA demonstrated a good fit to the data (root mean square error of approximation=0.07) and the scale had a good internal consistency (alpha=.86). Although evidence of the scale?s convergent validity was partially provided, discriminant validity of the scale remained unconfirmed. Overall, CE-OHC was confirmed to be a predictor of users? civic participation, but the influence was somewhat weak and inconsistent across two subscales. Conclusions: The proposed CE-OHC scale is a reliable and relatively valid instrument and serves as a good baseline to advance the measurement of collective empowerment in OHC contexts. This is the first scale developed for this purpose, and future research should focus on the development of a clear nomological network of the collective empowerment construct in relation to the OHC settings. UR - http://www.jmir.org/2019/11/e14392/ UR - http://dx.doi.org/10.2196/14392 UR - http://www.ncbi.nlm.nih.gov/pubmed/31746772 ID - info:doi/10.2196/14392 ER - TY - JOUR AU - Audrain-Pontevia, Anne-Françoise AU - Menvielle, Loick AU - Ertz, Myriam PY - 2019/11/11 TI - Effects of Three Antecedents of Patient Compliance for Users of Peer-to-Peer Online Health Communities: Cross-Sectional Study JO - J Med Internet Res SP - e14006 VL - 21 IS - 11 KW - online social networking KW - patient empowerment KW - patient compliance KW - patient satisfaction KW - structural equation modeling N2 - Background: Over the past 50 years, patient noncompliance has appeared as a major public health concern and focus of a great deal of research because it endangers patient recovery and imposes a considerable financial burden on health care systems. Meanwhile, online health communities (OHCs) are becoming more common and are commonly used by individuals with health problems, and they may have a role in facilitating compliance. Despite this growing popularity, little is known about patient compliance predictors for OHCs? users. Objective: This study aimed to investigate the extent to which participating in OHCs may trigger higher levels of compliance. It identified 3 interrelated predictors that may affect patient compliance: patient empowerment gained through peer-to-peer OHCs, satisfaction with the physician, and commitment to the physician. Methods: A Web-based survey tested the conceptual model and assessed the effects of patient empowerment gained through OHCs on patient satisfaction and commitment to the physician, as well as the effects of these 3 predictors on patient compliance with the proposed treatment. Members of peer-to-peer OHCs were asked to answer an online questionnaire. A convenience sample of 420 patients experiencing chronic illness and using peer-to-peer OHCs was surveyed in August 2018 in Québec, Canada. A path analysis using structural equation modeling tested the proposed relationships between the predictors and their respective paths on patient compliance. The mediation effects of these predictor variables on patient compliance were estimated with the PROCESS macro in SPSS. Results: The findings indicated that patient empowerment gained through OHCs was positively related to patient commitment to the physician (beta=.69; P<.001) and patient compliance with the proposed treatment (beta=.35; P<.001). Patient commitment also positively influenced patient compliance (beta=.74; P<.001). Patient empowerment did not exert a significant influence on patient satisfaction with the physician (beta=.02; P=.76), and satisfaction did not affect compliance (beta=?.07; P=.05); however, patient satisfaction was positively related to patient commitment to the physician (beta=.14; P<.01). The impact of empowerment on compliance was partially mediated by commitment to the physician (beta=.32; 95% CI 0.22-0.44) but not by satisfaction. Conclusions: This study highlights the importance of peer-to-peer OHCs for two main reasons. The primary reason is that patient empowerment gained through peer-to-peer OHCs both directly and indirectly enhances patient compliance with the proposed treatment. The underlying mechanisms of these effects were shown. Second, commitment to the physician was found to play a more critical role than satisfaction with the physician in determining patient-physician relationship quality. Overall, our findings support the assumption that health care stakeholders should encourage the use of peer-to-peer OHCs to favor patient empowerment and patient commitment to the physician to increase patient compliance with the proposed treatment. UR - https://www.jmir.org/2019/11/e14006 UR - http://dx.doi.org/10.2196/14006 UR - http://www.ncbi.nlm.nih.gov/pubmed/31710295 ID - info:doi/10.2196/14006 ER - TY - JOUR AU - Horrell, N. Lindsey AU - Lazard, J. Allison AU - Bhowmick, Amrita AU - Hayes, Sara AU - Mees, Susan AU - Valle, G. Carmina PY - 2019/11/4 TI - Attracting Users to Online Health Communities: Analysis of LungCancer.net?s Facebook Advertisement Campaign Data JO - J Med Internet Res SP - e14421 VL - 21 IS - 11 KW - internet KW - health communication KW - social media KW - health promotion KW - health education N2 - Background: With growing numbers of adults turning to the internet to get answers for health-related questions, online communities provide platforms with participatory networks to deliver health information and social support. However, to optimize the benefits of these online communities, these platforms must market effectively to attract new members and promote community growth. Objective: The aim of this study was to assess the engagement results of Facebook advertisements designed to increase membership in the LungCancer.net online community. Methods: In the fall of 2017, a series of 5 weeklong Facebook advertisement campaigns were launched targeting adults over the age of 18 years with an interest in lung cancer to increase opt ins to the LungCancer.net community (ie, the number of people who provided their email to join the site). Results: The advertisements released during this campaign had a sum reach of 91,835 people, and 863 new members opted into the LungCancer.net community by providing their email address. Females aged 55 to 64 years were the largest population reached by the campaign (31,401/91,835; 34.29%), whereas females aged 65 and older were the largest population who opted into the LungCancer.net community (307/863; 35.57%). A total of US $1742 was invested in the Facebook campaigns, and 863 people opted into LungCancer.net, resulting in a cost of US $2.02 per new member. Conclusions: This research demonstrates the feasibility of using Facebook advertising to promote and grow online health communities. More research is needed to compare the effectiveness of various advertising approaches. Public health professionals should consider Facebook campaigns to effectively connect intended audiences to health information and support. UR - https://www.jmir.org/2019/11/e14421 UR - http://dx.doi.org/10.2196/14421 UR - http://www.ncbi.nlm.nih.gov/pubmed/31682589 ID - info:doi/10.2196/14421 ER - TY - JOUR AU - Zwerenz, Rüdiger AU - Baumgarten, Carlotta AU - Becker, Jan AU - Tibubos, Ana AU - Siepmann, Martin AU - Knickenberg, J. Rudolf AU - Beutel, E. Manfred PY - 2019/10/24 TI - Improving the Course of Depressive Symptoms After Inpatient Psychotherapy Using Adjunct Web-Based Self-Help: Follow-Up Results of a Randomized Controlled Trial JO - J Med Internet Res SP - e13655 VL - 21 IS - 10 KW - depression KW - mental health KW - internet KW - aftercare KW - psychotherapy KW - psychology, clinical KW - inpatients N2 - Background: We recently showed in a randomized controlled trial that Web-based self-help as an adjunct improved the effectiveness of multimodal inpatient psychotherapy for depression. Objective: The aims of this study were (1) to determine whether a Web-based self-help adjunctive to multimodal inpatient psychotherapeutic treatment could also improve the course of depressive symptoms and (2) to identify predictors of residual depressive symptoms at follow-up. Methods: Overall, 229 patients were randomized either to the Web-based self-help intervention group (Deprexis) or an active control group (Web-based information about depression and depressive symptoms) in addition to multimodal inpatient psychotherapy. Participants in both groups were able to access their respective Web-based programs for 12 weeks, which meant that they typically had access after discharge from the inpatient unit (mean hospitalization duration: 40 days, T1). Follow-up was performed 6 months after study intake (T3). Results: At follow-up, participants of the Web-based self-help group had considerably lower symptom load regarding depressive symptoms (d=0.58) and anxiety (d=0.46) as well as a better quality of life (d=0.43) and self-esteem (d=0.31) than participants of the control group. Nearly 3 times as many participants of the intervention group compared with the control group achieved remission in accordance with less deterioration. The number needed to treat based on the Beck Depression Inventory-II (BDI-II) improved over time (T1: 7.84, T2: 7.09, and T3: 5.12). Significant outcome predictors were BDI at discharge and treatment group. Conclusions: Web-based self-help as an add-on to multimodal inpatient psychotherapy improved the short-term course of depressive symptoms beyond termination. Residual symptoms at discharge from inpatient treatment and utilization of the Web-based self-help were the major predictors of depressive symptoms at follow-up. Challenges and barriers (eg, costs, therapists? concerns, or technical barriers) of adding Web-based interventions to inpatient treatment have to be addressed. Trial Registration: ClinicalTrials.gov NCT02196896; https://clinicaltrials.gov/ct2/show/NCT02196896. UR - https://www.jmir.org/2019/10/e13655 UR - http://dx.doi.org/10.2196/13655 UR - http://www.ncbi.nlm.nih.gov/pubmed/31651403 ID - info:doi/10.2196/13655 ER - TY - JOUR AU - Mikal, P. Jude AU - Grande, W. Stuart AU - Beckstrand, J. Michael PY - 2019/10/24 TI - Codifying Online Social Support for Breast Cancer Patients: Retrospective Qualitative Assessment JO - J Med Internet Res SP - e12880 VL - 21 IS - 10 KW - social support KW - social networking KW - social media KW - health communication KW - breast cancer N2 - Background: Social media has emerged as the epicenter for exchanging health-related information, resources, and emotional support. However, despite recognized benefits of social media for advancing health-promoting support exchange, researchers have struggled to differentiate between the different ways social support occurs and is expressed through social media. Objective: The objective of this study was to develop a fuller understanding of social support exchange by examining the ways in which breast cancer patients discuss their health needs and reach out for support on Facebook and to develop a coding schema that can be useful to other social media researchers. Methods: We conducted a retrospective qualitative assessment of text-based social support exchanges through Facebook among 30 breast cancer survivors. Facebook wall data were systematically scraped, organized, coded, and characterized by whether and which types of support were exchanged. Research questions focused on how often participants posted related to cancer, how often cancer patients reached out for support, and the relative frequency of informational, instrumental, or socioemotional support requests broadcast by patients on the site. Results: A novel ground-up coding schema applied to unwieldy Facebook data successfully identified social support exchange in two critical transitions in cancer treatment: diagnosis and transition off cancer therapy. Explanatory coding, design, and analysis processes led to a novel coding schema informed by 100,000 lines of data, an a priori literature review, and observed online social support exchanges. A final coding schema permits a compelling analysis of support exchange as a type of peer community, where members act proactively to buffer stress effects associated with negative health experiences. The coding schema framed operational definitions of what support meant and the forms each type of support could take in social media spaces. Conclusions: Given the importance of social media in social interaction, support exchange, and health promotion, our findings provide insight and clarity for researchers into the different forms informational, resource, and emotional support may take in Web-based social environments. Findings support broader continuity for evaluating computer-mediated support exchange. UR - http://www.jmir.org/2019/10/e12880/ UR - http://dx.doi.org/10.2196/12880 UR - http://www.ncbi.nlm.nih.gov/pubmed/31651404 ID - info:doi/10.2196/12880 ER - TY - JOUR AU - Ellway, Daniel AU - Reilly, Rachel AU - Le Couteur, Amanda AU - Ward, James PY - 2019/10/1 TI - Exploring How People Affected by Methamphetamine Exchange Social Support Through Online Interactions on Facebook: Content Analysis JO - JMIR Ment Health SP - e14011 VL - 6 IS - 10 KW - methamphetamine KW - social media KW - social support N2 - Background: Methamphetamine is an illicit and addictive psychostimulant that remains to be a significant cause of economic burden in Australia. Social media is increasingly being used by nongovernment organizations and health services to encourage the growth of social support networks among people with health-related issues. Several studies have investigated the utility of social media in providing social support to groups of people with health-related issues. However, limited research exists that explores how people who have been directly or indirectly affected by methamphetamine use social media for social support. Objective: This study aimed to determine the types of social support being sought and provided by people affected by methamphetamine when interacting with others on a Facebook page. Methods: A total of 14,777 posts were collected from a Facebook page and transferred into an Excel document for content analysis. The posts were manually coded into categories of social support using an adapted version of Cutrona and Suhr?s Social Support Behavior Code. Posts could be coded into more than one category. Saturation was reached at 2000 posts, which were used to draw inferences. Results: Emotional support was the most offered support type, with 42.05% (841/2000) of posts providing this form of support. This is followed by esteem support, which was provided in 40.40% (808/2000) of posts. Overall, 24.20% (484/2000) of posts offered informational support. Network support and tangible support were the least offered support types, with 2.25% (45/2000) and 1.70% (34/2000) of posts offering these types of support, respectively. Conclusions: This study suggests that online social support groups can be effective in challenging stigma by encouraging people affected by methamphetamine to connect with each other and talk about their struggles. This in turn represents an important step toward successful rehabilitation. UR - https://mental.jmir.org/2019/10/e14011 UR - http://dx.doi.org/10.2196/14011 UR - http://www.ncbi.nlm.nih.gov/pubmed/31573926 ID - info:doi/10.2196/14011 ER - TY - JOUR AU - Stetten, E. Nichole AU - LeBeau, Kelsea AU - Aguirre, A. Maria AU - Vogt, B. Alexis AU - Quintana, R. Jazmine AU - Jennings, R. Alexis AU - Hart, Mark PY - 2019/9/30 TI - Analyzing the Communication Interchange of Individuals With Disabilities Utilizing Facebook, Discussion Forums, and Chat Rooms: Qualitative Content Analysis of Online Disabilities Support Groups JO - JMIR Rehabil Assist Technol SP - e12667 VL - 6 IS - 2 KW - persons with disabilities KW - social media KW - social support KW - online social networking KW - internet KW - psychosocial support systems KW - qualitative research N2 - Background: Approximately 1 in 5 adults in the United States are currently living with a form of disability. Although the Americans with Disabilities Act has published guidelines to help make developing technology and social networking sites (SNS) more accessible and user-friendly to people with a range of disabilities, persons with disabilities, on average, have less access to the internet than the general population. The quality, content, and medium vary from site to site and have been greatly understudied. Due to this, it is still unclear how persons with disabilities utilize various platforms of online communication for support. Objective: The objective of this study was to qualitatively explore and compare the interactions and connections among online support groups across Facebook, discussion forums, and chat rooms to better understand how persons with disabilities were utilizing different SNS to facilitate communication interchange, disseminate information, and foster community support. Methods: Facebook groups, discussion forums, and chat rooms were chosen based on predetermined inclusion criteria. Data collected included content posted on Facebook groups, forums, and chat rooms as well as the interactions among group members. Data were analyzed qualitatively using the constant comparative method. Results: A total of 133 Facebook posts, 116 forum posts, and 60 hours of chat room discussions were collected and analyzed. In addition, 4 themes were identified for Facebook posts, 3 for discussion forums, and 3 for chat rooms. Persons with disabilities utilized discussion forums and chat rooms in similar ways, but their interactions on Facebook differed in comparison. They seem to interact on a platform based on the specific functions it offers. Conclusions: Interactions on each of the platforms displayed elements of the 4 types of social support, indicating the ability for social support to be facilitated among SNS; however, the type of social support varied by platform. Findings demonstrate that online support platforms serve specific purposes that may not be interchangeable. Through participation on different platforms, persons with disabilities are able to provide and receive social support in various ways, without the barriers and constraints often experienced by this population. UR - http://rehab.jmir.org/2019/2/e12667/ UR - http://dx.doi.org/10.2196/12667 UR - http://www.ncbi.nlm.nih.gov/pubmed/31573937 ID - info:doi/10.2196/12667 ER - TY - JOUR AU - Litchman, L. Michelle AU - Edelman, S. Linda PY - 2019/9/26 TI - Perceptions of the Diabetes Online Community?s Credibility, Social Capital, and Help and Harm: Cross-Sectional Comparison Between Baby Boomers and Younger Adults JO - JMIR Aging SP - e10857 VL - 2 IS - 2 KW - diabetes mellitus KW - online social networking KW - social capital KW - trust KW - social media KW - older adult N2 - Background: The use of online health communities such as the diabetes online community (DOC) is growing. Individuals who engage in the DOC are able to interact with peers who have the same medical condition. It is not known if older adults are perceiving the DOC differently compared with younger adults. Objective: The purpose of this study was to explore and understand how the DOC is perceived in terms of social capital, source credibility, and help and harm. The findings from this study will shed light on how users of different age groups (baby boomers and younger adult counterparts) perceive DOC use. Methods: This study represents a subset of participants from a larger study of DOC users. Baby boomers and younger adults with diabetes were recruited from the DOC to participate in a cross-sectional survey. Demographics, electronic health use (reasons to join the DOC, DOC intensity, DOC engagement, internet social capital, and help or harm from the DOC), source credibility, health-related quality of life, and diabetes self-care data were collected. We examined the differences between baby boomer and younger adult responses. Results: The participants included baby boomers (N=76) and younger adult counterparts (N=102). Participants scored their diabetes health care team (mean 33.5 [SD 8]) significantly higher than the DOC (mean 32 [SD 6.4]) with regard to competence (P<.05) and trustworthiness (diabetes health care team mean 36.3 [SD 7.1]; DOC mean 33.6 [SD 6.2]; P<.001). High bonding and bridging social capital correlated with high DOC intensity (r=.629; P<.001 and r=.676; P<.001, respectively) and high DOC engagement (r=.474; P<.01 and r=.507; P?.01, respectively). The greater majority (69.8%) reported the DOC as being helpful, and 1.8% reported that the DOC had caused minor harm. Baby boomers perceived DOC credibility, social capital, help, and harm similarly to their younger adult counterparts. Conclusions: Baby boomers are using and perceiving the DOC similarly to younger adults. DOC users find the DOC to be credible; however, they scored their health care team higher with regard to competence and trustworthiness. The DOC is beneficial with low risk and may augment current diabetes care. UR - https://aging.jmir.org/2019/2/e10857/ UR - http://dx.doi.org/10.2196/10857 UR - http://www.ncbi.nlm.nih.gov/pubmed/31573907 ID - info:doi/10.2196/10857 ER - TY - JOUR AU - Dave, Arpit AU - Yi, Johnny AU - Boothe, Andy AU - Brashear, Helene AU - Byrne, Jeffrey AU - Gad, Yash PY - 2019/9/26 TI - Listening to the HysterSisters: A Retrospective Keyword Frequency Analysis of Conversations About Hysterectomy Recovery JO - JMIR Perioper Med SP - e10728 VL - 2 IS - 2 KW - hysterectomy KW - gynecology KW - social media KW - perceived recovery N2 - Background: In the postoperative period, individual patient experiences vary widely and are based on a diverse set of input variables influenced by all stakeholders in and throughout the surgical process. Although clinical research has primarily focused on clinical and administrative datasets to characterize the postoperative recovery experience, there is increasing interest in patient-reported outcome measures (PROMs). The growth of online communities in which patients themselves participate provides a venue to study PROMs directly. One such forum-based community is HysterSisters, dedicated to helping individuals through the experience of hysterectomy, a major surgery which removes the uterus. The surgery can be performed by a variety of methods such as minimally invasive approaches or the traditional abdominal approach using a larger incision. The community offers support for ?medical and emotional issues [...] from diagnosis, to treatment, to recovery.? Users can specify when and what type of hysterectomy they underwent. They can discuss their shared experience of hysterectomy and provide, among other interactions, feedback, reassurance, sympathy, or advice, thus providing a unique view into conversations surrounding the hysterectomy experience. Objective: We aimed to characterize conversations about hysterectomy recovery as experienced by users of the HysterSisters online community. Methods: A retrospective keyword frequency analysis of the HysterSisters Hysterectomy Recovery forum was performed. Results: Within the Hysterectomy Recovery forum, 33,311 unique users declared their hysterectomy date and type and posted during the first 12 weeks postsurgery. A taxonomy of 8 primary symptom groups was created using a seed list of keywords generated from a term frequency analysis of these threads. Pain and bleeding were the two most mentioned symptom groups and account for almost half of all symptom mentions (19,965/40,127). For symptoms categories such as pain and hormones and emotions, there was no difference in the proportion of users mentioning related keywords, regardless of the type of hysterectomy, whereas bleeding-related or intimacy-related keywords were mentioned more frequently by users undergoing certain minimally invasive approaches when compared with those undergoing abdominal hysterectomy. Temporal patterns in symptom mentions were noted as well. The majority of all posting activity occurred in the first 3 weeks. Across all keyword groups, individuals reporting minimally invasive procedures ceased forum use of these keywords significantly earlier than those reporting abdominal hysterectomy. Peaks in conversation volume surrounding particular symptom categories were also identified at 1, 3, and 6 weeks postoperatively. Conclusions: The HysterSisters Hysterectomy Recovery forum and other such forums centered on users? health care experience can provide novel actionable insights that can improve patient-centered care during the postoperative period. This study adds another dimension to the utility of social media analytics by demonstrating that measurement of post volumes and distribution of symptom mentions over time reveal key opportunities for beneficial symptom-specific patient engagement. UR - http://periop.jmir.org/2019/2/e10728/ UR - http://dx.doi.org/10.2196/10728 UR - http://www.ncbi.nlm.nih.gov/pubmed/33393919 ID - info:doi/10.2196/10728 ER - TY - JOUR AU - Wu, Tailai AU - Deng, Zhaohua AU - Chen, Zhuo AU - Zhang, Donglan AU - Wu, Xiang AU - Wang, Ruoxi PY - 2019/09/03 TI - Predictors of Patients? Loyalty Toward Doctors on Web-Based Health Communities: Cross-Sectional Study JO - J Med Internet Res SP - e14484 VL - 21 IS - 9 KW - medical informatics KW - telemedicine KW - patients KW - physicians KW - community network KW - psychological theory KW - social theory KW - health services N2 - Background: Web-based health communities provide means for patients to not only seek care but also to promote their relationship with doctors. However, little is known about the predictors of patients? loyalty toward doctors in Web-based health communities. Objective: This study aimed to investigate the predictors of patients? loyalty toward doctors in Web-based health communities. Methods: On the basis of sociotechnical systems theory and attachment theory, we propose that social factors including emotional interaction, perceived expertise, and social norm influence patients? loyalty through their emotional attachment, whereas technical factors including sociability, personalization, and perceived security affect patients? loyalty through functional dependence. To validate our proposed research model, we used the survey method and collected 373 valid answers. Partial least square was used to analyze the data. Results: Our empirical analysis results showed that all the social factors including emotional interaction (beta=.257, t350=2.571; P=.01), perceived expertise (beta=.288, t350=3.412; P=.001), and social norm (beta=.210, t350=2.017; P=.04) affect patients? emotional attachment toward doctors significantly, whereas except sociability (beta=.110, t350=1.152; P=.25), technical factors such as personalization (beta=.242, t350=2.228; P=.03) and perceived security (beta=.328, t350=3.438; P=.001) impact functional dependence significantly. Considering the effect of working mechanisms, both emotional attachment (beta=.443, t350=4.518; P<.001) and functional dependence (beta=.303, t350=2.672; P=.008) influence patients? loyalty toward doctors in Web-based health communities significantly. Conclusions: Patients? loyalty toward doctors in Web-based health communities is important for the effectiveness of doctors? advice or service in Web-based health communities. The research results not only fill the gaps in the literature of the patient-doctor relationship and Web-based health communities but also has many implications for establishing patients? loyalty on Web-based health communities and in physical context. UR - https://www.jmir.org/2019/9/e14484/ UR - http://dx.doi.org/10.2196/14484 UR - http://www.ncbi.nlm.nih.gov/pubmed/31482855 ID - info:doi/10.2196/14484 ER - TY - JOUR AU - Costello, E. Ruth AU - Anand, Amrutha AU - Jameson Evans, Matt AU - Dixon, G. William PY - 2019/08/29 TI - Associations Between Engagement With an Online Health Community and Changes in Patient Activation and Health Care Utilization: Longitudinal Web-Based Survey JO - J Med Internet Res SP - e13477 VL - 21 IS - 8 KW - self-management KW - chronic disease KW - health information exchanges KW - digital health KW - peer support KW - peer-to-peer support KW - online support groups KW - internet N2 - Background: Participation in online health communities (OHCs) is a popular trend in the United Kingdom. However, so far, no evidence exists to indicate an association between participation in OHCs and improved health outcomes. Objective: This study aimed to (1) determine changes in patient activation over 3 months in new users of an OHC, (2) describe patterns of engagement with an OHC, (3) examine whether patients? characteristics at baseline were associated with subsequent patterns of engagement, and (4) determine if patterns of engagement during the 3 months were associated with changes in patient activation, health care utilization, and health status. Methods: Active new OHC users on HealthUnlocked (HU) were surveyed to measure demographics, levels of patient activation (describing a person?s confidence in managing their own health; scale 0-100 with 4 categories), health care utilization, and health status using a Web-based survey at baseline and 3 months. Patient activation at baseline and 3 months was compared (aim 1). Alongside, for a sample of HU users and survey responders, daily OHC website usage data were automatically captured. This was used to identify clusters of engagement with HU (aim 2). For survey responders, baseline characteristics, patient activation, health care utilization, and health status were compared at baseline and 3 months, overall, and between engagement clusters using t tests and chi-square tests (aims 3 and 4). Results: In 329 people who completed both surveys, baseline activation was most frequently level 3, described as taking action but still lacking confidence. At follow-up, a change of 2.6 points was seen, with the greatest change seen in those at lowest baseline activation levels. In addition, 4 clusters of engagement were identified: low, medium, high, and very high, who were active on HU for a mean of 4, 12, 29, and 59 days, respectively. Survey responders were more commonly high or very high engagers. Baseline activation was highest in low and very high engagers. Overall activation increased over time in all engagement groups. Very high engagers had the greatest improvement in activation (5 points), although the average change was not above what is considered clinically meaningful for any group. Fewer accident and emergency visits were seen at follow-up in those with higher engagement, although this trend was not seen for other health care utilization measures. There was no change in health status at 3 months. Conclusions: This observational study provides some insight into how patterns of engagement with OHCs are associated with changes in patient activation, health care utilization, and health status. Over 3 months, overall, the change in activation was not clinically significant, and there were some indications that OHCs may be of benefit to particular groups. However, the study limitations prevent firm conclusions about causal relationships. UR - http://www.jmir.org/2019/8/e13477/ UR - http://dx.doi.org/10.2196/13477 UR - http://www.ncbi.nlm.nih.gov/pubmed/31469082 ID - info:doi/10.2196/13477 ER - TY - JOUR AU - Shorey, Shefaly AU - Ng, Debby Esperanza PY - 2019/08/29 TI - Evaluation of a Technology-Based Peer-Support Intervention Program for Preventing Postnatal Depression (Part 2): Qualitative Study JO - J Med Internet Res SP - e12915 VL - 21 IS - 8 KW - depression KW - mothers KW - postpartum KW - qualitative KW - social support KW - telecommunication KW - digital health KW - peer support KW - peer-to-peer support KW - online support groups KW - internet N2 - Background: Social support is known to reduce risks of postnatal depression (PND) and improve maternal emotional well-being. However, the Asian cultural context is often neglected when appraising maternal needs and mothers? preferences for social support. While many preventive efforts have experimented with technology, professionals, and paraprofessionals in providing social support to mothers in need, most studies determined the effectiveness of their interventions through quantitative measurements of maternal outcomes. Experiences and feedback from both participants and administrators are rarely discussed, especially in an Asian setting. Objective: The goal of the research was to evaluate the postnatal experiences of Asian mothers at risk of PND and the perceptions of peer volunteers regarding a technology-based peer-support intervention program (PIP). Methods: A qualitative semistructured interview was conducted with 20 Asian mothers at risk of depression (10 from the control group and 10 from the intervention group) and 19 peer volunteers from a randomized controlled trial. The PIP included weekly correspondence between peer volunteers and mothers through any telecommunication means over 4 weeks. All interviews were approximately 30 to 60 minutes long, audiotaped, transcribed verbatim, and analyzed using thematic analysis. Study findings were reported according to the Consolidated Standards of Reporting Trials checklist. Results: Two overarching themes comprising five subthemes were generated: postnatal experience (a bouncy ride, a way forward) and evaluation of the PIP (valuable, flexible, and supportive program; building blocks of a good relationship; and lessons learned and the road ahead). Mothers from both the control and interventions groups were generally satisfied with hospital care and the support received from family. They also shared similar breastfeeding challenges and needs for more informed decisions and follow-up support from the hospital. However, mothers who received the PIP tended to have more positive outlooks of their birth experiences. Overall, peer volunteers and mothers involved in the PIP found the PIP useful and expressed satisfaction with the program?s flexibility. They also shared their personal takeaways, the qualities of their friendships, and the need for extended correspondence time and recommended outreach to non?at-risk mothers. Conclusions: The positive endorsement of the PIP by peer volunteers and mothers suggests the success of the PIP in maintaining positive maternal emotional well-being during the postpartum period. With the help of technology, hospitals can easily provide additional peer support to at-risk mothers in addition to existing standard care offered to these mothers. Trial Registration: ISRCTN Registry ISRCTN14864807; http://www.isrctn.com/ISRCTN14864807 International Registered Report Identifier (IRRID): RR2-10.2196/resprot.9416 UR - http://www.jmir.org/2019/8/e12915/ UR - http://dx.doi.org/10.2196/12915 UR - http://www.ncbi.nlm.nih.gov/pubmed/31469080 ID - info:doi/10.2196/12915 ER - TY - JOUR AU - Shorey, Shefaly AU - Chee, Ing Cornelia Yin AU - Ng, Debby Esperanza AU - Lau, Ying AU - Dennis, Cindy-Lee AU - Chan, Huak Yiong PY - 2019/08/29 TI - Evaluation of a Technology-Based Peer-Support Intervention Program for Preventing Postnatal Depression (Part 1): Randomized Controlled Trial JO - J Med Internet Res SP - e12410 VL - 21 IS - 8 KW - anxiety KW - loneliness KW - postpartum depression KW - social support KW - technology KW - digital health KW - peer support KW - peer-to-peer support KW - online support groups KW - internet N2 - Background: The frenzy of postbirth events often takes a toll on mothers? mental well-being, leaving them susceptible to postpartum psychological disorders such as postnatal depression (PND). Social support has been found to be effective in restoring the emotional well-being of new mothers. Therefore, mothers need to be supported during the crucial postpartum period to buffer the negative after effects of childbirth and to promote healthier maternal well-being. Objective: This study aimed to evaluate the effectiveness of a technology-based peer-support intervention program (PIP) on maternal outcomes during the early postpartum period. Methods: A randomized, parallel-armed controlled trial was conducted. The study recruited 138 mothers (69 in intervention group, 69 in control group) at risk of PND from a tertiary hospital in Singapore. To support these mothers, 20 peer volunteers were recruited by word of mouth and trained by a psychiatrist in social support skills before the intervention commenced. The 4-week?long intervention included a weekly follow-up with a peer volunteer through phone calls or text messages. The intervention group received peer support in addition to the standard care offered by the hospital. The control group only received postnatal standard care. Maternal outcomes (PND, postnatal anxiety [PNA], loneliness, and perceived social support) were measured with reliable and valid instruments. Data were collected immediately postpartum, at 1 month postpartum and at 3 months postpartum. The general linear model was used to compare the groups for postpartum percentage changes in the outcome variables at first and third months, and the linear mixed model was used to compare the trend over the study period. Results: There was a statistically significant difference in Edinburgh Postnatal Depression Scale scores (d=?2.11; 95% CI ?4.0 to ?0.3; P=.03) between the intervention and control groups at 3 months postpartum after adjusting for covariates. The intervention group had a significant change over time compared with the control group. Conclusions: The technology-based PIP was found to be effective in reducing the risk of PND among new mothers and showed a generally positive trend in reducing PNA and loneliness and increasing perceived social support. This study highlights the importance of training paraprofessionals to provide needed support for new mothers postpartum. A further long-term evaluation of the PIP on maternal and family outcomes and its cost-effectiveness is needed to inform clinical practices. Trial Registration: ISRCTN Registry ISRCTN14864807; https://www.isrctn.com/ISRCTN14864807 International Registered Report Identifier (IRRID): RR2-10.2196/resprot.9416 UR - http://www.jmir.org/2019/8/e12410/ UR - http://dx.doi.org/10.2196/12410 UR - http://www.ncbi.nlm.nih.gov/pubmed/31469084 ID - info:doi/10.2196/12410 ER - TY - JOUR AU - Nathan, P. Edward AU - Winkler, L. Sandra PY - 2019/08/29 TI - Amputees? Attitudes Toward Participation in Amputee Support Groups and the Role of Virtual Technology in Supporting Amputees: Survey Study JO - JMIR Rehabil Assist Technol SP - 14887 VL - 6 IS - 2 KW - amputation KW - amputee KW - survey KW - support KW - support group KW - technology KW - virtual KW - virtual reality N2 - Background: Acquiring information about and living with an amputation (or limb differential) is a lifelong endeavor. Although medical institutions address the immediate medical needs of amputees, information regarding how to live life as an amputee is provided from numerous sources, one of which is amputee support groups. Objective: This study aimed at understanding why amputees join support groups, leave support groups, and possibly return to support groups as well as how technology, specifically virtual reality, might play a role in supporting patients? needs. The results are intended to provide data for support groups, to increase their impact on amputee participants. Methods: A 38-item online survey was developed based on the findings of a previous randomized trial. The survey was administered between April and September 2018 and divided into four sections: Demographics, Limb Loss History, Amputee Support Group Participation, and Technology Usage. Items used multiple-choice, drop-down menu, check-box formats with explanation boxes for open-ended responses. Descriptive analyses were performed for both qualitative (open-ended questions) and quantitative data. Results: Of the 59 amputees enrolled, 54 completed the survey. All the respondents were aged 20-39 years, and nearly half of the older respondents thought audio and video teleconferencing or avatar-based technology would increase participation in support groups. The results suggest that an early goal for amputees who join support groups is to focus on regaining mobility and functionality in order to return to their normal life. Once achieved, the goal transitions to one of social connection with other amputees, although there is a caveat: Simply being an amputee may not provide sufficient connections for developing long-term social relationships. The strongest reason for joining a support group was to learn about living with an amputation, followed by networking and learning new skills. Conclusions: The results suggest four key takeaways regarding amputee participation in support groups: (1) the needs of participants in amputee support groups change over time; (2) meeting content needs to be relevant to agendas primarily driven by participants; (3) support group participation is also driven by the desire to increase functionality by developing skills, become familiar with prosthetic technology, have more than amputation in common with other participants, and participate at the designated meeting time and location; and (4) the use of technology should support patients? needs. UR - http://rehab.jmir.org/2019/2/e14887/ UR - http://dx.doi.org/10.2196/14887 UR - http://www.ncbi.nlm.nih.gov/pubmed/31469085 ID - info:doi/10.2196/14887 ER - TY - JOUR AU - Curtis, Brenda AU - Bergman, Brandon AU - Brown, Austin AU - McDaniel, Jessica AU - Harper, Kristen AU - Eisenhart, Emily AU - Hufnagel, Mariel AU - Heller, Thompson Anne AU - Ashford, Robert PY - 2019/08/26 TI - Characterizing Participation and Perceived Engagement Benefits in an Integrated Digital Behavioral Health Recovery Community for Women: A Cross-Sectional Survey JO - JMIR Ment Health SP - e13352 VL - 6 IS - 8 KW - substance use disorder KW - mHealth KW - mental health KW - substance addiction KW - rehabilitation N2 - Background: Research suggests that digital recovery support services (D-RSSs) may help support individual recovery and augment the availability of in-person supports. Previous studies highlight the use of D-RSSs in supporting individuals in recovery from substance use but have yet to examine the use of D-RSSs in supporting a combination of behavioral health disorders, including substance use, mental health, and trauma. Similarly, few studies on D-RSSs have evaluated gender-specific supports or integrated communities, which may be helpful to women and individuals recovering from behavioral health disorders. Objective: The goal of this study was to evaluate the SHE RECOVERS (SR) recovery community, with the following 3 aims: (1) to characterize the women who engage in SR (including demographics and recovery-related characteristics), (2) describe the ways and frequency in which participants engage with SR, and (3) examine the perception of benefit derived from engagement with SR. Methods: This study used a cross-sectional survey to examine the characteristics of SR participants. Analysis of variance and chi-square tests, as well as univariate logistic regressions, were used to explore each aim. Results: Participants (N=729, mean age 46.83 years; 685/729, 94% Caucasian) reported being in recovery from a variety of conditions, although the most frequent nonexclusive disorder was substance use (86.40%, n=630). Participants had an average length in recovery (LIR) of 6.14 years (SD 7.87), with most having between 1 and 5 years (n=300). The most frequently reported recovery pathway was abstinence-based 12-step mutual aid (38.40%). Participants reported positive perceptions of benefit from SR participation, which did not vary by LIR or recovery pathway. Participants also had high rates of agreement, with SR having a positive impact on their lives, although this too did vary by recovery length and recovery pathway. Participants with 1 to 5 years of recovery used SR to connect with other women in recovery at higher rates, whereas those with less than 1 year used SR to ask for resources at higher rates, and those with 5 or more years used SR to provide support at higher rates. Lifetime engagement with specific supports of SR was also associated with LIR and recovery pathway. Conclusions: Gender-specific and integrated D-RSSs are feasible and beneficial from the perspective of participants. D-RSSs also appear to provide support to a range of recovery typologies and pathways in an effective manner and may be a vital tool for expanding recovery supports for those lacking in access and availability because of geography, social determinants, or other barriers. UR - http://mental.jmir.org/2019/8/e13352/ UR - http://dx.doi.org/10.2196/13352 UR - http://www.ncbi.nlm.nih.gov/pubmed/31452520 ID - info:doi/10.2196/13352 ER - TY - JOUR AU - König, Lars AU - Jucks, Regina PY - 2019/8/12 TI - Influence of Enthusiastic Language on the Credibility of Health Information andthe Trustworthiness of Science Communicators: Insights From a Between-Subject Web-Based Experiment JO - Interact J Med Res SP - e13619 VL - 8 IS - 3 KW - health communication KW - information seeking behavior KW - trust KW - language KW - occupations KW - deep learning KW - FMRI KW - source credibility KW - persuasiveness N2 - Background: To decide whether online health information is reliable, information seekers apply 2 stretegies: first, information seekers can make credibility judgments by using their prior knowledge to evaluate the validity of the encountered health claim. Second, instead of evaluating the health claim itself, information seekers can make trustworthiness judgments by evaluating the character of the information source. In recent years, information givers from various professions have begun to use enthusiastic language to disseminate their information and persuade their audiences. Objective: To systematically explore this phenomenon, the goal of this study was to answer the following research questions: (1) does an enthusiastic language style, in comparison with a neutral language style, increase the trustworthiness of a person arguing in an online health forum and the credibility of his or her information? (2) does working for a university, in comparison with working for a lobbying organization, increase the trustworthiness of a person arguing in an online health forum and the credibility of his or her information? (3) does working for a university in combination with using an enthusiastic language style result in especially high trustworthiness and credibility ratings? Methods: In a 2x2 between-subject online experiment, 270 participants read a post from an online health forum and subsequently rated the trustworthiness of the forum post author and the credibility of his information. A total of 2 aspects of the forum post varied, namely the professional affiliation of the forum post author (whether the person introduced himself as a scientist or a lobbyist) and his language style (whether he used a neutral language style or an enthusiastic language style). Results: When the forum post author used an enthusiastic language style, he was perceived as more manipulative (P<.001), less knowledgeable (P<.001), and his information was perceived as less credible (P<.001). Overall, scientists were perceived as less manipulative (P=.04) than lobbyists. Furthermore, language style and professional affiliation interacted: When the forum post author was a lobbyist, language style did not affect integrity (P=.96) and benevolence (P=.79) ratings. However, when the forum post author was a scientist, enthusiastic language led to lower integrity (P=.002) and benevolence (P<.001) ratings than neutral language. Conclusions: The current findings illustrate that health information seekers do not just react to online health information itself. In addition, they are also sensitive to the ways in which health information is presented (?Which langue style is used to communicate health information??) and who presents it (?Who does the health information source work for??). UR - http://www.i-jmr.org/2019/3/e13619/ UR - http://dx.doi.org/10.2196/13619 UR - http://www.ncbi.nlm.nih.gov/pubmed/31411138 ID - info:doi/10.2196/13619 ER - TY - JOUR AU - Swendeman, Dallas AU - Arnold, Mayfield Elizabeth AU - Harris, Danielle AU - Fournier, Jasmine AU - Comulada, Scott W. AU - Reback, Cathy AU - Koussa, Maryann AU - Ocasio, Manuel AU - Lee, Sung-Jae AU - Kozina, Leslie AU - Fernández, Isabel Maria AU - Rotheram, Jane Mary AU - PY - 2019/08/09 TI - Text-Messaging, Online Peer Support Group, and Coaching Strategies to Optimize the HIV Prevention Continuum for Youth: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e11165 VL - 8 IS - 8 KW - adolescents KW - HIV/AIDS KW - mHealth KW - homelessness KW - MSM KW - transgender KW - prevention N2 - Background: America?s increasing HIV epidemic among youth suggests the need to identify novel strategies to leverage services and settings where youth at high risk (YAHR) for HIV can be engaged in prevention. Scalable, efficacious, and cost-effective strategies are needed, which support youth during developmental transitions when risks arise. Evidence-based behavioral interventions (EBIs) have typically relied on time-limited, scripted, and manualized protocols that were often delivered with low fidelity and lacked evidence for effectiveness. Objective: This study aims to examine efficacy, implementation, and cost-effectiveness of easily mountable and adaptable, technology-based behavioral interventions in the context of an enhanced standard of care and study assessments that implement the guidelines of Centers for Disease Control and Prevention (CDC) for routine, repeat HIV, and sexually transmitted infection (STI) testing for high-risk youth. Methods: Youth aged between 12 and 24 years (n=1500) are being recruited from community-based organizations and clinics serving gay, bisexual, and transgender youth, homeless youth, and postincarcerated youth, with eligibility algorithms weighting African American and Latino youth to reflect disparities in HIV incidence. At baseline and 4-month intervals over 24 months (12 months for lower-risk youth), interviewers monitor uptake of HIV prevention continuum steps (linkage to health care, use of pre- or postexposure prophylaxis, condoms, and prevention services) and secondary outcomes of substance use, mental health, and housing security. Assessments include rapid diagnostic tests for HIV, STIs, drugs, and alcohol. The study is powered to detect modest intervention effects among gay or bisexual male and transgender youth with 70% retention. Youth are randomized to 4 conditions: (1) enhanced standard of care of automated text-messaging and monitoring (AMM) and repeat HIV/STI testing assessment procedures (n=690); (2) online group peer support via private social media plus AMM (n=270); (3) coaching that is strengths-based, youth-centered, unscripted, based on common practice elements of EBI, available over 24 months, and delivered by near-peer paraprofessionals via text, phone, and in-person, plus AMM (n=270); and (4) online group peer support plus coaching and AMM (n=270). Results: The project was funded in September 2016 and enrollment began in May 2017. Enrollment will be completed between June and August 2019. Data analysis is currently underway, and the first results are expected to be submitted for publication in 2019. Conclusions: This hybrid implementation-effectiveness study examines alternative models for implementing the CDC guidelines for routine HIV/STI testing for YAHR of acquiring HIV and for delivering evidence-based behavioral intervention content in modular elements instead of scripted manuals and available over 24 months of follow-up, while also monitoring implementation, costs, and effectiveness. The greatest impacts are expected for coaching, whereas online group peer support is expected to have lower impact but may be more cost-effective. Trial Registration: ClinicalTrials.gov NCT03134833; https://clinicaltrials.gov/ct2/show/NCT03134833 (Archived by WebCite at http://www.webcitation.org/76el0Viw9) International Registered Report Identifier (IRRID): DERR1-10.2196/11165 UR - https://www.researchprotocols.org/2019/8/e11165/ UR - http://dx.doi.org/10.2196/11165 UR - http://www.ncbi.nlm.nih.gov/pubmed/31400109 ID - info:doi/10.2196/11165 ER - TY - JOUR AU - Strøm, Janni AU - Høybye, Terp Mette AU - Laursen, Malene AU - Jørgensen, Bastrup Lene AU - Nielsen, Vinther Claus PY - 2019/07/04 TI - Lumbar Spine Fusion Patients? Use of an Internet Support Group: Mixed Methods Study JO - J Med Internet Res SP - e9805 VL - 21 IS - 7 KW - spinal fusion KW - medical informatics KW - self-help groups KW - eHealth KW - online social networking KW - social support N2 - Background: Internet use within health care contexts offers the possibility to provide both health information and peer support. Internet Support Groups (ISGs) for patients may offer advantages, which are not found in face-to-face support. In patients undergoing lumbar spine fusion (LSF), ISGs could have a particular potential, as peer support on the web might bridge the decreased satisfaction with social life and social isolation found within these patients. ISGs might in this way contribute to increasing the functioning and overall health-related quality of life. However, LSF patients may generally belong to a group of citizens not prone to internet and online peer support. However, our knowledge of how LSF patients use ISGs is limited. Objective: The aim of this study was to describe the characteristics of users of an ISG and thematically explore the content of ISG interactions in Danish patients undergoing instrumented LSF because of degenerative spine disorders. Methods: Participants were recruited from a randomized controlled trial and included in a prospective cohort with a mixed methods design. Sociodemographic characteristics and information on psychological well-being (symptoms of anxiety and depression) were obtained at baseline and 1 to 5 weeks before surgery. Usage of the ISG was registered from baseline until 3 months after surgery. All posts and comments were collected, and content analysis was performed. Results: A total of 48 participants comprised the study population, with a mean age of 53 years (range 29-77). Of the participants, 54% (26/48) were female, 85% (41/48) were cohabitating, 69% (33/48) were unemployed, and the majority (69% [33/48]) had secondary education. Approximately one-third of the participants had symptoms of depression (35%, 17/48) and anxiety (29%, 14/48). Overall, 90% (43/48) of the participants accessed the ISG. No correlations were found between sociodemographic characteristics and access to the ISG. Women were more prone to be active users, contributing with posts (P=.04). Finally, active users contributing with posts or comments had viewed more pages, whereas passive users, users without posts or comments, had more interactions with the ISG (P<.001). The ISG contained 180 conversation threads, generating 354 comments. The 180 conversation threads in the ISG were constituted by 671 independent dialogue sequences. On the basis of those 671 dialogue sequences, 7 thematic categories emerged. Conclusions: Sociodemographic characteristics were not predictors of ISG use in this study, and active use was found to be gender dependent. Content of interactions on the ISG emerged within 7 thematic categories and focused on social recognition, experience of pain or use of pain medication, experience of physical activity or physical rehabilitation, expression of psychosocial well-being, advising on and exploring the ISG, and employment, which seemed to correspond well with the prevalent occurrence of symptoms of anxiety and depression. UR - https://www.jmir.org/2019/7/e9805/ UR - http://dx.doi.org/10.2196/jmir.9805 UR - http://www.ncbi.nlm.nih.gov/pubmed/31274113 ID - info:doi/10.2196/jmir.9805 ER - TY - JOUR AU - Foufi, Vasiliki AU - Timakum, Tatsawan AU - Gaudet-Blavignac, Christophe AU - Lovis, Christian AU - Song, Min PY - 2019/6/13 TI - Mining of Textual Health Information from Reddit: Analysis of Chronic Diseases With Extracted Entities and Their Relations JO - J Med Internet Res SP - e12876 VL - 21 IS - 6 KW - social media KW - chronic disease KW - data mining N2 - Background: Social media platforms constitute a rich data source for natural language processing tasks such as named entity recognition, relation extraction, and sentiment analysis. In particular, social media platforms about health provide a different insight into patient?s experiences with diseases and treatment than those found in the scientific literature. Objective: This paper aimed to report a study of entities related to chronic diseases and their relation in user-generated text posts. The major focus of our research is the study of biomedical entities found in health social media platforms and their relations and the way people suffering from chronic diseases express themselves. Methods: We collected a corpus of 17,624 text posts from disease-specific subreddits of the social news and discussion website Reddit. For entity and relation extraction from this corpus, we employed the PKDE4J tool developed by Song et al (2015). PKDE4J is a text mining system that integrates dictionary-based entity extraction and rule-based relation extraction in a highly flexible and extensible framework. Results: Using PKDE4J, we extracted 2 types of entities and relations: biomedical entities and relations and subject-predicate-object entity relations. In total, 82,138 entities and 30,341 relation pairs were extracted from the Reddit dataset. The most highly mentioned entities were those related to oncological disease (2884 occurrences of cancer) and asthma (2180 occurrences). The relation pair anatomy-disease was the most frequent (5550 occurrences), the highest frequent entities in this pair being cancer and lymph. The manual validation of the extracted entities showed a very good performance of the system at the entity extraction task (3682/5151, 71.48% extracted entities were correctly labeled). Conclusions: This study showed that people are eager to share their personal experience with chronic diseases on social media platforms despite possible privacy and security issues. The results reported in this paper are promising and demonstrate the need for more in-depth studies on the way patients with chronic diseases express themselves on social media platforms. UR - http://www.jmir.org/2019/6/e12876/ UR - http://dx.doi.org/10.2196/12876 UR - http://www.ncbi.nlm.nih.gov/pubmed/31199327 ID - info:doi/10.2196/12876 ER - TY - JOUR AU - Wu, Tailai AU - Deng, Zhaohua AU - Chen, Zhuo AU - Zhang, Donglan AU - Wang, Ruoxi AU - Wu, Xiang PY - 2019/6/7 TI - Predictors of Patients? Intention to Interact With Doctors in Web-Based Health Communities in China: Cross-Sectional Study JO - J Med Internet Res SP - e13693 VL - 21 IS - 6 KW - medical informatics KW - telemedicine KW - patients KW - physicians KW - community network KW - psychological theory KW - social theory N2 - Background: Web-based health communities provide opportunities for doctors and patients to interact with each other and change the traditional communication mode between doctors and patients. However, little is known about the predictors of patients? intention to interact with doctors in Web-based health communities in China. Objective: The purpose of this study was to investigate what are the predictors of patients? intention to interact with doctors in Web-based health communities in China. Methods: On the basis of two-factor theory and service convenience theory, we propose that the attributes of Web-based health communities including ease of use and perceived synchronicity influence patients? intention to interact through convenience of Web-based health communities, whereas the attributes of physical health facilities such as inaccessibility and discontinuity affect patients? intention to interact through inconvenience of physical health facilities. We employed the survey method to validate our hypothesized relationships. Through developing the measurement instruments, we collected 334 valid answers from Web health community users and utilized partial least square to analyze the data. Results: Ease of use (t311=2.924, P=.004) and perceived synchronicity (t311=2.353, P=.019) were found to influence convenience of Web-based health communities significantly, whereas inaccessibility (t311=3.189, P=.002) and discontinuity (t311=3.149, P=.002) were found to impact inconvenience of physical health facilities significantly. Meanwhile, both convenience of Web-based health communities (t311=2.353, P=.019) and inconvenience of physical health facilities (t311=2.787, P=.006) were found to affect patients? intention to interact with doctors in Web-based health communities significantly. Therefore, all the proposed hypotheses were supported. Conclusions: Through including factors from both Web-based health communities and physical health facilities, we can understand patients? intention to interact comprehensively. This study not only contributes to literature of doctor-patient interaction and Web-based health platforms but also provides implications to promote doctor-patient interaction online and offline. UR - http://www.jmir.org/2019/6/e13693/ UR - http://dx.doi.org/10.2196/13693 UR - http://www.ncbi.nlm.nih.gov/pubmed/31199296 ID - info:doi/10.2196/13693 ER - TY - JOUR AU - Gu, Gen AU - Zhang, Xingting AU - Zhu, Xingeng AU - Jian, Zhe AU - Chen, Ken AU - Wen, Dong AU - Gao, Li AU - Zhang, Shaodian AU - Wang, Fei AU - Ma, Handong AU - Lei, Jianbo PY - 2019/05/23 TI - Development of a Consumer Health Vocabulary by Mining Health Forum Texts Based on Word Embedding: Semiautomatic Approach JO - JMIR Med Inform SP - e12704 VL - 7 IS - 2 KW - consumer health vocabulary KW - word embedding KW - representation learning KW - natural language processing KW - consumer health information KW - ontology enrichment N2 - Background: The vocabulary gap between consumers and professionals in the medical domain hinders information seeking and communication. Consumer health vocabularies have been developed to aid such informatics applications. This purpose is best served if the vocabulary evolves with consumers? language. Objective: Our objective is to develop a method for identifying and adding new terms to consumer health vocabularies, so that it can keep up with the constantly evolving medical knowledge and language use. Methods: In this paper, we propose a consumer health term?finding framework based on a distributed word vector space model. We first learned word vectors from a large-scale text corpus and then adopted a supervised method with existing consumer health vocabularies for learning vector representation of words, which can provide additional supervised fine tuning after unsupervised word embedding learning. With a fine-tuned word vector space, we identified pairs of professional terms and their consumer variants by their semantic distance in the vector space. A subsequent manual review of the extracted and labeled pairs of entities was conducted to validate the results generated by the proposed approach. The results were evaluated using mean reciprocal rank (MRR). Results: Manual evaluation showed that it is feasible to identify alternative medical concepts by using professional or consumer concepts as queries in the word vector space without fine tuning, but the results are more promising in the final fine-tuned word vector space. The MRR values indicated that on an average, a professional or consumer concept is about 14th closest to its counterpart in the word vector space without fine tuning, and the MRR in the final fine-tuned word vector space is 8. Furthermore, the results demonstrate that our method can collect abbreviations and common typos frequently used by consumers. Conclusions: By integrating a large amount of text information and existing consumer health vocabularies, our method outperformed several baseline ranking methods and is effective for generating a list of candidate terms for human review during consumer health vocabulary development. UR - http://medinform.jmir.org/2019/2/e12704/ UR - http://dx.doi.org/10.2196/12704 UR - http://www.ncbi.nlm.nih.gov/pubmed/31124461 ID - info:doi/10.2196/12704 ER - TY - JOUR AU - Chiauzzi, Emil AU - Drahos, Jennifer AU - Sarkey, Sara AU - Curran, Christopher AU - Wang, Victor AU - Tomori, Dapo PY - 2019/05/16 TI - Patient Perspective of Cognitive Symptoms in Major Depressive Disorder: Retrospective Database and Prospective Survey Analyses JO - J Participat Med SP - e11167 VL - 11 IS - 2 KW - cognition KW - cognitive function KW - depression KW - major depressive disorder KW - patient-centered care KW - patient preference KW - relapse KW - remission KW - symptoms N2 - Background: Major depressive disorder (MDD) is a common and burdensome condition. The clinical understanding of MDD is shaped by current research, which lacks insight into the patient perspective. Objective: This two-part study aimed to generate data from PatientsLikeMe, an online patient network, on the perception of cognitive symptoms and their prioritization in MDD. Methods: A retrospective data analysis (study 1) was used to analyze data from the PatientsLikeMe community with self-reported MDD. Information on patient demographics, comorbidities, self-rated severity of MDD, treatment effectiveness, and specific symptoms of MDD was analyzed. A prospective electronic survey (study 2) was emailed to longstanding and recently active members of the PatientsLikeMe MDD community. Study 1 analysis informed the objectives of the study 2 survey, which were to determine symptom perception and prioritization, cognitive symptoms of MDD, residual symptoms, and medication effectiveness. Results: In study 1 (N=17,166), cognitive symptoms were frequently reported, including ?severe? difficulty in concentrating (28%). Difficulty in concentrating was reported even among patients with no/mild depression (80%) and those who considered their treatment successful (17%). In study 2 (N=2525), 23% (118/508) of patients cited cognitive symptoms as a treatment priority. Cognitive symptoms correlated with depression severity, including difficulty in making decisions, concentrating, and thinking clearly (rs=0.32, 0.36, and 0.34, respectively). Cognitive symptoms interfered with meaningful relationships and daily life tasks and had a profound impact on patients? ability to work and recover from depression. Conclusions: Patients acknowledge that cognitive dysfunction in MDD limits their ability to recover fully and return to a normal level of social and occupational functioning. Further clinical understanding and characterization of MDD for symptom prioritization and relapse risk due to residual cognitive impairment are required to help patients return to normal cognitive function and aid their overall recovery. UR - https://jopm.jmir.org/2019/2/e11167/ UR - http://dx.doi.org/10.2196/11167 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/11167 ER - TY - JOUR AU - Han, Peijin AU - Nicholson, Wanda AU - Norton, Anna AU - Graffeo, Karen AU - Singerman, Richard AU - King, Steven AU - Sundaresan, Aditi AU - Bennett, Wendy PY - 2019/05/10 TI - DiabetesSistersVoices: Virtual Patient Community to Identify Research Priorities for Women Living With Diabetes JO - J Med Internet Res SP - e13312 VL - 21 IS - 5 KW - social media KW - online social networking KW - women?s health KW - diabetes mellitus N2 - Background: Women with or at high risk of diabetes have unique health concerns across their life course. Effective methods are needed to engage women living with diabetes to develop and carry out a patient-centered research agenda. Objective: This study aimed to (1) describe the creation of DiabetesSistersVoices, a virtual patient community for women living with and at risk for diabetes and (2) assess the feasibility and acceptability of DiabetesSistersVoices for engaging women in talking about their experiences, health care, and research priorities. Methods: We partnered with a national advocacy organization to create DiabetesSistersVoices and to develop recruitment strategies, which included use of social media, Web-based newsletters, and weblinks through partnering organizations. Study inclusion criteria were as follows: Being a woman aged ?18 years, residing in the United States, and self-reporting a diagnosis of diabetes or risk of diabetes. Eligible participants were given access to DiabetesSistersVoices and completed online surveys at enrollment and 6 months. We assessed trends in participants? activities, including posting questions, sharing experiences about living with diabetes, and searching for posted resources. Results: We enrolled 332 women (white: 86.5%; type 1 diabetes: 76.2%; median age: 51 years [interquartile range: 31 to 59 years]) over 8 months. Most (41.6%, 138/332) were classified as being active users (ie, posting) of the virtual community, 36.1% (120/332) as observers (ie, logged in but no posts), and 22.3% (74/332) as never users (ie, completed baseline surveys but then never logged in). Online activities were constant during the study, although participants had the highest website usage during the first 10 weeks after their enrollment. Conclusions: We demonstrated the feasibility and acceptability of an online patient community for women living with diabetes by showing durability of recruitment and online usage over 6 months of testing. Next steps are to address barriers to joining a virtual patient community for women of color and women with type 2 diabetes to enhance inclusiveness and gain diverse perspectives to inform diabetes research. UR - https://www.jmir.org/2019/5/e13312/ UR - http://dx.doi.org/10.2196/13312 UR - http://www.ncbi.nlm.nih.gov/pubmed/31094360 ID - info:doi/10.2196/13312 ER - TY - JOUR AU - Dorst, Taylor Marian AU - Anders, H. Shilo AU - Chennupati, Sai AU - Chen, Qingxia AU - Purcell Jackson, Gretchen PY - 2019/05/09 TI - Health Information Technologies in the Support Systems of Pregnant Women and Their Caregivers: Mixed-Methods Study JO - J Med Internet Res SP - e10865 VL - 21 IS - 5 KW - pregnancy KW - social networks KW - social media KW - health information technology KW - caregivers KW - life stress N2 - Background: The quality and quantity of families? support systems during pregnancy can affect maternal and fetal outcomes. The support systems of expecting families can include many elements, such as family members, friends, and work or community groups. Emerging health information technologies (eg, social media, internet websites, and mobile apps) provide new resources for pregnant families to augment their support systems and to fill information gaps. Objective: This study sought to determine the number and nature of the components of the support systems of pregnant women and their caregivers (eg, family members) and the role of health information technologies in these support systems. We examined the differences between pregnant women?s support systems and those of their caregivers and the associations between support system composition and stress levels. Methods: We enrolled pregnant women and caregivers from advanced maternal-fetal and group prenatal care clinics. Participants completed surveys assessing sociodemographic characteristics, health literacy, numeracy, and stress levels and were asked to draw a picture of their support system. Support system elements were extracted from drawings, categorized by type (ie, individual persons, groups, technologies, and other) and summarized for pregnant women and caregivers. Participant characteristics and support system elements were compared using the Pearson chi-square test for categorical variables and Wilcoxon ranked sum test for continuous variables. Associations between support system characteristics and stress levels were measured with Spearman correlation coefficient. Results: The study enrolled 100 participants: 71 pregnant women and 29 caregivers. The support systems of pregnant women were significantly larger than those of caregivers?an average of 7.4 components for pregnant women and 5.4 components for caregivers (P=.003). For all participants, the most commonly reported support system elements were individual persons (408/680, 60.0%), followed by people groups (132/680, 19.4%), technologies (112/680, 16.5%), and other resources (28/680, 4.1%). Pregnant women?s and caregivers? technology preferences within their support systems differed?pregnant women more often identified informational websites, apps, and social media as parts of their support systems, whereas caregivers more frequently reported general internet search engines. The size and components of these support systems were not associated with levels of stress. Conclusions: This study is one of the first demonstrating that technologies comprise a substantial portion of the support systems of pregnant women and their caregivers. Pregnant women more frequently reported specific medical information websites as part of their support system, whereas caregivers more often reported general internet search engines. Although social support is important for maternal and fetal health outcomes, no associations among stress, support system size, and support system components were found in this study. As health information technologies continue to evolve and their adoption increases, their role in patient and caregiver support systems and their effects should be further explored. UR - https://www.jmir.org/2019/5/e10865/ UR - http://dx.doi.org/10.2196/10865 UR - http://www.ncbi.nlm.nih.gov/pubmed/31094327 ID - info:doi/10.2196/10865 ER - TY - JOUR AU - Milne, N. David AU - McCabe, L. Kathryn AU - Calvo, A. Rafael PY - 2019/04/26 TI - Improving Moderator Responsiveness in Online Peer Support Through Automated Triage JO - J Med Internet Res SP - e11410 VL - 21 IS - 4 KW - social support KW - triage KW - classification KW - natural language processing N2 - Background: Online peer support forums require oversight to ensure they remain safe and therapeutic. As online communities grow, they place a greater burden on their human moderators, which increases the likelihood that people at risk may be overlooked. This study evaluated the potential for machine learning to assist online peer support by directing moderators? attention where it is most needed. Objective: This study aimed to evaluate the accuracy of an automated triage system and the extent to which it influences moderator behavior. Methods: A machine learning classifier was trained to prioritize forum messages as green, amber, red, or crisis depending on how urgently they require attention from a moderator. This was then launched as a set of widgets injected into a popular online peer support forum hosted by ReachOut.com, an Australian Web-based youth mental health service that aims to intervene early in the onset of mental health problems in young people. The accuracy of the system was evaluated using a holdout test set of manually prioritized messages. The impact on moderator behavior was measured as response ratio and response latency, that is, the proportion of messages that receive at least one reply from a moderator and how long it took for these replies to be made. These measures were compared across 3 periods: before launch, after an informal launch, and after a formal launch accompanied by training. Results: The algorithm achieved 84% f-measure in identifying content that required a moderator response. Between prelaunch and post-training periods, response ratios increased by 0.9, 4.4, and 10.5 percentage points for messages labelled as crisis, red, and green, respectively, but decreased by 5.0 percentage points for amber messages. Logistic regression indicated that the triage system was a significant contributor to response ratios for green, amber, and red messages, but not for crisis messages. Response latency was significantly reduced (P<.001), between the same periods, by factors of 80%, 80%, 77%, and 12% for crisis, red, amber, and green messages, respectively. Regression analysis indicated that the triage system made a significant and unique contribution to reducing the time taken to respond to green, amber, and red messages, but not to crisis messages, after accounting for moderator and community activity. Conclusions: The triage system was generally accurate, and moderators were largely in agreement with how messages were prioritized. It had a modest effect on response ratios, primarily because moderators were already more likely to respond to high priority content before the introduction of triage. However, it significantly and substantially reduced the time taken for moderators to respond to prioritized content. Further evaluations are needed to assess the impact of mistakes made by the triage algorithm and how changes to moderator responsiveness impact the well-being of forum members. UR - https://www.jmir.org/2019/4/e11410/ UR - http://dx.doi.org/10.2196/11410 UR - http://www.ncbi.nlm.nih.gov/pubmed/31025945 ID - info:doi/10.2196/11410 ER - TY - JOUR AU - Lee, Eleanor AU - Cooper, J. Richard PY - 2019/04/25 TI - Codeine Addiction and Internet Forum Use and Support: Qualitative Netnographic Study JO - JMIR Ment Health SP - e12354 VL - 6 IS - 4 KW - codeine KW - addiction KW - abuse KW - opioid KW - internet KW - prescription KW - over-the-counter N2 - Background: The use of codeine as an analgesic is well-recognized, but there are increasing concerns that for some individuals continued use may lead to misuse, dependence, and fatalities. Research suggests that those affected may represent a hard-to-reach group who do not engage with formal treatment services. Objective: This study sought to explore the experiences of people with self-reported addiction to codeine and, specifically, how a social media forum is used to communicate with others about this issue. Methods: Using a qualitative netnographic methodology, the social media forum Mumsnet was used, with permission, and searches were undertaken in 2016 of any posts that related to codeine and addiction. A total of 95 relevant posts were identified; a purposive sample of 25 posts was selected to undertake subsequent six-stage thematic analysis and development of emerging themes. These 25 posts were posted between 2003 and 2016 and comprised 757 individual posts. Results: Individuals created posts to actively request help in relation to usually their own, but occasionally their partner?s or relative?s, problems relating to codeine use and self-reported ?addiction.? Varying levels of detail were provided in narratives of problematic codeine use. There were both positive and negative descriptions of side effects emerging, problems experiencing withdrawal, and failed attempts to discontinue codeine use. Mainly positive and supportive responses to posts were identified from those with either self-reported health profession experience or lay respondents, who often drew on their own experiences of similar problems. Treatment advice emerged in two main ways, either as signposting to formal health services or to informal approaches and often anecdotal advice about how to taper or use cold turkey techniques. Some posts were more critical of the original poster, and arguments and challenges to advice were not uncommon. Shame and stigma were often associated with users? posts and, while there was a desire to receive support and treatment advice in this forum, users often wanted to keep their codeine use hidden in other aspects of their lives. Distinctly different views emerged as to whether responsibility lay with prescribers or patients. Some users expressed anger toward doctors and their prescribing practices. Conclusions: This study provides a unique insight into how a public internet forum is used by individuals to confirm and seek support about problematic codeine use and of the ways others respond. The pseudonymous use of internet forums for such information and variation in treatment options suggested by often lay respondents suggest that increased formal support and awareness about codeine addiction are needed. There may be opportunities for providing further support directly on such online forums. Improvements in prescribing codeine and in the over-the-counter supply of codeine are required to prevent problematic use from occurring. UR - http://mental.jmir.org/2019/4/e12354/ UR - http://dx.doi.org/10.2196/12354 UR - http://www.ncbi.nlm.nih.gov/pubmed/31021328 ID - info:doi/10.2196/12354 ER - TY - JOUR AU - Lindsay, Sally AU - Cagliostro, Elaine AU - Stinson, Jennifer AU - Leck, Joanne PY - 2019/04/24 TI - A 4-Week Electronic-Mentoring Employment Intervention for Youth With Physical Disabilities: Pilot Randomized Controlled Trial JO - JMIR Pediatr Parent SP - e12653 VL - 2 IS - 1 KW - social support KW - mentor KW - youth KW - rehabilitation KW - occupational therapy N2 - Background: Youth with disabilities are more likely to live in poverty and be unemployed compared with youth without disabilities. Such trends are often a result of a lack of support, inaccessible jobs, environmental barriers, and discriminatory attitudes toward people with disabilities. Youth with disabilities also face barriers in accessing vocational preparation programs. One encouraging way that could help address challenges that youth encounter is by providing support through electronic mentoring (e-mentoring). Objective: The objective of this study was to assess the feasibility of a 4-week Web-based peer e-mentoring employment intervention for youth with physical disabilities. Methods: We conducted a pilot randomized controlled trial (RCT) to evaluate our intervention, Empowering youth towards employment. Participants included youth aged 15 to 25 years who were randomly assigned to an experimental (mentored) or control (nonmentored) group. Our intervention involved having trained youth mentors (ie, near peers who also had a disability) lead Web-based discussion forums while offering peer support and resources, which involved 12 modules (3 topics a week for 4 weeks). Primary outcomes focused on implementation (ie, feasibility and acceptability), whereas secondary outcomes focused on effectiveness (ie, measures of self-determination, career maturity, and social support). Results: A total of 28 youth (mean age 19.62, SD 3.53; 14/28, 50% female) completed the RCT in 3 intervention groups and 2 control groups (intervention n=18, control n=10). Participants reported satisfaction with the program and that it was feasible and acceptable. Youth?s mean engagement level with the program was 6.44 (SD 2.33) for the experimental group and 5.56 (SD 3.53) for controls. Participants in the intervention group did not demonstrate any significant improvements in social support, career maturity, or self-determination compared with those in the control group. No adverse events were reported. Conclusions: The Empowering youth towards employment e-mentoring intervention needs further testing with a larger sample and different length of formats to understand how it may have an impact on employment outcomes for youth with disabilities. Trial Registration: ClinicalTrials.gov NCT02522507; https://clinicaltrials.gov/ct2/show/NCT02522507 (Archived by WebCite at http://www.webcitation.org/77a3T4qrE) UR - http://pediatrics.jmir.org/2019/1/e12653/ UR - http://dx.doi.org/10.2196/12653 UR - http://www.ncbi.nlm.nih.gov/pubmed/31518302 ID - info:doi/10.2196/12653 ER - TY - JOUR AU - McCaig, Duncan AU - Elliott, T. Mark AU - Siew, SQ Cynthia AU - Walasek, Lukasz AU - Meyer, Caroline PY - 2019/04/22 TI - Profiling Commenters on Mental Health?Related Online Forums: A Methodological Example Focusing on Eating Disorder?Related Commenters JO - JMIR Ment Health SP - e12555 VL - 6 IS - 4 KW - mental health KW - eating disorders KW - social media KW - social networks N2 - Background: Understanding the characteristics of commenters on mental health?related online forums is vital for the development of effective psychological interventions in these communities. The way in which commenters interact can enhance our understanding of their characteristics. Objective: Using eating disorder?related (EDR) forums as an example, this study detailed a methodology that aimed to determine subtypes of mental health?related forums and profile their commenters based on the other forums to which they contributed. Methods: The researchers identified all public EDR forums (with ?500 contributing commenters between March 2017 and February 2018) on a large Web-based discussion platform (Reddit). A mixed-methods approach comprising network analysis with community detection, text mining, and manual review identified subtypes of EDR forums. For each subtype, another network analysis with community detection was conducted using the EDR forum commenter overlap between 50 forums on which the commenters also commented. The topics of forums in each detected community were then manually reviewed to identify the shared interests of each subtype of EDR forum commenters. Results: Six subtypes of EDR forums were identified, to which 14,024 commenters had contributed. The results focus on 2 subtypes?proeating disorder and thinspiration?and communities of commenters within both subtypes. Within the proeating disorder subtype, 3 communities of commenters were detected that related to the body and eating, mental health, and women, appearance, and mixed topics. With regard to the thinspiration group, 78.17% (849/1086) of commenters had also commented on pornographic forums and 16.66% (181/1086) had contributed to proeating disorder forums. Conclusions: The article exemplifies a methodology that provides insight into subtypes of mental health?related forums and the characteristics of their commenters. The findings have implications for future research and Web-based psychological interventions. With the publicly available data and code provided, researchers can easily reproduce the analyses or utilize the methodology to investigate other mental health?related forums. UR - http://mental.jmir.org/2019/4/e12555/ UR - http://dx.doi.org/10.2196/12555 UR - http://www.ncbi.nlm.nih.gov/pubmed/31008715 ID - info:doi/10.2196/12555 ER - TY - JOUR AU - Verberne, Suzan AU - Batenburg, Anika AU - Sanders, Remco AU - van Eenbergen, Mies AU - Das, Enny AU - Lambooij, S. Mattijs PY - 2019/04/17 TI - Analyzing Empowerment Processes Among Cancer Patients in an Online Community: A Text Mining Approach JO - JMIR Cancer SP - e9887 VL - 5 IS - 1 KW - cancer KW - health communication KW - online social networking KW - empowerment KW - text mining KW - machine learning N2 - Background: Peer-to-peer online support groups and the discussion forums in these groups can help patients by providing opportunities for increasing their empowerment. Most previous research on online empowerment and online social support uses qualitative methods or questionnaires to gain insight into the dynamics of online empowerment processes. Objective: The overall goal of this study was to analyze the presence of the empowerment processes in the online peer-to-peer communication of people affected by cancer, using text mining techniques. Use of these relatively new methods enables us to study social processes such as empowerment on a large scale and with unsolicited data. Methods: The sample consisted of 5534 messages in 1708 threads, written by 2071 users of a forum for cancer patients and their relatives. We labeled the posts in our sample with 2 types of labels: labels referring to empowerment processes and labels denoting psychological processes. The latter were identified using the Linguistic Inquiry and Word Count (LIWC) method. Both groups of labels were automatically assigned to posts. Automatic labeling of the empowerment processes was done by text classifiers trained on a manually labeled subsample. For the automatic labeling of the LIWC categories, we used the Dutch version of the LIWC consisting of a total of 66 word categories that are assigned to text based on occurrences of words in the text. After the automatic labeling with both types of labels, we investigated (1) the relationship between empowerment processes and the intensity of online participation, (2) the relationship between empowerment processes and the LIWC categories, and (3) the differences between patients with different types of cancer. Results: The precision of the automatic labeling was 85.6%, which we considered to be sufficient for automatically labeling the complete corpus and doing further analyses on the labeled data. Overall, 62.94% (3482/5532) of the messages contained a narrative, 23.83% (1318/5532) a question, and 27.49% (1521/5532) informational support. Emotional support and references to external sources were less frequent. Users with more posts more often referred to an external source and more often provided informational support and emotional support (Kendall ?>0.2; P<.001) and less often shared narratives (Kendall ?=?0.297; P<.001). A number of LIWC categories are significant predictors for the empowerment processes: words expressing assent (ok and yes) and emotional processes (expressions of feelings) are significant positive predictors for emotional support (P=.002). The differences between patients with different types of cancer are small. Conclusions: Empowerment processes are associated with the intensity of online use. The relationship between linguistic analyses and empowerment processes indicates that empowerment processes can be identified from the occurrences of specific linguistic cues denoting psychological processes. UR - http://cancer.jmir.org/2019/1/e9887/ UR - http://dx.doi.org/10.2196/cancer.9887 UR - http://www.ncbi.nlm.nih.gov/pubmed/30994468 ID - info:doi/10.2196/cancer.9887 ER - TY - JOUR AU - Tong, Ly Huong AU - Coiera, Enrico AU - Tong, William AU - Wang, Ying AU - Quiroz, C. Juan AU - Martin, Paige AU - Laranjo, Liliana PY - 2019/03/28 TI - Efficacy of a Mobile Social Networking Intervention in Promoting Physical Activity: Quasi-Experimental Study JO - JMIR Mhealth Uhealth SP - e12181 VL - 7 IS - 3 KW - mobile apps KW - fitness trackers KW - exercise KW - social networking N2 - Background: Technological interventions such as mobile apps, Web-based social networks, and wearable trackers have the potential to influence physical activity; yet, only a few studies have examined the efficacy of an intervention bundle combining these different technologies. Objective: This study aimed to pilot test an intervention composed of a social networking mobile app, connected with a wearable tracker, and investigate its efficacy in improving physical activity, as well as explore participant engagement and the usability of the app. Methods: This was a pre-post quasi-experimental study with 1 arm, where participants were subjected to the intervention for a 6-month period. The primary outcome measure was the difference in daily step count between baseline and 6 months. Secondary outcome measures included engagement with the intervention and system usability. Descriptive and inferential statistical tests were conducted; posthoc subgroup analyses were carried out for participants with different levels of steps at baseline, app usage, and social features usage. Results: A total of 55 participants were enrolled in the study; the mean age was 23.6 years and 28 (51%) were female. There was a nonstatistically significant increase in the average daily step count between baseline and 6 months (mean change=14.5 steps/day, P=.98, 95% CI ?1136.5 to 1107.5). Subgroup analysis comparing the higher and lower physical activity groups at baseline showed that the latter had a statistically significantly higher increase in their daily step count (group difference in mean change from baseline to 6 months=3025 steps per day, P=.008, 95% CI 837.9-5211.8). At 6 months, the retention rate was 82% (45/55); app usage decreased over time. The mean system usability score was 60.1 (SD 19.2). Conclusions: This study showed the preliminary efficacy of a mobile social networking intervention, integrated with a wearable tracker to promote physical activity, particularly for less physically active subgroups of the population. Future research should explore how to address challenges faced by physically inactive people to provide tailored advices. In addition, users? perspectives should be explored to shed light on factors that might influence their engagement with the intervention. UR - http://mhealth.jmir.org/2019/3/e12181/ UR - http://dx.doi.org/10.2196/12181 UR - http://www.ncbi.nlm.nih.gov/pubmed/30920379 ID - info:doi/10.2196/12181 ER - TY - JOUR AU - Smith-Merry, Jennifer AU - Goggin, Gerard AU - Campbell, Andrew AU - McKenzie, Kirsty AU - Ridout, Brad AU - Baylosis, Cherry PY - 2019/03/26 TI - Social Connection and Online Engagement: Insights From Interviews With Users of a Mental Health Online Forum JO - JMIR Ment Health SP - e11084 VL - 6 IS - 3 KW - internet KW - mental health KW - social stigma KW - self-help groups KW - qualitative research KW - mental health recovery KW - mental disorders N2 - Background: Over the past 2 decades, online forums for mental health support have emerged as an important tool for improving mental health and well-being. There has been important research that analyzes the content of forum posts, studies on how and why individuals engage with forums, and how extensively forums are used. However, we still lack insights into key questions on how they are experienced from the perspective of their users, especially those in rural and remote settings. Objective: The aim of our study was to investigate the dynamics, benefits, and challenges of a generalized peer-to-peer mental health online forum from a user perspective; in particular, to better explore and understand user perspectives on connection, engagement, and support offered in such forums; information and advice they gained; and what issues they encountered. We studied experiences of the forums from the perspective of both people with lived experience of mental illness and people who care for people with mental illness. Methods: To understand the experience of forum users, we devised a qualitative study utilizing semistructured interviews with 17 participants (12 women and 5 men). Data were transcribed, and a thematic analysis was undertaken. Results: The study identified 3 key themes: participants experienced considerable social and geographical isolation, which the forums helped to address; participants sought out the forums to find a social connection that was lacking in their everyday lives; and participants used the forums to both find and provide information and practical advice. Conclusions: The study suggests that online peer support provides a critical, ongoing role in providing social connection for people with a lived experience of mental ill-health and their carers, especially for those living in rural and remote areas. Forums may offer a way for individuals to develop their own understanding of recovery through reflecting on the recovery experiences and peer support shown by others and individuals enacting peer support themselves. Key to the success of this online forum was the availability of appropriate moderation, professional support, and advice. UR - http://mental.jmir.org/2019/3/e11084/ UR - http://dx.doi.org/10.2196/11084 UR - http://www.ncbi.nlm.nih.gov/pubmed/30912760 ID - info:doi/10.2196/11084 ER - TY - JOUR AU - Laurence, Colleen AU - Wispelwey, Erin AU - Flickinger, E. Tabor AU - Grabowski, Marika AU - Waldman, Lena Ava AU - Plews-Ogan, Erin AU - Debolt, Claire AU - Reynolds, George AU - Cohn, Wendy AU - Ingersoll, Karen AU - Dillingham, Rebecca PY - 2019/03/20 TI - Development of PositiveLinks: A Mobile Phone App to Promote Linkage and Retention in Care for People With HIV JO - JMIR Form Res SP - e11578 VL - 3 IS - 1 KW - mHealth KW - HIV KW - treatment adherence and compliance KW - retention in care N2 - Background: Linkage to and retention in HIV care are challenging, especially in the Southeastern United States. The rise in mobile phone app use and the potential for an app to deliver just in time messaging provides a new opportunity to improve linkage and retention among people living with HIV (PLWH). Objective: This study aimed to develop an app to engage, link, and retain people in care. We evaluated the acceptability, feasibility, and impact of the app among users. Methods: App development was informed by principles of chronic disease self-management and formative interviews with PLWH. Once developed, the app was distributed among participants, and usability feedback was incorporated in subsequent iterations. We interviewed app users after 3 weeks to identify usability issues, need for training on the phone or app, and to assess acceptability. We tracked and analyzed usage of app features for the cohort over 2 years. Results: A total of 77 participants used the app during the pilot study. The query response rate for the first 2 years was 47.7%. Query response declined at a rate of 0.67% per month. The community message board was the most popular feature, and 77.9% (60/77) of users posted on the board at least once during the 2 years. Conclusions: The PositiveLinks app was feasible and acceptable among nonurban PLWH. High participation on the community message board suggests that social support from peers is important for people recently diagnosed with or returning to care for HIV. UR - http://formative.jmir.org/2019/1/e11578/ UR - http://dx.doi.org/10.2196/11578 UR - http://www.ncbi.nlm.nih.gov/pubmed/30892269 ID - info:doi/10.2196/11578 ER - TY - JOUR AU - Fortuna, Karen AU - Barr, Paul AU - Goldstein, Carly AU - Walker, Robert AU - Brewer, LaPrincess AU - Zagaria, Alexandra AU - Bartels, Stephen PY - 2019/03/19 TI - Application of Community-Engaged Research to Inform the Development and Implementation of a Peer-Delivered Mobile Health Intervention for Adults With Serious Mental Illness JO - J Participat Med SP - e12380 VL - 11 IS - 1 KW - stakeholder participation KW - mental health KW - patient participation KW - consumer advocacy KW - mobile health N2 - Background: Involving certified peer specialists in all phases of intervention development and research is a high priority to advance peer-delivered services. Certified peer specialists are individuals with a lived experience of a mental illness, and they are trained and accredited to provide Medicaid reimbursable mental health services. Community-engaged research can facilitate the development and implementation of peer-delivered interventions; however, little is known about the processes. We present our application of community-engaged research to inform the development and implementation of a peer-delivered mobile health (mHealth) intervention for adults with serious mental illness. Objective: The aim of this study was to present a framework that can be used as a guide for researchers and certified peer specialists to develop and implement peer-delivered mHealth interventions in community settings. Methods: Informed by principles of community-engaged research, we developed the Academic Researchers-Certified Peer Specialists mHealth Research Continuum. Principles of community-engaged research included in the Continuum include the following: (1) develop a clear understanding of the purpose, goal, and population involved in community change; (2) become knowledgeable about all aspects of the community; (3) interact and establish relationships with the community; (4) encourage community self-determination; (5) partner with the community; (6) respect community diversity and culture; (7) activate community assets and develop capacity; (8) maintain flexibility; and (9) commit to long-term collaboration. Results: Overall, 4 certified peer specialists participated in all phases of intervention development and research. Individuals who participated in the Academic Researchers-Certified Peer Specialists? mHealth Research Continuum collaborated on 5 studies advancing peers? roles in services delivery using mHealth and secured grant funding from a foundation to sustain their study. The Academic Researchers-Certified Peer Specialists? mHealth Research Continuum has created a rare environment of inclusion by combining scientific expertise and certified peer specialists? expertise to achieve a shared vision. Conclusions: This study delineates a process by which academic researchers and certified peer specialists participated in community-engaged research to develop and implement peer-delivered mHealth interventions in community settings. UR - http://jopm.jmir.org/2019/1/e12380/ UR - http://dx.doi.org/10.2196/12380 UR - http://www.ncbi.nlm.nih.gov/pubmed/32095314 ID - info:doi/10.2196/12380 ER - TY - JOUR AU - Pearson, E. Stephanie AU - Taylor, John AU - Hoare, J. Derek AU - Patel, Poulam AU - Baguley, M. David PY - 2019/03/14 TI - Exploring the Experiences of Cancer Patients With Chemotherapy-Induced Ototoxicity: Qualitative Study Using Online Health Care Forums JO - JMIR Cancer SP - e10883 VL - 5 IS - 1 KW - quality of life KW - neoplasms KW - drug-related side effects and adverse reactions KW - hearing loss KW - tinnitus KW - online social networking KW - internet KW - eHealth KW - social support N2 - Background: Many cancer patients and survivors experience permanent and life-debilitating effects, such as ototoxicity, from treatment. Ototoxicity manifests as high-frequency hearing loss and tinnitus, which can have a detrimental effect on the quality of life (QoL) of those affected. Currently, there is little information and support offered to these patients who experience ototoxicity, potentially leading to many being undiagnosed and untreated. Objective: The aim of this study was to explore the extent of ototoxic side effects, such as hearing loss and tinnitus, and their impact on cancer patients following chemotherapy treatment. Secondary objectives included detecting the time periods of onset and duration of the ototoxicity and identifying what support was available to this population. Methods: Posts from publicly available online forums were thematically analyzed using the guidelines by Braun and Clarke. A coding manual was iteratively developed to create a framework for the analysis of the ototoxicity experience among the cancer population. Results: A total of 9 relevant online forums were identified, consisting of 86 threads and 570 posts from 377 members. Following the bottom-up thematic analysis, 6 major themes were identified: nature of ototoxicity, time of experienced ototoxicity, information on ototoxicity, quality of life, therapies, and online social support. Conclusions: There was a significant number of reports expressing concerns about the lack of information on the risk of ototoxicity. More support for those suffering is needed; for example, improved interdepartmental communication between oncology and audiology services could optimize patient care. Patients should also be encouraged to communicate with their health care professionals about their ototoxicity and relay how their QoL is impacted by ototoxicity when accessing support. Tinnitus was the most common concern and was associated with distress. Hearing loss was less common; however, it was associated with fear and employment issues. Those who reported preexisting conditions were fearful about worsening their condition as their QoL was already impacted. UR - http://cancer.jmir.org/2019/1/e10883/ UR - http://dx.doi.org/10.2196/10883 UR - http://www.ncbi.nlm.nih.gov/pubmed/30869640 ID - info:doi/10.2196/10883 ER - TY - JOUR AU - Della Rosa, Sara AU - Sen, Falguni PY - 2019/02/11 TI - Health Topics on Facebook Groups: Content Analysis of Posts in Multiple Sclerosis Communities JO - Interact J Med Res SP - e10146 VL - 8 IS - 1 KW - social network KW - health information KW - health care internet KW - content analysis KW - Facebook N2 - Background: Social network sites (SNSs) are being increasingly used to exchange health information between patients and practitioners, pharmaceutical companies, and research centers. Research contributions have explored the contents of such exchanges discussed online. They have categorized the topics discussed and explored the engagement levels of these discussions. Objective: This research aimed at investigating the potential role of SNSs in health care. Specifically it provides an information-clustering analysis of the health information available on SNSs and develops a research design that allows an investigation of this information in enhancing health care research and delivery. In addition, this research aims at testing whether SNSs are valid tools for sharing drug-related information by patients. Methods: This research is based on a specific chronic disease: multiple sclerosis. We searched Facebook to identify and research the social media groups related to this condition. The analysis was restricted to public groups for privacy concerns. We created a database by downloading posts from two main groups (in the English language). Subsequently, we performed a content analysis and statistical analysis; this allowed us to explore the differences between categories, their engagement levels, and the types of posts shared. The mean level of engagement for each topic was analyzed using a 1-way analysis of variance. Results: From a sample of 7029 posts, initial results showed that there were 8 information categories that resonated (percentage of times the topic appears in our sample) with those who post on Facebook: information and awareness (4923/7029, 70.04%), event advertising and petitions (365/7029, 5.19%), fundraising (354/7029, 5.04%), patient support (217/7029, 3.09%), drug discussion (144/7029, 2.05%), clinical trials and research studies (59/7029, 0.84%), product and drug advertising (48/7029, 0.68%), and other (919/7029, 13.07%). Initial analysis showed that comments and likes (as measures of engagement level) are the most frequent indicators and measures of level of engagement. Our results show a high engagement level (in terms of views, likes, comments, etc) for patient support and information and awareness. In addition, although drug discussion had a low resonance, it had an unexpected highly engagement level which we found worthy of further exploration. Conclusions: SNSs have become important tools for patients and health care practitioners to share or seek information. We identified the type of information shared and how the public reacted to it. Our research confirmed that the topics discussed in social media related to specific diseases such as multiple sclerosis are similar to the information categories observed by other researchers. We unexpectedly found other categories such as drug discussion. These and other results of our study enhance our understanding of how content is disseminated and perceived within a specific disease-based community. We concluded that this information has useful implications in the design of prevention campaigns, educational programs, and chronic disease management. UR - http://www.i-jmr.org/2019/1/e10146/ UR - http://dx.doi.org/10.2196/10146 UR - http://www.ncbi.nlm.nih.gov/pubmed/30741640 ID - info:doi/10.2196/10146 ER - TY - JOUR AU - Wasilewski, B. Marina AU - Nonoyama, Mika AU - Dale, Craig AU - McKim, A. Douglas AU - Road, Jeremy AU - Leasa, David AU - Goldstein, Roger AU - Rose, Louise PY - 2019/02/06 TI - Development of a Web-Based Peer Support Program for Family Caregivers of Ventilator-Assisted Individuals Living in the Community: Protocol for a Pilot Randomized Controlled Trial JO - JMIR Res Protoc SP - e11827 VL - 8 IS - 2 KW - intervention KW - caregivers KW - peer support KW - mechanical ventilation N2 - Background: Across Europe, Canada, Australia, and the United States, the prevalence of home mechanical ventilation (HMV) prevalence is 6.6-12.9 per 100,000. At-home ventilator-assisted individuals (VAIs) are often vulnerable and highly comorbid, requiring complex care. In Canada, most VAI care is provided by family, leading to poor health-related quality of life and increased caregiver burden. No supportive interventions or peer support programs are tailored to VAI caregivers. Owing to the financial, geographic, and time limitations, Web-based support delivery may especially meet VAI family caregiver needs. We have developed a peer mentor training and Web-based peer support program for VAI caregivers including information-sharing, peer-to-peer communication, and peer mentorship. Objective: Study Stage 1 aims to (1) evaluate the face and content validity of the peer mentor training program and (2) investigate participant satisfaction. Study Stage 2 aims to evaluate (1) the feasibility of participant recruitment and Web-based program delivery; (2) acceptability, usability, and satisfactoriness; (3) experiences of caregivers and peer mentors with the Web-based peer support program; and (4) effect of the Web-based peer support program on caregiver health outcomes. Methods: Study Stage 1: We will train 7 caregivers to act as peer mentors for the Web-based peer support program trial; they will complete questionnaires rating the utility of individual training sessions and the training program overall. Study Stage 2: We will recruit 30 caregiver peers for a pilot randomized controlled trial of the 12-week Web-based peer support program using a waitlist control; the program includes private chat, a public discussion forum, and weekly moderated chats. Caregiver peers will be randomized to the intervention or waitlist control group using a 1:1 ratio using Randomize.net. Both groups will complete pre- and postintervention health outcome questionnaires (ie, caregiving impact, mastery, coping, personal gain, positive affect, and depression). Caregiver peers in the intervention arm will only complete a program evaluation and will be invited to participate in an interview to provide insight into their experience. Peer mentors will be invited to participate in a Web-based focus group to provide insight into their experience as mentors. We will judge the feasibility per the number of recruitment and program delivery goals met, use analysis of covariance to compare health outcomes between intervention and control groups, and analyze qualitative data thematically. Results: Peer mentor training was completed with 5 caregivers in July 2018. To date, 2 caregivers have beta-tested the website, and the Web-based peer support program trial will commence in September 2018. Results are expected by early 2019. Conclusions: This study will result in the production and initial evaluation of a rigorously developed, evidence- and stakeholder-informed Web-based peer training and peer support program for caregivers of VAIs residing at home. International Registered Report Identifier (IRRID): PRR1-10.2196/11827 UR - http://www.researchprotocols.org/2019/2/e11827/ UR - http://dx.doi.org/10.2196/11827 UR - http://www.ncbi.nlm.nih.gov/pubmed/30724737 ID - info:doi/10.2196/11827 ER - TY - JOUR AU - Knoepke, E. Christopher AU - Slack, Hogan D. AU - Ingle, Pilar M. AU - Matlock, D. Daniel AU - Marzec, N. Lucas PY - 2018/12/04 TI - Quality of Medical Advice Provided Between Members of a Web-Based Message Board for Patients With Implantable Defibrillators: Mixed-Methods Study JO - JMIR Cardio SP - e11358 VL - 2 IS - 2 KW - education of patients KW - information sharing KW - implantable cardioverter-defibrillator, data accuracy N2 - Background: Patients use Web-based medical information to understand medical conditions and treatments. A number of efforts have been made to understand the quality of professionally created content; however, none have described the quality of advice being provided between anonymous members of Web-based message boards. Objective: The objective of this study was to characterize the quality of medical information provided between members of an anonymous internet message board addressing treatment with an implantable cardioverter-defibrillator (ICD). Methods: We quantitatively analyzed 2 years of discussions using a mixed inductive-deductive framework, first, for instances in which members provided medical advice and, then, for the quality of the advice. Results: We identified 82 instances of medical advice within 127 discussions. Advice covered 6 topical areas: (1) Device information, (2) Programming, (3) Cardiovascular disease, (4) Lead management, (5) Activity restriction, and (6) Management of other conditions. Across all advice, 50% (41/82) was deemed generally appropriate, 24% (20/82) inappropriate for most patients, 6% (5/82) controversial, and 20% (16/82) without sufficient context. Proportions of quality categories varied between topical areas. We have included representative examples. Conclusions: The quality of advice shared between anonymous members of a message board regarding ICDs varied considerably according to topical area and the specificity of advice. This report provides a model to describe the quality of the available Web-based patient-generated material. UR - http://cardio.jmir.org/2018/2/e11358/ UR - http://dx.doi.org/10.2196/11358 UR - http://www.ncbi.nlm.nih.gov/pubmed/31758775 ID - info:doi/10.2196/11358 ER - TY - JOUR AU - Dulli, Lisa AU - Ridgeway, Kathleen AU - Packer, Catherine AU - Plourde, F. Kate AU - Mumuni, Tolulope AU - Idaboh, Tosin AU - Olumide, Adesola AU - Ojengbede, Oladosu AU - McCarraher, R. Donna PY - 2018/11/28 TI - An Online Support Group Intervention for Adolescents Living with HIV in Nigeria: A Pre-Post Test Study JO - JMIR Public Health Surveill SP - e12397 VL - 4 IS - 4 KW - adolescents KW - digital health intervention KW - HIV care continuum KW - social support N2 - Background: Adolescents living with HIV (ALHIVs) enrolled in HIV treatment services experience greater loss to follow-up and suboptimal adherence than other age groups. HIV-related stigma, disclosure-related issues, lack of social support, and limited HIV knowledge impede adherence to antiretroviral therapy (ART) and retention in HIV services. The 90-90-90 goals for ALHIVs will only be met through strategies targeted to meet their specific needs. Objectives: We aimed to evaluate the feasibility of implementing a social media-based intervention to improve HIV knowledge, social support, ART adherence, and retention among ALHIV aged 15-19 years on ART in Nigeria. Methods: We conducted a single-group pre-post test study from June 2017 to January 2018. We adapted an existing support group curriculum and delivered it through trained facilitators in 5 support groups by using Facebook groups. This pilot intervention included five 1-week sessions. We conducted structured interviews with participants before and after the intervention, extracted clinical data, and documented intervention implementation and participation. In-depth interviews were conducted with a subset of participants at study completion. Quantitative data from structured interviews and group participation data were summarized descriptively, and qualitative data were coded and summarized. Results: A total of 41 ALHIV enrolled in the study. At baseline, 93% of participants reported existing phone access; 65% used the internet, and 64% were Facebook users. In addition, 37 participants completed the 5-session intervention, 32 actively posted comments in at least one session online, and at least half commented in each of the 5 sessions. Facilitators delivered most sessions as intended and on-time. Participants were enthusiastic about the intervention. Aspects of the intervention liked most by participants included interacting with other ALHIVs; learning about HIV; and sharing questions, experiences, and fears. The key recommendations were to include larger support groups and encourage more group interaction. Specific recommendations on various intervention components were made to improve the intervention. Conclusions: This novel intervention was feasible to implement in a predominantly suburban and rural Nigerian setting. Social media may be leveraged to provide much-needed information and social support on platforms accessible and familiar to many people, even in resource-constrained communities. Our findings have been incorporated into the intervention, and an outcome study is underway. Trial Registration: ClinicalTrials.gov NCT03076996; https://clinicaltrials.gov/ct2/show/NCT03076996 (Archived by WebCite at http://www.webcitation.org/73oCCEBBC). UR - http://publichealth.jmir.org/2018/4/e12397/ UR - http://dx.doi.org/10.2196/12397 UR - http://www.ncbi.nlm.nih.gov/pubmed/30487116 ID - info:doi/10.2196/12397 ER - TY - JOUR AU - DeJohn, D. Amber AU - Schulz, English Emily AU - Pearson, L. Amber AU - Lachmar, Megan E. AU - Wittenborn, K. Andrea PY - 2018/11/05 TI - Identifying and Understanding Communities Using Twitter to Connect About Depression: Cross-Sectional Study JO - JMIR Ment Health SP - e61 VL - 5 IS - 4 KW - depression KW - Web-based KW - social connection KW - Twitter KW - tweet KW - online communities N2 - Background: Depression is the leading cause of diseases globally and is often characterized by a lack of social connection. With the rise of social media, it is seen that Twitter users are seeking Web-based connections for depression. Objective: This study aimed to identify communities where Twitter users tweeted using the hashtag #MyDepressionLooksLike to connect about depression. Once identified, we wanted to understand which community characteristics correlated to Twitter users turning to a Web-based community to connect about depression. Methods: Tweets were collected using NCapture software from May 25 to June 1, 2016 during the Mental Health Month (n=104) in the northeastern United States and Washington DC. After mapping tweets, we used a Poisson multilevel regression model to predict tweets per community (county) offset by the population and adjusted for percent female, percent population aged 15-44 years, percent white, percent below poverty, and percent single-person households. We then compared predicted versus observed counts and calculated tweeting index values (TIVs) to represent undertweeting and overtweeting. Last, we examined trends in community characteristics by TIV using Pearson correlation. Results: We found significant associations between tweet counts and area-level proportions of females, single-person households, and population aged 15-44 years. TIVs were lower than expected (TIV 1) in eastern, seaboard areas of the study region. There were communities tweeting as expected in the western, inland areas (TIV 2). Counties tweeting more than expected were generally scattered throughout the study region with a small cluster at the base of Maine. When examining community characteristics and overtweeting and undertweeting by county, we observed a clear upward gradient in several types of nonprofits and TIV values. However, we also observed U-shaped relationships for many community factors, suggesting that the same characteristics were correlated with both overtweeting and undertweeting. Conclusions: Our findings suggest that Web-based communities, rather than replacing physical connection, may complement or serve as proxies for offline social communities, as seen through the consistent correlations between higher levels of tweeting and abundant nonprofits. Future research could expand the spatiotemporal scope to confirm these findings. UR - http://mental.jmir.org/2018/4/e61/ UR - http://dx.doi.org/10.2196/mental.9533 UR - http://www.ncbi.nlm.nih.gov/pubmed/30401662 ID - info:doi/10.2196/mental.9533 ER - TY - JOUR AU - Zolnoori, Maryam AU - Fung, Wah Kin AU - Fontelo, Paul AU - Kharrazi, Hadi AU - Faiola, Anthony AU - Wu, Shirley Yi Shuan AU - Stoffel, Virginia AU - Patrick, Timothy PY - 2018/9/30 TI - Identifying the Underlying Factors Associated With Patients? Attitudes Toward Antidepressants: Qualitative and Quantitative Analysis of Patient Drug Reviews JO - JMIR Ment Health SP - e10726 VL - 5 IS - 4 KW - medication adherence KW - attitude KW - perception KW - antidepressive agents KW - patient-centered care KW - chronic disease KW - depression KW - community networks KW - internet KW - social media KW - data mining KW - framework method N2 - Background: Nonadherence to antidepressants is a major obstacle to deriving antidepressants? therapeutic benefits, resulting in significant burdens on the individuals and the health care system. Several studies have shown that nonadherence is weakly associated with personal and clinical variables but strongly associated with patients? beliefs and attitudes toward medications. Patients? drug review posts in online health care communities might provide a significant insight into patients? attitude toward antidepressants and could be used to address the challenges of self-report methods such as patients? recruitment. Objective: The aim of this study was to use patient-generated data to identify factors affecting the patient?s attitude toward 4 antidepressants drugs (sertraline [Zoloft], escitalopram [Lexapro], duloxetine [Cymbalta], and venlafaxine [Effexor XR]), which in turn, is a strong determinant of treatment nonadherence. We hypothesized that clinical variables (drug effectiveness; adverse drug reactions, ADRs; perceived distress from ADRs, ADR-PD; and duration of treatment) and personal variables (age, gender, and patients? knowledge about medications) are associated with patients? attitude toward antidepressants, and experience of ADRs and drug ineffectiveness are strongly associated with negative attitude. Methods: We used both qualitative and quantitative methods to analyze the dataset. Patients? drug reviews were randomly selected from a health care forum called askapatient. The Framework method was used to build the analytical framework containing the themes for developing structured data from the qualitative drug reviews. Then, 4 annotators coded the drug reviews at the sentence level using the analytical framework. After managing missing values, we used chi-square and ordinal logistic regression to test and model the association between variables and attitude. Results: A total of 892 reviews posted between February 2001 and September 2016 were analyzed. Most of the patients were females (680/892, 76.2%) and aged less than 40 years (540/892, 60.5%). Patient attitude was significantly (P<.001) associated with experience of ADRs, ADR-PD, drug effectiveness, perceived lack of knowledge, experience of withdrawal, and duration of usage, whereas oth age (F4,874=0.72, P=.58) and gender (?24=2.7, P=.21) were not found to be associated with patient attitudes. Moreover, modeling the relationship between variables and attitudes showed that drug effectiveness and perceived distress from adverse drug reactions were the 2 most significant factors affecting patients? attitude toward antidepressants. Conclusions: Patients? self-report experiences of medications in online health care communities can provide a direct insight into the underlying factors associated with patients? perceptions and attitudes toward antidepressants. However, it cannot be used as a replacement for self-report methods because of the lack of information for some of the variables, colloquial language, and the unstructured format of the reports. UR - http://mental.jmir.org/2018/4/e10726/ UR - http://dx.doi.org/10.2196/10726 UR - http://www.ncbi.nlm.nih.gov/pubmed/30287417 ID - info:doi/10.2196/10726 ER - TY - JOUR AU - Gasteiger, Norina AU - Grainger, Rebecca AU - Day, Karen PY - 2018/10/03 TI - Arthritis-Related Support in a Social Media Group for Quilting Hobbyists: Qualitative Study JO - Interact J Med Res SP - e11026 VL - 7 IS - 2 KW - arthritis KW - social media KW - leisure KW - hobbies KW - peer group N2 - Background: People with arthritis are increasingly seeking support online, particularly for information about social role participation while experiencing symptoms of chronic arthritis. Social media enables peer-to-peer support on how serious leisure (eg, hobbies such as quilting) can be adapted to allow participation. Research is needed to understand what type of peer support is provided online and how this support occurs. Objective: The aim of our study was to explore what kind of support is offered by fellow hobbyists (with or without arthritis) in response to requests for advice in a social media group. Methods: Three vignettes were posted on a Facebook quilting group regarding arthritis-related symptoms or impairments that affect how people quilt. A Facebook Insights report was used to examine the groups? demographics. Responses to the vignettes were thematically analyzed. Results: The members of the quilting Facebook group were mostly women (18,376/18,478, 99.45%), aged 55 to 64 years, and most were located in the United States. In response to the vignettes, the 22 participants predominantly offered emotional support and shared information. Participants shared their real-life experiences and creative means in adapting medical advice to their crafting. More than half (30/54, 56%) of the advice that was offered aligned with the OrthoInfo medical best practice guidelines relevant to the vignettes. Conclusions: Serious leisure social media groups can be useful forums for sharing information about arthritis-related issues. People do respond to requests for support and information, although there is a difference between quilting support (eg, ?I need a new iron, what should I buy??) and health support (eg, ?I have arthritis, what scissors should I buy??). People provide emotional support for life events on serious leisure social media platforms (eg, offering condolences when a person states that she is making a memory quilt), and this extends to health issues when group members reveal them. UR - http://www.i-jmr.org/2018/2/e11026/ UR - http://dx.doi.org/10.2196/11026 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/11026 ER - TY - JOUR AU - Victoria Diniz, Marisa AU - Sun, Y. Sue AU - Barsottini, Claudia AU - Viggiano, Mauricio AU - Signorini Filho, C. Roney AU - Sanches Ozane Pimenta, Bruna AU - Elias, M. Kevin AU - Horowitz, S. Neil AU - Braga, Antonio AU - Berkowitz, S. Ross PY - 2018/9/24 TI - Experience With the Use of an Online Community on Facebook for Brazilian Patients With Gestational Trophoblastic Disease: Netnography Study JO - J Med Internet Res SP - e10897 VL - 20 IS - 9 KW - gestational trophoblastic disease KW - social media KW - Facebook KW - mobile phone N2 - Background: The term gestational trophoblastic disease (GTD) includes both complete and partial moles, which are uncommon nonviable pregnancies with the potential to evolve into a malignancy known as gestational trophoblastic neoplasia. While highly curable, the potential for malignancy associated with molar pregnancies worries the patients, leading them to seek information on the internet. A Facebook page headed by Brazilian specialized physicians in GTD was created in 2013 to provide online support for GTD patients. Objective: The objective of our study was to describe the netnography of Brazilian patients with GTD on Facebook (FBGTD) and to evaluate whether their experiences differed depending on whether they received care in a Brazilian gestational trophoblastic disease reference center (BRC) or elsewhere. Methods: This was a cross-sectional study using G Suite Google Platform. The members of FBGTD were invited to participate in a survey from March 6 to October 5, 2017, and a netnographic analysis of interactions among the members was performed. Results: The survey was answered by 356 Brazilian GTD patients: 176 reference center patients (RCP) treated at a BRC and 180 nonreference center patients (NRCP) treated elsewhere. On comparing the groups, we found that RCP felt safer and more confident at the time of diagnosis of GTD (P=.001). RCP were more likely to utilize FBGTD subsequent to a referral by health assistants (P<.001), whereas NRCP more commonly discovered FBGTD through Web searches (P<.001). NRCP had higher educational levels (P=.009) and were more commonly on FBGTD for ? 6 months (P=.03). NRCP were more likely to report that doctors did not adequately explain GTD at diagnosis (P=.007), had more doubts about GTD treatment (P=.01), and were less likely to use hormonal contraception (P<.001). Overall, 89% (317/356) patients accessed the internet preferentially from home and using mobile phones, and 98% (349/354) patients declared that they felt safe reading the recommendations posted by FBGTD physicians. Conclusions: This netnographic analysis of GTD patients on FBGTD shows that an Web-based doctor-patient relationship can supplement the care for women with GTD. This resource is particularly valuable for women being cared for outside of established reference centers. UR - http://www.jmir.org/2018/9/e10897/ UR - http://dx.doi.org/10.2196/10897 UR - http://www.ncbi.nlm.nih.gov/pubmed/30249575 ID - info:doi/10.2196/10897 ER - TY - JOUR AU - Crawford, Gemma AU - Maycock, Bruce AU - Tobin, Rochelle AU - Brown, Graham AU - Lobo, Roanna PY - 2018/09/05 TI - Prevention of HIV and Other Sexually Transmissible Infections in Expatriates and Traveler Networks: Qualitative Study of Peer Interaction in an Online Forum JO - J Med Internet Res SP - e10787 VL - 20 IS - 9 KW - HIV KW - STIs KW - men KW - public health KW - health promotion KW - online social networks KW - social support KW - travel KW - human migration KW - emigration and immigration KW - sexually transmitted diseases KW - social networking N2 - Background: In high-income countries such as Australia, an increasing proportion of HIV cases have been acquired overseas, including among expatriates and travelers. Australia?s national strategies have highlighted the need for public health interventions for priority populations. One approach is to expand efforts to places or spaces where expatriate communities reside. Online settings such as forums used by expatriates and travelers have potential for preventing sexually transmissible infections with those hard to reach through more traditional interventions. Objective: Our objectives were to (1) identify and describe domains of social interaction and engagement in 1 online forum used by Australian expatriates and travelers living or working in Thailand; and (2) make recommendations to health-promoting organizations and policy makers regarding the role of these forums in public health interventions with mobile populations who may be at risk of acquiring HIV or other sexually transmissible infections. Methods: We identified forums and users in 2 stages. We identified 13 online forums and analyzed them for inclusion criteria. We searched 1 forum that met the required criteria for users who met inclusion criteria (n=5). Discussion threads, rather than individual posts, were units of analysis. For each user, we collected as transcripts the first 100 posts and 10 most recent posts, including the thread in which they were posted. We analyzed and thematically coded each post (n=550). Transcripts and analyses were reviewed and refined by multiple members of the research team to improve rigor. Themes were not totally emergent but explored against symbolic interactionism concepts of presentation of self, meaning, and socialization. Results: Key domains were as follows: the forum (characteristics of the space and reasons for use), gaining access (forum hierarchy and rules), identity (presentation of self and role of language), advice, support, and information (sources of information, support provided, influencers, topics of discussion, and receptiveness to advice), and risk (expectations and perceptions). The forum exhibited evidence of unique language, rules and norms, and processes for managing conflict and key influencers. The forum was a substantial source of health information and advice provided to users via confirmation, reassurance, or affirmation of beliefs and experiences. Risk perception and expectations varied. Risk taking, including around sex, appeared to be a key expectation of travel or the experience of being an expatriate or traveler. Conclusions: Australian expatriate and long-term traveler participation in the online forum formed, influenced, and reinforced knowledge, attitudes, interaction, and identity. Such forums can be used by policy makers and health-promoting organizations to provide supplementary sources of support and information to hard-to-reach mobile populations who may be at risk of acquiring HIV or other sexually transmissible infections. This will complement existing engagement with health professionals and other public health interventions. UR - http://www.jmir.org/2018/9/e10787/ UR - http://dx.doi.org/10.2196/10787 UR - http://www.ncbi.nlm.nih.gov/pubmed/30185404 ID - info:doi/10.2196/10787 ER - TY - JOUR AU - Vaughan, Christine AU - Trail, E. Thomas AU - Mahmud, Ammarah AU - Dellva, Stephanie AU - Tanielian, Terri AU - Friedman, Esther PY - 2018/08/28 TI - Informal Caregivers? Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study JO - J Med Internet Res SP - e257 VL - 20 IS - 8 KW - caregivers KW - social support KW - social isolation KW - biomedical technology KW - military family N2 - Background: Web-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions. Objective: In this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans. Methods: This was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention. Results: Survey findings indicated that caregivers used the website infrequently, with 60.7% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network?s resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers. Conclusions: These findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers? needs for emotional support. UR - http://www.jmir.org/2018/8/e257/ UR - http://dx.doi.org/10.2196/jmir.9895 UR - http://www.ncbi.nlm.nih.gov/pubmed/30154074 ID - info:doi/10.2196/jmir.9895 ER - TY - JOUR AU - Gabarron, Elia AU - Årsand, Eirik AU - Wynn, Rolf PY - 2018/08/10 TI - Social Media Use in Interventions for Diabetes: Rapid Evidence-Based Review JO - J Med Internet Res SP - e10303 VL - 20 IS - 8 KW - social media KW - social networking KW - health promotion KW - intervention studies KW - diabetes N2 - Background: Health authorities recommend educating diabetic patients and their families and initiating measures aimed at improving self-management, promoting a positive behavior change, and reducing the risk of complications. Social media could provide valid channel to intervene in and deliver diabetes education. However, it is not well known whether the use of these channels in such interventions can help improve the patients? outcomes. Objective: The objective of our study was to review and describe the current existing evidence on the use of social media in interventions targeting people affected with diabetes. Methods: A search was conducted across 4 databases (PubMed, Scopus, EMBASE, and Cochrane Library).The quality of the evidence of the included primary studies was graded according to the Grading of Recommendations Assessment, Development and Evaluation criteria, and the risk of bias of systematic reviews was assessed by drawing on AMSTAR (A MeaSurement Tool to Assess systematic Reviews) guidelines. The outcomes reported by these studies were extracted and analyzed. Results: We included 20 moderate- and high-quality studies in the review: 17 primary studies and 3 systematic reviews. Of the 16 publications evaluating the effect on glycated hemoglobin (HbA1c) of the interventions using social media, 13 reported significant reductions in HbA1c values. The 5 studies that measured satisfaction with the interventions using social media found positive effects. We found mixed evidence regarding the effect of interventions using social media on health-related quality of life (2 publications found positive effects and 3 found no differences) and on diabetes knowledge or empowerment (2 studies reported improvements and 2 reported no significant changes). Conclusions: There is very little good-quality evidence on the use of social media in interventions aimed at helping people with diabetes. However, the use of these channels is mostly linked to benefits on patients? outcomes. Public health institutions, clinicians, and other stakeholders who aim at improving the knowledge of diabetic patients could consider the use of social media in their interventions. UR - http://www.jmir.org/2018/8/e10303/ UR - http://dx.doi.org/10.2196/10303 UR - http://www.ncbi.nlm.nih.gov/pubmed/30097421 ID - info:doi/10.2196/10303 ER - TY - JOUR AU - Myneni, Sahiti AU - Sridharan, Vishnupriya AU - Cobb, Nathan AU - Cohen, Trevor PY - 2018/07/24 TI - Content-Sensitive Characterization of Peer Interactions of Highly Engaged Users in an Online Community for Smoking Cessation: Mixed-Methods Approach for Modeling User Engagement in Health Promotion Interventions JO - J Participat Med SP - e9 VL - 10 IS - 3 KW - user engagement KW - smoking cessation KW - text analysis N2 - Background: Online communities provide affordable venues for behavior change. However, active user engagement holds the key to the success of these platforms. In order to enhance user engagement and in turn, health outcomes, it is essential to offer targeted interventional and informational support. Objective: In this paper, we describe a content plus frequency framework to enable the characterization of highly engaged users in online communities and study theoretical techniques employed by these users through analysis of exchanged communication. Methods: We applied the proposed methodology for analysis of peer interactions within QuitNet, an online community for smoking cessation. Firstly, we identified 144 highly engaged users based on communication frequency within QuitNet over a period of 16 years. Secondly, we used the taxonomy of behavior change techniques, text analysis methods from distributional semantics, machine learning, and sentiment analysis to assign theory-driven labels to content. Finally, we extracted content-specific insights from peer interactions (n=159,483 messages) among highly engaged QuitNet users. Results: Studying user engagement using our proposed framework led to the definition of 3 user categories?conversation initiators, conversation attractors, and frequent posters. Specific behavior change techniques employed by top tier users (threshold set at top 3) within these 3 user groups were found to be goal setting, social support, rewards and threat, and comparison of outcomes. Engagement-specific trends within sentiment manifestations were also identified. Conclusions: Use of content-inclusive analytics has offered deep insight into specific behavior change techniques employed by highly engaged users within QuitNet. Implications for personalization and active user engagement are discussed. UR - http://jopm.jmir.org/2018/3/e9/ UR - http://dx.doi.org/10.2196/jopm.9745 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jopm.9745 ER - TY - JOUR AU - Geramita, M. Emily AU - Herbeck Belnap, Bea AU - Abebe, Z. Kaleab AU - Rothenberger, D. Scott AU - Rotondi, J. Armando AU - Rollman, L. Bruce PY - 2018/07/17 TI - The Association Between Increased Levels of Patient Engagement With an Internet Support Group and Improved Mental Health Outcomes at 6-Month Follow-Up: Post-Hoc Analyses From a Randomized Controlled Trial JO - J Med Internet Res SP - e10402 VL - 20 IS - 7 KW - internet support group KW - patient engagement KW - anxiety KW - depression N2 - Background: We recently reported that depressed and anxious primary care patients randomized to a moderated internet support group (ISG) plus computerized cognitive behavioral therapy (cCBT) did not experience improvements in depression and anxiety over cCBT alone at 6-month follow-up. Objective: The 1% rule posits that 1% of participants in online communities generate approximately 90% of new user-created content. The aims of this study were to apply the 1% rule to categorize patient engagement with the ISG and identify whether any patient subgroups benefitted from ISG use. Methods: We categorized the 302 patients randomized to the ISG as: superusers (3/302, 1.0%), top contributors (30/302, 9.9%), contributors (108/302, 35.8%), observers (87/302, 28.8%) and those who never logged in (74/302, 24.5%). We then applied linear mixed models to examine associations between engagement and 6-month changes in health-related quality of life (HRQoL; Short Form Health Survey Mental Health Component, SF-12 MCS) and depression and anxiety symptoms (Patient-Reported Outcomes Measurement Information System, PROMIS). Results: At baseline, participant mean age was 42.6 years, 81.1% (245/302) were female, and mean Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder scale (GAD-7), and SF-12 MCS scores were 13.4, 12.6, and 31.7, respectively. Of the 75.5% (228/302) who logged in, 61.8 % (141/228) created ?1 post (median 1, interquartile range, IQR 0-5); superusers created 42.3 % (630/1488) of posts (median 246, IQR 78-306), top contributors created 34.6% (515/1488; median 11, IQR 10-18), and contributors created 23.1 % (343/1488; median 3, IQR 1-5). Compared to participants who never logged in, the combined superuser + top contributor subgroup (n=33) reported 6-month improvements in anxiety (PROMIS: ?11.6 vs ?7.8; P=.04) and HRQoL (SF-12 MCS: 16.1 vs 10.1; P=.01) but not in depression. No other subgroup reported significant symptom improvements. Conclusions: Patient engagement with the ISG was more broadly distributed than predicted by the 1% rule. The 11% of participants with the highest engagement levels reported significant improvements in anxiety and HRQoL. Trial Registration: ClinicalTrials.gov NCT01482806; https://clinicaltrials.gov/ct2/show/NCT01482806 (Archived by WebCite at http://www.webcitation.org/708Bjlge9). UR - http://www.jmir.org/2018/7/e10402/ UR - http://dx.doi.org/10.2196/10402 UR - http://www.ncbi.nlm.nih.gov/pubmed/30021711 ID - info:doi/10.2196/10402 ER - TY - JOUR AU - Hartnup, Becky AU - Dong, Lin AU - Eisingerich, Benedikt Andreas PY - 2018/07/13 TI - How an Environment of Stress and Social Risk Shapes Student Engagement With Social Media as Potential Digital Learning Platforms: Qualitative Study JO - JMIR Med Educ SP - e10069 VL - 4 IS - 2 KW - social media KW - online learning KW - digital engagement KW - stress KW - social risk KW - digital platforms KW - education KW - university adjustment N2 - Background: Social media has been increasingly used as a learning tool in medical education. Specifically, when joining university, students often go through a phase of adjustment, and they need to cope with various challenges such as leaving their families and friends and trying to fit into a new environment. Research has shown that social media helps students to connect with old friends and to establish new relationships. However, managing friendships on social media might intertwine with the new learning environment that shapes students? online behaviors. Especially, when students perceive high levels of social risks when using social media, they may struggle to take advantage of the benefits that social media can provide for learning. Objective: This study aimed to develop a model that explores the drivers and inhibitors of student engagement with social media during their university adjustment phase. Methods: We used a qualitative method by interviewing 78 undergraduate students studying medical courses at UK research-focused universities. In addition, we interviewed 6 digital technology experts to provide additional insights into students? learning behaviors on social media. Results: Students? changing relationships and new academic environment in the university adjustment phase led to various factors that affected their social media engagement. The main drivers of social media engagement were maintaining existing relationships, building new relationships, and seeking academic support. Simultaneously, critical factors that inhibited the use of social media for learning emerged, namely, collapsed online identity, uncertain group norms, the desire to present an ideal self, and academic competition. These inhibitors led to student stress when managing their social media accounts, discouraged them from actively engaging on social media, and prevented the full exploitation of social media as an effective learning tool. Conclusions: This study identified important drivers and inhibitors for students to engage with social media platforms as learning tools. Although social media supported students to manage their relationships and support their learning, the interaction of critical factors, such as collapsed online identity, uncertain group norms, the desire to present an ideal self, and academic competition, caused psychological stress and impeded student engagement. Future research should explore how these inhibitors can be removed to reduce students? stress and to increase the use of social media for learning. More specifically, such insights will allow students to take full advantage of being connected, thus facilitating a richer learning experience during their university life. UR - http://mededu.jmir.org/2018/2/e10069/ UR - http://dx.doi.org/10.2196/10069 UR - http://www.ncbi.nlm.nih.gov/pubmed/30006324 ID - info:doi/10.2196/10069 ER - TY - JOUR AU - Schuster, Raphael AU - Sigl, Sophia AU - Berger, Thomas AU - Laireiter, Anton-Rupert PY - 2018/07/11 TI - Patients? Experiences of Web- and Mobile-Assisted Group Therapy for Depression and Implications of the Group Setting: Qualitative Follow-Up Study JO - JMIR Ment Health SP - e49 VL - 5 IS - 3 KW - internet KW - computer-assisted therapy KW - smartphone-assisted therapy KW - blended therapy KW - cognitive behavioral therapy KW - depression KW - therapeutic process KW - working alliance N2 - Background: Blended group therapy combines group sessions with Web- and mobile-based treatment modules. Consequently, blended group therapy widens the choice within blended interventions at reasonable costs. This is the first qualitative study on blended group therapy. Objective: The objective of this study was to investigate the patient-centered feasibility of blended group therapy for major depression, with special emphasis on the fit and dynamic interplay between face-to-face and internet-based elements. Methods: A total of 22 patients who had a variety of experiences through participating in one of the two blended group therapy interventions were interviewed following a semistructured interview guide. In-depth interviews were analyzed by three trained psychologists, using thematic analysis and a rule-guided internet-based program (QCAmap). The transcript of the interviews (113,555 words) was reduced to 1081 coded units, with subsequent extraction of 16 themes. Results: Web- and mobile-based elements were described as a treatment facilitator and motivator, increasing the salience and consolidation of cognitive behavioral therapy materials, resulting in in- and inter-session alignment to the treatment. Additionally, patients valued the option of intimate Web-based self-disclosure (by lateral patient-therapist communication), and therapists were provided with tools for between-session monitoring and reinforcement of exercising. In this context, group phenomena seemed to back up therapists? efforts to increase treatment engagement. The dissonance because of noncompliance with Web-based tasks and the constriction of in-session group interaction were considered as possible negative effects. Finally, issues of tailoring and structure seemed to fulfill different preconditions compared with individual therapy. Conclusions: Blended group therapy constitutes a structured and proactive approach to work with depression, and the integration of both modalities initiates a beneficial interplay. Results support the patient-centered value of blended group therapy and provide the first insight into blended group therapy?s role in fostering therapeutic treatment factors. However, potential negative effects should be considered carefully. UR - http://mental.jmir.org/2018/3/e49/ UR - http://dx.doi.org/10.2196/mental.9613 UR - http://www.ncbi.nlm.nih.gov/pubmed/29997106 ID - info:doi/10.2196/mental.9613 ER - TY - JOUR AU - Joglekar, Sagar AU - Sastry, Nishanth AU - Coulson, S. Neil AU - Taylor, JC Stephanie AU - Patel, Anita AU - Duschinsky, Robbie AU - Anand, Amrutha AU - Jameson Evans, Matt AU - Griffiths, J. Chris AU - Sheikh, Aziz AU - Panzarasa, Pietro AU - De Simoni, Anna PY - 2018/07/11 TI - How Online Communities of People With Long-Term Conditions Function and Evolve: Network Analysis of the Structure and Dynamics of the Asthma UK and British Lung Foundation Online Communities JO - J Med Internet Res SP - e238 VL - 20 IS - 7 KW - asthma KW - chronic obstructive pulmonary disease KW - COPD KW - network analysis KW - online community KW - online forums KW - superusers KW - self-management KW - digital health social network N2 - Background: Self-management support can improve health and reduce health care utilization by people with long-term conditions. Online communities for people with long-term conditions have the potential to influence health, usage of health care resources, and facilitate illness self-management. Only recently, however, has evidence been reported on how such communities function and evolve, and how they support self-management of long-term conditions in practice. Objective: The aim of this study is to gain a better understanding of the mechanisms underlying online self-management support systems by analyzing the structure and dynamics of the networks connecting users who write posts over time. Methods: We conducted a longitudinal network analysis of anonymized data from 2 patients? online communities from the United Kingdom: the Asthma UK and the British Lung Foundation (BLF) communities in 2006-2016 and 2012-2016, respectively. Results: The number of users and activity grew steadily over time, reaching 3345 users and 32,780 posts in the Asthma UK community, and 19,837 users and 875,151 posts in the BLF community. People who wrote posts in the Asthma UK forum tended to write at an interval of 1-20 days and six months, while those in the BLF community wrote at an interval of two days. In both communities, most pairs of users could reach one another either directly or indirectly through other users. Those who wrote a disproportionally large number of posts (the superusers) represented 1% of the overall population of both Asthma UK and BLF communities and accounted for 32% and 49% of the posts, respectively. Sensitivity analysis showed that the removal of superusers would cause the communities to collapse. Thus, interactions were held together by very few superusers, who posted frequently and regularly, 65% of them at least every 1.7 days in the BLF community and 70% every 3.1 days in the Asthma UK community. Their posting activity indirectly facilitated tie formation between other users. Superusers were a constantly available resource, with a mean of 80 and 20 superusers active at any one time in the BLF and Asthma UK communities, respectively. Over time, the more active users became, the more likely they were to reply to other users? posts rather than to write new ones, shifting from a help-seeking to a help-giving role. This might suggest that superusers were more likely to provide than to seek advice. Conclusions: In this study, we uncover key structural properties related to the way users interact and sustain online health communities. Superusers? engagement plays a fundamental sustaining role and deserves research attention. Further studies are needed to explore network determinants of the effectiveness of online engagement concerning health-related outcomes. In resource-constrained health care systems, scaling up online communities may offer a potentially accessible, wide-reaching and cost-effective intervention facilitating greater levels of self-management. UR - http://www.jmir.org/2018/7/e238/ UR - http://dx.doi.org/10.2196/jmir.9952 UR - http://www.ncbi.nlm.nih.gov/pubmed/29997105 ID - info:doi/10.2196/jmir.9952 ER - TY - JOUR AU - Breakey, R. Vicky AU - Bouskill, Vanessa AU - Nguyen, Cynthia AU - Luca, Stephanie AU - Stinson, N. Jennifer AU - Ahola Kohut, Sara PY - 2018/07/10 TI - Online Peer-to-Peer Mentoring Support for Youth with Hemophilia: Qualitative Needs Assessment JO - JMIR Pediatr Parent SP - e10958 VL - 1 IS - 2 KW - hemophilia KW - adolescents KW - transition KW - self-management KW - education KW - internet KW - mentoring N2 - Background: To support adolescents through transition from pediatrics to adult care, health care providers and families help teens gain knowledge and develop self-management skills. Peer mentoring can provide meaningful support and has been associated with improved health outcomes in patients with other chronic conditions. Peer mentoring is an appealing way to provide support, but it is imperative to consider the unique needs of adolescents to ensure its success. Objective: The objective of our study was to identify the peer mentoring wants and needs of youth with hemophilia in order to guide the development of a new program. Methods: In this qualitative study, we interviewed a convenience sample of youth with hemophilia from 2 Canadian hemophilia treatment centers. Two iterative cycles of audiorecorded, semistructured individual interviews were conducted. Descriptive statistics and content analyses were used to organize data into categories that reflected emerging themes. Results: In total, we recruited 23 participants aged 12-20 years, with a mean age of 14.91 (2.57) years. When asked about program design, participants weighed the importance of flexibility in delivery (eg, Web-based, in person, text messaging [short message service]), content (eg, structured vs unstructured), frequency of sessions, and length of the program. Participants identified some potential challenges such as scheduling issues, comfort level for disease discussion, and discordant mentor-mentee personality types. The program was viewed as a positive medium for connecting peers with hemophilia. Conclusions: Adolescents with hemophilia expressed interest in a peer mentoring program and provided valuable insight that will be applied in the development of a peer mentoring program for youth with hemophilia. UR - http://pediatrics.jmir.org/2018/2/e10958/ UR - http://dx.doi.org/10.2196/10958 UR - http://www.ncbi.nlm.nih.gov/pubmed/31518296 ID - info:doi/10.2196/10958 ER - TY - JOUR AU - Lewis, Amir Jakeem AU - Gee, M. Perry AU - Ho, Lynn Chia-Ling AU - Miller, Soederberg Lisa M. PY - 2018/06/28 TI - Understanding Why Older Adults With Type 2 Diabetes Join Diabetes Online Communities: Semantic Network Analyses JO - JMIR Aging SP - e10649 VL - 1 IS - 1 KW - online community KW - diabetes KW - health information KW - health support KW - chronic health difficulty KW - self-management KW - social support N2 - Background: As individuals age, chronic health difficulties may disrupt physical and social well-being. Individuals can turn to online communities to interact with similar peers, which may help buffer negative effects resulting from health difficulties. Objective: This study investigated the reasons that older adults join a diabetes online community to better understand the specific resources that are being sought. Methods: We used semantic network analyses to categorize the reasons participants provided for joining a community during the sign-up process. Results: The most frequent reasons for joining were to seek information about their health condition, to help with self-management of health difficulties, for feelings of informational and social support, and for having a community with whom to share. Women were more likely to go online for sharing and companionship as well as for information and social support reasons, whereas men were more likely to go online for general information and self-management reasons. Conclusions: This study shows the reasons older adults seek to join a diabetes online community: for increased information and support regarding chronic health difficulties. Practitioners may want to consider ways to promote access to online communities among their older patients as a source of health information and a resource to provide a sense of community. UR - http://aging.jmir.org/2018/1/e10649/ UR - http://dx.doi.org/10.2196/10649 UR - http://www.ncbi.nlm.nih.gov/pubmed/31518243 ID - info:doi/10.2196/10649 ER - TY - JOUR AU - Alada?, Emre Ahmet AU - Muderrisoglu, Serra AU - Akbas, Berfu Naz AU - Zahmacioglu, Oguzhan AU - Bingol, O. Haluk PY - 2018/06/21 TI - Detecting Suicidal Ideation on Forums: Proof-of-Concept Study JO - J Med Internet Res SP - e215 VL - 20 IS - 6 KW - suicide KW - suicidal ideation KW - suicidality KW - detection KW - prevention KW - classification model KW - text mining KW - machine learning KW - artificial intelligence KW - suicidal surveillance N2 - Background: In 2016, 44,965 people in the United States died by suicide. It is common to see people with suicidal ideation seek help or leave suicide notes on social media before attempting suicide. Many prefer to express their feelings with longer passages on forums such as Reddit and blogs. Because these expressive posts follow regular language patterns, potential suicide attempts can be prevented by detecting suicidal posts as they are written. Objective: This study aims to build a classifier that differentiates suicidal and nonsuicidal forum posts via text mining methods applied on post titles and bodies. Methods: A total of 508,398 Reddit posts longer than 100 characters and posted between 2008 and 2016 on SuicideWatch, Depression, Anxiety, and ShowerThoughts subreddits were downloaded from the publicly available Reddit dataset. Of these, 10,785 posts were randomly selected and 785 were manually annotated as suicidal or nonsuicidal. Features were extracted using term frequency-inverse document frequency, linguistic inquiry and word count, and sentiment analysis on post titles and bodies. Logistic regression, random forest, and support vector machine (SVM) classification algorithms were applied on resulting corpus and prediction performance is evaluated. Results: The logistic regression and SVM classifiers correctly identified suicidality of posts with 80% to 92% accuracy and F1 score, respectively, depending on different data compositions closely followed by random forest, compared to baseline ZeroR algorithm achieving 50% accuracy and 66% F1 score. Conclusions: This study demonstrated that it is possible to detect people with suicidal ideation on online forums with high accuracy. The logistic regression classifier in this study can potentially be embedded on blogs and forums to make the decision to offer real-time online counseling in case a suicidal post is being written. UR - http://www.jmir.org/2018/6/e215/ UR - http://dx.doi.org/10.2196/jmir.9840 UR - http://www.ncbi.nlm.nih.gov/pubmed/29929945 ID - info:doi/10.2196/jmir.9840 ER - TY - JOUR AU - Hargreaves, Sarah AU - Bath, A. Peter AU - Duffin, Suzanne AU - Ellis, Julie PY - 2018/06/14 TI - Sharing and Empathy in Digital Spaces: Qualitative Study of Online Health Forums for Breast Cancer and Motor Neuron Disease (Amyotrophic Lateral Sclerosis) JO - J Med Internet Res SP - e222 VL - 20 IS - 6 KW - online health forum KW - sharing KW - breast cancer KW - motor neuron disease KW - amyotrophic lateral sclerosis KW - empathy N2 - Background: The availability of an increasing number of online health forums has altered the experience of living with a health condition, as more people are now able to connect and support one another. Empathy is an important component of peer-to-peer support, although little is known about how empathy develops and operates within online health forums. Objective: The aim of this paper is to explore how empathy develops and operates within two online health forums for differing health conditions: breast cancer and motor neuron disease (MND), also known as amyotrophic lateral sclerosis. Methods: This qualitative study analyzed data from two sources: interviews with forum users and downloaded forum posts. Data were collected from two online health forums provided by UK charities: Breast Cancer Care and the Motor Neurone Disease Association. We analyzed 84 threads from the breast cancer forum and 52 from the MND forum. Threads were purposively sampled to reflect varied experiences (eg, illness stages, topics of conversation, and user characteristics). Semistructured interviews were conducted with 14 Breast Cancer Care forum users and five users of the MND forum. All datasets were analyzed thematically using Braun and Clarke?s six-phase approach and combined to triangulate the analysis. Results: We found that empathy develops and operates through shared experiences and connections. The development of empathy begins outside the forum with experiences of illness onset and diagnosis, creating emotional and informational needs. Users came to the forum and found their experiences and needs were shared and understood by others, setting the empathetic tone and supportive ethos of the forum. The forum was viewed as both a useful and meaningful space in which they could share experiences, information, and emotions, and receive empathetic support within a supportive and warm atmosphere. Empathy operated through connections formed within this humane space based on similarity, relationships, and shared feelings. Users felt a need to connect to users who they felt were like themselves (eg, people sharing the same specific diagnosis). They formed relationships with other users. They connected based on the emotional understanding of ill health. Within these connections, empathic communication flourished. Conclusions: Empathy develops and operates within shared experiences and connections, enabled by structural possibilities provided by the forums giving users the opportunity and means to interact within public, restricted, and more private spaces, as well as within groups and in one-to-one exchanges. The atmosphere and feeling of both sites and perceived audiences were important facilitators of empathy, with users sharing a perception of virtual communities of caring and supportive people. Our findings are of value to organizations hosting health forums and to health professionals signposting patients to additional sources of support. UR - http://www.jmir.org/2018/6/e222/ UR - http://dx.doi.org/10.2196/jmir.9709 UR - http://www.ncbi.nlm.nih.gov/pubmed/29903695 ID - info:doi/10.2196/jmir.9709 ER - TY - JOUR AU - Kornfield, Rachel AU - Sarma, K. Prathusha AU - Shah, V. Dhavan AU - McTavish, Fiona AU - Landucci, Gina AU - Pe-Romashko, Klaren AU - Gustafson, H. David PY - 2018/06/12 TI - Detecting Recovery Problems Just in Time: Application of Automated Linguistic Analysis and Supervised Machine Learning to an Online Substance Abuse Forum JO - J Med Internet Res SP - e10136 VL - 20 IS - 6 KW - self-help groups KW - substance-related disorders KW - supervised machine learning KW - social support KW - health communication N2 - Background: Online discussion forums allow those in addiction recovery to seek help through text-based messages, including when facing triggers to drink or use drugs. Trained staff (or ?moderators?) may participate within these forums to offer guidance and support when participants are struggling but must expend considerable effort to continually review new content. Demands on moderators limit the scalability of evidence-based digital health interventions. Objective: Automated identification of recovery problems could allow moderators to engage in more timely and efficient ways with participants who are struggling. This paper aimed to investigate whether computational linguistics and supervised machine learning can be applied to successfully flag, in real time, those discussion forum messages that moderators find most concerning. Methods: Training data came from a trial of a mobile phone-based health intervention for individuals in recovery from alcohol use disorder, with human coders labeling discussion forum messages according to whether or not authors mentioned problems in their recovery process. Linguistic features of these messages were extracted via several computational techniques: (1) a Bag-of-Words approach, (2) the dictionary-based Linguistic Inquiry and Word Count program, and (3) a hybrid approach combining the most important features from both Bag-of-Words and Linguistic Inquiry and Word Count. These features were applied within binary classifiers leveraging several methods of supervised machine learning: support vector machines, decision trees, and boosted decision trees. Classifiers were evaluated in data from a later deployment of the recovery support intervention. Results: To distinguish recovery problem disclosures, the Bag-of-Words approach relied on domain-specific language, including words explicitly linked to substance use and mental health (?drink,? ?relapse,? ?depression,? and so on), whereas the Linguistic Inquiry and Word Count approach relied on language characteristics such as tone, affect, insight, and presence of quantifiers and time references, as well as pronouns. A boosted decision tree classifier, utilizing features from both Bag-of-Words and Linguistic Inquiry and Word Count performed best in identifying problems disclosed within the discussion forum, achieving 88% sensitivity and 82% specificity in a separate cohort of patients in recovery. Conclusions: Differences in language use can distinguish messages disclosing recovery problems from other message types. Incorporating machine learning models based on language use allows real-time flagging of concerning content such that trained staff may engage more efficiently and focus their attention on time-sensitive issues. UR - http://www.jmir.org/2018/6/e10136/ UR - http://dx.doi.org/10.2196/10136 UR - http://www.ncbi.nlm.nih.gov/pubmed/29895517 ID - info:doi/10.2196/10136 ER - TY - JOUR AU - Tanaka, Rika AU - Banerjee, Anita AU - Surikova, Jelena AU - Tracey, Jacqueline AU - Payne, Ada AU - Ross, Heather AU - Nolan, Robert PY - 2018/05/18 TI - A Moderated e-Forum for Adults With Cardiovascular Disease: Usability Study JO - JMIR Hum Factors SP - e20 VL - 5 IS - 2 KW - support groups KW - cardiovascular disease KW - qualitative research N2 - Background: Self-care behaviors are commonly prescribed to manage both cardiovascular disease and hypertension to reduce modifiable risk factors and improve quality of life. Nevertheless, long-term adherence to self-care recommendations for cardiac patients has been problematic. In cardiac patients, moderated online forums have been found to be particularly useful in supporting maintenance of heart-healthy diet and fewer hospital visits. As such, we developed the e-Forum, a Web-based moderated forum designed to promote continued user engagement and long-term self-care adherence. Objective: The objective of this study was to assess the usability of the user interface for the newly designed e-Forum. In addition to overall user satisfaction, we obtained feedback from our target users on the key features of this newly developed interface. Methods: An iterative design tested the usability of the e-Forum. On the basis of the user feedback, adjustments were made to the design of our e-Forum, and these changes were then tested in the succeeding group. Participants were recruited from the Heart Function Clinic at the Peter Munk Cardiac Center, University Health Network. After consenting to participate in our study, patients were asked to complete a set of goal-oriented tasks and a feedback interview for the e-Forum. A content analysis of the transcripts from the set of goal-oriented tasks and feedback interviews identified several themes, including general feedback and comments regarding 3 key areas of the e-Forum: layout, navigation, and content. Results: Overall, 13 cardiac patients (aged 32-81 years) participated in 3 rounds of testing. Participants across all 3 rounds were highly satisfied with our e-Forum and indicated that they would find such a forum useful in managing their health. Expressions of overall satisfaction with the e-Forum and positive comments regarding layout increased between the initial and the final round. As improvements were made to the e-Forum based on participant feedback, potential barriers, negative comments related to the content, and the number of navigation errors decreased between rounds 1 and 3. Conclusions: We found evidence to support the usability of the user interface for our e-Forum. These results indicate that the e-Forum will likely be a successful tool to support an online community of cardiac patients in their efforts to sustain long-term lifestyle behavior change. UR - http://humanfactors.jmir.org/2018/2/e20/ UR - http://dx.doi.org/10.2196/humanfactors.8820 UR - http://www.ncbi.nlm.nih.gov/pubmed/29776901 ID - info:doi/10.2196/humanfactors.8820 ER - TY - JOUR AU - Kirkman, Louise Jessica Jane AU - Leo, Briony AU - Moore, Christopher Jamie PY - 2018/5/17 TI - Alcohol Consumption Reduction Among a Web-Based Supportive Community Using the Hello Sunday Morning Blog Platform: Observational Study JO - J Med Internet Res SP - e196 VL - 20 IS - 5 KW - alcohol drinking KW - internet KW - Web-based brief alcohol intervention KW - moderate drinking KW - alcohol use KW - alcohol abuse KW - binge drinking KW - internet intervention KW - relapse prevention KW - drinking behavior KW - alcoholic intoxication KW - social network KW - blogging KW - blog search KW - internet media KW - platforms KW - community KW - engagement N2 - Background: Alcohol misuse is a major social and public health issue in Australia, with an estimated cost to the community of Aus $30 billion per annum. Until recently, a major barrier in addressing this significant public health issue is the fact that the majority of individuals with alcohol use disorders and alcohol misuse are not receiving treatment. Objective: This study aimed to assess whether alcohol consumption changes are associated with participation in Hello Sunday Morning?s blog platform, an online forum discussing experiences in abstaining from alcohol. Methods: The study reports on Hello Sunday Morning participants who signed up for a 3-month period of abstinence from November 2009 to November 2016. The sample comprised 1917 participants (female: 1227/1917, 64.01%; male: 690/1917, 35.99%). Main outcome measures were Alcohol Use Disorders Identification Test (AUDIT) scores, mood, program engagement metrics, and slip-ups. Results: Individuals who reported hazardous (preprogram AUDIT mean 11.92, SD 2.25) and harmful consumption levels (preprogram AUDIT mean 17.52, SD 1.08) and who engaged in the Hello Sunday Morning program reported a significant decrease in alcohol consumption, moving to lower risk consumption levels (hazardous, mean 7.59, SD 5.70 and harmful, mean 10.38, SD 7.43), 4 months following program commencement (P<.001). Those who reported high-risk or dependent consumption levels experienced the biggest reduction (preprogram mean 25.38, SD 4.20), moving to risky consumption (mean 15.83, SD 11.11), 4 months following program commencement (P<.001). These reductions in risk were maintained by participants in each group, 7 months following program commencement. Furthermore, those who engaged in the program more (as defined by more sign-ins, blogs posted, check-ins completed, and engagement with the community through likes and following) had lower alcohol consumption. Finally, those who experienced more slip-ups had lower alcohol consumption. Conclusions: Participation in an online forum can support long-term behavior change in individuals wishing to change their drinking behavior. Importantly, reductions in AUDIT scores appeared larger for those drinking at high-risk and hazardous levels before program commencement. This has promising implications for future models of alcohol reduction treatment, as online forums are an anonymous, accessible, and cost-effective alternative or adjunct to treatment-as-usual. Further research is needed into the specific mechanisms of change within a Web-based supportive community, as well as the role of specific mood states in predicting risky drinking behavior. UR - http://www.jmir.org/2018/5/e196/ UR - http://dx.doi.org/10.2196/jmir.9605 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jmir.9605 ER - TY - JOUR AU - Maganty, Nishita AU - Ilyas, Muneeb AU - Ginsberg, Zachary AU - Sharma, Amit PY - 2018/05/16 TI - Social Media as a Platform for Information and Support for Melanoma Patients: Analysis of Melanoma Facebook Groups and Pages JO - JMIR Dermatol SP - e2 VL - 1 IS - 1 KW - Facebook KW - melanoma KW - online health information KW - patient education KW - support KW - health promotion N2 - Background: Social media is increasingly used as a source of health information and is useful for information exchange and patient support. Objective: The aim of this study is to describe the Facebook groups and pages that are available for melanoma patients. Methods: A systematic search of Facebook groups and pages was performed using the word ?melanoma.? The first 50 pages found in the search, sorted by most relevant, were analyzed for several characteristics, namely page name, category, verification status, number of likes, number of followers, visitor posts per week, page posts per week, ability to donate, date of inception, and for-profit or nonprofit. The first 50 groups found in the search, sorted by most relevant, were analyzed for name, category, number of members, and privacy setting. Results: There were 669 pages and 568 groups related to melanoma found on Facebook. The first 50 pages had a combined total of 266,709 likes and 257,183 followers and, of these, 30% (15/50) were verified by Facebook. Within the analyzed Facebook pages, the average number of visitor posts per week was 0.48, the average number of posts by the page per week was 5.6, and the most common page categories were community and nonprofit. Of the 50 groups analyzed, 18 were public and 32 were private (closed). The total number of combined group members in all 50 groups was found to be 23,047 and 52% (26/50) of the groups were categorized as support. Conclusions: Melanoma pages and groups on Facebook reach a large portion of the population. To provide resources for the population of patients diagnosed with malignant melanoma and ensure that proper information is distributed, physicians and health care organizations may consider using Facebook as a platform to support and educate patients with melanoma. UR - https://derma.jmir.org/2018/1/e2/ UR - http://dx.doi.org/10.2196/derma.8482 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/derma.8482 ER - TY - JOUR AU - McRoy, Susan AU - Rastegar-Mojarad, Majid AU - Wang, Yanshan AU - Ruddy, J. Kathryn AU - Haddad, C. Tufia AU - Liu, Hongfang PY - 2018/05/15 TI - Assessing Unmet Information Needs of Breast Cancer Survivors: Exploratory Study of Online Health Forums Using Text Classification and Retrieval JO - JMIR Cancer SP - e10 VL - 4 IS - 1 KW - online health forum KW - automated content analysis KW - text retrieval KW - text classification N2 - Background: Patient education materials given to breast cancer survivors may not be a good fit for their information needs. Needs may change over time, be forgotten, or be misreported, for a variety of reasons. An automated content analysis of survivors' postings to online health forums can identify expressed information needs over a span of time and be repeated regularly at low cost. Identifying these unmet needs can guide improvements to existing education materials and the creation of new resources. Objective: The primary goals of this project are to assess the unmet information needs of breast cancer survivors from their own perspectives and to identify gaps between information needs and current education materials. Methods: This approach employs computational methods for content modeling and supervised text classification to data from online health forums to identify explicit and implicit requests for health-related information. Potential gaps between needs and education materials are identified using techniques from information retrieval. Results: We provide a new taxonomy for the classification of sentences in online health forum data. 260 postings from two online health forums were selected, yielding 4179 sentences for coding. After annotation of data and training alternative one-versus-others classifiers, a random forest-based approach achieved F1 scores from 66% (Other, dataset2) to 90% (Medical, dataset1) on the primary information types. 136 expressions of need were used to generate queries to indexed education materials. Upon examination of the best two pages retrieved for each query, 12% (17/136) of queries were found to have relevant content by all coders, and 33% (45/136) were judged to have relevant content by at least one. Conclusions: Text from online health forums can be analyzed effectively using automated methods. Our analysis confirms that breast cancer survivors have many information needs that are not covered by the written documents they typically receive, as our results suggest that at most a third of breast cancer survivors? questions would be addressed by the materials currently provided to them. UR - http://cancer.jmir.org/2018/1/e10/ UR - http://dx.doi.org/10.2196/cancer.9050 UR - http://www.ncbi.nlm.nih.gov/pubmed/29764801 ID - info:doi/10.2196/cancer.9050 ER - TY - JOUR AU - Wray, Jo AU - Brown, Katherine AU - Tregay, Jenifer AU - Crowe, Sonya AU - Knowles, Rachel AU - Bull, Kate AU - Gibson, Faith PY - 2018/05/09 TI - Parents? Experiences of Caring for Their Child at the Time of Discharge After Cardiac Surgery and During the Postdischarge Period: Qualitative Study Using an Online Forum JO - J Med Internet Res SP - e155 VL - 20 IS - 5 KW - congenital heart disease KW - parents KW - online forum KW - isolation N2 - Background: Congenital heart disease (CHD) is the most common class of birth defects, which encompasses a broad spectrum of severity ranging from relatively minor to extremely complex. Improvements in surgery and intensive care have resulted in an increasing number of infants with the most complex lesions surviving after surgery until the time of discharge from the hospital, but there remain concerns about out-of-hospital mortality, variability in how services are provided at the time of discharge and beyond, and difficulties experienced by some families in accessing care. Objective: As part of a mixed-methods program of research, this study aimed to elicit parental experiences of caring for a child with CHD after hospital discharge following a cardiac surgery and collect information to inform interviews for a subsequent stage of the project. Methods: A closed online discussion group was set up via the main Facebook page of the Children?s Heart Federation (CHF), a national charity offering support to children with heart disease and their families. The discussion group was advertised through the charity?s webpage, and interested participants were directed to the charity?s Facebook page from where they could access the closed Facebook group and respond to questions posted. The CHF moderated the forum, and the research team provided questions to be posted on the forum. Responses were collated into a single transcript and subjected to thematic analysis. Results: The forum was open for 4 months, and 91 participants (mean age 35 years, range 23-58 years, 89 females, 89 parents, and 2 grandparents) submitted demographic information and were given access to the closed forum group. A common experience of isolation emerged from the data, with descriptions of how that isolation was experienced (physical, social, knowledge) and its psychological impact, together with the factors that made it worse or better. Woven through this theme was the notion that parents developed expertise over time. Conclusions: The use of an online forum provided a means for eliciting data from a large number of parents regarding their experiences of caring for their child after hospital discharge following cardiac surgery. Parents engaged with the forum and were able to articulate what went well and what went less well, together with sharing their stories and supporting each other through doing so. Some parents clearly found participating in the forum a positive experience in itself, demonstrating the potential of social media as a mechanism for providing support and reducing isolation. Information gained from the forum was used to shape questions for interviews with parents in a subsequent phase of the study. Furthermore, the themes identified in the online forum have contributed to identifying ways of improving the provision of care and support for parents of high-risk babies following discharge after cardiac surgery. UR - http://www.jmir.org/2018/5/e155/ UR - http://dx.doi.org/10.2196/jmir.9104 UR - http://www.ncbi.nlm.nih.gov/pubmed/29743157 ID - info:doi/10.2196/jmir.9104 ER - TY - JOUR AU - Wicks, Paul AU - Mack Thorley, Eileen AU - Simacek, Kristina AU - Curran, Christopher AU - Emmas, Cathy PY - 2018/05/07 TI - Scaling PatientsLikeMe via a ?Generalized Platform? for Members with Chronic Illness: Web-Based Survey Study of Benefits Arising JO - J Med Internet Res SP - e175 VL - 20 IS - 5 KW - personal health records KW - personal monitoring KW - technology KW - health care KW - self-help devices KW - personal tracking KW - social support KW - online support group KW - online health community N2 - Background: Launched in 2006 for patients with amyotrophic lateral sclerosis, PatientsLikeMe is an online community offering patient-reported outcomes, symptom tracking, and social features. Every member of the site can see all the data reported by every other member, view aggregated reports, identify ?patients like them,? and learn about treatment options in order to live better with their condition. In previous studies, members reported benefits such as improved condition knowledge, increased medication adherence, and better management of side effects. However, the site evolved in 2011 from condition-specific ?vertical? communities consisting only of people with the same disease to a ?generalized platform,? in which every patient could connect with every other patient regardless of condition and with generic, rather than condition-specific, data tools. Some, but not all, communities received further custom tracking tools. Objective: We aimed to understand (1) whether members of PatientsLikeMe using the generalized platform still reported similar benefits and (2) assess factors associated with benefits, such as community customization, site use, and patient activation. Methods: A cross-sectional retrospective custom survey was fielded to 377,625 members between 2016 and 2017 including the Patient Activation Measure (PAM). A benefit index was developed for comparability across conditions. Results: The invitation was viewed by 26,048 members of whom 11,915 did not respond, 5091 opted out, 1591 provided partial data, and 17 were screened out. Complete responses were received from 7434 participants. Users perceived greatest benefit in understanding how their condition may affect them (4530/6770, 66.91% participants, excluding ?does not apply? answers), understanding what might help them live better with their condition (4247/6750, 62.92%), which treatments were available (4143/6898, 60.06%), understanding treatment side effects (4182/6902, 60.59%), and important factors in making treatment decisions (3919/6813, 57.52%). The benefit index was 29% higher for the ?most activated? patients (PAM level 4 vs PAM level 1; relative risk [RR]=1.29, P<.001), 21% higher for conditions with some community customization versus none (RR=1.21, P<.001), and 11% higher in those using the site most often versus least (RR=1.11, P<.001). Conclusions: Members of the generalized platform reported a range of benefits related to improved knowledge and understanding of their condition and treatment management. Condition-specific customization may improve their experience still further. Future studies will explore longitudinal changes to patient activation. UR - http://www.jmir.org/2018/5/e175/ UR - http://dx.doi.org/10.2196/jmir.9909 UR - http://www.ncbi.nlm.nih.gov/pubmed/29735472 ID - info:doi/10.2196/jmir.9909 ER - TY - JOUR AU - McKenna, A. Rebecca AU - Rollo, E. Megan AU - Skinner, A. Janelle AU - Burrows, L. Tracy PY - 2018/04/24 TI - Food Addiction Support: Website Content Analysis JO - JMIR Cardio SP - e10 VL - 2 IS - 1 KW - food addiction KW - self-help groups KW - social support N2 - Background: Food addiction has a long history; however, there has been a substantial increase in published literature and public media focus in the past decade. Food addiction has previously demonstrated an overlap with overweight and obesity, a risk for cardiovascular disease. This increased focus has led to the establishment of numerous support options for addictive eating behaviors, yet evidence-based support options are lacking. Objective: This study aimed to evaluate the availability and content of support options, accessible online, for food addiction. Methods: A standardized Web search was conducted using 4 search engines to identify current support availability for food addiction. Through use of a comprehensive data extraction sheet, 2 reviewers independently extracted data related to the program or intervention characteristics, and support fidelity including fundamentals, support modality, social support offered, program or intervention origins, member numbers, and program or intervention evaluation. Results: Of the 800 records retrieved, 13 (1.6%, 13/800) websites met the inclusion criteria. All 13 websites reported originating in the United States, and 1 website reported member numbers. The use of credentialed health professionals was reported by only 3 websites, and 5 websites charged a fee-for-service. The use of the 12 steps or traditions was evident in 11 websites, and 9 websites described the use of food plans. In total, 6 websites stated obligatory peer support, and 11 websites featured spirituality as a main theme of delivery. Moreover, 12 websites described phone meetings as the main program delivery modality, with 7 websites stating face-to-face delivery and 4 opting for online meetings. Newsletters (n=5), closed social media groups (n=5), and retreat programs (n=5) were the most popular forms of social support. Conclusions: This is the first review to analyze online support options for food addiction. Very few online support options include health professionals, and a strengthening argument is forming for an increase in support options for food addiction. This review forms part of this argument by showing a lack of evidence-based options. By reviewing current support availability, it can provide a guide toward the future development of evidence-based support for food addiction. UR - http://cardio.jmir.org/2018/1/e10/ UR - http://dx.doi.org/10.2196/cardio.8718 UR - http://www.ncbi.nlm.nih.gov/pubmed/31758778 ID - info:doi/10.2196/cardio.8718 ER - TY - JOUR AU - Wu, Bing PY - 2018/04/16 TI - Patient Continued Use of Online Health Care Communities: Web Mining of Patient-Doctor Communication JO - J Med Internet Res SP - e126 VL - 20 IS - 4 KW - health information management KW - health communication KW - information literacy KW - social networking N2 - Background: In practice, online health communities have passed the adoption stage and reached the diffusion phase of development. In this phase, patients equipped with knowledge regarding the issues involved in health care are capable of switching between different communities to maximize their online health community activities. Online health communities employ doctors to answer patient questions, and high quality online health communities are more likely to be acknowledged by patients. Therefore, the factors that motivate patients to maintain ongoing relationships with online health communities must be addressed. However, this has received limited scholarly attention. Objective: The purpose of this study was to identify the factors that drive patients to continue their use of online health communities where doctor-patient communication occurs. This was achieved by integrating the information system success model with online health community features. Methods: A Web spider was used to download and extract data from one of the most authoritative Chinese online health communities in which communication occurs between doctors and patients. The time span analyzed in this study was from January 2017 to March 2017. A sample of 469 valid anonymous patients with 9667 posts was obtained (the equivalent of 469 respondents in survey research). A combination of Web mining and structural equation modeling was then conducted to test the research hypotheses. Results: The results show that the research framework for integrating the information system success model and online health community features contributes to our understanding of the factors that drive patients' relationships with online health communities. The primary findings are as follows: (1) perceived usefulness is found to be significantly determined by three exogenous variables (ie, social support, information quality, and service quality; R2=0.88). These variables explain 87.6% of the variance in perceived usefulness of online health communities; (2) similarly, patient satisfaction was found to be significantly determined by the three variables listed above (R2=0.69). These variables explain 69.3% of the variance seen in patient satisfaction; (3) continuance use (dependent variable) is significantly influenced by perceived usefulness and patient satisfaction (R2=0.93). That is, the combined effects of perceived usefulness and patient satisfaction explain 93.4% of the variance seen in continuance use; and (4) unexpectedly, individual literacy had no influence on perceived usefulness and satisfaction of patients using online health communities. Conclusions: First, this study contributes to the existing literature on the continuance use of online health communities using an empirical approach. Second, an appropriate metric was developed to assess constructs related to the proposed research model. Additionally, a Web spider enabled us to acquire objective data relatively easily and frequently, thereby overcoming a major limitation of survey techniques. UR - http://www.jmir.org/2018/4/e126/ UR - http://dx.doi.org/10.2196/jmir.9127 UR - http://www.ncbi.nlm.nih.gov/pubmed/29661747 ID - info:doi/10.2196/jmir.9127 ER - TY - JOUR AU - van Eenbergen, C. Mies AU - van de Poll-Franse, V. Lonneke AU - Krahmer, Emiel AU - Verberne, Suzan AU - Mols, Floortje PY - 2018/04/03 TI - Analysis of Content Shared in Online Cancer Communities: Systematic Review JO - JMIR Cancer SP - e6 VL - 4 IS - 1 KW - cancer KW - survivors KW - support groups KW - internet N2 - Background: The content that cancer patients and their relatives (ie, posters) share in online cancer communities has been researched in various ways. In the past decade, researchers have used automated analysis methods in addition to manual coding methods. Patients, providers, researchers, and health care professionals can learn from experienced patients, provided that their experience is findable. Objective: The aim of this study was to systematically review all relevant literature that analyzes user-generated content shared within online cancer communities. We reviewed the quality of available research and the kind of content that posters share with each other on the internet. Methods: A computerized literature search was performed via PubMed (MEDLINE), PsycINFO (5 and 4 stars), Cochrane Central Register of Controlled Trials, and ScienceDirect. The last search was conducted in July 2017. Papers were selected if they included the following terms: (cancer patient) and (support group or health communities) and (online or internet). We selected 27 papers and then subjected them to a 14-item quality checklist independently scored by 2 investigators. Results: The methodological quality of the selected studies varied: 16 were of high quality and 11 were of adequate quality. Of those 27 studies, 15 were manually coded, 7 automated, and 5 used a combination of methods. The best results can be seen in the papers that combined both analytical methods. The number of analyzed posts ranged from 200 to 1,500,000; the number of analyzed posters ranged from 75 to 90,000. The studies analyzing large numbers of posts mainly related to breast cancer, whereas those analyzing small numbers were related to other types of cancers. A total of 12 studies involved some or entirely automatic analysis of the user-generated content. All the authors referred to two main content categories: informational support and emotional support. In all, 15 studies reported only on the content, 6 studies explicitly reported on content and social aspects, and 6 studies focused on emotional changes. Conclusions: In the future, increasing amounts of user-generated content will become available on the internet. The results of content analysis, especially of the larger studies, give detailed insights into patients? concerns and worries, which can then be used to improve cancer care. To make the results of such analyses as usable as possible, automatic content analysis methods will need to be improved through interdisciplinary collaboration. UR - http://cancer.jmir.org/2018/1/e6/ UR - http://dx.doi.org/10.2196/cancer.7926 UR - http://www.ncbi.nlm.nih.gov/pubmed/29615384 ID - info:doi/10.2196/cancer.7926 ER - TY - JOUR AU - Allin, Sonya AU - Shepherd, John AU - Tomasone, Jennifer AU - Munce, Sarah AU - Linassi, Gary AU - Hossain, Noreen Saima AU - Jaglal, Susan PY - 2018/03/21 TI - Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study JO - JMIR Rehabil Assist Technol SP - e6 VL - 5 IS - 1 KW - health education KW - internet KW - spinal cord injuries KW - self-management N2 - Background: Rehospitalization rates resulting from secondary conditions in persons with spinal cord injuries (SCI) are high. Self-management programs for many chronic conditions have been associated with decreases in hospital readmissions. However, in the SCI community, evidence suggests that satisfaction with traditional self-management programs is low. Users with SCI have indicated preference for programs that are online (rather than in-person), that target SCI-specific concerns, and are led by peers with SCI. There is currently no program with all of these features, which addresses self-management of secondary conditions after SCI. Objective: The aim of this study was to provide details of a participatory design (PD) process for an internet-mediated self-management program for users with SCI (called SCI & U) and illustrate how it has been used to define design constraints and solutions. Methods: Users were involved in development as codesigners, codevelopers, and key informants. Codesigners and codevelopers were recruited from consumer advocacy groups and worked with a core development team. Key informants were recruited from geographically distributed advocacy groups to form a product advisory council that met regularly with the core team. During meetings, codesigners and informants walked through stages of work that typify PD processes such as exploration, discovery, and prototyping. This paper details the process by analyzing 10 meetings that took place between August 2015 and May 2016. Meetings were recorded, transcribed, and subjected to an inductive thematic analysis; resulting themes were organized according to their relationship to PD stages. Results: A total of 16 individuals participated in meeting discussions, including 7 researchers and 9 persons with SCI from 4 Canadian provinces. Themes of trust, expertise, and community emerged in every group discussion. The exploration stage revealed interest in online self-management resources coupled with concerns about information credibility. In general, participants indicated that they felt more confident with information received from trusted, in-person sources (eg, peers or health care professionals) than information found online. The discovery stage saw participants propose and discuss concepts to filter credible information and highlight community expertise, namely (1) a community-curated resource database, (2) online information navigators, and (3) group chats with peers. Several tools and techniques were collectively prototyped in an effort to foster trust and community; these are illustrated in the Results section. Conclusions: A PD process engaging users as codesigners, codevelopers, and informants can be used to identify design concerns and prototype online solutions to promote self-management after SCI. Future work will assess the usability of the collectively designed tools among a broad population of Canadians with SCI and the tools? impact on self-efficacy and health. UR - http://rehab.jmir.org/2018/1/e6/ UR - http://dx.doi.org/10.2196/rehab.8158 UR - http://www.ncbi.nlm.nih.gov/pubmed/29563075 ID - info:doi/10.2196/rehab.8158 ER - TY - JOUR AU - Jeon, Andrew Yongwoog AU - Hale, Brent AU - Knackmuhs, Eric AU - Mackert, Michael PY - 2018/03/20 TI - Weight Stigma Goes Viral on the Internet: Systematic Assessment of YouTube Comments Attacking Overweight Men and Women JO - Interact J Med Res SP - e6 VL - 7 IS - 1 KW - stigma KW - cyberbullying KW - gender KW - sex differences KW - verbal behavior N2 - Background: Anonymous verbal attacks against overweight individuals on social media are common and widespread. These comments often use negative, misogynist, or derogatory words, which stigmatize the targeted individuals with obesity. These verbal attacks may cause depression in overweight individuals, which could subsequently promote unhealthy eating behavior (ie, binge eating) and further weight gain. To develop an intervention policy and strategies that tackle the anonymous, Web-based verbal attacks, a thorough understanding of the comments is necessary. Objective: This study aimed to examine how anonymous users verbally attack or defend overweight individuals in terms of 3 themes: (1) topic of verbal attack (ie, what aspects of overweight individuals are verbally attacked), (2) gender of commenters and targeted overweight individuals, and (3) intensity of derogation depending on the targeted gender (ie, the number of swear words used within comments). Methods: This study analyzed the content of YouTube comments that discuss overweight individuals or groups from 2 viral videos, titled ?Fat Girl Tinder Date? and ?Fat Guy Tinder Date.? The twin videos provide an avenue through which to analyze discussions of obesity as they organically occurred in a contemporary setting. We randomly sampled and analyzed 320 comments based on a coding instrument developed for this study. Results: First, there were twice as many comments verbally attacking overweight individuals (n=174) than comments defending them (n=89). Second, overweight women are attacked for their capacities (eg, laziness, maturity; 14/51, 28%), whereas overweight men are attacked for their heterosocial skills (eg, rudeness, annoyance; 24/29, 83%). Third, the majority of commenters who attacked overweight women are male (42/52, 81%). Fourth, attacking comments generated toward overweight women included more swear words (mean 0.44, SD 0.77) than those targeting men (mean 0.23, SD 0.48). Conclusions: Our data elucidate a worrying situation of frequent disinhibited aggressive messages against overweight individuals online. Importantly, the patterns of verbal aggression differ depending on the gender of the targeted overweight individuals. Thus, gender-tailored intervention strategies that specifically tackle Internet users? verbal aggression against overweight individuals need to be developed. UR - http://www.i-jmr.org/2018/1/e6/ UR - http://dx.doi.org/10.2196/ijmr.9182 UR - http://www.ncbi.nlm.nih.gov/pubmed/29559426 ID - info:doi/10.2196/ijmr.9182 ER - TY - JOUR AU - Shorey, Shefaly AU - Chee, Cornelia AU - Chong, Yap-Seng AU - Ng, Debby Esperanza AU - Lau, Ying AU - Dennis, Cindy-Lee PY - 2018/03/14 TI - Evaluation of Technology-Based Peer Support Intervention Program for Preventing Postnatal Depression: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e81 VL - 7 IS - 3 KW - anxiety KW - loneliness KW - peer group KW - postpartum depression KW - social support KW - technology N2 - Background: Multiple international agencies, including the World Health Organization and the International Monetary Fund, have emphasized the importance of maternal mental health for optimal child health and development. Adequate social support is vital for the most vulnerable to postpartum mood disorders. Hence, an urgent need for sustainable social support programs to aid mothers ease into their new parenting role exists. Objective: This study protocol aims to examine the effectiveness of a technology-based peer support intervention program among mothers at risk for postnatal depression in the early postpartum period. Methods: A randomized controlled 2-group pretest and repeated posttest experimental design will be used. The study will recruit 118 mothers from the postnatal wards of a tertiary public hospital in Singapore. Eligible mothers will be randomly allocated to receive either the peer support intervention program or routine perinatal care from the hospital. Peer volunteers will be mothers who have experienced self-reported depression and will be receiving face-to-face training to support new mothers at risk of depression. Outcome measures include postnatal depression, anxiety, loneliness, and social support. Data will be collected at immediate postnatal period (day of discharge from the hospital), at fourth week and twelfth week post childbirth. Results: The recruitment and training of peer support volunteers (N=20) ended in June 2017, whereas recruitment of study participants commenced in July 2017 and is still ongoing. The current recruitment for new mothers stands at 73, with 36 in the control group and 37 in the intervention group. Data collection is projected to be completed by May 2018. Conclusions: This study will identify a potentially effective and clinically useful method to prevent postnatal depression in new mothers, which is the top cause of maternal morbidity. Receiving social support from others who share similar experiences may enhance the positive parenting experiences of mothers, which in turn can improve the psychosocial well-being of the mothers, tighten mother-child bond, and enhance overall family dynamics for mothers and infants. Trial Registration: International Standard Randomized Controlled Trial Number ISRCTN14864807; http://www.isrctn.com/ISRCTN14864807 (Archived by WebCite at http://www.webcitation.org/6xtBNvBTX) UR - http://www.researchprotocols.org/2018/3/e81/ UR - http://dx.doi.org/10.2196/resprot.9416 UR - http://www.ncbi.nlm.nih.gov/pubmed/29540338 ID - info:doi/10.2196/resprot.9416 ER - TY - JOUR AU - Elaheebocus, Ally Sheik Mohammad Roushdat AU - Weal, Mark AU - Morrison, Leanne AU - Yardley, Lucy PY - 2018/02/22 TI - Peer-Based Social Media Features in Behavior Change Interventions: Systematic Review JO - J Med Internet Res SP - e20 VL - 20 IS - 2 KW - systematic review KW - social media KW - behavior control KW - health behavior KW - behavioral medicine KW - eHealth N2 - Background: Incorporating social media features into digital behavior change interventions (DBCIs) has the potential to contribute positively to their success. However, the lack of clear design principles to describe and guide the use of these features in behavioral interventions limits cross-study comparisons of their uses and effects. Objective: The aim of this study was to provide a systematic review of DBCIs targeting modifiable behavioral risk factors that have included social media features as part of their intervention infrastructure. A taxonomy of social media features is presented to inform the development, description, and evaluation of behavioral interventions. Methods: Search terms were used in 8 databases to identify DBCIs that incorporated social media features and targeted tobacco smoking, diet and nutrition, physical activities, or alcohol consumption. The screening and review process was performed by 2 independent researchers. Results: A total of 5264 articles were screened, and 143 articles describing a total of 134 studies were retained for full review. The majority of studies (70%) reported positive outcomes, followed by 28% finding no effects with regard to their respective objectives and hypothesis, and 2% of the studies found that their interventions had negative outcomes. Few studies reported on the association between the inclusion of social media features and intervention effect. A taxonomy of social media features used in behavioral interventions has been presented with 36 social media features organized under 7 high-level categories. The taxonomy has been used to guide the analysis of this review. Conclusions: Although social media features are commonly included in DBCIs, there is an acute lack of information with respect to their effect on outcomes and a lack of clear guidance to inform the selection process based on the features? suitability for the different behaviors. The proposed taxonomy along with the set of recommendations included in this review will support future research aimed at isolating and reporting the effects of social media features on DBCIs, cross-study comparisons, and evaluations. UR - http://www.jmir.org/2018/2/e20/ UR - http://dx.doi.org/10.2196/jmir.8342 UR - http://www.ncbi.nlm.nih.gov/pubmed/29472174 ID - info:doi/10.2196/jmir.8342 ER - TY - JOUR AU - Baumel, Amit AU - Tinkelman, Amanda AU - Mathur, Nandita AU - Kane, M. John PY - 2018/02/13 TI - Digital Peer-Support Platform (7Cups) as an Adjunct Treatment for Women With Postpartum Depression: Feasibility, Acceptability, and Preliminary Efficacy Study JO - JMIR Mhealth Uhealth SP - e38 VL - 6 IS - 2 KW - mhealth KW - postpartum depression KW - perinatal mood disorder KW - peer support KW - online KW - self-help N2 - Background: Peer support is considered to be an important framework of support for mothers experiencing postpartum depression (PPD); however, some barriers exist that may limit its use including peer availability and mothers? lack of time due to child care. Objective: This non-randomized study was designed to examine the feasibility, acceptance, and preliminary clinical outcomes of using 7 Cups of Tea (7Cups), a digital platform that delivers self-help tools and 24/7 emotional support delivered by trained volunteers, as an adjunct treatment for mothers diagnosed with PPD. Methods: Mothers with PPD were referred during intake to the study coach who provided guidance about 7Cups. 7Cups features included self-help tools and chats with trained volunteers who had experienced a perinatal mood disorder in their past. Acceptability was measured by examining self-reports and user engagement with the program. The primary outcome was the Edinburgh Postnatal Depression Scale (EPDS) change score between pre- and postintervention at 2 months, as collected in usual care by clinicians blinded to the study questions. Using a propensity score matching to control for potential confounders, we compared women receiving 7Cups to women receiving treatment as usual (TAU). Results: Participants (n=19) proactively logged into 7Cups for a median of 12 times and 175 minutes. Program use was mostly through the mobile app (median of mobile use 94%) and between 18:00 and 08:00 when clinicians are unavailable (68% of total program use time). Participants chatted with volunteers for a total of 3064 minutes and have indicated in their responses 0 instances in which they felt unsafe. Intent-to-treat analysis revealed that 7Cups recipients experienced significant decreases in EPDS scores (P<.001, Cohen d=1.17). No significant difference in EPDS decrease over time was found between 7Cups and TAU, yet the effect size was medium favoring 7Cups (P=.05, Cohen d=0.58). Conclusions: This study supports using a computerized method to train lay people, without any in-person guidance or screening, and engage them with patients diagnosed with mental illness as part of usual care. The medium effect size (d=0.58) favoring the 7Cups group relative to TAU suggests that 7Cups might enhance treatment outcomes. A fully powered trial has to be conducted to examine this effect. UR - http://mhealth.jmir.org/2018/2/e38/ UR - http://dx.doi.org/10.2196/mhealth.9482 UR - http://www.ncbi.nlm.nih.gov/pubmed/29439944 ID - info:doi/10.2196/mhealth.9482 ER - TY - JOUR AU - Sinha, Ashnish AU - Porter, Tom AU - Wilson, Andrew PY - 2018/01/24 TI - The Use of Online Health Forums by Patients With Chronic Cough: Qualitative Study JO - J Med Internet Res SP - e19 VL - 20 IS - 1 KW - cough KW - chronic disease KW - Internet KW - eHealth KW - health impact assessment KW - information systems KW - help-seeking behavior KW - social support N2 - Background: Online health discussion forums are used by different patient groups for sharing advice and information. Chronic cough is a common problem, and people with chronic cough use online health forums alongside formal medical therapies. Objective: The objective of this study was to assess how chronic cough sufferers use online health forums, including the treatment advice they share with one another and the possible clinical uses of online forums in chronic cough. Methods: Three open-access health forums were searched for threads related to chronic cough. Identified threads were screened against inclusion and exclusion criteria adapted from the British Thoracic Society (BTS) Guidelines related to chronic cough diagnosis. Included data were subjected to qualitative thematic analysis. All study data were cross-validated by a second author and discrepancies were resolved. Results: In total, 96 threads were included in the analysis, consisting of posts by 223 forum users. Three main themes were identified: the effect of chronic cough on the lives of patients, the treatment advice shared between users, and the provision of support within forums. Conclusions: Chronic cough symptoms had impacts on multiple aspects of patients? health and well-being. To try and combat these issues, forum users suggested a variety of treatments to one another, ranging from mainstream traditional therapies to odd alternative remedies. The provision of support and empathy were also prominent themes in discussion threads. Online forums themselves may provide increasing benefit to users through the addition of a moderator. UR - http://www.jmir.org/2018/1/e19/ UR - http://dx.doi.org/10.2196/jmir.7975 UR - http://www.ncbi.nlm.nih.gov/pubmed/29367181 ID - info:doi/10.2196/jmir.7975 ER - TY - JOUR AU - Pian, Wenjing AU - Khoo, SG Christopher AU - Chi, Jianxing PY - 2017/12/21 TI - Automatic Classification of Users? Health Information Need Context: Logistic Regression Analysis of Mouse-Click and Eye-Tracker Data JO - J Med Internet Res SP - e424 VL - 19 IS - 12 KW - information-seeking behavior KW - social media KW - Internet KW - consumer health information KW - medical informatics N2 - Background: Users searching for health information on the Internet may be searching for their own health issue, searching for someone else?s health issue, or browsing with no particular health issue in mind. Previous research has found that these three categories of users focus on different types of health information. However, most health information websites provide static content for all users. If the three types of user health information need contexts can be identified by the Web application, the search results or information offered to the user can be customized to increase its relevance or usefulness to the user. Objective: The aim of this study was to investigate the possibility of identifying the three user health information contexts (searching for self, searching for others, or browsing with no particular health issue in mind) using just hyperlink clicking behavior; using eye-tracking information; and using a combination of eye-tracking, demographic, and urgency information. Predictive models are developed using multinomial logistic regression. Methods: A total of 74 participants (39 females and 35 males) who were mainly staff and students of a university were asked to browse a health discussion forum, Healthboards.com. An eye tracker recorded their examining (eye fixation) and skimming (quick eye movement) behaviors on 2 types of screens: summary result screen displaying a list of post headers, and detailed post screen. The following three types of predictive models were developed using logistic regression analysis: model 1 used only the time spent in scanning the summary result screen and reading the detailed post screen, which can be determined from the user?s mouse clicks; model 2 used the examining and skimming durations on each screen, recorded by an eye tracker; and model 3 added user demographic and urgency information to model 2. Results: An analysis of variance (ANOVA) analysis found that users? browsing durations were significantly different for the three health information contexts (P<.001). The logistic regression model 3 was able to predict the user?s type of health information context with a 10-fold cross validation mean accuracy of 84% (62/74), followed by model 2 at 73% (54/74) and model 1 at 71% (52/78). In addition, correlation analysis found that particular browsing durations were highly correlated with users? age, education level, and the urgency of their information need. Conclusions: A user?s type of health information need context (ie, searching for self, for others, or with no health issue in mind) can be identified with reasonable accuracy using just user mouse clicks that can easily be detected by Web applications. Higher accuracy can be obtained using Google glass or future computing devices with eye tracking function. UR - http://www.jmir.org/2017/12/e424/ UR - http://dx.doi.org/10.2196/jmir.8354 UR - http://www.ncbi.nlm.nih.gov/pubmed/29269342 ID - info:doi/10.2196/jmir.8354 ER - TY - JOUR AU - Kaylor-Hughes, J. Catherine AU - Rawsthorne, Mat AU - Coulson, S. Neil AU - Simpson, Sandra AU - Simons, Lucy AU - Guo, Boliang AU - James, Marilyn AU - Moran, Paul AU - Simpson, Jayne AU - Hollis, Chris AU - Avery, J. Anthony AU - Tata, J. Laila AU - Williams, Laura AU - AU - Morriss, K. Richard PY - 2017/12/18 TI - Direct to Public Peer Support and e-Therapy Program Versus Information to Aid Self-Management of Depression and Anxiety: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e231 VL - 6 IS - 12 KW - depression KW - anxiety KW - peer support KW - online KW - self-management N2 - Background: Regardless of geography or income, effective help for depression and anxiety only reaches a small proportion of those who might benefit from it. The scale of the problem suggests a role for effective, safe, anonymized public health?driven Web-based services such as Big White Wall (BWW), which offer immediate peer support at low cost. Objective: Using Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) methodology, the aim of this study was to determine the population reach, effectiveness, cost-effectiveness, and barriers and drivers to implementation of BWW compared with Web-based information compiled by UK?s National Health Service (NHS, NHS Choices Moodzone) in people with probable mild to moderate depression and anxiety disorder. Methods: A pragmatic, parallel-group, single-blind randomized controlled trial (RCT) is being conducted using a fully automated trial website in which eligible participants are randomized to receive either 6 months access to BWW or signposted to the NHS Moodzone site. The recruitment of 2200 people to the study will be facilitated by a public health engagement campaign involving general marketing and social media, primary care clinical champions, health care staff, large employers, and third sector groups. People will refer themselves to the study and will be eligible if they are older than 16 years, have probable mild to moderate depression or anxiety disorders, and have access to the Internet. Results: The primary outcome will be the Warwick-Edinburgh Mental Well-Being Scale at 6 weeks. We will also explore the reach, maintenance, cost-effectiveness, and barriers and drivers to implementation and possible mechanisms of actions using a range of qualitative and quantitative methods. Conclusions: This will be the first fully digital trial of a direct to public online peer support program for common mental disorders. The potential advantages of adding this to current NHS mental health services and the challenges of designing a public health campaign and RCT of two digital interventions using a fully automated digital enrollment and data collection process are considered for people with depression and anxiety. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN): 12673428; http://www.controlled-trials.com/ISRCTN12673428/12673428 (Archived by WebCite at http://www.webcitation.org/6uw6ZJk5a) UR - http://www.researchprotocols.org/2017/12/e231/ UR - http://dx.doi.org/10.2196/resprot.8061 UR - http://www.ncbi.nlm.nih.gov/pubmed/29254909 ID - info:doi/10.2196/resprot.8061 ER - TY - JOUR AU - Easton, Katherine AU - Diggle, Jacob AU - Ruethi-Davis, Mabel AU - Holmes, Megan AU - Byron-Parker, Darian AU - Nuttall, Jessica AU - Blackmore, Chris PY - 2017/10/30 TI - Qualitative Exploration of the Potential for Adverse Events When Using an Online Peer Support Network for Mental Health: Cross-Sectional Survey JO - JMIR Ment Health SP - e49 VL - 4 IS - 4 KW - digital technology KW - mental health KW - online peer support KW - adverse events KW - online survey N2 - Background: Online peer support networks are a growing area of mental health support for offering social connection, identity, and support. However, it has been reported that not all individuals have a positive experience on such networks. The potential for adverse events within a moderated online peer support network is a new area of research exploration. Objective: The objective of the study was to determine if use of an online moderated peer networks leads to adverse events for users. Methods: Four biannual online surveys (October 2014 to March 2016) were conducted by a large national UK mental health charity, with users of their online peer support network exploring personal safety, moderation, experiences on the site, and how the site could be improved. Data were analyzed using thematic analysis by 2 independent researchers using a priori themes: negative experiences of moderation, social exclusion, contagion, negative interactions with other users, online relationships, co-rumination and collusion, and other. Results: In total, 2353 survey responses were logged with 197 (8.37%) documenting an adverse event of negative experience. A dominant theme of negative experiences of moderation emerged (73/197, 37.1%) with evidence of social exclusion (50/197, 25.4%). Reading user posts was shown to be a cause of worry and distress for a few users, and analysis highlighted several instances of depressogenic and emotional contagion as well as some limited evidence of behavioral contagion (46/197, 23.4%). Very limited evidence of co-rumination (1/197, 0.5%) and no evidence of collusion were identified. Conclusions: Evidence of adverse events was identified at low levels in the sample of respondents, although we have no comparison data to indicate if levels are low compared with comparable platforms. Not all users of online peer support networks find them wholly beneficial. Research must explore what works for whom. The next stage of service development should consider which users may be likely to receive no benefit, or even deteriorate, as a result of using the service. UR - http://mental.jmir.org/2017/4/e49/ UR - http://dx.doi.org/10.2196/mental.8168 UR - http://www.ncbi.nlm.nih.gov/pubmed/29084710 ID - info:doi/10.2196/mental.8168 ER - TY - JOUR AU - Abbe, Adeline AU - Falissard, Bruno PY - 2017/10/23 TI - Stopping Antidepressants and Anxiolytics as Major Concerns Reported in Online Health Communities: A Text Mining Approach JO - JMIR Ment Health SP - e48 VL - 4 IS - 4 KW - social media KW - antidepressant KW - anxiolytic KW - text mining KW - data mining N2 - Background: Internet is a particularly dynamic way to quickly capture the perceptions of a population in real time. Complementary to traditional face-to-face communication, online social networks help patients to improve self-esteem and self-help. Objective: The aim of this study was to use text mining on material from an online forum exploring patients? concerns about treatment (antidepressants and anxiolytics). Methods: Concerns about treatment were collected from discussion titles in patients? online community related to antidepressants and anxiolytics. To examine the content of these titles automatically, we used text mining methods, such as word frequency in a document-term matrix and co-occurrence of words using a network analysis. It was thus possible to identify topics discussed on the forum. Results: The forum included 2415 discussions on antidepressants and anxiolytics over a period of 3 years. After a preprocessing step, the text mining algorithm identified the 99 most frequently occurring words in titles, among which were escitalopram, withdrawal, antidepressant, venlafaxine, paroxetine, and effect. Patients? concerns were related to antidepressant withdrawal, the need to share experience about symptoms, effects, and questions on weight gain with some drugs. Conclusions: Patients? expression on the Internet is a potential additional resource in addressing patients? concerns about treatment. Patient profiles are close to that of patients treated in psychiatry. UR - http://mental.jmir.org/2017/4/e48/ UR - http://dx.doi.org/10.2196/mental.7797 UR - http://www.ncbi.nlm.nih.gov/pubmed/29061554 ID - info:doi/10.2196/mental.7797 ER - TY - JOUR AU - Zeng, Yuqun AU - Liu, Xusheng AU - Wang, Yanshan AU - Shen, Feichen AU - Liu, Sijia AU - Rastegar-Mojarad, Majid AU - Wang, Liwei AU - Liu, Hongfang PY - 2017/10/16 TI - Recommending Education Materials for Diabetic Questions Using Information Retrieval Approaches JO - J Med Internet Res SP - e342 VL - 19 IS - 10 KW - education materials KW - patients KW - questions KW - recommendation KW - information retrieval N2 - Background: Self-management is crucial to diabetes care and providing expert-vetted content for answering patients? questions is crucial in facilitating patient self-management. Objective: The aim is to investigate the use of information retrieval techniques in recommending patient education materials for diabetic questions of patients. Methods: We compared two retrieval algorithms, one based on Latent Dirichlet Allocation topic modeling (topic modeling-based model) and one based on semantic group (semantic group-based model), with the baseline retrieval models, vector space model (VSM), in recommending diabetic patient education materials to diabetic questions posted on the TuDiabetes forum. The evaluation was based on a gold standard dataset consisting of 50 randomly selected diabetic questions where the relevancy of diabetic education materials to the questions was manually assigned by two experts. The performance was assessed using precision of top-ranked documents. Results: We retrieved 7510 diabetic questions on the forum and 144 diabetic patient educational materials from the patient education database at Mayo Clinic. The mapping rate of words in each corpus mapped to the Unified Medical Language System (UMLS) was significantly different (P<.001). The topic modeling-based model outperformed the other retrieval algorithms. For example, for the top-retrieved document, the precision of the topic modeling-based, semantic group-based, and VSM models was 67.0%, 62.8%, and 54.3%, respectively. Conclusions: This study demonstrated that topic modeling can mitigate the vocabulary difference and it achieved the best performance in recommending education materials for answering patients? questions. One direction for future work is to assess the generalizability of our findings and to extend our study to other disease areas, other patient education material resources, and online forums. UR - http://www.jmir.org/2017/10/e342/ UR - http://dx.doi.org/10.2196/jmir.7754 UR - http://www.ncbi.nlm.nih.gov/pubmed/29038097 ID - info:doi/10.2196/jmir.7754 ER - TY - JOUR AU - Coulson, S. Neil AU - Bullock, Emma AU - Rodham, Karen PY - 2017/10/13 TI - Exploring the Therapeutic Affordances of Self-Harm Online Support Communities: An Online Survey of Members JO - JMIR Ment Health SP - e44 VL - 4 IS - 4 KW - self-harm KW - social network KW - social support KW - qualitative research KW - online support group N2 - Background: A growing number of online communities have been established to support those who self-harm. However, little is known about the therapeutic affordances arising from engagement with these communities and resulting outcomes. Objective: The aim of this study was to explore the presence of therapeutic affordances as reported by members of self-harm online support communities. Methods: In total, 94 respondents (aged 13-63 years, mean=23.5 years; 94% female) completed an online survey exploring their experiences of engaging with a self-harm online support community. Respondents varied in terms of how long they had been accessing an online community, with 22% (21/94) accessing less than 1 year, 39% (37/94) 1 to 2 years, 14% (13/94) 2 to 3 years, and 24.5% (23/94) more than 3 years. Responses were analyzed using deductive thematic analysis. Results: The results of our analysis describe each of the five therapeutic affordances that were present in the data, namely (1) connection, the ability to make contact with others who self-harm for the purposes of mutual support and in so doing reduce feelings of loneliness and isolation; (2) adaptation, that is, how use of online support varies in relation to the personal circumstances of the individual user; (3) exploration, that is, the ability to learn about self-harm and learn about strategies to reduce or stop self-harming behavior; (4) narration, that is, the ability to share experiences, as well as read about the experiences of others; and (5) self-presentation, that is, how and what users present about themselves to others in the online community. Conclusions: Our findings suggest that engagement with self-harm online support communities may confer a range of therapeutic benefits for some users, which may serve to minimize the psychosocial burden of self-harm and promote positive coping strategies. In addition, the online nature of the support available may be helpful to those who are unable to access face-to-face support. UR - http://mental.jmir.org/2017/4/e44/ UR - http://dx.doi.org/10.2196/mental.8084 UR - http://www.ncbi.nlm.nih.gov/pubmed/29030324 ID - info:doi/10.2196/mental.8084 ER - TY - JOUR AU - Eikey, Victoria Elizabeth AU - Reddy, C. Madhu AU - Booth, M. Kayla AU - Kvasny, Lynette AU - Blair, L. Johnna AU - Li, Victor AU - Poole, S. Erika PY - 2017/10/12 TI - Desire to Be Underweight: Exploratory Study on a Weight Loss App Community and User Perceptions of the Impact on Disordered Eating Behaviors JO - JMIR Mhealth Uhealth SP - e150 VL - 5 IS - 10 KW - mobile applications KW - health apps KW - feeding and eating disorder KW - disordered eating behaviors KW - desire to be underweight KW - body mass index KW - weight loss KW - smartphone KW - mHealth KW - online community KW - forum KW - profile KW - posts KW - human computer interaction N2 - Background: Mobile health (mHealth) apps for weight loss (weight loss apps) can be useful diet and exercise tools for individuals in need of losing weight. Most studies view weight loss app users as these types of individuals, but not all users have the same needs. In fact, users with disordered eating behaviors who desire to be underweight are also utilizing weight loss apps; however, few studies give a sense of the prevalence of these users in weight loss app communities and their perceptions of weight loss apps in relation to disordered eating behaviors. Objective: The aim of this study was to provide an analysis of users? body mass indices (BMIs) in a weight loss app community and examples of how users with underweight BMI goals perceive the impact of the app on disordered eating behaviors. Methods: We focused on two aspects of a weight loss app (DropPounds): profile data and forum posts, and we moved from a broader picture of the community to a narrower focus on users? perceptions. We analyzed profile data to better understand the goal BMIs of all users, highlighting the prevalence of users with underweight BMI goals. Then we explored how users with a desire to be underweight discussed the weight loss app?s impact on disordered eating behaviors. Results: We found three main results: (1) no user (regardless of start BMI) starts with a weight gain goal, and most users want to lose weight; (2) 6.78% (1261/18,601) of the community want to be underweight, and most identify as female; (3) users with underweight BMI goals tend to view the app as positive, especially for reducing bingeing; however, some acknowledge its role in exacerbating disordered eating behaviors. Conclusions: These findings are important for our understanding of the different types of users who utilize weight loss apps, the perceptions of weight loss apps related to disordered eating, and how weight loss apps may impact users with a desire to be underweight. Whereas these users had underweight goals, they often view the app as helpful in reducing disordered eating behaviors, which led to additional questions. Therefore, future research is needed. UR - http://mhealth.jmir.org/2017/10/e150/ UR - http://dx.doi.org/10.2196/mhealth.6683 UR - http://www.ncbi.nlm.nih.gov/pubmed/29025694 ID - info:doi/10.2196/mhealth.6683 ER - TY - JOUR AU - Amann, Julia AU - Rubinelli, Sara PY - 2017/10/10 TI - Views of Community Managers on Knowledge Co-creation in Online Communities for People With Disabilities: Qualitative Study JO - J Med Internet Res SP - e320 VL - 19 IS - 10 KW - community networks KW - internet KW - patient-centered care KW - telemedicine KW - community participation KW - co-creation N2 - Background: The use of online communities to promote end user involvement and co-creation in the product and service innovation process is well documented in the marketing and management literature. Whereas online communities are widely used for health care service provision and peer-to-peer support, only little is known about how they could be integrated into the health care innovation process. Objective: The overall objective of this qualitative study was to explore community managers? views on and experiences with knowledge co-creation in online communities for people with disabilities. Methods: A descriptive qualitative research design was used. Data were collected through semi-structured interviews with nine community managers. To complement the interview data, additional information was retrieved from the communities in the form of structural information (number of registered users, number and names of topic areas covered by the forum) and administrative information (terms and conditions and privacy statements, forum rules). Data were analyzed using thematic analysis. Results: Our results highlight two main aspects: peer-to-peer knowledge co-creation and types of collaboration with external actors. Although community managers strongly encouraged peer-to-peer knowledge co-creation, our findings indicated that these activities were not common practice in the communities under investigation. In fact, much of what related to co-creation, prototyping, and product development was still perceived to be directed by professionals and experts. Community managers described the role of their respective communities as informing this process rather than a driving force. The role of community members as advisors to researchers, health care professionals, and businesses was discussed in the context of types of collaboration with external actors. According to the community managers, most of the external inquiries related to research projects of students or health care professionals in training, who often joined a community for the sole purpose of recruiting participants for their research. Despite this unilateral form of knowledge co-creation, community managers acknowledged the mere interest of these user groups as beneficial, as long as their interest was not purely financially motivated. Being able to contribute to advancing research, improving products, and informing the planning and design of health care services were described as some of the key motivations to engage with external stakeholders. Conclusions: This paper draws attention to the currently under-investigated role of online communities as platforms for collaboration and co-creation between patients, health care professionals, researchers, and businesses. It describes community managers? views on and experiences with knowledge co-creation and provides recommendations on how these activities can be leveraged to foster knowledge co-creation in health care. Engaging in knowledge co-creation with online health communities may ultimately help to inform the planning and design of products, services, and research activities that better meet the actual needs of those living with a disability. UR - https://www.jmir.org/2017/10/e320/ UR - http://dx.doi.org/10.2196/jmir.7406 UR - http://www.ncbi.nlm.nih.gov/pubmed/29017993 ID - info:doi/10.2196/jmir.7406 ER - TY - JOUR AU - Petri?, Gregor AU - Atanasova, Sara AU - Kamin, Tanja PY - 2017/10/04 TI - Ill Literates or Illiterates? Investigating the eHealth Literacy of Users of Online Health Communities JO - J Med Internet Res SP - e331 VL - 19 IS - 10 KW - health literacy KW - online health community KW - user types KW - weights and measures KW - survey methods N2 - Background: Electronic health (eHealth) literacy is an important skill that allows patients to navigate intelligibly through the vast, often misleading Web-based world. Although eHealth literacy has been investigated in general and specific demographic populations, it has not yet been analyzed on users of online health communities (OHCs). Evidence shows that OHCs are important Web 2.0 applications for patients for managing their health, but at the same time, warnings have been expressed regarding the quality and relevance of shared information. No studies exist that investigate levels of eHealth literacy among users of OHCs and differences in eHealth literacy between different types of users. Objective: The study aimed to investigate eHealth literacy across different types of users of OHCs based on a revised and extended eHealth literacy scale (eHEALS). Methods: The study was based on a cross-sectional Web survey on a simple random sample of 15,000 registered users of the most popular general OHC in Slovenia. The final sample comprised 644 users of the studied OHC. An extended eHEALS (eHEALS-E) was tested with factor analytical procedures, whereas user types were identified with a hierarchical clustering algorithm. The research question was analyzed with analysis of variance (ANOVA) procedure and pairwise comparison tests. Results: Factor analysis of the revised and extended eHEALS revealed six dimensions: awareness of sources, recognizing quality and meaning, understanding information, perceived efficiency, validating information, and being smart on the Net. The factor solution demonstrates a good fit to the data (root mean square error of approximation [RMSEA]=.059). The most developed dimension of eHEALS-E is awareness of different Internet sources (mean=3.98, standard deviation [SD]=0.61), whereas the least developed is understanding information (mean=3.11, SD=0.75). Clustering resulted in four user types: active help-seekers (48.3%, 311/644), lurkers (31.8%, 205/644), core relational users (16.9%, 109/644), and low-engaged users (3%, 19/644). Analysis of the research question showed statistically significant differences among user types across all six dimensions of eHEALS-E. Most notably, core relational users performed worse than lurkers on the validating information dimension (P=.01) and worse than active help-seekers on the being smart on the Net dimension (P=.05). Active help-seekers have the highest scores in all dimensions of the eHEALS-E, whereas low-engaged users have statistically significantly lower scores on all dimensions of the eHEALS-E in comparison with the other groups. Conclusions: Those who are looking for advice and support in OHCs by making queries are well equipped with eHealth literacy skills to filter potential misinformation and detect bad advice. However, core relational users (who produce the most content in OHCs) have less-developed skills for cross-validating the information obtained and navigating successfully through the perils of the online world. Site managers should monitor their activity to avoid the spread of misinformation that might lead to unhealthy practices. UR - https://www.jmir.org/2017/10/e331/ UR - http://dx.doi.org/10.2196/jmir.7372 UR - http://www.ncbi.nlm.nih.gov/pubmed/28978496 ID - info:doi/10.2196/jmir.7372 ER - TY - JOUR AU - van Eenbergen, C. Mies AU - van de Poll-Franse, V. Lonneke AU - Heine, Peter AU - Mols, Floortje PY - 2017/09/28 TI - The Impact of Participation in Online Cancer Communities on Patient Reported Outcomes: Systematic Review JO - JMIR Cancer SP - e15 VL - 3 IS - 2 KW - cancer KW - survivors KW - patient reported outcomes KW - Internet KW - support groups N2 - Background: In recent years, the question of how patients? participating in online communities affects various patient reported outcomes (PROs) has been investigated in several ways. Objectives: This study aimed to systematically review all relevant literature identified using key search terms, with regard to, first, changes in PROs for cancer patients who participate in online communities and, second, the characteristics of patients who report such effects. Methods: A computerized search of the literature via PubMed (MEDLINE), PsycINFO (5 and 4 stars), Cochrane Central Register of Controlled Trials, and ScienceDirect was performed. Last search was conducted in June 2017. Studies with the following terms were included: (cancer patient) and (support group or health communities) and (online or Internet). A total of 21 studies were included and independently assessed by 2 investigators using an 11-item quality checklist. Results: The methodological quality of the selected studies varied: 12 were of high quality, eight were of adequate quality, and only one was of low quality. Most of the respondents were women (about 80%), most with breast cancer; their mean age was 50 years. The patients who were active in online support groups were mostly younger and more highly educated than the nonusers. The investigated PROs included general well-being (ie, mood and health), anxiety, depression, quality of life, posttraumatic growth, and cancer-related concerns. Only marginal effects?that is, PRO improvements?were found; in most cases they were insignificant, and in some cases they were contradictory. Conclusions: The main shortcoming of this kind of study is the lack of methodological instruments for reliable measurements. Furthermore, some patients who participate in online communities or interact with peers via Internet do not expect to measure changes in their PROs. If cancer survivors want to meet other survivors and share information or get support, online communities can be a trustworthy and reliable platform to facilitate opportunities or possibilities to make this happen. UR - http://cancer.jmir.org/2017/2/e15/ UR - http://dx.doi.org/10.2196/cancer.7312 UR - http://www.ncbi.nlm.nih.gov/pubmed/28958985 ID - info:doi/10.2196/cancer.7312 ER - TY - JOUR AU - Gopalsamy, Rahul AU - Semenov, Alexander AU - Pasiliao, Eduardo AU - McIntosh, Scott AU - Nikolaev, Alexander PY - 2017/08/29 TI - Engagement as a Driver of Growth of Online Health Forums: Observational Study JO - J Med Internet Res SP - e304 VL - 19 IS - 8 KW - online health forum KW - online health community KW - engagement KW - engagement capacity KW - superuser KW - eHealth KW - social network analysis N2 - Background: The emerging research on nurturing the growth of online communities posits that it is in part attributed to network effects, wherein every increase in the volume of user-generated content increases the value of the community in the eyes of its potential new members. The recently introduced metric engagement capacity offers a means of quantitatively assessing the ability of online platform users to engage each other into generating content; meanwhile, the quantity engagement value is useful for quantifying communication-based platform use. If the claim that higher engagement leads to accelerated growth holds true for online health forums (OHFs), then engagement tracking should become an important tool in the arsenal of OHF managers. Indeed, it might allow for quantifying the ability of an OHF to exploit network effects, thus predicting the OHF?s future success. Objective: This study aimed to empirically analyze the relationship between internal OHF use (quantified using engagement measurement), and external growth. Methods: We collected data from 7 OHFs posted between the years 1999 and 2016. Longitudinal analyses were conducted by evaluating engagement in the OHFs over time. We analyzed 2-way causality effects between the engagement value and metrics evaluating OHF growth using Granger causality tests. User activity metrics per week were correlated with engagement metrics, followed by linear regression analyses. Results: Observational data showed a 1-way causal relationship between the OHF engagement value and reach (P=.02). We detected a 2-way causal relationship between the engagement value and delurking, with further analysis indicating that the engagement value was more likely to cause delurking (P<.001 with lag 2; for the reverse hypothesis, P=.01 with lag 2). Users who engaged each other more were more likely (up to 14 times, depending on how much one user engaged another) to develop personal connections. Finally, we found that the more engaging an OHF user was in a given week, the more likely (up to 2 times, depending on their ability to engage others) they were to remain active in the OHF in the following week. Conclusions: This study supports the claim that network effects play an important role in accelerating OHF growth, opening the door to exploiting these effects in calculated ways. In such efforts, engagement metrics can be used to monitor the ?health? of an OHF and to identify the users most important to its success. UR - http://www.jmir.org/2017/8/e304/ UR - http://dx.doi.org/10.2196/jmir.7249 UR - http://www.ncbi.nlm.nih.gov/pubmed/28851677 ID - info:doi/10.2196/jmir.7249 ER - TY - JOUR AU - Prescott, Julie AU - Hanley, Terry AU - Ujhelyi, Katalin PY - 2017/08/02 TI - Peer Communication in Online Mental Health Forums for Young People: Directional and Nondirectional Support JO - JMIR Ment Health SP - e29 VL - 4 IS - 3 KW - adolescence KW - Internet KW - social media, mental health KW - qualitative research N2 - Background: The Internet has the potential to help young people by reducing the stigma associated with mental health and enabling young people to access services and professionals which they may not otherwise access. Online support can empower young people, help them develop new online friendships, share personal experiences, communicate with others who understand, provide information and emotional support, and most importantly help them feel less alone and normalize their experiences in the world. Objective: The aim of the research was to gain an understanding of how young people use an online forum for emotional and mental health issues. Specifically, the project examined what young people discuss and how they seek support on the forum (objective 1). Furthermore, it looked at how the young service users responded to posts to gain an understanding of how young people provided each other with peer-to-peer support (objective 2). Methods: Kooth is an online counseling service for young people aged 11-25 years and experiencing emotional and mental health problems. It is based in the United Kingdom and provides support that is anonymous, confidential, and free at the point of delivery. Kooth provided the researchers with all the online forum posts between a 2-year period, which resulted in a dataset of 622 initial posts and 3657 initial posts with responses. Thematic analysis was employed to elicit key themes from the dataset. Results: The findings support the literature that online forums provide young people with both informational and emotional support around a wide array of topics. The findings from this large dataset also reveal that this informational or emotional support can be viewed as directive or nondirective. The nondirective approach refers to when young people provide others with support by sharing their own experiences. These posts do not include explicit advice to act in a particular way, but the sharing process is hoped to be of use to the poster. The directive approach, in contrast, involves individuals making an explicit suggestion of what they believe the poster should do. Conclusions: This study adds to the research exploring what young people discuss within online forums and provides insights into how these communications take place. Furthermore, it highlights the challenge that organizations may encounter in mediating support that is multidimensional in nature (informational-emotional, directive-nondirective). UR - http://mental.jmir.org/2017/3/e29/ UR - http://dx.doi.org/10.2196/mental.6921 UR - http://www.ncbi.nlm.nih.gov/pubmed/28768607 ID - info:doi/10.2196/mental.6921 ER - TY - JOUR AU - Choi, Min-Je AU - Kim, Sung-Hee AU - Lee, Sukwon AU - Kwon, Chul Bum AU - Yi, Soo Ji AU - Choo, Jaegul AU - Huh, Jina PY - 2017/08/02 TI - Toward Predicting Social Support Needs in Online Health Social Networks JO - J Med Internet Res SP - e272 VL - 19 IS - 8 KW - online health social network KW - machine learning KW - gradient boosting trees KW - prediction models KW - social media KW - online health community N2 - Background: While online health social networks (OHSNs) serve as an effective platform for patients to fulfill their various social support needs, predicting the needs of users and providing tailored information remains a challenge. Objective: The objective of this study was to discriminate important features for identifying users? social support needs based on knowledge gathered from survey data. This study also provides guidelines for a technical framework, which can be used to predict users? social support needs based on raw data collected from OHSNs. Methods: We initially conducted a Web-based survey with 184 OHSN users. From this survey data, we extracted 34 features based on 5 categories: (1) demographics, (2) reading behavior, (3) posting behavior, (4) perceived roles in OHSNs, and (5) values sought in OHSNs. Features from the first 4 categories were used as variables for binary classification. For the prediction outcomes, we used features from the last category: the needs for emotional support, experience-based information, unconventional information, and medical facts. We compared 5 binary classifier algorithms: gradient boosting tree, random forest, decision tree, support vector machines, and logistic regression. We then calculated the scores of the area under the receiver operating characteristic (ROC) curve (AUC) to understand the comparative effectiveness of the used features. Results: The best performance was AUC scores of 0.89 for predicting users seeking emotional support, 0.86 for experience-based information, 0.80 for unconventional information, and 0.83 for medical facts. With the gradient boosting tree as our best performing model, we analyzed the strength of individual features in predicting one?s social support need. Among other discoveries, we found that users seeking emotional support tend to post more in OHSNs compared with others. Conclusions: We developed an initial framework for automatically predicting social support needs in OHSNs using survey data. Future work should involve nonsurvey data to evaluate the feasibility of the framework. Our study contributes to providing personalized social support in OHSNs. UR - http://www.jmir.org/2017/8/e272/ UR - http://dx.doi.org/10.2196/jmir.7660 UR - http://www.ncbi.nlm.nih.gov/pubmed/28768609 ID - info:doi/10.2196/jmir.7660 ER - TY - JOUR AU - Lavorgna, Luigi AU - Russo, Antonio AU - De Stefano, Manuela AU - Lanzillo, Roberta AU - Esposito, Sabrina AU - Moshtari, Fatemeh AU - Rullani, Francesco AU - Piscopo, Kyrie AU - Buonanno, Daniela AU - Brescia Morra, Vincenzo AU - Gallo, Antonio AU - Tedeschi, Gioacchino AU - Bonavita, Simona PY - 2017/07/14 TI - Health-Related Coping and Social Interaction in People with Multiple Sclerosis Supported by a Social Network: Pilot Study With a New Methodological Approach JO - Interact J Med Res SP - e10 VL - 6 IS - 2 KW - social media KW - eHealth KW - digital health KW - multiple sclerosis KW - social network KW - Web medicine N2 - Background: Social media are a vital link for people with health concerns who find in Web communities a valid and comforting source for information exchange, debate, and knowledge enrichment. This aspect is important for people affected by chronic diseases like multiple sclerosis (MS), who are very well informed about the disease but are vulnerable to hopes of being cured or saved by therapies whose efficacy is not always scientifically proven. To improve health-related coping and social interaction for people with MS, we created an MS social network (SMsocialnetwork.com) with a medical team constantly online to intervene promptly when false or inappropriate medical information are shared. Objective: The goal of this study was to assess the impact of SMsocialnetwork.com on the health-related coping and social interaction of people with MS by analyzing areas of interest through a Web-based survey. Methods: Referring to previous marketing studies analyzing the online platform?s role in targeted health care, we conducted a 39-item Web-based survey. We then performed a construct validation procedure using a factorial analysis, gathering together like items of the survey related to different areas of interest such as utility, proximity, sharing, interaction, solving uncertainty, suggestion attitude, and exploration. Results: We collected 130 Web-based surveys. The areas of interest analysis demonstrated that the users positively evaluated SMsocialnetwork.com to obtain information, approach and solve problems, and to make decisions (utility: median 4.2); improve feeling of closeness (proximity: median 5); catalyze relationships and text general personal opinions (sharing: median 5.6); get in touch with other users to receive innovative, effective, and practical solutions (interaction, solving uncertainty, and suggestion attitude medians were respectively: 4.1, 3, and 3); and share information about innovative therapeutic approaches and treatment options (suggestion attitude: median: 3.3). Conclusions: SMsocialnetwork.com was perceived by users to be a useful tool to support health-related coping and social interaction, and may suggest a new kind of therapeutic alliance between physicians and people with MS. UR - http://www.i-jmr.org/2017/2/e10/ UR - http://dx.doi.org/10.2196/ijmr.7402 UR - http://www.ncbi.nlm.nih.gov/pubmed/28710056 ID - info:doi/10.2196/ijmr.7402 ER - TY - JOUR AU - Huesch, Marco AU - Chetlen, Alison AU - Segel, Joel AU - Schetter, Susann PY - 2017/06/09 TI - Frequencies of Private Mentions and Sharing of Mammography and Breast Cancer Terms on Facebook: A Pilot Study JO - J Med Internet Res SP - e201 VL - 19 IS - 6 KW - Facebook KW - online social network KW - social media KW - breast cancer screening KW - mammography KW - user comments KW - websites KW - links N2 - Background: The most popular social networking site in the United States is Facebook, an online forum where circles of friends create, share, and interact with each other?s content in a nonpublic way. Objective: Our objectives were to understand (1) the most commonly used terms and phrases relating to breast cancer screening, (2) the most commonly shared website links that other women interacted with, and (3) the most commonly shared website links, by age groups. Methods: We used a novel proprietary tool from Facebook to analyze all of the more than 1.7 million unique interactions (comments on stories, reshares, and emoji reactions) and stories associated with breast cancer screening keywords that were generated by more than 1.1 million unique female Facebook users over the 1 month between November 15 and December 15, 2016. We report frequency distributions of the most popular shared Web content by age group and keywords. Results: On average, each of 59,000 unique stories during the month was reshared 1.5 times, commented on nearly 8 times, and reacted to more than 20 times by other users. Posted stories were most often authored by women aged 45-54 years. Users shared, reshared, commented on, and reacted to website links predominantly to e-commerce sites (12,200/1.7 million, 36% of all the most popular links), celebrity news (n=8800, 26%), and major advocacy organizations (n=4900, 15%; almost all accounted for by the American Cancer Society breast cancer site). Conclusions: On Facebook, women shared and reacted to links to commercial and informative websites regarding breast cancer and screening. This information could inform patient outreach regarding breast cancer screening, indirectly through better understanding of key issues, and directly through understanding avenues for paid messaging to women authoring and reacting to content in this space. UR - http://www.jmir.org/2017/6/e201/ UR - http://dx.doi.org/10.2196/jmir.7508 UR - http://www.ncbi.nlm.nih.gov/pubmed/28600279 ID - info:doi/10.2196/jmir.7508 ER - TY - JOUR AU - Lovatt, Melanie AU - Bath, A. Peter AU - Ellis, Julie PY - 2017/05/23 TI - Development of Trust in an Online Breast Cancer Forum: A Qualitative Study JO - J Med Internet Res SP - e175 VL - 19 IS - 5 KW - trust KW - online information sharing KW - breast cancer KW - online health communities KW - qualitative research N2 - Background: Online health forums provide peer support for a range of medical conditions including life-threatening and terminal illnesses. Trust is an important component of peer-to-peer support, although relatively little is known about how trust forms within online health forums. Objective: The aim of this paper is to examine how trust develops and influences sharing among users of an online breast cancer forum. Methods: An interpretive qualitative approach was adopted. Data were collected from forum posts from 135 threads on 9 boards on the UK charity, Breast Cancer Care (BCC). Semistructured interviews were conducted with 14 BCC forum users. Both datasets were analyzed thematically using Braun and Clarke?s approach and combined to triangulate analysis. Results: Trust operates in 3 dimensions, structural, relational, and temporal, and these intersect with each other and do not operate in isolation. The structural dimension relates to how the affordances and formal rules of the site affected trust. The relational dimension refers to how trust was necessarily experienced in interactions with other forum users: it emerged within relationships and was a social phenomenon. The temporal dimension relates to how trust changed over time and was influenced by the length of time users spent on the forum. Conclusions: Trust is a process that changes over time and which is influenced by structural features of the forum, as well as informal but collectively understood relational interactions among forum users. The study provides a better understanding of how the intersecting structural, relational, and temporal aspects that support the development of trust facilitate sharing in online environments. These findings will help organizations developing online health forums. UR - http://www.jmir.org/2017/5/e175/ UR - http://dx.doi.org/10.2196/jmir.7471 UR - http://www.ncbi.nlm.nih.gov/pubmed/28536093 ID - info:doi/10.2196/jmir.7471 ER - TY - JOUR AU - Kim, Jung Sunny AU - Marsch, A. Lisa AU - Brunette, F. Mary AU - Dallery, Jesse PY - 2017/05/23 TI - Harnessing Facebook for Smoking Reduction and Cessation Interventions: Facebook User Engagement and Social Support Predict Smoking Reduction JO - J Med Internet Res SP - e168 VL - 19 IS - 5 KW - social media KW - social support KW - behavior and behavior mechanisms KW - smoking cessation KW - persuasive communication KW - social networking KW - technology KW - health promotion N2 - Background: Social media technologies offer a novel opportunity for scalable health interventions that can facilitate user engagement and social support, which in turn may reinforce positive processes for behavior change. Objective: By using principles from health communication and social support literature, we implemented a Facebook group?based intervention that targeted smoking reduction and cessation. This study hypothesized that participants? engagement with and perceived social support from our Facebook group intervention would predict smoking reduction. Methods: We recruited 16 regular smokers who live in the United States and who were motivated in quitting smoking at screening. We promoted message exposure as well as engagement and social support systems throughout the intervention. For message exposure, we posted prevalidated, antismoking messages (such as national antismoking campaigns) on our smoking reduction and cessation Facebook group. For engagement and social support systems, we delivered a high degree of engagement and social support systems during the second and third week of the intervention and a low degree of engagement and social support systems during the first and fourth week. A total of six surveys were conducted via Amazon Mechanical Turk (MTurk) at baseline on a weekly basis and at a 2-week follow-up. Results: Of the total 16 participants, most were female (n=13, 81%), white (n=15, 94%), and between 25 and 50 years of age (mean 34.75, SD 8.15). There was no study attrition throughout the 6-time-point baseline, weekly, and follow-up surveys. We generated Facebook engagement and social support composite scores (mean 19.19, SD 24.35) by combining the number of likes each participant received and the number of comments or wall posts each participant posted on our smoking reduction and cessation Facebook group during the intervention period. The primary outcome was smoking reduction in the past 7 days measured at baseline and at the two-week follow-up. Compared with the baseline, participants reported smoking an average of 60.56 fewer cigarettes per week (SD 38.83) at the follow-up, and 4 participants out of 16 (25%) reported 7-day point prevalence smoking abstinence at the follow-up. Adjusted linear regression models revealed that a one-unit increase in the Facebook engagement and social support composite scores predicted a 0.56-unit decrease in cigarettes smoked per week (standard error =.24, P=.04, 95% CI 0.024-1.09) when baseline readiness to quit, gender, and baseline smoking status were controlled (F4, 11=8.85, P=.002). Conclusions: This study is the first Facebook group?based intervention that systemically implemented health communication strategies and engagement and social support systems to promote smoking reduction and cessation. Our findings imply that receiving one like or posting on the Facebook-based intervention platform predicted smoking approximately one less cigarette in the past 7 days, and that interventions should facilitate user interactions to foster user engagement and social support. UR - http://www.jmir.org/2017/5/e168/ UR - http://dx.doi.org/10.2196/jmir.6681 UR - http://www.ncbi.nlm.nih.gov/pubmed/28536096 ID - info:doi/10.2196/jmir.6681 ER - TY - JOUR AU - Wärnestål, Pontus AU - Svedberg, Petra AU - Lindberg, Susanne AU - Nygren, M. Jens PY - 2017/05/18 TI - Effects of Using Child Personas in the Development of a Digital Peer Support Service for Childhood Cancer Survivors JO - J Med Internet Res SP - e161 VL - 19 IS - 5 KW - peer KW - childhood KW - cancer KW - survivor KW - participation KW - user experience KW - service design N2 - Background: Peer support services have the potential to support children who survive cancer by handling the physical, mental, and social challenges associated with survival and return to everyday life. Involving the children themselves in the design process allows for adapting services to authentic user behaviors and goals. As there are several challenges that put critical requirements on a user-centered design process, we developed a design method based on personas adapted to the particular needs of children that promotes health and handles a sensitive design context. Objective: The purpose of this study was to evaluate the effects of using child personas in the development of a digital peer support service for childhood cancer survivors. Methods: The user group?s needs and behaviors were characterized based on cohort data and literature, focus group interviews with childhood cancer survivors (n=15, 8-12 years), stakeholder interviews with health care professionals and parents (n=13), user interviews, and observations. Data were interpreted and explained together with childhood cancer survivors (n=5) in three explorative design workshops and a validation workshop with children (n=7). Results: We present findings and insights on how to codesign child personas in the context of developing digital peer support services with childhood cancer survivors. The work resulted in three primary personas that model the behaviors, attitudes, and goals of three user archetypes tailored for developing health-promoting services in this particular use context. Additionally, we also report on the effects of using these personas in the design of a digital peer support service called Give Me a Break. Conclusions: By applying our progressive steps of data collection and analysis, we arrive at authentic child-personas that were successfully used to design and develop health-promoting services for children in vulnerable life stages. The child-personas serve as effective collaboration and communication aids for both internal and external purposes. UR - http://www.jmir.org/2017/5/e161/ UR - http://dx.doi.org/10.2196/jmir.7175 UR - http://www.ncbi.nlm.nih.gov/pubmed/28526663 ID - info:doi/10.2196/jmir.7175 ER - TY - JOUR AU - Lewinski, A. Allison AU - Anderson, A. Ruth AU - Vorderstrasse, A. Allison AU - Fisher, B. Edwin AU - Pan, Wei AU - Johnson, M. Constance PY - 2017/04/24 TI - Analyzing Unstructured Communication in a Computer-Mediated Environment for Adults With Type 2 Diabetes: A Research Protocol JO - JMIR Res Protoc SP - e65 VL - 6 IS - 4 KW - diabetes type 2 KW - social support KW - adults KW - Internet KW - peer support KW - self-management KW - mixed methods KW - social interaction KW - secondary analysis N2 - Background: Individuals with type 2 diabetes have an increased risk for comorbidities such as heart disease, lower limb amputations, stroke, and renal failure. Multiple factors influence development of complications in a person living with type 2 diabetes; however, an individual?s self-management behaviors may delay the onset of, or lessen the severity of, these complications. Social support provides personal, informal advice and knowledge that helps individuals initiate and sustain self-management and adherence. Objective: Our aim was to gain an understanding of type 2 diabetes social interaction in a virtual environment, one type of computer-mediated environment (CME), and the social support characteristics that increase and sustain self-management in adults living with chronic illness. Methods: This study is a secondary analysis of longitudinal data collected in a CME study, Second Life Impacts Diabetes Education & Self-Management (1R21-LM010727-01). This virtual environment replicated a real-life community where 6 months of naturalistic synchronous voice conversations, emails, and text chats were recorded among participants and providers. This analysis uses a mixed-methods approach to explore and compare qualitative and quantitative findings. This analysis is guided by two theories: Strong/Weak Ties Theory and Social Penetration Theory. Qualitative data will be analyzed using content analysis, and we will complete descriptive statistics on the quantified variables (eg, average number of ties). Institutional review board approval was obtained in June 2016. Results: This study is in progress. Conclusions: Interventions provided through virtual environments are a promising solution to increasing self-management practices. However, little is known of the depth, breadth, and quality of social support that is exchanged and how interaction supports self-management and relates to health outcomes. This study will provide knowledge that will help guide clinical practice and policy to enhance social support for chronic illness via the Internet. UR - http://www.researchprotocols.org/2017/4/e65/ UR - http://dx.doi.org/10.2196/resprot.7442 UR - http://www.ncbi.nlm.nih.gov/pubmed/28438726 ID - info:doi/10.2196/resprot.7442 ER - TY - JOUR AU - Wang, Xi AU - Zhao, Kang AU - Street, Nick PY - 2017/04/24 TI - Analyzing and Predicting User Participations in Online Health Communities: A Social Support Perspective JO - J Med Internet Res SP - e130 VL - 19 IS - 4 KW - social support KW - machine learning KW - community networks KW - patient engagement KW - prediction N2 - Background: Online health communities (OHCs) have become a major source of social support for people with health problems. Members of OHCs interact online with similar peers to seek, receive, and provide different types of social support, such as informational support, emotional support, and companionship. As active participations in an OHC are beneficial to both the OHC and its users, it is important to understand factors related to users? participations and predict user churn for user retention efforts. Objective: This study aimed to analyze OHC users? Web-based interactions, reveal which types of social support activities are related to users? participation, and predict whether and when a user will churn from the OHC. Methods: We collected a large-scale dataset from a popular OHC for cancer survivors. We used text mining techniques to decide what kinds of social support each post contained. We illustrated how we built text classifiers for 5 different social support categories: seeking informational support (SIS), providing informational support (PIS), seeking emotional support (SES), providing emotional support (PES), and companionship (COM). We conducted survival analysis to identify types of social support related to users? continued participation. Using supervised machine learning methods, we developed a predictive model for user churn. Results: Users? behaviors to PIS, SES, and COM had hazard ratios significantly lower than 1 (0.948, 0.972, and 0.919, respectively) and were indicative of continued participations in the OHC. The churn prediction model based on social support activities offers accurate predictions on whether and when a user will leave the OHC. Conclusions: Detecting different types of social support activities via text mining contributes to better understanding and prediction of users? participations in an OHC. The outcome of this study can help the management and design of a sustainable OHC via more proactive and effective user retention strategies. UR - http://www.jmir.org/2017/4/e130/ UR - http://dx.doi.org/10.2196/jmir.6834 UR - http://www.ncbi.nlm.nih.gov/pubmed/28438725 ID - info:doi/10.2196/jmir.6834 ER - TY - JOUR AU - Lu, Yingjie AU - Wu, Yang AU - Liu, Jingfang AU - Li, Jia AU - Zhang, Pengzhu PY - 2017/04/07 TI - Understanding Health Care Social Media Use From Different Stakeholder Perspectives: A Content Analysis of an Online Health Community JO - J Med Internet Res SP - e109 VL - 19 IS - 4 KW - health care social media KW - stakeholder analysis KW - topic analysis KW - sentiment analysis N2 - Background: Health care social media used for health information exchange and emotional communication involves different types of users, including patients, caregivers, and health professionals. However, it is difficult to identify different stakeholders because user identification data are lacking due to privacy protection and proprietary interests. Therefore, identifying the concerns of different stakeholders and how they use health care social media when confronted with huge amounts of health-related messages posted by users is a critical problem. Objective: We aimed to develop a new content analysis method using text mining techniques applied in health care social media to (1) identify different health care stakeholders, (2) determine hot topics of concern, and (3) measure sentiment expression by different stakeholders. Methods: We collected 138,161 messages posted by 39,606 members in lung cancer, diabetes, and breast cancer forums in the online community MedHelp.org over 10 years (January 2007 to October 2016) as experimental data. We used text mining techniques to process text data to identify different stakeholders and determine health-related hot topics, and then analyzed sentiment expression. Results: We identified 3 significantly different stakeholder groups using expectation maximization clustering (3 performance metrics: Rand=0.802, Jaccard=0.393, Fowlkes-Mallows=0.537; P<.001), in which patients (24,429/39,606, 61.68%) and caregivers (12,232/39,606, 30.88%) represented the majority of the population, in contrast to specialists (2945/39,606, 7.43%). We identified 5 significantly different health-related topics: symptom, examination, drug, procedure, and complication (Rand=0.783, Jaccard=0.369, Fowlkes-Mallows=0.495; P<.001). Patients were concerned most about symptom topics related to lung cancer (536/1657, 32.34%), drug topics related to diabetes (1883/5904, 31.89%), and examination topics related to breast cancer (8728/23,934, 36.47%). By comparison, caregivers were more concerned about drug topics related to lung cancer (300/2721, 11.03% vs 109/1657, 6.58%), procedure topics related to breast cancer (3952/13,954, 28.32% vs 5822/23,934, 24.33%), and complication topics (4449/25,701, 17.31% vs 4070/31,495, 12.92%). In addition, patients (9040/36,081, 25.05%) were more likely than caregivers (2659/18,470, 14.39%) and specialists (17,943/83,610, 21.46%) to express their emotions. However, patients? sentiment intensity score (2.46) was lower than those of caregivers (4.66) and specialists (5.14). In particular, for caregivers, negative sentiment scores were higher than positive scores (2.56 vs 2.18), with the opposite among specialists (2.62 vs 2.46). Overall, the proportion of negative messages was greater than that of positive messages related to symptom, complication, and examination. The pattern was opposite for drug and procedure topics. A trend analysis showed that patients and caregivers gradually changed their emotional state in a positive direction. Conclusions: The hot topics of interest and sentiment expression differed significantly among different stakeholders in different disease forums. These findings could help improve social media services to facilitate diverse stakeholder engagement for health information sharing and social interaction more effectively. UR - http://www.jmir.org/2017/4/e109/ UR - http://dx.doi.org/10.2196/jmir.7087 UR - http://www.ncbi.nlm.nih.gov/pubmed/28389418 ID - info:doi/10.2196/jmir.7087 ER - TY - JOUR AU - Hayat, (Zack) Tsahi AU - Brainin, Esther AU - Neter, Efrat PY - 2017/03/30 TI - With Some Help From My Network: Supplementing eHealth Literacy With Social Ties JO - J Med Internet Res SP - e98 VL - 19 IS - 3 KW - eHealth literacy KW - consumer health information KW - outcomes assessment KW - ethnicity N2 - Background: eHealth literacy is defined as the ability to seek, find, understand, and appraise health information from electronic sources and apply knowledge gained to addressing or solving a health problem. Previous research has shown high reliance on both online and face-to-face interpersonal sources when sharing and receiving health information. Objective: In this paper, we examine these interpersonal sources and their interplay with respondents? eHealth literacy and perceived health outcomes. Specifically, we look at how the relationship between eHealth literacy and health outcomes is moderated by (1) finding help while performing online activities, (2) finding others with similar health concerns online, and (3) the importance of finding others with similar health concerns for people from ethnic minorities, specifically Palestinian citizens of Israel versus Israeli Jews. Methods: We used a nationally representative random-digit dial telephone household survey of an Israeli adult population (age ?21 years, N=819). The collected data were analyzed using two regression models. The first examined how the correlation between eHealth literacy and perceived outcomes was moderated by the availability of help. The second examined how the correlation between eHealth literacy and perceived outcomes was moderated by finding others with similar health concerns and by ethnicity. Results: Respondents with low eHealth literacy who were able to recruit help when performing online activities demonstrated higher perceived health outcomes compared to similar respondents who did not find help. Respondents with low eHealth literacy, who were able to find others with similar health concerns (online), demonstrated higher perceived health outcomes when compared to similar respondents who did not find others with similar health concerns. Finally, finding similar others online was more helpful in enhancing health outcomes for ethnic minorities; Palestinian citizens of Israel gained more health benefits by finding similar others compared to Israeli Jews. Conclusions: Although the availability of help and the notion of ethnicity have been discussed extensively within the context of social capital and health, our findings offer initial evidence for the relevancy of these concepts when studying individuals? eHealth literacy. Specifically, our findings enable a better understanding of the role of social ties and ethnicity in moderating the interplay between eHealth literacy and perceived health outcomes. Given the increased importance of eHealth information, our findings enhance understanding of how social ties can potentially compensate for low eHealth literacy. UR - http://www.jmir.org/2017/3/e98/ UR - http://dx.doi.org/10.2196/jmir.6472 UR - http://www.ncbi.nlm.nih.gov/pubmed/28360024 ID - info:doi/10.2196/jmir.6472 ER - TY - JOUR AU - Park, Albert AU - Conway, Mike PY - 2017/03/20 TI - Longitudinal Changes in Psychological States in Online Health Community Members: Understanding the Long-Term Effects of Participating in an Online Depression Community JO - J Med Internet Res SP - e71 VL - 19 IS - 3 KW - mental health KW - depression KW - consumer health information KW - informatics KW - information science KW - social support KW - psychosocial support system KW - community networks KW - self-help groups KW - communications media N2 - Background: Major depression is a serious challenge at both the individual and population levels. Although online health communities have shown the potential to reduce the symptoms of depression, emotional contagion theory suggests that negative emotion can spread within a community, and prolonged interactions with other depressed individuals has potential to worsen the symptoms of depression. Objective: The goals of our study were to investigate longitudinal changes in psychological states that are manifested through linguistic changes in depression community members who are interacting with other depressed individuals. Methods: We examined emotion-related language usages using the Linguistic Inquiry and Word Count (LIWC) program for each member of a depression community from Reddit. To measure the changes, we applied linear least-squares regression to the LIWC scores against the interaction sequence for each member. We measured the differences in linguistic changes against three online health communities focusing on positive emotion, diabetes, and irritable bowel syndrome. Results: On average, members of an online depression community showed improvement in 9 of 10 prespecified linguistic dimensions: ?positive emotion,? ?negative emotion,? ?anxiety,? ?anger,? ?sadness,? ?first person singular,? ?negation,? ?swear words,? and ?death.? Moreover, these members improved either significantly or at least as much as members of other online health communities. Conclusions: We provide new insights into the impact of prolonged participation in an online depression community and highlight the positive emotion change in members. The findings of this study should be interpreted with caution, because participating in an online depression community is not the sole factor for improvement or worsening of depressive symptoms. Still, the consistent statistical results including comparative analyses with different communities could indicate that the emotion-related language usage of depression community members are improving either significantly or at least as much as members of other online communities. On the basis of these findings, we contribute practical suggestions for designing online depression communities to enhance psychosocial benefit gains for members. We consider these results to be an important step toward a better understanding of the impact of prolonged participation in an online depression community, in addition to providing insights into the long-term psychosocial well-being of members. UR - http://www.jmir.org/2017/3/e71/ UR - http://dx.doi.org/10.2196/jmir.6826 UR - http://www.ncbi.nlm.nih.gov/pubmed/28320692 ID - info:doi/10.2196/jmir.6826 ER - TY - JOUR AU - Petri?, Gregor AU - Atanasova, Sara AU - Kamin, Tanja PY - 2017/03/13 TI - Impact of Social Processes in Online Health Communities on Patient Empowerment in Relationship With the Physician: Emergence of Functional and Dysfunctional Empowerment JO - J Med Internet Res SP - e74 VL - 19 IS - 3 KW - physician-patient relations KW - patient empowerment KW - patient compliance KW - conflict KW - online health community KW - eHealth literacy KW - cross-sectional survey N2 - Background: Substantial research demonstrates the importance of online health communities (OHCs) for patient empowerment, although the impact on the patient-physician relationship is understudied. Patient empowerment also occurs in relationship with the physician, but studies of OHCs mostly disregard this. The question also remains about the nature and consequences of this empowerment, as it might be based on the limited validity of some information in OHCs. Objective: The main purpose of this study was to examine the impact of social processes in OHCs (information exchange with users and health professional moderators, social support, finding meaning, and self-expressing) on functional and dysfunctional patient empowerment in relationship with the physician (PERP). This impact was investigated by taking into account moderating role of eHealth literacy and physician?s paternalism. Method: An email list?based Web survey on a simple random sample of 25,000 registered users of the most popular general OHC in Slovenia was conducted. A total of 1572 respondents completed the survey. The analyses were conducted on a subsample of 591 regular users, who had visited a physician at least once in the past 2 years. To estimate the impact of social processes in OHC on functional and dysfunctional PERP, we performed a series of hierarchical regression analyses. To determine the moderating role of eHealth literacy and the perceived physician characteristics, interactions were included in the regression analyses. Results: The mean age of the respondents in the sample was 37.6 years (SD 10.3) and 83.3% were females. Factor analyses of the PERP revealed a five-factor structure with acceptable fit (root-mean-square error of approximation =.06). Most important results are that functional self-efficacy is positively predicted by information exchange with health professional moderators (beta=.12, P=.02), information exchange with users (beta=.12, P=.05), and giving social support (beta=.13, P=.02), but negatively predicted with receiving social support (beta=?.21, P<.001). Functional control is also predicted by information exchange with health professional moderators (beta=.16, P=.005). Dysfunctional control and competence are inhibited by information exchanges with health professionals (beta=?.12, P=.03), whereas dysfunctional self-efficacy is inhibited by self-expressing (beta=?.12, P=.05). The process of finding meaning likely leads to the development of dysfunctional competences and control if the physician is perceived to be paternalistic (beta=.14, P=.03). Under the condition of high eHealth literacy, the process of finding meaning will inhibit the development of dysfunctional competences and control (beta=?.17, P=.01). Conclusions: Social processes in OHCs do not have a uniform impact on PERP. This impact is moderated by eHealth literacy and physician paternalism. Exchanging information with health professional moderators in OHCs is the most important factor for stimulating functional PERP as well as diminishing dysfunctional PERP. Social support in OHCs plays an ambiguous role, often making patients behave in a strategic, uncooperative way toward physicians. UR - http://www.jmir.org/2017/3/e74/ UR - http://dx.doi.org/10.2196/jmir.7002 UR - http://www.ncbi.nlm.nih.gov/pubmed/28288953 ID - info:doi/10.2196/jmir.7002 ER - TY - JOUR AU - Meng, Jingbo AU - Peng, Wei AU - Shin, Yun Soo AU - Chung, Minwoong PY - 2017/03/06 TI - Online Self-Tracking Groups to Increase Fruit and Vegetable Intake: A Small-Scale Study on Mechanisms of Group Effect on Behavior Change JO - J Med Internet Res SP - e63 VL - 19 IS - 3 KW - online support group KW - quantified self KW - fruit and vegetable consumption KW - social comparison KW - similarity KW - social modeling N2 - Background: Web-based interventions with a self-tracking component have been found to be effective in promoting adults? fruit and vegetable consumption. However, these interventions primarily focus on individual- rather than group-based self-tracking. The rise of social media technologies enables sharing and comparing self-tracking records in a group context. Therefore, we developed an online group-based self-tracking program to promote fruit and vegetable consumption. Objective: This study aims to examine (1) the effectiveness of online group-based self-tracking on fruit and vegetable consumption and (2) characteristics of online self-tracking groups that make the group more effective in promoting fruit and vegetable consumption in early young adults. Methods: During a 4-week Web-based experiment, 111 college students self-tracked their fruit and vegetable consumption either individually (ie, the control group) or in an online group characterized by a 2 (demographic similarity: demographically similar vs demographically diverse) × 2 (social modeling: incremental change vs ideal change) experimental design. Each online group consisted of one focal participant and three confederates as group members or peers, who had their demographics and fruit and vegetable consumption manipulated to create the four intervention groups. Self-reported fruit and vegetable consumption were assessed using the Food Frequency Questionnaire at baseline and after the 4-week experiment. Results: Participants who self-tracked their fruit and vegetable consumption collectively with other group members consumed more fruits and vegetables than participants who self-tracked individually (P=.01). The results did not show significant main effects of demographic similarity (P=.32) or types of social modeling (P=.48) in making self-tracking groups more effective in promoting fruit and vegetable consumption. However, additional analyses revealed the main effect of performance discrepancy (ie, difference in fruit and vegetable consumption between a focal participant and his/her group members during the experiment), such that participants who had a low performance discrepancy from other group members had greater fruit and vegetable consumption than participants who had a high performance discrepancy from other group members (P=.002). A mediation test showed that low performance discrepancy led to greater downward contrast (b=?0.78, 95% CI ?2.44 to ?0.15), which in turn led to greater fruit and vegetable consumption. Conclusions: Online self-tracking groups were more effective than self-tracking alone in promoting fruit and vegetable consumption for early young adults. Low performance discrepancy from other group members lead to downward contrast, which in turn increased participants? fruit and vegetable consumption over time. The study highlighted social comparison processes in online groups that allow for sharing personal health information. Lastly, given the small scale of this study, nonsignificant results with small effect sizes might be subject to bias. UR - http://www.jmir.org/2017/3/e63/ UR - http://dx.doi.org/10.2196/jmir.6537 UR - http://www.ncbi.nlm.nih.gov/pubmed/28264793 ID - info:doi/10.2196/jmir.6537 ER - TY - JOUR AU - Moore, Donna AU - Drey, Nicholas AU - Ayers, Susan PY - 2017/02/20 TI - Use of Online Forums for Perinatal Mental Illness, Stigma, and Disclosure: An Exploratory Model JO - JMIR Ment Health SP - e6 VL - 4 IS - 1 KW - Internet KW - social stigma KW - depression KW - postpartum KW - mood disorder KW - female N2 - Background: Perinatal mental illness is a global health concern; however, many women with the illness do not get the treatment they need to recover. Interventions that reduce the stigma around perinatal mental illness have the potential to enable women to disclose their symptoms to health care providers and consequently access treatment. There are many online forums for perinatal mental illness and thousands of women use them. Preliminary research suggests that online forums may promote help-seeking behavior, potentially because they have a role in challenging stigma. This study draws from these findings and theoretical concepts to present a model of forum use, stigma, and disclosure. Objective: This study tested a model that measured the mediating role of stigma between online forum use and disclosure of affective symptoms to health care providers. Methods: A Web-based survey of 200 women who were pregnant or had a child younger than 5 years and considered themselves to be experiencing psychological distress was conducted. Women were recruited through social media and questions measured forum usage, perinatal mental illness stigma, disclosure to health care providers, depression and anxiety symptoms, barriers to disclosure, and demographic information. Results: There was a significant positive indirect effect of length of forum use on disclosure of symptoms through internal stigma, b=0.40, bias-corrected and accelerated (BCa) 95% CI 0.13-0.85. Long-term forum users reported higher levels of internal stigma, and higher internal stigma was associated with disclosure of symptoms to health care providers when controlling for symptoms of depression and anxiety. Conclusions: Internal stigma mediates the relationship between length of forum use and disclosure to health care providers. Findings suggest that forums have the potential to enable women to recognize and reveal their internal stigma, which may in turn lead to greater disclosure of symptoms to health care providers. Clinicians could refer clients to trustworthy and moderated online forums that facilitate expression of perinatal mental illness stigma and promote disclosure to health care providers. UR - http://mental.jmir.org/2017/1/e6/ UR - http://dx.doi.org/10.2196/mental.5926 UR - http://www.ncbi.nlm.nih.gov/pubmed/28219879 ID - info:doi/10.2196/mental.5926 ER - TY - JOUR AU - van Mierlo, Trevor AU - Li, Xinlong AU - Hyatt, Douglas AU - Ching, T. Andrew PY - 2017/02/17 TI - Demographic and Indication-Specific Characteristics Have Limited Association With Social Network Engagement: Evidence From 24,954 Members of Four Health Care Support Groups JO - J Med Internet Res SP - e40 VL - 19 IS - 2 KW - econometric models KW - social networking KW - social support KW - self-help groups KW - data mining KW - Internet KW - regression analysis KW - forecasting KW - superusers N2 - Background: Digital health social networks (DHSNs) are widespread, and the consensus is that they contribute to wellness by offering social support and knowledge sharing. The success of a DHSN is based on the number of participants and their consistent creation of externalities through the generation of new content. To promote network growth, it would be helpful to identify characteristics of superusers or actors who create value by generating positive network externalities. Objective: The aim of the study was to investigate the feasibility of developing predictive models that identify potential superusers in real time. This study examined associations between posting behavior, 4 demographic variables, and 20 indication-specific variables. Methods: Data were extracted from the custom structured query language (SQL) databases of 4 digital health behavior change interventions with DHSNs. Of these, 2 were designed to assist in the treatment of addictions (problem drinking and smoking cessation), and 2 for mental health (depressive disorder, panic disorder). To analyze posting behavior, 10 models were developed, and negative binomial regressions were conducted to examine associations between number of posts, and demographic and indication-specific variables. Results: The DHSNs varied in number of days active (3658-5210), number of registrants (5049-52,396), number of actors (1085-8452), and number of posts (16,231-521,997). In the sample, all 10 models had low R2 values (.013-.086) with limited statistically significant demographic and indication-specific variables. Conclusions: Very few variables were associated with social network engagement. Although some variables were statistically significant, they did not appear to be practically significant. Based on the large number of study participants, variation in DHSN theme, and extensive time-period, we did not find strong evidence that demographic characteristics or indication severity sufficiently explain the variability in number of posts per actor. Researchers should investigate alternative models that identify superusers or other individuals who create social network externalities. UR - http://www.jmir.org/2017/2/e40/ UR - http://dx.doi.org/10.2196/jmir.6330 UR - http://www.ncbi.nlm.nih.gov/pubmed/28213340 ID - info:doi/10.2196/jmir.6330 ER - TY - JOUR AU - Gesser-Edelsburg, Anat AU - Shalayeva, Svetlana PY - 2017/02/03 TI - Internet as a Source of Long-Term and Real-Time Professional, Psychological, and Nutritional Treatment: A Qualitative Case Study Among Former Israeli Soviet Union Immigrants JO - J Med Internet Res SP - e33 VL - 19 IS - 2 KW - long-term care KW - real-time systems KW - online systems, health psychology KW - nutrition therapy KW - qualitative research KW - former Soviet Union immigrants N2 - Background: The Internet is considered to be an effective source of health information and consultation for immigrants. Nutritional interventions for immigrants have become increasingly common over the past few decades. However, each population of immigrants has specific needs. Understanding the factors influencing the success of nutrition programs among immigrants requires an examination of their attitudes and perceptions, as well as their cultural values. Objective: The purpose of this study was to examine perceptions of the Internet as a tool for long-term and ?real-time? professional, psychological, and nutritional treatment for immigrants from the former Soviet Union who immigrated to Israel (IIFSU) from 1990 to 2012. Methods: A sample of nutrition forum users (n=18) was interviewed and comments of 80 users were analyzed qualitatively in accordance with the grounded theory principles. Results: The results show that IIFSU perceive the Internet as a platform for long-term and ?real-time? dietary treatment and not just as an informative tool. IIFSU report benefits of online psychological support with professional dietary treatment. They attribute importance to cultural customization, which helps reduce barriers to intervention. Conclusions: In light of the results, when formulating nutritional programs, it is essential to have a specific understanding of immigrants? cultural characteristics and their patterns of Internet use concerning dietary care. UR - http://www.jmir.org/2017/2/e33/ UR - http://dx.doi.org/10.2196/jmir.7130 UR - http://www.ncbi.nlm.nih.gov/pubmed/28159729 ID - info:doi/10.2196/jmir.7130 ER - TY - JOUR AU - Bernecker, L. Samantha AU - Banschback, Kaitlin AU - Santorelli, D. Gennarina AU - Constantino, J. Michael PY - 2017/01/19 TI - A Web-Disseminated Self-Help and Peer Support Program Could Fill Gaps in Mental Health Care: Lessons From a Consumer Survey JO - JMIR Ment Health SP - e5 VL - 4 IS - 1 KW - computer-assisted instruction KW - eHealth KW - mental health KW - self care KW - self-help KW - peer support KW - social support N2 - Background: Self-guided mental health interventions that are disseminated via the Web have the potential to circumvent barriers to treatment and improve public mental health. However, self-guided interventions often fail to attract consumers and suffer from user nonadherence. Uptake of novel interventions could be improved by consulting consumers from the beginning of the development process in order to assess their interest and their preferences. Interventions can then be tailored using this feedback to optimize appeal. Objective: The aim of our study was to determine the level of public interest in a new mental health intervention that incorporates elements of self-help and peer counseling and that is disseminated via a Web-based training course; to identify predictors of interest in the program; and to identify consumer preferences for features of Web-based courses and peer support programs. Methods: We surveyed consumers via Amazon?s Mechanical Turk to estimate interest in the self-help and peer support program. We assessed associations between demographic and clinical characteristics and interest in the program, and we obtained feedback on desired features of the program. Results: Overall, 63.9% (378/592) of respondents said that they would try the program; interest was lower but still substantial among those who were not willing or able to access traditional mental health services. Female gender, lower income, and openness to using psychotherapy were the most consistent predictors of interest in the program. The majority of respondents, although not all, preferred romantic partners or close friends as peer counselors and would be most likely to access the program if the training course were accessed on a stand-alone website. In general, respondents valued training in active listening skills. Conclusions: In light of the apparent public interest in this program, Web-disseminated self-help and peer support interventions have enormous potential to fill gaps in mental health care. The results of this survey can be used to inform the design of such interventions. UR - http://mental.jmir.org/2017/1/e5/ UR - http://dx.doi.org/10.2196/mental.4751 UR - http://www.ncbi.nlm.nih.gov/pubmed/28104578 ID - info:doi/10.2196/mental.4751 ER - TY - JOUR AU - Pappa, Lobo Gisele AU - Cunha, Oliveira Tiago AU - Bicalho, Viana Paulo AU - Ribeiro, Antonio AU - Couto Silva, Paula Ana AU - Meira Jr, Wagner AU - Beleigoli, Rezende Alline Maria PY - 2017/01/16 TI - Factors Associated With Weight Change in Online Weight Management Communities: A Case Study in the LoseIt Reddit Community JO - J Med Internet Res SP - e17 VL - 19 IS - 1 KW - obesity KW - online social media KW - weight loss KW - user behavior KW - topic modeling N2 - Background: Recent research has shown that of the 72% of American Internet users who have looked for health information online, 22% have searched for help to lose or control weight. This demand for information has given rise to many online weight management communities, where users support one another throughout their weight loss process. Whether and how user engagement in online communities relates to weight change is not totally understood. Objective: We investigated the activity behavior and analyze the semantic content of the messages of active users in LoseIt (r/loseit), a weight management community of the online social network Reddit. We then explored whether these features are associated with weight loss in this online social network. Methods: A data collection tool was used to collect English posts, comments, and other public metadata of active users (ie, users with at least one post or comment) on LoseIt from August 2010 to November 2014. Analyses of frequency and intensity of user interaction in the community were performed together with a semantic analysis of the messages, done by a latent Dirichlet allocation method. The association between weight loss and online user activity patterns, the semantics of the messages, and real-world variables was found by a linear regression model using 30-day weight change as the dependent variable. Results: We collected posts and comments of 107,886 unique users. Among these, 101,003 (93.62%) wrote at least one comment and 38,981 (36.13%) wrote at least one post. Median percentage of days online was 3.81 (IQR 9.51). The 10 most-discussed semantic topics on posts were related to healthy food, clothing, calorie counting, workouts, looks, habits, support, and unhealthy food. In the subset of 754 users who had gender, age, and 30-day weight change data available, women were predominant and 92.9% (701/754) lost weight. Female gender, body mass index (BMI) at baseline, high levels of online activity, the number of upvotes received per post, and topics discussed within the community were independently associated with weight change. Conclusions: Our findings suggest that among active users of a weight management community, self-declaration of higher BMI levels (which may represent greater dissatisfaction with excess weight), high online activity, and engagement in discussions that might provide social support are associated with greater weight loss. These findings have the potential to aid health professionals to assist patients in online interventions by focusing efforts on increasing engagement and/or starting discussions on topics of higher impact on weight change. UR - http://www.jmir.org/2017/1/e17/ UR - http://dx.doi.org/10.2196/jmir.5816 UR - http://www.ncbi.nlm.nih.gov/pubmed/28093378 ID - info:doi/10.2196/jmir.5816 ER - TY - JOUR AU - DeHoff, A. Beth AU - Staten, K. Lisa AU - Rodgers, Christine Rylin AU - Denne, C. Scott PY - 2016/12/22 TI - The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review JO - J Med Internet Res SP - e333 VL - 18 IS - 12 KW - health communication KW - child KW - social media KW - health education KW - health resources KW - early childhood KW - disability KW - neonatal intensive care unit KW - family KW - maternal-child health services N2 - Background: When parents of young children with special health care needs (CSHCN) receive their child?s diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child?s immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them. Objective: The purpose of this work was to review evidence of the information and support needs of parents of young CSHCN and to determine whether online social support can serve as an avenue for learning and empowerment for these parents. Methods: A scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. We also conducted interviews with professionals serving parents of CSHCN. Results: The literature review and interviews suggested that parents best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the United States. Conclusions: Parents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child. UR - http://www.jmir.org/2016/12/e333/ UR - http://dx.doi.org/10.2196/jmir.6722 UR - http://www.ncbi.nlm.nih.gov/pubmed/28007689 ID - info:doi/10.2196/jmir.6722 ER - TY - JOUR AU - Ben-Sasson, Ayelet AU - Yom-Tov, Elad PY - 2016/11/22 TI - Online Concerns of Parents Suspecting Autism Spectrum Disorder in Their Child: Content Analysis of Signs and Automated Prediction of Risk JO - J Med Internet Res SP - e300 VL - 18 IS - 11 KW - online queries KW - autistic disorders KW - parents KW - machine learning KW - early detection N2 - Background: Online communities are used as platforms by parents to verify developmental and health concerns related to their child. The increasing public awareness of autism spectrum disorders (ASD) leads more parents to suspect ASD in their child. Early identification of ASD is important for early intervention. Objective: To characterize the symptoms mentioned in online queries posed by parents who suspect that their child might have ASD and determine whether they are age-specific. To test the efficacy of machine learning tools in classifying the child?s risk of ASD based on the parent?s narrative. Methods: To this end, we analyzed online queries posed by parents who were concerned that their child might have ASD and categorized the warning signs they mentioned according to ASD-specific and non-ASD?specific domains. We then used the data to test the efficacy with which a trained machine learning tool classified the degree of ASD risk. Yahoo Answers, a social site for posting queries and finding answers, was mined for queries of parents asking the community whether their child has ASD. A total of 195 queries were sampled for this study (mean child age=38.0 months; 84.7% [160/189] boys). Content text analysis of the queries aimed to categorize the types of symptoms described and obtain clinical judgment of the child?s ASD-risk level. Results: Concerns related to repetitive and restricted behaviors and interests (RRBI) were the most prevalent (75.4%, 147/195), followed by concerns related to language (61.5%, 120/195) and emotional markers (50.3%, 98/195). Of the 195 queries, 18.5% (36/195) were rated by clinical experts as low-risk, 30.8% (60/195) as medium-risk, and 50.8% (99/195) as high-risk. Risk groups differed significantly (P<.001) in the rate of concerns in the language, social, communication, and RRBI domains. When testing whether an automatic classifier (decision tree) could predict if a query was medium- or high-risk based on the text of the query and the coded symptoms, performance reached an area under the receiver operating curve (ROC) curve of 0.67 (CI 95% 0.50-0.78), whereas predicting from the text and the coded signs resulted in an area under the curve of 0.82 (0.80-0.86). Conclusions: Findings call for health care providers to closely listen to parental ASD-related concerns, as recommended by screening guidelines. They also demonstrate the need for Internet-based screening systems that utilize parents? narratives using a decision tree questioning method. UR - http://www.jmir.org/2016/11/e300/ UR - http://dx.doi.org/10.2196/jmir.5439 UR - http://www.ncbi.nlm.nih.gov/pubmed/27876688 ID - info:doi/10.2196/jmir.5439 ER - TY - JOUR AU - Park, Albert AU - Hartzler, L. Andrea AU - Huh, Jina AU - Hsieh, Gary AU - McDonald, W. David AU - Pratt, Wanda PY - 2016/11/02 TI - ?How Did We Get Here??: Topic Drift in Online Health Discussions JO - J Med Internet Res SP - e284 VL - 18 IS - 11 KW - consumer health KW - health informatics KW - health care information systems KW - similarity measures KW - Internet communications tools KW - Web-based interaction KW - collaborative and social computing systems and tools N2 - Background: Patients increasingly use online health communities to exchange health information and peer support. During the progression of health discussions, a change of topic?topic drift?can occur. Topic drift is a frequent phenomenon linked to incoherence and frustration in online communities and other forms of computer-mediated communication. For sensitive topics, such as health, such drift could have life-altering repercussions, yet topic drift has not been studied in these contexts. Objective: Our goals were to understand topic drift in online health communities and then to develop and evaluate an automated approach to detect both topic drift and efforts of community members to counteract such drift. Methods: We manually analyzed 721 posts from 184 threads from 7 online health communities within WebMD to understand topic drift, members? reaction towards topic drift, and their efforts to counteract topic drift. Then, we developed an automated approach to detect topic drift and counteraction efforts. We detected topic drift by calculating cosine similarity between 229,156 posts from 37,805 threads and measuring change of cosine similarity scores from the threads? first posts to their sequential posts. Using a similar approach, we detected counteractions to topic drift in threads by focusing on the irregular increase of similarity scores compared to the previous post in threads. Finally, we evaluated the performance of our automated approaches to detect topic drift and counteracting efforts by using a manually developed gold standard. Results: Our qualitative analyses revealed that in threads of online health communities, topics change gradually, but usually stay within the global frame of topics for the specific community. Members showed frustration when topic drift occurred in the middle of threads but reacted positively to off-topic stories shared as separate threads. Although all types of members helped to counteract topic drift, original posters provided the most effort to keep threads on topic. Cosine similarity scores show promise for automatically detecting topical changes in online health discussions. In our manual evaluation, we achieved an F1 score of .71 and .73 for detecting topic drift and counteracting efforts to stay on topic, respectively. Conclusions: Our analyses expand our understanding of topic drift in a health context and highlight practical implications, such as promoting off-topic discussions as a function of building rapport in online health communities. Furthermore, the quantitative findings suggest that an automated tool could help detect topic drift, support counteraction efforts to bring the conversation back on topic, and improve communication in these important communities. Findings from this study have the potential to reduce topic drift and improve online health community members? experience of computer-mediated communication. Improved communication could enhance the personal health management of members who seek essential information and support during times of difficulty. UR - http://www.jmir.org/2016/11/e284/ UR - http://dx.doi.org/10.2196/jmir.6297 UR - http://www.ncbi.nlm.nih.gov/pubmed/27806924 ID - info:doi/10.2196/jmir.6297 ER - TY - JOUR AU - Brady, Ellen AU - Segar, Julia AU - Sanders, Caroline PY - 2016/10/13 TI - ?I Always Vet Things?: Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions JO - J Med Internet Res SP - e274 VL - 18 IS - 10 KW - privacy KW - ethics KW - research ethics KW - informed consent KW - patients KW - social support N2 - Background: The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members. Objective: There has been very little research regarding how privacy is experienced and enacted online. The objective of this study is to address this gap by qualitatively exploring the expectations of privacy on Internet forums among individuals with long-term conditions. Methods: Semistructured interviews were conducted with 20 participants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 21 participants with type 1 and 2 diabetes mellitus, and were analyzed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. Results: The findings indicate that privacy online is a nebulous concept. Rather than individuals drawing a clear-cut distinction between what they would and would not be comfortable sharing online, it was evident that these situations were contextually dependent and related to a number of unique and individual factors. Conclusions: Interviewees were seen to carefully manage how they presented themselves on forums, filtering and selecting the information that they shared about themselves in order to develop and maintain a particular online persona, while maintaining and preserving an acceptable level of privacy. UR - http://www.jmir.org/2016/10/e274/ UR - http://dx.doi.org/10.2196/jmir.6019 UR - http://www.ncbi.nlm.nih.gov/pubmed/27737819 ID - info:doi/10.2196/jmir.6019 ER - TY - JOUR AU - Quinn, Darren AU - Chen, Liming AU - Mulvenna, D. Maurice AU - Bond, Raymond PY - 2016/09/29 TI - Exploring the Relationship Between Online Social Network Site Usage and the Impact on Quality of Life for Older and Younger Users: An Interaction Analysis JO - J Med Internet Res SP - e245 VL - 18 IS - 9 KW - online social network KW - social networking KW - Facebook KW - quality of life KW - interaction analysis KW - younger users KW - older users N2 - Background: Analyzing content generated by users of social network sites has been shown to be beneficial across a number of disciplines. Such analysis has revealed the precise behavior of users that details their distinct patterns of engagement. An issue is evident whereby without direct engagement with end users, the reasoning for anomalies can only be the subject of conjecture. Furthermore, the impact of engaging in social network sites on quality of life is an area which has received little attention. Of particular interest is the impact of online social networking on older users, which is a demographic that is specifically vulnerable to social isolation. A review of the literature reveals a lack of knowledge concerning the impact of these technologies on such users and even less is known regarding how this impact varies across different demographics. Objective: The objective of our study was to analyze user interactions and to survey the attitudes of social network users directly, capturing data in four key areas: (1) functional usage, (2) behavioral patterns, (3) technology, and (4) quality of life. Methods: An online survey was constructed, comprising 32 questions. Each question directly related to a research question. Respondents were recruited through a variety of methods including email campaigns, Facebook advertisements, and promotion from related organizations. Results: In total, data was collected from 919 users containing 446 younger and 473 older users. In comparison to younger users, a greater proportion of older users (289/473, 61.1% older vs 218/446, 48.9% younger) (P<.001) stated that Facebook had either a positive or huge impact on their quality of life. Furthermore, a greater percentage of older users strongly agreed that Facebook strengthened their relationship with other people (64/473, 13.5% older vs 40/446, 9.0%younger) (P=.02). In comparison to younger users, a greater proportion of older users had more positive emotions?classified as slightly better or very good?during their engagement with Facebook (186/473, 39.3% older vs 120/446, 26.9% younger) (P<.001). Conclusions: The results reveal that despite engaging at considerably lower rates with significantly fewer connections, older users gain a greater quality-of-life benefit. Results disclose how both cohorts vary in their use, interactions, and rationale for engaging with Facebook. UR - http://www.jmir.org/2016/9/e245/ UR - http://dx.doi.org/10.2196/jmir.5377 UR - http://www.ncbi.nlm.nih.gov/pubmed/27687745 ID - info:doi/10.2196/jmir.5377 ER - TY - JOUR AU - Bohleber, Laura AU - Crameri, Aureliano AU - Eich-Stierli, Brigitte AU - Telesko, Rainer AU - von Wyl, Agnes PY - 2016/09/23 TI - Can We Foster a Culture of Peer Support and Promote Mental Health in Adolescence Using a Web-Based App? A Control Group Study JO - JMIR Ment Health SP - e45 VL - 3 IS - 3 KW - mental health KW - health promotion KW - mobile applications KW - adolescence KW - peer group KW - mentors N2 - Background: Adolescence with its many transitions is a vulnerable period for the development of mental illnesses. Establishing effective mental health promotion programs for this age group is a challenge crucial to societal health. Programs must account for the specific developmental tasks that adolescents face. Considering peer influence and fostering adolescent autonomy strivings is essential. Participation in a program should be compelling to young people, and their affinity to new technologies offers unprecedented opportunities in this respect. Objective: The Companion App was developed as a Web-based app giving adolescents access to a peer mentoring system and interactive, health-relevant content to foster a positive peer culture among adolescents and thereby strengthen social support and reduce stress. Methods: In a control group study design, a group of employed (n=546) and unemployed (n=73) adolescents had access to the Companion App during a 10-month period. The intervention was evaluated using a combination of quantitative and qualitative approaches. Linear mixed effects models were used to analyze changes in chronic stress levels and perception of social support. Monthly feedback on the app and qualitative interviews at the end of the study allowed for an in-depth exploration of the adolescents? perception of the intervention. Results: Adolescents in the intervention group did not use the Companion App consistently. The intervention had no significant effect on chronic stress levels or the perception of social support. Adolescents reported endorsing the concept of the app and the implementation of a peer mentoring system in particular. However, technical difficulties and insufficiently obvious benefits of using the app impeded more frequent usage. Conclusions: The Companion Project implemented a theory-driven and innovative approach to mental health promotion in adolescence, taking into account the specifics of this developmental phase. Particularities of the implementation context, technical aspects of the app, and insufficient incentives may have played considerable roles concerning the difficulties of the Companion Project to establish commitment. However, adopting peer mentoring as a strategy and using an app still seems to us a promising approach in mental health promotion in adolescents. Future projects should be careful to invest enough resources into the technical development of an app and consider a large use of incentives to establish commitment. When targeting risk groups, such as unemployed adolescents, it may be expedient to use more structured approaches including face-to-face support. UR - http://mental.jmir.org/2016/3/e45/ UR - http://dx.doi.org/10.2196/mental.5597 UR - http://www.ncbi.nlm.nih.gov/pubmed/27663691 ID - info:doi/10.2196/mental.5597 ER - TY - JOUR AU - Huh, Jina AU - Marmor, Rebecca AU - Jiang, Xiaoqian PY - 2016/09/08 TI - Lessons Learned for Online Health Community Moderator Roles: A Mixed-Methods Study of Moderators Resigning From WebMD Communities JO - J Med Internet Res SP - e247 VL - 18 IS - 9 KW - qualitative research KW - online systems KW - social network KW - information science KW - Internet KW - social support KW - user computer interface KW - health information technologies KW - public health informatics KW - consumer health information N2 - Background: Online health community (OHC) moderators help facilitate conversations and provide information to members. However, the necessity of the moderator in helping members achieve goals by providing the support they need remains unclear, with some prior research suggesting that moderation is unnecessary or even harmful for close-knit OHCs. Similarly, members? perceptions of moderator roles are underexplored. Starting January of 2013, WebMD moderators stopped working for WebMD communities. This event provided an opportunity for us to study the perceived role of moderators in OHCs. Objective: We examine the OHC members? perception on OHC moderators by studying their reactions toward the departure of moderators in their communities. We also analyzed the relative posting activity on OHCs before and after the departure of moderators from the communities among all members and those who discussed moderators? departures. Methods: We applied a mixed-methods approach to study the posts of all 55 moderated WebMD communities by querying the terms relating to discussions surrounding moderators? disappearance from the WebMD community. We performed open and axial coding and affinity diagramming to thematically analyze patients? reactions to the disappeared moderators. The number of posts and poster groups (members and moderators) were analyzed over time to understand posting patterns around moderators? departure. Results: Of 821 posts retrieved under 95 threads, a total of 166 open codes were generated. The codes were then grouped into 2 main themes with 6 total subthemes. First, patients attempted to understand why moderators had left and what could be done to fill the void left by the missing moderators. During these discussions, the posts revealed that patients believed that moderators played critical roles in the communities by making the communities vibrant and healthy, finding solutions, and giving medical information. Some patients felt personally attached with moderators, expressing they would cease their community participation. On the other hand, patients also indicated that moderators were not useful or sometimes even harmful for peer interactions. The overall communities? posting activity, which was already in decline, showed no significant difference before and after the moderators? departure. In fact, the overall posting activities of the communities were declining well before the moderators? departure. These declining posting activities might be the reason why WebMD removed the moderators. Conclusion: Compassionate moderators who provide medical expertise, control destructive member posts, and help answer questions can provide important support for patient engagement in OHCs. Moderators are in general received positively by community members and do not appear to interfere with peer interactions. Members are well aware of the possibility of misinformation spreading in OHCs. Further investigation into the attitudes of less vocal community members should be conducted. UR - http://www.jmir.org/2016/9/e247/ UR - http://dx.doi.org/10.2196/jmir.6331 UR - http://www.ncbi.nlm.nih.gov/pubmed/27608721 ID - info:doi/10.2196/jmir.6331 ER - TY - JOUR AU - Zhao, Kang AU - Wang, Xi AU - Cha, Sarah AU - Cohn, M. Amy AU - Papandonatos, D. George AU - Amato, S. Michael AU - Pearson, L. Jennifer AU - Graham, L. Amanda PY - 2016/08/25 TI - A Multirelational Social Network Analysis of an Online Health Community for Smoking Cessation JO - J Med Internet Res SP - e233 VL - 18 IS - 8 KW - social networks KW - smoking cessation KW - community networks N2 - Background: Online health communities (OHCs) provide a convenient and commonly used way for people to connect around shared health experiences, exchange information, and receive social support. Users often interact with peers via multiple communication methods, forming a multirelational social network. Use of OHCs is common among smokers, but to date, there have been no studies on users? online interactions via different means of online communications and how such interactions are related to smoking cessation. Such information can be retrieved in multirelational social networks and could be useful in the design and management of OHCs. Objective: To examine the social network structure of an OHC for smoking cessation using a multirelational approach, and to explore links between subnetwork position (ie, centrality) and smoking abstinence. Methods: We used NetworkX to construct 4 subnetworks based on users? interactions via blogs, group discussions, message boards, and private messages. We illustrated topological properties of each subnetwork, including its degree distribution, density, and connectedness, and compared similarities among these subnetworks by correlating node centrality and measuring edge overlap. We also investigated coevolution dynamics of this multirelational network by analyzing tie formation sequences across subnetworks. In a subset of users who participated in a randomized, smoking cessation treatment trial, we conducted user profiling based on users? centralities in the 4 subnetworks and identified user groups using clustering techniques. We further examined 30-day smoking abstinence at 3 months postenrollment in relation to users? centralities in the 4 subnetworks. Results: The 4 subnetworks have different topological characteristics, with message board having the most nodes (36,536) and group discussion having the highest network density (4.35×10?3). Blog and message board subnetworks had the most similar structures with an in-degree correlation of .45, out-degree correlation of .55, and Jaccard coefficient of .23 for edge overlap. A new tie in the group discussion subnetwork had the lowest probability of triggering subsequent ties among the same two users in other subnetworks: 6.33% (54,142/855,893) for 2-tie sequences and 2.13% (18,207/855,893) for 3-tie sequences. Users? centralities varied across the 4 subnetworks. Among a subset of users enrolled in a randomized trial, those with higher centralities across subnetworks generally had higher abstinence rates, although high centrality in the group discussion subnetwork was not associated with higher abstinence rates. Conclusions: A multirelational approach revealed insights that could not be obtained by analyzing the aggregated network alone, such as the ineffectiveness of group discussions in triggering social ties of other types, the advantage of blogs, message boards, and private messages in leading to subsequent social ties of other types, and the weak connection between one?s centrality in the group discussion subnetwork and smoking abstinence. These insights have implications for the design and management of online social networks for smoking cessation. UR - http://www.jmir.org/2016/8/e233/ UR - http://dx.doi.org/10.2196/jmir.5985 UR - http://www.ncbi.nlm.nih.gov/pubmed/27562640 ID - info:doi/10.2196/jmir.5985 ER - TY - JOUR AU - Ruckenstuhl, Paul AU - Schippinger, Michael AU - Liebmann, Paul AU - Leithner, Andreas AU - Bernhardt, Gerwin PY - 2016/08/25 TI - Like or Dislike? Impact of Facebook on Ewing Sarcoma Treatment JO - JMIR Cancer SP - e11 VL - 2 IS - 2 KW - social media KW - Facebook KW - Ewing sarcoma KW - social media networking N2 - Background: An increasing number of patients are raising their voices in online forums to exchange health-related information. Facebook is the leading social media platform with more than 1 billion international daily users recorded in the summer of 2015. Facebook has a dynamic audience and is utilized in a number of ways, discussing medical issues being one of them. Ewing sarcoma mainly affects teenagers and young adults. Additionally, many individuals within this age group are regular users of Facebook. However, little is known about the impact of this modern way of communication via Web-based platforms on patients with Ewing sarcoma and their social environment. Objective: The aim of this study was to analyze and compare Ewing sarcoma patients? and relatives? behavior on Facebook to draw conclusions regarding the impact of Facebook on Ewing sarcoma treatment. Methods: We examined a Facebook group named ?Ewing Sarcoma Awareness? that is used to exchange information for both patients and relatives regarding Ewing sarcoma. A self-designed questionnaire was used to compare patients? and relatives? answers. Additionally, we analyzed all processes (posts, likes, threads, links) in the group for 6 consecutive months. A total of 65 members of the Facebook group (26 patients, 39 relatives) out of 2227 international group members participated in our study. Results: More than 70% (46/65) of all participants reported that they use the group Ewing Sarcoma Awareness as a source of information about Ewing sarcoma. Of the participants, 89% (58/65) agreed on our scale from a little to a lot that being in contact with other affected people through the group makes it easier to handle the diagnosis. In this study, 20% (13/65) of all participants reported that the group affected their choice of treatment and 15% (10/65) of participants were influenced in the selection of their specialist. Regarding the recommendation of the Facebook group toward other people, significant differences (P=.003) were found comparing patients? and relatives? results. During the last 6 months most activities in the group concerned sharing destiny and handling the diagnosis. Conclusions: The Facebook group Ewing Sarcoma Awareness has a relevant impact on group members regarding their choice of treatment. Moreover, participants turn toward the group to receive mental and emotional support in everyday life. Statements made within the group are in part questionable from a medical point of view and the impact made by these statements on patients? care requires further evaluation. UR - http://cancer.jmir.org/2016/2/e11/ UR - http://dx.doi.org/10.2196/cancer.5367 UR - http://www.ncbi.nlm.nih.gov/pubmed/28410188 ID - info:doi/10.2196/cancer.5367 ER - TY - JOUR AU - Grosberg, Dafna AU - Grinvald, Haya AU - Reuveni, Haim AU - Magnezi, Racheli PY - 2016/08/10 TI - Frequent Surfing on Social Health Networks is Associated With Increased Knowledge and Patient Health Activation JO - J Med Internet Res SP - e212 VL - 18 IS - 8 KW - Internet KW - social networks KW - social media KW - pain KW - Patient Activation Measure (PAM) KW - chronic disease KW - diabetes mellitus N2 - Background: The advent of the Internet has driven a technological revolution that has changed our lives. As part of this phenomenon, social networks have attained a prominent role in health care. A variety of medical services is provided over the Internet, including home monitoring, interactive communications between the patient and service providers, and social support, among others. This study emphasizes some of the practical implications of Web-based health social networks for patients and for health care systems. Objective: The objective of this study was to assess how participation in a social network among individuals with a chronic condition contributed to patient activation, based on the Patient Activation Measure (PAM). Methods: A prospective, cross-sectional survey with a retrospective component was conducted. Data were collected from Camoni, a Hebrew-language Web-based social health network, participants in the diabetes mellitus, pain, hypertension, and depression/anxiety forums, during November 2012 to 2013. Experienced users (enrolled at least 6 months) and newly enrolled received similar versions of the same questionnaire including sociodemographics and PAM. Results: Among 686 participants, 154 of 337 experienced and 123 of 349 newly enrolled completed the questionnaire. Positive correlations (P<.05) were found between frequency and duration of site visits and patient activation, social relationships, and chronic disease knowledge. Men surfed longer than women (?²3=10.104, P<.05). Experienced users with diabetes surfed more than those with other illnesses and had significantly higher PAM scores (mean, M=69.3, standard deviation, SD=19.1, PAM level 4; Z=?4.197, P<.001) than new users (M=62.8, SD=18.7, PAM level 3). Disease knowledge directly predicted PAM for all users (?=.26 and .21, respectively). Frequency and duration of social health network use were correlated with increased knowledge about a chronic disease. Experienced surfers had higher PAM than newly enrolled, suggesting that continued site use may contribute to increased activation. Conclusions: Web-based social health networks offer an opportunity to expand patient knowledge and increase involvement in personal health, thereby increasing patient activation. Further studies are needed to examine these changes on other aspects of chronic illnesses such as quality of life and costs. UR - http://www.jmir.org/2016/8/e212/ UR - http://dx.doi.org/10.2196/jmir.5832 UR - http://www.ncbi.nlm.nih.gov/pubmed/27511272 ID - info:doi/10.2196/jmir.5832 ER - TY - JOUR AU - Gruver, S. Rachel AU - Bishop-Gilyard, T. Chanelle AU - Lieberman, Alexandra AU - Gerdes, Marsha AU - Virudachalam, Senbagam AU - Suh, W. Andrew AU - Kalra, K. Gurpreet AU - Magge, N. Sheela AU - Shults, Justine AU - Schreiner, S. Mark AU - Power, J. Thomas AU - Berkowitz, I. Robert AU - Fiks, G. Alexander PY - 2016/08/02 TI - A Social Media Peer Group Intervention for Mothers to Prevent Obesity and Promote Healthy Growth from Infancy: Development and Pilot Trial JO - JMIR Res Protoc SP - e159 VL - 5 IS - 3 KW - obesity KW - social media KW - behavior change KW - intervention KW - internet KW - peer group KW - pediatrics KW - prevention and control KW - infant KW - mothers N2 - Background: Evidence increasingly indicates that childhood obesity prevention efforts should begin as early as infancy. However, few interventions meet the needs of families whose infants are at increased obesity risk due to factors including income and maternal body mass index (BMI). Social media peer groups may offer a promising new way to provide these families with the knowledge, strategies, and support they need to adopt obesity prevention behaviors. Objective: The aim of this study is to develop and pilot test a Facebook-based peer group intervention for mothers, designed to prevent pediatric obesity and promote health beginning in infancy. Methods: We conducted in-depth semi-structured interviews with 29 mothers of infants and focus groups with 30 pediatric clinicians, to inform the development of a theory-based intervention. We then conducted a single-group pilot trial with 8 mothers to assess its feasibility and acceptability. All participants were recruited offline at pediatric primary care practices. Participants in the pilot trial joined a private Facebook group, moderated by a psychologist, with a weekly video-based curriculum, and also had the option to meet at a face-to-face event. Within the Facebook group, mothers were encouraged to chat, ask questions, and share photos and videos of themselves and babies practicing healthy behaviors. Consistent with the literature on obesity prevention, the curriculum addressed infant feeding, sleep, activity, and maternal well-being. Feasibility was assessed using the frequency and content of group participation by mothers, and acceptability was measured using online surveys and phone interviews. Results: Based on preferences of mothers interviewed (mean BMI 35 kg/m2, all Medicaid-insured, mean age 27, all Black), we designed the intervention to include frequent posts with new information, videos showing parents of infants demonstrating healthy behaviors, and an optional face-to-face meeting. We developed a privacy and safety plan that met the needs of participants as well as the requirements of the local institutional review board (IRB), which included use of a ?secret? group and frequent screening of participant posts. Clinicians, 97% (29/30) women and 87% (26/30) pediatricians, preferred no direct involvement in the intervention, but were supportive of their patients? participation. In our 8-week, single group pilot trial, all participants (mean BMI 35 kg/m2, all Medicaid-insured, mean age 28, all Black) viewed every weekly video post, and interacted frequently, with a weekly average of 4.4 posts/comments from each participant. All participant posts were related to parenting topics. Participants initiated conversations about behaviors related to healthy infant growth including solid food introduction, feeding volume, and managing stress. All 8 pilot group participants reported that they found the group helpful and would recommend it to others. Conclusions: Our methodology was feasible and acceptable to low-income mothers of infants at high risk of obesity, and could be adapted to implement peer groups through social media for underserved populations in varied settings. ClinicalTrial: ClinicalTrials.gov NCT01977105; https://clinicaltrials.gov/ct2/show/NCT01977105 (Archived by WebCite at http://www.webcitation.org/6iMFfOBat) UR - http://www.researchprotocols.org/2016/3/e159/ UR - http://dx.doi.org/10.2196/resprot.5276 UR - http://www.ncbi.nlm.nih.gov/pubmed/27485934 ID - info:doi/10.2196/resprot.5276 ER - TY - JOUR AU - Wongchaisuwat, Papis AU - Klabjan, Diego AU - Jonnalagadda, Reddy Siddhartha PY - 2016/08/02 TI - A Semi-Supervised Learning Approach to Enhance Health Care Community?Based Question Answering: A Case Study in Alcoholism JO - JMIR Med Inform SP - e24 VL - 4 IS - 3 KW - machine learning KW - natural language processing KW - question answering KW - Web-based health communities KW - consumer health informatics N2 - Background: Community-based question answering (CQA) sites play an important role in addressing health information needs. However, a significant number of posted questions remain unanswered. Automatically answering the posted questions can provide a useful source of information for Web-based health communities. Objective: In this study, we developed an algorithm to automatically answer health-related questions based on past questions and answers (QA). We also aimed to understand information embedded within Web-based health content that are good features in identifying valid answers. Methods: Our proposed algorithm uses information retrieval techniques to identify candidate answers from resolved QA. To rank these candidates, we implemented a semi-supervised leaning algorithm that extracts the best answer to a question. We assessed this approach on a curated corpus from Yahoo! Answers and compared against a rule-based string similarity baseline. Results: On our dataset, the semi-supervised learning algorithm has an accuracy of 86.2%. Unified medical language system?based (health related) features used in the model enhance the algorithm?s performance by proximately 8%. A reasonably high rate of accuracy is obtained given that the data are considerably noisy. Important features distinguishing a valid answer from an invalid answer include text length, number of stop words contained in a test question, a distance between the test question and other questions in the corpus, and a number of overlapping health-related terms between questions. Conclusions: Overall, our automated QA system based on historical QA pairs is shown to be effective according to the dataset in this case study. It is developed for general use in the health care domain, which can also be applied to other CQA sites. UR - http://medinform.jmir.org/2016/3/e24/ UR - http://dx.doi.org/10.2196/medinform.5490 UR - http://www.ncbi.nlm.nih.gov/pubmed/27485666 ID - info:doi/10.2196/medinform.5490 ER - TY - JOUR AU - Rolls, Kaye AU - Hansen, Margaret AU - Jackson, Debra AU - Elliott, Doug PY - 2016/6/16 TI - How Health Care Professionals Use Social Media to Create Virtual Communities: An Integrative Review JO - J Med Internet Res SP - e166 VL - 18 IS - 6 KW - social media KW - literature review KW - physicians KW - nurses KW - midwives KW - social networking KW - pharmacist KW - social worker KW - allied health personnel N2 - Background: Prevailing health care structures and cultures restrict intraprofessional communication, inhibiting knowledge dissemination and impacting the translation of research into practice. Virtual communities may facilitate professional networking and knowledge sharing in and between health care disciplines. Objectives: This study aimed to review the literature on the use of social media by health care professionals in developing virtual communities that facilitate professional networking, knowledge sharing, and evidence-informed practice. Methods: An integrative literature review was conducted to identify research published between 1990 and 2015. Search strategies sourced electronic databases (PubMed, CINAHL), snowball references, and tables of contents of 3 journals. Papers that evaluated social media use by health care professionals (unless within an education framework) using any research design (except for research protocols or narrative reviews) were included. Standardized data extraction and quality assessment tools were used. Results: Overall, 72 studies were included: 44 qualitative (including 2 ethnographies, 26 qualitative descriptive, and 1 Q-sort) and 20 mixed-methods studies, and 8 literature reviews. The most common methods of data collection were Web-based observation (n=39), surveys (n=23), interviews (n=11), focus groups (n=2), and diaries (n=1). Study quality was mixed. Social media studied included Listservs (n=22), Twitter (n=18), general social media (n=17), discussion forums (n=7), Web 2.0 (n=3), virtual community of practice (n=3), wiki (n=1), and Facebook (n=1). A range of health care professionals were sampled in the studies, including physicians (n=24), nurses (n=15), allied health professionals (n=14), followed by health care professionals in general (n=8), a multidisciplinary clinical specialty area (n=9), and midwives (n=2). Of 36 virtual communities, 31 were monodiscipline for a discrete clinical specialty. Population uptake by the target group ranged from 1.6% to 29% (n=4). Evaluation using related theories of ?planned behavior? and the ?technology acceptance model? (n=3) suggests that social media use is mediated by an individual?s positive attitude toward and accessibility of the media, which is reinforced by credible peers. The most common reason to establish a virtual community was to create a forum where relevant specialty knowledge could be shared and professional issues discussed (n=17). Most members demonstrated low posting behaviors but more frequent reading or accessing behaviors. The most common Web-based activity was request for and supply of specialty-specific clinical information. This knowledge sharing is facilitated by a Web-based culture of collectivism, reciprocity, and a respectful noncompetitive environment. Findings suggest that health care professionals view virtual communities as valuable knowledge portals for sourcing clinically relevant and quality information that enables them to make more informed practice decisions. Conclusions: There is emerging evidence that health care professionals use social media to develop virtual communities to share domain knowledge. These virtual communities, however, currently reflect tribal behaviors of clinicians that may continue to limit knowledge sharing. Further research is required to evaluate the effects of social media on knowledge distribution in clinical practice and importantly whether patient outcomes are significantly improved. UR - http://www.jmir.org/2016/6/e166/ UR - http://dx.doi.org/10.2196/jmir.5312 UR - http://www.ncbi.nlm.nih.gov/pubmed/27328967 ID - info:doi/10.2196/jmir.5312 ER - TY - JOUR AU - Pian, Wenjing AU - Khoo, SG Christopher AU - Chang, Yun-Ke PY - 2016/06/20 TI - The Criteria People Use in Relevance Decisions on Health Information: An Analysis of User Eye Movements When Browsing a Health Discussion Forum JO - J Med Internet Res SP - e136 VL - 18 IS - 6 KW - information seeking behavior KW - media, social KW - Internet KW - judgment, decision-making KW - criteria KW - relevance assessment KW - consumer health N2 - Background: People are increasingly accessing health-related social media sites, such as health discussion forums, to post and read user-generated health information. It is important to know what criteria people use when deciding the relevance of information found on health social media websites, in different situations. Objective: The study attempted to identify the relevance criteria that people use when browsing a health discussion forum, in 3 types of use contexts: when seeking information for their own health issue, when seeking for other people?s health issue, and when browsing without a particular health issue in mind. Methods: A total of 58 study participants were self-assigned to 1 of the 3 use contexts or information needs and were asked to browse a health discussion forum, HealthBoards.com. In the analysis, browsing a discussion forum was divided into 2 stages: scanning a set of post surrogates (mainly post titles) in the summary result screen and reading a detailed post content (including comments by other users). An eye tracker system was used to capture participants? eye movement behavior and the text they skim over and focus (ie, fixate) on during browsing. By analyzing the text that people?s eyes fixated on, the types of health information used in the relevance judgment were determined. Post-experiment interviews elicited participants? comments on the relevance of the information and criteria used. Results: It was found that participants seeking health information for their own health issue focused significantly more on the poster?s symptoms, personal history of the disease, and description of the disease (P=.01, .001, and .02). Participants seeking for other people?s health issue focused significantly more on cause of disease, disease terminology, and description of treatments and procedures (P=.01, .01, and .02). In contrast, participants browsing with no particular issue in mind focused significantly more on general health topics, hot topics, and rare health issues (P=.01, .01, and .01). Conclusion: Users browsing for their own health issues used mainly case-based relevance criteria to relate the poster's health situation to their own. Participants seeking for others? issues used mostly general knowledge?based criteria, whereas users with no particular issue in mind used general interest? and curiosity-based criteria. UR - http://www.jmir.org/2016/6/e136/ UR - http://dx.doi.org/10.2196/jmir.5513 UR - http://www.ncbi.nlm.nih.gov/pubmed/27323893 ID - info:doi/10.2196/jmir.5513 ER - TY - JOUR AU - Rolls, Kaye AU - Hansen, Margaret AU - Jackson, Debra AU - Elliott, Doug PY - 2016/06/13 TI - Why We Belong - Exploring Membership of Healthcare Professionals in an Intensive Care Virtual Community Via Online Focus Groups: Rationale and Protocol JO - JMIR Res Protoc SP - e99 VL - 5 IS - 2 KW - focus groups KW - virtual communities KW - social media KW - qualitative methods KW - clinicians KW - intensive care N2 - Background: Many current challenges of evidence-based practice are related to ineffective social networks among health care professionals. Opportunities exist for multidisciplinary virtual communities to transcend professional and organizational boundaries and facilitate important knowledge transfer. Although health care professionals have been using the Internet to form virtual communities for many years, little is known regarding ?why? they join, as most research has focused on the perspective of ?posters,? who form a minority of members. Objective: Our aim was to develop a comprehensive understanding of why health care professionals belong to a virtual community (VC). Methods: A qualitative approach will be used to explore why health care professionals belong to an intensive care practice-based VC, established since 2003. Three asynchronous online focus groups will be convened using a closed secure discussion forum. Participants will be recruited directly by sending emails to the VC and a Google form used to collect consent and participant demographics. Participants will be stratified by their online posting behaviors between September 1, 2012, and August 31, 2014: (1) more than 5 posts, (2) 1-5 posts, or (3) no posts. A question guide will be used to guide participant discussion. A moderation approach based on the principles of focus group method and e-moderation has been developed. The main source of data will be discussion threads, supported by a research diary and field notes. Data analysis will be undertaken using a thematic approach and framed by the Diffusion of Innovation theory. NVivo software will be used to support analyses. Results: At the time of writing, 29 participants agreed to participate (Focus Group 1: n=4; Focus Group 2: n=16; Focus Group 3: n=9) and data collection was complete. Conclusions: This study will contribute to a growing body of research on the use of social media in professional health care settings. Specifically, we hope results will demonstrate an enhancement of health care professionals? social networks and how VCs may improve knowledge distribution and patient care outcomes. Additionally, the study will contribute to research methods development in this area by detailing approaches to understand the effectiveness of online focus groups as a data collection method for qualitative research methods. UR - http://www.researchprotocols.org/2016/2/e99/ UR - http://dx.doi.org/10.2196/resprot.5323 UR - http://www.ncbi.nlm.nih.gov/pubmed/27296929 ID - info:doi/10.2196/resprot.5323 ER - TY - JOUR AU - Carron-Arthur, Bradley AU - Reynolds, Julia AU - Bennett, Kylie AU - Bennett, Anthony AU - Cunningham, Alastair John AU - Griffiths, Margaret Kathleen PY - 2016/05/30 TI - Community Structure of a Mental Health Internet Support Group: Modularity in User Thread Participation JO - JMIR Mental Health SP - e20 VL - 3 IS - 2 KW - internet KW - support group KW - social network KW - modularity KW - mental health KW - super user N2 - Background: Little is known about the community structure of mental health Internet support groups, quantitatively. A greater understanding of the factors, which lead to user interaction, is needed to explain the design information of these services and future research concerning their utility. Objective: A study was conducted to determine the characteristics of users associated with the subgroup community structure of an Internet support group for mental health issues. Methods: A social network analysis of the Internet support group BlueBoard (blueboard.anu.edu.au) was performed to determine the modularity of the community using the Louvain method. Demographic characteristics age, gender, residential location, type of user (consumer, carer, or other), registration date, and posting frequency in subforums (depression, generalized anxiety, social anxiety, panic disorder, bipolar disorder, obsessive compulsive disorder, borderline personality disorder, eating disorders, carers, general (eg, ?chit chat?), and suggestions box) of the BlueBoard users were assessed as potential predictors of the resulting subgroup structure. Results: The analysis of modularity identified five main subgroups in the BlueBoard community. Registration date was found to be the largest contributor to the modularity outcome as observed by multinomial logistic regression. The addition of this variable to the final model containing all other factors improved its classification accuracy by 46.3%, that is, from 37.9% to 84.2%. Further investigation of this variable revealed that the most active and central users registered significantly earlier than the median registration time in each group. Conclusions: The five subgroups resembled five generations of BlueBoard in distinct eras that transcended discussion about different mental health issues. This finding may be due to the activity of highly engaged and central users who communicate with many other users. Future research should seek to determine the generalizability of this finding and investigate the role that highly active and central users may play in the formation of this phenomenon. UR - http://mental.jmir.org/2016/2/e20/ UR - http://dx.doi.org/10.2196/mental.4961 UR - http://www.ncbi.nlm.nih.gov/pubmed/27242012 ID - info:doi/10.2196/mental.4961 ER - TY - JOUR AU - Fredriksen, Haukeland Eva AU - Harris, Janet AU - Moland, Marie Karen PY - 2016/05/26 TI - Web-based Discussion Forums on Pregnancy Complaints and Maternal Health Literacy in Norway: A Qualitative Study JO - J Med Internet Res SP - e113 VL - 18 IS - 5 KW - qualitative research KW - Internet KW - pregnancy KW - health literacy KW - web-based discussion forums KW - pelvic girdle pain N2 - Background: The Internet is one of the fastest growing information sources for pregnant women and seems to be used across social and economic strata. However, we still lack knowledge on how interaction in Web-based discussion forums influence maternal health literacy, in terms of how pregnant women access, appraise, and apply information to promote and maintain good health. Objective: The aim of this study was to understand how Web-based discussion forums influence maternal health literacy; hence, we explored the role of interactions in Web-based discussion forums among women who experienced health problems during pregnancy. More specifically, we explored why media-literate women experiencing the medically unexplained condition, pelvic girdle pain (PGP), during pregnancy participated in Web-based discussion forums and how they appraised and applied the information and advice that they gained from the Web-based interaction with other women. Methods: Women were invited to participate in the study via postings on 3 different open websites for pregnant women and mothers. The sample included 11 Norwegian women who participated in open Web-based discussion forums when experiencing PGP in pregnancy. The data were collected using synchronous qualitative email interviews and were analyzed using thematic analysis. Results: In our study sample, interaction in Web-based discussion forums influenced maternal health literacy in terms of increased health-related knowledge and competencies, increased awareness of health promotion and health protection, and increased system navigation. The women appraised and selectively applied information and advice that resonated with their own experiences. For many, the information provided online by other women in the same situation was valued more highly than advice from health professionals. Women reported that they used their knowledge and competency in encounters with health professionals but hesitated to disclose the origin of their knowledge. Those with a high level of education in medicine-related fields raised a concern about the Internet as a source of horror stories and erroneous information and were actively engaged in trying to minimize potential negative effects, by providing biomedical information. Conclusions: The popularity of Web-based discussion forums among pregnant women suggests that this group needs additional sources of information and support to complement traditional consultations with the health professionals. The professionals need to recognize that pregnant women access Web-based discussion forums for support and information to increase their ability to take better health decisions for themselves. This is a potential resource that health professionals may find useful in consultations with pregnant women. UR - http://www.jmir.org/2016/5/e113/ UR - http://dx.doi.org/10.2196/jmir.5270 UR - http://www.ncbi.nlm.nih.gov/pubmed/27230094 ID - info:doi/10.2196/jmir.5270 ER - TY - JOUR AU - Moore, Donna AU - Ayers, Susan AU - Drey, Nicholas PY - 2016/05/19 TI - A Thematic Analysis of Stigma and Disclosure for Perinatal Depression on an Online Forum JO - JMIR Mental Health SP - e18 VL - 3 IS - 2 KW - perinatal KW - online KW - Internet KW - depression KW - eHealth N2 - Background: Perinatal mental illness is a global health concern; however, many women do not get the treatment they need to recover. Some women choose not to seek professional help and get no treatment because they feel stigmatized. Online forums for various health conditions, including perinatal mental health, can be beneficial for members. Little is known about the role that online forums for perinatal mental illness play in reducing stigma and subsequent disclosure of symptoms to health care providers and treatment uptake. Objective: This study aimed to examine stigma and disclosure in forums and describe any potential disadvantages of forum use. Methods: An online forum for mothers was examined and 1546 messages extracted from 102 threads from the antenatal and postnatal depression section. These messages were subjected to deductive systematic thematic analysis to identify common themes regarding stigma and disclosure of symptoms and potential disadvantages of forum use. Results: Two major themes were identified: stigma and negative experiences of disclosure. Stigma had 3 subthemes: internal stigma, external stigma, and treatment stigma. Many women were concerned about feeling like a ?bad? or ?failed? mother and worried that if they disclosed their symptoms to a health care provider they would be stigmatized. Posts in response to this frequently encouraged women to disclose their symptoms to health care providers and accept professional treatment. Forum discourse reconstructed the ideology of motherhood as compatible with perinatal mental illness, especially if the woman sought help and adhered to treatment. Many women overcame stigma and replied that they had taken advice and disclosed to a health care provider and/or taken treatment. Conclusions: Forum use may increase women's disclosure to health care providers by challenging their internal and external stigma and this may strengthen professional treatment uptake and adherence. However, a few posts described negative experiences when disclosing to health care providers. UR - http://mental.jmir.org/2016/2/e18/ UR - http://dx.doi.org/10.2196/mental.5611 UR - http://www.ncbi.nlm.nih.gov/pubmed/27197516 ID - info:doi/10.2196/mental.5611 ER - TY - JOUR AU - Dean, Jeremy AU - Potts, WW Henry AU - Barker, Chris PY - 2016/05/17 TI - Direction to an Internet Support Group Compared With Online Expressive Writing for People With Depression and Anxiety: A Randomized Trial JO - JMIR Mental Health SP - e12 VL - 3 IS - 2 KW - depression KW - anxiety KW - Internet support KW - online support KW - expressive writing N2 - Background: Depression and anxiety are common, often comorbid, conditions, and Internet support groups for them are well used. However, little rigorous research has been conducted on the outcome of these groups. Objective: This study aimed to evaluate the efficacy of an Internet support group in reducing depression and anxiety, and increasing social support and life satisfaction. Methods: A randomized trial compared direction to an existing Internet support group for depression and anxiety with an online expressive writing condition. A total of 863 (628 female) United Kingdom, United States, and Canadian volunteers were recruited via the Internet. Online, self-report measures of depression, anxiety, social support, and satisfaction with life were administered at baseline, 3, and 6 months. Results: All four outcomes ? depression, anxiety, social support, and satisfaction with life ? improved over the 6 months of the study (all P<.001). There was no difference in outcome between the two conditions: participants responded similarly to the expressive writing and the Internet support group. Engagement with the Internet support group was low, it had high 6-month attrition (692/795, 87%) and low adherence, and it received mixed and often negative feedback. The main problems reported were a lack of comfort and connection with others, negative social comparisons, and the potential for receiving bad advice. Expressive writing had lower attrition (194/295, 65%) and participants reported that it was more acceptable. Conclusions: Until further evidence accumulates, directing people with depression and anxiety to Internet support groups cannot be recommended. On the other hand, online expressive writing seems to have potential, and its use for people with depression and anxiety warrants further investigation. Trial Registration: Trial Registration: Clinicaltrials.gov NCT01149265; https://clinicaltrials.gov/ct2/show/NCT01149265 (Archived by WebCite at http://www.webcitation.org/6hYISlNFT) UR - http://mental.jmir.org/2016/2/e12/ UR - http://dx.doi.org/10.2196/mental.5133 UR - http://www.ncbi.nlm.nih.gov/pubmed/27189142 ID - info:doi/10.2196/mental.5133 ER - TY - JOUR AU - Shoebotham, Amie AU - Coulson, S. Neil PY - 2016/05/09 TI - Therapeutic Affordances of Online Support Group Use in Women With Endometriosis JO - J Med Internet Res SP - e109 VL - 18 IS - 5 KW - endometriosis, social network, social support, qualitative research N2 - Background: The Internet has provided women living with endometriosis new opportunities to seek support online. Online support groups may provide a range of therapeutic affordances that may benefit these women. Objective: To examine the presence of therapeutic affordances as perceived by women who use endometriosis online support groups. Methods: Sixty-nine women (aged 19-50 years, mean 34.2 years; 65.2% (45/69) United Kingdom, 21.7% (15/69) United States) participated in a Web-based interview exploring online support group use. Participants had been using online support groups for an average of 2 years and 4 months (range = 1 month to 14 years, 9 months). Responses were analyzed using inductive thematic analysis. Results: The analysis revealed 4 therapeutic affordances related to online support group use: (1) ?connection,? that is, the ability to connect in order to support each other, exchange advice, and to try to overcome feelings of loneliness; (2) ?exploration,? that is, the ability to look for information, learn, and bolster their knowledge; (3) ?narration,? that is, the ability to share their experiences, as well as read about the experiences of others; and (4) ?self-presentation,? that is, the ability to manage how they present themselves online. The associated outcomes of use were predominantly positive, such as reassurance and improved coping. However, a number of negative aspects were revealed including the following: concerns about the accuracy of information, arguments between members, overreliance on the group, becoming upset by negative experiences or good news items, and confidentiality of personal information. Conclusions: Our findings support the previously proposed SCENA (Self-presentation, Connection, Exploration, Narration, and Adaptation) model and reveal a range of positive aspects that may benefit members, particularly in relation to reassurance and coping. However, negative aspects need to be addressed to maximize the potential benefit of support groups. Some of these can be addressed relatively easily through making privacy policies clearer, including health professionals to moderate content, and structuring forums to encourage the sharing of positive stories. UR - http://www.jmir.org/2016/5/e109/ UR - http://dx.doi.org/10.2196/jmir.5548 UR - http://www.ncbi.nlm.nih.gov/pubmed/27160641 ID - info:doi/10.2196/jmir.5548 ER - TY - JOUR AU - Kanthawala, Shaheen AU - Vermeesch, Amber AU - Given, Barbara AU - Huh, Jina PY - 2016/04/28 TI - Answers to Health Questions: Internet Search Results Versus Online Health Community Responses JO - J Med Internet Res SP - e95 VL - 18 IS - 4 KW - health communication KW - online health communities KW - question types classification KW - self-management KW - health-related Internet behavior use KW - risk of misinformation KW - Internet KW - diabetes N2 - Background: About 6 million people search for health information on the Internet each day in the United States. Both patients and caregivers search for information about prescribed courses of treatments, unanswered questions after a visit to their providers, or diet and exercise regimens. Past literature has indicated potential challenges around quality in health information available on the Internet. However, diverse information exists on the Internet?ranging from government-initiated webpages to personal blog pages. Yet we do not fully understand the strengths and weaknesses of different types of information available on the Internet. Objective: The objective of this research was to investigate the strengths and challenges of various types of health information available online and to suggest what information sources best fit various question types. Methods: We collected questions posted to and the responses they received from an online diabetes community and classified them according to Rothwell?s classification of question types (fact, policy, or value questions). We selected 60 questions (20 each of fact, policy, and value) and the replies the questions received from the community. We then searched for responses to the same questions using a search engine and recorded the Results: Community responses answered more questions than did search results overall. Search results were most effective in answering value questions and least effective in answering policy questions. Community responses answered questions across question types at an equivalent rate, but most answered policy questions and the least answered fact questions. Value questions were most answered by community responses, but some of these answers provided by the community were incorrect. Fact question search results were the most clinically valid. Conclusions: The Internet is a prevalent source of health information for people. The information quality people encounter online can have a large impact on them. We present what kinds of questions people ask online and the advantages and disadvantages of various information sources in getting answers to those questions. This study contributes to addressing people?s online health information needs. UR - http://www.jmir.org/2016/4/e95/ UR - http://dx.doi.org/10.2196/jmir.5369 UR - http://www.ncbi.nlm.nih.gov/pubmed/27125622 ID - info:doi/10.2196/jmir.5369 ER - TY - JOUR AU - Coulson, S. Neil AU - Smedley, Richard AU - Bostock, Sophie AU - Kyle, D. Simon AU - Gollancz, Rosie AU - Luik, I. Annemarie AU - Hames, Peter AU - Espie, A. Colin PY - 2016/04/25 TI - The Pros and Cons of Getting Engaged in an Online Social Community Embedded Within Digital Cognitive Behavioral Therapy for Insomnia: Survey Among Users JO - J Med Internet Res SP - e88 VL - 18 IS - 4 KW - engagement KW - sleep KW - online community KW - discussion forum KW - insomnia KW - cognitive behavioral therapy N2 - Background: Sleepio is a proven digital sleep improvement program based on cognitive behavioral therapy techniques. Users have the option to join an online community that includes weekly expert discussions, peer-to-peer discussion forums, and personal message walls. Objective: The aim of this study was to conduct an online survey to (1) explore the reasons for deciding to engage with the Sleepio online community, (2) explore the potential benefits arising from engagement with the online community, and (3) identify and describe any problematic issues related to use of the online community. Methods: We developed an online survey and posted an invitation to the community discussion forum inviting users to participate. In addition, we sent an email invitation to 970 individuals who had previously or were currently working through the Sleepio program to participate in this study. Results: In total, 100 respondents (70/100, 70% female; mean age 51 years, range 26?82 years) completed the online survey. Most respondents had started Sleepio with chronic sleep problems (59/100, 59% up to 10 years; 35/100, 35% >10 years) and had actively engaged with the online community (85/100, 85%) had made a discussion or wall post). At the time of the survey, respondents had used Sleepio for a median of 12 weeks (range from 3 weeks to 2 years). We analyzed responses to the open-ended questions using thematic analysis. This analysis revealed 5 initial drivers for engagement: (1) the desire to connect with people facing similar issues, (2) seeking personalized advice, (3) curiosity, (4) being invited by other members, and (5) wanting to use all available sleep improvement tools. Advantages of engagement included access to continuous support, a reduced sense of isolation, being part of a nonjudgmental community, personalized advice, positive comparisons with others, encouragement to keep going, and altruism. We found 5 potential disadvantages: design and navigation issues, uncertain quality of user-generated content, negative comparisons with others, excessive time commitments, and data privacy concerns. Participants related their community experiences to engagement with the Sleepio program, with many stating it had supported their efforts to improve their sleep, as well as helping with adherence and commitment to the program. Despite some concerns, members regarded the Sleepio community as a valuable resource. Conclusions: Online communities may be a useful means through which to support long-term engagement with Web-based therapy for insomnia. UR - http://www.jmir.org/2016/4/e88/ UR - http://dx.doi.org/10.2196/jmir.5654 UR - http://www.ncbi.nlm.nih.gov/pubmed/27113540 ID - info:doi/10.2196/jmir.5654 ER - TY - JOUR AU - Bright, Philip AU - Hambly, Karen AU - Tamakloe, Sandra PY - 2016/04/18 TI - What is the Profile of Individuals Joining the KNEEguru Online Health Community? A Cross-Sectional Mixed-Methods Study JO - J Med Internet Res SP - e84 VL - 18 IS - 4 KW - Information seeking behaviour KW - Internet KW - Nonverbal communication KW - Knee-pain N2 - Background: The use of the Internet for seekers of health-related information provides convenience and accessibility to diverse sources (of variable quality) for many medical conditions. There is a suggestion that patients may find empowerment by engaging with Internet health care strategies and communities. The profile of consumers of online health information on knee pain has not been explored. Objective: Our objective was to identify the characteristics and motivations of online health information-seekers accessing the online health community, KNEEguru (KG). The study was designed to obtain the respondents? sociodemographic profile, together with their main reasons and motivations for joining such a community, their health information-seeking behavior, the extent of their knee problems, and their general Internet usage. Methods: We undertook an online questionnaire survey, offered to users of the KG website from June to July 2012. A mix of open and closed questions was used to facilitate inductive enquiry. Quantitative responses were analyzed using univariate analysis; qualitative thematic analysis of the open responses was completed and a conceptual model was developed. Results: One-hundred and fifty-two respondents took part (11.56% response rate, 152/1315), with a mean age of 40.1 years. Of this cohort, 61.2% were female, 68.4% were in domestic partnerships, 57.2% were employed, 75.0% had higher education qualifications, and 80.3% were of white/Caucasian ethnicity. Females were associated with joining KG in order to get emotional support from other users (OR 2.11, 95% CI 1.04 - 4.27, P=.04). Respondents? self-perception of health was associated with reported quality of life (OR 10.86, 95% CI 3.85 - 30.43, P<.001). Facebook users were associated with joining KG to share experiences (OR 2.34, 95% CI 1.04 - 5.56, P=.03). Post-surgery respondents were associated with joining KG to compare symptoms with other users (OR 7.31, 95% CI 2.06 - 39.82, P<.001). Three key themes were induced: condition, emotion and support. Respondents expressed distress and frustration at uncertainty of prognosis around various knee conditions, with some users preferring to initially observe rather than engage. Conversely, a strong desire to inform and support other community members was stated with reciprocation of ideas and experiences. KG was conceptualized as a filter that takes an individual?s condition and emotional response to that condition as basis for support; this filter facilitated validation as the outcome of engagement. Conclusions: This study, in line with wider literature, suggests that users of an online knee-specific community are typically female, middle-aged, white/Caucasian, married, employed, and have attained a level of higher education. These users demonstrate a pragmatic approach to health care information with altruistic motivations and a desire to share experiences as a means of validation. This finding emphasizes a means of promoting efficient and appropriate online health care, and demonstrates the benefits of the Internet as a viable complement to clinical engagement. UR - http://www.jmir.org/2016/4/e84/ UR - http://dx.doi.org/10.2196/jmir.5374 UR - http://www.ncbi.nlm.nih.gov/pubmed/27089531 ID - info:doi/10.2196/jmir.5374 ER - TY - JOUR AU - Baumel, Amit AU - Schueller, M. Stephen PY - 2016/03/21 TI - Adjusting an Available Online Peer Support Platform in a Program to Supplement the Treatment of Perinatal Depression and Anxiety JO - JMIR Mental Health SP - e11 VL - 3 IS - 1 KW - online KW - peer KW - support KW - perinatal KW - postpartum KW - depression KW - anxiety N2 - Background: Perinatal depression and anxiety are common and debilitating conditions. Novel, cost effective services could improve the uptake and the impact of mental health resources among women who suffer from these conditions. E-mental health products are one example of such services. Many publically available e-mental health products exist, but these products lack validation and are not designed to be integrated into existing health care settings. Objective: The objective of the study was to present a program to use 7 Cups of Tea (7Cups), an available technological platform that provides online peer (ie, listener) based emotional support, to supplement treatment for women experiencing perinatal depression or anxiety and to summarize patient?s feedback on the resultant program. Methods: This study consisted of two stages. First, five clinicians specializing in the treatment of perinatal mood disorders received an overview of 7Cups. They provided feedback on the 7Cups platform and ways it could complement the existing treatment efforts to inform further adjustments. In the second stage, nine women with perinatal depression or anxiety used the platform for a single session and provided feedback. Results: In response to clinicians? feedback, guidelines for referring patients to use 7Cups as a supplement for treatment were created, and a training program for listeners was developed. Patients found the platform usable and useful and their attitudes toward the trained listeners were positive. Overall, patients noted a need for support outside the scheduled therapy time and believed that freely available online emotional support could help meet this need. Most patients were interested in receiving support from first time mothers and those who suffered in the past from perinatal mood disorders. Conclusions: The study results highlight the use of 7Cups as a tool to introduce accessible and available support into existing treatment for women who suffer from perinatal mood disorders. Further research should focus on the benefits accrued from such a service. However, this article highlights how a publicly available eHealth product can be leveraged to create new services in a health care setting. UR - http://mental.jmir.org/2016/1/e11/ UR - http://dx.doi.org/10.2196/mental.5335 UR - http://www.ncbi.nlm.nih.gov/pubmed/27001373 ID - info:doi/10.2196/mental.5335 ER - TY - JOUR AU - Allen, Chris AU - Vassilev, Ivaylo AU - Kennedy, Anne AU - Rogers, Anne PY - 2016/03/10 TI - Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers JO - J Med Internet Res SP - e61 VL - 18 IS - 3 KW - social media KW - patient online communities KW - long-term conditions KW - chronic disease KW - self-management KW - self-care KW - illness work KW - social networks KW - qualitative meta-synthesis N2 - Background: Recent years have seen an exponential increase in people with long-term conditions using the Internet for information and support. Prior research has examined support for long-term condition self-management through the provision of illness, everyday, and emotional work in the context of traditional offline communities. However, less is known about how communities hosted in digital spaces contribute through the creation of social ties and the mobilization of an online illness ?workforce.? Objective: The aim was to understand the negotiation of long-term condition illness work in patient online communities and how such work may assist the self-management of long-term conditions in daily life. Methods: A systematic search of qualitative papers was undertaken using various online databases for articles published since 2004. A total of 21 papers met the inclusion criteria of using qualitative methods and examined the use of peer-led online communities for those with a long-term condition. A qualitative meta-synthesis was undertaken and the review followed a line of argument synthesis. Results: The main themes identified in relation to the negotiation of self-management support were (1) redressing offline experiential information and knowledge deficits, (2) the influence of modeling and learning behaviors from others on self-management, (3) engagement that validates illness and negates offline frustrations, (4) tie formation and community building, (5) narrative expression and cathartic release, and (6) dissociative anonymity and invisibility. These translated into a line of argument synthesis in which four network mechanisms for self-management support in patient online communities were identified. These were (1) collective knowledge and identification through lived experience; (2) support, information, and engagement through readily accessible gifting relationships; (3) sociability that extends beyond illness; and (4) online disinhibition as a facilitator in the negotiation of self-management support. Conclusions: Social ties forged in online spaces provide the basis for performing relevant self-management work that can improve an individual?s illness experience, tackling aspects of self-management that are particularly difficult to meet offline. Membership in online groups can provide those living with a long-term condition with ready access to a self-management support illness workforce and illness and emotional support. The substitutability of offline illness work may be particularly important to those whose access to support offline is either limited or absent. Furthermore, such resources require little negotiation online because information and support is seemingly gifted to the community by its members. UR - http://www.jmir.org/2016/3/e61/ UR - http://dx.doi.org/10.2196/jmir.5260 UR - http://www.ncbi.nlm.nih.gov/pubmed/26965990 ID - info:doi/10.2196/jmir.5260 ER - TY - JOUR AU - Xu, Ronghua AU - Zhang, Qingpeng PY - 2016/03/10 TI - Understanding Online Health Groups for Depression: Social Network and Linguistic Perspectives JO - J Med Internet Res SP - e63 VL - 18 IS - 3 KW - mental health KW - depression KW - social media KW - information science KW - online health group KW - social network analysis N2 - Background: Mental health problems have become increasingly prevalent in the past decade. With the advance of Web 2.0 technologies, social media present a novel platform for Web users to form online health groups. Members of online health groups discuss health-related issues and mutually help one another by anonymously revealing their mental conditions, sharing personal experiences, exchanging health information, and providing suggestions and support. The conversations in online health groups contain valuable information to facilitate the understanding of their mutual help behaviors and their mental health problems. Objective: We aimed to characterize the conversations in a major online health group for major depressive disorder (MDD) patients in a popular Chinese social media platform. In particular, we intended to explain how Web users discuss depression-related issues from the perspective of the social networks and linguistic patterns revealed by the members? conversations. Methods: Social network analysis and linguistic analysis were employed to characterize the social structure and linguistic patterns, respectively. Furthermore, we integrated both perspectives to exploit the hidden relations between them. Results: We found an intensive use of self-focus words and negative affect words. In general, group members used a higher proportion of negative affect words than positive affect words. The social network of the MDD group for depression possessed small-world and scale-free properties, with a much higher reciprocity ratio and clustering coefficient value as compared to the networks of other social media platforms and classic network models. We observed a number of interesting relationships, either strong correlations or convergent trends, between the topological properties and linguistic properties of the MDD group members. Conclusions: (1) The MDD group members have the characteristics of self-preoccupation and negative thought content, according to Beck?s cognitive theory of depression; (2) the social structure of the MDD group is much stickier than those of other social media groups, indicating the tendency of mutual communications and efficient spread of information in the MDD group; and (3) the linguistic patterns of MDD members are associated with their topological positions in the social network. UR - http://www.jmir.org/2016/3/e63/ UR - http://dx.doi.org/10.2196/jmir.5042 UR - http://www.ncbi.nlm.nih.gov/pubmed/26966078 ID - info:doi/10.2196/jmir.5042 ER - TY - JOUR AU - Feinkohl, Insa AU - Flemming, Danny AU - Cress, Ulrike AU - Kimmerle, Joachim PY - 2016/03/03 TI - The Impact of Personality Factors and Preceding User Comments on the Processing of Research Findings on Deep Brain Stimulation: A Randomized Controlled Experiment in a Simulated Online Forum JO - J Med Internet Res SP - e59 VL - 18 IS - 3 KW - medical news KW - online forum KW - scientific literacy KW - epistemological beliefs KW - academic self-efficacy KW - tentativeness N2 - Background: Laypeople frequently discuss medical research findings on Web-based platforms, but little is known about whether they grasp the tentativeness that is inherent in these findings. Potential influential factors involved in understanding medical tentativeness have hardly been assessed to date. Objective: The research presented here aimed to examine the effects of personality factors and of other users? previous contributions in a Web-based forum on laypeople?s understanding of the tentativeness of medical research findings, using the example of research on deep brain stimulation. Methods: We presented 70 university students with an online news article that reported findings on applying deep brain stimulation as a novel therapeutic method for depression, which participants were unfamiliar with. In a randomized controlled experiment, we manipulated the forum such that the article was either accompanied by user comments that addressed the issue of tentativeness, by comments that did not address this issue, or the article was accompanied by no comments at all. Participants were instructed to write their own individual user comments. Their scientific literacy, epistemological beliefs, and academic self-efficacy were measured. The outcomes measured were perceived tentativeness and tentativeness addressed in the participants? own comments. Results: More sophisticated epistemological beliefs enhanced the perception of tentativeness (standardized ?=.26, P=.034). Greater scientific literacy (stand. ?=.25, P=.025) and greater academic self-efficacy (stand. ?=.31, P=.007) were both predictors of a more extensive discussion of tentativeness in participants? comments. When forum posts presented in the experiment addressed the issue of tentativeness, participants? subsequent behavior tended to be consistent with what they had read in the forum, F2,63=3.66; P=.049, ?p2=.092. Conclusions: Students? understanding of the tentativeness of research findings on deep brain stimulation in an online forum is influenced by a number of character traits and by the previous comments that were contributed to the forum by other users. There is potential for targeted modification of traits such as scientific literacy, epistemological beliefs, and academic self-efficacy to foster critical thinking in laypeople who take part in online discussions of medical research findings. UR - http://www.jmir.org/2016/3/e59/ UR - http://dx.doi.org/10.2196/jmir.4382 UR - http://www.ncbi.nlm.nih.gov/pubmed/26940848 ID - info:doi/10.2196/jmir.4382 ER - TY - JOUR AU - Holton, Sara AU - Rowe, Heather AU - Kirkman, Maggie AU - Jordan, Lynne AU - McNamee, Kathleen AU - Bayly, Christine AU - McBain, John AU - Sinnott, Vikki AU - Fisher, Jane PY - 2016/02/15 TI - Barriers to Managing Fertility: Findings From the Understanding Fertility Management in Contemporary Australia Facebook Discussion Group JO - Interact J Med Res SP - e7 VL - 5 IS - 1 KW - fertility management KW - Australia KW - Facebook KW - social media N2 - Background: As part of research investigating the complexities of managing fertility in Australia, public opinions about how Australians manage their fertility were sought from women and men. Objective: To identify public opinion about sexual and reproductive health in Australia. Methods: To ensure access to a diverse group of people throughout Australia, an online group was advertised and convened on Facebook from October through December 2013. In a closed-group moderated discussion, participants responded to questions about how people in Australia attempt to manage three aspects of fertility: avoiding pregnancy, achieving pregnancy, and difficulties conceiving. Nonidentifiable demographic information was sought; no personal accounts of fertility management were requested. The discussion transcript was analyzed thematically. Results: There were 61 female and 2 male Facebook users aged 18 to 50 years living in Australia participating in the study. Four main themes about fertility management were identified: access, geographical location, knowledge, and cost. Participants reported that young people and people from rural areas face barriers accessing contraception and fertility services. Limited knowledge about sex and reproduction and the cost of fertility services and contraception were also said to impede effective fertility management. Conclusions: Reasons for inequalities in effective fertility management that are amenable to change were identified. Facebook is an effective method for gaining insights into public opinion about sexual and reproductive health. UR - http://www.i-jmr.org/2016/1/e7/ UR - http://dx.doi.org/10.2196/ijmr.4492 UR - http://www.ncbi.nlm.nih.gov/pubmed/26878865 ID - info:doi/10.2196/ijmr.4492 ER - TY - JOUR AU - Boudreau, François AU - Moreau, Michel AU - Côté, José PY - 2016/02/11 TI - Effectiveness of Computer Tailoring Versus Peer Support Web-Based Interventions in Promoting Physical Activity Among Insufficiently Active Canadian Adults With Type 2 Diabetes: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e20 VL - 5 IS - 1 KW - physical activity KW - behavior modification KW - computer tailoring KW - personalization KW - Facebook KW - peer support KW - Internet KW - World Wide Web KW - eHealth KW - diabetes mellitus, Type 2 KW - motor activity KW - behavior therapy KW - self-help groups KW - telemedicine N2 - Background: Type 2 diabetes is a major challenge for Canadian public health authorities, and regular physical activity is a key factor in the management of this disease. Given that less than half of people with type 2 diabetes in Canada are sufficiently active to meet the Canadian Diabetes Association's guidelines, effective programs targeting the adoption of regular physical activity are in demand for this population. Many researchers have argued that Web-based interventions targeting physical activity are a promising avenue for insufficiently active populations; however, it remains unclear if this type of intervention is effective among people with type 2 diabetes. Objective: This research project aims to evaluate the effectiveness of two Web-based interventions targeting the adoption of regular aerobic physical activity among insufficiently active adult Canadian Francophones with type 2 diabetes. Methods: A 3-arm, parallel randomized controlled trial with 2 experimental groups and 1 control group was conducted in the province of Quebec, Canada. A total of 234 participants were randomized at a 1:1:1 ratio to receive an 8-week, fully automated, computer-tailored, Web-based intervention (experimental group 1); an 8-week peer support (ie, Facebook group) Web-based intervention (experimental group 2); or no intervention (control group) during the study period. Results: The primary outcome of this study is self-reported physical activity level (total min/week of moderate-intensity aerobic physical activity). Secondary outcomes are attitude, social influence, self-efficacy, type of motivation, and intention. All outcomes are assessed at baseline and 3 and 9 months after baseline with a self-reported questionnaire filled directly on the study websites. Conclusions: By evaluating and comparing the effectiveness of 2 Web-based interventions characterized by different behavior change perspectives, findings of this study will contribute to advances in the field of physical activity promotion in adult populations with type 2 diabetes. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN): ISRCTN15747108; http://www.isrctn.com/ISRCTN15747108 (Archived by WebCite at http://www.webcitation.org/6eJTi0m3r) UR - http://www.researchprotocols.org/2016/1/e20/ UR - http://dx.doi.org/10.2196/resprot.5019 UR - http://www.ncbi.nlm.nih.gov/pubmed/26869015 ID - info:doi/10.2196/resprot.5019 ER - TY - JOUR AU - Myneni, Sahiti AU - Cobb, Nathan AU - Cohen, Trevor PY - 2016/02/02 TI - In Pursuit of Theoretical Ground in Behavior Change Support Systems: Analysis of Peer-to-Peer Communication in a Health-Related Online Community JO - J Med Internet Res SP - e28 VL - 18 IS - 2 KW - behavior change KW - online social media KW - web interventions KW - smoking cessation N2 - Background: Research studies involving health-related online communities have focused on examining network structure to understand mechanisms underlying behavior change. Content analysis of the messages exchanged in these communities has been limited to the ?social support? perspective. However, existing behavior change theories suggest that message content plays a prominent role reflecting several sociocognitive factors that affect an individual?s efforts to make a lifestyle change. An understanding of these factors is imperative to identify and harness the mechanisms of behavior change in the Health 2.0 era. Objective: The objective of this work is two-fold: (1) to harness digital communication data to capture essential meaning of communication and factors affecting a desired behavior change, and (2) to understand the applicability of existing behavior change theories to characterize peer-to-peer communication in online platforms. Methods: In this paper, we describe grounded theory?based qualitative analysis of digital communication in QuitNet, an online community promoting smoking cessation. A database of 16,492 de-identified public messages from 1456 users from March 1-April 30, 2007, was used in our study. We analyzed 795 messages using grounded theory techniques to ensure thematic saturation. This analysis enabled identification of key concepts contained in the messages exchanged by QuitNet members, allowing us to understand the sociobehavioral intricacies underlying an individual?s efforts to cease smoking in a group setting. We further ascertained the relevance of the identified themes to theoretical constructs in existing behavior change theories (eg, Health Belief Model) and theoretically linked techniques of behavior change taxonomy. Results: We identified 43 different concepts, which were then grouped under 12 themes based on analysis of 795 messages. Examples of concepts include ?sleepiness,? ?pledge,? ?patch,? ?spouse,? and ?slip.? Examples of themes include ?traditions,? ?social support,? ?obstacles,? ?relapse,? and ?cravings.? Results indicate that themes consisting of member-generated strategies such as ?virtual bonfires? and ?pledges? were related to the highest number of theoretical constructs from the existing behavior change theories. In addition, results indicate that the member-generated communication content supports sociocognitive constructs from more than one behavior change model, unlike the majority of the existing theory-driven interventions. Conclusions: With the onset of mobile phones and ubiquitous Internet connectivity, online social network data reflect the intricacies of human health behavior as experienced by health consumers in real time. This study offers methodological insights for qualitative investigations that examine the various kinds of behavioral constructs prevalent in the messages exchanged among users of online communities. Theoretically, this study establishes the manifestation of existing behavior change theories in QuitNet-like online health communities. Pragmatically, it sets the stage for real-time, data-driven sociobehavioral interventions promoting healthy lifestyle modifications by allowing us to understand the emergent user needs to sustain a desired behavior change. UR - http://www.jmir.org/2016/2/e28/ UR - http://dx.doi.org/10.2196/jmir.4671 UR - http://www.ncbi.nlm.nih.gov/pubmed/26839162 ID - info:doi/10.2196/jmir.4671 ER - TY - JOUR AU - Pagoto, Sherry AU - Waring, E. Molly AU - May, N. Christine AU - Ding, Y. Eric AU - Kunz, H. Werner AU - Hayes, Rashelle AU - Oleski, L. Jessica PY - 2016/01/29 TI - Adapting Behavioral Interventions for Social Media Delivery JO - J Med Internet Res SP - e24 VL - 18 IS - 1 KW - social media KW - behavioral interventions KW - health behavior KW - online social networks UR - http://www.jmir.org/2016/1/e24/ UR - http://dx.doi.org/10.2196/jmir.5086 UR - http://www.ncbi.nlm.nih.gov/pubmed/26825969 ID - info:doi/10.2196/jmir.5086 ER - TY - JOUR AU - Nath, Chinmoy AU - Huh, Jina AU - Adupa, Kalyan Abhishek AU - Jonnalagadda, R. Siddhartha PY - 2016/01/13 TI - Website Sharing in Online Health Communities: A Descriptive Analysis JO - J Med Internet Res SP - e11 VL - 18 IS - 1 KW - online systems KW - patient empowerment KW - online health communities KW - online health community moderators KW - consumer-health informatics KW - URLs KW - Web resources N2 - Background: An increasing number of people visit online health communities to seek health information. In these communities, people share experiences and information with others, often complemented with links to different websites. Understanding how people share websites can help us understand patients? needs in online health communities and improve how peer patients share health information online. Objective: Our goal was to understand (1) what kinds of websites are shared, (2) information quality of the shared websites, (3) who shares websites, (4) community differences in website-sharing behavior, and (5) the contexts in which patients share websites. We aimed to find practical applications and implications of website-sharing practices in online health communities. Methods: We used regular expressions to extract URLs from 10 WebMD online health communities. We then categorized the URLs based on their top-level domains. We counted the number of trust codes (eg, accredited agencies? formal evaluation and PubMed authors? institutions) for each website to assess information quality. We used descriptive statistics to determine website-sharing activities. To understand the context of the URL being discussed, we conducted a simple random selection of 5 threads that contained at least one post with URLs from each community. Gathering all other posts in these threads resulted in 387 posts for open coding analysis with the goal of understanding motivations and situations in which website sharing occurred. Results: We extracted a total of 25,448 websites. The majority of the shared websites were .com (59.16%, 15,056/25,448) and WebMD internal (23.2%, 5905/25,448) websites; the least shared websites were social media websites (0.15%, 39/25,448). High-posting community members and moderators posted more websites with trust codes than low-posting community members did. The heart disease community had the highest percentage of websites containing trust codes compared to other communities. Members used websites to disseminate information, supportive evidence, resources for social support, and other ways to communicate. Conclusions: Online health communities can be used as important health care information resources for patients and caregivers. Our findings inform patients? health information?sharing activities. This information assists health care providers, informaticians, and online health information entrepreneurs and developers in helping patients and caregivers make informed choices. UR - http://www.jmir.org/2016/1/e11/ UR - http://dx.doi.org/10.2196/jmir.5237 UR - http://www.ncbi.nlm.nih.gov/pubmed/26764193 ID - info:doi/10.2196/jmir.5237 ER - TY - JOUR AU - Cole, Jennifer AU - Watkins, Chris AU - Kleine, Dorothea PY - 2016/01/06 TI - Health Advice from Internet Discussion Forums: How Bad Is Dangerous? JO - J Med Internet Res SP - e4 VL - 18 IS - 1 KW - eHealth KW - communication KW - Internet KW - social media KW - health literacy KW - health care information systems KW - information seeking KW - information science KW - Medicine 2.0 KW - Web-based and mobile health interventions N2 - Background: Concerns over online health information?seeking behavior point to the potential harm incorrect, incomplete, or biased information may cause. However, systematic reviews of health information have found few examples of documented harm that can be directly attributed to poor quality information found online. Objective: The aim of this study was to improve our understanding of the quality and quality characteristics of information found in online discussion forum websites so that their likely value as a peer-to-peer health information?sharing platform could be assessed. Methods: A total of 25 health discussion threads were selected across 3 websites (Reddit, Mumsnet, and Patient) covering 3 health conditions (human immunodeficiency virus [HIV], diabetes, and chickenpox). Assessors were asked to rate information found in the discussion threads according to 5 criteria: accuracy, completeness, how sensible the replies were, how they thought the questioner would act, and how useful they thought the questioner would find the replies. Results: In all, 78 fully completed assessments were returned by 17 individuals (8 were qualified medical doctors, 9 were not). When the ratings awarded in the assessments were analyzed, 25 of the assessments placed the discussion threads in the highest possible score band rating them between 5 and 10 overall, 38 rated them between 11 and 15, 12 rated them between 16 and 20, and 3 placed the discussion thread they assessed in the lowest rating band (21-25). This suggests that health threads on Internet discussion forum websites are more likely than not (by a factor of 4:1) to contain information of high or reasonably high quality. Extremely poor information is rare; the lowest available assessment rating was awarded only 11 times out of a possible 353, whereas the highest was awarded 54 times. Only 3 of 78 fully completed assessments rated a discussion thread in the lowest possible overall band of 21 to 25, whereas 25 of 78 rated it in the highest of 5 to 10. Quality assessments differed depending on the health condition (chickenpox appeared 17 times in the 20 lowest-rated threads, HIV twice, and diabetes once). Although assessors tended to agree on which discussion threads contained good quality information, what constituted poor quality information appeared to be more subjective. Conclusions: Most of the information assessed in this study was considered by qualified medical doctors and nonmedically qualified respondents to be of reasonably good quality. Although a small amount of information was assessed as poor, not all respondents agreed that the original questioner would have been led to act inappropriately based on the information presented. This suggests that discussion forum websites may be a useful platform through which people can ask health-related questions and receive answers of acceptable quality. UR - http://www.jmir.org/2016/1/e4/ UR - http://dx.doi.org/10.2196/jmir.5051 UR - http://www.ncbi.nlm.nih.gov/pubmed/26740148 ID - info:doi/10.2196/jmir.5051 ER - TY - JOUR AU - Carron-Arthur, Bradley AU - Ali, Kathina AU - Cunningham, Alastair John AU - Griffiths, Margaret Kathleen PY - 2015/12/01 TI - From Help-Seekers to Influential Users: A Systematic Review of Participation Styles in Online Health Communities JO - J Med Internet Res SP - e271 VL - 17 IS - 12 KW - online health community KW - participation style KW - social network KW - participation inequality KW - systematic review N2 - Background: Understanding how people participate in and contribute to online health communities (OHCs) is useful knowledge in multiple domains. It is helpful for community managers in developing strategies for building community, for organizations in disseminating information about health interventions, and for researchers in understanding the social dynamics of peer support. Objective: We sought to determine if any patterns were apparent in the nature of user participation across online health communities. Methods: The current study involved a systematic review of all studies that have investigated the nature of participation in an online health community and have provided a quantifiable method for categorizing a person based on their participation style. A systematic search yielded 20 papers. Results: Participatory styles were classified as either multidimensional (based on multiple metrics) or unidimensional (based on one metric). With respect to the multidimensional category, a total of 41 different participation styles were identified ranging from Influential Users who were leaders on the board to Topic-Focused Responders who focused on a specific topic and tended to respond to rather than initiate posts. However, there was little overlap in participation styles identified both across OHCs for different health conditions and within OHCs for specific health conditions. Five of the 41 styles emerged in more than one study (Hubs, Authorities, Facilitators, Prime Givers, and Discussants), but the remainder were reported in only one study. The focus of the unidimensional studies was on level of engagement and particularly on high-engaged users. Eight different metrics were used to evaluate level of engagement with the greatest focus on frequency of posts. Conclusions: With the exception of high-engaged users based on high post frequency, the current review found little evidence for consistent participatory styles across different health communities. However, this area of research is in its infancy, with most of the studies included in the review being published in the last 2 years. Nevertheless, the review delivers a nomenclature for OHC participation styles and metrics and discusses important methodological issues that will provide a basis for future comparative research in the area. Further studies are required to systematically investigate a range of participatory styles, to investigate their association with different types of online health communities and to determine the contribution of different participatory styles within and across online health communities. UR - http://www.jmir.org/2015/12/e271/ UR - http://dx.doi.org/10.2196/jmir.4705 UR - http://www.ncbi.nlm.nih.gov/pubmed/26627369 ID - info:doi/10.2196/jmir.4705 ER - TY - JOUR AU - Bientzle, Martina AU - Griewatz, Jan AU - Kimmerle, Joachim AU - Küppers, Julia AU - Cress, Ulrike AU - Lammerding-Koeppel, Maria PY - 2015/11/25 TI - Impact of Scientific Versus Emotional Wording of Patient Questions on Doctor-Patient Communication in an Internet Forum: A Randomized Controlled Experiment with Medical Students JO - J Med Internet Res SP - e268 VL - 17 IS - 11 KW - medicine KW - medical education KW - communication KW - Internet KW - counseling N2 - Background: Medical expert forums on the Internet play an increasing role in patient counseling. Therefore, it is important to understand how doctor-patient communication is influenced in such forums both by features of the patients or advice seekers, as expressed in their forum queries, and by characteristics of the medical experts involved. Objective: In this experimental study, we aimed to examine in what way (1) the particular wording of patient queries and (2) medical experts? therapeutic health concepts (for example, beliefs around adhering to a distinctly scientific understanding of diagnosis and treatment and a clear focus on evidence-based medicine) impact communication behavior of the medical experts in an Internet forum. Methods: Advanced medical students (in their ninth semester of medical training) were recruited as participants. Participation in the online forum was part of a communication training embedded in a gynecology course. We first measured their biomedical therapeutic health concept (hereinafter called ?biomedical concept?). Then they participated in an online forum where they answered fictitious patient queries about mammography screening that either included scientific or emotional wording in a between-group design. We analyzed participants? replies with regard to the following dimensions: their use of scientific or emotional wording, the amount of communicated information, and their attempt to build a positive doctor-patient relationship. Results: This study was carried out with 117 medical students (73 women, 41 men, 3 did not indicate their sex). We found evidence that both the wording of patient queries and the participants? biomedical concept influenced participants? response behavior. They answered emotional patient queries in a more emotional way (mean 0.92, SD 1.02) than scientific patient queries (mean 0.26, SD 0.55; t74=3.48, P<.001, d=0.81). We also found a significant interaction effect between participants? use of scientific or emotional wording and type of patient query (F2,74=10.29, P<.01, partial ?2=0.12) indicating that participants used scientific wording independently of the type of patient query, whereas they used emotional wording particularly when replying to emotional patient queries. In addition, the more pronounced the medical experts? biomedical concept was, the more scientifically (adjusted ?=.20; F1,75=2.95, P=.045) and the less emotionally (adjusted ?=?.22; F1,74=3.66, P=.03) they replied to patient queries. Finally, we found that participants? biomedical concept predicted their engagement in relationship building (adjusted ?=?.26): The more pronounced their biomedical concept was, the less they attempted to build a positive doctor-patient relationship (F1,74=5.39, P=.02). Conclusions: Communication training for medical experts could aim to address this issue of recognizing patients? communication styles and needs in certain situations in order to teach medical experts how to take those aspects adequately into account. In addition, communication training should also make medical experts aware of their individual therapeutic health concepts and the consequential implications in communication situations. UR - http://www.jmir.org/2015/11/e268/ UR - http://dx.doi.org/10.2196/jmir.4597 UR - http://www.ncbi.nlm.nih.gov/pubmed/26607233 ID - info:doi/10.2196/jmir.4597 ER - TY - JOUR AU - Das, Anita AU - Faxvaag, Arild AU - Svanæs, Dag PY - 2015/11/24 TI - The Impact of an eHealth Portal on Health Care Professionals? Interaction with Patients: Qualitative Study JO - J Med Internet Res SP - e267 VL - 17 IS - 11 KW - bariatric surgery KW - online communication KW - eHealth KW - patient KW - health care KW - Web 2.0 N2 - Background: People who undergo weight loss surgery require a comprehensive treatment program to achieve successful outcomes. eHealth solutions, such as secure online portals, create new opportunities for improved health care delivery and care, but depend on the organizational delivery systems and on the health care professionals providing it. So far, these have received limited attention and the overall adoption of eHealth solutions remains low. In this study, a secure eHealth portal was implemented in a bariatric surgery clinic and offered to their patients. During the study period of 6 months, 60 patients and 5 health care professionals had access. The portal included patient information, self-management tools, and communication features for online dialog with peers and health care providers at the bariatric surgery clinic. Objective: The aim of this study was to characterize and assess the impact of an eHealth portal on health care professionals? interaction with patients in bariatric surgery. Methods: This qualitative case study involved a field study consisting of contextual interviews at the clinic involving observing and speaking with personnel in their actual work environment. Semi-structured in-depth interviews were conducted with health care professionals who interacted with patients through the portal. Analysis of the collected material was done inductively using thematic analysis. Results: The analysis revealed two main dimensions of using an eHealth portal in bariatric surgery: the transparency it represents and the responsibility that follows by providing it. The professionals reported the eHealth portal as (1) a source of information, (2) a gateway to approach and facilitate the patients, (3) a medium for irrevocable postings, (4) a channel that exposes responsibility and competence, and (5) a tool in the clinic. Conclusions: By providing an eHealth portal to patients in a bariatric surgery program, health care professionals can observe patients? writings and revelations thereby capturing patient challenges and acting and implementing measures. Interacting with patients through the portal can prevent dropouts and deterioration of patients? health. However, professionals report on organizational challenges and personal constraints related to communicating with patients in writing online. Further development of guidelines and education of health care professionals about how to handle, prioritize, communicate, and facilitate patients online is required in addition to increased attention to the organizational infrastructures and incentives for enabling such solutions in health care. UR - http://www.jmir.org/2015/11/e267/ UR - http://dx.doi.org/10.2196/jmir.4950 UR - http://www.ncbi.nlm.nih.gov/pubmed/26601678 ID - info:doi/10.2196/jmir.4950 ER - TY - JOUR AU - Mattsson, Susanne AU - Olsson, Gustaf Erik Martin AU - Alfonsson, Sven AU - Johansson, Birgitta AU - Carlsson, Maria PY - 2015/11/20 TI - Measuring Use of Health-Related Support on the Internet: Development of the Health Online Support Questionnaire (HOSQ) JO - J Med Internet Res SP - e266 VL - 17 IS - 11 KW - social support KW - questionnaires KW - oncology KW - Internet N2 - Background: Social support plays an important role for the perceived health in people with health problems and chronic diseases. Provision of different kinds of support during the disease trajectory is crucial for many people. Online support is ubiquitous and represents a promising modality for people with chronic diseases. There are no existing instruments that measure various aspects of online support. Objective: The objective of this study was to create a generic questionnaire regarding health-related support online that can be applied to people with various health problems and illnesses. Additionally, we wanted to test the questionnaire in a cancer population to assess its adequacy in the context of severe disease. Methods: Initial items for the Health Online Support Questionnaire (HOSQ) were inspired by sociologist James House regarding social support. An exploratory factor analysis was conducted in healthy persons or with minor health problems (n=243) on 31 initial items. The scale was reduced to 18 items and the internal consistency and reliability of the scale was examined along with content validity. Further validation was conducted by a confirmatory analysis on the 18-item scale in a cancer population (n=215). In addition, data on demographics, health problems experienced, and Internet use were collected. Results: The exploratory factor analysis on the final 18-item scale resulted in 2 factors. After scrutinizing the content, these factors were labeled ?reading? and ?interacting? and they demonstrated good internal consistency (Cronbach alphas .88 and .77, respectively). The factors were confirmed in the cancer population. The response pattern revealed expected differences both between the interaction and reading scales and according to age, gender, education, and health problems thereby supporting the validity of the HOSQ. Conclusions: The HOSQ may be a reliable and valid instrument for measuring the use of online support for people with health problems, but the results ought to be replicated in more studies to confirm the results for different diagnoses. If the results of this study are corroborated by future studies, the HOSQ may be used as a basis for the development of different forms of support on the Internet. UR - http://www.jmir.org/2015/11/e266/ UR - http://dx.doi.org/10.2196/jmir.4425 UR - http://www.ncbi.nlm.nih.gov/pubmed/26589638 ID - info:doi/10.2196/jmir.4425 ER - TY - JOUR AU - Oksanen, Atte AU - Garcia, David AU - Sirola, Anu AU - Näsi, Matti AU - Kaakinen, Markus AU - Keipi, Teo AU - Räsänen, Pekka PY - 2015/11/12 TI - Pro-Anorexia and Anti-Pro-Anorexia Videos on YouTube: Sentiment Analysis of User Responses JO - J Med Internet Res SP - e256 VL - 17 IS - 11 KW - eating disorders KW - anorexia KW - social media KW - emotions N2 - Background: Pro-anorexia communities exist online and encourage harmful weight loss and weight control practices, often through emotional content that enforces social ties within these communities. User-generated responses to videos that directly oppose pro-anorexia communities have not yet been researched in depth. Objective: The aim was to study emotional reactions to pro-anorexia and anti-pro-anorexia online content on YouTube using sentiment analysis. Methods: Using the 50 most popular YouTube pro-anorexia and anti-pro-anorexia user channels as a starting point, we gathered data on users, their videos, and their commentators. A total of 395 anorexia videos and 12,161 comments were analyzed using positive and negative sentiments and ratings submitted by the viewers of the videos. The emotional information was automatically extracted with an automatic sentiment detection tool whose reliability was tested with human coders. Ordinary least squares regression models were used to estimate the strength of sentiments. The models controlled for the number of video views and comments, number of months the video had been on YouTube, duration of the video, uploader?s activity as a video commentator, and uploader?s physical location by country. Results: The 395 videos had more than 6 million views and comments by almost 8000 users. Anti-pro-anorexia video comments expressed more positive sentiments on a scale of 1 to 5 (adjusted prediction [AP] 2.15, 95% CI 2.11-2.19) than did those of pro-anorexia videos (AP 2.02, 95% CI 1.98-2.06). Anti-pro-anorexia videos also received more likes (AP 181.02, 95% CI 155.19-206.85) than pro-anorexia videos (AP 31.22, 95% CI 31.22-37.81). Negative sentiments and video dislikes were equally distributed in responses to both pro-anorexia and anti-pro-anorexia videos. Conclusions: Despite pro-anorexia content being widespread on YouTube, videos promoting help for anorexia and opposing the pro-anorexia community were more popular, gaining more positive feedback and comments than pro-anorexia videos. Thus, the anti-pro-anorexia content provided a user-generated counterforce against pro-anorexia content on YouTube. Professionals working with young people should be aware of the social media dynamics and versatility of user-generated eating disorder content online. UR - http://www.jmir.org/2015/11/e256/ UR - http://dx.doi.org/10.2196/jmir.5007 UR - http://www.ncbi.nlm.nih.gov/pubmed/26563678 ID - info:doi/10.2196/jmir.5007 ER - TY - JOUR AU - Pagoto, L. Sherry AU - Waring, E. Molly AU - Schneider, L. Kristin AU - Oleski, L. Jessica AU - Olendzki, Effie AU - Hayes, B. Rashelle AU - Appelhans, M. Bradley AU - Whited, C. Matthew AU - Busch, M. Andrew AU - Lemon, C. Stephenie PY - 2015/10/23 TI - Twitter-Delivered Behavioral Weight-Loss Interventions: A Pilot Series JO - JMIR Res Protoc SP - e123 VL - 4 IS - 4 KW - social networks KW - Twitter KW - obesity KW - weight loss KW - online social networking KW - peer-to-peer health care KW - digital health N2 - Background: Lifestyle interventions are efficacious at reducing risk for diabetes and cardiovascular disease but have not had a significant public health impact given high cost and patient and provider burden. Objective: Online social networks may reduce the burden of lifestyle interventions to the extent that they displace in-person visits and may enhance opportunities for social support for weight loss. Methods: We conducted an iterative series of pilot studies to evaluate the feasibility and acceptability of using online social networks to deliver a lifestyle intervention. Results: In Study 1 (n=10), obese participants with depression received lifestyle counseling via 12 weekly group visits and a private group formed using the online social network, Twitter. Mean weight loss was 2.3 pounds (SD 7.7; range -19.2 to 8.2) or 1.2% (SD 3.6) of baseline weight. A total of 67% (6/9) of participants completing exit interviews found the support of the Twitter group at least somewhat useful. In Study 2 (n=11), participants were not depressed and were required to be regular users of social media. Participants lost, on average, 5.6 pounds (SD 6.3; range -15 to 0) or 3.0% (SD 3.4) of baseline weight, and 100% (9/9) completing exit interviews found the support of the Twitter group at least somewhat useful. To explore the feasibility of eliminating in-person visits, in Study 3 (n=12), we delivered a 12-week lifestyle intervention almost entirely via Twitter by limiting the number of group visits to one, while using the same inclusion criteria as that used in Study 2. Participants lost, on average, 5.4 pounds (SD 6.4; range -14.2 to 3.9) or 3.0% (SD 3.1) of baseline weight, and 90% (9/10) completing exit interviews found the support of the Twitter group at least somewhat useful. Findings revealed that a private Twitter weight-loss group was both feasible and acceptable for many patients, particularly among regular users of social media. Conclusions: Future research should evaluate the efficacy and cost-effectiveness of online social network-delivered lifestyle interventions relative to traditional modalities. UR - http://www.researchprotocols.org/2015/4/e123/ UR - http://dx.doi.org/10.2196/resprot.4864 UR - http://www.ncbi.nlm.nih.gov/pubmed/26500186 ID - info:doi/10.2196/resprot.4864 ER - TY - JOUR AU - Cheung, Derek Yee Tak AU - Chan, Helen Ching Han AU - Lai, Jonah Chi-Keung AU - Chan, Vivian Wai Fung AU - Wang, Ping Man AU - Li, William Ho Cheung AU - Chan, Chee Sophia Siu AU - Lam, Tai-Hing PY - 2015/10/22 TI - Using WhatsApp and Facebook Online Social Groups for Smoking Relapse Prevention for Recent Quitters: A Pilot Pragmatic Cluster Randomized Controlled Trial JO - J Med Internet Res SP - e238 VL - 17 IS - 10 KW - social networking KW - social media KW - smoking cessation KW - relapse prevention N2 - Background: Quit attempters often have episodes of smoking relapse before they eventually quit. Interactive text messaging through mobile phones has been shown to increase abstinence. This service can be potentially applied on the platform of a social networking service to help quitters maintain abstinence. Objective: Our aim was to determine if the group discussion and reminders via the WhatsApp or Facebook social group were effective to prevent smoking relapse in quitters who had stopped smoking recently. Methods: This was a single-blinded, parallel, 3-arm pilot cluster randomized controlled trial allocating recent quitters, who had completed an 8-week treatment and reported abstinence for at least 7 days, to WhatsApp (n=42), Facebook (n=40), and a control group (n=54). The 2 intervention groups participated in a 2-month online group discussion with either WhatsApp or Facebook moderated by a trained smoking cessation counselor and received a self-help booklet on smoking cessation. The control group only received the booklet. The primary outcome was the 2- and 6-month relapse rates, defined as the proportion of participants who smoked at least 5 cigarettes in 3 consecutive days. Results: Fewer participants in the WhatsApp group (17%, 7/42) reported relapse than the control group (42.6%, 23/54) at 2-month (OR 0.27, 95% CI 0.10-0.71) and 6-month (40.5%, 17/42 vs 61.1%, 33/54; OR 0.43, 95% CI 0.19-0.99) follow-ups. The Facebook group (30.0%, 12/40) had an insignificantly lower relapse rate than the control group (42.6%, 23/54) at 2-month (OR 0.58, 95% CI 0.24-1.37) and 6-month (52.5%, 13/40 vs 61.1%, 33/54; OR 0.70, 95% CI 0.31-1.61) follow-ups. The WhatsApp social groups had more moderators? posts (median 60, IQR 25 vs median 32, IQR 7; P=.05) and participants? posts (median 35, IQR 50 vs median 6, IQR 9; P=.07) than their Facebook counterparts, but the difference was insignificant. Conclusions: The intervention via the WhatsApp social group was effective in reducing relapse probably because of enhanced discussion and social support. Inactive discussion in the Facebook social group might have attributed to the lower effectiveness. ClinicalTrial: Clinicaltrials.gov NCT02007369; https://clinicaltrials.gov/show/NCT02007369 (Archived by WebCite® at http://www.webcitation.org/6c3RbltQG) UR - http://www.jmir.org/2015/10/e238/ UR - http://dx.doi.org/10.2196/jmir.4829 UR - http://www.ncbi.nlm.nih.gov/pubmed/26494159 ID - info:doi/10.2196/jmir.4829 ER - TY - JOUR AU - Chen, T. Annie AU - Zhu, Shu-Hong AU - Conway, Mike PY - 2015/09/29 TI - What Online Communities Can Tell Us About Electronic Cigarettes and Hookah Use: A Study Using Text Mining and Visualization Techniques JO - J Med Internet Res SP - e220 VL - 17 IS - 9 KW - electronic cigarettes KW - hookah smoking KW - cigarettes KW - tobacco products KW - social media KW - text mining N2 - Background: The rise in popularity of electronic cigarettes (e-cigarettes) and hookah over recent years has been accompanied by some confusion and uncertainty regarding the development of an appropriate regulatory response towards these emerging products. Mining online discussion content can lead to insights into people?s experiences, which can in turn further our knowledge of how to address potential health implications. In this work, we take a novel approach to understanding the use and appeal of these emerging products by applying text mining techniques to compare consumer experiences across discussion forums. Objective: This study examined content from the websites Vapor Talk, Hookah Forum, and Reddit to understand people?s experiences with different tobacco products. Our investigation involves three parts. First, we identified contextual factors that inform our understanding of tobacco use behaviors, such as setting, time, social relationships, and sensory experience, and compared the forums to identify the ones where content on these factors is most common. Second, we compared how the tobacco use experience differs with combustible cigarettes and e-cigarettes. Third, we investigated differences between e-cigarette and hookah use. Methods: In the first part of our study, we employed a lexicon-based extraction approach to estimate prevalence of contextual factors, and then we generated a heat map based on these estimates to compare the forums. In the second and third parts of the study, we employed a text mining technique called topic modeling to identify important topics and then developed a visualization, Topic Bars, to compare topic coverage across forums. Results: In the first part of the study, we identified two forums, Vapor Talk Health & Safety and the Stopsmoking subreddit, where discussion concerning contextual factors was particularly common. The second part showed that the discussion in Vapor Talk Health & Safety focused on symptoms and comparisons of combustible cigarettes and e-cigarettes, and the Stopsmoking subreddit focused on psychological aspects of quitting. Last, we examined the discussion content on Vapor Talk and Hookah Forum. Prominent topics included equipment, technique, experiential elements of use, and the buying and selling of equipment. Conclusions: This study has three main contributions. Discussion forums differ in the extent to which their content may help us understand behaviors with potential health implications. Identifying dimensions of interest and using a heat map visualization to compare across forums can be helpful for identifying forums with the greatest density of health information. Additionally, our work has shown that the quitting experience can potentially be very different depending on whether or not e-cigarettes are used. Finally, e-cigarette and hookah forums are similar in that members represent a ?hobbyist culture? that actively engages in information exchange. These differences have important implications for both tobacco regulation and smoking cessation intervention design. UR - http://www.jmir.org/2015/9/e220/ UR - http://dx.doi.org/10.2196/jmir.4517 UR - http://www.ncbi.nlm.nih.gov/pubmed/26420469 ID - info:doi/10.2196/jmir.4517 ER - TY - JOUR AU - Rasku, Jyrki AU - Pyykkö, Ilmari AU - Levo, Hilla AU - Kentala, Erna AU - Manchaiah, Vinaya PY - 2015/09/03 TI - Disease Profiling for Computerized Peer Support of Ménière's Disease JO - JMIR Rehabil Assist Technol SP - e9 VL - 2 IS - 2 KW - Ménière?s disease KW - diagnosis KW - disease profiling KW - peer-support KW - participation restriction KW - activity limitation KW - enablement KW - machine learning N2 - Background: Peer support is an emerging form of person-driven active health care. Chronic conditions such as Ménière?s disease (a disorder of the inner ear) need continuing rehabilitation and support that is beyond the scope of routine clinical medical practice. Hence, peer-support programs can be helpful in supplementing some of the rehabilitation aspects. Objective: The aim of this study was to design a computerized data collection system for the peer support of Menière?s disease that is capable in profiling the subject for diagnosis and in assisting with problem solving. Methods: The expert program comprises several data entries focusing on symptoms, activity limitations, participation restrictions, quality of life, attitude and personality trait, and an evaluation of disease-specific impact. Data was collected from 740 members of the Finnish Ménière?s Federation and utilized in the construction and evaluation of the program. Results: The program verifies the diagnosis of a person by using an expert system, and the inference engine selects 50 cases with matched symptom severity by using a nearest neighbor algorithm. These cases are then used as a reference group to compare with the person?s attitude, sense of coherence, and anxiety. The program provides feedback for the person and uses this information to guide the person through the problem-solving process. Conclusions: This computer-based peer-support program is the first example of an advanced computer-oriented approach using artificial intelligence, both in the profiling of the disease and in profiling the person?s complaints for hearing loss, tinnitus, and vertigo. UR - http://rehab.jmir.org/2015/2/e9/ UR - http://dx.doi.org/10.2196/rehab.4109 UR - http://www.ncbi.nlm.nih.gov/pubmed/28582248 ID - info:doi/10.2196/rehab.4109 ER - TY - JOUR AU - Park, Albert AU - Hartzler, L. Andrea AU - Huh, Jina AU - McDonald, W. David AU - Pratt, Wanda PY - 2015/08/31 TI - Automatically Detecting Failures in Natural Language Processing Tools for Online Community Text JO - J Med Internet Res SP - e212 VL - 17 IS - 8 KW - UMLS KW - natural language processing KW - automatic data processing KW - quantitative evaluation KW - information extraction N2 - Background: The prevalence and value of patient-generated health text are increasing, but processing such text remains problematic. Although existing biomedical natural language processing (NLP) tools are appealing, most were developed to process clinician- or researcher-generated text, such as clinical notes or journal articles. In addition to being constructed for different types of text, other challenges of using existing NLP include constantly changing technologies, source vocabularies, and characteristics of text. These continuously evolving challenges warrant the need for applying low-cost systematic assessment. However, the primarily accepted evaluation method in NLP, manual annotation, requires tremendous effort and time. Objective: The primary objective of this study is to explore an alternative approach?using low-cost, automated methods to detect failures (eg, incorrect boundaries, missed terms, mismapped concepts) when processing patient-generated text with existing biomedical NLP tools. We first characterize common failures that NLP tools can make in processing online community text. We then demonstrate the feasibility of our automated approach in detecting these common failures using one of the most popular biomedical NLP tools, MetaMap. Methods: Using 9657 posts from an online cancer community, we explored our automated failure detection approach in two steps: (1) to characterize the failure types, we first manually reviewed MetaMap?s commonly occurring failures, grouped the inaccurate mappings into failure types, and then identified causes of the failures through iterative rounds of manual review using open coding, and (2) to automatically detect these failure types, we then explored combinations of existing NLP techniques and dictionary-based matching for each failure cause. Finally, we manually evaluated the automatically detected failures. Results: From our manual review, we characterized three types of failure: (1) boundary failures, (2) missed term failures, and (3) word ambiguity failures. Within these three failure types, we discovered 12 causes of inaccurate mappings of concepts. We used automated methods to detect almost half of 383,572 MetaMap?s mappings as problematic. Word sense ambiguity failure was the most widely occurring, comprising 82.22% of failures. Boundary failure was the second most frequent, amounting to 15.90% of failures, while missed term failures were the least common, making up 1.88% of failures. The automated failure detection achieved precision, recall, accuracy, and F1 score of 83.00%, 92.57%, 88.17%, and 87.52%, respectively. Conclusions: We illustrate the challenges of processing patient-generated online health community text and characterize failures of NLP tools on this patient-generated health text, demonstrating the feasibility of our low-cost approach to automatically detect those failures. Our approach shows the potential for scalable and effective solutions to automatically assess the constantly evolving NLP tools and source vocabularies to process patient-generated text. UR - http://www.jmir.org/2015/8/e212/ UR - http://dx.doi.org/10.2196/jmir.4612 UR - http://www.ncbi.nlm.nih.gov/pubmed/26323337 ID - info:doi/10.2196/jmir.4612 ER - TY - JOUR AU - Attai, J. Deanna AU - Cowher, S. Michael AU - Al-Hamadani, Mohammed AU - Schoger, M. Jody AU - Staley, C. Alicia AU - Landercasper, Jeffrey PY - 2015/07/30 TI - Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey JO - J Med Internet Res SP - e188 VL - 17 IS - 7 KW - breast cancer KW - education KW - social support KW - social media KW - patient outcome assessment N2 - Background: Despite reported benefits, many women do not attend breast cancer support groups. Abundant online resources for support exist, but information regarding the effectiveness of participation is lacking. We report the results of a Twitter breast cancer support community participant survey. Objective: The aim was to determine the effectiveness of social media as a tool for breast cancer patient education and decreasing anxiety. Methods: The Breast Cancer Social Media Twitter support community (#BCSM) began in July 2011. Institutional review board approval with a waiver of informed consent was obtained for a deidentified survey that was posted for 2 weeks on Twitter and on the #BCSM blog and Facebook page. Results: There were 206 respondents to the survey. In all, 92.7% (191/206) were female. Respondents reported increased knowledge about breast cancer in the following domains: overall knowledge (80.9%, 153/189), survivorship (85.7%, 162/189), metastatic breast cancer (79.4%, 150/189), cancer types and biology (70.9%, 134/189), clinical trials and research (66.1%, 125/189), treatment options (55.6%, 105/189), breast imaging (56.6%, 107/189), genetic testing and risk assessment (53.9%, 102/189), and radiotherapy (43.4%, 82/189). Participation led 31.2% (59/189) to seek a second opinion or bring additional information to the attention of their treatment team and 71.9% (136/189) reported plans to increase their outreach and advocacy efforts as a result of participation. Levels of reported anxiety before and after participation were analyzed: 29 of 43 (67%) patients who initially reported ?high or extreme? anxiety reported ?low or no? anxiety after participation (P<.001). Also, no patients initially reporting low or no anxiety before participation reported an increase to high or extreme anxiety after participation. Conclusions: This study demonstrates that breast cancer patients? perceived knowledge increases and their anxiety decreases by participation in a Twitter social media support group. UR - http://www.jmir.org/2015/7/e188/ UR - http://dx.doi.org/10.2196/jmir.4721 UR - http://www.ncbi.nlm.nih.gov/pubmed/26228234 ID - info:doi/10.2196/jmir.4721 ER - TY - JOUR AU - Poole, Ria AU - Smith, Daniel AU - Simpson, Sharon PY - 2015/07/08 TI - How Patients Contribute to an Online Psychoeducation Forum for Bipolar Disorder: A Virtual Participant Observation Study JO - JMIR Mental Health SP - e21 VL - 2 IS - 3 KW - bipolar disorder KW - psychoeducation KW - Internet KW - forum KW - qualitative N2 - Background: In a recent exploratory randomized controlled trial, an online psychoeducation intervention for bipolar disorder has been found to be feasible and acceptable to patients and may positively impact on their self-management behaviors and quality of life. Objective: The objective of the study was to investigate how these patients contribute to an online forum for bipolar disorder and the issues relevant for them. Methods: Participants in the intervention arm of the Bipolar Interactive PsychoEDucation (?BIPED?) trial were invited to contribute to the Beating Bipolar forum alongside receiving interactive online psychoeducation modules. Within this virtual participant observation study, forum posts were analyzed using thematic analysis, incorporating aspects of discourse analysis. Results: The key themes which arose from the forum posts included: medication, employment, stigma, social support, coping strategies, insight and acceptance, the life chart, and negative experiences of health care. Participants frequently provided personal narratives relating to their history of bipolar disorder, life experiences, and backgrounds, which often contained emotive language and humor. They regularly sought and offered advice, and expressed encouragement and empathy. The forum would have benefitted from more users to offer a greater support network with more diverse views and experiences. Conclusions: Online forums are inexpensive to provide and may offer peer support and the opportunity for patients to share their experiences and explore issues related to their illness anonymously. Future research should focus on how to enhance patient engagement with online health care forums. Trial Registration: ISRCTN81375447; http://www.isrctn.com/ISRCTN81375447 (Archived by WebCite at http://www.webcitation.org/6YzWtHUqu). UR - http://mental.jmir.org/2015/3/e21/ UR - http://dx.doi.org/10.2196/mental.4123 UR - http://www.ncbi.nlm.nih.gov/pubmed/26543925 ID - info:doi/10.2196/mental.4123 ER - TY - JOUR AU - Koschack, Janka AU - Weibezahl, Lara AU - Friede, Tim AU - Himmel, Wolfgang AU - Makedonski, Philip AU - Grabowski, Jens PY - 2015/07/01 TI - Scientific Versus Experiential Evidence: Discourse Analysis of the Chronic Cerebrospinal Venous Insufficiency Debate in a Multiple Sclerosis Forum JO - J Med Internet Res SP - e159 VL - 17 IS - 7 KW - multiple sclerosis KW - venous insufficiency KW - Internet KW - social media KW - cognitive dissonance KW - qualitative research N2 - Background: The vascular hypothesis of multiple sclerosis (MS), called chronic cerebrospinal venous insufficiency (CCSVI), and its treatment (known as liberation therapy) was immediately rejected by experts but enthusiastically gripped by patients who shared their experiences with other patients worldwide by use of social media, such as patient online forums. Contradictions between scientific information and lay experiences may be a source of distress for MS patients, but we do not know how patients perceive and deal with these contradictions. Objective: We aimed to understand whether scientific and experiential knowledge were experienced as contradictory in MS patient online forums and, if so, how these contradictions were resolved and how patients tried to reconcile the CCSVI debate with their own illness history and experience. Methods: By using critical discourse analysis, we studied CCSVI-related posts in the patient online forum of the German MS Society in a chronological order from the first post mentioning CCSVI to the time point when saturation was reached. For that time period, a total of 117 CCSVI-related threads containing 1907 posts were identified. We analyzed the interaction and communication practices of and between individuals, looked for the relation between concrete subtopics to identify more abstract discourse strands, and tried to reveal discourse positions explaining how users took part in the CCSVI discussion. Results: There was an emotionally charged debate about CCSVI which could be generalized to 2 discourse strands: (1) the ?downfall of the professional knowledge providers? and (2) the ?rise of the nonprofessional treasure trove of experience.? The discourse strands indicated that the discussion moved away from the question whether scientific or experiential knowledge had more evidentiary value. Rather, the question whom to trust (ie, scientists, fellow sufferers, or no one at all) was of fundamental significance. Four discourse positions could be identified by arranging them into the dimensions ?trust in evidence-based knowledge,? ?trust in experience-based knowledge,? and ?subjectivity? (ie, the emotional character of contributions manifested by the use of popular rhetoric that seemed to mask a deep personal involvement). Conclusions: By critical discourse analysis of the CCSVI discussion in a patient online forum, we reconstruct a lay discourse about the evidentiary value of knowledge. We detected evidence criteria in this lay discourse that are different from those in the expert discourse. But we should be cautious to interpret this dissociation as a sign of an intellectual incapability to understand scientific evidence or a naïve trust in experiential knowledge. Instead, it might be an indication of cognitive dissonance reduction to protect oneself against contradictory information. UR - http://www.jmir.org/2015/7/e159/ UR - http://dx.doi.org/10.2196/jmir.4103 UR - http://www.ncbi.nlm.nih.gov/pubmed/26133525 ID - info:doi/10.2196/jmir.4103 ER - TY - JOUR AU - Schroeder, B. Emily AU - Desai, Jay AU - Schmittdiel, A. Julie AU - Paolino, R. Andrea AU - Schneider, L. Jennifer AU - Goodrich, K. Glenn AU - Lawrence, M. Jean AU - Newton, M. Katherine AU - Nichols, A. Gregory AU - O'Connor, J. Patrick AU - Fitz-Randolph, Marcy AU - Steiner, F. John PY - 2015/06/30 TI - An Innovative Approach to Informing Research: Gathering Perspectives on Diabetes Care Challenges From an Online Patient Community JO - Interact J Med Res SP - e13 VL - 4 IS - 2 KW - social networking KW - diabetes mellitus KW - quality of health care KW - patient centered outcome research N2 - Background: Funding agencies and researchers increasingly recognize the importance of patient stakeholder engagement in research. Despite calls for greater patient engagement, few studies have engaged a broad-based online community of patient stakeholders in the early stages of the research development process. Objective: The objective of our study was to inform a research priority-setting agenda by using a Web-based survey to gather perceptions of important and difficult aspects of diabetes care from patient members of a social networking site-based community. Methods: Invitations to participate in a Web-based survey were sent by email to members of the PatientsLikeMe online diabetes community. The survey asked both quantitative and qualitative questions addressing individuals? level of difficulty with diabetes care, provider communication, medication management, diet and exercise, and relationships with others. Qualitative responses were analyzed using content analysis. Results: Of 6219 PatientsLikeMe members with diabetes who were sent survey invitations, 1044 (16.79%) opened the invitation and 320 (5.15% of 6219; 30.65% of 1044) completed the survey within 23 days. Of the 320 respondents, 33 (10.3%) reported having Type 1 diabetes; 107 (33.4%), Type 2 diabetes and taking insulin; and 180 (56.3%), Type 2 diabetes and taking oral agents or controlling their diabetes with lifestyle modifications. Compared to 2005-2010 National Health and Nutrition Examination Survey data for individuals with diabetes, our respondents were younger (mean age 55.8 years, SD 9.9 vs 59.4 years, SE 0.5); less likely to be male (111/320, 34.6% vs 48.4%); and less likely to be a racial or ethnic minority (40/312, 12.8% vs 37.5%). Of 29 potential challenges in diabetes care, 19 were categorized as difficult by 20% or more of respondents. Both quantitative and qualitative results indicated that top patient challenges were lifestyle concerns (diet, physical activity, weight, and stress) and interpersonal concerns (trying not to be a burden to others, getting support from family/friends). In our quantitative analysis, similar concerns were expressed across patient subgroups. Conclusions: Lifestyle and interpersonal factors were particularly challenging for our online sample of adults with Type 1 or Type 2 diabetes. Our study demonstrates the innovative use of social networking sites and online communities to gather rapid, meaningful, and relevant patient perspectives that can be used to inform the development of research agendas. UR - http://www.i-jmr.org/2015/2/e13/ UR - http://dx.doi.org/10.2196/ijmr.3856 UR - http://www.ncbi.nlm.nih.gov/pubmed/26126421 ID - info:doi/10.2196/ijmr.3856 ER - TY - JOUR AU - van Mierlo, Trevor AU - Hyatt, Douglas AU - Ching, T. Andrew PY - 2015/06/25 TI - Mapping Power Law Distributions in Digital Health Social Networks: Methods, Interpretations, and Practical Implications JO - J Med Internet Res SP - e160 VL - 17 IS - 6 KW - social networks KW - eHealth KW - 1% rule KW - Pareto Principal KW - power law KW - 90-9-1 principle KW - moderated support KW - peer-to-peer support N2 - Background: Social networks are common in digital health. A new stream of research is beginning to investigate the mechanisms of digital health social networks (DHSNs), how they are structured, how they function, and how their growth can be nurtured and managed. DHSNs increase in value when additional content is added, and the structure of networks may resemble the characteristics of power laws. Power laws are contrary to traditional Gaussian averages in that they demonstrate correlated phenomena. Objectives: The objective of this study is to investigate whether the distribution frequency in four DHSNs can be characterized as following a power law. A second objective is to describe the method used to determine the comparison. Methods: Data from four DHSNs?Alcohol Help Center (AHC), Depression Center (DC), Panic Center (PC), and Stop Smoking Center (SSC)?were compared to power law distributions. To assist future researchers and managers, the 5-step methodology used to analyze and compare datasets is described. Results: All four DHSNs were found to have right-skewed distributions, indicating the data were not normally distributed. When power trend lines were added to each frequency distribution, R2 values indicated that, to a very high degree, the variance in post frequencies can be explained by actor rank (AHC .962, DC .975, PC .969, SSC .95). Spearman correlations provided further indication of the strength and statistical significance of the relationship (AHC .987. DC .967, PC .983, SSC .993, P<.001). Conclusions: This is the first study to investigate power distributions across multiple DHSNs, each addressing a unique condition. Results indicate that despite vast differences in theme, content, and length of existence, DHSNs follow properties of power laws. The structure of DHSNs is important as it gives insight to researchers and managers into the nature and mechanisms of network functionality. The 5-step process undertaken to compare actor contribution patterns can be replicated in networks that are managed by other organizations, and we conjecture that patterns observed in this study could be found in other DHSNs. Future research should analyze network growth over time and examine the characteristics and survival rates of superusers. UR - http://www.jmir.org/2015/6/e160/ UR - http://dx.doi.org/10.2196/jmir.4297 UR - http://www.ncbi.nlm.nih.gov/pubmed/26111790 ID - info:doi/10.2196/jmir.4297 ER - TY - JOUR AU - Ali, Kathina AU - Farrer, Louise AU - Gulliver, Amelia AU - Griffiths, M. Kathleen PY - 2015/05/19 TI - Online Peer-to-Peer Support for Young People With Mental Health Problems: A Systematic Review JO - JMIR Mental Health SP - e19 VL - 2 IS - 2 KW - mental health KW - Internet KW - young people KW - peer-to-peer support KW - Internet support groups KW - technology KW - systematic reviews N2 - Background: Adolescence and early adulthood are critical periods for the development of mental disorders. Online peer-to-peer communication is popular among young people and may improve mental health by providing social support. Previous systematic reviews have targeted Internet support groups for adults with mental health problems, including depression. However, there have been no systematic reviews examining the effectiveness of online peer-to-peer support in improving the mental health of adolescents and young adults. Objective: The aim of this review was to systematically identify available evidence for the effectiveness of online peer-to peer support for young people with mental health problems. Methods: The PubMed, PsycInfo, and Cochrane databases were searched using keywords and Medical Subject Headings (MeSH) terms. Retrieved abstracts (n=3934) were double screened and coded. Studies were included if they (1) investigated an online peer-to-peer interaction, (2) the interaction discussed topics related to mental health, (3) the age range of the sample was between 12 to 25 years, and (4) the study evaluated the effectiveness of the peer-to-peer interaction. Results: Six studies satisfied the inclusion criteria for the current review. The studies targeted a range of mental health problems including depression and anxiety (n=2), general psychological problems (n=1), eating disorders (n=1), and substance use (tobacco) (n=2). The majority of studies investigated Internet support groups (n=4), and the remaining studies focused on virtual reality chat sessions (n=2). In almost all studies (n=5), the peer support intervention was moderated by health professionals, researchers or consumers. Studies employed a range of study designs including randomized controlled trials (n=3), pre-post studies (n=2) and one randomized trial. Overall, two of the randomized controlled trials were associated with a significant positive outcome in comparison to the control group at post-intervention. In the remaining four studies, peer-to-peer support was not found to be effective. Conclusions: This systematic review identified an overall lack of high-quality studies examining online peer-to-peer support for young people. Given that peer support is frequently used as an adjunct to Internet interventions for a variety of mental health conditions, there is an urgent need to determine the effectiveness of peer support alone as an active intervention. UR - http://mental.jmir.org/2015/2/e19/ UR - http://dx.doi.org/10.2196/mental.4418 UR - http://www.ncbi.nlm.nih.gov/pubmed/26543923 ID - info:doi/10.2196/mental.4418 ER - TY - JOUR AU - Jones, B. Ray AU - Ashurst, J. Emily AU - Atkey, Jo AU - Duffy, Barbara PY - 2015/05/18 TI - Older People Going Online: Its Value and Before-After Evaluation of Volunteer Support JO - J Med Internet Res SP - e122 VL - 17 IS - 5 KW - digital inclusion KW - health informatics KW - social return on investment KW - older people N2 - Background: Although Internet usage can benefit older people by reducing social isolation, increasing access to services, and improving health and well-being, only a minority are online. Barriers to Internet uptake include attitude and a lack of knowledge and help. We have evaluated volunteer support in helping older people go online. Knowing what value the Internet has been to older people who have just gone online should guide how it is ?sold? to those remaining offline. Objective: Objectives of this study are (1) to assess the feasibility of recruiting volunteers aged 50 years and older and supporting them in helping people (ie, beneficiaries) aged 65 years and older go online, (2) to assess the impact of beneficiaries using the Internet on contacts with others, loneliness, and mental health, and (3) to assess the perceived value to beneficiaries of going online. Methods: Beneficiaries received help in using the Internet from 32 volunteers in one of two ways: (1) one-on-one in their own homes, receiving an average of 12 hours of help over eight visits, or (2) in small group sessions, receiving 12 hours of help over six visits. We assessed, at registration and follow-up, the number of contacts with others, using Lubben?s 6-item Lubben Social Network Scale (LBNS-6), loneliness, using De Jong Gierveld?s 6-item De Jong Gierveld loneliness scale (DJG-6), and mental well-being, using Tennant?s Short Warwick-Edinburgh Mental Well-Being Scale (SWEMWBS). We also assessed how beneficiaries valued going online using a Social Return on Investment (SROI) approach by postal survey. Results: A total of 144 beneficiaries were recruited with the aim of helping them go online via one-on-one (n=58) or small group (n=86) sessions. Data through to follow-up were available on 76.4% (110/144) of participants. From baseline to follow-up, the number of contacts with others was significantly increased?LBNS-6, mean 13.7 to mean 17.6?loneliness scores were reduced?DJG-6, mean 2.38 to mean 1.80?and mental well-being improved?SWEMWBS, mean 24.06 to mean 24.96. Out of six options, beneficiaries valued better communication with family and friends most and better health care least as a benefit of using the Internet. Out of nine options, having the Internet was valued less than having TV, but more than, for example, having a weekly visit from a cleaner. There were no associations between values placed on Internet use or volunteer help and psychological improvements. Conclusions: Volunteer help to go online seemed to result in increased social contacts, reduced loneliness, and improved mental well-being and was valued quite highly by beneficiaries. Although the use of the Internet for health care was the least valued, improved social contact can improve health. Contacting family is likely to be the best ?selling point? of the Internet for older people. UR - http://www.jmir.org/2015/5/e122/ UR - http://dx.doi.org/10.2196/jmir.3943 UR - http://www.ncbi.nlm.nih.gov/pubmed/25986724 ID - info:doi/10.2196/jmir.3943 ER - TY - JOUR AU - Griffiths, Margaret Kathleen AU - Reynolds, Julia AU - Vassallo, Sara PY - 2015/04/24 TI - An Online, Moderated Peer-to-Peer Support Bulletin Board for Depression: User-Perceived Advantages and Disadvantages JO - JMIR Mental Health SP - e14 VL - 2 IS - 2 KW - Internet KW - support group KW - mental health KW - depression N2 - Background: Online, peer-to-peer support groups for depression are common on the World Wide Web and there is some evidence of their effectiveness. However, little is known about the mechanisms by which Internet support groups (ISGs) might work. Objective: This study aimed to investigate consumer perceptions of the benefits and disadvantages of online peer-to-peer support by undertaking a content analysis of the spontaneous posts on BlueBoard, a well-established, moderated, online depression bulletin board. Methods: The research set comprised all posts on the board (n=3645) for each of 3 months selected at 4 monthly intervals over 2011. The data were analyzed using content analysis and multiple coders. Results: A total of 586 relevant posts were identified, 453 (77.3%) reporting advantages and 133 (22.7%) reporting disadvantages. Positive personal change (335/453, 74.0%) and valued social interactions and support (296/453, 65.3%) emerged as perceived advantages. Other identified benefits were valued opportunities to disclose/express feelings or views (29/453, 6.4%) and advantages of the BlueBoard environment (45/453, 9.9%). Disadvantages were negative personal change (50/133, 37.6%), perceived disadvantages of board rules/moderation (42/133, 31.6%), unhelpful social interactions/contact with other members (40/133, 30.1%), and technical obstacles to using the board (14/133, 10.5%). Conclusions: Consumers value the opportunity to participate in an online mutual support group for mental health concerns. Further research is required to better understand how and if these perceived advantages translate into positive outcomes for consumers, and whether the perceived disadvantages of such boards can be addressed without compromising the safety and positive outcomes of the board. UR - http://mental.jmir.org/2015/2/e14/ UR - http://dx.doi.org/10.2196/mental.4266 UR - http://www.ncbi.nlm.nih.gov/pubmed/26543919 ID - info:doi/10.2196/mental.4266 ER - TY - JOUR AU - Wang, Yi-Chia AU - Kraut, E. Robert AU - Levine, M. John PY - 2015/04/20 TI - Eliciting and Receiving Online Support: Using Computer-Aided Content Analysis to Examine the Dynamics of Online Social Support JO - J Med Internet Res SP - e99 VL - 17 IS - 4 KW - social support KW - health communication KW - self-disclosure KW - social media KW - support groups KW - emotions KW - natural language processing N2 - Background: Although many people with serious diseases participate in online support communities, little research has investigated how participants elicit and provide social support on these sites. Objective: The first goal was to propose and test a model of the dynamic process through which participants in online support communities elicit and provide emotional and informational support. The second was to demonstrate the value of computer coding of conversational data using machine learning techniques (1) by replicating results derived from human-coded data about how people elicit support and (2) by answering questions that are intractable with small samples of human-coded data, namely how exposure to different types of social support predicts continued participation in online support communities. The third was to provide a detailed description of these machine learning techniques to enable other researchers to perform large-scale data analysis in these communities. Methods: Communication among approximately 90,000 registered users of an online cancer support community was analyzed. The corpus comprised 1,562,459 messages organized into 68,158 discussion threads. Amazon Mechanical Turk workers coded (1) 1000 thread-starting messages on 5 attributes (positive and negative emotional self-disclosure, positive and negative informational self-disclosure, questions) and (2) 1000 replies on emotional and informational support. Their judgments were used to train machine learning models that automatically estimated the amount of these 7 attributes in the messages. Across attributes, the average Pearson correlation between human-based judgments and computer-based judgments was .65. Results: Part 1 used human-coded data to investigate relationships between (1) 4 kinds of self-disclosure and question asking in thread-starting posts and (2) the amount of emotional and informational support in the first reply. Self-disclosure about negative emotions (beta=.24, P<.001), negative events (beta=.25, P<.001), and positive events (beta=.10, P=.02) increased emotional support. However, asking questions depressed emotional support (beta=?.21, P<.001). In contrast, asking questions increased informational support (beta=.38, P<.001), whereas positive informational self-disclosure depressed it (beta=?.09, P=.003). Self-disclosure led to the perception of emotional needs, which elicited emotional support, whereas asking questions led to the perception of informational needs, which elicited informational support. Part 2 used machine-coded data to replicate these results. Part 3 analyzed the machine-coded data and showed that exposure to more emotional support predicted staying in the group longer 33% (hazard ratio=0.67, P<.001), whereas exposure to more informational support predicted leaving the group sooner (hazard ratio=1.05, P<.001). Conclusions: Self-disclosure is effective in eliciting emotional support, whereas question asking is effective in eliciting informational support. Moreover, perceptions that people desire particular kinds of support influence the support they receive. Finally, the type of support people receive affects the likelihood of their staying in or leaving the group. These results demonstrate the utility of machine learning methods for investigating the dynamics of social support exchange in online support communities. UR - http://www.jmir.org/2015/4/e99/ UR - http://dx.doi.org/10.2196/jmir.3558 UR - http://www.ncbi.nlm.nih.gov/pubmed/25896033 ID - info:doi/10.2196/jmir.3558 ER - TY - JOUR AU - Jung, Yuchul AU - Hur, Cinyoung AU - Jung, Dain AU - Kim, Minki PY - 2015/04/07 TI - Identifying Key Hospital Service Quality Factors in Online Health Communities JO - J Med Internet Res SP - e90 VL - 17 IS - 4 KW - hospital service factors KW - online health communities KW - social media-based key quality factors for hospitals KW - recommendation type classification KW - quality factor analysis KW - healthcare policy N2 - Background: The volume of health-related user-created content, especially hospital-related questions and answers in online health communities, has rapidly increased. Patients and caregivers participate in online community activities to share their experiences, exchange information, and ask about recommended or discredited hospitals. However, there is little research on how to identify hospital service quality automatically from the online communities. In the past, in-depth analysis of hospitals has used random sampling surveys. However, such surveys are becoming impractical owing to the rapidly increasing volume of online data and the diverse analysis requirements of related stakeholders. Objective: As a solution for utilizing large-scale health-related information, we propose a novel approach to identify hospital service quality factors and overtime trends automatically from online health communities, especially hospital-related questions and answers. Methods: We defined social media?based key quality factors for hospitals. In addition, we developed text mining techniques to detect such factors that frequently occur in online health communities. After detecting these factors that represent qualitative aspects of hospitals, we applied a sentiment analysis to recognize the types of recommendations in messages posted within online health communities. Korea?s two biggest online portals were used to test the effectiveness of detection of social media?based key quality factors for hospitals. Results: To evaluate the proposed text mining techniques, we performed manual evaluations on the extraction and classification results, such as hospital name, service quality factors, and recommendation types using a random sample of messages (ie, 5.44% (9450/173,748) of the total messages). Service quality factor detection and hospital name extraction achieved average F1 scores of 91% and 78%, respectively. In terms of recommendation classification, performance (ie, precision) is 78% on average. Extraction and classification performance still has room for improvement, but the extraction results are applicable to more detailed analysis. Further analysis of the extracted information reveals that there are differences in the details of social media?based key quality factors for hospitals according to the regions in Korea, and the patterns of change seem to accurately reflect social events (eg, influenza epidemics). Conclusions: These findings could be used to provide timely information to caregivers, hospital officials, and medical officials for health care policies. UR - http://www.jmir.org/2015/4/e90/ UR - http://dx.doi.org/10.2196/jmir.3646 UR - http://www.ncbi.nlm.nih.gov/pubmed/25855612 ID - info:doi/10.2196/jmir.3646 ER - TY - JOUR AU - Kauw, Dirkjan AU - Repping-Wuts, Han AU - Noordzij, Alida AU - Stikkelbroeck, Nike AU - Hermus, Ad AU - Faber, Marjan PY - 2015/02/25 TI - The Contribution of Online Peer-to-Peer Communication Among Patients With Adrenal Disease to Patient-Centered Care JO - J Med Internet Res SP - e54 VL - 17 IS - 3 KW - online forum KW - self care KW - Cushing?s syndrome KW - Addison?s disease N2 - Background: Addison?s disease and Cushing?s syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care. Objective: Our aim was to analyze the purposes of online patient-to-patient forum conversations, within the context of patient-centered care. Methods: For this study a consecutive sample of 300 questions (?threads?) from the past 3.5 years was selected from the forum. The content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the Picker Institute. This analysis was performed using ATLAS.ti. Results: From the 390 questions analyzed, 80.8% (N=315) were intended to gain more information about the disease, the treatment, and to verify if other patients had similar complaints. To a much lesser extent (38/390, 9.7%), questions expressed a call for emotional support. Patients answered primarily by giving practical tips to fellow patients and to share their own experiences. Conclusions: On an online patient forum for Cushing?s syndrome and Addison?s disease, patients appear to primarily gain knowledge and, to a lesser extent, emotional support from their peers. This experience-based knowledge has become a very important information source. As such, patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals. UR - http://www.jmir.org/2015/3/e54/ UR - http://dx.doi.org/10.2196/jmir.3869 UR - http://www.ncbi.nlm.nih.gov/pubmed/25720377 ID - info:doi/10.2196/jmir.3869 ER - TY - JOUR AU - Allam, Ahmed AU - Kostova, Zlatina AU - Nakamoto, Kent AU - Schulz, Johannes Peter PY - 2015/01/09 TI - The Effect of Social Support Features and Gamification on a Web-Based Intervention for Rheumatoid Arthritis Patients: Randomized Controlled Trial JO - J Med Internet Res SP - e14 VL - 17 IS - 1 KW - social support KW - gaming KW - experimental games KW - eHealth KW - rheumatoid arthritis KW - randomized controlled trial KW - multilevel analysis KW - patient empowerment KW - physical activity KW - health care utilization N2 - Background: Rheumatoid arthritis (RA) is chronic systematic disease that affects people during the most productive period of their lives. Web-based health interventions have been effective in many studies; however, there is little evidence and few studies showing the effectiveness of online social support and especially gamification on patients? behavioral and health outcomes. Objective: The aim of this study was to look into the effects of a Web-based intervention that included online social support features and gamification on physical activity, health care utilization, medication overuse, empowerment, and RA knowledge of RA patients. The effect of gamification on website use was also investigated. Methods: We conducted a 5-arm parallel randomized controlled trial for RA patients in Ticino (Italian-speaking part of Switzerland). A total of 157 patients were recruited through brochures left with physicians and were randomly allocated to 1 of 4 experimental conditions with different types of access to online social support and gamification features and a control group that had no access to the website. Data were collected at 3 time points through questionnaires at baseline, posttest 2 months later, and at follow-up after another 2 months. Primary outcomes were physical activity, health care utilization, and medication overuse; secondary outcomes included empowerment and RA knowledge. All outcomes were self-reported. Intention-to-treat analysis was followed and multilevel linear mixed models were used to study the change of outcomes over time. Results: The best-fit multilevel models (growth curve models) that described the change in the primary outcomes over the course of the intervention included time and empowerment as time-variant predictors. The growth curve analyses of experimental conditions were compared to the control group. Physical activity increased over time for patients having access to social support sections plus gaming (unstandardized beta coefficient [B]=3.39, P=.02). Health care utilization showed a significant decrease for patients accessing social support features (B=?0.41, P=.01) and patients accessing both social support features and gaming (B=?0.33, P=.03). Patients who had access to either social support sections or the gaming experience of the website gained more empowerment (B=2.59, P=.03; B=2.29, P=.05; respectively). Patients who were offered a gamified experience used the website more often than the ones without gaming (t91=?2.41, P=.02; U=812, P=.02). Conclusions: The Web-based intervention had a positive impact (more desirable outcomes) on intervention groups compared to the control group. Social support sections on the website decreased health care utilization and medication overuse and increased empowerment. Gamification alone or with social support increased physical activity and empowerment and decreased health care utilization. This study provides evidence demonstrating the potential positive effect of gamification and online social support on health and behavioral outcomes. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN): 57366516; http://www.controlled-trials.com/ISRCTN57366516 (Archived by webcite at http://www.webcitation.org/6PBvvAvvV). UR - http://www.jmir.org/2015/1/e14/ UR - http://dx.doi.org/10.2196/jmir.3510 UR - http://www.ncbi.nlm.nih.gov/pubmed/25574939 ID - info:doi/10.2196/jmir.3510 ER - TY - JOUR AU - Makai, Peter AU - Perry, Marieke AU - Robben, HM Sarah AU - Schers, Henk AU - Heinen, Maud AU - Olde Rikkert, GM Marcel AU - Melis, JF René PY - 2014/12/17 TI - Which Frail Older Patients Use Online Health Communities and Why? A Mixed Methods Process Evaluation of Use of the Health and Welfare Portal JO - J Med Internet Res SP - e278 VL - 16 IS - 12 KW - eHealth KW - frail older people KW - care-coordination KW - chronic care N2 - Background: Frail older people often receive fragmented care from multiple providers. According to the literature, there is an urgent need for coordination of care. Online and eHealth tools are increasingly used to improve coordination. However, there are significant barriers to their implementation in frail older people. Objective: Our aim was to (1) evaluate differences in use of a personal online health community (POHC) for frail older people in relation to personal characteristics, and (2) explore barriers and facilitators for use as experienced by older people and their informal caregivers, using the case of the Health and Welfare Information Portal (ZWIP). Methods: This is a mixed methods study. For the quantitative analysis, we used POHC usage information (2 years follow-up) and baseline characteristics of frail older people. For the qualitative analysis, we used semistructured interviews with older people and their informal caregivers. Participants were recruited from 11 family practices in the east of the Netherlands and frail older people over 70 years. The ZWIP intervention is a personal online health community for frail older people, their informal caregivers, and their providers. ZWIP was developed at the Geriatrics Department of Radboud University Medical Center. We collected data on POHC use for 2 years as well as relevant patient characteristics. Interview topics were description of use, reasons for use and non-use, and user profiles. Results: Of 622 frail patients in the intervention group, 290 were connected to ZWIP; 79 used ZWIP regularly (at least monthly). Main predictors for use were having an informal caregiver, having problems with activities of daily living, and having a large number of providers. Family practice level predictors were being located in a village, and whether the family practitioners had previously used electronic consultation and cared for a large percentage of frail older people. From 23 interviews, main reasons for use were perceiving ZWIP to be a good, quick, and easy way of communicating with providers and the presence of active health problems. Important reasons for non-use were lack of computer skills and preferring traditional means of consultation. Conclusions: Only 27.2% (79/290) of frail older enrolled in the POHC intervention used the POHC frequently. For implementation of personal online health communities, older people with active health problems and a sizable number of health care providers should be targeted, and the informal caregiver, if present, should be involved in the implementation process. Trial Registration: International Standard Randomized Controlled Trial Number (ISRCTN): 11165483; http://www.controlled-trials.com/isrctn/pf/11165483 (Archived by WebCite at http://www.webcitation.org/6U3fZovoU). UR - http://www.jmir.org/2014/12/e278/ UR - http://dx.doi.org/10.2196/jmir.3609 UR - http://www.ncbi.nlm.nih.gov/pubmed/25519769 ID - info:doi/10.2196/jmir.3609 ER - TY - JOUR AU - Hekler, B. Eric AU - Dubey, Gaurav AU - McDonald, W. David AU - Poole, S. Erika AU - Li, Victor AU - Eikey, Elizabeth PY - 2014/12/08 TI - Exploring the Relationship Between Changes in Weight and Utterances in an Online Weight Loss Forum: A Content and Correlational Analysis Study JO - J Med Internet Res SP - e254 VL - 16 IS - 12 KW - social media KW - social support KW - weight loss KW - Natural Language Processing N2 - Background: There is increasing interest in the use of online forums as a component of eHealth weight loss interventions. Although the research is mixed on the utility of online forums in general, results suggest that there is promise to this, particularly if the systems can be designed well to support healthful interactions that foster weight loss and continued engagement. Objective: The purpose of this study was to examine the relationship between the styles of utterances individuals make on an online weight loss forum and week-to-week fluctuations in weight. This analysis was conducted to generate hypotheses on possible strategies that could be used to improve the overall design of online support groups to facilitate more healthful interactions. Methods: A convenience sample of individuals using an online weight loss forum (N=4132) included data both on online forum use and weight check-in data. All interactions were coded utilizing the Linguistic Inquiry and Word Count (LIWC) system. Mixed model analyses were conducted to examine the relationship between these LIWC variables and weight over time. Results: Results suggested that increased use of past-tense verbs (P=.05) and motion (P=.02) were associated with lower weekly weights whereas increased use of conjunctions (eg, and, but, whereas; P=.001) and exclusion words (eg, but, without, exclude; P=.07) were both associated with higher weight during the weeks when these utterances were used more. Conclusions: These results provide some insights on the styles of interactions that appear to be associated with weight fluctuations. Future work should explore the stability of these findings and also explore possibilities for fostering these types of interactions more explicitly within online weight loss forums. UR - http://www.jmir.org/2014/12/e254/ UR - http://dx.doi.org/10.2196/jmir.3735 UR - http://www.ncbi.nlm.nih.gov/pubmed/25513997 ID - info:doi/10.2196/jmir.3735 ER - TY - JOUR AU - Kimmerle, Joachim AU - Bientzle, Martina AU - Cress, Ulrike PY - 2014/12/04 TI - Personal Experiences and Emotionality in Health-Related Knowledge Exchange in Internet Forums: A Randomized Controlled Field Experiment Comparing Responses to Facts Vs Personal Experiences JO - J Med Internet Res SP - e277 VL - 16 IS - 12 KW - personal experiences KW - emotionality KW - health KW - knowledge exchange KW - field experiment KW - Internet forums N2 - Background: On the Internet, people share personal experiences as well as facts and objective information. This also holds true for the exchange of health-related information in a variety of Internet forums. In online discussions about health topics, both fact-oriented and strongly personal contributions occur on a regular basis. Objective: In this field experiment, we examined in what way the particular type of contribution (ie, factual information vs personal experiences) has an impact on the subsequent communication in health-related Internet forums. Methods: For this purpose, we posted parallelized queries to 28 comparable Internet forums; queries were identical with regard to the information contained but included either fact-oriented descriptions or personal experiences related to measles vaccination. In the factual information condition, we posted queries to the forums that contained the neutral summary of a scientific article. In the personal experiences condition, we posted queries to the forums that contained the same information as in the first condition, but were framed as personal experiences Results: We found no evidence that personal experiences evoked more responses (mean 3.79, SD 3.91) from other members of the Internet forums than fact-oriented contributions (mean 2.14, SD 2.93, t26=0.126, P=.219). But personal experiences elicited emotional replies (mean 3.17, SD 1.29) from other users to a greater extent than fact-oriented contributions (mean 2.13, SD 1.29, t81=3.659, P<.001). Conclusions: We suggest that personal experiences elicited more emotional replies due to the process of emotional anchoring of people?s own style of communication. We recommend future studies should aim at testing the hypotheses with more general and with less emotionally charged topics, constructing different fact-oriented posts, and examining additional potential factors of influence such as personality factors or particular communication situations. UR - http://www.jmir.org/2014/12/e277/ UR - http://dx.doi.org/10.2196/jmir.3766 UR - http://www.ncbi.nlm.nih.gov/pubmed/25486677 ID - info:doi/10.2196/jmir.3766 ER - TY - JOUR AU - Batenburg, Anika AU - Das, Enny PY - 2014/11/28 TI - Emotional Approach Coping and the Effects of Online Peer-Led Support Group Participation Among Patients With Breast Cancer: A Longitudinal Study JO - J Med Internet Res SP - e256 VL - 16 IS - 11 KW - Internet KW - breast neoplasms KW - self-help groups KW - social support KW - online systems KW - emotions N2 - Background: Previous research on the effects of online peer support on psychological well-being of patients with cancer showed mixed findings. There is a need for longitudinal studies explaining if and when online peer-led support groups are beneficial. How patients cope with emotions that come along with the cancer diagnosis might influence effectiveness of online participation. Emotional approach coping is a construct encompassing the intentional use of emotional processing and emotional expression in efforts to manage adverse circumstances. Objective: In this longitudinal study, we hypothesize that mixed findings in previous research are partly caused by individual differences in coping with emotions, which may moderate the effects of online support group participation on patients? well-being. Methods: A total of 133 Dutch patients with breast cancer filled out a baseline (T0) and a follow-up (T1, 6 months later) questionnaire assessing intensity of online participation within the online support community, emotional approach coping (ie, actively processing and expressing emotions), and psychological well-being (depression, emotional well-being, and breast cancer?related concerns). There were 109 patients who visited an online support community at both points in time. Repeated measures ANOVAs assessed change in well-being over time. Results: Results showed 3-way interactions of time, online intensity of participation, and emotional approach coping on emotional well-being (F1,89=4.232, P=.04, ?2?=.045) and depression (F1,88=8.167, P=.005, ?2?=.085). Online support group participation increased emotional well-being over time for patients who scored low on emotional approach coping at T0, provided that they were highly active online. Patients who were highly active online with a high score on emotional approach coping reported no change in sense of well-being, but showed the highest score on well-being overall. Participating less frequently online was only beneficial for patients who scored high on emotional approach coping, showing an increase in well-being over time. Patients participating less frequently and with a low score on emotional approach coping reported no significant change in well-being over time. Conclusions: This study extends previous findings on the effects of online peer support in two ways: by testing changes in well-being as a function of intensity of online support group participation and by examining the role of individual differences in emotional coping styles. Findings showed no negative effects of intense support group participation. Participating frequently online was especially helpful for patients who approach their emotions less actively; their emotional well-being increased over time. In contrast, frequent online users who actively approach their emotions experienced no change in well-being, reporting highest levels of well-being overall. For patients who participate less intensively within the support community, coping style seems to outweigh effects of online participation; over time, patients who actively approached emotions experienced an increase in psychological well-being, whereas patients with a low score on emotional approach coping reported no change in depression and emotional well-being. UR - http://www.jmir.org/2014/11/e256/ UR - http://dx.doi.org/10.2196/jmir.3517 UR - http://www.ncbi.nlm.nih.gov/pubmed/25474819 ID - info:doi/10.2196/jmir.3517 ER - TY - JOUR AU - Boogaarts, Hieronymus AU - van Nuenen-Platvoet, Willemijn AU - van den Abbeele, Leonie AU - Petersen, Harriette AU - Draskovic, Irena AU - de Vries, Joost AU - Westert, Gert AU - Grotenhuis, Andre J. AU - Bartels, Ronald PY - 2014/11/13 TI - An Online Health Community for Aneurysmal Subarachnoid Hemorrhage Patients: A Pilot Study JO - JMIR Res Protoc SP - e60 VL - 3 IS - 4 KW - subarachnoid hemorrhage KW - online community KW - quality of care N2 - Background: Aneurysmal subarachnoid hemorrhage (aSAH) is a condition affecting relatively young patients and has high rates of morbidity and mortality. Online health communities have emerged to fill the void for patient advocacy and information, allowing individuals with shared experiences and chronic disorders to connect. Objective: We have developed an online health community for aSAH patients, and this pilot study was conducted to evaluate it from a patient?s perspective. Methods: We implemented an online, members-only, health community (MijnSAB, translation: MySAH) in addition to the usual aSAH care at Radboudumc, Nijmegen, the Netherlands. A questionnaire that was sent to consecutive aSAH patients was used to evaluate the usability and utility of MySAH. Answers were provided using a 5-point Likert scale. There was also one open-ended question asking about what was missing from the MySAH tool. Results: In total, 66 consecutive patients with aneurysmal subarachnoid hemorrhage were informed about the online health community. Of 64 potential MySAH users, 26 patients gained access to MySAH, 20 of whom were willing to participate in the evaluation. Those who used the community were younger (P=.03) and in a better condition at discharge (P=.03). The patients were positive about MySAH?s contribution to the quality of their care, but not to their quality of life. Most patients (18/20, 90%) reported that they would recommend the community to others in their position. Open suggestions on how to improve the tool included more frequent blogs, including by a rehabilitation specialist. Conclusions: This pilot study showed that the online health community, MySAH, has a beneficial effect on the aftercare of patients suffering from aSAH because it gives easy access to relevant information provided by peers or caregivers. Due to the variable clinical outcomes after aSAH, the tool will mainly be useful for a select group of patients (with a better clinical outcome). UR - http://www.researchprotocols.org/2014/4/e60/ UR - http://dx.doi.org/10.2196/resprot.3736 UR - http://www.ncbi.nlm.nih.gov/pubmed/25405364 ID - info:doi/10.2196/resprot.3736 ER - TY - JOUR AU - Schweier, Rebecca AU - Romppel, Matthias AU - Richter, Cynthia AU - Hoberg, Eike AU - Hahmann, Harry AU - Scherwinski, Inge AU - Kosmützky, Gregor AU - Grande, Gesine PY - 2014/07/23 TI - A Web-Based Peer-Modeling Intervention Aimed at Lifestyle Changes in Patients With Coronary Heart Disease and Chronic Back Pain: Sequential Controlled Trial JO - J Med Internet Res SP - e177 VL - 16 IS - 7 KW - coronary artery disease KW - lifestyle KW - health behavior KW - back pain KW - personal narratives as topic KW - Internet KW - diet KW - exercise KW - Web-based intervention N2 - Background: Traditional secondary prevention programs often fail to produce sustainable behavioral changes in everyday life. Peer-modeling interventions and integration of peer experiences in health education are a promising way to improve long-term effects in behavior modification. However, effects of peer support modeling on behavioral change have not been evaluated yet. Therefore, we implemented and evaluated a website featuring patient narratives about successful lifestyle changes. Objective: Our aim is to examine the effects of using Web-based patient narratives about successful lifestyle change on improvements in physical activity and eating behavior for patients with coronary heart disease and chronic back pain 3 months after participation in a rehabilitation program. Methods: The lebensstil-aendern (?lifestyle-change?) website is a nonrestricted, no-cost, German language website that provides more than 1000 video, audio, and text clips from interviews with people with coronary heart disease and chronic back pain. To test efficacy, we conducted a sequential controlled trial and recruited patients with coronary heart disease and chronic back pain from 7 inpatient rehabilitation centers in Germany. The intervention group attended a presentation on the website; the control group did not. Physical activity and eating behavior were assessed by questionnaire during the rehabilitation program and 12 weeks later. Analyses were conducted based on an intention-to-treat and an as-treated protocol. Results: A total of 699 patients were enrolled and 571 cases were included in the analyses (control: n=313, intervention: n=258; female: 51.1%, 292/571; age: mean 53.2, SD 8.6 years; chronic back pain: 62.5%, 357/571). Website usage in the intervention group was 46.1% (119/258). In total, 141 trial participants used the website. Independent t tests based on the intention-to-treat protocol only demonstrated nonsignificant trends in behavioral change related to physical activity and eating behavior. Multivariate regression analyses confirmed belonging to the intervention group was an independent predictor of self-reported improvements in physical activity regularity (?=.09, P=.03) and using less fat for cooking (?=.09, P=.04). In independent t tests based on the as-treated protocol, website use was associated with higher self-reported improvements in integrating physical activity into daily routine (d=0.22, P=.02), in physical activity regularity (d=0.23, P=.02), and in using less fat for cooking (d=0.21, P=.03). Multivariate regression analyses revealed that using the website at least 3 times was the only factor associated with improved lifestyle behaviors. Conclusions: Usage of the lebensstil-aendern website corresponds to more positive lifestyle changes. However, as-treated analyses do not allow for differentiating between causal effects and selection bias. Despite these limitations, the trial indicates that more than occasional website usage is necessary to reach dose-response efficacy. Therefore, future studies should concentrate on strategies to improve adherence to Web-based interventions and to encourage more frequent usage of these programs. UR - http://www.jmir.org/2014/7/e177/ UR - http://dx.doi.org/10.2196/jmir.3434 UR - http://www.ncbi.nlm.nih.gov/pubmed/25057119 ID - info:doi/10.2196/jmir.3434 ER - TY - JOUR AU - Tsuya, Atsushi AU - Sugawara, Yuya AU - Tanaka, Atsushi AU - Narimatsu, Hiroto PY - 2014/05/27 TI - Do Cancer Patients Tweet? Examining the Twitter Use of Cancer Patients in Japan JO - J Med Internet Res SP - e137 VL - 16 IS - 5 KW - communication KW - co-occurrence KW - Internet KW - leukemia KW - Web 2.0 N2 - Background: Twitter is an interactive, real-time media that could prove useful in health care. Tweets from cancer patients could offer insight into the needs of cancer patients. Objective: The objective of this study was to understand cancer patients? social media usage and gain insight into patient needs. Methods: A search was conducted of every publicly available user profile on Twitter in Japan for references to the following: breast cancer, leukemia, colon cancer, rectal cancer, colorectal cancer, uterine cancer, cervical cancer, stomach cancer, lung cancer, and ovarian cancer. We then used an application programming interface and a data mining method to conduct a detailed analysis of the tweets from cancer patients. Results: Twitter user profiles included references to breast cancer (n=313), leukemia (n=158), uterine or cervical cancer (n=134), lung cancer (n=87), colon cancer (n=64), and stomach cancer (n=44). A co-occurrence network is seen for all of these cancers, and each cancer has a unique network conformation. Keywords included words about diagnosis, symptoms, and treatments for almost all cancers. Words related to social activities were extracted for breast cancer. Words related to vaccination and support from public insurance were extracted for uterine or cervical cancer. Conclusions: This study demonstrates that cancer patients share information about their underlying disease, including diagnosis, symptoms, and treatments, via Twitter. This information could prove useful to health care providers. UR - http://www.jmir.org/2014/5/e137/ UR - http://dx.doi.org/10.2196/jmir.3298 UR - http://www.ncbi.nlm.nih.gov/pubmed/24867458 ID - info:doi/10.2196/jmir.3298 ER - TY - JOUR AU - Frost, Jeana AU - Vermeulen, E. Ivar AU - Beekers, Nienke PY - 2014/05/14 TI - Anonymity Versus Privacy: Selective Information Sharing in Online Cancer Communities JO - J Med Internet Res SP - e126 VL - 16 IS - 5 KW - online systems KW - cancer KW - privacy KW - confidentiality KW - Health 2.0 KW - anonymity N2 - Background: Active sharing in online cancer communities benefits patients. However, many patients refrain from sharing health information online due to privacy concerns. Existing research on privacy emphasizes data security and confidentiality, largely focusing on electronic medical records. Patient preferences around information sharing in online communities remain poorly understood. Consistent with the privacy calculus perspective adopted from e-commerce research, we suggest that patients approach online information sharing instrumentally, weighing privacy costs against participation benefits when deciding whether to share certain information. Consequently, we argue that patients prefer sharing clinical information over daily life and identity information that potentially compromises anonymity. Furthermore, we explore whether patients? prior experiences, age, health, and gender affect perceived privacy costs and thus willingness to share information. Objective: The goal of the present study is to document patient preferences for sharing information within online health platforms. Methods: A total of 115 cancer patients reported sharing intentions for 15 different types of information, demographics, health status, prior privacy experiences, expected community utility, and privacy concerns. Results: Factor analysis on the 15 information types revealed 3 factors coinciding with 3 proposed information categories: clinical, daily life, and identity information. A within-subject ANOVA showed a strong preference for sharing clinical information compared to daily life and identity information (F1,114=135.59, P=.001, ?2=.93). Also, adverse online privacy experiences, age, and health status negatively affected information-sharing intentions. Female patients shared information less willingly. Conclusions: Respondents? information-sharing intentions depend on dispositional and situational factors. Patients share medical details more willingly than daily life or identity information. The results suggest the need to focus on anonymity rather than privacy in online communities. UR - http://www.jmir.org/2014/5/e126/ UR - http://dx.doi.org/10.2196/jmir.2684 UR - http://www.ncbi.nlm.nih.gov/pubmed/24828114 ID - info:doi/10.2196/jmir.2684 ER - TY - JOUR AU - Barnett, Stephen AU - Jones, C. Sandra AU - Caton, Tim AU - Iverson, Don AU - Bennett, Sue AU - Robinson, Laura PY - 2014/03/12 TI - Implementing a Virtual Community of Practice for Family Physician Training: A Mixed-Methods Case Study JO - J Med Internet Res SP - e83 VL - 16 IS - 3 KW - community of practice KW - virtual community of practice KW - general practice KW - family physician KW - training KW - medical graduate KW - education KW - social media N2 - Background: GP training in Australia can be professionally isolating, with trainees spread across large geographic areas, leading to problems with rural workforce retention. Virtual communities of practice (VCoPs) may provide a way of improving knowledge sharing and thus reducing professional isolation. Objective: The goal of our study was to review the usefulness of a 7-step framework for implementing a VCoP for general practitioner (GP) training and then evaluated the usefulness of the resulting VCoP in facilitating knowledge sharing and reducing professional isolation. Methods: The case was set in an Australian general practice training region involving 55 first-term trainees (GPT1s), from January to July 2012. ConnectGPR was a secure, online community site that included standard community options such as discussion forums, blogs, newsletter broadcasts, webchats, and photo sharing. A mixed-methods case study methodology was used. Results are presented and interpreted for each step of the VCoP 7-step framework and then in terms of the outcomes of knowledge sharing and overcoming isolation. Results: Step 1, Facilitation: Regular, personal facilitation by a group of GP trainers with a co-ordinating facilitator was an important factor in the success of ConnectGPR. Step 2, Champion and Support: Leadership and stakeholder engagement were vital. Further benefits are possible if the site is recognized as contributing to training time. Step 3, Clear Goals: Clear goals of facilitating knowledge sharing and improving connectedness helped to keep the site discussions focused. Step 4, A Broad Church: The ConnectGPR community was too narrow, focusing only on first-term trainees (GPT1s). Ideally there should be more involvement of senior trainees, trainers, and specialists. Step 5, A Supportive Environment: Facilitators maintained community standards and encouraged participation. Step 6, Measurement Benchmarking and Feedback: Site activity was primarily driven by centrally generated newsletter feedback. Viewing comments by other participants helped users benchmark their own knowledge, particularly around applying guidelines. Step 7, Technology and Community: All the community tools were useful, but chat was limited and users suggested webinars in future. A larger user base and more training may also be helpful. Time is a common barrier. Trust can be built online, which may have benefit for trainees that cannot attend face-to-face workshops. Knowledge sharing and isolation outcomes: 28/34 (82%) of the eligible GPT1s enrolled on ConnectGPR. Trainees shared knowledge through online chat, forums, and shared photos. In terms of knowledge needs, GPT1s rated their need for cardiovascular knowledge more highly than supervisors. Isolation was a common theme among interview respondents, and ConnectGPR users felt more supported in their general practice (13/14, 92.9%). Conclusions: The 7-step framework for implementation of an online community was useful. Overcoming isolation and improving connectedness through an online knowledge sharing community shows promise in GP training. Time and technology are barriers that may be overcome by training, technology, and valuable content. In a VCoP, trust can be built online. This has implications for course delivery, particularly in regional areas. VCoPs may also have a specific role assisting overseas trained doctors to interpret their medical knowledge in a new context. UR - http://www.jmir.org/2014/3/e83/ UR - http://dx.doi.org/10.2196/jmir.3083 UR - http://www.ncbi.nlm.nih.gov/pubmed/24622292 ID - info:doi/10.2196/jmir.3083 ER - TY - JOUR AU - McKechnie, Vicky AU - Barker, Chris AU - Stott, Josh PY - 2014/02/28 TI - The Effectiveness of an Internet Support Forum for Carers of People With Dementia: A Pre-Post Cohort Study JO - J Med Internet Res SP - e68 VL - 16 IS - 2 KW - Alzheimer disease KW - dementia KW - caregivers KW - self-help groups KW - Internet N2 - Background: The well-being of informal carers of people with dementia is an important public health issue. Caring for an elderly relative with dementia may be burdensome and stressful, and can negatively affect the carer?s social, family, and professional life. The combination of loss, the physical demands of caregiving, prolonged distress, and biological vulnerabilities of older carers may compromise their physical health, increase social isolation, and increase the risk of anxiety and depressive disorders. Caregiver stress is also linked to negative outcomes for the recipient of care and costs to society, including increased nursing home and hospital admissions. Consequently, carer support interventions are an important component of dementia care. Computer-mediated carer support offers a range of potential advantages compared to traditional face-to-face support groups, including accessibility and the possibility of tailoring to meet individual needs, but there has been little research on its effectiveness so far. Objective: This mixed-methods study examined the impact of a well-respected UK-based online support forum for carers of people with dementia. Methods: A total of 61 new forum users completed measures of anxiety (7-item Generalized Anxiety Disorder scale, GAD-7), depression (9-item Patient Health Questionnaire, PHQ-9), and quality of relationship with the person with dementia (Scale for the Quality of the Current Relationship in Caregiving, SQCRC), at baseline and again after 12 weeks of forum usage, within a pre-post design. In addition, 8 participants were interviewed about their experiences with using the forum. Results: There was an improvement in the quality of the relationship with the person with dementia (SQCRC: P=.003). There was no change in users? depression (PHQ-9) or anxiety (GAD-7) over the 12-week study period. Interview participants reported a range of positive experiences and benefits from using the forum. Limited negative experiences were also reported. Conclusions: Many of the reported experiences and benefits are unique to online peer support. Further research into online peer support for carers of people with dementia is needed to clarify who benefits under what conditions. UR - http://www.jmir.org/2014/2/e68/ UR - http://dx.doi.org/10.2196/jmir.3166 UR - http://www.ncbi.nlm.nih.gov/pubmed/24583789 ID - info:doi/10.2196/jmir.3166 ER - TY - JOUR AU - Das, Anita AU - Faxvaag, Arild PY - 2014/02/06 TI - What Influences Patient Participation in an Online Forum for Weight Loss Surgery? A Qualitative Case Study JO - Interact J Med Res SP - e4 VL - 3 IS - 1 KW - obesity KW - eHealth KW - bariatric surgery KW - online forum KW - communication KW - social support N2 - Background: Many patients who undergo weight loss (bariatric) surgery seek information and social support in online discussion forums, but the vast amount of available information raises concerns about the impact of such information. A secure online discussion forum was developed and offered to bariatric surgery patients. The forum was moderated and allowed contact with peers and health care professionals. Objective: The purposes of this study were to explore how individuals undergoing bariatric surgery used the moderated discussion forum and to better understand what influenced their participation in the forum. Methods: The study was designed as an explorative case study. We conducted participant observation of the discussion forum over a time period of approximately six months. For further insight, we carried out in-depth semistructured interviews with seven patients who had access to the forum. We analyzed the material inductively, using content and thematic analysis. Results: The patients used the forum as an arena in which to interact with peers and providers, as well as to provide and achieve informational and social support. The analysis suggests that there are three major themes that influenced participation in the online discussion forum: (1) the participant?s motivation to seek information, advice, and guidance, (2) the need for social support and networking among peers, and (3) concerns regarding self-disclosure. Conclusions: The findings of this study imply that a moderated discussion forum for bariatric surgery patients has potential for use in a therapeutic context. The discussion forum fulfilled the informational and support needs of the bariatric surgery patients and was particularly useful for those who excluded themselves from the traditional program and experienced barriers to expressing their own needs. Even though our findings imply that the patients benefitted from using the forum regardless of their active or passive participation, restraining factors, such as considerations regarding self-disclosure, must be further investigated to prevent certain users from being precluded from participation. UR - http://www.i-jmr.org/2014/1/e4/ UR - http://dx.doi.org/10.2196/ijmr.2847 UR - http://www.ncbi.nlm.nih.gov/pubmed/24509408 ID - info:doi/10.2196/ijmr.2847 ER - TY - JOUR AU - Batenburg, Anika AU - Das, Enny PY - 2014/02/05 TI - Emotional Coping Differences Among Breast Cancer Patients From an Online Support Group: A Cross-Sectional Study JO - J Med Internet Res SP - e28 VL - 16 IS - 2 KW - Internet KW - support groups KW - self-help groups KW - social support KW - online systems KW - emotions KW - coping style N2 - Background: Due to mixed findings in research on the effect of online peer-to-peer support on psychological well-being, there is a need for studies explaining why and when online support communities are beneficial for cancer patients. Objective: Previous studies have typically not taken into account individual coping differences, despite the fact that patients have different strategies to cope with cancer-related emotions. In the current study, it was predicted that the effects of online support group participation would partly depend on patients? ability to cope with thoughts and emotions regarding the illness. Methods: For this study, 184 Dutch breast cancer patients filled out a questionnaire assessing activity within a peer-led online support community, coping with emotions and thoughts regarding the illness (cognitive avoidance, emotional processing, and expression) and psychological well-being (depression, breast cancer-related concerns, and emotional well-being). Of these, 163 patients were visiting an online peer-led support community. Results: Results showed interactions of the intensity of support group participation and coping style on psychological well-being. Specifically, we found an interaction of online activity and emotional expression on depression (beta=?.17, P=.030), a marginally significant interaction of online activity and emotional expression on emotional well-being (beta=.14, P=.089), and an interaction of online activity and cognitive avoidance on breast cancer?related concerns (beta=.15, P=.027). For patients who actively dealt with their emotions and thoughts, active online support group participation was positively related to psychological well-being. For patients high on avoidance of illness-related thoughts or low on emotional expression, active participation was negatively related to measures of well-being. Conclusions: The current study revealed the role of individual differences in coping in online support group participation. Results suggest that breast cancer patients? ability to cope with emotions and thoughts regarding the illness influence the relationship between online support group participation and psychological well-being. UR - http://www.jmir.org/2014/2/e28/ UR - http://dx.doi.org/10.2196/jmir.2831 UR - http://www.ncbi.nlm.nih.gov/pubmed/24499687 ID - info:doi/10.2196/jmir.2831 ER - TY - JOUR AU - van Mierlo, Trevor PY - 2014/02/04 TI - The 1% Rule in Four Digital Health Social Networks: An Observational Study JO - J Med Internet Res SP - e33 VL - 16 IS - 2 KW - social networks KW - Superusers KW - eHealth KW - 1% rule KW - Pareto Principal KW - 90-9-1 principle KW - moderated support N2 - Background: In recent years, cyberculture has informally reported a phenomenon named the 1% rule, or 90-9-1 principle, which seeks to explain participatory patterns and network effects within Internet communities. The rule states that 90% of actors observe and do not participate, 9% contribute sparingly, and 1% of actors create the vast majority of new content. This 90%, 9%, and 1% are also known as Lurkers, Contributors, and Superusers, respectively. To date, very little empirical research has been conducted to verify the 1% rule. Objective: The 1% rule is widely accepted in digital marketing. Our goal was to determine if the 1% rule applies to moderated Digital Health Social Networks (DHSNs) designed to facilitate behavior change. Methods: To help gain insight into participatory patterns, descriptive data were extracted from four long-standing DHSNs: the AlcoholHelpCenter, DepressionCenter, PanicCenter, and StopSmokingCenter sites. Results: During the study period, 63,990 actors created 578,349 posts. Less than 25% of actors made one or more posts. The applicability of the 1% rule was confirmed as Lurkers, Contributors, and Superusers accounted for a weighted average of 1.3% (n=4668), 24.0% (n=88,732), and 74.7% (n=276,034) of content. Conclusions: The 1% rule was consistent across the four DHSNs. As social network sustainability requires fresh content and timely interactions, these results are important for organizations actively promoting and managing Internet communities. Superusers generate the vast majority of traffic and create value, so their recruitment and retention is imperative for long-term success. Although Lurkers may benefit from observing interactions between Superusers and Contributors, they generate limited or no network value. The results of this study indicate that DHSNs may be optimized to produce network effects, positive externalities, and bandwagon effects. Further research in the development and expansion of DHSNs is required. UR - http://www.jmir.org/2014/2/e33/ UR - http://dx.doi.org/10.2196/jmir.2966 UR - http://www.ncbi.nlm.nih.gov/pubmed/24496109 ID - info:doi/10.2196/jmir.2966 ER - TY - JOUR AU - Kim, Minki AU - Jung, Yuchul AU - Jung, Dain AU - Hur, Cinyoung PY - 2014/02/03 TI - Investigating the Congruence of Crowdsourced Information With Official Government Data: The Case of Pediatric Clinics JO - J Med Internet Res SP - e29 VL - 16 IS - 2 KW - online health community KW - crowdsourcing KW - risk of misinformation KW - public health N2 - Background: Health 2.0 is a benefit to society by helping patients acquire knowledge about health care by harnessing collective intelligence. However, any misleading information can directly affect patients? choices of hospitals and drugs, and potentially exacerbate their health condition. Objective: This study investigates the congruence between crowdsourced information and official government data in the health care domain and identifies the determinants of low congruence where it exists. In-line with infodemiology, we suggest measures to help the patients in the regions vulnerable to inaccurate health information. Methods: We text-mined multiple online health communities in South Korea to construct the data for crowdsourced information on public health services (173,748 messages). Kendall tau and Spearman rank order correlation coefficients were used to compute the differences in 2 ranking systems of health care quality: actual government evaluations of 779 hospitals and mining results of geospecific online health communities. Then we estimated the effect of sociodemographic characteristics on the level of congruence by using an ordinary least squares regression. Results: The regression results indicated that the standard deviation of married women?s education (P=.046), population density (P=.01), number of doctors per pediatric clinic (P=.048), and birthrate (P=.002) have a significant effect on the congruence of crowdsourced data (adjusted R2=.33). Specifically, (1) the higher the birthrate in a given region, (2) the larger the variance in educational attainment, (3) the higher the population density, and (4) the greater the number of doctors per clinic, the more likely that crowdsourced information from online communities is congruent with official government data. Conclusions: To investigate the cause of the spread of misleading health information in the online world, we adopted a unique approach by associating mining results on hospitals from geospecific online health communities with the sociodemographic characteristics of corresponding regions. We found that the congruence of crowdsourced information on health care services varied across regions and that these variations could be explained by geospecific demographic factors. This finding can be helpful to governments in reducing the potential risk of misleading online information and the accompanying safety issues. UR - http://www.jmir.org/2014/2/e29/ UR - http://dx.doi.org/10.2196/jmir.3078 UR - http://www.ncbi.nlm.nih.gov/pubmed/24496094 ID - info:doi/10.2196/jmir.3078 ER - TY - JOUR AU - Sudau, Fabian AU - Friede, Tim AU - Grabowski, Jens AU - Koschack, Janka AU - Makedonski, Philip AU - Himmel, Wolfgang PY - 2014/01/14 TI - Sources of Information and Behavioral Patterns in Online Health Forums: Observational Study JO - J Med Internet Res SP - e10 VL - 16 IS - 1 KW - Internet utilization KW - information dissemination KW - data mining KW - social media KW - social networks KW - multiple sclerosis KW - CCSVI N2 - Background: Increasing numbers of patients are raising their voice in online forums. This shift is welcome as an act of patient autonomy, reflected in the term ?expert patient?. At the same time, there is considerable concern that patients can be easily misguided by pseudoscientific research and debate. Little is known about the sources of information used in health-related online forums, how users apply this information, and how they behave in such forums. Objective: The intent of the study was to identify (1) the sources of information used in online health-related forums, and (2) the roles and behavior of active forum visitors in introducing and disseminating this information. Methods: This observational study used the largest German multiple sclerosis (MS) online forum as a database, analyzing the user debate about the recently proposed and controversial Chronic Cerebrospinal Venous Insufficiency (CCSVI) hypothesis. After extracting all posts and then filtering relevant CCSVI posts between 01 January 2008 and 17 August 2012, we first identified hyperlinks to scientific publications and other information sources used or referenced in the posts. Employing k-means clustering, we then analyzed the users? preference for sources of information and their general posting habits. Results: Of 139,912 posts from 11,997 threads, 8628 posts discussed or at least mentioned CCSVI. We detected hyperlinks pointing to CCSVI-related scientific publications in 31 posts. In contrast, 2829 different URLs were posted to the forum, most frequently referring to social media, such as YouTube or Facebook. We identified a total of 6 different roles of hyperlink posters including Social Media Fans, Organization Followers, and Balanced Source Users. Apart from the large and nonspecific residual category of the ?average user?, several specific behavior patterns were identified, such as the small but relevant groups of CCSVI-Focused Responders or CCSVI Activators. Conclusions: The bulk of the observed contributions were not based on scientific results, but on various social media sources. These sources seem to contain mostly opinions and personal experience. A small group of people with distinct behavioral patterns played a core role in fuelling the discussion about CCSVI. UR - http://www.jmir.org/2014/1/e10/ UR - http://dx.doi.org/10.2196/jmir.2875 UR - http://www.ncbi.nlm.nih.gov/pubmed/24425598 ID - info:doi/10.2196/jmir.2875 ER - TY - JOUR AU - Imanaka, Mie AU - Ando, Masahiko AU - Kitamura, Tetsuhisa AU - Kawamura, Takashi PY - 2013/07/09 TI - Effectiveness of Web-Based Self-Disclosure Peer-to-Peer Support for Weight Loss: Randomized Controlled Trial JO - J Med Internet Res SP - e136 VL - 15 IS - 7 KW - obesity KW - weight loss KW - health support KW - self-disclosure KW - email KW - randomized controlled trial N2 - Background: Obesity is one of the most common public health problems in the industrialized world as a cause of noncommunicable diseases. Although primarily used for one-on-one communication, email is available for uninterrupted support for weight loss, but little is known about the effects of dietitian group counseling for weight control via the Internet. Objective: We developed a Web-based self-disclosure health support (WSHS) system for weight loss. This study aims to compare the effect of weight change between those using the WSHS and those using the email health support (EHS). Methods: This study was designed as an open prospective individual randomized controlled trial. Eligible participants were aged 35 to 65 years with a body mass index (BMI) of ?25.0 in their latest health examination. Participants were randomly assigned to either the WSHS group or the EHS group. Thirteen registered dietitians under the direction of a principal dietitian each instructed 6 to 8 participants from the respective groups. All participants in the WSHS group could receive nutritional advice and calculate their nutritive intake from a photograph of a meal on their computer screen from the Internet sent to them by their dietitian, receive supervision from the registered dietitian, and view fellow participants? weight changes and lifestyle modifications. In the EHS group, a participant could receive one-on-one nutritional advice and calculate his/her nutritive intake from the photograph of a meal on computer screen sent by email from his/her dietitian, without being able to view fellow participants? status. The follow-up period was 12 weeks for both groups. The primary outcome measure was change in body weight. The secondary outcome measure included changes in BMI and waist circumference. The intergroup comparison of the changes before and after intervention was evaluated using analysis of covariance. Results: A total of 193 participants were randomly assigned to either the WSHS group (n=97) or the EHS group (n=96). Ten from the WSHS group and 8 from the EHS group dropped out during the study period, and the remaining 87 in the WSHS group and 88 in the EHS group were followed up completely. Weight loss was significantly greater in the WSHS group than in the EHS group (?1.6 kg vs ?0.7 kg; adjusted P=.04). However, there were few differences in waist circumference between the 2 groups. (?3.3 cm vs ?3.0 cm; adjusted P=.71). Conclusions: Our newly developed WSHS system using forced self-disclosure had better short-term weight loss results. Further study in a longer-term trial is necessary to determine what effects this type of intervention might have on long-term cardiovascular disease. Trial Registration: University Hospital Medical Information Network Clinical Trial Registration (UMIN-CTR): UMIN000009147; https://upload.umin.ac.jp/cgi-open-bin/ctr/ctr.cgi?function=brows&action=brows&type=summary&recptno=R000010719&language=E (Archived by WebCite at http://www.webcitation.org/6HTCkhb1p). UR - http://www.jmir.org/2013/7/e136/ UR - http://dx.doi.org/10.2196/jmir.2405 UR - http://www.ncbi.nlm.nih.gov/pubmed/23838533 ID - info:doi/10.2196/jmir.2405 ER - TY - JOUR AU - van der Eijk, Martijn AU - Faber, J. Marjan AU - Aarts, WM Johanna AU - Kremer, AM Jan AU - Munneke, Marten AU - Bloem, R. Bastiaan PY - 2013/06/25 TI - Using Online Health Communities to Deliver Patient-Centered Care to People With Chronic Conditions JO - J Med Internet Res SP - e115 VL - 15 IS - 6 KW - community networks KW - Internet KW - patient-centered care KW - long-term care KW - chronic disease KW - Parkinson disease N2 - Background: Our health care system faces major threats as the number of people with multiple chronic conditions rises dramatically. Objective: To study the use of Online Health Communities (OHCs) as a tool to facilitate high-quality and affordable health care for future generations. Methods: OHCs are Internet-based platforms that unite either a group of patients, a group of professionals, or a mixture of both. Members interact using modern communication technologies such as blogs, chats, forums, and wikis. We illustrate the use of OHCs for ParkinsonNet, a professional network for Parkinson disease whose participants?both patients and professionals?use various types of OHCs to deliver patient-centered care. Results: We discuss several potential applications in clinical practice. First, due to rapid advances in medical knowledge, many health professionals lack sufficient expertise to address the complex health care needs of chronic patients. OHCs can be used to share experiences, exchange knowledge, and increase disease-specific expertise. Second, current health care delivery is fragmented, as many patients acquire relationships with multiple professionals and institutions. OHCs can bridge geographical distances and enable interdisciplinary collaboration across institutions and traditional echelons. Third, chronic patients lack adequate tools to self-manage their disease. OHCs can be used to actively engage and empower patients in their health care process and to tailor care to their individual needs. Personal health communities of individual patients offer unique opportunities to store all medical information in one central place, while allowing transparent communication across all members of each patient?s health care team. Conclusions: OHCs are a powerful tool to address some of the challenges chronic care faces today. OHCs help to facilitate communication among professionals and patients and support coordination of care across traditional echelons, which does not happen spontaneously in busy practice. UR - http://www.jmir.org/2013/6/e115/ UR - http://dx.doi.org/10.2196/jmir.2476 UR - http://www.ncbi.nlm.nih.gov/pubmed/23803284 ID - info:doi/10.2196/jmir.2476 ER - TY - JOUR AU - Young, Colleen PY - 2013/06/11 TI - Community Management That Works: How to Build and Sustain a Thriving Online Health Community JO - J Med Internet Res SP - e119 VL - 15 IS - 6 KW - online community KW - virtual community KW - health KW - patient KW - health care professional, community management KW - community strategy KW - guidelines KW - tutorial KW - peer-to-peer health UR - http://www.jmir.org/2013/6/e119/ UR - http://dx.doi.org/10.2196/jmir.2501 UR - http://www.ncbi.nlm.nih.gov/pubmed/23759312 ID - info:doi/10.2196/jmir.2501 ER - TY - JOUR AU - Love, Brad AU - M. Thompson, Charee AU - Crook, Brittani AU - Donovan-Kicken, Erin PY - 2013/05/31 TI - Work and ?Mass Personal? Communication as Means of Navigating Nutrition and Exercise Concerns in an Online Cancer Community JO - J Med Internet Res SP - e102 VL - 15 IS - 5 KW - technology KW - young adult KW - psychosocial factors KW - social support KW - cancer KW - communication KW - exercise KW - dietetics KW - Internet N2 - Background: Health and psychosocial outcomes for young adults affected by cancer have improved only minimally in decades, partially due to a lack of relevant support and information. Given significant unmet needs involving nutrition and exercise, it is important to understand how this audience handles information about food and fitness in managing their cancer experiences. Objective: Using the theory of illness trajectories as a framework, we explored how four lines of work associated with living with a chronic illness such as cancer (illness, everyday life, biographical, and the recently explicated construct of communication work) impacts and is impacted by nutrition and exercise concerns. Methods: Following a search to extract all nutrition- and exercise-related content from the prior 3 years (January 2008 to February 2011), a sample of more than 1000 posts from an online support community for young adults affected by cancer were qualitatively analyzed employing iterative, constant comparison techniques. Sensitized by illness trajectory research and related concepts, 3 coders worked over 4 months to examine the English-language, de-identified text files of content. Results: An analysis of discussion board threads in an online community for young adults dealing with cancer shows that nutrition and exercise needs affect the young adults? illness trajectories, including their management of illness, everyday life, biographical, and communication work. Furthermore, this paper helps validate development of the ?communication work? variable, explores the ?mass personal? interplay of mediated and interpersonal communication channels, and expands illness trajectory work to a younger demographic than investigated in prior research. Conclusions: Applying the valuable concepts of illness, everyday life, biographical, and communication work provides a more nuanced understanding of how young adults affected by cancer handle exercise and nutrition needs. This knowledge can help provide support and interventional guidance for the well-documented psychosocial challenges particular to this demographic as they manage the adversities inherent in a young adult cancer diagnosis. The research also helps explain how these young adults meet communication needs in a ?mass personal? way that employs multiple communication channels to meet goals and thus might be more effectively reached in a digital world. UR - http://www.jmir.org/2013/5/e102/ UR - http://dx.doi.org/10.2196/jmir.2594 UR - http://www.ncbi.nlm.nih.gov/pubmed/23728365 ID - info:doi/10.2196/jmir.2594 ER - TY - JOUR AU - Oprescu, Florin AU - Campo, Shelly AU - Lowe, John AU - Andsager, Julie AU - Morcuende, A. Jose PY - 2013/01/22 TI - Online Information Exchanges for Parents of Children With a Rare Health Condition: Key Findings From an Online Support Community JO - J Med Internet Res SP - e16 VL - 15 IS - 1 KW - Online social support KW - Online support communities KW - Clubfoot KW - Uncertainty management KW - Health communication KW - Health information seeking and provision N2 - Background: The Internet provides new opportunities for parents of children with difficult illnesses and disabilities to find information and support. The Internet is particularly important for caregivers of children with special needs due to numerous health-related decisions they face. For at-risk populations, online support communities can become key settings and channels for health promotion and communication. Objective: This study is an initial exploration of the information-seeking and information-provision processes present in an online support community, which is an area of opportunity and interest for Internet-based medical research and practice. The aim of this study was to explore and describe information-related processes of uncertainty management in relationship to clubfoot. Specifically, the study explored interpersonal communication (information seeking and provision) in an online support community serving the needs of parents of children with clubfoot. Methods: The study population consisted of messages posted to an online community by caregivers (parents) of children with clubfoot. The theoretical framework informing the study was the Uncertainty Management Theory (UMT). The study used content analysis to explore and categorize the content of 775 messages. Results: Women authored 664 of 775 messages (86%) and men authored 47 messages (6%). Caregivers managed uncertainty through information seeking and provision behaviors that were dynamic and multilayered. The ratio of information-seeking messages to information-provision responses was 1 to 4. All five types of information-seeking behaviors proposed by Brashers? schema were identified, most of them being correlated. Information seeking using direct questions was found to be positively correlated to self-disclosure (r=.538), offering of a candidate answer (r=.318), and passive information seeking (r=.253). Self-disclosure was found to be positively correlated to provision of a candidate answer (r=.324), second-guessing (r=.149), and passive information seeking (r=.366). Provision of a candidate answer was found to be positively correlated with second-guessing (r=.193) and passive information seeking (r=.223). Second-guessing was found to be positively correlated to passive information seeking (r=.311). All correlations reported above were statistically significant (P<0.01). Of the 775 messages analyzed, 255 (33%) identified a medical professional or institution by name. Detailed medical information was provided in 101 (13%) messages, with the main source of information identified being personal experience rather than medical sources. Conclusion: Online communities can be an effective channel for caregivers, especially women, to seek and offer information required for managing clubfoot-related uncertainty. To enhance communication with parents, health care institutions may need to invest additional resources in user-friendly online information sources and online interactions with caregivers of children with special illnesses such as clubfoot. Furthermore, explorations of information-seeking and information-provision behaviors in online communities can provide valuable data for interdisciplinary health research and practice. UR - http://www.jmir.org/2013/1/e16/ UR - http://dx.doi.org/10.2196/jmir.2423 UR - http://www.ncbi.nlm.nih.gov/pubmed/23470259 ID - info:doi/10.2196/jmir.2423 ER - TY - JOUR AU - Chuang, Y. Katherine AU - Yang, C. Christopher PY - 2012/05/03 TI - Interaction Patterns of Nurturant Support Exchanged in Online Health Social Networking JO - J Med Internet Res SP - e54 VL - 14 IS - 3 KW - Social support KW - social media KW - alcoholism N2 - Background: Expressing emotion in online support communities is an important aspect of enabling e-patients to connect with each other and expand their social resources. Indirectly it increases the amount of support for coping with health issues. Exploring the supportive interaction patterns in online health social networking would help us better understand how technology features impacts user behavior in this context. Objective: To build on previous research that identified different types of social support in online support communities by delving into patterns of supportive behavior across multiple computer-mediated communication formats. Each format combines different architectural elements, affecting the resulting social spaces. Our research question compared communication across different formats of text-based computer-mediated communication provided on the MedHelp.org health social networking environment. Methods: We identified messages with nurturant support (emotional, esteem, and network) across three different computer-mediated communication formats (forums, journals, and notes) of an online support community for alcoholism using content analysis. Our sample consisted of 493 forum messages, 423 journal messages, and 1180 notes. Results: Nurturant support types occurred frequently among messages offering support (forum comments: 276/412 messages, 67.0%; journal posts: 65/88 messages, 74%; journal comments: 275/335 messages, 82.1%; and notes: 1002/1180 messages, 84.92%), but less often among messages requesting support. Of all the nurturing supports, emotional (ie, encouragement) appeared most frequently, with network and esteem support appearing in patterns of varying combinations. Members of the Alcoholism Community appeared to adapt some traditional face-to-face forms of support to their needs in becoming sober, such as provision of encouragement, understanding, and empathy to one another. Conclusions: The computer-mediated communication format may have the greatest influence on the supportive interactions because of characteristics such as audience reach and access. Other factors include perception of community versus personal space or purpose of communication. These results lead to a need for further research. UR - http://www.jmir.org/2012/3/e54/ UR - http://dx.doi.org/10.2196/jmir.1824 UR - http://www.ncbi.nlm.nih.gov/pubmed/22555303 ID - info:doi/10.2196/jmir.1824 ER - TY - JOUR AU - Setoyama, Yoko AU - Yamazaki, Yoshihiko AU - Namayama, Kazuhiro PY - 2011/12/29 TI - Benefits of Peer Support in Online Japanese Breast Cancer Communities: Differences Between Lurkers and Posters JO - J Med Internet Res SP - e122 VL - 13 IS - 4 KW - Online support groups KW - social support KW - patients KW - lurkers KW - breast cancer KW - mental health KW - Japan N2 - Background: Web 2.0 has improved interactions among peers on the Internet, especially for the many online patient communities that have emerged over the past decades. Online communities are said to be particularly beneficial peer support resources for patients with breast cancer. However, most studies of online patient communities have focused on those members who post actively (posters), even though there are many members who participate without posting (lurkers). In addition, little attention has been paid to the usage of online communities among non-English-speaking patients. Objective: The present study explored the differences in peer support received by lurkers and posters in online breast cancer communities. It also examined the effects of such support on both groups? mental health. Methods: We conducted an exploratory, descriptive, cross-sectional, Web-based survey among members of four Japanese online breast cancer communities. In an online questionnaire, we asked questions regarding sociodemographics, disease-related characteristics, mental health, participation in online communities, and peer support received from those communities. Results: Of the 465 people who accessed the questionnaire, 253 completed it. Of the respondents, 113/220 (51.4%) were lurkers. There was no significant difference between lurkers and posters with regard to sociodemographic variables. About half of the posters had been given a diagnosis of breast cancer less than a year previously, which was a significantly shorter period than that of the lurkers (P = .02). The 5 support functions extracted by factor analysis were the same for both posters and lurkers. These were emotional support/helper therapy, emotional expression, conflict, advice, and insight/universality. When the support scores were calculated, insight/universality scored highest for both posters and lurkers, with scores that were not significantly different between the two groups. Among the 5 support scores, emotional support/helper therapy and emotional expression were significantly higher among posters. For posters, emotional support/helper therapy and advice were negatively correlated with the anxiety subscale of the Hospital Anxiety and Depression Scale. Emotional expression, advice, and insight/universality were negatively correlated with the anxiety subscale for lurkers. Conclusion: We found that posters felt they received more benefits from online communities than lurkers did, including emotional support, helping other patients, and expressing their emotions. Yet even lurkers were found to gain a certain amount of peer support through online communities, especially with regard to advice and insight/universality. The results demonstrate that participation in online communities?even as a lurker?may be beneficial to breast cancer patients? mental health. UR - http://www.jmir.org/2011/4/e122/ UR - http://dx.doi.org/10.2196/jmir.1696 UR - http://www.ncbi.nlm.nih.gov/pubmed/22204869 ID - info:doi/10.2196/jmir.1696 ER - TY - JOUR AU - Van Uden-Kraan, F. Cornelia AU - Drossaert, HC Constance AU - Taal, Erik AU - Smit, M. Willem AU - Bernelot Moens, J. Hein AU - Van de Laar, AFJ Mart PY - 2011/12/07 TI - Determinants of Engagement in Face-to-Face and Online Patient Support Groups JO - J Med Internet Res SP - e106 VL - 13 IS - 4 KW - patients KW - support groups KW - online communities KW - breast cancer KW - fibromyalgia KW - rheumatoid arthritis KW - theory of planned behavior N2 - Background: Although peer-to-peer contact might empower patients in various ways, studies show that only a few patients actually engage in support groups. Objective: The objective of our study was to explore factors that facilitate or impede engagement in face-to-face and online peer support, using the Theory of Planned Behavior. Methods: A questionnaire was completed by 679 patients being treated for arthritis, breast cancer, or fibromyalgia at two Dutch regional hospitals. Results: Our results showed that only a minority of the patients engaged in organized forms of peer support. In total 10% (65/679) of the respondents had engaged in face-to-face meetings for patients in the past year. Only 4% (30/679) of the respondents had contact with peers via the Internet in the past year. Patients were more positive about face-to-face peer support than about online peer support (P < .001). In accordance with the Theory of Planned Behavior, having a more positive attitude (P < .01) and feeling more supported by people in the social environment (P < .001) increased the intention to participate in both kinds of peer support. In addition, perceived behavioral control (P = .01) influenced the intention to participate in online peer support. Nevertheless, the intention to engage in face-to-face and online peer support was only modestly predicted by the Theory of Planned Behavior variables (R2 = .33 for face-to-face contact and R2 = .26 for online contact). Conclusion: Although Health 2.0 Internet technology has significantly increased opportunities for having contact with fellow patients, only a minority seem to be interested in organized forms of peer contact (either online or face-to-face). Patients seem somewhat more positive about face-to-face contact than about online contact. UR - http://www.jmir.org/2011/4/e106/ UR - http://dx.doi.org/10.2196/jmir.1718 UR - http://www.ncbi.nlm.nih.gov/pubmed/22155649 ID - info:doi/10.2196/jmir.1718 ER -