The Role of Online Support Groups in Helping Individuals Affected by HIV and AIDS: Scoping Review of the Literature

Introduction

Background

According to the Joint United Nations Programme on HIV and AIDS, it is estimated that approximately 38 million people are living with HIV and AIDS worldwide [1]. Although there is currently no cure, it is possible to suppress the virus to levels that are undetectable using antiretroviral drugs. Nevertheless, a new diagnosis of HIV brings with it several challenges [2,3]. Individuals receiving a positive diagnosis of HIV will likely face a lifetime of medical treatment to combat the biomedical repercussions of the disease. Individuals also face many psychological challenges because of living with a long-term, highly stigmatized condition [4,5], which may lead to uncertainty about the future. Individuals living with HIV and AIDS may experience social isolation [6], fear of prejudice [7], and loneliness [8] as they learn to adjust to their diagnosis and a lifetime of daily multiple medications [9]. If individuals have problems adjusting to living with HIV and AIDS, clinical depression, anxiety, stress, and poor coping are common [10]. Of particular concern is the prevalence of depression and suicide among people living with HIV and AIDS [11-13].

Evidence suggests that individuals living with HIV and AIDS who are satisfied with the level of social support they receive are more likely to adjust positively, cope better, and experience a slower progression of HIV-related symptoms [14]. Furthermore, research has shown that social support plays a pivotal role in managing the stress associated with HIV and leads to better psychological and physical health outcomes among individuals living with the disease [15,16].

As global access to the internet continues to increase [17], recent technological advances have led to the development of diverse forms of electronic communication, which in turn have supported participation, collaboration, and information sharing between users. An example that illustrates the potential for users to interact with peers on the web is through the medium of online support groups. Such groups allow individuals to come together to share experiences, provide mutual support, and ask questions. Online support groups can be underpinned by different platforms such as discussion forums, chat rooms, social networking sites (eg, Facebook), blogs, microblogs (eg, Twitter), and virtual reality environments. Although such platforms may offer synchronous interaction (ie, live and in real time), most online support groups are asynchronous, where interaction and the exchange of user-generated content takes place over time (ie, hours, days, weeks, or months), and are predominantly text based.

In recent years, there has been an exponential increase in the number of online support groups that have been established to help those affected by long-term conditions, including HIV and AIDS. Similarly, the number of internet users accessing online support groups continues to increase, with recent estimates suggesting that between 7% and 28% of adults have accessed one [18,19].

Evidence suggests that there may be a range of factors that can lead individuals to engage with asynchronous text-based online support groups. In a review of the literature, Wright [20] described 4 broad factors evident within the studies. First, the convenience of computer-mediated communication may be attractive to individuals. For example, an asynchronous text-based online support group is potentially available 24 hours per day, 7 days per week and can be accessed whenever it is needed [21]. This flexibility in access permits individuals to seek support at times and places that are convenient to them and may be helpful to those with family, educational, or work commitments [22-24]. Second, individuals may have limited access to adequate social support within traditional social networks. This may be because people in an individual’s social network have little or no experience or understanding of their condition. Indeed, their condition may not be well understood by health professionals, or it may be rare. Third, individuals may be living with a condition that is stigmatized and, therefore, online support groups may be regarded as a safe environment in which they can discuss personal or sensitive issues [25,26]. Fourth, individuals have reported the value of being able to interact with others who are similar and credible [27]. Taken together, it is evident that online support groups may be relevant and potentially beneficial for individuals living with HIV and AIDS.

However, it should be noted that online support groups are not without their limitations. For example, the asynchronous text-based nature of most online support groups means that social cues such as facial expressions, tone of voice, and body language are not available, and this may cause challenges for users [28]. In addition, the absence of physical proximity restricts the expression of physical affection (eg, hugs), and users may feel isolated and alone in their real lives after logging off [24]. There may also be delays in responses being posted to the group, and this may negatively affect the user experience and satisfaction with online support groups [21]. Concerns have also been expressed regarding both the quantity and quality of posts and information [29,30]. Finally, there may exist a dominance of negative content as users are more likely to post messages during times when their symptoms are especially problematic, and this may cause additional anxiety and concern for those reading these posts [24].

Rationale for the Study

The internet affords new opportunities to support those living with a stigmatized condition such as HIV and AIDS. Online support groups provide a convenient, anonymous, and increasingly popular way to reach out to similar people for information, advice, and support. In addition, increasing attention has been given to online support groups by policy makers [31]. However, there has been no attempt to review the evidence on the possible benefits (or limitations) of HIV and AIDS–related online support groups as well as the types of social support that may be exchanged between users. In this scoping review, both the quantitative and qualitative literature will be identified, described, and synthesized.

Aim and Review Questions

The primary aim of this scoping review was to describe the literature on the utility of online peer support groups for individuals affected by HIV and AIDS, and 3 key questions informed our review. We did not make any assumptions about whether quantitative or qualitative studies would ultimately be used to address each question. Rather, our scoping review set out to establish what types of evidence existed that could help address each of the research questions. Our questions were as follows: (1) Does engagement with online peer support groups improve psychosocial well-being and illness management among those living with HIV and AIDS? (2) Are there any negative aspects of online support groups experienced by individuals living with or affected by HIV and AIDS? If so, what are these? (3) What types of social support are exchanged within online support groups for individuals living with or affected by HIV and AIDS?

Methods

Search Strategy and Procedure

Following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist, our search strategy protocol was published in PROSPERO (registration CRD42020161119). MEDLINE, PubMed, EMBASE, CINAHL, PsycINFO, CENTRAL (Cochrane Register of Controlled Trials), Scopus, and Google Scholar were searched electronically. The search strategy focused on 2 central concepts: the intervention (ie, online support groups) and the population (ie, individuals living with or affected by HIV and AIDS). It was developed using a combination of Medical Subject Headings and keywords with no study design filter. In addition, the references of the selected articles were hand searched for any additional relevant studies. The searches were conducted in April 2022 (for an example of the MEDLINE search and PRISMA checklist, see Multimedia Appendices 1 and 2).

Inclusion and Exclusion Criteria

To be eligible for inclusion in our scoping review, an article needed to (1) be peer-reviewed and (2) meet the inclusion criteria detailed in Textbox 1. These criteria were developed using the Population, Intervention, Comparator, Outcome, Setting, and Study Design model. We did not apply any restrictions with regard to date of publication. Our inclusion and exclusion criteria were developed such that we could focus solely on the unique contribution of text-based HIV and AIDS–related online support groups; therefore, we chose to exclude studies in which this support was combined with other forms of support.

Study Selection

The 2 authors (NSC and HB) reviewed the titles and abstracts independently to identify potentially relevant articles. Abstracts not meeting the inclusion criteria were excluded. In cases where the abstract signaled potential eligibility, the full article was retrieved. Inclusion was based on agreement between both authors, and all reasons for exclusion were noted. In all instances of disagreement, discussion took place until the conflict was resolved.

Data Extraction and Data Synthesis

Predetermined study characteristics (ie, study aim, methods, data source, sample, and data analysis) as well as results (ie, quantitative findings, identified positive or negative outcomes, experiences or attributes, and types and frequencies of social support) were extracted by each of the 2 authors independently. To support this process, the review tool Covidence was used, and the extraction template was modified to support the specific requirements of the scoping review. Each of the 2 authors independently extracted the study characteristics and findings before discussing and agreeing on the final extraction content, which was then entered into a specific section of the Covidence data extraction template. To address each of the research questions, we used both narrative (ie, tabulation of findings from individual primary studies) and thematic (ie, an inductive approach to generate descriptive or analytical themes) synthesis.

Results

Included Studies

Our search strategy yielded 4786 studies, including 1454 (30.38%) duplicates. From the 3332 titles and abstracts reviewed, 2993 (89.83%) did not meet the inclusion criteria. The full texts of the remaining 57 studies were assessed, and a further 35 (61%) were excluded as they did not meet the inclusion criteria (Table 1) or were duplicates (n=11, 19%). Overall, there were 22 papers included in our review. Figure 1 presents the PRISMA flow diagram.

‎View this figure

Study Characteristics

For those studies included in the review, further details are provided in Table 2. As indicated, of the 22 studies, 5 (23%) were quantitative studies, 2 (9%) were mixed methods studies, and 15 (68%) were qualitative studies.

Of the 6 quantitative designs (n=5, 83% quantitative studies and n=1, 17% mixed methods studies), only 1 (17%) was longitudinal and measured changes in HIV-related stigma over time [37]. The other 83% (5/6) of the quantitative studies were cross-sectional, measuring engagement with online support groups at only 1 time point [42,46-49]. The qualitative studies and the qualitative component of the mixed methods studies undertook an analysis of user-generated content [14,32-34,36,37,39-41,43-45,50,51] or interviewed online support group members [35,38], with 6% (1/17) of the studies analyzing the content of responses to open-ended questions [29].

As can be seen in Table 2, publication dates for the included studies ranged from 2007 to 2019; 45% (10/22) of the studies were published within the last 5 years, with 36% (8/22) being published within the last 10 years and 18% (4/22) being >10 years old. As judged by the address for the lead or corresponding author, the research teams were based in the United States (9/22, 41%), China or Hong Kong (5/22, 23%), the United Kingdom (4/22, 18%), Singapore (2/22, 9%), Australia (1/22, 5%), and Saudi Arabia (1/22, 5%). Online support groups included public and private asynchronous forums, microblogging websites, Facebook groups, and an email listserv. Across the 22 included studies, a total of 27,421 user-generated messages were analyzed along with 87 interviews and 1527 survey responses.

Synthesis of Results

Research Question 1: Does Engagement With Online Peer Support Groups Improve Psychosocial Well-being and Illness Management in Those Diagnosed With HIV and AIDS?

Overview

To address this research question, data were extracted and synthesized from 100% (5/5) of the quantitative studies [42,46-49] and the quantitative data from 50% (1/2) of the mixed methods studies [37]. These data are presented in Table 3 synthesized into a single theme (Positive and negative associations between engagement and psychosocial outcomes). Next, we extracted data from 27% (4/15) of the qualitative studies [14,35,38,39] and the qualitative data from 50% (1/2) of the mixed methods studies [29]. We synthesized this into a single theme (Connecting with similar others) capturing the positive impact of engagement on psychosocial well-being and illness management.

Positive and Negative Associations Between Engagement and Psychosocial Outcomes

Of the 6 quantitative studies, only 1 (17%) was a longitudinal investigation. Flickinger et al [37] examined changes in HIV-related stigma over time (ie, at baseline and after 12 months). Although there was a reduction in HIV-related stigma, this was not significant.

A total of 23% (5/22) of the studies adopted a cross-sectional approach when considering the relationship between engagement with online support groups and psychosocial well-being and illness management. Using the same data set, 9% (2/22) of the studies [46,49] found that engagement with online support groups was positively associated with greater exposure to a number of “empowering processes.” These, in turn, were positively associated with adaptive coping, self-care self-efficacy, optimism, and quality of life [46] and lower levels of loneliness and depression [49]. A paper from this data set [46] considered whether these differences would exist when engagement was viewed in terms of “lurking” (ie, not posting any messages) versus “posting,” but no differences were found in terms of self-care self-efficacy, loneliness, depression, or optimism. Similarly, no differences were found between frequent and infrequent users of online support groups in relation to perceived social support [47]. However, other sociodemographic and medical factors were predictive of perceived online support in 5% (1/22) of the studies [42]. Indeed, this study found that people living with HIV and AIDS perceived higher levels of social support from their online support group than from their offline networks.

Connecting With Similar Others

This theme captured the way in which engagement with HIV and AIDS–related online support groups was considered beneficial to individuals in terms of improving their psychosocial well-being and illness management. The qualitative studies illuminated how online support groups provided an opportunity to meet and interact with other individuals who were currently experiencing or had in the past experienced similar issues and challenges [14,29,35,38,39]. Through the sharing of personal experiences, thoughts, and feelings as well as messages offering congratulations, gratitude, and acknowledgment, a sense of camaraderie and group cohesion was developed. In addition, 5% (1/22) of the studies described how the exchange of informational and emotional support was helpful to group members [35]. Together, the ability to connect and engage in mutually supportive interaction helped individuals in terms of their self-worth [14,39] and outlook as well as mitigating the negative impacts of stigma [38]. A total of 5% (1/22) of the studies [29] described how this mutually supportive interaction also benefited individuals in terms of better illness management and improved confidence when communicating with health care professionals.

Research Question 2: Are There Any Negative Aspects of Online Support Groups Experienced by Individuals Living With HIV and AIDS? If So, What Are These?

Overview

To address this research question, data were extracted and synthesized from 33% (5/15) of the qualitative studies [29,32,35,36,39] and the qualitative data from 50% (1/2) of the mixed methods studies [37]. Three themes capturing the negative aspects of online support groups experienced by users were generated from the findings (Table 4): (1) challenging behavior, (2) difficult content, and (3) negative consequences of the web-based platform.

Challenging Behavior

This theme was concerned with behavior of group members that was considered inappropriate. Some studies (2/6, 33%) described how members felt that the behavior of others was inappropriate, unkind, disrespectful, or attacking or was trying to ridicule others [29,39].

Negative Content

Several studies (4/6, 67%) reported how the content posted to the online support groups was negative or difficult to deal with. For example, Flickinger et al [35] reported instances of complaining, vulgarity, bad language, taboo topics, excessive personal information, and religiosity. Furthermore, the challenge of being exposed to posts that were disturbing or disruptive to the community, such as posts expressing suicidal thoughts or mental health concerns, was highlighted [36]. Asiri et al [32] also reported instances in which some of the content posted on the web appeared to be judging or ascribing blame to individuals for their HIV status.

Negative Consequences of the Web-Based Platform

A range of issues was identified that reflected the negative consequences arising from the platform underpinning the online support group. For example, 33% (2/6) of the studies noted the difficulties arising from the fact that group members were not physically copresent [35], and this presented challenges in terms of forming web-based relationships [29]. However, some concerns were also expressed regarding overreliance on these web-based relationships and the potential for a decline in real-world relationships as a possible consequence [29]. Concerns were also expressed regarding the quantity and quality of information exchanged between group members. For example, Flickinger et al [35] noted the difficulties experienced by individuals when trying to keep up with conversations on the web, whereas other studies (1/6, 17%) reported difficulties regarding both information overload and accuracy [29]. Flickinger et al [35] described problems concerning a lack of activity or immediacy of feedback on members’ posts. In addition, they noted concerns regarding the lack of anonymity in group participation. Asiri et al [32] also identified concerns regarding privacy and disclosure in their study.

Research Question 3: What Types of Social Support Are Exchanged Within Online Support Groups for Individuals Affected by HIV or AIDS?

To address this research question, data were extracted and synthesized from 73% (11/15) of the qualitative studies [14,33-35,39-41,43-45,51], which analyzed user-generated content for evidence of social support exchange. These are presented in Table 5. Most studies (8/11, 73%) included sufficient detail to populate Table 5 but, in some instances, we undertook a simple calculation from the available data to report support requests or provision.

All studies used the message as the level of analysis except for the study by Maestre et al [44], which used the utterance. All studies (11/11, 100%) used a deductive analytical approach, with 55% (6/11) of the studies [14,33,35,39,44,45] using the Social Support Behavior Code developed by Cutrona and Suhr [52] as their underpinning coding framework. From the remaining studies, 9% (1/11) [41] combined the Social Support Behavior Code with interaction process analysis, 9% (1/11) [43] used a social support conceptual framework developed by House and Kahn [53], and 9% (1/11) [51] were guided by the typology described by Wright et al [54]. A further 18% (2/11) of the studies [34,41] stated that researchers with experience in public health developed the categories of social support to be coded.

A total of 82% (9/11) of the studies distinguished between social support requests and provision [14,33-35,39,41,43,44,51]. Of these 9 studies, 2 (22%) [34,44] reported a higher percentage of support requests than support provision, whereas 7 (78%) [14,33,35,39,41,43,51] reported a higher percentage of messages classified as providing social support. In terms of support requests, 36% (4/11) of the studies reported emotional support as being the most frequently requested [35,39,41,43], and 27% (3/11) reported informational support as being the most frequently requested [14,44,51]. For support provision, 55% (6/11) of the studies [14,33,43-45,51] reported informational support as being the most prevalent type of social support offered, with 9% (1/11) [35] reporting emotional support as being the most common and 9% (1/11) [39] reporting esteem support as being the most common. Only Guo and Goh [40] considered how the exchange of social support changed over time. They found that socioemotional messages exceeded informational support messages over time.

Discussion

Principal Findings

Online support groups offer new opportunities for those living with HIV and AIDS to access information, advice, and mutual peer support. To our knowledge, this is the first scoping review to synthesize the evidence regarding HIV or AIDS–related online support groups. Our review had three aims; we sought to determine (1) whether engagement with online peer support groups improved psychosocial well-being and illness management for those living with HIV and AIDS; (2) whether there existed any negative aspects of online support groups experienced by individuals living with or affected by HIV and AIDS and, if so, what were they; and (3) what types of social support were exchanged within online support groups for individuals living with or affected by HIV and AIDS. We addressed the first research question by synthesizing the findings of a range of published quantitative, mixed methods, and qualitative studies. The second and third research questions were answered by synthesizing the findings of published qualitative studies.

In terms of our first research question, no randomized controlled trials of the impact of engagement with HIV and AIDS–related online support groups on psychosocial well-being and illness management were identified. However, we did extract relevant findings from quantitative and qualitative studies as well as the quantitative component of a mixed methods study. There was limited quantitative evidence that engagement with online peer support groups improves psychosocial well-being. Indeed, the only longitudinal study conducted over a 12-month period [37] reported no changes in HIV-related stigma. All the cross-sectional studies (5/22, 23%) reported an association between engagement with HIV or AIDS–related online support groups and psychosocial well-being and illness management [42,46-49]; however, it is difficult to make any causal inference owing to the cross-sectional nature of the studies. In terms of qualitative evidence, benefits arising from engagement with HIV and AIDS–related online support groups were reported across all the studies (15/22, 68%), in particular the psychosocial benefits of individuals coming together on the web and sharing their experiences together with the mutual exchange of support. Mo and Coulson [29] described a range of “active ingredients” that may benefit individuals who engage with HIV or AIDS–related online support groups. These included exchanging information, sharing experiences, connecting with others, encountering emotional support, finding recognition, and understanding and helping others. In turn, they identified several psychosocial outcomes that may arise from engagement, including increased optimism and control over the future, improved emotional and social well-being, being better informed, improved coping, and feeling more confident in their relationship with health care professionals.

In relation to our second research question, there were 27% (6/22) of studies reporting qualitative data on the negative aspects of engagement with online support groups. We identified 3 key problematic issues. The first revolved around the challenging behavior of other group members, particularly in terms of interpersonal conflict. Next, we identified the challenge of negative content and how group members could be exposed to online material that was difficult to read. Finally, we noted negative experiences that may arise from the unique features (eg, text-based and asynchronous) of the web-based platforms used to support the online support groups. Specifically, we noted difficulties in forming online relationships but also instances of overreliance on these relationships, which may then negatively affect offline relationships. We also identified concerns regarding both information quantity and quality. These various concerns have been reported elsewhere in the literature [24,27,55] and are potentially serious in nature. However, we currently have little understanding of the long-term impact of these negative experiences on group members. Moving forward, these findings do suggest that online support group moderators or administrators may play a crucial role in achieving the aims of the support group and safeguarding its membership.

Half of the studies included in our review (11/22, 50%) addressed the third research question, which considered the types of social support exchanged within online support groups for individuals living with or affected by HIV and AIDS. In total, 100% (11/11) of the qualitative studies used a deductive analytic approach with a social support framework (or typology) to guide the analysis, with most studies (6/11, 55%) using the Social Support Behavior Code developed by Cutrona and Suhr [52]. There were more studies reporting a higher proportion of support provision than of requests. This may be explained by the asynchronous text-based platforms that were used in the studies. On these platforms, conversational threads are developed by individual group members posting a message and other group members posting replies. Our findings also revealed that emotional and informational support were the types most frequently requested but, in terms of provision, informational support was the most common type of support reported. These findings are consistent with the results of a meta-analytic review of 41 published studies that reported informational and emotional support messages as the most prevalent within health-related online support groups [56].

Strengths and Limitations of This Review

It is important to highlight the strengths of this scoping review. Most notably, we identified, described, and synthesized data from quantitative, qualitative, and mixed methods studies and considered the guidance set out by Booth et al [57] to support this process. In doing so, we believe this has provided the reader with a richer and more holistic insight into the role of online support groups for individuals affected by HIV and AIDS. However, there are also some limitations that should be considered. First, although we searched 7 databases, it is possible that we failed to identify some relevant studies. However, to mitigate this, we also searched Google Scholar as well as hand searching the reference lists of all the included studies. This yielded additional studies that were included in our review. Second, our review may have introduced bias through the inclusion of only studies published in English; thus, we may have overlooked studies published in other languages. Finally, our review identified a few quantitative studies, and those that were included were mostly cross-sectional surveys. Therefore, it becomes difficult to draw definitive conclusions, particularly in relation to the psychosocial benefits arising from engagement with HIV and AIDS–related online support groups.

Recommendations for Future Research

This scoping review has revealed that there exists a growing and diverse body of literature that considers the role of online support groups for people affected by HIV and AIDS. This literature includes quantitative, qualitative, and mixed methods research designs. However, our review also pinpointed specific areas for future research to advance our understanding of the role and impact of online support groups for individuals affected by HIV and AIDS. First, to assess the impact of engagement more fully, future research efforts should seek to develop more robust research designs, including randomized controlled trials and longitudinal studies on both the benefits and harms of engagement. This work should also seek to consider a broader array of psychosocial as well as illness-related outcome measures. Second, as these online support groups may be supported by a range of platforms, future research should seek to explore how the affordances of each platform may influence both engagement and outcomes. Third, our review noted that online support group moderators may play a pivotal role in promoting the aims of the group as well as safeguarding its membership. Therefore, further research examining the function and effectiveness of moderator web-based behavior is warranted. Fourth, as the exchange of informational support appears widespread within online support groups for HIV and AIDS, future work may seek to determine the accuracy of any medical-related information shared and the extent to which it may affect the coping strategies and behaviors of members.

Conclusions

Online support groups provide an opportunity for individuals affected by HIV and AIDS to engage in mutual support. This engagement may be associated with improved illness management as well as a range of beneficial psychosocial outcomes. However, members may experience negative aspects of the online support groups, particularly in terms of interpersonal conflict with other members and content that is challenging. Online support groups for HIV and AIDS can provide a valuable opportunity to both seek and provide social support, notably informational and emotional support.