Examining BRCA Previvors’ Social Media Content Creation as a Form of Self and Community Care: Qualitative Interview Study

Introduction

As the world’s most commonly diagnosed cancer, the urgency to address breast cancer and support those with an increased risk of developing this disease has become even more important [Breast cancer now most common form of cancer: WHO taking action. World Health Organization. 2021. URL: https:/​/www.​who.int/​news/​item/​03-02-2021-breast-cancer-now-most-common-form-of-cancer-who-taking-action [accessed 2023-06-20] 1]. In 2020, the World Health Organization reported 2.3 million globally diagnosed cases of breast cancer, along with 685,000 deaths attributed to the disease [Breast cancer now most common form of cancer: WHO taking action. World Health Organization. 2021. URL: https:/​/www.​who.int/​news/​item/​03-02-2021-breast-cancer-now-most-common-form-of-cancer-who-taking-action [accessed 2023-06-20] 1]. In many cases, breast cancer occurs sporadically. However, genetic factors do play an influential role in 10% to 15% of all cases [Mittal A, Pramanik R, Gogia A, Batra A, Jha A, Kumar L, et al. 155P profile of pathogenic mutations and evaluation of germline genetic testing criteria in consecutive breast cancer patients treated at a North Indian tertiary care center. Annals of Oncology. 2021;32:S87-S88. [CrossRef]2]. Like breast cancer, the risk of ovarian cancer also increases in women with age, along with having inherited genetic traits such as a BRCA1 or BRCA2 gene mutation [Momenimovahed Z, Tiznobaik A, Taheri S, Salehiniya H. Ovarian cancer in the world: epidemiology and risk factors. Int J Womens Health. 2019;11:287-299. [FREE Full text] [CrossRef] [Medline]3]. In 2020, ovarian cancer was the third most prevalent and lethal gynecological cancer worldwide [Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram I, Jemal A, et al. Global cancer statistics 2020: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2021;71(3):209-249. [FREE Full text] [CrossRef] [Medline]4-Huang J, Chan WC, Ngai CH, Lok V, Zhang L, Lucero-Prisno DE, et al. Worldwide burden, risk factors, and temporal trends of ovarian cancer: a global study. Cancers (Basel). 2022;14(9):2230. [FREE Full text] [CrossRef] [Medline]6].

With continued research and treatment of breast and ovarian cancer, it has become more common for medical providers to encourage genetic testing, especially for those whose relatives who have been diagnosed with cancer [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7-Jacobs C, Patch C, Michie S. Communication about genetic testing with breast and ovarian cancer patients: a scoping review. Eur J Hum Genet. 2019;27(4):511-524. [CrossRef] [Medline]9]. Women who test positive for a BRCA genetic mutation are at a higher risk of developing hereditary breast and ovarian cancer, which impacts their health, reproductive choices, and identity [Getachew-Smith H, Ross AA, Scherr CL, Dean M, Clements ML. Previving: how unaffected women with a mutation navigate previvor identity. Health Commun. 2020;35(10):1256-1265. [CrossRef] [Medline]10,Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11]. Within their lifetime, individuals with a BRCA mutation have up to a 75% increased risk in developing breast or ovarian cancer [Hereditary breast and ovarian cancer. American Society of Clinical Oncology. 2020. URL: https://www.cancer.net/cancer-types/hereditary-breast-and-ovarian-cancer [accessed 2025-02-19] 12]. Those who do test positive for a BRCA genetic mutation and have not yet been diagnosed with cancer are known as “previvors,” a distinction for those at higher risk for developing cancer [Getachew-Smith H, Ross AA, Scherr CL, Dean M, Clements ML. Previving: how unaffected women with a mutation navigate previvor identity. Health Commun. 2020;35(10):1256-1265. [CrossRef] [Medline]10].

Due to the aggressive nature and reduced life expectancy associated with breast and ovarian cancer, it is necessary that the public, especially those who have a family history of breast and ovarian cancer and those who have already tested positive for the genetic mutation, are informed about the risks associated with the mutation that they carry and its impact on one’s health and family planning [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7]. However, previously published research suggests not all medical providers have the information previvors are looking for [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7]. Previvors are looking for medical information and resources from various in-person and online sources regarding the options available to them should they desire to undergo surgery and reconstruction, just undergo surgery, or simply monitor themselves over time [Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11]. However, they are also looking for emotional support from loved ones, especially those who also have this genetic mutation and can provide advice and social support [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7,Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11]. Social media and the ability to create content is a convenient and valuable tool for such purposes, and thus, researchers are exploring how social media is used by those with a BRCA genetic mutation [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7,Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11,Basch CH, Hillyer GC, Yalamanchili B, Morris A. How TikTok is being used to help individuals cope with breast cancer: cross-sectional content analysis. JMIR Cancer. 2022;8(4):e42245. [FREE Full text] [CrossRef] [Medline]13].

BRCA previvors, cancer survivors, and those living with cancer use social media, online blogs, and internet chat rooms to connect with others [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7,Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11,Lazard AJ, Collins MKR, Hedrick A, Varma T, Love B, Valle CG, et al. Using social media for peer-to-peer cancer support: interviews with young adults with cancer. JMIR Cancer. 2021;7(3):e28234. [FREE Full text] [CrossRef] [Medline]14,Kent EE, Smith AW, Keegan THM, Lynch CF, Wu X, Hamilton AS, et al. Talking about cancer and meeting peer survivors: social information needs of adolescents and young adults diagnosed with cancer. J Adolesc Young Adult Oncol. 2013;2(2):44-52. [FREE Full text] [CrossRef] [Medline]15]; however, much of the research on these communities is done through the lens of those seeking information, support, and connection rather than creating it [Tai E, Buchanan N, Townsend J, Fairley T, Moore A, Richardson LC. Health status of adolescent and young adult cancer survivors. Cancer. 2012;118(19):4884-4891. [FREE Full text] [CrossRef] [Medline]16,Lang MJ, David V, Giese-Davis J. The age conundrum: a scoping review of younger age or adolescent and young adult as a risk factor for clinical distress, depression, or anxiety in cancer. J Adolesc Young Adult Oncol. 2015;4(4):157-173. [FREE Full text] [CrossRef] [Medline]17]. When patients first began searching for information and for others in similar situations, they often did so through online platforms that afford a built-in community like chat rooms or message boards [Kent EE, Smith AW, Keegan THM, Lynch CF, Wu X, Hamilton AS, et al. Talking about cancer and meeting peer survivors: social information needs of adolescents and young adults diagnosed with cancer. J Adolesc Young Adult Oncol. 2013;2(2):44-52. [FREE Full text] [CrossRef] [Medline]15]. More recently, however, patients are using their own personal social media accounts to tell their stories on an individual level, hoping to build community on their own terms [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7,Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11,Basch CH, Hillyer GC, Yalamanchili B, Morris A. How TikTok is being used to help individuals cope with breast cancer: cross-sectional content analysis. JMIR Cancer. 2022;8(4):e42245. [FREE Full text] [CrossRef] [Medline]13]. Individuals with breast and ovarian cancer communicate information that is personal or social on their individual accounts, with two-thirds of posts conveying actual experiences or providing support to others [Biancovilli P, Makszin L, Csongor A. Breast cancer on social media: a quali-quantitative study on the credibility and content type of the most shared news stories. BMC Womens Health. 2021;21(1):202. [FREE Full text] [CrossRef] [Medline]18]. Using social media in this way distracts users from the stresses they may be experiencing that are caused by new, recurring, or terminal illnesses [Wolfers L, Utz S. Social media use, stress, and coping. Curr Opin Psychol. 2022;45:101305. [FREE Full text] [CrossRef] [Medline]19].

As a shift has occurred from group-centered platforms to individual storytelling spaces, there remain significantly fewer social media posts engaging with BRCA and genetic testing [Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11]. However, there are social media users increasing the amount of BRCA content being created, and health communication and internet scholars must pay attention to these individuals and their content [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7,Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11]. As mentioned earlier, most research on social media and BRCA previvors has examined how previvors find information, rather than create it themselves, although the lens through which scholars are examining this content is shifting [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7,Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11]. Considering the limited information available, this study aims to add qualitative insights regarding the creation of content by and for BRCA previvors. To accomplish this, we conducted semistructured interviews with BRCA previvors who create social media content related to their health condition and identity as previvors. Trends and themes were analyzed across the interview transcripts regarding BRCA previvors, social media, content creation, and connection within digital spaces. At the start of this study, we asked the following research questions: (1) Why do BRCA previvors create content on their personal social media accounts rather than in the digital communities created for BRCA previvors such as Facebook (Meta) groups? and (2) How do BRCA previvors perceive their social media content creation serving a purpose to their larger community?

Through qualitative interviews with a selective group of BRCA previvors who post personal medical experiences on their own social media accounts, this study offers a novel perspective on the trend of sharing health information online. Through prioritizing the words of our participants, we believe this study provides insight into the thoughts, feelings, and experiences of individual BRCA previvors and can help researchers and health care providers understand the ongoing needs of patients with BRCA genetic mutations.

Methods

Recruitment and Data Collection

To examine BRCA previvors’ experiences creating social media content for themselves and for their larger community, we used a qualitative interview approach. We prioritized recruiting individuals living in the United States who have been found to carry a BRCA1 or BRCA2 genetic mutation, resulting in an increased risk for developing breast or ovarian cancer, and publicly shared about their medical experiences on social media, specifically Instagram (Meta). First, the primary investigator conducted a purposive sample by searching for BRCA previvors active on Instagram through hashtags including “#brca,” “#brca1,” “#previvor,” “#brcagene,” and “#breastcancerprevivor.” Once the accounts were populated, the investigator reached out to potential participants who listed their email addresses publicly on their Instagram accounts. We acknowledge that the algorithm on social media platforms like Instagram may have played a role in our sample procedure; however, we were interested in interviewing individuals who acted as influencers, opinion leaders, and public figures in BRCA online communities and, therefore, recognized that the most popular accounts may be the most accessible by using this purposive sampling method. Upon finding these individual accounts with publicly listed email addresses, the primary researcher sent an email detailing the study objectives and requesting potential participants to respond if interested. Of the total study participants (N=16), 15 identified as women and 1 identified as nonbinary. The nonbinary participant noted that they are often perceived as female and check “woman” as the gender on their medical paperwork for insurance purposes. All participants were White presenting; however, 2 identified as Hispanic and 2 identified as Ashkenazi Jewish. The latter group noted their ethnicity as important to their BRCA status, as 1 in 40 Ashkenazi Jewish women have a BRCA genetic mutation [Jewish woman and BRCA gene mutations. Hereditary breast cancer and BRCA genes. Centers for Disease Control and Prevention. URL: https:/​/www.​cdc.gov/​cancer/​breast/​young_women/​bringyourbrave/​hereditary_breast_cancer/​jewish_women_brca.​htm#:~:text=One%20in%2040%20Ashkenazi%20Jewish,cancer%20at%20a%20young%20age [accessed 2023-03-21] 20]. Participants were all over the age of 18 years at the time of the interview, and all confirmed that they are actively posting about their BRCA experiences publicly on one or more social media platforms.

Participants who met all eligibility criteria were then scheduled for a virtual, semistructured interview over Zoom (Zoom Video Communications). Consent forms were signed before the interview was scheduled, and verbal consent was confirmed once again before the interview began. All interviews were conducted by the primary investigator, and each participant was provided the opportunity to turn their camera off before the interview began to further protect their identity. The interviews included questions related to the participants’ experiences with BRCA, their desire to create content on their personal social media accounts, their interactions with the BRCA community, their understanding of their previvor identity, and their relationship with health care providers. Each interview lasted between 45 and 60 minutes. The interviews were audio recorded for accuracy, and upon completion of the discussion, each interview audio file was labeled with a participant number. After all personal identifying information was removed from the files and the audio recordings, they were transcribed by a professional transcription service.

Data Analysis

Reflexive thematic analysis [Clarke V, Braun V. Thematic analysis. The Journal of Positive Psychology. 2016;12(3):297-298. [CrossRef]21,Braun V, Clarke V. What can "thematic analysis" offer health and wellbeing researchers? Int J Qual Stud Health Well-being. 2014;9:26152. [FREE Full text] [CrossRef] [Medline]22] was applied by the principal investigator and supported by a graduate research assistant. This analysis method has been applied in recent studies of women with BRCA genetic mutations and how they share social media content, build community, and understand their identity as BRCA previvors [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7,Getachew-Smith H, Ross AA, Scherr CL, Dean M, Clements ML. Previving: how unaffected women with a mutation navigate previvor identity. Health Commun. 2020;35(10):1256-1265. [CrossRef] [Medline]10,Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11]. First, the principal investigator and graduate research assistant split up the 16 transcripts and manually coded 8 each. They then met and discussed overlapping patterns in the data related to why BRCA previvors post on social media about their previvor experiences and the role content creation plays in the act of community building and caring for oneself through various BRCA experiences. After the first meeting, the principal investigator and graduate research assistant switched transcripts and coded the other set of 8 transcripts. They then met a second time to finalize the themes present that related to the initial research questions. The team elected to follow this 2-stage coding process recommended by previous researchers to maintain the rigor of the method. All direct quotes provided in the results section below are anonymized and referred to by participant number.

Ethical Considerations

As this study involved human participants, the University of Utah’s institutional review board approved the study protocol (IRB_00144720) before we began. An informed consent document was sent to each participant for review before they elected to participate. The document described the nature of the study, the types of questions asked, the protocol researchers followed to protect participant anonymity, and information regarding their rights as research participants including the opportunity to decline to answer any question and stop the interview at any time. The primary researcher kept a password-protected document on an external hard drive, which included the demographic information of each participant, including their name and participant number, to protect their identity but provided a reference sheet for use when needed. All personal identifying information was removed from the files and the audio recordings. The participants who completed the interview process were compensated in the form of a US $50 gift card.

Results

Posting on Social Media Fills a Gap in the Narrative of BRCA Previvorship

The BRCA previvors we interviewed said they create content on their personal social media accounts rather than in digital communities, such as Facebook groups, because they like to be able to control the narrative around their own personal journey and fill a gap in society’s understanding of what it means to be someone living with a BRCA genetic mutation. BRCA previvors desire connection beyond existing previvor and survivor communities, and many noted they create content because they want to share every step in their journey with others, regardless of whether those watching have BRCA genetic mutations or not. One previvor explained that in her opinion, nothing is off limits when you share about BRCA on your own personal page.

I’ve shared every step of the way and there’s nothing, in my opinion, that I shouldn’t share.
[P11]

Similarly, many of the previvors interviewed have shared in-depth videos and photos of surgery scars, drain removals, breast reconstruction, nipple tattoos, and more.

Sharing whatever they choose, whenever they choose results in previvors feeling a deeper sense of autonomy over their lives and control over when and how they talk about BRCA genetic mutations. They do not want to talk strictly about the clinical aspects of their genetic mutation; they want to talk about sex, desire, hormones, body image, and how testing positive for BRCA genetic mutations impacts their identity as a wife, daughter, sister, mother, and friend. One previvor explained that she wanted other women with BRCA genetic mutations who follow her to understand that they may change, both inside and out, but they can still be the same woman they were before being diagnosed and they do not have to allow their BRCA genetic mutation to take away who they once were.

I took people on my journey to show them that you can be strong enough to go through it and come out on top of it and no matter what you look like, it's still you.
[P14]

When discussing BRCA genetic mutations from the clinical perspective, previvors say they sometimes feel like their condition is overgeneralized, which results in feelings of homogeneity, especially in the eyes of their health care providers. In previous studies, previvors noted some providers make assumptions about the care they desire and do not always leave space for individuals to request a treatment plan that works best for them [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7]. One previvor shared her experience defending her decision to forego reconstructive surgery in favor of a flat chest, something she did not know was possible from only speaking to her providers. She found other options through social media and now posts on her Instagram account to help others.

I hope people see (my chest) and they’re like ‘Oh, we can go so many different directions for our BRCA decisions. We don’t just have to have reconstruction or like just a flat chest like’—there’s things where you can make it feel more like you or learning how to make your body feel like yours.
[P15]

Showing a personalized perspective of the previvor experience on social media, previvors say, offers others a chance to see what daily living with BRCA genetic mutations is like, especially for those diagnosed at a young age. Previvors interviewed noted that many young patients with BRCA genetic mutations have different goals regarding their lifestyle, and Facebook groups and online chat rooms do not reflect those previvors and their understanding of BRCA genetic mutations. One previvor noted:

Facebook is just a different type of platform; people are posting pictures or questions or lamenting some situation. Whereas Instagram, it’s more of a story of my life and not just a way to complain. So, I do think it was more helpful to be able to control the content on Instagram and not have anybody disqualify my experience. I think that was my biggest irritation with the Facebook groups. I felt like I was being questioned for whatever decision I was leaning towards. And this way I could just be like, ‘This is what I’m doing. These are my risks. Just wanted you to know.’ Not open for comment or questions or your opinions.’
[P17]

Younger previvors have turned to Instagram and TikTok (ByteDance) to find others with BRCA genetic mutations who have similar experiences and opinions regarding living with a genetic mutation and seeking possible treatments. For example, many younger previvors do not want to take the surgical route immediately after being diagnosed, as they are concerned about infertility, losing the opportunity to breastfeed a future child, and how their future may be dictated by decisions they are making from a young age. One previvor shared that she began posting because she felt like nobody was discussing BRCA genetic mutations from the perspective of a younger woman, especially a woman who wanted to have kids one day.

I started relying on social media to not only like see what other people were saying, especially people my age, but then being able to start talking about it from my personal perspective because I know my friends especially before 30 are like not thinking about (having kids) yet.
[P18]

For this previvor, posting on her social media accounts specifically on what young previvors need to be thinking about is important because she may be able to help another young patient with BRCA genetic mutations make a decision that was not offered by their health care provider.

Previvors View Content Creation as an Act of Self and Community Care

For BRCA previvors, creating content on their own social media accounts focused on their experiences helps them build a sense of autonomy over having a BRCA genetic mutation while taking care of themselves and offering support to others with a genetic mutation. This act of self-care and care for the community was a common explanation for why our interviewees started posting on their personal social media accounts. As one previvor said:

I wanted women to see that they’re not the only ones going through it, that there are other women out there and that it will be okay and that you’re beautiful even with all the scars and that you’re still a woman.
[P14]

Many previvors said their understanding of themselves as a woman shifted once they were diagnosed, and they believe this shift is common among patients with BRCA genetic mutations. BRCA previvors expressed feeling afraid when initially diagnosed and unsure of what the future would hold for them as women, mothers, wives, daughters, and friends. Posting on social media allowed them to discuss their understanding of womanhood after diagnosis, which became an act of self-care and a way to give back to others in their community. Later in the interview, the same previvor shared how she felt upon being diagnosed and how her social media content creation helped her feel more like herself.

For a long time, you don’t know who you are anymore. BRCA is—you were dealt this card, and you try to deal with it, but everything that makes you a woman is taken away from you. You don’t know—it’s like I know my body or my breasts or my ovaries don’t define me as a person or a woman, but that is what makes us a woman and when that’s taken away from you, you have to kind of learn to love yourself again in a different way.
[P14]

Posting on social media provided an outlet for previvors while they learned to love their new bodies, minds, and spirits after diagnosis. In the interviews, some participants said they felt like their BRCA genetic mutation initially stole their voice and that they no longer had a say over their own lives. However, sharing on social media gave them the opportunity to speak about whatever they were going through whenever they felt like they needed to. For one previvor, the posting was a form of therapy.

For me, it was almost like a journal, kind of therapeutic to put it out there in the world and be very open about it and then have—I was surprised how many of my friends and people that follow me that have had breast cancer, how supportive they were. I really expected them to be like the nursing staff, like ‘Oh, you don’t have real cancer,’ but they were all super supportive.
[P03]

The therapeutic nature of posting on individual social media accounts was more helpful for these creators than sharing in chat rooms or Facebook groups, many said. Previvors felt like some chat rooms and online groups have become spaces where toxic positivity runs rampant but, at the same time, can be a place where previvors are judged by others regarding their care and treatment decisions. In the interviews, some previvors described the breast cancer survivor community, and more recently, the previvor community, as a space where media and large organizations “pink-wash” the disease and, thus, take away from the authentic lived experiences of breast cancer survivors and previvors [Lubitow A, Davis M. Pastel injustice: the corporate use of pinkwashing for profit. Environmental Justice. 2011;4(2):139-144. [FREE Full text] [CrossRef]23]. These actions, while they can result in financial gain for some, do not provide the kind of support many previvors say they are looking for. Another previvor explained that the lack of authentic experiences publicized through media outlets and large organizations does a disservice to all people.

There was just a lack of representation and of candid, honest representation. I wanted someone that I could relate to. It wasn’t just like this sob story because like parts of it were funny and weird and so full of love. I know that my story is not everyone else’s, but like somebody’s going to be able to relate to that, right? And also…(I wanted to) talk about sex and like all these things that I’m so used to talking about openly, but other people don’t. So, I was like ‘All right, I’ll just write it all. Hopefully, it will help somebody.’

Others agreed, saying:

it’s so amazing to have the chance to share your voice, no matter what it be about,” and “I post the ugly. I post the good and the bad. I want people to know there is the ugly part of it, but there can be a good part to it too.
[P16]

Ultimately, previvors agreed that sharing on their personal social media accounts is a form of community care and a way to continue building a supportive community. As one previvor noted:

I can take the fear that some women have, that I can show them that ‘You can do it. You will come out on top of this. Don’t let the BRCA run your life. You run BRCA. You can do something’
[P04]

Previvors on social media want others to know they are not alone and that there are spaces where they can be exactly who they are without judgment, even if they must create it themselves. As one previvor summarized:

I think if we keep (our journeys) to ourselves, then we’re not doing any good
[P14]

Discussion

Principal Findings

Studies describing the content creation of BRCA previvors are a relatively understudied area of health communication and medical internet research. The previvors we interviewed noted that they post on their personal social media accounts rather than online spaces created specifically for group communication like chat rooms and Facebook groups because it allows them to control the narrative around their BRCA experience. This finding provides greater nuance to research that claims when patients interact online with others, they feel a sense of social support [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7,Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11]. In addition, this finding provides a greater understanding of those individuals who not only seek health information online [Tai E, Buchanan N, Townsend J, Fairley T, Moore A, Richardson LC. Health status of adolescent and young adult cancer survivors. Cancer. 2012;118(19):4884-4891. [FREE Full text] [CrossRef] [Medline]16,Lang MJ, David V, Giese-Davis J. The age conundrum: a scoping review of younger age or adolescent and young adult as a risk factor for clinical distress, depression, or anxiety in cancer. J Adolesc Young Adult Oncol. 2015;4(4):157-173. [FREE Full text] [CrossRef] [Medline]17] but also create it themselves.

For previvors, controlling the narrative allowed them to speak on the topics they deemed most important and gave them the power to remove or block those who judged or critiqued their choices. This gave our participants a greater sense of power over their situation and reduced their fears around the possibility of pushback from other previvors. Some said they received negative responses from others with BRCA genetic mutations in spaces like Facebook groups but did not receive that feedback on their own social media accounts. BRCA previvors also believed that posting on their personal social media accounts served a greater purpose beyond themselves. They envisioned their content to serve the larger BRCA community in their quest to take care of each other, provide guidance regarding treatment plans and surgery options, and increase the visibility of BRCA genetic mutations itself. This finding extends previous studies that posit the discourse within online spaces has the potential to extend offline and impact the care patients receive [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7,Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11,Basch CH, Hillyer GC, Yalamanchili B, Morris A. How TikTok is being used to help individuals cope with breast cancer: cross-sectional content analysis. JMIR Cancer. 2022;8(4):e42245. [FREE Full text] [CrossRef] [Medline]13,Tai E, Buchanan N, Townsend J, Fairley T, Moore A, Richardson LC. Health status of adolescent and young adult cancer survivors. Cancer. 2012;118(19):4884-4891. [FREE Full text] [CrossRef] [Medline]16,Lang MJ, David V, Giese-Davis J. The age conundrum: a scoping review of younger age or adolescent and young adult as a risk factor for clinical distress, depression, or anxiety in cancer. J Adolesc Young Adult Oncol. 2015;4(4):157-173. [FREE Full text] [CrossRef] [Medline]17].

While our study participants did not bring up any potential risks or negative consequences to sharing their personal health stories online, it is important to consider privacy concerns when one shares personal health information on social media platforms [Liao Y. Sharing personal health information on social media: balancing self-presentation and privacy. 2019. Presented at: SMSociety '19: Proceedings of the 10th International Conference on Social Media and Society; July 19-21, 2019:194-204; Toronto, ON. URL: https://doi.org/10.1145/3328529.3328560 [CrossRef]24,LaMonica HM, Roberts AE, Lee GY, Davenport TA, Hickie IB. Privacy practices of health information technologies: privacy policy risk assessment study and proposed guidelines. J Med Internet Res. 2021;23(9):e26317. [FREE Full text] [CrossRef] [Medline]25]. In addition, there is potential for misinformation to spread in these online health spaces, especially as patients continue to share their experiences on individual accounts that are more difficult to monitor [Suarez-Lledo V, Alvarez-Galvez J. Prevalence of health misinformation on social media: systematic review. J Med Internet Res. 2021;23(1):e17187. [FREE Full text] [CrossRef] [Medline]26,Loeb S, Langford AT, Bragg MA, Sherman R, Chan JM. Cancer misinformation on social media. CA Cancer J Clin. 2024;74(5):453-464. [FREE Full text] [CrossRef] [Medline]27]. While our participants did not mention misinformation as being common within BRCA spaces, as the communities grow, the issue will be important for researchers to consider when evaluating the benefits and risks of these individual storytelling spaces.

Conclusion

This study was strengthened by the in-depth interviews given by each participant, but the study was limited by the number of interviews conducted and the interview process itself. Due to COVID-19 limitations, all interviews were conducted through videoconference, often reducing the opportunity for the interviewer to analyze participants’ body language. In addition, the reliance on virtual interviews means that while we were able to communicate with previvors across the country, each participant’s experiences with their local health care system may differ [Healthy People 2030 (2020). Health care access and quality. U.S. Department of Health and Human Services. URL: https:/​/health.​gov/​healthypeople/​objectives-and-data/​browse-objectives/​health-care-access-and-quality, [accessed 2023-10-17] 28]. In addition, this study relied on the most popular BRCA social media accounts to recruit participants. On platforms like TikTok and Instagram, the algorithm may dictate whose content is promoted and whose is not, which results in a skewed sample, but this does not necessarily mean these stories are less worthy of being told. However, the algorithmic bias present on social media platforms can often result in a list of potential participants who are neither racially nor ethnically diverse. Our study skewed primarily toward White women, which mirrors results found in other recent studies of BRCA previvors on social media [Wellman ML, Holton AE, Kaphingst KA. "Where do I go? Who do I go to?": BRCA previvors, genetic counselors and family planning. PEC Innov. 2023;2:100157. [FREE Full text] [CrossRef] [Medline]7,Wellman ML, Holton AE, Kaphingst KA. Previvorship posting: why breast cancer previvors share their stories on social media. Health Commun. 2023;38(11):2441-2449. [CrossRef] [Medline]11]. We recognize the lack of scholarship exploring racial and ethnic minority patients who have been diagnosed with the BRCA genetic mutation, especially analysis of their online presence and their desire to create digital spaces for the needs of their specific community, and we urge scholars to continue prioritizing these individuals.

Future research should also consider the practice of moderating and censoring of medical conditions based on platform policies, as some of our participants noted their concerns around content being removed or accounts being closed altogether because platforms may deem their content regarding reconstruction and recovery as sexual in nature. Social media platforms are evolving, and the results of their impact on health behaviors and outcomes remain mixed. Therefore, we believe researchers should continue to examine the therapeutic and supportive role of personal social media content across acute and chronic health conditions [Kanchan S, Gaidhane A. Social media role and its impact on public health: a narrative review. Cureus. 2023;15(1):e33737. [FREE Full text] [CrossRef] [Medline]29]. In addition, social media literacy continues to be key in improving health decisions, and research suggests platforms themselves can help in this process [Cho H, Cannon J, Lopez R, Li W. Social media literacy: a conceptual framework. New Media Soc. 2024;26(2):941-960. [FREE Full text] [CrossRef] [Medline]30], especially as more patients share about their health conditions on their personal accounts. As more BRCA previvors take to social media platforms to share their stories and experiences with genetic testing, treatment, patient-provider interactions, and more, researchers should consider conducting studies that rely on quantitative, qualitative, and critical rhetorical methodologies to provide a larger body of work in this specific subfield.