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

Abstract

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.