Social media as a tool to explore mental health in pediatric solid organ transplant recipients and their families

Pediatric solid organ transplant (SOT) recipients and their families face complex psychosocial challenges, including increased rates of anxiety, depression, and trauma. Social media is widely used among adolescents and offers unique opportunities to support children with chronic illnesses. Despite this, little is known about how this population engages on social media. The current project aims to characterize how pediatric SOT recipients, and their families use social media to seek and share information and navigate mental health challenges across their transplant journeys. Multiple approaches were used in this study, including a qualitative analysis of publicly available posts and comments from the Reddit support group r/transplant and a social media use survey. Posts included in analysis had to be shared by self-disclosed pediatric SOT recipients or their family members. Mental health-related narratives were further described using a thematic analysis. The survey involved various response options and assessed for motivations for using social media, barriers to use, and unmet needs. A total of 357 posts and 5827 comments were included in analysis of social media posts. Users of r/transplant described the online space as a valued source of community. Differences in online engagement were observed between transplant recipients and their family members, as well as based on time post-transplant. Mental health-related narratives uncovered themes related to fears of organ rejection, survivor’s guilt, and social challenges, including body image concerns and identity formation. Survey results revealed preferences for the type and frequency of transplant-related social media engagement. Respondents shared concerns about the credibility, relevance, specificity, and privacy of online content. Pediatric SOT recipients and their families use social media to seek information, share lived experiences, and foster peer support. By understanding how this community uses social media, we can advocate for the improved quality and availability of mental health resources both online and offline.