Information Seeking and Engagement on Social Media Among Pediatric Solid Organ Transplant Recipients and Their Families.

Abstract

Background: Social media is widely used among adolescents and offers unique opportunities to support children with chronic illnesses. However, little is known about how pediatric solid organ transplant (SOT) recipients and their families engage with these platforms. The objectives of this study are to characterize how this population seeks and shares information and engages with other pediatric SOT recipients and their families or general members on a transplant-specific online group.

Methods: We conducted a comprehensive search of the Reddit group, r/transplant. Publicly available posts and comments were included if they contained a self-identification as a pediatric SOT recipient (0-24 years old) or a family member. An inductive content analysis was performed to identify key topics. Self-disclosed demographic information was used to explore differences in discussion topics and engagement.

Results: A total of 357 posts and 5827 comments met inclusion criteria. Users most commonly discussed medical symptoms, medication, social support, healthcare experiences, and post-transplant recovery. Family members predominantly focused on medical issues, while recipients addressed a broader range of topics. Topics users engaged with varied by time since transplant: recipients 0-4 years post-transplant frequently discussed emotional and medical challenges, while those 5+ years post-transplant posted more about celebrating milestones.

Conclusions: Pediatric SOT recipients and their families use social media to seek and share information. Engagement patterns differ between recipients and their family members and across years post-transplant, suggesting the potential for tailored online interventions to support evolving needs across the transplant journey.