Intimate support or expansive insight? How social media community openness and size shape patient self-management

Brain injuries pose ongoing challenges that require robust self-management and support systems due to cognitive, emotional, and social impacts. Many patients now turn to social media for additional support, often relying on health communities where they can share experiences and seek advice. By offering emotional support and practical self-management strategies, these communities help patients improve their overall quality of life. This study conducts a comparative analysis of how the affordances of two types of social media health communities (small and closed vs. large and open) shape self-management strategies and interpersonal relationships for individuals with traumatic brain injuries. By analysing user engagement patterns and content shared within these communities, the study shows how different affordances contribute to different forms of support. The small, closed community fosters trust and privacy, encouraging deeper connections, tailored support, and a sense of safety. Conversely, the large, open community offers anonymity, a wider range of perspectives, and broader access to information, although interactions may lack personal depth. The study contributes to the literature on social media communities and health information technologies by deepening our understanding of how digital environments mediate support systems. The findings also provide insights for healthcare providers, patients’ families, and designers of social media communities.