Motivation to join and supportive activity within online health communities among patients with persistent pain: A survey-based examination

Online Health Communities (OHCs) are key platforms for people seeking medical information and social support. Individuals with persistent pain often use these communities to better understand their condition, share experiences, and receive emotional or informational help, yet the psychological and social factors shaping participation remain underexplored. This study examined motivations for joining OHCs and levels of supportive activity, focusing on pain catastrophizing, offline social support, emotional attitudes towards pain, and unpredictability schemas. A survey was completed by 253 female members from four disease-specific OHCs (spinal hernia, endometriosis, migraine, autoimmune diseases). Measures assessed informational and emotional motivation, pain-related affective factors, perceived social support, and unpredictability schemas. Analyses included Wilcoxon tests, regression models, and latent profile analysis (LPA). Informational motivation was the primary reason for joining, with participants mainly using OHCs for knowledge exchange rather than emotional support. However, higher pain catastrophizing, lower perceived social support, and stronger unpredictability schemas were associated with greater emotional motivation. These factors predicted motivations more strongly than actual activity within the communities. The LPA identified two profiles: one characterized by high emotional motivation, elevated catastrophizing, and low social support, and another marked by lower emotional motivation, stronger support, and weaker unpredictability schemas. Overall, the findings highlight the dual function of OHCs. While most participants join mainly for information, women with persistent pain experiencing greater psychological distress and limited social networks rely more on OHCs for emotional support. Recognizing these patterns may help improve the design and facilitation of OHCs to better address diverse patient needs.