Abstract
ABSTRACT Purpose To report the availability and activity of online uveitis support groups. Methods An online search was conducted for support groups for uveitis. Member count and activity were recorded. Posts and comments were graded along five themes: emotional or personal story sharing, information seeking, offer of outside information, emotional support, and expressions of gratitude. Results An online search resulted in 32 support groups for uveitis. Across all groups, there was a median membership of 725 (IQR 1410.5). Of the 32 groups, five were active and accessible at the time of study. In these five groups, 337 posts and 1406 comments were made within the past year. The most prevalent theme in posts consisted of information seeking (84%) while the most prevalent theme in comments consisted of emotion or personal story sharing (65%). Conclusions Online uveitis support groups provide a unique space for emotional support, information sharing, and community building.Abbreviations: OIUF – Ocular Inflammation and Uveitis Foundation.
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