A Thematic Analysis of Online Uveitis Support Groups

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.

KEYWORDS:

• Education
• social media
• support group
• uveitis

Disclosure statement

The authors have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/09273948.2023.2178937

Additional information

Funding

This work was supported by the National Eye Institute of the National Institutes of Health under award number K23EY032990 (E.T.). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. This work is also supported by an Unrestricted Grant from Research to Prevent Blindness, Inc. to the Department of Ophthalmology at UCLA.