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A Thematic Analysis of Online Uveitis Support Groups
Haroon Adam Rasheed1, Yusuf Salman Rasheed2, Shafee Syed-Quadri3
1David Geffen School of Medicine at UCLA, Los Angeles, California, USA.
Ocular Immunology and Inflammation
|February 22, 2023
Summary
Online uveitis support groups offer vital community and information for patients. While many groups exist, only a few are active, with members frequently seeking information and sharing personal stories.
Area of Science:
- Ophthalmology
- Digital Health
- Patient Support
Background:
- Uveitis is a complex ocular condition requiring ongoing patient support.
- Online communities have emerged as a significant resource for patients with chronic diseases.
Purpose of the Study:
- To assess the availability and activity of online uveitis support groups.
- To analyze the content and engagement within these digital patient communities.
Main Methods:
- Conducted an online search to identify uveitis support groups.
- Recorded group membership and activity levels.
- Categorized posts and comments based on themes like information seeking and emotional support.
Main Results:
- Identified 32 online uveitis support groups with a median membership of 725.
- Found five active groups with 337 posts and 1406 comments in the past year.
- Information seeking dominated posts (84%), while personal story sharing was prevalent in comments (65%).
Conclusions:
- Online uveitis support groups serve as crucial platforms for emotional support and information exchange.
- These digital spaces foster community building among individuals affected by uveitis.
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