Accepted for/Published in: JMIR Formative Research
Date Submitted: May 26, 2023
Date Accepted: Oct 23, 2023
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
A novel qualitative online community analysis: Thoughts and Experiences of Behcet's Disease from Participants on a Reddit Subforum
ABSTRACT
Background:
Behcet's disease is a type of vasculitis with multisystemic symptoms associated with significant morbidity and disease burden. However, it can be challenging for people to find offline communities for support. Online networks provide a valuable means for those impacted by the disease to share their perspectives and seek support in an anonymous way, without the constraints of location or travel. Reddit is one of the most popular and active online discussion platforms in the world, providing a unique and revealing lens into the experiences of people affected by Behcet's disease.
Objective:
This study investigates the perspectives and experiences of people affected by Behcet’s disease by examining the content shared and discussed on a subforum of the website Reddit.
Methods:
All discussion threads posted between March 9th, 2021 to March 12th, 2022, including posts and comments, were examined from the subforum r/Behcets, an anonymous online community of 1100 members as of March 2022. A Grounded Theory analysis was completed to identify themes and subthemes, and notable quotes were extracted from the threads. Parameters extracted from each post include Number of Comments, Net Upvotes, Category, and Subcategories. Two research team members read the posts separately to identify initial codes and themes to ensure data saturation was achieved.
Results:
Six recurring themes were identified: 1) Finding connectedness and perspectives through shared experiences, 2) Struggles of the diagnostic odyssey, 3) Sharing or inquiring about symptoms, 4) Expressing strong emotions relating to the experience of Behcet’s disease, 5) The impact of Behcet’s disease on quality of life and personal relationships, 6) COVID-19 and/or the COVID-19 vaccination in relation to Behcet’s disease. Subthemes within each theme were also identified and explored.
Conclusions:
The anonymous and accessible nature of the online Reddit community allows users to connect through shared experiences relating to their condition. By examining the content shared in r/Behcets, this study highlights the needs of people affected by Behcet’s disease, as well as gaps and areas for improvement in the offline support they receive.
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