TY  - JOUR
AU  - Li, Jenny Xiaoyu
AU  - Yacyshyn, Elaine
PY  - 2023
DA  - 2023/12/12
TI  - Thoughts and Experiences of Behçet Disease From Participants on a Reddit Subforum: Qualitative Online Community Analysis
JO  - JMIR Form Res
SP  - e49380
VL  - 7
KW  - Bechet disease
KW  - Behçet
KW  - online community
KW  - Reddit
KW  - vasculitis
KW  - quality of life
KW  - QoL
KW  - qualitative
KW  - community
KW  - morbidity
KW  - support
KW  - diagnosis
KW  - symptoms
KW  - vascular
KW  - vascular system
KW  - vascular disease
AB  - Background: Behçet disease (BD) is a type of vasculitis with relapsing episodes and multisystemic clinical features, associated with significant morbidity and impact on patients’ lives. People affected by BD often participate in discussions of their illness experiences. In-person support groups have limited physical accessibility and a relative lack of anonymity; however, online communities have become increasingly popular. Objective: This study investigates the perspectives and experiences of people affected by BD by examining the content shared and discussed on a subforum of the website Reddit—a popular online space for anonymous discussions. Methods: All discussion threads posted between March 9, 2021, and March 12, 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 included the 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 BD, (5) the impact of BD on quality of life and personal relationships, as well as (6) COVID-19 and the COVID-19 vaccination in relation to BD. Subthemes within each theme were also identified and explored. Conclusions: This novel study provides a qualitative exploration of the perspectives and experiences of people affected by BD, shared in the anonymous and accessible online community of Reddit. The study found that people impacted by an illness seek to connect and receive validation through shared conditions and experiences. By examining the content shared in r/Behcets, this study highlights the needs of people affected by BD, identifying gaps and areas for improvement in the in-person support they receive. 
SN  - 2561-326X
UR  - https://formative.jmir.org/2023/1/e49380
UR  - https://doi.org/10.2196/49380
UR  - http://www.ncbi.nlm.nih.gov/pubmed/38085563
DO  - 10.2196/49380
ID  - info:doi/10.2196/49380
ER  -