Li Jenny Xiaoyu, Yacyshyn Elaine
Department of Medicine, University of British Columbia, Vancouver, BC, Canada.
Division of Rheumatology, Department of Medicine, University of Alberta, Edmonton, AB, Canada.
JMIR Form Res. 2023 Dec 12;7:e49380. doi: 10.2196/49380.
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.
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.
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.
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.
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.
白塞病（BD）是一种具有复发发作和多系统临床特征的血管炎，会导致显著的发病率，并对患者生活产生影响。受白塞病影响的人经常参与关于他们疾病经历的讨论。线下支持小组的实际可达性有限，且相对缺乏匿名性；然而，在线社区越来越受欢迎。
本研究通过检查在热门匿名在线讨论平台Reddit的一个子版块上分享和讨论的内容，调查受白塞病影响的人的观点和经历。
检查了2021年3月9日至2022年3月12日期间发布的所有讨论线程，包括帖子和评论，这些内容来自“r/Behcets”子版块，截至2022年3月，该版块是一个拥有1100名成员的匿名在线社区。完成了扎根理论分析以识别主题和子主题，并从线程中提取了值得注意的引述。从每个帖子中提取的参数包括评论数量、净点赞数、类别和子类别。两名研究团队成员分别阅读帖子以识别初始代码和主题，以确保实现数据饱和。
确定了六个反复出现的主题：（1）通过共同经历找到联系和观点，（2）诊断过程的艰难，（3）分享或询问症状，（4）表达与白塞病经历相关的强烈情感，（5）白塞病对生活质量和人际关系的影响，以及（6）与白塞病相关的2019冠状病毒病和2019冠状病毒病疫苗接种。还确定并探讨了每个主题中的子主题。
这项新颖的研究对白塞病患者在Reddit这个匿名且易访问的在线社区中分享的观点和经历进行了定性探索。研究发现，受疾病影响的人试图通过共同的状况和经历建立联系并获得认可。通过检查“r/Behcets”中分享的内容，本研究突出了白塞病患者的需求，确定了他们在接受的线下支持方面存在的差距和改进领域。
