来自Reddit子论坛的参与者对贝塞特病的想法和经验:定性在线社区分析
Jenny Xiaoyu Li1, Elaine Yacyshyn2
1Department of Medicine, University of British Columbia, Vancouver, BC, Canada.
JMIR formative research
|December 12, 2023
概括
患有贝塞特病 (BD) 的人通过Reddit等在线社区找到联系和验证. 这项研究揭示了他们的经验,突出了改善支持的需求,并解决了当前护理的差距.
科学领域:
- 风湿病学和免疫学
- 数字健康与在线社区
- 定性研究方法 定性研究方法
背景情况:
- 贝切特病 (Behçet disease,简称BD) 是一种多系统性血管炎,导致显著的发病率并影响患者的生活质量.
- 在线社区为患者提供可访问和匿名的平台来讨论他们的健康经验,与有限的面对面支持小组形成鲜明对比.
研究的目的:
- 调查受贝塞特病影响的个人的生活经历和观点.
- 分析在线Reddit社区 (r/Behcets) 中共享的内容,以了解患者报告的主题和需求.
主要方法:
- 在一年的时间内 (2021年3月至2022年3月) 对r/Behcets subreddit的所有讨论线程和评论进行了理论分析.
- 识别和提取反复出现的主题,子主题和值得注意的引文,以确保数据和.
- 还收集了关于参与后 (评论,上调) 和分类的定量数据.
主要成果:
- 六个主要主题出现了:寻求联系,诊断挑战,症状分享,情绪表达,对生活和人际关系的影响以及COVID-19/疫苗接种问题.
- 患者积极分享经验,以寻找验证和联系,强调同行支持的重要性.
- 每个类别内的特定子主题提供了细微的洞察力,以了解患有贝希特病的患者旅程.
结论:
- 像Reddit这样的在线平台为患有贝塞特病的人提供了关键的同行支持和验证.
- 该研究确定了未满足的需求和潜在的领域,以加强对BD患者的面对面支持服务.
- 这种定性探索为患者的观点提供了有价值的见解,为未来的医疗保健策略提供了信息.
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