评估疹性狼的TikTok用户与疾病相关的经历:定性和内容分析
Lindsey J Wanberg1, David R Pearson1,2
1University of Minnesota Medical School, Minneapolis, MN, United States.
JMIR infodemiology
|April 17, 2024
概括
社交媒体揭示了狼红血病 (LE) 患者与症状,治疗和"隐形疾病"的斗争. 了解这些经验对于医疗保健提供者提供更好的支持和验证至关重要.
科学领域:
- 自身免疫性疾病是一种自身免疫性疾病.
- 社交媒体分析
- 患者报告的结果.
背景情况:
- 红斑狼 (LE) 显著影响生活质量和日常功能.
- TikTok提供了一个独特的平台来研究代表性不足的非临床患者体验.
- 这是第一个探索TikTok上LE体验的定性研究.
研究的目的:
- 评估 TikTok 用户患有红性狼 (LE) 的疾病相关经验.
- 分析TikTok视频中的质量和内容数据.
- 了解患者对LE症状和治疗的看法.
主要方法:
- 使用#lupus标签对153个英语TikTok视频进行质量和内容分析.
- 通过标准化的感应编码开发代码库,以达到数据和.
- 使用NVivo软件进行主题分析,以识别用户体验中的关键主题.
主要成果:
- 粘膜皮肤症状 (皮疹,脱发) 和一般症状最常被编码.
- 有症状和粘膜皮肤症状的经验获得了最高的累计浏览量.
- 关键主题包括粘膜皮肤症状对心理健康的深刻影响,医疗保健的负面相互作用 (医疗气照),对治疗的不同看法,症状与日常生活的干扰以及由于"隐形疾病"而导致的隔离.
结论:
- 社交媒体为LE等慢性疾病提供了临床相关的见解.
- 解决粘膜皮肤症状至关重要,因为它们是主要的危险驱动因素.
- 对药理疗法的负面描述强调了关于安全性和有效性的讨论的必要性.
- 临床相互作用的验证至关重要,因为患者经历了"隐形疾病"和"医疗气体照明".
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