探索那些生活在皮肤T细胞淋巴瘤的人的在线讨论:一种定性研究
Jenny Jung Sun Park1, Michi Shinohara2
1University of Washington School of Medicine, Seattle, WA, USA. jjspark7@gmail.com.
概括
针对皮肤T细胞淋巴瘤 (CTCL) 患者的在线支持小组专注于分享经验和克服治疗不确定性. 负面情绪占主导地位,突出了针对CTCL患者进行有针对性的教育干预的需要.
科学领域:
- 皮肤病学 皮肤病学
- 在瘤学瘤学.
- 社交媒体研究 社交媒体研究
背景情况:
- 皮肤T细胞淋巴瘤 (CTCL) 显著影响患者的生活质量和情绪健康.
- 社交媒体对CTCL患者的支持的利用和影响仍未得到充分研究.
研究的目的:
- 调查CTCL患者在线支持小组中表达的主要主题和情绪.
- 分析社区内共享医疗建议和情感内容的性质.
主要方法:
- 在一年内对CTCL特定的Facebook组的帖子和评论进行了定性分析.
- 使用NVivo软件进行主题分析,包括编码不支持的医疗建议和情绪分析.
主要成果:
- 关键主题包括"寻找和分享经验" (29%) 和"应对不确定性" (25%),特别是在治疗方面.
- 60%的医疗建议没有得到支持,主要由个人事组成.
- 观察到主要是负面的情绪,特别是在个人经历和疾病进展方面.
结论:
- 该CTCL社交媒体组作为一个平台,分享治疗经验和讨论不确定性.
- 负面情绪的普遍性表明,它在患者的情绪释放中起着作用.
- 研究结果表明,有机会为CTCL患者开发有针对性的教育干预措施.
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