检查BRCA幸存者的社交媒体内容创作作为一种自我和社区护理形式:定性访谈研究
Mariah L Wellman1, Camilla M Owens2, Avery E Holton2
1Advertising & Public Relations, College of Communication Arts and Sciences, Michigan State University, East Lansing, United States.
Journal of medical Internet research
|March 7, 2025
概括
幸存者分享个人社交媒体内容,以控制他们的叙述和支持他们的社区. 这种方法提供了一种控制感,并有助于避免对BRCA突变体验的刻板印象.
科学领域:
- 遗传学 是一个遗传学.
- 社会媒体研究 社交媒体研究
- 卫生沟通健康沟通
背景情况:
- 遗传性乳腺和卵巢癌的基因检测是常见的.
- 许多医疗服务提供者缺乏全面的知识来支持接受基因测试或诊断后的患者.
- BRCA"幸存者" (那些对BRCA突变呈阳性测试的人) 使用社交媒体进行教育和社区建设.
研究的目的:
- 为了调查为什么BRCA幸存者在个人社交媒体账户上分享内容.
- 了解这种在线共享如何使更广泛的BRCA社区受益.
主要方法:
- 进行了16次半结构面试,这些人在社交媒体上发布了他们对BRCA诊断和治疗的信息.
- 采访被记录,转录,并使用诱导技术和反射主题分析进行分析.
主要成果:
- 幸存者更喜欢在线控制自己的医疗叙述.
- 分享个人经验提供了控制感,并允许设置边界.
- 幸存者旨在通过分享个人旅程来为BRCA社区服务,防止刻板印象.
结论:
- 进一步的研究应该探索BRCA预防沟通策略,特别是考虑到提供者的知识差距.
- 未来的研究应该检查BRCA患者的内容创作,包括种族和民族少数群体.
- 社交媒体平台内容调节政策对用户共享的影响需要调查.
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