社交媒体上的罕见病叙述:内容分析
Hannah J Park1,2, Cassidy J Scott1,2, Hadley Stevens Smith3,4
1Division of Newborn Medicine, Boston Children's Hospital and Harvard Medical School, Boston, MA.
Genetics in medicine open
|March 21, 2025
概括
社交媒体视频为患有罕见疾病的个人的生活经验提供了宝贵的见解,促进了社区和通报基因组护理. 这些叙述强调了对罕见病患者及其家属的认识,支持和日常生活的挑战.
科学领域:
- 基因组医学是基因组医学.
- 社交媒体分析 社交媒体分析
- 罕见疾病 罕见疾病
背景情况:
- 社交媒体平台为患有罕见疾病的个人提供了表达方式.
- 视频叙述提供了对生活经验的独特见解.
- 了解这些经验可以为基因组护理的改进提供信息.
研究的目的:
- 在社交媒体上描述罕见疾病视频叙述的性质和内容.
- 分析这些在线表达的主题和特征.
- 探索社交媒体对罕见疾病社区的潜力.
主要方法:
- 对500个视频进行了内容分析,标记为#罕见疾病,#罕见疾病或#罕见疾病.
- 专题分析使用混合的演和诱导方法.
- 视频特征,叙述者和提到的罕见情况的文档.
主要成果:
- 六个主要主题出现了:意识,指导,亲密生活视角,医疗保健互动,响应和支持请求.
- 讲述者主要是家庭/护理人员 (50.2%) 或受影响的个人 (46.6%).
- 埃勒斯-丹洛斯综合征,桑菲利波综合征和麻醉症是189个提到的罕见疾病之一.
结论:
- 视频格式的社交媒体可以为那些受到罕见疾病影响的人建立社区.
- 这些叙述的洞察力增强了对日常生活中医疗经验的理解.
- 这种理解可以促进同情心,改善基因组医学实践.
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