讲述分析和临床元综合 YouTube 讲故事的多发性硬化症男性生活
Nicola Grignoli1,2, Dimitrios Lampropoulos3, Carolin Demuth4
1Cantonal Sociopsychiatric Organisation, Mendrisio, Switzerland.
Journal of health psychology
|January 17, 2026
概括
患有多发性硬化症 (MS) 的男性使用YouTube分享他们的经历,经常描绘一个变革性的旅程. 虽然赋权,但这些叙述可能会冒着过度简化积极性的风险,并疏远一些个人.
科学领域:
- 数字健康数字健康
- 医学社会学 医学社会学
- 关于残疾人的研究.
背景情况:
- 多发性硬化症 (MS) 患者越来越多地使用YouTube等在线平台获取信息和支持.
- 患有MS的男性,一个代表性不足的群体,寻求在线空间来获得代理并重塑他们的身份.
- 关于MS男性如何在YouTube上构建和分享他们的经验的研究有限.
研究的目的:
- 为了分析在YouTube上分享的复发性缓解性多发性硬化症男性的叙述.
- 了解这些在线体验如何塑造关于疾病的身份和沟通.
主要方法:
- 来自MS协会,制药公司和独立影响者的YouTube视频的内容分析.
- 三种互补的叙事方法的应用.
- 通过关键临床元合成进行整合.
主要成果:
- 确定了身份转型的共同叙事轨迹,通常被表现为"前后"转变.
- 叙事经常传达希望和行动力,促进性.
- 推广过于积极的信息的潜在风险,可能会疏远面临更大的挑战的个人.
结论:
- 在YouTube上的在线MS叙述揭示了一个共同的身份转型弧.
- 这些叙述提供了赋权,但可能无意中创造了不切实际的期望或耻辱.
- 临床实践和干预措施需要针对多样化的多发性硬化体验,解决赋权和潜在疏远信息之间的平衡问题.
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