探索如何在X (Twitter) 上讨论功能神经障碍:使用社交网络和内容分析进行混合方法研究
Caoimhe McLoughlin1, Jing-Yi Wang1,2, Florence Do1
1Centre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, United Kingdom.
Journal of medical Internet research
|October 17, 2025
概括
关于功能神经障碍 (FND) 的在线讨论往往以负面观点和错误信息为主,特别是来自讨论长期COVID和ME/CFS的用户. 这塑造了公众的看法,并影响了患者对这种误解的神经疾病的支持.
科学领域:
- 神经学 神经学
- 社交媒体分析 社交媒体分析
- 数字健康传播数字健康传播
背景情况:
- 功能神经障碍 (FND) 是一种常见但被污名化的神经疾病,具有残疾症状.
- 对FND的误解因与长期COVID等疾病相结合而加剧.
- 在线平台是患者信息的关键来源,影响他们的理解和互动.
研究的目的:
- 在社交媒体平台X (以前的Twitter) 上分析和描述围绕FND的言论.
- 了解FND在线社区中是如何被感知和讨论的.
- 识别与FND相关的社交媒体对话中具有影响力的用户和普遍的主题.
主要方法:
- 在两个月内从426名用户收集了1104条帖子,使用了与FND相关的搜索术语.
- 采用定量描述和社交网络分析来绘制用户影响和社区的地图.
- 进行内容分析以确定关键讨论主题和话题.
主要成果:
- 讨论FND以外的疾病 (例如,长期COVID,ME/CFS) 的用户比关注FND的用户多.
- 社交网络分析显示,不同的社区互动有限,外部社区对外影响更大.
- 很大一部分有影响力的用户和受欢迎的帖子表达了反FND情绪,其中的主题包括冲突,欺骗和虐待.
结论:
- 围绕FND的在线叙述在很大程度上是由对这种疾病漠视的用户塑造的,这会影响患者的支持.
- 这些发现凸显了个人寻求对FND的理解和帮助所面临的挑战.
- 该研究为分析围绕其他污名化的健康状况的在线话语提供了一个框架.
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