确定支持多发性硬化症患者社区参与的集体努力
Bishan Yang1,2, Jennifer Sullivan3,4, Elysa Lanz4
1University of Washington, Seattle, USA.
OTJR : occupation, participation and health
|October 23, 2025
概括
系统层面的变化对于改善多发性硬化症 (MS) 患者的社区参与至关重要. 这项研究让MS社区参与,以确定可行的解决方案,以获得更好的支持和包容.
科学领域:
- 康复科学 康复科学 康复科学
- 社区健康 社区健康
- 关于残疾人的研究.
背景情况:
- 患有多发性硬化症 (PwMS) 的人面临社区参与的重大障碍.
- 目前的干预措施往往侧重于个别障碍,忽视系统性问题.
- 需要探索系统层面的变化,以加强PwMS的社区包容性.
研究的目的:
- 确定可操作的系统层面的变化,支持MS患者的社区参与.
- 让各种各样的MS社区成员参与寻找解决方案.
- 为专业人士和政策制定者提供有效的支持策略的信息.
主要方法:
- 采用了社区参与的研究方法.
- 在线社区参与会议 (CEM) 与多发性硬化社区成员进行.
- 一个社区咨询委员会指导了这个过程,包括规划,实施和传播.
主要成果:
- 21名参与者提出了四个关键领域的建议:获取信息,改善MS护理,环境可访问性和打击残疾人.
- 参与者确定了针对系统层面变革的具体可行的解决方案.
- 该研究表明,社区参与在确定实际建议方面取得了成功.
结论:
- 系统层面的变化对于促进MS患者社区参与至关重要.
- 社区参与的研究可以为政策和实践产生实际见解.
- 未来的努力应集中在实施识别的系统层面的变化,以支持PwMS.
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