使用社区参与工作室,让患有痴呆症的人和他们的护理伙伴参与研究设计
Alejandra Martinez-Pereira1, Lisa A Mistler1,2, Susan Tarczewski1
1Center for Technology and Behavioral Health, Lebanon, NH, USA.
Journal of Alzheimer's disease : JAD
|March 10, 2026
概括
社区参与工作室 (CES) 成功地将痴呆症患者 (PLWD) 和护理合作伙伴参与到研究中. 这种参与改善了研究设计,解决了招聘,自主和沟通障碍.
科学领域:
- 老年学是指老年学的学科.
- 临床研究 临床研究
- 基于社区的参与式研究
背景情况:
- 患有痴呆症的人 (PLWD) 和他们的护理伙伴在参与研究方面遇到重大障碍.
- 社区参与工作室 (CES) 提供了一个结构化的方法,让研究人员与经历研究条件的个人合作,称为社区专家.
- 这种合作旨在完善研究设计,实施和传播策略.
研究的目的:
- 记录与痴呆症患者及其护理伙伴进行社区参与研究所获得的经验和经验.
- 探索CES在改善这一群体的研究包容性方面的可行性和影响.
主要方法:
- 在2022年7月至12月期间,新罕布什尔州 (英语) 和纽约州 (英语和西班牙语) 的PLWD和护理合作伙伴参与了三次CES.
- 采用了CES工具包的方法,包括邀请专家,促进采访指南的咨询会议,并分析参与者的反.
- 参与者包括12名社区成员:6名PLWD和6名护理合作伙伴.
主要成果:
- 确定的主要研究设计因素是招聘过程 (强调信任和沟通),参与者自主性和临床医生沟通.
- 来自西班牙语参与者的反强调了与英语群体相似的担忧,以及翻译在临床环境中的影响.
- CES提供了有价值的见解,导致研究研究设计的可操作变化.
结论:
- 社区参与工作室是一种可行且有效的方法,可以从痴呆症患者及其护理伙伴那里收集意见.
- CES促进了对提高研究相关性和影响的关键因素的识别.
- 参与PLWD和护理伙伴作为社区专家的战略可以导致更具包容性和有意义的研究.
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