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让有痴呆症亲身经历的人参与研究会议和活动:多视角见解

Engaging people with lived experience of dementia in research meetings and events: insights from multiple perspectives.

作者信息

Snowball Ellen, Aiken Christine, Norman Myrna, Hykaway Wayne, Dempster Zoe, Itzhak Inbal, McLellan Emily, McGilton Katherine S, Bethell Jennifer

机构信息

Knowledge, Innovation, Talent, Everywhere (KITE) Research Institute, Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada.

Engagement of People with Lived Experience of Dementia Program/Advisory Group, Canadian Consortium on Neurodegeneration in Aging, Montreal, QC, Canada.

出版信息

Front Dement. 2024 Jul 5;3:1421737. doi: 10.3389/frdem.2024.1421737. eCollection 2024.

Abstract

This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience.

摘要

这篇观点文章从有实际生活经验者、研究人员、受训人员、听众及其他人员的视角,描述了让有痴呆症实际生活经验的人参与研究会议和活动的经历。我们概述了不同活动中的参与实例,并介绍了一个由有实际生活经验者发起的视频项目,该项目传达了关于在加拿大衰老神经退行性变协会(CCNA)年度合作伙伴论坛和科学日成为不可或缺的合作者的不同观点。我们还报告了来自听众的评估数据,并提出了一系列促进这种参与的提示和策略,包括支持有实际生活经验者的实际考虑因素。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0be8/11285645/6227be42acb8/frdem-03-1421737-g0001.jpg

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