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取之于社区,用之于社区:在拉丁裔老年人的指导下推进针对拉丁裔社区痴呆症护理的研究。

For the Community, by the Community: Advancing Research for Latino Communities in Dementia Care Following the Guidance of Latino Older Adults.

作者信息

Mora Pinzon Maria, Fernandez de Cordova Susana, Flores Diaz Valentina, Rosales Maria Del Carmen, Argandoña Ramon, Bermudez Nilda, Caro Beatriz, Caro Tomas, Martinez Maria Cristina, Salazar Yolanda, Green-Harris Gina, Phelps Kat

机构信息

Department of Medicine, Division of Geriatrics and Gerontology, School of Medicine and Public Health, University of Wisconsin - Madison.

Wisconsin Alzheimer's Institute, School of Medicine and Public Health, University of Wisconsin - Madison.

出版信息

Prev Chronic Dis. 2025 May 22;22:E21. doi: 10.5888/pcd22.240381.

Abstract

We outline a practical approach to engaging Latino communities in dementia care research by establishing a community advisory board (CAB). Acknowledging the historical underrepresentation of Latinos in health research, we aimed to ensure that Latino perspectives and concerns were central to our research endeavors. As an initial step we adapted the Patient Advisor Toolkit 1: Orientation for Patient Advisory Committees (PAT-1) created by the Wisconsin Network for Research Support at the University of Wisconsin - Madison School of Nursing to the needs of Latino/a/e/x populations. We describe the CAB formation process, from initial outreach to community members and organizations to the recruitment, engagement, and retention of CAB members. CAB members provided guidance on the legibility and clarity of study materials and assisted with strategic planning for outreach initiatives related to healthy aging, brain health, and dementia risk reduction. Our enduring connections with CAB members and community partners have ensured that our research activities address community needs, provide benefits to the community, and inform our approach to connecting with Latinos in a culturally appropriate way. To foster successful CAB engagement and retention, we recommend 1) building trust with partners, 2) establishing clear expectations, 3) ensuring inclusive communication formats, 4) maintaining open communication, 5) offering honoraria and recognition, 6) affirming CAB members' contributions, 7) understanding power dynamics between the academic institution and the community, and 8) ensuring adequate staff and programmatic support. This approach fosters trust-based relationships and meaningful engagement that advances health equity.

摘要

我们概述了一种通过建立社区咨询委员会(CAB)让拉丁裔社区参与痴呆症护理研究的实用方法。鉴于拉丁裔在健康研究中的历史代表性不足,我们旨在确保拉丁裔的观点和关切成为我们研究工作的核心。作为第一步,我们根据威斯康星大学麦迪逊分校护理学院的威斯康星研究支持网络创建的患者顾问工具包1:患者咨询委员会指南(PAT - 1),对拉丁裔/拉丁美洲裔/拉丁裔/x人群的需求进行了调整。我们描述了CAB的组建过程,从最初与社区成员和组织的接触到CAB成员的招募、参与和留用。CAB成员为研究材料的易读性和清晰度提供了指导,并协助制定了与健康老龄化、脑健康和降低痴呆风险相关的外展倡议的战略规划。我们与CAB成员和社区合作伙伴的持久联系确保了我们的研究活动满足社区需求,为社区带来益处,并为我们以文化适宜的方式与拉丁裔建立联系提供指导。为了促进CAB的成功参与和留用,我们建议:1)与合作伙伴建立信任;2)明确期望;3)确保沟通形式具有包容性;4)保持开放沟通;5)提供酬金和认可;6)肯定CAB成员的贡献;7)了解学术机构与社区之间的权力动态;8)确保有足够的人员和项目支持。这种方法促进了基于信任的关系和有意义的参与,推动了健康公平。

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