Community engagement, recruitment, and retention of minoritized participants in Alzheimer's disease and related dementia research: A systematic review of disparities

阿尔茨海默病及相关痴呆症研究中少数族裔参与者的社区参与、招募和留存:差异的系统性综述

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Abstract

INTRODUCTION: Ethnoracial groups face the highest risk for Alzheimer's disease and related dementias (ADRD) but remain underrepresented in research, exacerbating health disparities. Understanding barriers and effective recruitment strategies is critical for fostering inclusivity. The aim of this study was to synthesize evidence on strategies to engage, recruit, and retain historically minoritized groups in ADRD research. METHODS: A systematic review was conducted using PubMed-MEDLINE, EMBASE, SCOPUS, and WEB OF SCIENCE. Studies focusing on ADRD research recruitment and retention among minoritized populations in the United States were included. RESULTS: Thirty-three studies identified key barriers, including mistrust, logistical challenges, and low awareness. Effective strategies involved long-term community engagement, culturally tailored education, participatory methods, and logistical support. DISCUSSION: Addressing systemic barriers through culturally competent strategies, digital tools, and community partnerships is essential for equitable research participation. Researchers and policy-makers must prioritize inclusive approaches to enhance representation and improve ADRD outcomes. HIGHLIGHTS: The study examined strategies for engaging, recruiting, and retaining historically underrepresented ethnoracial groups in ADRD. Successful engagement strategies encompass building trust through long-term community involvement, utilizing culturally tailored educational materials, and forming partnerships with community-based organizations. The study advocates for enhancing cultural competency, leveraging accessible digital tools, fostering community partnerships, addressing logistical barriers, and ensuring diverse representation in biomarker research.

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