Community engagement, recruitment, and retention of minoritized participants in Alzheimer's disease and related dementia research: A systematic review of disparities
Araya Dimtsu Assfaw, Ganesh M. Babulal, Joyce Balls-Berry, Jessica Mozersky, Krista Moulder, John C. Morris
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引用次数: 0
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.
种族群体面临阿尔茨海默病和相关痴呆(ADRD)的最高风险,但在研究中仍未得到充分代表,加剧了健康差距。了解障碍和有效的招聘策略对于促进包容性至关重要。本研究的目的是综合有关在ADRD研究中吸引、招募和保留历史上少数群体的策略的证据。方法采用PubMed-MEDLINE、EMBASE、SCOPUS、WEB OF SCIENCE进行系统评价。研究集中在美国少数民族人口的ADRD研究招募和保留。结果33项研究确定了主要障碍,包括不信任、后勤挑战和低意识。有效的策略包括长期的社区参与、适合文化的教育、参与性方法和后勤支持。通过具有文化竞争力的战略、数字工具和社区伙伴关系来解决系统性障碍对于公平参与研究至关重要。研究人员和决策者必须优先考虑包容性方法,以加强代表性和改善ADRD结果。该研究考察了在ADRD中参与、招募和保留历史上代表性不足的种族群体的策略。成功的参与策略包括通过长期的社区参与建立信任,利用适合文化的教育材料,并与社区组织建立伙伴关系。该研究倡导提高文化能力,利用可访问的数字工具,促进社区伙伴关系,解决后勤障碍,并确保生物标志物研究中的多样化代表性。
期刊介绍:
Alzheimer's & Dementia is a peer-reviewed journal that aims to bridge knowledge gaps in dementia research by covering the entire spectrum, from basic science to clinical trials to social and behavioral investigations. It provides a platform for rapid communication of new findings and ideas, optimal translation of research into practical applications, increasing knowledge across diverse disciplines for early detection, diagnosis, and intervention, and identifying promising new research directions. In July 2008, Alzheimer's & Dementia was accepted for indexing by MEDLINE, recognizing its scientific merit and contribution to Alzheimer's research.