Myers, Peter S.

Abstract Background: Black or African Americans (AA) with Parkinson’s disease (PD) are underrepresented in both care and research and experience significant health disparities. The existing literature provides limited guidance on how to enhance the engagement of AA individuals in PD care and research, particularly from the perspectives of AA patients, care partners, and healthcare providers. This project aimed to (1) describe the use of Community Engagement (CE) Studios as a community-engaged research approach to inform culturally appropriate and inclusive research and (2) examine factors influencing AA engagement in PD-related activities. Methods: We conducted three CE Studios: one with AA with PD and care partners (N = 6), one with healthcare providers of AA with PD (N = 8), and one with AA with PD, care partners, and healthcare providers (N = 4). Results: The CE Studios informed the design (e.g., cultural appropriateness) and conduct (e.g., accessibility) of the planned PD project, as well as identifying stakeholders to engage with, improving alignment between research and the AA community. We highlighted the importance of multifaceted factors, including environmental (e.g., segregation), biological (e.g., symptoms), sociocultural (e.g., not being invited), and behavioral (e.g., empowerment) domains, which influence AA engagement. Conclusions: The CE Studios method is a feasible and useful approach for understanding the perspectives of AA in PD. It is possible to conduct an in-depth exploration of community perspectives by synthesizing comprehensive analyses and leveraging additional frameworks. These efforts include identifying barriers to engagement, recognizing locally relevant individuals, and refining PD-related care to enhance cultural appropriateness.

AbstractBackgroundAs the population ages in the United States, the prevalence of many diseases like Alzheimer disease, related dementias, and Parkinson disease disproportionately affect those already at greatest risk for premature morbidity and mortality. Aging research has an opportunity to engage and support patients, communities, and caregivers most impacted by these diseases. However, under‐resourced communities frequently lack representation in research, causing decreased generalizability of study results and health inequities among these communities.MethodsUsing a community and patient engaged framework, we conducted three community engagement studios (studios) with caregivers, patients, providers, researchers, and advocates from the St. Louis community. The studios provide community input and recommendations on project feasibility, design, and cultural appropriateness. Proposed projects were presented during each studio, followed by a facilitated discussion with a neutral facilitator. Themes were derived using traditional qualitative content analysis.ResultsStakeholders included under‐resourced community members, LGBTQIA+ participants, and those without/inadequate health insurance. The main themes included participant commitment to health, culturally appropriate research design, and incentives. In addition, participants desired collaboration between researchers and the community, including connecting with local Alzheimer’s Disease Associations, faith‐based groups, and philanthropic organizations.ConclusionOur community stakeholders provided feedback on how we could modify the research design to increase community involvement, enhance participant recruitment and commitment, and reach populations currently underrepresented in aging research, especially Alzheimer’s disease. The early inclusion of stakeholders in research design and implementation constitutes a preliminary step to building trust within under‐resourced communities and increasing the recruitment and retention of diverse populations.