Defining research engagement with African American participants in Alzheimer’s disease research studies: A qualitative study

Abstract

AbstractBackgroundDiverse recruitment of racial and ethnic groups affected by Alzheimer’s disease (AD) into research is an important public health priority. Black/African American older adults are more likely to develop AD compared to White older adults; however, representation of Black/African American individuals in AD research studies is estimated to be as low as 2.5 percent. Improved engagement with underrepresented communities is essential to increasing representation. Here, we define a theory of research engagement from a grounded theory approach in collaboration with Black/African American participants enrolled in two ongoing Alzheimer’s disease cohort studies at Vanderbilt University Medical Center.MethodVanderbilt Memory and Aging Project and Tennessee Alzheimer’s Project participants (n = 18, 68±10 years) who self‐identify as Black or African American were invited to participate in focus groups on research engagement. Focus groups were hosted in a community location. Pre‐discussion, participants completed the Measuring Trust in Medical Researchers scale. Each session lasting 90 minutes was moderated by a trained staff member, audio‐recorded, and subsequently transcribed. Data were analyzed following methodology described by Strauss and Corbin (1990, 1998) and modified by Charmaz (2006). Open coding to identify themes was independently conducted by 3 team members, and codes were refined using an iterative process.ResultThe overall mean score of trust in medical research was 43.9±7.4 (range = 36‐59) suggesting a moderate amount of trust. Participants expressed inclusion in the process and experiencing benefits from research as motivators for research engagement. Participants voiced a desire to better understand inclusion and exclusion criteria and an interest in hearing about the cohort and previously used methods of recruitment. Some members communicated the importance of a welcoming and passionate environment as a driver for engagement.ConclusionOur initial work defining research engagement identified key concepts important to our local community. Working together with the community to define research engagement helps immerse participants in the research process. These concepts are well established in the literature, and lessons learned from our focus groups will help define a theory of engagement with local context that can be used to evaluate our future activities.