Attitudes towards memory research participation: Focus groups with elderly African Americans viewing a community‐created educational video

Abstract

AbstractBackgroundAlzheimer’s Disease (AD) disproportionately impacts African Americans (AA) but they are underrepresented in clinical research. A previous study (Sewell et al., AAIC 2019), found that the use of an educational video (Memory Research: Is it right for me?) created by the ADRC in collaboration with our primarily Latino Community Advisory Board was, in conjunction with Q&A sessions, effective at increasing interest in research among Latinos. The aim of the current pilot study was to engage community AA elders in focus groups to explore their feedback as regards clarity, relatability, and effectiveness of the video as a tool to engage them in conversations about research participation.MethodA Moderator’s Guide was created to ask the interviewees to evaluate the video re relatability, clarity and whether it impacted interest in participating in research. General questions were asked regarding knowledge of research and memory health. Two hour‐long focus groups were conducted with 14 participants who watched the video. An ADRC faculty member used the Moderator’s Guide to prompt responses while an observer took notes.ResultsMean age 72; 93% female; 93% AA; 7% Latino; 86% > high school graduates, 14% < 6th grade. Groups were transcribed, and data was coded to extrapolate themes using Grounded Theory techniques. One theme pertaining to attitudes toward research participation was fear (43% of participants) and included concerns that there would be side effects from medications or overly personal questions; the second theme was the video increased curiosity but a need for more information (e.g. requests for more details, and for specifics of how research is conducted) (62%). Participants also stated that the video clarified their understanding and decreased fear of research participation. As regards relatability, one member noted that the video should have included men and African Americans.ConclusionThe video was well‐received in primarily AA focus groups. Themes included both fear of research but also curiosity and a desire to know more. Given these encouraging results, a quantitative research study with a larger sample further exploring these themes and looking at the effectiveness of this recruitment strategy in increasing research participation is warranted.