Mechanisms by which culturally‐informed narratives may promote ADRD research enrollment among African American adults

Abstract

AbstractBackgroundInsufficient racial and ethnic diversity is a pervasive challenge in clinical research on Alzheimer’s disease (AD). The Recruitment Innovations for Diversity Enhancement (RIDE) in AD research study is grounded in the premise that culturally informed narratives of research participation can inspire other individuals from a given culture‐sharing group (in this case, African Americans) to consider enrolling in research. RIDE involved developing and disseminating narrative materials to share the research participation experiences of African American adults who are enrolled in AD research with those who are not. The current analysis aims to examine factors associated with interest in AD research following exposure to RIDE narrative campaign materials.MethodA community‐based sample of 500 individuals, primarily in mid to late life, identifying as Black or African American adults were invited to view a RIDE study video (∼2 minute story of AD research participation) online and complete a survey of perceptions about research and researchers, AD risk, and likelihood of enrolling in AD research. Logistic regression models were used to identify predictors of self‐reported likelihood of participating in AD research and potential mediators were tested to examine the causal pathway between predictors and likelihood of enrollment.ResultMost (n = 376; 72%) participants reported interest in being contacted to learn more about local AD research opportunities. After controlling for demographic variables and perceived AD risk, prior experience with clinical research and trust in medical researchers emerged as independent predictors of likelihood of enrolling in AD research. Mediation analysis revealed that perceived burdens of AD research mediated 40.5% of the effect of prior research experience and 25.3% of the effect of trust on likelihood of enrollment (P<0.05). Perceived benefits of AD research also played a mediating role, accounting for 35.3% of the effect of trust on likelihood of enrollment (P = 0.006).ConclusionThis study is a first step to understand the mechanisms by which narrative may function to enhance diversity in AD research. Findings suggest that participant narratives should address experiences that speak to the burdens and potential benefits of AD research participation as these factors may influence decisions leading to subsequent research enrollment.