Mechanisms by Which Cultural-Centric Narrative Influences Interest in ADRD Research Among African American Adults

Abstract

Background and Objectives Insufficient ethnoracial diversity is a pervasive challenge in Alzheimer’s disease (AD) research. The Recruitment Innovations for Diversity Enhancement (RIDE) is grounded in the premise that culturally informed narratives of research participation can inspire individuals from a given culture-sharing group to consider research enrollment. This study examines factors associated with interest in AD research among Black or African American adults following exposure to RIDE narrative campaign materials. Research Design and Methods A community-based sample of 500 Black or African American adults viewed RIDE narrative materials online and completed a survey of perceptions about research, AD risk, and likelihood of enrolling in AD research. Logistic regression examined predictors and mediators of self-reported likelihood of participating in AD research. Results Most (72%) participants reported interest in being contacted for AD research opportunities. After controlling for key variables, prior experience with clinical research and trust in medical researchers emerged as independent predictors of likelihood of enrolling in AD research. Perceived burden of AD research partially mediated the effects of prior research experience and trust on likelihood of enrollment. Perceived benefits of AD research also played a mediating role, accounting for over one third of the effect of trust on likelihood of enrollment. Discussion and Implications This study advances the field’s understanding of how narrative may function to enhance diversity in AD research. Findings suggest that participant narratives should address experiences regarding the burdens and potential benefits of AD research participation as these factors may influence decisions leading to subsequent research enrollment.

Trial Participation in Neurodegenerative Diseases: Barriers and Facilitators

“…Articles were excluded if they focused solely on patients at risk of a neurodegenerative disease (n = 26), lacked an assessment of barriers and/or facilitators of trial participation (n = 24), were not classified as an original research article (n = 3), performed an analysis and did not provide descriptive statistics (n = 7), were unavailable in full text (n = 2), or solely concentrated on recruitment (n = 1). An example of an excluded study is the study by Linger et al, 28 who evaluated the effect of several recruitment strategies on the likelihood of trial participation. No studies were excluded on the basis of the CASP, as the overall score for each study was adequate (eAppendix 3).…”

COVID‐19 pandemic's relationship with enrollment at US Alzheimer's Disease Research Centers

“…The ADRC network should develop strategies to speed enrollment recovery for women and especially for the Black/African American and Hispanic groups. Prior work suggests a number of factors could increase recruitment, including some specifically focused on groups underrepresented in research, such as community outreach, tailored messaging, giving back to the community, peer recruiters, reducing participant burden, and partnering with health care providers 14,29‐31 . Specific approaches likely need to be tailored to the group and context, although this creates a tension between effective recruitment and creating differences between groups due to different recruitment sources and strategies.…”

“…Prior work suggests a number of factors could increase recruitment, including some specifically focused on groups underrepresented in research, such as community outreach, tailored messaging, giving back to the community, peer recruiters, reducing participant burden, and partnering with health care providers. 14 , 29 , 30 , 31 Specific approaches likely need to be tailored to the group and context, although this creates a tension between effective recruitment and creating differences between groups due to different recruitment sources and strategies. For example, it has previously been shown within the ADRCs that referral source is likelier to be non‐clinical for Black/African American participants and clinical for non‐Hispanic White participants, and that these differences bias statistical models of relationships being tested.…”