ABSTRACT
Objectives: African Americans have a significantly higher risk than Whites for developing Alzheimer's disease (AD), but show lower participation in AD clinical trials. Studies of African Americans' involvement in clinical research have identified fear and mistrust of research as barriers to participation. Historical occurrences of unethical research practices are often cited as the source of these attitudes, but underlying factors such as African Americans' experiences of racism and discrimination remain unexplored. The goal of this study was to examine the roles of race and culture in the attitudes and beliefs of African Americans about participating in clinical research.Design: Five focus groups were conducted with 44 African American men and women (aged 50 and over) in a western U.S. state. Participants were asked scripted questions regarding their knowledge and beliefs about AD and their feelings about participating in clinical research. A taxonomy was created to organize results based on participant responses.Results: Four major thematic clusters emerged that influence African Americans beliefs about and participation in clinical research: (a) experiences of unequal treatment and racism, (b) cultural trauma due to historical events and contemporary experiences, (c) racial identity and cultural norms, and (d) the importance of cultural competency and racial congruence in recruitment and research studies.Conclusions: Understanding, acknowledging, and addressing the factors that underlie mistrust and fear of research is important to build trust and to develop culturally appropriate outreach, education, and recruitment strategies that will increase African Americans' participation in clinical research.
Subject(s)
Alzheimer Disease , Black or African American , Aged , Female , Focus Groups , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , White PeopleABSTRACT
OBJECTIVES: To test a culturally tailored intervention to improve Alzheimer's disease (AD) literacy among African Americans. DESIGN: A 3-arm randomized comparative effectiveness trial. SETTING: Community sites in Los Angeles, CA. PARTICIPANTS: 193 African American community-dwelling adults, ages 45 to 95 years old. INTERVENTION: All groups attended BrainWorks Live, a culturally tailored, 60-minute talk show and received standard printed educational materials on AD. From there: a) the BrainWorks Live group received no further contact until the post-test; b) one intervention group received a 1-month, culturally tailored, unidirectional, daily text-message program; and c) a second intervention group received daily text messages based on the printed educational materials that the general public would receive. AD literacy was measured at baseline and one month post intervention. MEASUREMENTS: Alzheimer's disease literacy and demographic and health covariates. RESULTS: At one month, participants who received culturally tailored text messages had the highest increase in AD literacy levels, followed by those in the BrainWorks Live arm. Participants who received general text messages had a lower overall increase in AD literacy levels compared to the other arms, but had higher mean AD literacy levels than the BrainWorks Live arm. There was a significantly greater increase in AD literacy levels among participants who received culturally tailored text messages compared with those who attended BrainWorks Live only. There were no other statistically significant differences between arms. CONCLUSIONS: AD literacy among African Americans can be improved after only one month through culturally competent, economically feasible educational formats.
