Abstract
To learn about African American older adults' knowledge and perceptions of brain donation, factors that relate to participating or not participating in a brain donation research program, and methods to increase African American brain donation commitment rates in the context of an Alzheimer's disease (AD) research program. African American older adults (n = 15) from the Boston University Alzheimer's Disease Core Center participant research registry enrolled in 1 of 2 focus groups of 90 min about brain donation. Seven participants were selected for a third follow-up focus group. Focus group transcripts were analyzed using consensual qualitative research methods, and 8 overarching themes emerged: (a) perceptions of and misconceptions about brain donation procedures, (b) racial minorities in medical research, (c) racial disparities and discrimination in medical settings, (d) influence of religion and spirituality, (e) family perceptions of and involvement in donation, (f) family history of disease and desire to find a cure, (g) prior exposure to medical and research settings, and (h) culturally sensitive approaches to brain donation. Culturally relevant educational protocols need to be created for use with African American older adults. These protocols should include information about brain donation procedures, rates of AD among Black elders, and potential benefits of donation to Black communities; inclusion of religious figures, family, and peers in donation education and decisions; and methods to address mistrust, including cultural competence trainings for staff.
Highlights
As a result of being in the United States for an extended period of time, African American]
Our own recent work suggests that African American elders may be less familiar with certain aspects of brain donation, as they are more likely than their White peers to believe that most religions do not support donation (Jefferson et al, in press)
Research examining barriers to clinical research participation and organ donation consent may elucidate why African Americans are underrepresented in brain donation programs
Summary
As a result of being in the United States for an extended period of time, African American]. Because dementia is associated with hereditary risk factors, an AD diagnosis provides important family health information for surviving loved ones Compared with their White counterparts, African Americans are underrepresented in brain donation programs (Bonner, Darkwa, & Gorelick, 2000; Jefferson et al, in press). Research examining barriers to clinical research participation and organ donation consent may elucidate why African Americans are underrepresented in brain donation programs Such participation barriers include general societal mistrust (Freimuth et al, 2001), mistrust in health care institutions and physicians (Boulware, Cooper, Ratner, LaVeist, & Powe, 2003; Freimuth et al, 2001; Minniefield et al, 2001), cultural mistrust (CorbieSmith et al, 2002; Terrell et al, 2004), need for family support (Robbins, 2001), lack of awareness about donation needs and benefits (Callendar & Miles, 2001; Glasgow & Bello, 2007; Park, 1998), and religious myths (Hall et al, 1991). To better understand reasons for underrepresentation of African Americans in brain donation research programs, the present study aimed to (a) assess African American older adults’ knowledge about and perceptions of brain donation, (b) explore factors related to participating or not participating in a brain donation program, and (c) determine methods to increase African American brain donation rates
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