The present study was designed to provide a detailed, qualitative examination of African American elders’ knowledge of brain donation and identify incentives and barriers to participation in a brain donation program. Findings suggest there are some important knowledge gaps. First, participants were generally unaware of the need to compare brains of demented and nondemented individuals with advance research, which supports our recent survey research in a larger cohort of African American elders (Jefferson et al., in press
). A unique knowledge gap that we discovered was that participants believed only a piece of brain tissue, and not the entire brain, is required for donation. This misconception may be related to our Center staff's prior description of the brain donation program as a “brain tissue donation” program. The third knowledge gap that we discovered was that participants reported a lack of awareness of how research can benefit African American communities, which likely contributes to disproportionately lower rates of brain donation among Black elders.
As expected, we also uncovered a number of barriers to participation in the Center's brain donation program, some of which are consistent with prior literature on organ donation or autopsy. In particular, nondonors and undecided participants reported that brain donation is too intrusive, and a request for donation feels demanding, especially after a lengthy (i.e., 4 h) registry study visit. Prior work supports this barrier, as African Americans often refuse autopsy due to negative feelings about the surgical procedure (Bonner et al., 2000
Another barrier to brain donation participation that we identified was racial mistrust due to historical human rights violations. This barrier is not surprising as prior work has reported that mistrust is a critical barrier to African American brain (Bonner et al., 2000
) and organ donation (Minniefield et al., 2001
). Participants reported that this barrier accounts in large part for African American underrepresentation in brain donation programs. Participants across all brain donation statuses (i.e., yes, will consider, no) cited the Tuskegee Syphilis Study, in particular, as contributing to African American mistrust of researchers. However, a unique finding of the current study is that some participants reported a desire to overcome mistrust as an “incentive” to participation in research and our brain donation program. In addition to historical episodes of discrimination, participants reported personal experiences with race and age discrimination in health care settings that have contributed to mistrust of research, including brain donation.
Religion and spirituality were also associated with African Americans’ donation decisions, including a desire to be buried intact and the belief that churches in Black communities do not support organ donation. This latter finding is supported by our recent survey data in which African Americans were more likely than White participants to incorrectly report that most religions do not support brain donation (Jefferson et al., in press
). Other prior research suggests that African American elders want to understand how their church views donation before making a decision, more so than their White peers (Connell, Avey, & Holmes, 1994
). Among a predominantly White sample, prior research has suggested that organ donation agreement is more likely when individuals believe their religious leader will support their decision (Skowronski, 1997
). Future studies should assess whether African Americans believe their religious institutions and leaders support brain donation to better understand how these factors relate to donation decisions.
Familial influence was the last major barrier reported to be associated with brain donation program participation. Participants described experiencing, or believing they would experience, resistance from their families if they committed to brain donation. Most participants, however, had not yet discussed the donation opportunity or their donation decision with their loved ones. Possible family objection is not a surprising barrier, as prior organ donation research suggests that individuals may be hesitant to speak with their families about their donation decisions (S. E. Morgan, 2004
) because they anticipate having to defend these decisions (Afifi et al., 2006
). Autopsy research among African Americans indicates that family member agreement is critical in the decision to donate (Bonner et al., 2000
), particularly because donation wishes often require family follow through. Therefore, supportive families may be an incentive to organ donation, as African Americans who have spoken with their families about donation are more likely to have also signed an organ donor card than those African Americans who have not spoken with their families (S. E. Morgan, 2004
The primary incentive for participating in our brain donation program was the possibility of family benefit. Specifically, family history of AD was cited as the primary reason for participating in both AD research in general and our brain donation program in particular. Donors and undecided participants expressed an interest in contributing to finding a cure for AD, especially after the personal experience of watching a loved one decline from the disease. Consistent with the autopsy literature (Bonner et al., 2000
; Connell et al., 1994
), participants stated also that brain donation may help prevent future family generations from being affected by AD. Previous research indicates that because of concerns related to the heritability of AD, individuals are particularly motivated to donate if it might benefit their children and grandchildren (Connell et al., 1994
). Finally, a unique incentive identified in the current study was that past exposure to medical research settings contributes to trust and willingness to donate one's brain.
Based on the aforementioned knowledge gaps and barriers and incentives to donation, our participants offered three recommendations to increasing African American representation in the Center's brain donation program. First, they advocated for an increase in racially and ethnically diverse staff with whom participants can relate and discuss the sensitive issue of donation. Second, because the opportunity to share views and experiences among peers might be more influential in donation decisions than one-on-one conversations initiated by study staff, they suggested peer discussion groups be held. Finally, they recommended promoting awareness both among Center participants and among community leaders (e.g., religious leaders) about ways in which brain donation research will directly benefit African American communities.
The present findings, taken together with our previous research (Jefferson et al., in press
), suggest that brain donation programs would benefit from the development and implementation of culturally relevant educational protocols for use with African American participants. We propose the inclusion of several key elements for such educational protocols as well as details on how our Center has begun implementing these elements into our own recruitment practices. First, information about procedural elements should be covered, including the fact that the entire brain is required for donation and the procedure will not delay or alter traditional funeral arrangements. To ensure that all participants receive consistent, accurate information, we have implemented a staff/faculty training session in which the neuropathologist directing our Center's Brain Bank covers brain donation procedures, including extraction details, tissue processing methods, and family feedback practices. Our second recommendation is that discussions include the fact that most religions support donation, and religious leaders should be incorporated in brain donation education programs whenever possible. Third, information on how brain donation specifically benefits Black communities should be covered. Locally, our brain donation discussion protocol has been augmented to include details about clinical research progress for treating hypertension among African Americans, who are at higher risk for this disease than their White counterparts (e.g., Schmidlin, Forman, Sebastian, & Morris, 2007
). Fourth, family members should be invited to participate in the brain donation conversation, something that organ donation programs have previously emphasized for donation decision making (Guadagnoli et al., 1999
). These conversations are not only critical to formulating an individual's initial donation decision but also vital to increasing family members’ follow-through on their loved one's donation decision at the time of death (Afifi et al., 2006
). Finally, protocols must address mistrust related to historical and current experiences of discrimination within research and health care settings. African American brain donation requests are known to be more successful when culturally relevant approaches are employed (Bonner et al., 2000
), including discussions of the Tuskegee Syphilis Study (Brandt, 1978
; Schuman, Olansky, Rivers, Smith, & Rambo, 1955
). Locally, we have formally presented transcript excerpts from the current study that reflect racial disparities and discrimination in medical settings along with cultural mistrust in an effort to familiarize our research team with barriers to brain donation among African American participants and highlight the need for culturally relevant discussions with participants.
Conversations related to racial mistrust, however, may be uncomfortable for staff who have not been trained in appropriate methods for approaching African American patients or participants about health care disparities, racial discrimination, and human rights violations. To address this barrier, we have hosted a cultural competence training aimed at increasing staff comfort facilitating race-related discussions and providing strategies to acknowledge and provide opportunities to discuss issues related to mistrust. Furthermore, our Center has hired additional racial and ethnic minority staff, per participants’ requests, and appointed an African American woman as the brain donation liaison for all African American participants. In conjunction with cultural competence trainings, staff may benefit from training related to discussing brain donation more generally, as donation is a potentially uncomfortable topic of discussion for study staff, participants, and their families (Siminoff, Burant, & Ibrahim, 2006
The present study is among the first to narrow the knowledge gap about brain donation program participation among African American elders by extending prior work in several ways (Bonner et al., 2000
; Jefferson et al., in press
). First, several aspects of the brain donation process need to be emphasized when recruiting individuals from any racial/ethnic group into a donation program, and those programs recruiting African American participants should provide information about how brain donation benefits the Black community. Second, racial mistrust and family objections, which are factors influencing organ donation and clinical research participation among African Americans (Afifi et al., 2006
; Minniefield et al., 2001
; S. E. Morgan, 2004
), function as barriers to brain donation. Third, consistent with the autopsy literature (Bonner et al., 1997
; Connell et al., 1994
), the potential to benefit younger family members through participation in brain donation research was cited as the primary incentive to participation.
Although this study has a number of strengths, several factors associated with the generalizability of our sample should be considered when interpreting our findings. First, due to the relatively small sample size and few focus groups held, findings may have limited generalizability to a larger population of African American older adults. Second, African American participants in our registry were purposefully and not randomly selected to participate in this study, so it is possible that extremely motivated participants, with unusually high levels of comfort in research settings, attended the focus groups. Third, our focus group participants, who are existing members of a large research registry, are likely savvier about the importance of research than the average prospective brain donor not enrolled in a clinical research program who may be more likely to have misconceptions and misinformation about brain donation. Also, all participants were free of dementia, so we did not gather information about ways to recruit African Americans with AD via family members or health care proxies (Bonner et al., 2000
There are several important areas of inquiry for future research. Additional studies are needed to clarify the role of religious and spiritual values in Black older adults’ decisions to donate or not donate one's brain. Researchers should explore the ways in which peer education may provide opportunities for African American elders to overcome barriers to brain donation program participation. Research related to the perceptions of and attitudes about donation among donor's family members should also be examined, particularly because loved ones are responsible for carrying out donor decisions postmortem. Finally, similar to Bonner and colleagues (2000)
, culturally relevant brain donation educational interventions should be created and evaluated for use with Black older adults and their families.