"At that moment, understanding the donation is crucial to make a decision": A qualitative study exploring the process of postmortem brain tissue donation after suicide

Background: The direct examination of postmortem brain tissue can provide valuable help in refining knowledge on the pathophysiology and genetics of neuropsychiatric disorders. Obtaining postmortem consent for the donation of brain tissue after death by suicide can be difficult, as families may be overwhelmed by a violent and unexpected death. Examining the process of brain donation can inform on how the request can best be conducted, examining the existing barriers and enhancing communication, to the benefit of proxy donors. Methods: This is a qualitative study, in which we employed in-depth interviews to investigate the donation process. Family members of decedents who were eligible for brain tissue donation were asked to consider the donation; irrespective of their decision, they were invited for an interview on the donation process at least 2 months after the suicide. Data collection and analyses were carried out according to a grounded theory framework, and collection, coding, and theorization occurred simultaneously. Findings: Forty-one people participated in this study, 32 family members who had consented to donation and 9 who refused it. Five key themes emerged from our data analysis: the context of the families of potential donors, the invitation to talk to the research team, the experience with the request protocol, the participants' assessment of the experience, and their participation in the study as an opportunity to heal. We arranged the main categories around 3 central stages of the experience described by participants: before the donation request, the request, and after the request. Conclusions: The participants indicated that a brain donation request that is respectful and tactful can be made without adding to the family distress brought on by suicide and is viewed in a highly positive lens in the months following the event. Having an adequate understanding of tissue donation for research was crucial for satisfactory decision-making. Meeting with the donation team was considered a chance to talk to mental health professionals about suicide. Pondering brain donation was seen as an opportunity to transform the meaning of the death and invest it with a modicum of solace for being able to contribute to research.

Attitudes About Brain Donation Among African American Research Participants

Alzheimer’s and related dementias (ADRD) disproportionately affect the African American community. Brain donation, a crucial part of translational research, is less common among African American research participants compared to White research participants at Alzheimer’s Disease Research Centers (ADRCs) across the US. Existing literature suggests three categories of contributory factors for African Americans: concerns and misconceptions about brain research and brain donation; religious beliefs; and the role of the family. Existing knowledge of community interventions is limited. We conducted seven focus groups, stratified by brain donation intent and cognitive status, to capture the perspectives of African American research participants. Qualitative content analysis reveal the following contributory themes: personal connection to memory loss or dementia; altruism; spirituality/religion; historical and current racism in health care and research; trauma and objectification; trust; representation; understanding the purpose and process of brain donation; and fluidity in decision-making. Future research will explore trauma-informed and culturally responsive interventions. Part of a symposium sponsored by the Alzheimer’s Disease Research Interest Group.

Perceived Impediments to Completed Brain Autopsies Among Diverse Older Adults Who Have Signed a Uniform Anatomical Gift Act for Brain Donation for Clinical Research

Background: A small number of older adults in the United States who agree to brain donation for clinical research belong to diverse racial, ethnic, and economic groups. Those who agree, however, are less likely to have completed brain autopsies compared with older non-Latino Whites of higher socioeconomic status. As such, our understanding of Alzheimer’s disease and related dementias remains limited in these underrepresented and understudied populations. Here, we examine perceived impediments to completed brain au­topsies among diverse older adults who have agreed to brain donation for clinical research.Methods: Participants (N=22) were older adults (mean age=77 years) who self-identified as African American (n=8), Latino (n=6), or White of lower income (n=8). All participants had previously agreed to brain donation via the Uniform Anatomi­cal Gift Act. Each participant took part in a one-time, semi-structured focus group. Data were analyzed using a Grounded Theory Approach with both Open Coding and Constant Comparative Coding.Results: Perceived impediments to com­pleted brain autopsies varied by group. Older African Americans and older Latinos expressed concern about a lack of follow-through by family members regarding their brain donation wishes. Older Whites of lower income indicated that their own un­certainty surrounding the processes of brain donation and brain autopsy might serve as an impediment.Discussion: Diverse older adults expressed different perceived impediments to hav­ing brain autopsies completed upon their death. Continuous education for diverse older adults and their family members re­garding brain donation for clinical research, including clear guidelines and processes, may facilitate completed brain autopsies among diverse older adults.Ethn Dis. 2020;30(Suppl 2):709-718; doi:10.18865/ed.30.S2.709