The Impact of Latino Values and Cultural Beliefs on Brain Donation: Results of a Pilot Study to Develop Culturally Appropriate Materials and Methods to Increase Rates of Brain Donation in this Under-Studied Patient Group

Bilbrey, Ann Choryan; Humber, Marika Blair; Plowey, Edward D.; Garcia, Iliana; Chennapragada, Lakshmi; Desai, Kanchi; Rosen, Allyson; Askari, Nusha; Gallagher‐Thompson, Dolores

doi:10.1080/07317115.2017.1373178

Cited by 26 publications

(30 citation statements)

References 20 publications

(17 reference statements)

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“…Bilbrey et al (2018) assert that health literacy—the skills to access, read, process, understand, and communicate health related information—regarding brain donation can impact people’s decisions concerning brain donation. Although the health literacy of potential donors and their family members was not measured in any of the 14 included studies, participant knowledge about brain donation clearly varied from low to high.…”

Section: Resultsmentioning

confidence: 99%

“…In the case of potential brain donors with healthy brain, Harris et al (2013) explain that their participants understood “the valuable contribution the donated ‘normal’ tissue could make to the understanding of the pathological process” that underlie neurodegenerative disease (Harris et al 2013, p. 1101). In contrast, five studies reported that prior to participation in their study participants had little knowledge about brain donation for research (Bilbrey et al 2018; Boise et al 2017; Harris et al 2013; Jefferson et al 2013; Stevens 1998). This finding is confirmed by broader literature: Garrick et al (2006) write, “brain donation is a less familiar process to most of the population and is probably a more difficult personal decision that requires deliberation and consultation with loved ones” (p. 527).…”

Section: Resultsmentioning

confidence: 99%

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Why people donate their brain to science: a systematic review

2019

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The acquisition of brain tissue for research purposes is an important endeavour in research on ageing, pathological diagnosis, and the advancement of treatment of neurological or neurodegenerative diseases. While some tissue samples can be obtained from a living patient, the procurement of a whole brain requires the donation from people after their death. In order to promote positive attitudes towards brain donation, it is essential to understand why people do or do not donate their brain to medical research. In 2018 we undertook a systematic review of the international literature concerning people’s attitudes, motivations, and feelings about brain donation. Five electronic databases were searched: Scopus, PsycINFO, Embase, Medline, and Google Scholar. Search terms included: (“brain donor*” OR “brain donation” OR “brain banking” OR “banking on brain”) AND (attitude* OR motivation* OR decision*”) AND (LIMIT-TO “human”) AND (LIMIT-TO (LANGUAGE, “English”)). Articles were analysed using the Framework for Assessing Qualitative Evaluations and a meta-ethnographic approach. Fourteen articles were included for review. The findings suggest four universal factors informing a person’s decision to donate their brain: (1) contextual knowledge, (2) conceptual understandings, (3) family/friends matter, and (4) personal experience, time and process. The findings also indicate that the way healthcare professionals present themselves can influence people’s feelings and attitudes towards brain donation. Healthcare and research professionals who are involved in brain donation processes must be mindful of the complex and multiple factors that influence donation outcomes. Effective and sensitive communication with potential donors and their family/friends is paramount.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Why people donate their brain to science: a systematic review

2019

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“…Previous studies on brain donation among diverse older adults have largely focused on the identification of barriers to brain donation agreement, not barriers to completed brain autopsies once agreement has been obtained. [6][7][8][9][10]17,18 Potential participant-identified impediments to completed brain autopsies can provide insight into postmortem challenges and can allow for the development and implementation of possible ways to address these perceived impediments to completed brain autopsies beforehand. Older African Americans indicated that a lack of family buy-in at the level of brain donation decision making may impede subsequent completed brain autopsies.…”

Section: Discussionmentioning

confidence: 99%

“…Given the well-documented salient role of family among diverse older adults, family members and other factors may serve as potential impediments to completed brain autopsies for these populations who have agreed to brain donation. 6,8,[17][18][19] To our knowledge, prior studies have not examined possible challenges to subsequent completed brain autopsies among diverse older adults who have agreed to brain donation. The purpose of this article, reporting on research using a qualitative focus group methodology, is to identify perceived impediments to completed brain autopsies among diverse older adults who participate in longitudinal studies on aging and have agreed to brain donation.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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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

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“…Notably, a key feature of aging and ADRD research includes the requirement or option of organ donation upon death for a more complete understanding of ADRD, from etiology to potential prevention and treatment. Brain autopsies and resultant examinations of brain tissue from decedents of diverse ethnic and racial backgrounds are essential for generalizability, for representation, and for improvement of ADRD treatment and care for all individuals affected by the disease [32]. Few studies with older Latinxs request organ donation from study participants upon death, and despite per-sistent efforts to increase the participation of older Latinxs in ADRD research, the amount of available brain tissue from Latinxs is limited [33].…”

Section: Introductionmentioning

confidence: 99%

Representation of Older Latinxs in Cohort Studies at the Rush Alzheimer’s Disease Center

et al. 2020

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The Rush Alzheimer’s Disease Center (RADC) conducts 5 harmonized prospective clinical-pathologic cohort studies of aging – with 1 study, the Latino Core, focused exclusively on Latinxs, 2 studies consisting of mostly non-Latinx whites, and 2 studies of mostly non-Latinx blacks. This paper contextualizes the Latino Core within the other 4 harmonized RADC cohort studies. The overall aim of the paper is to provide information from the RADC, so that researchers can learn from our participants and procedures to better advance the science of Alzheimer’s disease and related dementias in Latinxs. We describe an annual clinical evaluation that assesses risk factors for Alzheimer’s dementia among older adults without known dementia at enrollment. As all RADC cohort studies offer brain donation as a part of research participation, we discuss our approach to brain donation and subsequent participant decision-making among older Latinxs. We also summarize baseline characteristics of older Latinxs across the 5 RADC cohort studies in relation to the baseline characteristics of non-Latinx blacks and non-Latinx whites. Finally, we outline challenges and considerations as well as potential next steps in cognitive aging research with older Latinxs.

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The Impact of Latino Values and Cultural Beliefs on Brain Donation: Results of a Pilot Study to Develop Culturally Appropriate Materials and Methods to Increase Rates of Brain Donation in this Under-Studied Patient Group

Abstract: Brain tissue is needed to further knowledge about underlying biological mechanism of neurodegenerative diseases, however it is a sensitive topic. Materials assist with family discussion and facilitate the family's follow-through with BD.

Cited by 26 publications

References 20 publications

Why people donate their brain to science: a systematic review

Why people donate their brain to science: a systematic review

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

Representation of Older Latinxs in Cohort Studies at the Rush Alzheimer’s Disease Center

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