Brain Donation For Research Research Articles

The Health Equity Through Aging Research And Discussion (HEARD) Study: A Proposed Two-Phase Sequential Mixed-Methods Research Design To Understand Barriers And Facilitators Of Brain Donation Among Diverse Older Adults

ABSTRACT Brain donation in studies on aging remains a critical pathway to discovering and improving preventive measures and treatments for Alzheimer’s dementia and related disorders. Brain donation for research is almost exclusively obtained from non-Latinx Whites of higher socioeconomic status in the United States. Despite persistent efforts, it has been difficult to obtain consent for brain donation among diverse participants. Hence, our understanding of Alzheimer’s dementia and related disorders remains incomplete. The purpose of this methodological paper was to propose and outline a two-phase sequential mixed-methods research study design to identify barriers and facilitators of brain donation among diverse older adults. The first phase will consist of qualitative focus groups using a three (participant minority status: African American, Latinx, or White of lower income) by two (participant brain donation decision: consented or declined) design. The second phase will include statistical analyses of quantitative measures of existing data representing categories of variables that may be associated with decision making regarding brain donation. Next steps must include conducting qualitative focus groups and subsequent data analyses, resulting in overarching themes. Afterward, qualitative themes will be operationalized using quantitative variables for statistical analyses. This proposed study design can provide the foundation for developing and implementing effective and culturally competent survey instruments, educational tools, and intervention strategies in an effort to facilitate brain donation among diverse older adults

"My Parent's Body Is Sacred": Perspectives From Adult Latino Children About Brain Donation for Alzheimer Disease Research.

Brain donation is a critical part of advancing research addressing Alzheimer disease and related dementias (ADRD). Studies on ADRD with an option for brain donation are reliant on family members to fulfill the research participant's plan for brain donation. Thus, family members play a pivotal role in increasing brain donation rates, particularly among under-represented groups. This study examines knowledge, attitudes, and beliefs about brain donation for research among Latinos. Latino men (N=4) and Latina women (N=11) 18 years of age or older with a parental figure age 65 years and over were invited to participate in a focus group. Data analyses revealed 3 themes. Two themes focused on factors influencing a family's willingness to support brain donation: (a) social and cultural contexts, and (b) lack of knowledge and information about the brain donation process. The last theme provided recommendations for engaging older Latino adults in ADRD research and brain donation. Results suggest being inclusive of family members during all stages of the research process, from recruitment to dissemination. In addition, addressing information gaps among Latinos about the process and benefits of brain donation may help mitigate mistrust and misperceptions and increase participation rates in brain donation.

MY PARENT’S BODY IS SACRED: LATINO PERSPECTIVES ON BRAIN DONATION FOR ALZHEIMER’S DISEASE RESEARCH

Brain donation is a critical part of advancing research addressing Alzheimer’s disease and related dementias (ADRD). Latinos are at a higher risk of developing ADRD compared to non-Latino Whites. However, there is limited knowledge regarding causes and mechanisms related to ADRD health disparities among Latinos partially due to lower research participation and brain donation rates. Family members play a pivotal role in increasing brain donation rates, particularly, among underrepresented groups. In this study, we examine the perceptions of brain donation among adult children of older Latinos. We invited Latino men and women (N=15) with a parental-figure who was 65 years and over to participate in one of three focus groups. During the focus groups, participants discussed the meaning of brain donation for research, reasons to donate or not, and their reactions to the possibility of their parental-figure being a brain donor. All focus groups were audio-recorded and transcribed with transcripts used for data analysis. We used a Grounded Theory Approach to analyze focus group data. Results yielded three themes: (1) social and cultural factors influencing a family’s willingness to support organ donation; (2) lack of knowledge about the brain donation process; and (3) recommendations for engaging more Latinos in ADRD research and brain donation. Findings provide insight into how family participation may facilitate increased brain donation rates in ADRD studies among older Latinos. A main recommendation for researchers is to adopt a family-centered approach throughout the research process with a focus on addressing information gaps - from recruitment to dissemination.

Attitudes of Asian Parkinson patients towards brain donation.

Histopathological examination of brain tissue is required for better understanding of neurodegenerative conditions such as Parkinson's disease and related disorders. However, patient willingness remains the greatest hurdle hampering participation in brain donation for research. While there is extensive research being conducted on the subject in West, to the best of our knowledge, there are no studies done in this regard in Asia. This cross-sectional survey was conducted on 105 Parkinson's disease patients to assess their knowledge, beliefs and attitude towards brain donation in an Asian population. The majority of the participants (78%) acknowledged the importance of donation of brain for research, and 70% believed that their donated brain samples would be handled professionally. Fifty percent participants were willing to consider donating their brain for research. Motivating factors for brain donation included altruism (87%) and contribution to advance medical knowledge (80%). Common reasons for unwillingness towards brain donation were stress for family (30%), disfigurement of body (25%), and having a conservative mindset (23%). About one-third of the participants preferred to be approached for brain donation after their first clinic visit. Most patients preferred either their treating neurologists (66%) or research staff (18%) to discuss brain donation with. Participation for brain donation may be increased further with greater patient and public education to overcome misconceptions and change mindsets.

P3‐104: The Brains for Dementia Research cohort: Demographics of people agreeing to regular assessment and brain donation for research

P3‐104: The Brains for Dementia Research cohort: Demographics of people agreeing to regular assessment and brain donation for research

Banking on brains: Insights of brain donor relatives and friends from an experiential perspective

Brain donation is critical to understand the pathological causes of neurodegenerative diseases. Increasing levels of donation requires an understanding of those factors that both encourage and deter donation. At present, there are few studies of how people understand, feel and decide about brain donation for scientific research. This qualitative experiential study contributes to the growing literature on brain donation through its specific focus on how the donation process is experienced from the perspectives of family members and friends. Nineteen semi-structured interviews were analysed using a phenomenologically informed thematic analysis. Four themes were derived from the analysis, three of which are described in detail: Making the decision to donate; a personal perspective on the donation process; the significance of the brain; beliefs about brain donation. In particular, the thematic analysis highlights the variation of individual decision making and the emotions and reasons underpinning such decisions. Key conclusions include the importance of integrated practice amongst relevant healthcare professionals as well as the need for supportive and informed communication. Also, in light of the finding that the brain assumed no special significance for most participants, the value of the distinction between brain donation for research purposes and organ transplantation is questioned.

Brain donation for research: Who donates and why?

Understanding what influences people to donate or not donate body organs is critical for the future of transplant surgery and medical research. Are people involved with a brain donor program for research influenced by the same factors, and are they also donors for organ transplantation? Using web-based technology, people involved in an Australian brain donation program (for research) were asked to complete a questionnaire designed to elicit demographic information, motivational factors and information about involvement in organ transplantation programs. The response rate was 82%. The majority of people involved in the program are young, well-educated Australian females. Seventy-eight percent are involved in other organ and tissue donation programs. People involved in the ‘Using our Brains’ program are the same group as those who are organ and tissue donors. An improvement in the overall donation rate might be possible if the resources of the research and transplant organisations were combined.

Brain donation for research: Strong support in Australia

Permission by families for transplant donation has decreased in Australia. We do know that Australians are interested in donating organs. What has not been explored is how people feel about donating brain tissue for medical research. This study examines the verbal responses of the next of kin, on the day of autopsy of the deceased, to the question of brain donation for medical research. On the day of autopsy a telephone call was made to the next of kin. Families were asked to consider donating the brain tissue of the deceased to medical research. All responses were recorded. Fifty-eight per cent of families contacted by telephone gave permission for the brain donation. The main reasons given for donating the brain to research were wanting to help others, and the family knowing the deceased’s wishes. This is an excellent response from families and more encouraging than the literature would predict. Further education and awareness about brain donation is needed and may be achieved effectively by combining donation options with the Australian Organ Donor Register.