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

Acknowledgments

We thank the participants and staff of The Health Equity through Aging Research and Discussion (HEARD) Study and all cohort studies at the Rush Alzheimer’s Disease Center.

Disclosure Statement

The authors have no conflicts of interest to declare.

Author Contributions

CMG, RCS, DAB, and LLB contributed conception and design of the research study; CMG and LLB drafted the work; CMG, RCS, DAB, RSW, and LLB revised the work critically for important intellectual content; CMG and LLB provided approval for publication of the content; CMG and LLB agree to be accountable for all aspects of the work.

Statement of Ethics

All procedures have been approved by a Rush University Medical Center Institutional Review Board. All participants will provide written informed consent for HEARD study participation.

Additional information

Funding

This work was supported by National Institutes of Health [diversity supplement to grant number P30AG10161-S] to CMG, [grant numbers P30AG10161 and R01AG17917] to DAB, and [grant number RF1AG022018] to LLB. Funders did not play a role in study design, data collection and analysis, decision to publish, or preparation of the manuscript; National Institute on Aging [P30AG10161-S];National Institute on Aging [RF1AG022018]; National Institute on Aging [R01AG17917]; National Institute on Aging [P30AG10161].