Health concerns and attitudes towards research participation in a community of rural Black Americans

ABSTRACT

Objectives

Describe health concerns of Black Americans as they age and what influences their participation in aging and clinical research.

Methods

Fifty participants attended focus groups and completed questionnaires to identify barriers to research participation and attitudes toward dementia screening. Bivariate correlations explored associations between barriers to research participation and attitudes toward dementia screening.

Results

Cancer, hereditary conditions, vascular conditions, memory disorders, and psychological disorders were the greatest health concerns. Time demands, mistrust, lack of knowledge about potential research, and stigma were identified as barriers for research participation. Incentives, better understanding of how proposed research will benefit the community, lifestyle modification studies, active presence of principal researchers/clinicians, and community investment were identified as factors to improve participation. Questionnaires revealed mistrust and religious beliefs to be among the primary barriers. Attitudes toward dementia screening reflected perceived stigma, suffering, and subsequent loss of independence. Higher barriers to participation were associated with perceived stigma and loss of independence related to dementia screening.

Conclusions

Successfully recruiting Black Americans for aging and clinical research remains a challenge. This study identifies barriers to participation and offers suggestions for planning and recruitment.

KEYWORDS:

• Barriers and facilitators to research participation
• black americans
• recruitment strategies
• aging research
• dementia studies

Acknowledgments

The data presented in the current study were collected at the University of Florida. The authors would like to thank our research participants, along with Pilar Thangwaritorn, BA; Brynn Johnson, BA; and Kailey Langer, BA for their significant contribution to the study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data that support the findings of this study are available from the corresponding author, SAL, upon reasonable request.

Additional information

Funding

This work was supported by a grant from the Alzheimer’s Association (PI Levy: AACFD-17-505307) and the NIH pre-doctoral training grant (T32AG061892; Alzheimer’s AssociationAlzheimer’s Association [AACFD-17-505307; National Institutes of HealthNational Institutes of Health [T32AG061892]