Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults
Abstract Introduction The study examined Black and White prospective participants’ views of barriers to and facilitators of participation in Alzheimer's disease (AD) biomarker research. Methods In a mixed‐methods study, 399 community‐dwelling Black and White older adults (age ≥55) who had never...
| Main Authors: | , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2023-04-01
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| Series: | Alzheimer’s & Dementia: Translational Research & Clinical Interventions |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/trc2.12399 |
| _version_ | 1797774736947675136 |
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| author | Johanne Eliacin Angelina J. Polsinelli Francine Epperson Sujuan Gao Sarah Van Heiden Glenda Westmoreland Ralph Richards Mollie Richards Christopher Campbell Hugh Hendrie Shannon L. Risacher Andrew J. Saykin Sophia Wang |
| author_facet | Johanne Eliacin Angelina J. Polsinelli Francine Epperson Sujuan Gao Sarah Van Heiden Glenda Westmoreland Ralph Richards Mollie Richards Christopher Campbell Hugh Hendrie Shannon L. Risacher Andrew J. Saykin Sophia Wang |
| author_sort | Johanne Eliacin |
| collection | DOAJ |
| description | Abstract Introduction The study examined Black and White prospective participants’ views of barriers to and facilitators of participation in Alzheimer's disease (AD) biomarker research. Methods In a mixed‐methods study, 399 community‐dwelling Black and White older adults (age ≥55) who had never participated in AD research completed a survey about their perceptions of AD biomarker research. Individuals from lower socioeconomic and education backgrounds and Black men were over‐sampled to address perspectives of traditionally under‐represented groups. A subset of participants (n = 29) completed qualitative interviews. Results Most participants expressed interest in biomarker research (overall 69%). However, Black participants were comparatively more hesitant than White participants (28.9% vs 15.1%), were more concerned about study risks (28.9% vs 15.1%), and perceived multiple barriers to participating in brain scans. These results persisted even after adjusting for trust and perceived knowledge of AD. Information was a primary barrier (when absent) and incentive (when provided) for AD biomarker research participation. Black older adults desired more information about AD (eg, risk, prevention), general research processes, and specific biomarker procedures. They also desired return of results to make informed decisions about their health, research‐sponsored community awareness events, and for researchers to mitigate the burden placed on participants in research (eg, transportation, basic needs). Conclusion Our findings increase representativeness in the literature by focusing on individuals with no history of AD research experience and those from traditionally underrepresented groups in research. Results suggest that the research community needs to improve information sharing and raising awareness, increase their presence in the communities of underrepresented groups, reduce incidental costs, and provide valuable personal health information to participants to increase interest. Specific recommendations for improving recruitment are addressed. Future studies will assess the implementation of evidence‐based, socioculturally sensitive recruitment strategies to increase enrollment of Black older adults into AD biomarker studies. HIGHLIGHTS Individuals from under‐represented groups are interested in Alzheimer's disease (AD) biomarker research. After adjusting for trust and AD knowledge, Black participants were still more hesitant. Information is a barrier (when absent) to and incentive (when given) for biomarker studies. Reducing burden (e.g., transportation) is essential for recruiting Black older adults. |
| first_indexed | 2024-03-12T22:24:33Z |
| format | Article |
| id | doaj.art-492416b603ac422fb2aed81603cd8918 |
| institution | Directory Open Access Journal |
| issn | 2352-8737 |
| language | English |
| last_indexed | 2024-03-12T22:24:33Z |
| publishDate | 2023-04-01 |
| publisher | Wiley |
| record_format | Article |
| series | Alzheimer’s & Dementia: Translational Research & Clinical Interventions |
| spelling | doaj.art-492416b603ac422fb2aed81603cd89182023-07-22T06:46:06ZengWileyAlzheimer’s & Dementia: Translational Research & Clinical Interventions2352-87372023-04-0192n/an/a10.1002/trc2.12399Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adultsJohanne Eliacin0Angelina J. Polsinelli1Francine Epperson2Sujuan Gao3Sarah Van Heiden4Glenda Westmoreland5Ralph Richards6Mollie Richards7Christopher Campbell8Hugh Hendrie9Shannon L. Risacher10Andrew J. Saykin11Sophia Wang12Department of Internal General Medicine Indiana University School of Medicine Indianapolis Indiana USAIndiana Alzheimer's Disease Research Center Indianapolis Indiana USAIndiana Alzheimer's Disease Research Center Indianapolis Indiana USAIndiana Alzheimer's Disease Research Center Indianapolis Indiana USAIndiana Alzheimer's Disease Research Center Indianapolis Indiana USADepartment of Medicine Indiana University School of Medicine Indianapolis Indiana USAIndiana Alzheimer's Disease Research Center Indianapolis Indiana USAIndiana Alzheimer's Disease Research Center Indianapolis Indiana USAIndiana Alzheimer's Disease Research Center Indianapolis Indiana USAIndiana Alzheimer's Disease Research Center Indianapolis Indiana USAIndiana Alzheimer's Disease Research Center Indianapolis Indiana USAIndiana Alzheimer's Disease Research Center Indianapolis Indiana USAIndiana Alzheimer's Disease Research Center Indianapolis Indiana USAAbstract Introduction The study examined Black and White prospective participants’ views of barriers to and facilitators of participation in Alzheimer's disease (AD) biomarker research. Methods In a mixed‐methods study, 399 community‐dwelling Black and White older adults (age ≥55) who had never participated in AD research completed a survey about their perceptions of AD biomarker research. Individuals from lower socioeconomic and education backgrounds and Black men were over‐sampled to address perspectives of traditionally under‐represented groups. A subset of participants (n = 29) completed qualitative interviews. Results Most participants expressed interest in biomarker research (overall 69%). However, Black participants were comparatively more hesitant than White participants (28.9% vs 15.1%), were more concerned about study risks (28.9% vs 15.1%), and perceived multiple barriers to participating in brain scans. These results persisted even after adjusting for trust and perceived knowledge of AD. Information was a primary barrier (when absent) and incentive (when provided) for AD biomarker research participation. Black older adults desired more information about AD (eg, risk, prevention), general research processes, and specific biomarker procedures. They also desired return of results to make informed decisions about their health, research‐sponsored community awareness events, and for researchers to mitigate the burden placed on participants in research (eg, transportation, basic needs). Conclusion Our findings increase representativeness in the literature by focusing on individuals with no history of AD research experience and those from traditionally underrepresented groups in research. Results suggest that the research community needs to improve information sharing and raising awareness, increase their presence in the communities of underrepresented groups, reduce incidental costs, and provide valuable personal health information to participants to increase interest. Specific recommendations for improving recruitment are addressed. Future studies will assess the implementation of evidence‐based, socioculturally sensitive recruitment strategies to increase enrollment of Black older adults into AD biomarker studies. HIGHLIGHTS Individuals from under‐represented groups are interested in Alzheimer's disease (AD) biomarker research. After adjusting for trust and AD knowledge, Black participants were still more hesitant. Information is a barrier (when absent) to and incentive (when given) for biomarker studies. Reducing burden (e.g., transportation) is essential for recruiting Black older adults.https://doi.org/10.1002/trc2.12399Alzheimer's diseasebiomarker research proceduresBlack adultscommunity engaged researchhealth disparitiesminority health |
| spellingShingle | Johanne Eliacin Angelina J. Polsinelli Francine Epperson Sujuan Gao Sarah Van Heiden Glenda Westmoreland Ralph Richards Mollie Richards Christopher Campbell Hugh Hendrie Shannon L. Risacher Andrew J. Saykin Sophia Wang Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults Alzheimer’s & Dementia: Translational Research & Clinical Interventions Alzheimer's disease biomarker research procedures Black adults community engaged research health disparities minority health |
| title | Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults |
| title_full | Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults |
| title_fullStr | Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults |
| title_full_unstemmed | Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults |
| title_short | Barriers and facilitators to participating in Alzheimer's disease biomarker research in black and white older adults |
| title_sort | barriers and facilitators to participating in alzheimer s disease biomarker research in black and white older adults |
| topic | Alzheimer's disease biomarker research procedures Black adults community engaged research health disparities minority health |
| url | https://doi.org/10.1002/trc2.12399 |
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