Framework for Creating Storytelling Materials to Promote African American/Black Adult Enrollment in Research on Alzheimer's Disease and Related Disorders

Overview

Journal Alzheimers Dement (N Y)

Date 2020 Sep 30

PMID 32995472

Citations 10

Authors

Rena A S Robinson

Ishan C Williams

Judy L Cameron

Keisha Ward

Melissa Knox

Melita Terry

Lisa Tamres

Uchenna Mbawuike

Marita Garrett

Jennifer H Lingler

Affiliations

Soon will be listed here.

Abstract

Introduction: African American/Black adults are severely underrepresented in basic, clinical, and behavioral research studies in Alzheimer's disease and related disorders (ADRD). Innovative, evidence-based, and culturally salient strategies can maximize the recruitment of African American/Black adults into ADRD research.

Methods: We conducted and analyzed semi-structured interviews to capture the research participation stories of African American/Black participants and study partners from the University of Pittsburgh's Alzheimer's Disease Research Center. The themes and messaging principles generated through this process informed the development of video- and text-based materials that were evaluated for community member acceptance using focus groups.

Results: Focus group individuals (N = 36) generally favorably rated the video and text materials, characterizing them as "interesting," "realistic," and "convincing."

Discussion: Capturing the narratives of African American/Black research participants is a critical component to developing culturally relevant materials for broader dissemination and is essential to advancing beyond information-only recruitment approaches, which tend to rely disproportionately on negative messages.

Citing Articles

Public and participant involvement as a pathway to inclusive dementia research.

Walter S, McArdle R, Largent E, Edelmayer R, Sexton C, Sandoval S Alzheimers Dement. 2024; 21(1):e14350.

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Recruiting Persons With Dementia: A Systematic Review of Facilitators, Barriers, and Strategies.

Hirt J, Beer T, Cavalli S, Cereghetti S, Pusterla E, Zeller A Am J Alzheimers Dis Other Demen. 2024; 39:15333175241276443.

PMID: 39137907 PMC: 11322929. DOI: 10.1177/15333175241276443.

COVID-19 pandemic's relationship with enrollment at US Alzheimer's Disease Research Centers.

Shaaban C, Lin H, Terry M, Ren D, Lingler J Alzheimers Dement. 2024; 20(4):2408-2419.

PMID: 38298163 PMC: 11032582. DOI: 10.1002/alz.13706.

Barriers and solutions to Alzheimer's disease clinical trial participation for Black Americans.

Savold J, Cole M, Thorpe Jr R Alzheimers Dement (N Y). 2023; 9(3):e12402.

PMID: 37408664 PMC: 10318422. DOI: 10.1002/trc2.12402.

Mechanisms by Which Cultural-Centric Narrative Influences Interest in ADRD Research Among African American Adults.

Lingler J, Ren D, Tamres L, Knox M, Mbawuike U, Williams I Gerontologist. 2022; 63(6):1060-1066.

PMID: 36544399 PMC: 10353039. DOI: 10.1093/geront/gnac179.

References

Williams I, Utz S, Hinton I, Yan G, Jones R, Reid K . Enhancing diabetes self-care among rural African Americans with diabetes: results of a two-year culturally tailored intervention. Diabetes Educ. 2014; 40(2):231-9. PMC: 4692724. DOI: 10.1177/0145721713520570. View

Affonso D, Shibuya J, Frueh B . Talk-story: perspectives of children, parents, and community leaders on community violence in rural Hawaii. Public Health Nurs. 2007; 24(5):400-8. DOI: 10.1111/j.1525-1446.2007.00650.x. View

Bushy A . Conducting culturally competent rural nursing research. Annu Rev Nurs Res. 2008; 26:221-36. View

Utz S, Williams I, Jones R, Hinton I, Alexander G, Yan G . Culturally tailored intervention for rural African Americans with type 2 diabetes. Diabetes Educ. 2008; 34(5):854-65. PMC: 3622474. DOI: 10.1177/0145721708323642. View

McDonald D, Goncalves P, Almario V, Krajewski A, Cervera P, Kaeser D . Assisting women to learn myocardial infarction symptoms. Public Health Nurs. 2006; 23(3):216-23. DOI: 10.1111/j.1525-1446.2006.230303.x. View

Robinson R, Williams I, Cameron J, Ward K, Knox M, Terry M . Framework for creating storytelling materials to promote African American/Black adult enrollment in research on Alzheimer's disease and related disorders. Alzheimers Dement (N Y). 2020; 6(1):e12076. PMC: 7507510. DOI: 10.1002/trc2.12076. View

Williams M, Scharff D, Mathews K, Hoffsuemmer J, Jackson P, Morris J . Barriers and facilitators of African American participation in Alzheimer disease biomarker research. Alzheimer Dis Assoc Disord. 2010; 24 Suppl:S24-9. PMC: 2939138. DOI: 10.1097/WAD.0b013e3181f14a14. View

Mehta K, Yin M, Resendez C, Yaffe K . Ethnic differences in acetylcholinesterase inhibitor use for Alzheimer disease. Neurology. 2005; 65(1):159-62. PMC: 2830864. DOI: 10.1212/01.wnl.0000167545.38161.48. View

Williams I, Utz S, Jones R, Hinton I, Steeves R, Alexander G . Recruitment of Rural African Americans for Research Projects: Lessons Learned. South Online J Nurs Res. 2014; 11(1):8. PMC: 4004586. View

10.

Potter G, Plassman B, Burke J, Kabeto M, Langa K, Llewellyn D . Cognitive performance and informant reports in the diagnosis of cognitive impairment and dementia in African Americans and whites. Alzheimers Dement. 2009; 5(6):445-53. PMC: 2805266. DOI: 10.1016/j.jalz.2009.04.1234. View

11.

Yang L . The life stories of motherhood among divorced women in Taiwan. J Nurs Res. 2008; 16(3):220-30. DOI: 10.1097/01.jnr.0000387309.19493.b0. View

12.

Hagerty Lingler J, Parker L, DeKosky S, Schulz R . Caregivers as subjects of clinical drug trials: a review of human subjects protection practices in published studies of Alzheimer's disease pharmacotherapies. IRB. 2006; 28(3):11-8. View

13.

Black B, Taylor H, Rabins P, Karlawish J . Study partners perform essential tasks in dementia research and can experience burdens and benefits in this role. Dementia (London). 2016; . PMC: 5107353. DOI: 10.1177/1471301216648796. View

14.

Kelley A, McGarry K, Gorges R, Skinner J . The burden of health care costs for patients with dementia in the last 5 years of life. Ann Intern Med. 2015; 163(10):729-36. PMC: 4809412. DOI: 10.7326/M15-0381. View

15.

Gilmore-Bykovskyi A, Jin Y, Gleason C, Flowers-Benton S, Block L, Dilworth-Anderson P . Recruitment and retention of underrepresented populations in Alzheimer's disease research: A systematic review. Alzheimers Dement (N Y). 2020; 5:751-770. PMC: 6944728. DOI: 10.1016/j.trci.2019.09.018. View

16.

Njeru J, Patten C, Hanza M, Brockman T, Ridgeway J, Weis J . Stories for change: development of a diabetes digital storytelling intervention for refugees and immigrants to minnesota using qualitative methods. BMC Public Health. 2015; 15:1311. PMC: 4696160. DOI: 10.1186/s12889-015-2628-y. View

17.

Demirovic J, Prineas R, Loewenstein D, Bean J, Duara R, Sevush S . Prevalence of dementia in three ethnic groups: the South Florida program on aging and health. Ann Epidemiol. 2003; 13(6):472-8. DOI: 10.1016/s1047-2797(02)00437-4. View

18.

Grassley J, Nelms T . Tales of resistance and other emancipatory functions of storytelling. J Adv Nurs. 2009; 65(11):2447-53. DOI: 10.1111/j.1365-2648.2009.05105.x. View

19.

Grandbois D, Sanders G . Resilience and stereotyping: the experiences of Native American elders. J Transcult Nurs. 2012; 23(4):389-96. DOI: 10.1177/1043659612451614. View

20.

Besser L, Kukull W, Knopman D, Chui H, Galasko D, Weintraub S . Version 3 of the National Alzheimer's Coordinating Center's Uniform Data Set. Alzheimer Dis Assoc Disord. 2018; 32(4):351-358. PMC: 6249084. DOI: 10.1097/WAD.0000000000000279. View