Biomaterial Database

Fundamental causes of barriers to participation in Alzheimer's clinical research among African Americans. 2021

Karen D Lincoln, and Tiffany Chow, and Bryan F Gaines, and Terence Fitzgerald

Suzanne Dworak-Peck School of Social Work, University of Southern California, Los Angeles, CA, USA.

Objectives: African Americans have a significantly higher risk than Whites for developing Alzheimer's disease (AD), but show lower participation in AD clinical trials. Studies of African Americans' involvement in clinical research have identified fear and mistrust of research as barriers to participation. Historical occurrences of unethical research practices are often cited as the source of these attitudes, but underlying factors such as African Americans' experiences of racism and discrimination remain unexplored. The goal of this study was to examine the roles of race and culture in the attitudes and beliefs of African Americans about participating in clinical research.Design: Five focus groups were conducted with 44 African American men and women (aged 50 and over) in a western U.S. state. Participants were asked scripted questions regarding their knowledge and beliefs about AD and their feelings about participating in clinical research. A taxonomy was created to organize results based on participant responses.Results: Four major thematic clusters emerged that influence African Americans beliefs about and participation in clinical research: (a) experiences of unequal treatment and racism, (b) cultural trauma due to historical events and contemporary experiences, (c) racial identity and cultural norms, and (d) the importance of cultural competency and racial congruence in recruitment and research studies.Conclusions: Understanding, acknowledging, and addressing the factors that underlie mistrust and fear of research is important to build trust and to develop culturally appropriate outreach, education, and recruitment strategies that will increase African Americans' participation in clinical research.

UI	MeSH Term	Description	Entries
D007722	Health Knowledge, Attitudes, Practice	Knowledge, attitudes, and associated behaviors which pertain to health-related topics such as PATHOLOGIC PROCESSES or diseases, their prevention, and treatment. This term refers to non-health workers and health workers (HEALTH PERSONNEL).	Knowledge, Attitudes, Practice
D008297	Male		Males
D008875	Middle Aged	An adult aged 45 - 64 years.	Middle Age
D001741	Black or African American	A person having origins in any of the black racial groups of Africa (https://www.federalregister.gov/documents/1997/10/30/97-28653/revisions-to-the-standards-for-the classification-of-federal-data-on-race-and-ethnicity). In the United States it is used for classification of federal government data on race and ethnicity. Race and ethnicity terms are self-identified social construct and may include terms outdated and offensive in MeSH to assist users who are interested in retrieving comprehensive search results for studies such as in longitudinal studies.	African American,African Americans,African-American,Afro-American,Afro-Americans,Black Americans,Blacks,Negroes,African-Americans,Negro,Afro American,Afro Americans,American, African,American, Black,Black American
D005260	Female		Females
D006801	Humans	Members of the species Homo sapiens.	Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000368	Aged	A person 65 years of age or older. For a person older than 79 years, AGED, 80 AND OVER is available.	Elderly
D000544	Alzheimer Disease	A degenerative disease of the BRAIN characterized by the insidious onset of DEMENTIA. Impairment of MEMORY, judgment, attention span, and problem solving skills are followed by severe APRAXIAS and a global loss of cognitive abilities. The condition primarily occurs after age 60, and is marked pathologically by severe cortical atrophy and the triad of SENILE PLAQUES; NEUROFIBRILLARY TANGLES; and NEUROPIL THREADS. (From Adams et al., Principles of Neurology, 6th ed, pp1049-57)	Acute Confusional Senile Dementia,Alzheimer's Diseases,Dementia, Alzheimer Type,Dementia, Senile,Presenile Alzheimer Dementia,Senile Dementia, Alzheimer Type,Alzheimer Dementia,Alzheimer Disease, Early Onset,Alzheimer Disease, Late Onset,Alzheimer Sclerosis,Alzheimer Syndrome,Alzheimer Type Senile Dementia,Alzheimer's Disease,Alzheimer's Disease, Focal Onset,Alzheimer-Type Dementia (ATD),Dementia, Presenile,Dementia, Primary Senile Degenerative,Early Onset Alzheimer Disease,Familial Alzheimer Disease (FAD),Focal Onset Alzheimer's Disease,Late Onset Alzheimer Disease,Primary Senile Degenerative Dementia,Senile Dementia, Acute Confusional,Alzheimer Dementias,Alzheimer Disease, Familial (FAD),Alzheimer Diseases,Alzheimer Type Dementia,Alzheimer Type Dementia (ATD),Alzheimers Diseases,Dementia, Alzheimer,Dementia, Alzheimer-Type (ATD),Familial Alzheimer Diseases (FAD),Presenile Dementia,Sclerosis, Alzheimer,Senile Dementia
D017144	Focus Groups	A method of data collection and a QUALITATIVE RESEARCH tool in which a small group of individuals are brought together and allowed to interact in a discussion of their opinions about topics, issues, or questions.	Focus Group,Group, Focus,Groups, Focus
D044465	White People	Persons having origins in any of the white racial groups of Europe, the Middle East, or North Africa. Note that OMB category WHITE is available for the United States population groups. Race and ethnicity terms, as used in the federal government, are self-identified social construct and may include terms outdated and offensive in MeSH to assist users who are interested in retrieving comprehensive search results for studies such as in longitudinal studies.	European Continental Ancestry Group,White Person,Caucasian Race,Caucasoid Race,Caucasian Races,Caucasoid Races,People, White,Person, White,Race, Caucasian,Race, Caucasoid,White Peoples,White Persons