Barriers and facilitators of African American participation in Alzheimer disease biomarker research.
African Americans experience a greater risk of Alzheimer disease (AD), but are underrepresented in AD research. Our study examined barriers and facilitators of AD research participation among African Americans. Investigators conducted 11 focus groups with African American participants (n=70) who discussed barriers and facilitators to AD research participation including lumbar puncture studies. The moderator and comoderator independently reviewed the transcripts, identified themes, and coded transcripts for analysis. Participants were predominately female (73%) with a mean age of 52 years (range 21 to 86 y). Concerns and attitudes were consistent across education, socioeconomic status, and sex. Mistrust was a fundamental reason for nonparticipation. Additional barriers included insufficient information dissemination in the African American community, inconvenience, and reputation of the researcher and research institution. Barriers to participation in AD biomarker studies were fear of the unknown and adverse effects. Altruism and relevance of research projects to the individual, family members, or the African American community facilitate participation. Increased participation results from relationships with the community that extend beyond immediate research interests, dissemination of research findings, and emphasis on relevance of proposed studies. Pervasive barriers impede African American participation in AD research but can be overcome through a sustained presence in the community.
Williams
Monique M
MM
Alzheimer's Disease Research Center, Department of Medicine, Washington University in St. Louis, MO 63108, USA. mwilliam@dom.wustl.edu
Scharff
Darcell P
DP
Mathews
Katherine J
KJ
Hoffsuemmer
Jonathan S
JS
Jackson
Pamela
P
Morris
John C
JC
Edwards
Dorothy F
DF
D022126:Access to Information; D000328:Adult; D001741:Black or African American; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000175:diagnosis; D001294:Attitude to Health; D005239:Fear; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D018579:Patient Selection; D035502:Trust; D055815:Young Adult