title: African American women's perceptions of cancer clinical trials.
abstract: Cancer clinical trials are important for resolving cancer health disparities for several reasons; however, clinical trial participation among African Americans is significantly lower than Caucasians. This study engaged focus groups of 82 female African American cancer survivors or cancer caregivers, including those in better resourced, more urban areas and less resourced, more rural areas. Informed by an integrated conceptual model, the focus groups examined perceptions of cancer clinical trials and identified leverage points that future interventions may use to improve enrollment rates. Study findings highlight variation in community knowledge regarding cancer clinical trials, and the importance of community education regarding clinical trials and overcoming historical stigma associated with clinical research specifically and the health care system more generally. Study participants commented on the centrality of churches in their communities, and thus the promise of the church as loci of such education. Findings also suggested the value of informed community leaders as community information sources, including community members who have a previous diagnosis of cancer and clinical trial experience. The sample size and location of the focus groups may limit the generalizability of the results. Since the women in the focus groups were either cancer survivors or caregivers, they may have different experiences than nonparticipants who lack the close connection with cancer. Trust in the health system and in one's physician was seen as important factors associated with patient willingness to enroll in clinical trials, and participants suggested that physicians who were compassionate and who engaged and educated their patients would build important trust requisite for patient participation in clinical trials.
authors.affiliation: Health Policy and Management, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.
authors.forename: Lindsey
authors.initials: L
authors.lastname: Haynes-Maslow
authors.forename: Paul
authors.initials: P
authors.lastname: Godley
authors.forename: Lisa
authors.initials: L
authors.lastname: Dimartino
authors.forename: Brandolyn
authors.initials: B
authors.lastname: White
authors.forename: Janice
authors.initials: J
authors.lastname: Odom
authors.forename: Alan
authors.initials: A
authors.lastname: Richmond
authors.forename: William
authors.initials: W
authors.lastname: Carpenter
mesh_terms: D001741:Black or African American / Q000523:psychology*; D035843:Biomedical Research; D017028:Caregivers; D002986:Clinical Trials as Topic; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008875:Middle Aged; D008962:Models, Theoretical; D009369:Neoplasms / Q000628:therapy; D010465:Perception; D012307:Risk Factors; D017741:Survivors; D035502:Trust
keywords: African Americans; cancer; clinical research; racial disparities; recruitment