This paper describes results of a qualitative study that explored barriers to research participation among African American adults. A purposive sampling strategy was used to identify African American adults with and without previous research experience. A total of 11 focus groups were conducted. Groups ranged in size from 4–10 participants (N = 70). Mistrust of the health care system emerged as a primary barrier to participation in medical research among participants in our study. Mistrust stems from historical events including the Tuskegee syphilis study and is reinforced by health system issues and discriminatory events that continue to this day. Mistrust was an important barrier expressed across all groups regardless of prior research participation or socioeconomic status. This study illustrates the multifaceted nature of mistrust, and suggests that mistrust remains an important barrier to research participation. Researchers should incorporate strategies to reduce mistrust and thereby increase participation among African Americans.
African Americans experience a greater risk of Alzheimer's 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 (LP) studies. The moderator and co-moderator independently reviewed transcripts, identified themes, and coded transcripts for analysis. Participants were predominately female (73%) with a mean age of 52y (range 21-86y). Concerns and attitudes were consistent across education, socioeconomic status, and gender. 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.
Survivor stories may be most effective when audience members identify with the survivor. Finding key characteristics that can reliably match the two will advance cancer communication science and practice.
Text messaging had minimal impact on improving smoking cessation rates in the obstetric population. However, further research is warranted because of the underpowered nature of this trial. Given the detrimental effects of smoking in pregnancy, more comprehensive cessation strategies are warranted.
Purpose: Lack of trust and rapport with health care providers has been identified in the under-representation of racial/ethnic minorities within clinical trials. Our study used a coach to promote trust among minority patients with advanced cancer.
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