Examining uncertainty management in the clinical trial experiences of African American and Black Caribbean participants and the coordinators who recruit them

Abstract

Clinical research studies experience low accrual rates for African American and Black Caribbean participants. These low rates could result in treatment regimens that are less effective for these groups. This study applied a communication lens to the decision-making processes that occur when the groups are being recruited for studies. Attention was paid to how participants managed their uncertainty in decision-making. Focus group discussions were conducted with 48 participants, with exclusive groups for African American, Black Caribbean, and clinical research coordinator (CRC) participants. Respondents were asked semi-structured questions. While the CRCs were asked about their practices recruiting within these groups, the patients were asked about their experiences being recruited. Three themes were derived from the data. Participants experienced uncertainty when the quality of information was lacking. Many participants realized they had little knowledge about research and struggled with understanding medical terms; therefore, they sought to manage uncertainty by asking questions. Additionally, participants experienced uncertainty because of sources of uncertainty, including family experiences and historical narratives. Participants also offered strategies for managing uncertainty. For instance, recruiters must incorporate matriarchal figures and use clear information about the purpose, process, and potential outcomes. Altogether, our findings indicate that research on the cause of the low number of African American and Black Caribbean participants in research studies needs to examine how uncertainty is experienced and managed during the research recruitment process.