Anticipating all of the intricacies involved in the actual conduct of end-of-life research is an unending task. Once a study has been designed and its rationale discerningly thought out, recruiting participants poses a distinct challenge. Despite good intentions and countless attempts to cut across communication and incommensurable divides, "fear" of the unknown still effects attitudes, beliefs and behaviors of researchers and the researched.
Concern about refusers has spurred a series of discussions about hypothetical differences and explanatory variables distinguishing non-participants from participants in end-of-life research. Literature traditionally analyzes mistrust of the medical system, citing a particular socio-historical era as an underlying factor for abstractly thinking about why one would refuse to participate in medical research, as well as for concretely thinking about why African-Americans disproportionately refuse to participate in medical research. Specific differences between those who refuse to participate and those who consent to participate concern: 1) ethnicity, 2) satisfaction with medical care, 3) perception of personal benefit to be gained from participation in the research, 4) social support, and 5) importance of spirituality and religiosity.
Analyzing the differences in the above areas is essential to expanding customary approaches to conceptualizing distrust, particularly as it pertains to minority populations. It is important to "unpack" distrust in all phases of research, from research design to implementation, with the ultimate goal of ensuring that communication between researchers and potential research participants is not tainted with misattributions and biases.
Learning Objectives: 1. To articulate the complexities of mistrust associated with research with minority populations. 2. To evaluate how ethnicity, satisfaction with medical care, perception of personal benefit to be gained from participation in the research, social support, and importance of spirituality and religiosity distinguish consenting participants from refusers in end-of-life research. 3. To recognize one's own social and ethnic biases in approaching research, both conceptually and practically.
Keywords: Community Research, Ethnicity
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.