Cancer fear and fatalism: how African American participants construct the role of research subject in relation to clinical cancer research.

Abstract

Lack of African American participation in cancer clinical trials has been identified as a critical problem. Historical interactions related to race, identity, and power may contribute to continued inequity in healthcare and research participation. The aim of this study was to explore the perceptions of African Americans regarding cancer and research and how these perceptions shape their beliefs about participating as cancer research subjects. Three African American focus groups were conducted including people who had never participated in cancer research, those who had, and those who were asked but refused (n = 16). Discussion focused on their perceptions of cancer research and actual or potential participation as research subjects. Data were coded using both structured and inductive coding methods. Fear and fatalism emerged in relation to research, race, power, and identity and were related to larger historical and social issues rather than only individual thoughts or feelings. Participants described fears of the unknown, death, mistrust, conspiracy, and discrimination together with positive/negative tensions between self, family, and community responsibilities. Complex identities linked perceptions of cancer and cancer research with broader historical and cultural issues. Fear, fatalism, and current and historical relationships influence how people perceive themselves as research subjects and may influence their decisions to participate in cancer research. Acknowledging how complex factors including race and racism contribute to health disparities may give nurses and other healthcare providers a better appreciation of how historical, social, and cultural dynamics at individual, community, and organizational levels influence access to and participation in cancer research.