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

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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. IMPLICATION FOR PRACTICE: 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.

Uniting postcolonial, discourse, and linguistic theory to explore participation of African Americans in cancer research as an effect of social and historical race relationships.

This article uses a historical framework of postcolonialism; discourse analytic concepts (significance, identity, and relationships); and 5 social and cultural linguistic principles of emergence, positionality, indexicality, relationality, and partialness as a theoretical and methodological triangulation approach to data analysis of focus group discussion. Exemplars of focus group data from a study exploring African American participation in research demonstrate the application of this combined framework as a useful tool for analysis. This approach allows for examination of identity and interaction and generates a more rigorous and complete understanding of how individuals use language to construct identity as participants or nonparticipants in research.

Prisoners signify: a political discourse analysis of mental illness in a prison control unit.

Increasingly, US prisoners diagnosed with mental illness are housed in control units, the most restrictive form of confinement in the US prison system. This situation has led to intense debate over the legal, ethical and clinical status of mental illness. This is a semiotic struggle with profound effects, yet most related work treats mental illness as a neutral, individual variable. Few analyses locate mental illness within a larger sociopolitical context. Fewer still focus on discursive practice. None critically analyze the accounts of control unit prisoners, who talk about extreme marginality and risk for victimization. This paper has two aims: (i) to develop a systematic method of analysis that accounts for signification as discourse-in-action; and (ii) to show how prisoners' signification of mental illness articulates agency through and against marginalizing discourse. Political discourse analysis demonstrates how control unit prisoners with psychiatric diagnoses signify mental illness, and articulate safer identifications in the process.

An ethic of analysis: an argument for critical analysis of research interviews as an ethical practice.

Nursing literature is replete with discussions about the ethics of research interviews. These largely involve questions of method, and how careful study design and data collection technique can render studies more ethical. Analysis, the perennial black box of the research process, is rarely discussed as an ethical practice. In this paper, I introduce the idea that analysis itself is an ethical practice. Specifically, I argue that political discourse analysis of research interviews is an ethical practice. I use examples from my own research in a prison control unit to illustrate what this might look like, and what is at stake.