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Negotiating participation in oncology clinical trials for African Americans: race, identity, power, and barriers to health

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Title Negotiating participation in oncology clinical trials for African Americans: race, identity, power, and barriers to health
Publication Type dissertation
School or College College of Nursing
Department Nursing
Author Somayaji, Darryl Derner
Date 2012-08
Description Recruitment strategies often fail to examine practices and assumptions in terms of how race and racism shape African American perceptions of participation in cancer research, despite studies linking low participation with poor health outcomes. This study critically explored relationships between actual and potential African American research subjects and the research community to determine how history, discourse, and perceptions related to race, identity, and power constructed the role of research subject as a social identity, and how these relationships may contribute to sustaining inequitable relationships in cancer research. Data were collected during three focus group sessions with 1) individuals who were never recruited to participate in a cancer clinical trial (n=7), 2) individuals who participated in a cancer clinical trial (n=6); and 3) individuals who were approached to participate in a cancer clinical trial and have declined participation (n=3), using African American moderators. Sessions were audiotaped and transcribed verbatim. Analysis integrated a postcolonial perspective with sociolinguistic methods, comparing responses within and across the three groups. A detailed discussion explains how historical, discursive, and sociolinguistic approaches were synthesized into a method for analyzing how history and discourse co-construct "research subject." Focus group talk was analyzed in terms of how African Americans construct their relationship to medical science and how talk of significance, relationship, and identity shape ideas about cancer research and participation for the subjects in positive and negative ways. Positive concepts included historical roots, family, knowledge, accountability, and community. Negative concepts conveyed concerns of distrust, discrimination, limited resources, and lack of information about research studies. Data were also analyzed for relationships among fear, fatalism, and research subject identity, and how these concepts may influence research participation. Four key patterns emerged within the broader discourse of research: fears of the unknown, conspiracy, distrust, and discrimination. Study findings highlight how language mediates and constructs our understanding of cultural and historical practices surrounding cancer research and study recruitment. Recognizing the complex factors that construct relationships between minority subjects and cancer research may give us a better appreciation of individual agency, power, identity, and how the dynamics of individual, community, and organizations influence equitable healthcare.
Type Text
Publisher University of Utah
Subject MESH African Americans; Patient Outcome Assessment; Clinical Trials as Topic; Patient Selection; Culture; Informed Consent; Educational Status; Healthcare Disparities; Minority Health; Survival Rate; Neoplasms; Eligibility Determination; Social Discrimination; Sociological Factors; Patient Education as Topic; Focus Groups; Qualitative Research; Clinical Nursing Research
Dissertation Institution University of Utah
Dissertation Name Doctor of Philosophy
Language eng
Relation is Version of Digital reproduction of Negotiating Participation in Oncology Clinical Trials for African Americans: Race, Identity, Power, and Barriers to Health. Print version available at J. Willard Marriott Library Special Collections.
Rights Management Copyright © Darryl Derner Somayaji 2012
Format application/pdf
Format Medium application/pdf
Format Extent 1,335,459 bytes
ARK ark:/87278/s6zd1q7j
Setname ir_etd
ID 1198853
Reference URL https://collections.lib.utah.edu/ark:/87278/s6zd1q7j
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