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Dissertation TYPESET V2

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Dissertation TYPESET V2 HOPE AS A DISCURSIVE PRACTICE IN CANCER RESEARCH DECISION-MAKING by Kathleen Kay Shannon Dorcy A dissertation submitted to the faculty of The University of Utah in partial fulfillment of the requirements for the degree of Doctor of Philosophy College of Nursing The University of Utah August 2011 Copyright © Kathleen Kay Shannon Dorcy 2011 All Rights Reserved The University of Utah Graduate School STATEMENT OF DISSERTATION APPROVAL The dissertation of Kathleen Kay Shannon Dorcy has been approved by the following supervisory committee members: Kristin Gates Cloyes , Chair 4/22/11 Date Approved Kathleen Mooney , Member 4/22/11 Date Approved Patricia A. Berry , Member 4/22/11 Date Approved Betty Ferrell , Member 5/13/11 Date Approved Karin DuFault , Member 5/12/11 Date Approved and by Maureen R. Keefe , Chair of the Department of Nursing and by Charles A. Wight, Dean of The Graduate School. ABSTRACT The purpose of this study was to examine hope both as a powerful discursive element in health-related literature and as a discursive practice in cancer research decision-making by patients, family caregivers, and physician researchers in a quaternary cancer research center. The practice of hope is an important activity for people diagnosed with cancer, but the unexamined, taken-for-granted practice of hope may exert undue influences on the decision-making/informed consent process for cancer research participation. A genealogy (systematic analysis that illustrates the complex and often contradictory historical influences that culminate in the construction of a concept) of hope was created using philosophical, theological, and literary resources. From these analyses, major discourse practices of hope were identified. Then a focused discourse analysis of representative articles on hope published between 1999 and 2008 in the journal Advances in Nursing Science examined how influential articles reify hope as an object—with the result that hope becomes something that can be given or taken away from patients, thus limiting the scope of how hope can be enacted. A secondary analysis of 109 transcripts from 25 cancer patients enrolled in Phase II clinical trials for hematopoietic stem cell transplants analyzed how patients, family caregivers (n=20), and physician researchers (n=10) used metaphors to construct and represent cancer, medicine, science, and agency. Rhetorical analysis was utilized to indentify patterns of persuasion present in the transcripts that reinforced the hope imperative for patients to enroll in cancer research. Metaphors used by study participants were not neutral, but rather were dynamic forces that demonstrated the discursive power and hope’s centrality to decision-making for cancer research participation. Current discursive practices of the informed consent process allow researchers to meet federal and regulatory guidelines while ignoring a potential coerciveness in the underlying dynamics of hope-for-cure and the hope imperative. The implications of this work are significant for bioethics. This work will help cancer research professionals engage in informed consent processes that minimize the elements of coercion. The practice of hope may then be allowed to embrace outcomes beyond cure. iv TABLE OF CONTENTS ABSTRACT....................................................................................................................... iii LIST OF TABLES........................................................................................................... viii ACKNOWLEDGMENTS ................................................................................................. ix CHAPTERS I. INTRODUCTION........................................................................................................... 1 Statement of Problem.......................................................................................................... 1 Purpose................................................................................................................................ 2 Research Questions............................................................................................................. 3 Specific Aims...................................................................................................................... 4 References........................................................................................................................... 6 II. BACKGROUND AND SIGNIFICANCE ..................................................................... 7 Cancer Research.................................................................................................................. 7 Hope and Cancer................................................................................................................. 7 Hope as an Interpersonal Interaction .................................................................................. 8 Measuring Hope.................................................................................................................. 9 Hope and Hopelessness..................................................................................................... 10 Decision-Making............................................................................................................... 12 Early Phases of Clinical Trials.......................................................................................... 14 Significance....................................................................................................................... 16 References......................................................................................................................... 18 III. THEORETCIAL AND METHODOLOGICAL FRAMEWORK.............................. 21 Introduction....................................................................................................................... 21 Bourdieu ........................................................................................................................... 22 Habitas.............................................................................................................................. 22 Language as Ontology ...................................................................................................... 23 Agency .............................................................................................................................. 24 Genealogy ......................................................................................................................... 25 Brief Genealogy of Hope.................................................................................................. 26 Research Design and Methods.......................................................................................... 27 Content Analysis............................................................................................................... 28 Critical Discourse Analysis............................................................................................... 28 Methods and Measures ...................................................................................................... 30 Sources of Data ................................................................................................................. 32 Study Rigor ....................................................................................................................... 34 Summary ........................................................................................................................... 34 Overview of Specific Analyses ......................................................................................... 36 References ......................................................................................................................... 39 IV. HEGEMONY, HERMENEUTICS, AND THE HEURISTIC OF HOPE .................. 43 Hegemony, Hermeneutics, and the Heuristic of Hope ...................................................... 44 ANS Studies ...................................................................................................................... 44 Key Concepts .................................................................................................................... 45 Hope .................................................................................................................................. 45 Selected Genealogy of Hope ............................................................................................. 48 Hope in Modern Discourse ............................................................................................... 48 Hope as an Interpersonal Interaction ................................................................................. 49 Measuring Hope ................................................................................................................ 49 Context of Methodological Review .................................................................................. 49 Discussion ......................................................................................................................... 52 Alternative to Conceptualizing Hope ................................................................................ 54 Conclusion ......................................................................................................................... 54 References ........................................................................................................................
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