Medical Travel, Cancer, and Children in Argentina
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University of South Florida Scholar Commons Graduate Theses and Dissertations Graduate School 2011 Life and Death Journeys: Medical Travel, Cancer, and Children in Argentina Cecilia Vindrola Padros University of South Florida, [email protected] Follow this and additional works at: https://scholarcommons.usf.edu/etd Part of the American Studies Commons, and the Social and Cultural Anthropology Commons Scholar Commons Citation Vindrola Padros, Cecilia, "Life and Death Journeys: Medical Travel, Cancer, and Children in Argentina" (2011). Graduate Theses and Dissertations. https://scholarcommons.usf.edu/etd/3395 This Dissertation is brought to you for free and open access by the Graduate School at Scholar Commons. It has been accepted for inclusion in Graduate Theses and Dissertations by an authorized administrator of Scholar Commons. For more information, please contact [email protected]. Life and Death Journeys: Medical Travel, Cancer, and Children in Argentina by Cecilia Vindrola Padros A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Anthropology College of Arts and Sciences University of South Florida Major Professor: Linda M. Whiteford, Ph.D., MPH Heide M. Castañeda, Ph.D. Rebecca K. Zarger, Ph.D. Sherman Dorn, Ph.D. Eric Eisenberg, Ph.D. Date of Approval: September 9th, 2011 Keywords: Oncology, Critical Medical Anthropology, narrative research, parenting, childhood, hospitalization Copyright © 2011, Cecilia Vindrola Padros DEDICATION I dedicate this dissertation to my husband, my parents and my brother, for making me love Argentina as much as they do. ACKNOWLEDGEMENTS I would like to extend my gratitude to: all of the children and parents who participated in this study for their time and the willingness to share their stories with me; Fundación Natalí Dafne Flexer (FNDF) in Buenos Aires, Argentina for allowing me to use their facilities for my research; my family for their unconditional support; Dr. Linda M. Whiteford, my advisor, for her guidance, mentorship, and encouragement; my doctoral committee for strengthening the dissertation with their comments and suggestions; and the Fulbright-Garcia Robles Grant, CONACYT, AAUW, and the University of South Florida for their financial support during the doctoral program. TABLE OF CONTENTS Chapter 1: Introduction ........................................................................................................1 Research questions and methods .............................................................................3 Critical Medical Anthropology, narrative research, and the experience of traveling families ...............................................................................................5 Critical Medical Anthropology ....................................................................6 Narrative Research .......................................................................................8 Methods....................................................................................................................9 Findings..................................................................................................................11 Organization of the dissertation .............................................................................17 Chapter 2: Theoretical frameworks and literature review .................................................18 Critical Medical Anthropology ..............................................................................19 Narrative Research .................................................................................................22 The use of narratives in this dissertation................................................................26 Treatment narratives ..............................................................................................28 The narratives of traveling patients........................................................................33 Medical tourism and cross-border care ......................................................34 Medical travel ............................................................................................38 Medical geography.....................................................................................39 Children‘s and parents‘ treatment narratives .........................................................41 The medical construction of parents and pediatric patients .......................42 Parents‘ medical narratives ........................................................................47 Children‘s narratives ..................................................................................48 Parents‘ and children‘s narratives during oncology treatment ..................55 Studying child medical travelers and their parents ................................................61 Chapter 3: Setting the Stage: A Brief History of the Argentine Health System ................63 Religious organizations and the Protomedicato .....................................................64 The Sociedad de Beneficencia ...............................................................................65 The Agote Law and the role of the State ...............................................................69 The Fundacion Eva Peron and the centralization of health care ............................72 Decentralized planning ..........................................................................................76 Privatization and the defense of human rights .......................................................79 The current public health system ...........................................................................84 Cancer policies ...........................................................................................85 Chapter 4: Methodology ....................................................................................................90 i Data collection .......................................................................................................92 Interviews ...................................................................................................93 Visual methods...........................................................................................94 Participant observation...............................................................................95 Historical and contemporary documents research .....................................96 Frameworks for narrative analysis .........................................................................98 Process of data analysis .......................................................................................102 Sample..................................................................................................................105 Characteristics of the research participants..........................................................106 Ethical considerations ..........................................................................................111 Limitations of the study .......................................................................................112 Chapter 5: Results ............................................................................................................115 Characters ............................................................................................................115 Characters identified by the children .......................................................116 Characters identified by the parents .........................................................118 Scenes ..................................................................................................................118 Parents‘ scenes .........................................................................................120 The first sign that something was wrong .....................................121 They didn‘t know what my child had ..........................................122 We couldn‘t get a referral ............................................................124 Short-distance and long-distance referrals ...................................125 Preparing for departure ................................................................127 Dealing with paperwork and medication .....................................129 The ―f‖ word and child isolation ..................................................134 Shared scenes ...........................................................................................136 Medical procedures ......................................................................140 Hospital spaces.............................................................................144 Separation from family members.................................................146 Home away from home ................................................................150 ―It‘s like living again!‖: entering the control stage ......................151 ―It‘s back‖: scenes of relapse ......................................................153 Children‘s scenes .....................................................................................153 What I miss the most....................................................................153 School ..........................................................................................155 Scene variation .........................................................................................157 Hospital ........................................................................................158