The Experience of Families When a Child is Diagnosed with Cancer with a Favorable Prognosis by Laura Clarke-Steffen A Doctoral Dissertation Presented to Oregon Health Sciences University School of Nursing in partial fulfillment of the requirements for the degree of Doctor of Philosophy May, 1990 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Copy Right 1991 By Clarke-Steffen, Laura All Rights Reserved Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. This research was supported, in part, by Public Health Service National Research Service Award # NR06157, through the National Center for Nursing Research; the Sigma Theta Tau, Beta Psi Chapter, Research Award; and the Focal Area III, Oregon Health Sciences University, School of Nursing Small Grant. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Acknowledgements My advisor, Sheila Kodadek, has been a constant support behind this dissertation. She has had the unique ability to push me when I needed it, to back off when I needed a break, and to ignite my thinking when I became stuck. I appreciate the fact that she has made herself available for consultation whenever necessary. My other committee members have added also to this research effort. Barbara Limandri has been helpful in solving some clinical situations and in dragging the theory kicking and screaming from the data. Bar­ bara Valanis has given her critical remarks and knowledge of cancer to the formulation of this dissertation. For the completion of this study, I am most indebted to the families who were willing to share their lives with me by participating in this study. They willingly gave of their time and themselves by telling their stories and welcoming me into their homes. I would like to mention for their help with technical assistance, Carol Holt and Bev Rogers. In addition, Martha Haylor was instrumental in coding the interviews. I would like to thank Linda Birenbaum, whom I worked for as a research assistant as I began my doctoral education. She has done much toward shaping my research interests and abilities, setting an example of tireless questioning and questing for knowledge. She also provided the emotional support needed to take on the arduous role of researcher. Several members of my family have also provided the love and support necessary to take on a project such as this one. Thanks to my husband, Bob, for Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. his chauffeuring aid during the data collection, for the many hours he spent in the library photocopying articles and for his continued support and confidence in me. Thank you also to my parents, Milton and Dorothy Clarke, and Gordon, Ginny, Doug, Carolyn, Rob, Bianca, Jeff, Jane, Traci, Brandon, Ryan, Lindsey, and Bruce. Without their support, I do not think I would have finished this program. Finally thanks are due to Brandy, Jonathon, and Jimmy who first caused me to question how families experienced the diagnosis of and transition to living with childhood cancer. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. TABLE OF CONTENTS Page List of Tables.........................................................................................................viii List of Figures..........................................................................................................ix Chapter 1 Introduction ....................................................................................... 1 Significance of the Problem .........................................................................1 Transition Perspective ............................................................................... 2 Symbolic Interaction and Grounded Theory ........................................... 3 Definitions ....................................................................................................3 Chapter 2 Review of Literature.......................................................................... 5 Introduction ..................................................................................................5 Illness Experience ...................................................................................... 5 Family Members' Responses to Childhood Cancer ....................................6 Transitions .................................................................................................. 29 Summary.................................................................................................... 44 Chapter 3 Methods ........................................................................................... 48 Assumptions............................................................................................ 48 Design........................................................................................................ 49 Setting.........................................................................................................49 Sample .................................................................................................... 50 Interview .....................................................................................................60 Procedure................................................................................................ 62 Ethical Issues.............................................................................................. 65 Reproduced with permission of the copyright owner. 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Analysis ...................................................................................................... 67 Limitations ..................................................................................................70 Chapter 4 Analysis: Family Transition to Living with Childhood Cancer.. 72 First Clue.................................................................................................... 74 Limbo...................................................................................................... 78 Strategies Used to Reconstruct Reality ..................................................... 86 New Normal........................................................................................... 113 Timing of the Transition ...........................................................................119 Chapter 5 Discussion and Implications ........................................................... 121 The Family Transition to Living with Childhood Cancer ....................... 121 Implications for the Delivery of Nursing Care...................................... 137 Implications for Research ........................................................................ 144 Methodological Implications ...................................................................145 Summary.................................................................................................. 151 References .......................................................................................................... 155 Appendices ...................................................................................................... 167 Appendix A: Interview Schedules .........................................................167 Appendix B: Family Information Sheet ............................................. 174 Appendix C: Consent Forms ...............................................................177 Appendix D: Family Interview Code Sheet Example ............................. 186 Appendix E: Family Transition Summary Sheet .....................................191 Abstract.............................................................................................................. 193 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. viii LIST OF TABLES Number Page 1 Transition Concept Delineation by Perspective ............................. 30 2 Characteristics of the Families ........................................................... 52 3 Characteristics of the Fathers ............................................................. 53 4 Characteristics of the Mothers ......................................................... 53 5 Characteristics of the III Children .......................................................54 6 Characteristics of the Siblings......................................................... 55 7 Favorable Prognosis Cancer Diagnoses and Disease Free Survival Rates.................................................................................. 59 Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. LIST OF FIGURES Number Page 1 Family Transition to Living with Childhood Cancer ......................................73 2 First Clue..........................................................................................................75 3 Managing the Flow of Information ............................................................. 93 4 Managing the Medical Regimen ............................................................... 102 5 Assigning Meaning to the Illness ................................................................. 108 6 New Normal................................................................................................. 114 Reproduced with permission