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Copyright by Kathy Baker Wright 2003 Copyright by Kathy Baker Wright 2003 The Dissertation Committee for Kathy Baker Wright Certifies that this is the approved version of the following dissertation: Quality of Life, Self-Transcendence, Illness Distress, and Fatigue in Liver Transplant Recipients Committee: ____________________________________ Alexa M. Stuifbergen, Supervisor ____________________________________ Gayle J. Acton ____________________________________ Heather A. Becker ____________________________________ Doris D. Coward ____________________________________ Karen L. Rascati Quality of Life, Self-Transcendence, Illness Distress, and Fatigue in Liver Transplant Recipients by Kathy Baker Wright, B.S.N., M.S. Dissertation Presented to the Faculty of the Graduate School of The University of Texas at Austin In Partial Fulfillment Of the Requirements For the Degree of Doctor of Philosophy The University of Texas at Austin May 2003 DEDICATION This dissertation is dedicated to those nurse scientists who have gone before me to contribute to our discipline's knowledge base. Their work and efforts have laid a firm foundation for those of us who follow. ACKNOWLEDGMENTS This dissertation was supported by grant funding from the Society of Gastroenterology Nurses and Associates, International Transplant Nurses Society, and Sigma Theta Tau, Delta Theta chapter. The financial support of these organizations has enabled me to enhance my dissertation experience. I would like to thank the 471 liver transplant recipients who so willingly shared their experiences with me in order to build scientific knowledge regarding quality of life after transplant. Jeff Crippin, MD and Marlon Levy, MD made this study possible through their willingness to facilitate my access to participants. I am grateful for their support and encouragement of my efforts and for the staff at their respective institutions who helped me with numerous requests and challenges. I am indebted to my chair, Alexa Stuifbergen, PhD, RN, FAAN, and my committee members, Gayle Acton, PhD, RN, CS; Heather Becker, PhD; Doris Coward, PhD, RN; and Karen Rascati, PhD, RPh, who invested in my scholarly efforts through their teaching and mentoring. It has been an incredible experience as a doctoral student to grow alongside such prestigious scientists and leaders. My desire is to build on the legacy they have given me. Many thanks, also, to Pat Dickson who mentored me through the data analysis process. She gave me confidence and made the experience fun and exciting. I could not have completed my analysis without her expertise and willingness to "customize" my learning experience. The faculty, staff, and students at University of Texas at Arlington where I teach could not have been more supportive and encouraging. I thank them for believing I have v the potential to succeed as a nurse scholar, their willingness to sacrifice so that I could have a reasonable teaching load in order to excel in my studies, and their ongoing cheerleading and support for my progress over these many years. They are the best! Many personal friends have inspired me to stand strong and pursue excellence through this experience. In particular, Lee and Paula Howell; Debbie Purvis, MEd, LPC; Susan Rugari, PhD, RN; Tom and Donna Reeves, LVN; Debbie Volker, PhD, RN; Terri Jones, PhD candidate, RN; and Valerie Hart, PhD candidate, RN have walked each step with me, providing solace, encouragement, and a great deal of laughter along the way. Phil and Donya Jacks were incredible "surrogate" parents and I am grateful for their unselfish care of my girls on so many occasions during my doctoral pursuits. Finally, I thank my daughters, Lauren and Jenna. Mom has been a student their entire lives. Their understanding and support of my passion for learning has comforted me and allowed me to pursue God's plan for my life without guilt or regret. They are my greatest joy and blessing in life. vi Quality of Life, Self-Transcendence, Illness Distress, and Fatigue in Liver Transplant Recipients Publication No. Kathy Baker Wright, Ph.D. The University of Texas at Austin, 2003 Supervisor: Alexa M. Stuifbergen This cross sectional study described the relationship between quality of life (QOL) and self-transcendence (ST) in liver transplant recipients. Self-transcendence is a dynamic process reflecting spiritual growth and maturity and a broadening of personal perspective during challenging life experiences. Illness distress, fatigue, age, gender, marital status, education, and time-since-transplant were also investigated relative to QOL. Participants (n = 471) were primarily Caucasian (86.5%), male (53.5%), married (73.5%), religiously affiliated (93.4%), and perceived their health status as "good" (48%) or "excellent" (19%). Participants with the highest ST scores (M = 3.36, S.D. = .37, possible range 1-4) were female, older (65-79 years), or recently transplanted (< 2 years). Females reported significantly higher ST scores than males. Participants with the highest QOL scores (M = 23.73, S.D. = 4.88, possible range = 0-30) were female, older (65-79 years), and transplanted 3-5 years ago. Strong relationships existed between QOL and ST scores (r = .51, p < .01), illness distress and fatigue scores (r = .51, p < .01), and QOL and illness distress scores (r = -.71, p < .01). Moderate relationships existed between QOL and fatigue scores (r = -.45, p < .01) and ST and illness distress scores (r = -.36, p < .01). Self-transcendence and fatigue scale scores had a weak relationship (r = -.20, p < .01). vii Illness distress scores were low (M = 15.30; SD = 13.47, possible range 0-88) as were fatigue scores (M = 4.23; SD = 2.04, possible range 1-10). Regression analysis revealed illness distress, ST, fatigue, and age accounted for 60% of the variance in QOL scores. Most respondents reported post-transplant QOL as better than expected. Comorbidities had a major impact on post-transplant QOL. Financial resources were adequate. Multiple factors were cited as important to QOL including family, friends, health, spirituality, productivity, happiness, and job security. This study suggests self-rated QOL and ST are high for liver transplant recipients while illness distress and fatigue are low. Females have significantly higher ST scores than males. Self-transcendence, illness distress, fatigue, and age are important factors related to QOL and should be further investigated. viii TABLE OF CONTENTS LIST OF TABLES ……………………………………………………………………..xiii LIST OF FIGURES ……………………………………………………………….….. xiv CHAPTER ONE INTRODUCTION………………………………………………………………. 1 Purpose………………………………………………………………………….. 3 Background and Significance of Study ..……………………………………….. 4 Statement of Problem …………………………………………………………… 6 Conceptual Framework …………………………………………………………. 7 Self-Transcendence …………………………………………………………..9 Quality of Life ………………………………………………………………11 Research Questions ……………………………………………………………..12 Definitions …………………………………………………………………….. 13 Assumptions …………………………………………………………………... 13 Limitations …………………………………………………………………….. 14 Summary ………………………………………………………………………. 15 CHAPTER TWO REVIEW OF LITERATURE …………………………………………………. 16 Liver Transplantation ………..………………………………………………… 16 Physiologic Impact of Liver Transplantation ……………………………... 18 Pre-Transplant Status ...…………………………………………………18 Post-Transplant Status………………………………………………….. 19 Psychologic Impact of Liver Transplantation….………………………….. 23 Pre-Transplant Status .………………………………………………… 23 Post-Transplant Status...……………………………………………….. 24 Social Impact of Liver Transplantation .…………………………………... 29 Pre-Transplant Status ……… ………………………………………… 29 Post-Transplant Status… …………………………………………….. 30 Spiritual Impact of Liver Transplantation.………………………………… 33 Illness Distress……………………………………………………………... 33 Summary of Liver Transplantation Literature……………………………... 38 Self-Transcendence...…………………………………………………………... 39 Definitions and Descriptions of Self-Transcendence..……………………... 40 Characteristics of Self-Transcendence ..…………………………………… 46 Antecedents of Self-Transcendence ..……………………………………… 47 Outcomes of Self-Transcendence...………………………………………… 48 Theoretical Aspects of Self-Transcendence.………………………………. 50 Reed's Self-Transcendence Theory …………………………………… 50 ix Intrapersonal Aspects of Self-Transcendence.…………………….. 52 Interpersonal Aspects of Self-Transcendence …………………….. 52 Transpersonal Aspects of Self-Transcendence.……………………. 52 Limitations of Reed's Theory ..……………………………………. 54 Other Theories of Self-Transcendence.………………………………... 54 Research on Self-Transcendence .…………………………………………. 61 Self-Transcendence and Chronic Liver Disease……………………….. 69 Self-Transcendence and Fatigue…..…………………………………… 70 Measurement of Self-Transcendence.……………………………………... 72 Summary of Self-Transcendence Literature………………………………. 75 Quality of Life...……………………………………………………………….. 76 Definitions and Characteristics of Quality of Life ………………………... 77 Measurement in Quality of Life Research.………………………………… 80 Research Studies of Quality of Life and Liver Transplantation..…………. 82 Quality of Life in Liver Transplant Recipients………………………… 82 Quality of Life and Transplant-Related Demographic Factors………… 97 Summary of Quality of Life Literature …………………………………... 102 Summary of Literature Review..……………………………………………… 102 CHAPTER THREE METHODS ……………………………………………………………………105 Population and Sample ……………………………………………………….. 105 Procedures for Data Collection ………………………………………………..106 Instrumentation ………………………………………………………………..107 Self-Transcendence Scale………………………………………………….107 Quality of Life Index-Liver Transplant …………………………………... 109 Illness Distress
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