Copyright © 2011 By Cindy A. Wojtecki All rights reserved ii DEDICATION AND ACKNOWLEDGEMENTS This work is dedicated to my father, John James Bileschi (1928-1979), my maternal grandmother, Louise N. Berry (1913-1992), And my very much alive and vibrant Mom, Dixie Lee Bileschi My father filed for bankruptcy when I was a senior in high school. No one in my family had ever gone to college or even a trade school. Yet, in 1972 my parents helped me go to college. My grandmother offered to help with the state tuition because she wanted me to be a nurse. Thirty-four years later, when entered a Ph.D. in nursing, I asked my mother how it was that I went away to college when family resources were scant and I, as the oldest of five children, was needed at home. She told me there had never been any discussion that I wouldn‟t go to college. Likewise, pursuing a doctorate degree appeared to be a natural next step for an insatiable learner. I was preparing to retire from the Veterans Administration after 33 years caring for veterans in a variety of clinical and administrative roles. Although, it was much more than just a natural next step - it was a courageous undertaking - the magnitude of which I could never have anticipated. If not for the expertise and encouragement that I received from my advisor and dissertation chair, Meg Wallhagen, I would never have completed this dissertation study. Meg is an insightful and patient mentor who taught me how to stay focused on the research process. The breadth and depth of her knowledge and experience was invaluable as I moved through the design and implementation phases of a research study. Meg always encouraged me to set realistic deadlines especially during the difficult months that followed a painful surgery. I appreciated how Meg also graciously overlooked my inability to ever meet the unrealistic goals that I continually set. iii Pat Fox is a brilliant scholar and passionate expert on the elderly. As a member of my dissertation committee, I was fortunate to discuss the unfolding of my findings with Pat while at the same time, absorbing his energy and benefiting from his expansive view of the world. Meetings with Pat always left me energized and feeling that my research was revealing something very interesting and very significant. I was also fortunate to be a student of Janet Shim, a medical sociologist. Janet guided me towards shifting the lens through which I view health care and explore the lens of different theoretical frameworks. Janet‟s comprehensive critiques of my writing provided insights and tools with which I was able to expand my thinking. I especially appreciated meeting with Janet and talking about work, line by line. Janet encouraged me never to compromise depth with breath. When I met Paul Varosy at the San Francisco VA, I had more ideas than actual knowledge about the topic I had chosen for dissertation study. Thank goodness Paul was willing to support my steep learning curve. Paul has since introduced me to a network of researchers with similar interests for future collaboration. I will always remember the honor of being Paul‟s first Ph.D. nursing student mentee and his philosophy of giving back to the profession that is dedicated to providing research based care. I wish to acknowledge Michele Pato for her overwhelming confidence that I could attain a Ph.D. I also want to acknowledge the University of California San Francisco School of Nursing faculty and administrators because they generously enriched my experience of pursing a doctoral degree. As a transplant from a small upstate N.Y. community, I have had the privilege to learn from, and with, an incredibly brilliant and generous group of colleagues during the past five years, some of which I now cherish as iv lifelong friends. Thus, the list of individuals significantly impacted on the completion of this dissertation is extensive. Most importantly, I would like to thank my husband, my grown children, my mother, brother, three sisters, and my husband‟s elderly aunts, for hanging in there with me as I worked very hard to realize my lifelong dream. It was hard for all of us to preserve through the sacrifices of being separated by 3,000 miles for weeks and sometimes months at a time. And now, as I am finally crossing the finish line, it has become increasingly clear that I‟m not alone - my entire family is crossing it with me and we are all so proud that a member of our family has received her Ph.D. v LIVING WITH AN IMPLANTABLE CARDIOVERTER DEFIBRILLATOR (ICD) OLDER ADULTS TELL THEIR STORY Cindy A. Wojtecki ABSTRACT Sudden cardiac death is an unanticipated event, resulting from a cardiac rhythm disturbance. The best option for reducing risk and improving survival in high risk populations is the implantable cardioverter defibrillator (ICD). More individuals are receiving and living with ICDs at advanced ages and for longer periods. Yet, scant research has studied the perspective of individuals who are dealing with the implanted technology while also managing aspects of advancing age in a community setting. Using qualitative grounded theory methodology, the question of how an ICD affects the daily life of persons living with an ICD was explored. Human subjects‟ approval was obtained from the sponsoring university‟s human subjects committee and approval from the recruitment site was received before the study was started. Twenty- four older adults (≥65) who had lived with an ICD from two to 19 years were recruited from the device clinic of a tertiary care hospital. Data collection consisted of interviews that lasted 30-90 minutes and were conducted with a semi-structured interview guide. Data collection and analysis occurred in alternating sequences as initially described by Glaser and Strauss (1967) and further informed by Charmaz (2006) and Clarke (2005). The researcher transcribed verbatim and then checked transcriptions with audio recordings. Initial open coding examined minute sections of text followed by axial and selective coding in order to determine salient themes and properties that emerged from vi the data. Data was also collected in the form of analytic and self-reflective memos and positional maps. Theoretical and methodological notes were maintained regarding decisions made during the process. Study data revealed, the core process of “Living in Partnership” that can be characterized by three phases: Entering into a Partnership, Managing the Partnership, and Contemplating or Not Contemplating Dissolving the Partnership. The findings provided insights into the ways older adults come to understand the ICD in the context of their daily lives and serve to inform practitioners involved in their care. Further research focusing on personal meaning and impact is needed to plan for situations along the continuum of living with an ICD and dealing with advancing age. vii TABLE OF CONTENTS Table of Contents ……………………………………………………………………….viii List of Tables and Figures………………………………………………………………..xi CHAPTER ONE Introduction Preface: Getting to the Heart of the Matter……………………………………………….1 Problem Statement and Rational………………………………………………………….7 Study Aim ……………………………………………………………………………….10 Organization of Chapters………………………………………………………………...11 Background……………………………………………………………………………....13 Incidence of SCD ………………………………………………………………..13 Sudden Onset of Symptom……………………………………………....13 Paths Leading to SCD....…………………………………………………14 ICD: Standard Treatment for SCD ……………………………………………...15 Expanding Technologies and Indications ……………………………….15 Improvements in Surgical Insertion Approach ………………………….16 Evolution of Programming Capabilities…...…………………………….16 Expansion of Selection Criteria………………………………………….17 Randomized Control Trials (RCTs) ……………………………..18 Secondary Prevention Studies …………………………..18 Primary Prevention Studies ……………………………..19 Individuals age ≥65 years with an ICD………………………………….23 Chapter Summary.………………………………………………………24 CHAPTER TWO Synthesis of the Literature Earliest Studies ……………………………………………………………….….25 Impact on Quality of Life………………………………………………………..32 Impact of Chronic Medical Conditions….……………………………………….38 Chapter Summary and Areas for Further Study…………………………………39 viii CHAPTER THREE Theoretical Framework Uncertainty in Illness (Mishel)…………..………………………………………42 Development of Mishel‟s Uncertainty in Illness Scales (1981).………...43 Re-Conceptualization of Uncertainty in Illness (Mishel, 1990)…………56 Utilization of Mishel‟s Uncertainty in Illness Theories …………………57 Concept Analysis Uncertainty in Illness Theories (McCormick, 2002)…62 Other Models of Uncertainty..…………………………………………...63 Symbolic Interactionism…………………………………………………………65 Chapter Summary………………………………………………………………..67 CHAPTER FOUR Methods Qualitative Design ………………………………………………………………68 Study Sample ……………………………………………………………………68 Inclusion/Exclusion Criteria …………………………………………………….68 Recruitment Procedure ………………………………………………………….68 Data Collection Process …………………………………………………………69 Pilot Study ……………………………………………………………………….69 Dissertation Study………………………………………………………..74 Analysis of Study Data…………………………………………..………………75 Establishing Qualitative Research Integrity……………………………………..76 Consent Process and Documentation…………………………………….77 Maintaining Confidentiality and Privacy .……………………………….78 Financial Considerations..………………………………………………..78 Chapter Summary………………………………………………………………..79 CHAPTER FIVE Results Characteristics of Study Participants…………………………………………….80 Entering into the Partnership – Phase One...……….....……………………...83 ix Impact of Medical Environment…………………………………………84 Impact of Medical Relationship………………………………………….86