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TOWSON UNIVERSITY OFFICE OF GRADUATE STUDIES A PHENOMENOLOGICAL EXAMINATION OF THE CAREGIVING EXPERIENCE OF ELDERLY SPOUSAL CAREGIVERS by Christine Moghimi A Dissertation presented to the faculty of Towson University in partial fulfillment of the requirements for the degree Doctor of Science in Occupational Science Department of Occupational Therapy and Occupational Science Towson University Towson, Maryland 21252 (May 2012) ACKNOWLEDGEMENTS I would like to thank Dr. Regena Stevens-Ratchford for all of her help, patience and guidance in getting me through this incredible journey. I would also like to acknowledge all of the support and advice from my peers, faculty of the Occupational Therapy/Occupational Science program and the committee members. Lastly, I would like to acknowledge my dear family for their understanding and encouragement all along the way, and most importantly, for their unwavering belief that I could do this. ii ABSTRACT A Phenomenological Examination of the Caregiving Process in a Sample of Elderly Spousal Caregivers Christine Moghimi Problem Older adults with chronic illness often require extensive informal care. Informal care generally is provided by family members, and increasingly, elderly spouses. Providing care to a loved one has the potential to last for weeks, months, and in chronic illness management, even decades. The literature has shown that there can be great burden and stress in the occupation of spousal caregiving. The purpose of this study was to examine the caregiving process in a sample of informal elderly spousal caregivers caring for a chronically, medically ill spouse. In order for occupational therapists to assist elderly spouses in their caregiving occupation, they must have an in-depth knowledge and understanding of the caregiving experience. Methodology A qualitative phenomenological approach was utilized to provide an in-depth look at the elderly spousal caregiving process. Research questions in this study explored the culture, occupation, successful aging and occupational justice in elderly spousal caregiving. iii Data was collected from a purposive sampling of five elderly spousal caregivers through a series of four long interviews that were audio taped and then transcribed. Statements were transformed into clusters of meanings. The data analysis process transformed these clusters to make a general description of the experience for each participant including a textural description, a structural description and finally a textural- structural synthesis. Conclusion Four themes emerged from the data: the culture of elderly spousal caregiving is one of forced self-reliance; the occupation of elderly spousal caregiving centers around concern for safety; elderly spousal caregiving challenges one’s ability to age successfully and elderly spousal caregiving is an unjust occupation. Elderly spouses committed themselves to caregiving when their loved one needed help in the home. The caregiving occupation involved advocacy, multiple interactions with formal healthcare and challenges to physical and emotional capabilities. Elderly spouses learned through trial and error, were isolated and confined, and were often the sole provider of care. Clinical considerations included a population-based approach for occupational therapists with the intent of a triad approach to care: therapist, patient and caregiver. iv TABLE OF CONTENTS Chapter One: Introduction 1) Research Problem…………………………………………………………..1 2) Background.……………………………………………………………… .2 3) Purpose Statement.……………………………………………………… ...8 4) Importance of this Study……………………………………………… … .9 5) Research Questions……………………………………………………… ..9 Chapter Two: Literature Review 1) Introduction……………………………………………………………..…11 2) Framing the caregiving process in the context of occupational justice……12 a.) The model of human occupation…………………………………....14 b.) Social justice as a factor of occupational justice…………………....20 c.) Occupational perspectives of health……………………………… 25 d.) Health perspective of occupation…………………………………. 33 e.) Occupational justice…………………………………………………40 3) The theoretical foundations of caregiving………………………………… 54 a.) The culture of caregiving………………………………………… 54 b.) Caregiver burden and stress……………………………………… 66 c.) Assessments of caregiver burden and stress……………………… 72 d.) Caregiver rewards………………………………………………… 74 e.) Caregiving and aging well/Successful aging………………………77 v f.) Successful aging and chronic illness…………………………… 80 g.) Successful aging and caregiving……………………………,… 83 4) Literature Review Summary……………………………………………. 86 a.) Occupation of caregiving………………………………………, . 86 b.) Culture and caregiving………………………………………,… 87 c.) Occupational justice…………………………………………,… 88 d.) Successful aging…………………………………………,……… 89 Chapter Three: Methodology 1) Introduction…………………………………………………………… 90 2) Research Design and Rationale………………………………………… 92 a.) Qualitative Methodology……………………………………… 92 b.) Phenomenology: Background and procedures………………… 93 3) Setting…………………………………………………………,……… 97 4) Sampling Procedure…………………………………………………… 97 5) Participants…………………………………………………………,,,,… 98 6) Instrumentation………………………………………………………… 101 a.) Interview guide……………………………………………,…… 101 b.) The Moghimi Caregiving interview guide…………..………..... 102 c.) The Caregiving Demographic Questionnaire……………………. 103 7) Data Collection and Management……………………………………… 104 a.) Interview protocol…………………………………………… … 104 vi 8) Data Analysis………………………………………………………… 106 Chapter Four: Results 1) Introduction…………………………………………………………… 113 2) Theme 1. ……………………………………………………………….114 a.) A culture clash with formal healthcare……………………….. 114 b.) Lack of family involvement……………………………………. 117 c.) A culture of forced self-reliance: Other cultural beliefs and values in elderly spousal caregiving…………………………………….121 Loving obligation………………………………………………..121 Experiences of joy……………………………………………….123 Tradition of caring……………………………………………….124 3) Theme 2. ………………….……………………………………………126 a.) Concern for safety: Falls……………………………………… 127 b.) Concern for safety: Unsafe behavior…………………………....130 c.) Concern for safety: Other aspects of the occupation of caregiving…………………………………………………….. 132 Advocacy……………………………………………………….133 Flexibility and prioritization…………………………………….134 4) Theme 3.. ………………….…………………………………………....137 a.) Well-being: Utilizing resources……………………..…………. 138 b.) Well-being: Coping Strategies…………………..……………. 140 c.) Engagement with Life………………………………..………… 141 d.) Negative impact on health……………………………………… 142 vii. 5) Theme 4…………………………………………………….…….……143 a.) Training and education…………………..……….……………144 b.) Availability of resources……………………………………….146 c.) Occupational injustice: Occupational imbalance………………149 d.) Occupational injustice: Feeling overwhelmed…………………151 6) Conclusion…………………………………………………………… 155 Chapter Five: Discussion 1) Introduction……………………………………………………………156 2) Purpose Statement………………………………………………….…..156 3) Review of Methodology………………………………………….….…156 4) Summary of the Results………………………………………………..158 a.) Culture………………………………………………………….158 b.) Occupation……………………………………………………...158 c.) Successful aging…………………………………………….…..159 d.) Occupational justice………………………………………….…160 5) Discussion of the results………………………………………………..161 a.) Forced self-reliance……………………………………….….…161 b.) Concern over safety………………………………………….…164 c.) Challenged to age successfully…………………………………166 d.) An unjust occupation…………………………………………. 170 6) Conclusion……………………………………………………………...174 7) Clinical Implications….……………………………………………….. 175 viii. 8) Future Studies………………………………………………………….177 Appendices 178 1) Appendix A (Informed Consent Form)..………………………………179 2) Appendix B (IRB)………..……………………………………………180 3) Appendix C……………………………………………………………181 4) Appendix D……………………………………………………………182 5) Appendix E………………………………………………………….…183 6) Appendix F…………………………………………………………….187 References …………………………………………………………………………..190 CV ……………………………………………………………………………...205 ix 1 Chapter One Introduction Research problem The Rosalyn Carter Institute for Human Development states, “There are just four kinds of people in the world: those who have been caregivers; those who are caregivers; those who will be caregivers; and those who will need caregivers (Talley, 2004, p.13). Providing care to a loved one has the potential to last for weeks, months and in chronic illness management, even decades. The literature showed that there can be great burden and stress in the occupation of elderly spousal caregiving. Such burden and stress can be due to a variety of factors including: the complex and difficult care that needs to be provided; the caregiver’s advanced age and health status; the chronic condition of the care recipient; inadequate training and education on caregiving and the constant fear that caregivers can have over the safety and health of the care recipient. The presence of caregiver burden can be devastating and can negatively impact the health of both the care recipient and the caregiver (Elliot, 1998). Many recent clinical studies showed that long- term family caregivers are at high risk for sleep-deprivation, immune system deficiency, muscle and joint problems, depression, chronic anxiety, loss of concentration and premature death (Sheehy, 2010). 2 The family caregiving process can be described as a set of actions, routines and functions that bring about the act of caregiving. In chronic illness management the caregiving process usually begins with an acute episode and hospitalization and includes provision of services from both formal and informal caregivers. Formal caregivers are paid for their