i A Focused Ethnography of Iranian Canadian Women’s Experiences of Diabetes by Zahra Komeilian A thesis submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Faculty of Nursing University of Alberta © Zahra Komeilian, 2016 ii ABSTRACT Living with diabetes is challenging. Achieving optimal blood sugar balance involves major lifestyle choices and changes that can be difficult to sustain over time. When a woman with diabetes immigrates to a new country with very different social and cultural customs, religion, values, norms, and expectations, effective diabetes self-care becomes even more complex. Despite a growing number of Iranian immigrants in Canada, there is a paucity of empirical research on how Iranian Canadian women integrate their diabetes with their original and new cultural and social habits. The purpose of this qualitative focused ethnography study was to explore the experiences of Iranian Canadian women living with type II diabetes. Transition Theory and Shifting Perspective Model formed the study’s conceptual framework to explore and understand the nature, conditions, and processes of these women’s health-illness transitions associated with diabetes and how immigration influenced their diabetes transitions. 15 women were recruited using purposive and snowball sampling at a local Iranian community center in a large Western Canadian city. Most women were aged 42 to 48 years and were diagnosed 3–17 years prior to my study, the majority being diagnosed with diabetes in Iran. They arrived in Canada 3-25 years ago. Four women were fluent in English and the rest understood English to some degree. Data collection consisted of 21 individual semi-structured interviews conducted in Farsi. Interviews explored their life journeys in learning to live with diabetes and how their culture, social context, religion and immigration experiences influenced this journey. Six participants were interviewed twice to verify the researcher’s emerging analysis. Data analysis occurred concurrently with data collection. The analytic approach employed constant comparison, including open and in vivo coding, categorizing, identifying themes and writing iii memos. Verification strategies built into the inquiry process ensured research strategies adhered to principles of inductive qualitative inquiry and the results were trustworthy. Experiences of having diabetes are contextualized by aspects of illness identity, socio- cultural and religious commitments and practices and immigration journeys for the women in my study. Iranian culture was intertwined with Islamic beliefs that impact diabetes self-care management directly and indirectly as women selectively chose which cultural and social customs to retain or adopt. Each woman had a unique transition trajectory in diabetes, but there were some common phases: 1) “Dark days of diagnosis” started with the reactions to diagnosis and included a search for meaning and cause; 2) “Struggling to live with diabetes” reflected each woman’s personal journey as she learned how to integrate diabetes into daily life and was faced with challenges and choices to attend to diabetes or adhere to transitional cultural, social, family norms and expectations; and 3) “Recognizing their life road with diabetes” which included two sub themes of experiencing diabetes as “Life as a bumpy road” and “Life as an uphill battle.” These phases were not linear, but cyclical and often repetitive. Some women were stuck in experiencing life as an uphill battle and they struggled to meet their diabetes needs within their current roles and commitments. Their socio-cultural and religious backgrounds and immigration journeys strongly shaped how they experienced their diabetes journey, lifestyle behavior options, relationships with others, their perceptions, interpretations, and self-management behaviors. For some women their beliefs led to more passive behaviors, while for others they were a source of power and motivation. Traditional roles within the family and the Iranian immigrant community were important in either supporting their self-care or functioning as a justification for being unable to manage their diabetes effectively. iv This study provides significant insight into the realities of a largely hidden diabetic population. Clinically, religious, cultural and social norms and values must be considered in self- care planning. Involving family and individual socio-cultural and religious commitments in education and support strategies will enhance the quality of care and the interaction and trust between Iranian Canadian immigrants and the health care system. The findings also have implications for interventions incorporating a role for the support group within the diabetes clinic and Iranian community. This role would not only address issues of socio-cultural and religious support in diabetes self-care, but would also serve as a means to educate individuals with diabetes, their families, and the community about improving diabetes management. v PREFACE This thesis is an original work by Zahra Komeilian. The research project, of which this thesis is a part, received research ethics approval from the University of Alberta Research Ethics Board, Project Name “A Focused Ethnography of Iranian Canadian Women’s Experiences of Diabetes”, No. MS6_Pro00016340 Date: 26/3/2013 vi DEDICATION In the name of Allah, the Gracious, the Merciful. Praise be to Allah, Lord of all the worlds. The Most Gracious, The Most Merciful, Master of the Day of Judgment. It is You we worship, and upon You we call for help Guide us to the straight path The path of those You have blessed, not of those against whom there is anger, nor of those who are misguided. Quran (The opening) “We shall not cease from exploration, and the end of all our exploring will be to arrive where we started and know the place for the first time.” -T.S. Eliot vii ACNOWLEDGEMENTS Though only my name appears on the cover of this dissertation, a great many people have contributed to its production. I owe my gratitude to all those people who have made this dissertation possible and because of whom my graduate experience has been one that I will cherish forever. It is difficult to overstate my sincere gratitude to my supervisors, Dr. Jude Spiers and Dr. Marion Allen, for their continuous support of my study and related research, for their patience, motivation, and immense knowledge. Their guidance helped me throughout the research and writing of this thesis. Dr. Spiers taught me how to question thoughts and express ideas. Her patience and support helped me overcome many crisis situations and finish this dissertation and Dr. Allen gave me the freedom to explore on my own and at the same time the guidance to recover when my steps faltered. I acknowledge that this thesis could not have been written without their sincere commitment. I have to give a special mention for the support given by Dr. Pauline Paul, Associate Dean of Graduate Studies at University of Alberta. I am grateful to my supervisory committee members, Dr. Pauline Paul and Dr. Maria Mayan, for their encouragement and practical advice. I am also thankful to them for reading my dissertation; commenting on my views and helping me understand and enrich my ideas. My special thanks go to Dr. Wendy Duggleby who chaired my examination and Dr. Solina Richter. I am also grateful to Dr. DeAnne K. Hilfinger Messias, who graciously agreed to be my external examiner. viii I gratefully thank the women who participated in this study for their time and keen interest in my work. Without their willingness to share their experiences, without their stories, none of this would have been accomplished. I would like to thank my husband, Dr. Reza Baradar Jalili, whose support allowed me to pursue this degree and who understands me best as a Ph.D. himself. His faith, full devotion, determination, and continuous support sustained me through many dark and difficult hours as I questioned my ability to complete this degree. I would also like to thank my kids (Saba and Nasim) for cheering me up and standing by me through the good times and bad all these years. The honor of fulfilling my doctoral education should also be shared with my parents, whose unfailing support was invaluable. May Allah accept this humble effort in pursuit of knowledge. Amen. ix TABLE OF CONTENTS CHAPTER 1 - INTRODUCTION ...................................................................................................1 Background ......................................................................................................................................1 The Conceptual Framework of the Study ........................................................................................3 Chronic Illness ................................................................................................................ 3 Self-Care Management ................................................................................................... 4 Culture............................................................................................................................. 4 Religion ........................................................................................................................... 5 Shifting Perspective Model ............................................................................................. 6 Transition .......................................................................................................................