Culture, Healing Practice Pluralism and Living with Inflammatory Bowel Disease _____________________________________________________________________ Lynn Philipp Submitted in accordance with the requirements for the degree of Doctor of Philosophy The University of Leeds School of Healthcare April 2012 _____________________________________________________________________ The candidate confirms that the work submitted is her own and that appropriate credit has been given where reference has been made to the work of others. This copy has been supplied on the understanding that it is copyright material and that no quotation from the thesis may be published without proper acknowledgement. The right of Lynn Philipp to be identified as Author of this work has been asserted by her in accordance with the Copyright, Designs and Patents Act 1988. © 2012 The University of Leeds and Lynn Philipp Acknowledgements During the last two weeks of writing up my thesis, I realised I would be submitting it almost exactly a year to the date my father passed away after he had suffered 40 years with Inflammatory Bowel Disease. I think he would have liked to hear me over the phone telling him that I had finally finished this marathon of over six years. Throughout my life, in particular this PhD experience, his advice, sense of humour and belief in me has kept me going. Watching and caring for him during his life was an inspiration for me to do this research in the first place. Nonetheless, it was the participants in this study who allowed me to listen to their stories that made me realise that minimising suffering and finding contentment are key to coping with long-standing illness. Without their knowledge and courage to re-live sometimes unpleasant memories, towards what they said they had hoped might help other people, this research would never have happened. So it is my pleasure to have the opportunity to express my thanks to them. I would like to thank all the gatekeepers, practitioners and friends who helped me with recruiting participants to my study as this was particularly difficult given that few IBD sufferers use non-medical treatments as their main source of care. I owe a very big thanks to my supervisors, Professor Andrew Long, Dr. Rebecca Hawkins, and Professor Kate Thomas and for their continual support throughout this endeavour with guidance, constructive criticism, kindness and exorbitant amounts of patience. I have learnt so much from all of you and your unwavering determination to get me to the finish line that you will remain a very big part of my life experience. In addition, I am grateful to Ruth Allcroft for her incredibly generous assistance and knowledgeable skill with helping me format my thesis; I am so happy with the way it looks, thank you so much Ruth for your kindness and time. I would like to thank the University of Leeds School of Healthcare for the 3-year PhD bursary they granted me as well as all the individuals who contributed to the numerous times I needed suspensions and extensions due mostly to my or my father‟s ill health. It is very unlikely that I will do a PhD again so I appreciate the opportunity of a lifetime you have given me. To my family, in particular, my sister Johanna, whose persistent, positive encouragement throughout my PhD has been uplifting in times of great need. Thank you Joe for sacrificing so much of your time and energy from your family life as well as sharing your good will and sunshine with me. Merci, Houssem d'avoir rendu plus facile pour Joe de m'aider avec mon travail. Thank you Silvio-Saif for being your sweet self and putting a smile on my face every time I think of you; it has helped in many dark moments. Thank you mama for your kindness, generosity and wonderful knowledge of English in proof-reading my thesis. Thank you to all my friends who have cheered me up and given me pep talks when I needed to keep going. Lastly and most importantly, thank you Rene for being the love of my life and my „rock‟ throughout thick and thin with your precious and wonderful sense of humour as well as supporting me through my illness and staying strong and patient. I am so glad you exist and that I had the chance to share my life with you. i Abstract Few studies exist on sufferers‟ perspectives of living with Inflammatory Bowel Disease (IBD) and on cultural influences of choices of alternative health practices, including Traditional, Complementary and/or Alternative Medicine (TCAM). This research explores how and why cultural influences affect how IBD sufferers look after themselves with particular healing practices, including TCAM. The research was underpinned by a conceptual framework of the cultural construction of illness and healing, developed by drawing on existing literature from medical anthropology and sociology. The empirical phase of the study utilised a qualitative approach, involving eight participants. Two interviews were conducted with each participant; each was asked to complete a written diary for at least a month. Data was analysed using an inductive method guided by the conceptual framework and its four components: cultural influences; perspectives of Self; perspectives of illness and healing; and, healing practice pluralism. Half of the participants (5 female, 3 male, aged between 23 and 72 years) were medically diagnosed with Ulcerative Colitis (UC) and the others with Crohn‟s Disease (CD). Insight is provided into the diverse approaches of how sufferers live with IBD and two key treatment decision points. The cross-case analysis identified eight key factors directly or indirectly guiding participants towards choosing non-medical healing practices, and enumerated a range of preventive and curative healing practices that participants used in relation to different parts of the Self. Throughout their living with IBD, there is an on-going re-evaluation of the Self (personal preferences) in relation to self-management of illness. The research demonstrates the diverse ways of living with IBD, use of multiple preventive and curative healing practices and reinforces the value and strength of the conceptual framework. This study may prove useful in providing an explanatory model for other long-standing illness research as well as the combining of various healing practices in the context of healing practice pluralism. ii Contents CHAPTER ONE: Introducing the Research ................................................................................ 1 1.1 Overview ................................................................................................................. 1 1.2 What is IBD? ........................................................................................................... 1 1.3 Rationale for the PhD Study .................................................................................... 3 1.4 Focus of the Thesis ................................................................................................. 4 1.5 Overview of the Structure of the Thesis ................................................................... 5 1.6 Terminology ............................................................................................................ 6 CHAPTER TWO: PERSPECTIVES OF IBD – A COMPARISON OF HEALING PRACTICES ........... 10 2.1 Medical Perspectives of IBD ................................................................................. 10 2.1.1 Symptoms and Signs of IBD ................................................................................... 11 2.1.2 Medical Diagnosis of IBD ........................................................................................ 15 2.1.3 Treatment of IBD ..................................................................................................... 22 2.1.4 Summary of Medical Approaches to IBD ................................................................ 27 2.2 Perspectives of IBD in Chinese Medicine .............................................................. 27 2.2.1 Foundations of CM .................................................................................................. 28 2.2.2 Symptoms, Signs and Manifestations of IBD.......................................................... 34 2.2.3 CM Diagnosis of IBD Sufferers ............................................................................... 38 2.2.4 Treatment of IBD in CM .......................................................................................... 46 2.2.5 Summary on CM Approach to IBD.......................................................................... 50 2.3 Comparing the Medicine and CM Practice for IBD ................................................ 50 2.4 Conclusion ............................................................................................................ 51 CHAPTER THREE: CULTURAL CONSTRUCTION OF ILLNESS AND HEALING .......................... 52 3.1 Literature Search .................................................................................................. 53 3.1.1 Identifying Core „Cultural‟ Concepts ....................................................................... 53 3.1.2 Gathering Information ............................................................................................. 53 3.1.3 Cultural rather than psychological focus ................................................................. 54 3.2 Refining Concepts and Constructing a Framework ............................................... 55 3.2.1 What is „Culture‟? ...................................................................................................