Square Pegs in Round Holes: An Ethnography Investigating the Relationship between Identity, Acquired Brain Injury and Rehabilitation. Timothy Banks School of Social Sciences Cardiff University Doctor of Philosophy 2016 Declaration This work has not been submitted in substance for any other degree or award at this or any other university or place of learning, nor is being submitted concurrently in candidature for any degree or other award. Signed ………………………………………………………….Tim Banks (candidate) Date …………………………30.03.17 STATEMENT 1 This thesis is being submitted in partial fulfilment of the requirements for the degree of PhD. Signed ………………………………………………………….Tim Banks (candidate) Date …………………………30.03.17 STATEMENT 2 This thesis is the result of my own independent work/investigation, except where otherwise stated. Other sources are acknowledged by giving explicit references. The views expressed are my own. Signed ………………………………………………………….Tim Banks (candidate) Date …………………………30.03.17 STATEMENT 3 I hereby give consent for my thesis, if accepted, to be available online in the University’s Open Access repository and for inter-library loan, and for the title and summary to be made available to outside organisations. Signed …………………………………………Tim Banks (candidate) Date …………………………30.03.17 i Acknowledgements None of the following would have been achievable without the kindness and willingness of the participants in the study. I am extremely grateful to the busy staff who not only gave me access to the field but were always respectful both to me and the research. Their openness and generosity ensured that the study could take place. I am also very thankful to the family members who were so generous in giving their time and for speaking so openly about what were undoubtedly such difficult topics at times. Most of all I want to thank the patients for allowing me time and access to a hugely private part of their lives. Their assistance with the project will never be forgotten. Secondly, I would like to acknowledge my supervisors, Joanna Latimer and Adam Hedgecoe. Their unwavering support, guidance and encouragement not just academically but pastorally, was far more than a student could have hoped for. I also want to acknowledge Gareth Williams, Sara McBride Stewart, Jenny Kitzinger and Claire Willson for their advice and suggestions in all manner of things throughout the study. They have all been a huge help in allowing me to develop ideas throughout. I wish to acknowledge my friend and colleague Gareth Thomas for his help as well as Rebecca Dimond, Ian Thomas and Jo Blake who provided support and a friendly, listening ear when it was needed. The support of many other postgraduate friends is something I will also always be hugely grateful for. Finally, I want to acknowledge the staff and service users of Head Start where I first encountered acquired brain injury. Their gamble on giving me a job back in 2006 sparked the huge interest and passion for the subject. I hope this thesis, in some small way, assists with the amazing work they do. ii Dedication I dedicate this thesis to my Uncle John. Without his incredible thoughtfulness and kind generosity, none of this would have been possible. May you rest in peace. I also dedicate this thesis to my parents, Frank and Pamela Banks who always believed in me. Finally, I dedicate this thesis to my family; my wonderful wife Carly who has always been there for me and my beautiful children, Arlo and Romy who inspire me every day. I hope to have done you all proud and I love you all very much. iii Abstract This thesis is an ethnography which explores acquired brain injury (ABI) survivor experiences of rehabilitation and compares these experiences with an analysis of discourses of ABI, as well as the social and organisational arrangements of rehabilitation services. Acquired brain injury interacts with the health care setting in complex ways. Many of the usual markers in which the individual might be interpreted as a patient such as assessing symptoms, the method of diagnosis, how the progress of the patient is viewed and the actual act of getting better are immensely complicated and, at times, even contradictory in this setting. Very often, these markers become negotiated. When the understanding of these different interactions between actors is contested, (e.g. when there is a disagreement between professional, family member and patient as to what a symptom might be or what a goal to work towards might be) this can become problematic. The ultimate objective is to use the study’s findings to inform ABI services and potentially enable better provision. Health care professionals work tirelessly in difficult environments, with increasing workloads and often with scarce resources. Research that specifically engages with the interactions within the health care setting will aid understanding of good practice and help prioritise the importance given to parts of the service which are currently under-represented. This research also aims to make a contribution to the sociology of biomedicine, healthcare organisation and work which investigates the body, identity and disability, particularly hidden disabilities. The practical implications of this research would inform decision makers of the extent to which identity work and participation underpins the success of the overall rehabilitation process. iv Contents Declaration ................................................................................................................................... i Acknowledgements...................................................................................................................... ii Dedication .................................................................................................................................. iii Abstract ...................................................................................................................................... iv Chapter One: Square Pegs in Round Holes .................................................................................... 1 Introduction - What’s the problem? ................................................................................................... 1 The scale of the problem .................................................................................................................... 4 This thesis ............................................................................................................................................ 8 Thesis outline ...................................................................................................................................... 9 Chapter Two: Positioning the research ........................................................................................... 9 Chapter Three: Methods ............................................................................................................... 10 Empirical chapters............................................................................................................................. 10 Chapter Four: When is a patient a patient, when is a professional professional? ....................... 11 Chapter Five: Medicalisation vs. De – Medicalisation .................................................................. 11 Chapter Seven: ABI: What does the patient think? ...................................................................... 12 Chapter Eight: Are they moving the goal posts or playing a different game? Patient experiences in the medical setting .................................................................................................................... 13 Chapter Nine: Conclusion/ Implications ....................................................................................... 13 Chapter Two: Positioning the Research ....................................................................................... 14 Introduction ...................................................................................................................................... 14 Parsons and the sick role .................................................................................................................. 15 Goffman, Garfinkel and performance ............................................................................................... 18 Latimer and ‘configuring the patient’ ............................................................................................... 21 Identity .............................................................................................................................................. 24 Healthcare organisation of illness in the career of the patient ........................................................ 27 Defining ‘Medicalisation’ .................................................................................................................. 29 ‘Doing patient’ .................................................................................................................................. 33 v Epistemological Foundations ............................................................................................................ 36 Conclusion ......................................................................................................................................... 37 Chapter Three: Methods ............................................................................................................ 38 Introduction .....................................................................................................................................