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University of Bath PHD Moving beyond the 'self' in self-management : the role of sport in facilitating transplant recipients' social networks Bescoby, Carl Award date: 2021 Awarding institution: University of Bath Link to publication Alternative formats If you require this document in an alternative format, please contact: [email protected] General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. • Users may download and print one copy of any publication from the public portal for the purpose of private study or research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal ? Take down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim. Download date: 10. Oct. 2021 University of Bath PHD Moving beyond the 'self' in self-management : the role of sport in facilitating transplant recipients' social networks Bescoby, Carl Award date: 2021 Awarding institution: University of Bath Link to publication Alternative formats If you require this document in an alternative format, please contact: [email protected] General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. • Users may download and print one copy of any publication from the public portal for the purpose of private study or research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal ? Take down policy If you believe that this document breaches copyright please contact us providing details, and we will remove access to the work immediately and investigate your claim. Download date: 03. Jun. 2021 MOVING BEYOND THE ‘SELF’ IN SELF-MANAGEMENT: THE ROLE OF SPORT IN FACILITATING TRANSPLANT RECIPIENTS’ SOCIAL NETWORKS Carl Bescoby A thesis submitted for the degree of Doctor of Philosophy University of Bath Department for Health October 2020 i COPYRIGHT NOTICE Attention is drawn to the fact that copyright of this thesis rests with the author. A copy of this thesis has been supplied on condition that anyone who consults it is understood to recognise that its copyright rests with the author and that they must not copy it or use material from it except as permitted by law or with the consent of the author. This thesis may be made available for consultation within the University Library and may be photocopied or lent to other libraries for the purposes of consultation. ii DECLARATION OF AUTHORSHIP I am the author of this thesis, and the work described therein was carried out by myself personally. iii TABLE OF CONTENTS ACKNOWLEDGEMENTS .................................................................................................. ix ABSTRACT ........................................................................................................................... x CHAPTER 1: INTRODUCTION ........................................................................................... 1 1.1 Background ...................................................................................................................... 2 1.2 Aims and research questions ............................................................................................ 6 1.3 Structure of the thesis ....................................................................................................... 7 CHAPTER 2: LITERATURE REVIEW .............................................................................. 9 2.1 Introduction .................................................................................................................... 10 2.2 The ‘self’-management of chronic illness for transplant recipients ............................... 10 2.3 The wider social context of living with a transplant and the role of others ................... 15 2.4 Living with an organ transplant and the transformation of the ‘self’ ............................ 22 2.5 Negotiating chronic illness through sport, exercise, and physical activity .................... 29 2.6 The role of the Transplant Games as a psychosocial self-management tool ................. 33 2.7 Summary ........................................................................................................................ 38 CHAPTER 3: METHODOLOGY AND METHODS ........................................................ 39 3.1 Introduction .................................................................................................................... 40 3.2 Methodological approach ............................................................................................... 40 3.3 Methods .......................................................................................................................... 48 3.4 Validity of the study and my role as the researcher ....................................................... 70 3.5 Ethical considerations .................................................................................................... 75 3.6 Summary ........................................................................................................................ 76 CHAPTER 4: CHARACTERISTICS OF ILLNESS SELF-MANAGEMENT NETWORKS .......................................................................................................................... 78 4.1 Introduction .................................................................................................................... 79 4.2 Size of participants’ illness self-management networks ................................................ 79 iv 4.3 Types of network members and support within participants’ illness self-management networks ............................................................................................................................... 83 4.4 Network types ................................................................................................................ 86 4.5 Summary ...................................................................................................................... 100 CHAPTER 5: LONGITUDINAL CHANGES IN ILLNESS SELF-MANAGEMENT NETWORKS ........................................................................................................................ 101 5.1 Introduction .................................................................................................................. 102 5.2 Regions ......................................................................................................................... 102 5.3 Centres .......................................................................................................................... 108 5.4 Density ......................................................................................................................... 113 5.5 Interfaces ...................................................................................................................... 118 5.6 Infrastructure ................................................................................................................ 123 5.7 Summary ...................................................................................................................... 126 CHAPTER 6: EXPERIENTIAL ASPECTS OF ILLNESS SELF-MANAGEMENT NETWORKS ........................................................................................................................ 127 6.1 Introduction .................................................................................................................. 128 6.2 Close tie anxiety ........................................................................................................... 128 6.3 Automatic propinquity ................................................................................................. 133 6.4 Negotiating transliminality through sport .................................................................... 138 6.5 Gratitude, survivors’ guilt, and obligation to pay it forward ....................................... 144 6.6 Summary ...................................................................................................................... 149 CHAPTER 7: LONGITUDINAL CHANGES IN THE EXPERIENTIAL ASPECTS OF ILLNESS SELF-MANAGEMENT NETWORKS............................................................ 150 7.1 Introduction .................................................................................................................. 151 7.2 Case study 1- Lauren: ‘There needs to be a boundary between mum and I’ ............... 154 7.3 Case study 2- Joseph: ‘We are all in it together, it’s like a whole new circle’ ............ 158 7.4 Case study 3- Daniel: ‘Becoming a transplant athlete is like becoming an elite warrior’ ............................................................................................................................................ 162 v 7.5