Heart Transplantation: Its Risks, the Expectations, and Cultural Negotiations in Japan Tomomatsu, Ikuko
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Heart transplantation: its risks, the expectations, and cultural negotiations in Japan Tomomatsu, Ikuko The copyright of this thesis rests with the author and no quotation from it or information derived from it may be published without the prior written consent of the author For additional information about this publication click this link. http://qmro.qmul.ac.uk/jspui/handle/123456789/3179 Information about this research object was correct at the time of download; we occasionally make corrections to records, please therefore check the published record when citing. For more information contact [email protected] Heart Transplantation: Its Risks, the Expectations, and Cultural Negotiations in Japan Ikuko Tomomatsu Thesis submitted for the degree of Doctor of Philosophy Centre for Primary Care and Public Health School of Medicine and Dentistry Queen Mary, University of London August 2011 1 Abstract The aim of this thesis is to facilitate an understanding of the experiences of Japanese heart transplant recipients in terms of how their identities are transformed. The thesis contributes to the discipline by providing an understanding of issues relating to the surgical procedure of heart transplants, the labelling of the recipients by the Japanese government and Japanese cultural factors. This is a qualitative study based on semi-structured interviews, which have been analysed thematically. The thesis sheds light on two major aspects of heart transplantation. One is the experiences of heart transplant recipients, from diagnosis through surgery to recovery. The other is the influence of Japanese cultural expectations about the body and the custom of reciprocal gift-exchange on recipients’ experiences. In so doing, this thesis argues that heart transplant recipients face an issue of identity crisis when making a decision to have transplant surgery, and that identity is reconstructed in the post-operational period. In this process, the recipients face social stigma as the result of having a heart transplant. Considering heart transplants as they are viewed by Japanese people in everyday life, the use of an organ for this medical purpose is in conflict with conventional attitudes towards the treatment of the dead body in Japan. In addition, it is difficult for the practice of altruistic organ donation to take root in the modern consumer culture of Japan, where gift-giving has become a quasi-commercial transaction. As a result of these phenomena, anonymous relationships between heart transplant recipients and donors are varied in terms of the gift relationship. It is key how Japanese heart transplant recipients repay their donor. The repayment strategies are impacted by cultural factors. 2 Table of Contents List of figures .................................................................................................................... 7 List of tables ...................................................................................................................... 7 List of abbreviations .......................................................................................................... 8 Acknowledgements ........................................................................................................... 9 1. Introduction ................................................................................................................. 10 2. Literature review ......................................................................................................... 17 2.1 Historical background of heart transplantation in Japan in a global context ......... 18 2.1.1 Introduction ..................................................................................................... 18 2.1.2 Historical background of heart transplantation in Japan from 1968 to 2009 .. 21 2.1.3 History of the Japanese heart transplant patients abroad ................................ 28 2.1.4 Public opinion polls ........................................................................................ 33 2.1.4.1 Yomiuri Newspaper opinion polls ............................................................ 34 2.1.4.2 Opinion poll surveys by the Japanese government .................................. 37 2.1.5 Conclusion ...................................................................................................... 42 2.2 Chronic illness, identity and body in relation to heart transplant recipients ......... 43 2.2.1 Introduction ..................................................................................................... 43 2.2.2 Chronic illness and identity ............................................................................. 45 2.2.3 ‘Shame’ in Japanese culture ............................................................................ 49 2.2.4 The notion of the body and ‘shame’ in Japanese culture ................................ 51 2.2.4.1 Notion of the body in Japan in discussions and studies of organ transplantation ...................................................................................................... 51 2.2.4.2 The dead body and ritual process ............................................................. 52 2.2.4.3 Attitude towards the live body ................................................................. 54 2.2.5 Gift-exchange in relation to heart transplantation in Japan ............................ 55 2.2.5.1 Heavy repayment ..................................................................................... 57 2.2.5.2 Live organ transplantation ........................................................................ 58 2.2.5.3 Cadaveric organ transplantation ............................................................... 59 2.2.6 Conclusion ...................................................................................................... 60 Chapter 3 Methods and methodologies ........................................................................... 62 3.1 Methods for data collection ................................................................................ 62 3.1.1 Overview of semi-structured interview technique .......................................... 64 3.1.2 Archival data search ........................................................................................ 65 3.1.3 Ethical issues ................................................................................................... 66 3.1.4 Selection criteria.............................................................................................. 67 3.1.5 Initial sampling ............................................................................................... 68 3.1.6 Establishing contacts for interviews from September 2008 to March 2010 ... 72 3 3.1.6.1Transplant Games and afterwards ............................................................. 75 3.1.6.2 The interviewees ...................................................................................... 77 3.1.6.3 Interview format ....................................................................................... 79 3.2 Data analysis .......................................................................................................... 80 3.2.1 Data management ............................................................................................ 80 3.2.2 Thematic analysis ............................................................................................ 81 3.3 Validity .................................................................................................................. 89 Chapter 4 The pre-operation period of transplant recipients .......................................... 90 4.1 Introduction ........................................................................................................... 90 4.2 Statistical perspective concerning heart transplant recipients in Japan ................. 92 4.3 Patients’ initial responses to a heart transplant diagnosis...................................... 96 4.4 Patients’ relationship with ‘the Own’ and ‘the Wise’ ......................................... 105 4.5 Responses of ‘the Wise’ to the decision to have a heart transplant ..................... 109 4.6 Recipients abroad and the fund-raising process .................................................. 113 4.7 Identities of patients with implanted VAD .......................................................... 117 4.8 The moment of being informed that a heart transplant can occur ....................... 120 4.9 Conclusion ........................................................................................................... 123 Chapter 5 Experiences after heart transplant surgery ................................................... 125 5.1 Introduction ......................................................................................................... 125 5.2 The experiences of returning to work, school or community activities in society: experiencing a new body condition with a transplanted heart ................................... 127 5.2.1 Experience of having a transplanted heart .................................................... 127 5.2.2 Hospitalisation after heart transplants ........................................................... 128 5.2.3 The process of returning to everyday life ..................................................... 131 5.2.4 The emotional challenge of accepting a transplanted heart .......................... 133 5.2.5 Communication with ‘the Own’ and ‘the Wise’ ..........................................