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OverviewHaemophilia in Aotearoa New Zealand provides a richly detailed analysis of the experience of the bleeding disorder of haemophilia based on longterm ethnographic research. The chapters consider experiences of diagnosis; how parents, children, and adults care and integrate medical routines into family life; the creation of a gendered haemophilia; the use and ethical dilemmas of new technologies for treatment, testing and reproduction; and how individuals and the haemophilia community experienced the infected blood tragedy and its aftermath, which included extended and ultimately successful political struggles with the neoliberalising state. The authors reveal a complex interplay of cultural values and present a close-up view of the effects of health system reforms on lives and communities. While the book focuses on the local biology of haemophilia in Aotearoa New Zealand, the analysis allows for comparison with haemophilia elsewhere and with other chronic and genetic conditions. Full Product DetailsAuthor: Julie Park , Kathryn Scott , Deon York , Michael CarnahanPublisher: Taylor & Francis Ltd Imprint: Routledge Weight: 0.453kg ISBN: 9780367662349ISBN 10: 0367662345 Pages: 238 Publication Date: 30 September 2020 Audience: College/higher education , Tertiary & Higher Education Format: Paperback Publisher's Status: Active Availability: In Print  This item will be ordered in for you from one of our suppliers. Upon receipt, we will promptly dispatch it out to you. For in store availability, please contact us. Table of ContentsChapter 1 A bleeding nuisance in Aotearoa New Zealand; Chapter 2 ‘Pretty normal really’; Chapter 3 Blood and sacrifice: sex, gender, and haemophilia; Chapter 4 New networks and technologies of care: different haemophilias; Chapter 5 The shadow on our lives: hepatitis C in the haemophilia community; Chapter 6 Joint action: asserting rights, inclusion, and equity through voluntary association; Chapter 7 ConclusionsReviewsAuthor InformationJulie Park is Professor Emerita of Anthropology at the University of Auckland, New Zealand. Kathryn M. Scott works in social research and advocacy. She is an Honorary Research Fellow in Anthropology at the University of Auckland, New Zealand. Deon York works in the health sector. He is currently President of the Haemophilia Foundation of New Zealand (HFNZ) and on the Board of Directors of the World Federation of Hemophilia (WFH). Michael Carnahan has worked in health services management and is former President of the Haemophilia Foundation of New Zealand (HFNZ). Tab Content 6Author Website:Countries AvailableAll regions |
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