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Haemophilia in Aotearoa New Zealand : more than a bleeding nuisance

Author: Julie Park
Publisher: Abingdon, Oxon ; New York, NY : Routledge, 2019. ©2019
Series: Routledge studies in health and medical anthropology.
Edition/Format:   eBook : Document : EnglishView all editions and formats
Summary:
Haemophilia 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  Read more...
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Genre/Form: Electronic books
Additional Physical Format: Print version:
Park, Julie, 1947-
Haemophilia in aotearoa New Zealand.
Milton Park, Abingdon, Oxon ; New York, NY : Routledge, 2019
(DLC) 2018045790
Material Type: Document, Internet resource
Document Type: Internet Resource, Computer File
All Authors / Contributors: Julie Park
ISBN: 0429026528 9780429026522 9780429649073 042964907X 9780429651717 0429651716 9780429646430 0429646437
OCLC Number: 1057243871
Description: 1 online resource (xx, 218 pages)
Contents: Cover; Half Title; Series Page; Title Page; Copyright Page; Dedication; Contents; List of figures and table; List of boxes; Abbreviations; Acknowledgments; Foreword by Jan-Willem André de la Porte; Foreword by Dr Elizabeth Berry; 1. A bleeding nuisance in Aotearoa New Zealand; The human experience of haemophilia: an introduction; Biogenetic haemophilias; The historical context of haemophilia in Aotearoa New Zealand; Living with haemophilia; Treatment for haemophilia; The view from now; The 'Bleeding nuisance' studies; Beginning the research; Research design; Research methods 1994-5 Update studiesReflections on research; Transformations in society and in health services; Health sector changes; Dividing care: haemophilia and the RHA system; A national health system, and more fragmentation; Organisation of the book; 2. 'Pretty normal really'; Different haemophilias: an introduction; Research narratives; Learning haemophilia; Medical condition or abuse; Mild haemophilia; Caring for a child with haemophilia; He's a boy first: not living haemophilia; Having treatments; Blood-borne infections; Inhibitors; Parents as liaison officers; Adults working and living with haemophilia Haemophilia and getting olderConclusion: local biology and different haemophilias; 3. Blood and sacrifice: Sex, gender, and haemophilia; Rugby: a key symbol; Striving to have 'a normal life'; Women in the haemophilia community: carriers and carers; Caring: 'I haven't been to medical school for seven years'; Carriers with haemophilia; Conclusion: gendered changes and different haemophilias; 4. New networks and technologies of care: Different haemophilias; The difference that time makes; Technologies for treatment; A history: from snake venom and peanuts to clotting factor concentrates Recombinant clotting factorOn demand and prophylaxis at home and elsewhere; Supply: health services as technology; Networks of collaborative care; Gene therapy; Technologies for testing; Testing for carriers; Testing the yet-to-be-born; Conclusion; 5. The shadow on our lives: Hepatitis C in the haemophilia community; Justin and hepatitis C: an introduction; HIV; Learning together about hepatitis C; Symptoms and their cause: an insidious effect; To tell or not to tell?; To treat or not to treat?; Treatment options and decisions for hepatitis C; Hepatitis C and social suffering ACC as a branch of the StateLocal biologies: haemophilia, HIV, and hepatitis C in international contexts; Conclusion; 6. Joint action: Asserting rights, inclusion, and equity through voluntary association; From rights to equity; Emergence of the Haemophilia Society; Viral politics; Working with government: lobbying and partnership 1983-90; Watchdog tactics in extraordinary times: contestation and lobbying 1990-2003; Suddenly we were on the outside of the tent; Will to Justice: demanding rights to fair compensation; From Society to Foundation; An active citizen approach
Series Title: Routledge studies in health and medical anthropology.
Responsibility: Julie Park, Kathryn M. Scott, Deon York, and Michael Carnahan.

Abstract:

Haemophilia 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.

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