Haemophilia in Aotearoa New Zealand : more than a bleeding nuisance / Julie Park, Kathryn M. Scott, Deon York, and Michael Carnahan.

Format:

Book

Author/Creator:

Park, Julie, 1947- author.

Contributor:

Park-Choi Fund for Anthropology Studies.

Taylor & Francis eBooks.

Series:

Routledge studies in health and medical anthropology

Language:

English

Subjects (All):

Hemophilia--New Zealand.

Hemophilia.

Hemophiliacs--New Zealand.

Hemophiliacs.

New Zealand.

Physical Description:

1 online resource (xx, 218 pages).

Place of Publication:

Abingdon, Oxon ; New York, NY : Routledge, 2019.

System Details:

text file

Biography/History:

Julie 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).

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

Notes:

Includes bibliographical references and index.

Electronic reproduction. London Available via World Wide Web.

Description based on online resource; title from digital title page (viewed on January 30, 2019).

Local Notes:

Acquired for the Penn Libraries with assistance from the Park-Choi Fund for Anthropology Studies.

Other Format:

Print version: Park, Julie, 1947- author. Haemophilia in aotearoa New Zealand

ISBN:

0429026528

9780429026522

9780429649073

042964907X

9780429651717

0429651716

9780429646430

0429646437

Publisher Number:

99979924791

Access Restriction:

Restricted for use by site license.