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HIV and East Africa: Thirty Years in the Shadow of an Epidemic PDF

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HIV and East Africa By traeing the shadow of the epidemie over the last 30 years in Uganda and more broadly in the region, HIV and EastAfrica investigates the impact ofthe epidemie on people's lives and livelihoods, plaeing the epidemie within the eontext of the social, politieal and eeonomie ehanges that have oeeurred over the last three deeades. Whilst it inevitably touehes on loss and suffering, the message is also about managing the impact of an epidemie whieh has had a profound impact on many lives. When one looks for traees in southern Uganda, onee thought to be the epieentre ofthe epidemie, it is hard to see any lasting impact at a eommunity-wide level. Delve deeper and there are sears to be found among families and patterns of change whieh are a direet result ofthe epidemie. The book goes on to explore the effeet of improved treatment and eare on pereeptions of the epidemie and eoncludes by putting HIV into the eontext of other disease outbreaks, refleeting on what we ean learn from the history of other epidemies as weH as the last 30 years ofthe HIV epidemie. Janet Seeley has been aetively engaged in research on HIV and AIDS sinee the late 1980s, including fouryears withMRC in Uganda (1989-1993) when she was responsible for setting up social seienee research in the unit, the programme she returned to Uganda to head in 2008. She is eurrently Professor of International Development at the U niversity of East Anglia, UK. Routledge Studies in African Development Self-Determination and Secession in Africa The post-colonial state Edited by Redie Bereketeab Economic Growth and Development in Africa Understanding global trends and prospects Horman Chitonge African Youth and the Persistence of Marginalization Employment, politics and prospects for change Edited by Danielle Resnick and James Thurlow HIV and East Africa Thirty years in the shadow of an epidemic Janet Seeley HIV and East Africa Thirty years in the shadow of an epidemie Janet Seeley First published 2014 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN Simultaneously published in the USA and Canada by Routledge 7ll ThirdAvenue, NewYork, NY 10017 Routledge is an imprint ofthe Taylor & Francis Group, an informa business © 2014 Janet Seeley The right of Janet Seeley to be identified as author ofthis work has been asserted by her in aeeordanee with seetions 77 and 78 ofthe Copyright, Designs and Patents Aet 1988. All rights reserved. No part of this book may be reprinted or reprodueed or utilised in any form or by any eleetronie, meehanieal, or other means, now known or hereafter invented, including photoeopying and reeording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Produet or eorporate names may be trademarks or registered trademarks, and are used only for identifieation and explanation without intent to infringe. British Library Cataloguing in Publication Data A eatalogue reeord for this book is available from the British Library Library ofCongress Cataloging-in-Publication Data Seeley, Janet. HIV and East Afriea : thirty years in the shadow of an epidemie / Janet Seeley. p. em. - (Routledge explorations in development studies ; 8) Includes bibliographieal referenees and index. 1. AIDS (Disease) - Soeial aspeets - Afriea, East. 2. AIDS (Disease) - Soeial aspeets - Uganda. 3. HIV-positive persons - Afriea, East - Soeial eonditions. 4. HIV-positive persons - Uganda - Soeial eonditions. 5. Afriea, East - Soeial eonditions. 6. Uganda - Soeial eonditions - 1979- 7. Resilienee (Personality trait) - Afriea, East. 8. Resilienee (Personality trait) - Uganda. 9. Time - Soeiologieal aspeets. I. Title. II. Series: Routledge explorations in development studies ; 8. RA643.86.A353S44 2013 362. 1969792009676-de23 20 130 ll788 ISBN: 978-0-415-52449-0 (hbk) ISBN: 978-0-203-58997-7 (ebk) Typeset in Times by HWA Text and Data Management, London For Charlotte This page intentionally left blank Contents Preface IX Acknow ledgements Xl Abbreviations XV Map ofEast Africa XVll 1 The shadow of an epidemie: an introduetion 1 2 Leaming to live with HIV: the background to an epidemie 17 3 Loss and grief 39 4 Progress and growth 57 5 Crises and change 75 6 The changing epidemie: treatment and eare 93 7 Managing 10ss and forgetting the pain? 111 Bibliography 121 Index 145 This page intentionally left blank Preface International AIDS eonferenees have been held annually or biennially for the last twenty-eight years. Sinee 1989, and with the exception of one year, eaeh has been given a theme. In 1989 it was 'the seientifie and social challenge of AIDS'; in 2004 it was' Aeeess for all'; and in 2012, 'Turning the tide together'. These themes refleet the evolution of the epidemie in terms of how donors, seientists, researehers and aetivists have approaehed and responded to it. They also reveal the changing priorities that HIV and AIDS have presented in the last three deeades; priorities that initially refleeted extreme pessimism have more reeently signalled relative optimism ab out managing the eondition. International AIDS eonferenees are aeeompanied by upbeat declarations or mission statements, pledging, for example, the 'end of AIDS'. Such energy, exeitement and rhetorie ean sometimes seem rather remote from the day-to-day lives of those who live with HIV infeetion. Many ofthose whom I have known who have lived with or are living with HIV inhabit a very different world from that of the international eonferenees. My work in Uganda has taken me to both these worlds of HIY, and the idea for this book has grown from this experienee. In the early 1990s my notes and ease studies in Uganda reeorded what then seemed to be a statie and distressing pieture of bereavement and loss. But the epidemie did not end then; the trajeetory of an infeetion that seemed to engulf an entire region has shifted. As time has passed and experienee inereased, treatment, for some at least, has improved. My assoeiation with Uganda has given me an understanding ofthe ways in whiehHIVboth slots into and influenees individuals' lives, why some efforts to prevent the spread of infeetion may be more sueeessful than others, why eampaigns to get people onto anti-retroviral treatment do not always sueeeed, and that different groups in soeiety have differing perspeetives and priorities whieh influenee their responses to poliey. While HIV has an impact on people's lives, it does so against the broader historieal, soeial and eeonomie eontext in whieh they live.

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