Children as Caregivers Children as Caregivers t The Rutgers Series in Childhood Studies The Rutgers Series in Childhood Studies is dedicated to increasing our under- standing of children and childhoods throughout the world, reflecting a perspec- tive that highlights cultural dimensions of the human experience. The books in this series are intended for students, scholars, practitioners, and those who formu- late policies that affect children’s everyday lives and futures. Edited by Myra Bluebond-L angner, Board of Governors Professor of Anthropol- ogy, Rutgers University, and True Colours Chair in Palliative Care for Children and Young People, University College London, Institute of Child Health Advisory Board Perri Klass, New York University Jill Korbin, Case Western Reserve University Bambi Schieffelin, New York University Enid Schildkraut, American Museum of Natural History and Museum for African Art For a list of all the titles in the series, please see the last page of the book. Children as Caregivers t The Global Fight against Tuberculosis and HIV in Zambia Jean Hunleth Rutgers University Press New Brunswick, Camden, and Newark, New Jersey, and London Library of Congress Cataloging- in- Publication Data Names: Hunleth, Jean, 1976– author. Title: Children as caregivers : the global fight against tuberculosis and HIV in Zambia / Jean Hunleth. Other titles: Rutgers series in childhood studies. Description: New Brunswick, New Jersey : Rutgers University Press, 2017. | Series: Rutgers series in childhood studies Identifiers: LCCN 2016032166| ISBN 9780813588049 (hardcover : alk. paper) | ISBN 9780813588032 (pbk. : alk. paper) | ISBN 9780813588056 (e- book (epub)) | ISBN 9780813588063 (e- book (web pdf)) Subjects: LCSH: Child caregivers— Zambia. | AIDS (Disease)— Patients— Home care—Z ambia. | HIV- positive persons—H ome care—Z ambia. | Tuberculosis— Patients— Home care— Zambia. Classification: LCC HQ759.67 .H86 2017 | DDC 362.1096894— dc23 LC record available at https://lccn.loc.gov/2016032166 A British Cataloging- in- Publication record for this book is available from the British Library. Copyright © 2017 by Jean Hunleth All rights reserved No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, or by any information storage and retrieval system, without written permission from the publisher. Please contact Rutgers University Press, 106 Somerset Street, New Brunswick, NJ 08901. The only exception to this prohibition is “fair use” as defined by U.S. copyright law. ∞ The paper used in this publication meets the requirements of the American National Standard for Information Sciences—P ermanence of Paper for Printed Library Materials, ANSI Z39.48– 1992. www.rutgersuniversitypress.org Manufactured in the United States of America For my parents, Frank and Mary Ann Contents Acknowledgments ix Introduction 1 1 Growing Up in George 19 2 Residence and Relationships 47 3 Between Silence and Disclosure 79 4 Following the Medicine 101 5 Care by Women and Children 125 6 Children and Global Health 145 Postscript: Childhood Tuberculosis 157 Notes 161 References 173 Index 183 vii Acknowledgments Children as Caregivers is based on research I carried out in Lusaka during a time that spanned nearly ten years (2005, 2006, 2007 to 2008, and 2014). However, the ideas for the research took root much earlier when I was a Peace Corps volun- teer in Eastern Province and then Central Province, Zambia (1999– 2002). As a water sanitation volunteer in the village of Kapichila, near Lundazi, I was able to witness many things children accomplished for their families, and also the unac- knowledged work that children put into global health projects. I thank Maxwell Banda and Anya Gondwe for opening their home to me and for putting their grandchildren in charge of introducing me to village life. Tikali, Regina, Suzgo, and Mattress taught me many lessons about children’s creativity and the diver- sity of childhood experiences. I continue to carry these lessons throughout my career. I have incurred many debts since starting the project that led to this book. I am beyond grateful for my longtime mentor, Karen Tranberg Hansen, whose deep knowledge of Africanist scholarship and her decades of research in Lusaka provided the foundation for my own work. Helen Schwartzman introduced me to the anthropology of childhood and pushed me to think creatively and critically about research with children. I thank both Karen and Helen for their unwaver- ing support and the countless hours they have spent mentoring me through the years. I have benefited from the mentorship of so many other people, particularly Edward Fischer, Bill Leonard, Rebecca Wurtz, Caroline Bledsoe, Virginia Bond, Cathy Zimmerman, Brad Stoner, and Aimee James, who have all encouraged me, in different ways, to weave together my interests in anthropology and public health. I have many people to thank in Zambia. My research affiliation with the Zam- bia AIDS Related Tuberculosis project (ZAMBART) proved vital, both when I was in Zambia and also back in the United States. Virginia Bond, in particular, ix x Acknowledgments assisted me in many ways, through pulling me into ZAMBART’s projects, help- ing me seek research permissions, and being a wonderful interlocutor. Many other researchers and staff at ZAMBART, including Helen Ayles, Musonda Sim- winga, Mutale Chileshe Chibangula, Ab Schaap, and Levi Chilikwela, supported me along the way. The ZAMBART staff who worked in George, the site of my research— especially Angela Konayuma, Annie Mwale, Foster Chileshe, Violet Zulu, Janet Chisaila, Isaac Mshanga, and Faustina Moyo—des erve a big zikomo for their help and advice, and for enduring my presence in their small workspace at George Health Centre. I am grateful for the assistance I received from the nurses and TB treatment supporters at George Health Centre. Floyd Makeka, a longtime TB treatment sup- porter, has been especially helpful, always encouraging my work and making me feel welcome, no matter how long my absences. Many other residents in George shared their homes and lives with me throughout the years and generously gave their time to this project, most especially the children and other household mem- bers who participated in my longest period of research during 2007 and 2008. I wish I could thank each of the participants by name, but the nature of this research has demanded that I use pseudonyms and change some identifying details to pro- tect their privacy. To acknowledge the time the children spent working with me, I have created an online gallery of the drawings they made as part of this research (see https://www.flickr.com/photos/childrenascaregivers/). It is the best way I know to follow eight-y ear- old Gift’s advice: “Ba Jeanie, take my drawings to Amer- ica and show people how good my work is.” My research assistants, Emily Banda and Olivious Moono, worked so hard on this project and were exceptional guides into life in George. Emily had moved to George in 1964 as a young child. When we met, she was, and she continues to be, deeply committed to a number of development and faith-b ased projects focused on TB, HIV and AIDS, and orphans and vulnerable children. Olivious was twenty years old when we first met in 2007. After graduating from secondary school, she moved to George to live with family members and volunteer in HIV counseling and testing at the government health clinic. As I write this, she is finishing a nurs- ing degree. Both Emily and Olivious took on my research project as their own. The fact that they saw my study as worthwhile has meant more to me than any valida- tion I received through the years. Their tremendous efforts and their question- ing and critique of my research methodologies and assumptions make this book a shared accomplishment. A number of friends in Zambia made my research possible through helping me with the logistics of traveling back and forth from the United States, and making Zambia feel like home each time I returned. Among these friends are Kelvyn Katongo, Steve Cole, Nsamwa Cole, Beth Jere, and Natalie Jackson. Ilse Mwansa, the former research affiliation officer at the Institute of Economic and Social Research at the University of Zambia, spent unhurried hours chatting Acknowledgments xi with me about research and life and strongly encouraged me to finish this book. Wendy Nicodemus Constantinou and Chris Constantinou have cooked meals for me, lent me their car, set up housing for me, and shown me generosity beyond what I could ever expect. This book would not have been possible without the funding and insti- tutional support I received for the research and writing, particularly from a National Science Foundation Graduate Research Fellowship, a fieldwork grant from the Wenner- Gren Foundation for Anthropological Research, a fellowship from the Fulbright Institute for International Education, a writing fellowship from the American Association of University Women, and a number of small research grants from the Program of African Studies and Friends of Anthro- pology at Northwestern University. I previously published parts of chapter 4 in Medical Anthropology Quarterly 27, no. 2. Several passages were also published in Childhood and have been reproduced by permission of SAGE Publications Ltd., London, Los Angeles, New Delhi, Singapore, and Washington, DC, from “Beyond On or With: Questioning Power Dynamics and Knowledge Produc- tion in ‘Child- Oriented’ Research Methodology,” Childhood 18, no. 1. I appreciate all of the support I received to finish this book since arriving at Washington University’s School of Medicine. I am especially grateful to Aimee James for believing in me, and this project, and for consistently encouraging me to finish. Graham Colditz, division chief of Public Health Sciences at Wash- ington University, went out of his way to carve out a position that gave me the institutional support I needed to complete the book.