Does living in a slum matter for HIV medication adherence? Examining adolescent behavior in Matero, Zambia by Suresh Subramanian Ph.D. University of Nebraska, Lincoln, 1992 Submitted to the Department of Urban Studies and Planning, in Partial Fulfillment for the Degree of Master of Science in Urban Studies at the Massachusetts Institute of Technology May 2020 © 2020 Suresh Subramanian. All Rights Reserved The author hereby grants to MIT the permission to reproduce and to distribute publicly paper and electronic copies of the thesis document in whole or in part in any medium now known or hereafter created. Signature of Author ………………………………………………………………………………………………… Department of Urban Studies and Planning, MIT May 18, 2020 Certified by ……………………………………………………………………………………………………………. Mariana Arcaya, Associate Professor of Urban Planning and Public Health Associate Department Head Department of Urban Studies and Planning Thesis Supervisor Accepted by ……………………………………………………………………………………………………………. Ceasar McDowell, Professor of Civic Design, Chair, MCP Committee Department of Urban Studies and Planning Thesis Supervisor Does living in a slum matter for HIV medication adherence? Examining adolescent behavior in Matero, Zambia By Suresh Subramanian Submitted to the Department of Urban Studies and Planning on May 18, 2020, in Partial Fulfillment for the Degree of Master of Science in Urban Studies at the MASSACHUSETTS INSTITUTE OF TECHNOLOGY Abstract Three decades into the HIV/AIDS epidemic, annual infection and mortality figures have been dropping rapidly, and there is a sense of an existential crisis averted. While the AIDS epidemic is coming under control among the broader population, it is growing among vulnerable populations, including the young. Deaths due to HIV have increased by 50% among adolescents, and HIV continues to be the number one cause of death among this cohort group in sub-Saharan Africa. Poor adherence to antiretroviral medication is to blame in large part for this situation. Paradoxically, this is happening in a public health environment where antiretroviral medication availability and distribution are increasingly unfettered, and guidelines for HIV testing and treatment are robust and comprehensive. What causes these youngsters, who understand the importance of being adherent to missing their life-saving medication? Rapid urbanization is transforming most parts of the developing world, and over half of Africa’s population now lives in cities. Almost all of this growth has been in slums. Slums in sub-Saharan Africa have a younger demographic, a higher HIV prevalence, and spatially present the most critical target for any efforts to address medication adherence among youth. Where previous studies on medication adherence among adolescents have focused on the patient, the caregivers, and medication-related barriers, this study examines if living in a slum neighborhood creates impediments to antiretroviral adherence. Through 42 semi-structured interviews conducted in a slum neighborhood in Lusaka, Zambia, this study uncovers ways in which the physical, environmental, social, and resource dimensions of the Matero compound may be impacting adolescent HIV medication adherence. The health of slum residents is one of the primary urban challenges for the coming decades. Successful health interventions may require a deeper understanding of life in slums and adopting both a slum-centered and a disease-centered approach. Thesis supervisors: Ceasar McDowell, Professor of Civic Design, DUSP, MIT Mariana Arcaya, Associate Professor of Urban Planning and Public Health, DUSP, MIT 2 Acknowledgments In the final analysis, it’s all about the questions. I want to express my gratitude to the Department of Urban Studies and Planning for welcoming me into the DUSP family and giving me a chance to pursue this thesis. There is no place quite like DUSP that welcomes people and their questions with such joy. To Professor Ceasar McDowell - my sincere thanks for your mentorship of two decades, your generous availability of time, and relentlessly pushing me to ask the right questions. To Professor Mariana Arcaya - a huge thanks for the partnership we built over the last year, for opening my eyes to Neighborhood Effects and for helping me bridge my questions in public health to urban studies. I came to MIT hoping to work with Professor McDowell and Professor Arcaya, and I am thrilled that I got the chance to do so. Thank you to my family for all our whimsical conversations, our countless debates, and for challenging me to bring my A-game to all our discussions. I would like to dedicate this thesis to the youth in sub-Saharan Africa living with HIV and working hard to maintain medication adherence. We, adults, owe you more, and I pray we don’t let you down. 3 Table of Contents Abstract ............................................................................................................................................................................... 2 Acknowledgments ............................................................................................................................................................ 3 Preface ................................................................................................................................................................................. 5 Chapter 1 ............................................................................................................................................................................ 8 The AIDS Epidemic .......................................................................................................................................................... 9 Youth Adherence to HIV Medication .............................................................................................................................. 10 Theories of Adherence ..................................................................................................................................................... 12 Sub-Saharan Africa and the Growth of Slums ................................................................................................................ 14 Slums in Lusaka, Zambia ................................................................................................................................................ 15 Slum Effects on Health .................................................................................................................................................... 15 Adherence Programs in Zambia ...................................................................................................................................... 17 Chapter 2 .......................................................................................................................................................................... 19 Research Question ........................................................................................................................................................... 19 Methodology .................................................................................................................................................................... 19 Study Design ............................................................................................................................................................... 19 Sampling .................................................................................................................................................................... 20 Data Collection ............................................................................................................................................................ 21 Field Observation ....................................................................................................................................................... 24 Data Analysis .............................................................................................................................................................. 25 Results and Discussion ................................................................................................................................................... 26 The Socio-Ecological Model .......................................................................................................................................27 Individual Factors ...................................................................................................................................................... 28 Interpersonal Factors ................................................................................................................................................. 31 Community Factors ................................................................................................................................................... 36 Structural Factors ...................................................................................................................................................... 39 Differences between youth from Matero and Kabulonga on Adherence ..................................................................... 49 How the Slum Neighborhood Appeared to Impact Adherence .................................................................................... 52 Thoughts on Methodology ............................................................................................................................................