Examining Adolescent Behavior in Matero, Zambia by Suresh

Does living in a slum matter for HIV medication adherence? Examining adolescent

behavior in Matero, Zambia

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

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

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.

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 ...... 60 Chapter 3 ...... 63 Conclusion ...... 63 Future Directions ...... 66 Participatory Approach in Working with Adolescents ...... 66 Research – Mental Health of Adolescents Living with HIV ...... 67 Intervention – Social Support for Adolescents Living with HIV ...... 70 Intervention – AI Tool for Improving Adherence ...... 71 Limitations ...... 73 Epilogue...... 77 Appendix Interview Guidelines ...... 80 References ...... 83

Preface Twenty years ago, I found myself in Matero, a compound (slum neighborhood) in

Lusaka, Zambia, in what appeared to be the peak of the HIV epidemic (data now confirms that the AIDS epidemic in sub-Saharan Africa peaked in 2003). Matero was a dusty, mostly treeless compound populated by brick homes and shacks. Nearly one in five adults in Matero were infected with HIV and dying. Lifesaving antiretroviral medication was limited, when available. A few of us began to work with newborns and infants infected with HIV at birth, supporting a local physician to provide medical care to these children and partnering with neighborhood leaders to set up a community care program. It was a time when many infants in sub-Saharan Africa did not survive to age 5

(median life expectancy for a child infected with HIV at birth was 48 months).

Nevertheless, this diminutive program in Matero managed to buck that trend, and of the

1500 children who were provided long-term care over the last 19 years, only 13 died.

Each death, however, mattered deeply, and the program has evolved with every tragedy.

During this same time, the world has invested over half a trillion dollars on finding cures and establishing complete public health systems to tackle the HIV epidemic in sub-Saharan Africa. The comprehensive global response to the HIV epidemic is often held up as an exemplar in public health circles. That may be at risk now. Three times in the last three years, I have received calls from friends in Matero that one of the adolescents I had known in the community had died of HIV. Each was a child

I knew personally, intimately in the way you know a child who you have seen every day for the first few years of its life and later witnessed growing up to become a teenager. In each case, the young adult had become negligent in taking his HIV medication, and the ensuing avalanche of opportunistic infections had taken his life. It was heartbreaking.

Adolescent non-adherence to HIV medication is now one of the biggest crisis threatening to reverse the gains of the past 20 years in the global fight against the HIV epidemic in sub-Saharan Africa. What causes these youngsters, who understand the importance of taking their medication daily, to do something as hazardous as inviting a life-threatening infection back? Both public health and academic research are starting to pay more attention to this, but the pace of youth HIV mortality in sub-Saharan Africa is only increasing. In the face of this crisis, it is often difficult to read the published research in scientific terms. Academic reports seem dry, impersonal and small, and often lacking in urgency to appear almost nonchalant. Are we examining the issue from all perspectives? Are we chasing down all the causal leads? Are we even asking the right questions? Over time and from hearing anecdotal accounts, it has appeared like the youth in Matero were particularly vulnerable and dying in higher numbers than in other parts of Lusaka. Life in slums often has an existence independent of its descriptors. Was there something about living in the Matero neighborhood that was making it hard for these youth to adhere?

As epidemics progress, they develop their own narrative style. In the first decade of this century, the AIDS epidemic in sub-Saharan Africa was viewed in human terms through a poetic optic. During the second decade, as the focus shifted to strengthening public health systems, the tone of the narrative has become workmanlike, replete with performance indicators, and tracking metrics. In every interview with the young adolescents living with HIV, there were moments when they revealed how scared they were; when our gaze met in a way where we both acknowledged our bewilderment at their situation. And I have puzzled ever since if we adults are with them in their

6 struggles when they are unable to handle their fight or if a generation is going to vanish without discovering their future.

Chapter 1

Gift keeps getting awakened every night by the loud music blaring from the bar next door. At 16, she lives with her grandmother in a compound (slum) in southern

Africa. Like adolescents her age, she wants to be with her friends, go to school, and own a cellphone. Her grandmother makes a living selling boiled eggs and chips to the patrons in the bar and stays up till the early hours of the morning. Sometimes Gift works with her, and when that happens, she misses school.

Gift was infected with HIV (the virus that causes AIDS) from her mother at birth. Ever since she can remember, her grandmother has been giving Gift some medicines every day. A few years ago, in response to incessant questioning, her grandmother broke the news to her about being HIV infected. Gift is now responsible for taking her HIV medicines by herself. She is often sad and angry about being HIV infected. Now and then, she gives herself a “holiday” from taking her medicines because she feels healthy. She dislikes the nurse at the clinic who always makes her wait, so sometimes she does not pick up her medication refills on time. She also does not want her friends to know about her HIV infection, so whenever she is out with them, she will miss her medications.

Gift’s story (while fictitious) is that of a typical adolescent in a slum in southern

Africa. It is a nightmare scenario for public health officials and those working to contain the AIDS epidemic in sub-Saharan Africa (SSA). Adolescents in the slums of

Zambia who are on HIV medication take them regularly less than 50% of the time.

Without the youth in the slums in Zambia (and by extension in the slums of SSA, which

8 accounts for almost 80% of all youth worldwide living with HIV) taking their HIV medication regularly, there is no path for the world to eliminate the AIDS epidemic.

The AIDS epidemic

The AIDS epidemic, now entering its fourth decade, has infected 75 million people and claimed 32 million lives. The epicenter of the epidemic has been SSA, where

11 countries have accounted for the vast majority of the infections and deaths. HIV infections in SSA peaked in 1996 with 3m new cases per year, and mortality from the epidemic peaked in 2004 at 1.7m deaths. In early 2003 then-President, George Bush launched the President’s Emergency Program for AIDS Relief (PEPFAR) program, and in addition to the commitment from the US government, the program served to attract resources and funding from a large number of donor countries. The early 2000s were a period of intense activity in SSA –an entire generation of adults was being killed by the epidemic, and many of the world’s leading medical researchers, pharmaceutical companies, humanitarian agencies, and volunteers turned their focus on sub-Saharan

Africa (SSA). Anti-retroviral medication (ARVs) started to become more available, their distribution more widespread, and protocols established across all the impacted countries. An infrastructure for ARV delivery was put in place outside of the national health systems (something sharply criticized since then), and large numbers of people began to be tested for HIV and started on ARVs. This had the simultaneous effect of reducing the number of deaths and slowing down the epidemic.

Today it is estimated that roughly 85% of the 21m people living with HIV

(PLHIV) in SSA are aware of their infection, and two-thirds are on treatment (the global statistics are similar with over 80% of the infected aware of their status and almost two thirds on treatment). Total deaths caused by HIV have declined from 1.7m in 2004 to

9 less than 770,000 in 2018. There is a collective sense of an existential crisis averted, and nations are starting to look forward to a world with HIV contained completely – an indication of which is the recent establishment of an ambitious goal of identifying 90% of all infected, placing 90% of the identified (as HIV infected) on ARVs and ensuring that 90% of those on ARVs see a decline in viral loads. This goal with the catchy title of

90-90-90 is now becoming the basis for public health programs and, in many instances, even national economic planning. While the AIDS epidemic is coming under control as a general epidemic, with over half of the infected now having viral suppression, it is growing in vulnerable populations, including LGBT, MSM, and the young.

The focus of this thesis is the young people living with HIV.

Youth Adherence to HIV Medication

Adherence is the extent to which patients take prescribed medication on time and keep all clinic and lab appointments. While adherence is critical for all medication regimens and is a global concern for chronic ailments (poor adherence costs healthcare systems over $300B/year worldwide), in the case of HIV, it is of critical significance.

Successful treatment outcomes are contingent on patients taking prescribed medications at or greater than 95% of the time. Sub-optimal antiretroviral therapy

(ART) adherence has negative individual (relapse and higher viral load) and societal

(creation of new strains of HIV and an increase in the population of people capable of

HIV transmission) repercussions. With two-thirds of the 21 million PLHIV in SSA now on ART, there is rapidly growing attention among researchers and public health professionals toward the management of ART adherence and a growing realization that adherence levels (a) vary vastly between cohort groups (Nachega et al., 2014); (b) vary

10 over time within individuals (Chaiyachati et al., 2014); and (c) resist easy management, particularly at scale (Haberer et al., 2017).

Adolescents in SSA account for 85% of the world’s 2 million adolescents living with HIV (Adejumo, Malee, Ryscavage, Hunter, & Taiwo, 2015). With continued scale- up of ARV distribution, HIV is no longer the leading cause of death in SSA, and for large sections of the population, it has now become a chronic ailment to be managed and contained. However, for adolescents, it is a different story. Deaths due to HIV have increased by 50% among adolescents and continues to be the number one cause of death among this group. Poor adherence to ART is to blame in large part for this situation. It is a measure of the lowered adherence levels among the adolescents that while they account for 15% of PLHIV, they account for over 33% of all new infections (Kim et al.,

2017). Additionally, there are 1.1 million children below the age of 10 who are HIV+,

90% of who live in SSA, and will be reaching teenage years in the coming decade, making the challenge of ART adherence among adolescents a critical area of concern in containing the AIDS epidemic.

Research addressing ART adherence among youth has been limited, and there are at least three significant gaps in our collective understanding that call for a more in- depth examination. First, there is a scarcity of research hypothesizing and confirming causal linkages to adherence behavior among youth in SSA. In a recent systematic review of youth HIV adherence in sub-Saharan Africa, Ammon et al. summarize 11 studies (an even mix of qualitative and cross-sectional quantitative studies) and tabulate

44 barriers and 29 facilitators to adherence. Most of the barriers, including forgetfulness, depression, drug side-effects, and perceived stigma, were patient-related with their locus in the individual. The facilitators were, conversely, mostly factors

11 located in the external environment and in social networks. These included caregiver support, peer-groups, and reminders from community health workers. However, as the authors conclude, these studies provide convergence on a few key factors but do not reveal causal linkages.

Second, a lack of longitudinal studies. Adherence is not a one-time event but is often a lifelong commitment to daily action. For most adults, it is not easy for adolescents and youth; it is even less so. Adolescence and youth are a time of significant physical, emotional, and behavioral development and changes. Generally accepted to cover the period from onset of puberty through adulthood (spanning age group from 12-

20), adolescents are particularly susceptible to peer pressure, mood swings, impulsive behavior, risk-taking, and immature judgment. Prima-facie, these factors appear to be relevant to impacting adherence behavior, yet there appear to be very few published efforts examining across-time influences on youth adherence behavior.

Third, studies to date with this group have addressed only individual and social factors in locating correlates to adherence. There is little published work that has examined the lived environment (the neighborhood) as a causal or mediating construct affecting adherence behavior nor studied the subjective lived experience of the youth in a particular neighborhood for its impact on adherence. Later in this discussion, we will address this gap and examine the neighborhood for its influence on adherence.

Theories of adherence

Adherence to medication is an individual action repeated at prescribed intervals.

Most models of interventions to support HIV medication adherence are based on cognitive theories of behavior, and the resulting design of the adherence programs reflect this theoretical stance. For instance, the COM-B model, the most widely used

12 framework for creating adherence programs, views adherence beliefs and behavior as being governed by the patient’s capabilities to manage medication, the opportunity to do so regularly, and motivation to maintain the practice. Other models take this theoretical framing a step further and take into account the impact and influence of social variables on adherence behavior. Amico et al. ( 2018) review a dozen models that include social context as a key factor influencing adherence behavior. These include the social- ecological framework that views the patient behavior as resulting from the influence of individual factors (motivation, skills, self-efficacy), micro-level factors (significant-close others), meso level factors (community and neighborhood factors) and macro-level factors (policy, health system structure). The social-ecological model is generally acknowledged to be comprehensive and affirmatively positions the neighborhood as an influence on adherence. While these approaches have found widespread application, it is essential to note that in both categories of models (psychological and psychological- social models of adherence), the locus of the adherence decision and agency is the individual. This is a point we will revisit later in this discussion.

Given the socially embedded nature of the HIV illness – a virulent pathogen, a moral affect-laden and stigmatizing infection, the often visible signs of the progression of the disease, and the preponderance of the condition among the poor – it may be restrictive to view the HIV infection in purely biological terms and the adherence behavior as a strictly individual agency in action. The patient-provider relationships often have structural power inequities and paternalistic overtones (Broyles, Colbert, &

Erlen, 2005). In the case of infectious illnesses such as HIV and Tuberculosis, this relationship is also infused frequently with blame (for becoming infected, for missing medication) and moral judgment (the overall sexually transmitted nature of most HIV

13 infections). As a result, even socio-ecological models of adherence (which ultimately still view adherence as the actions of an independent agent) may be somewhat limiting in attempting to understand and explain the behaviors of the infected. A more subjective understanding of the lived experience of the illness may be required to uncover daily adherence practices.

This thesis acknowledges these dimensions of adherence and adopts (in addition to a socio-ecological approach), a subjective framing of the lived HIV illness in understanding adherence behavior. While this comprehensive theoretical position could come up for criticism as being too expansive to reveal any new learning, it affords an exploratory study such as this, the opportunity to examine both the effect of the neighborhood as well as the lived experience of the patient within the neighborhood context. In the case of the youth in SSA, this neighborhood context is often a slum.

Sub Saharan Africa and the growth of slums

Rapid urbanization is transforming most parts of the developing world. The UN

Urbanization Prospects 2018 report concludes that 55% of the global population is now urban. This growth has been particularly pronounced in Africa, where the urban population has grown from 30% of the national population to over 60% in 20 years. In

Asia and Africa, much of the urban growth has been in slums. Slums have been defined variously in the literature, but as a whole are characterized by poor infrastructure, sanitation, impermanent tenancy, and in most instances, a high density of population.

While even as recently as 2010, the UN was working on a vision of “cities without slums,” urban planners now acknowledge that slums will be a part of the city landscape for the foreseeable future. In SSA, the growth of slums has been particularly significant.

Official census reports for SSA place slum populations at 60% of the urban population

14 and more recent approaches to measuring residence using drones and satellite imagery place the slum population closer to 80% of the urban population. `

Slums in Lusaka, Zambia

Zambia, a landlocked country in sub-Saharan Africa, has grown in population from 11m in 2000 to 18m in 2019. During the same time, Lusaka, the capital city of

Zambia, has more than doubled in population from 1m to 2.6m. The city has a markedly colonial history, initially settled by white farmers and operating as a key transit point between the resource-rich regions of central Africa (presently Congo) and the various ports. Prior to gaining independence in 1964, Zambia (then Northern Rhodesia) was a strategically vital part of the British colonial economy in southern Africa. Until the mid-

1940s, only black African men who worked in Lusaka were allowed to live in the city (in specially designated areas). Women and families were permitted into the city after the passing of the African Housing Ordinance in 1948 (Myers, 2006), which formalized the provision of land for black Africans to build shacks and small residences. Most of the land allotted for this purpose came from the white (and in a few cases, Asian) farmers, and the resulting slum neighborhoods called compounds still carry the names of the farmers who originally owned the lands (e.g., George compound, Chelstone compound, etc.). These compounds have continued to swell as the city population has expanded and now account for over 70% of Lusaka’s 2.6m residents.

This study will be based in the Matero compound, one of the first two compounds to be created in 1950.

Slum effects on health

Neighborhoods impact the health of their residents. There is now a rich body of research that has proposed and explored the impact of the lived environment (the

15 neighborhood) on health (Oakes, Andrade, Biyoow, & Cowan, 2015). Poverty, health, and public policy often intersect in mutually reinforcing ways in (spatial) neighborhoods to generate “concentrations of disadvantage” (Jargowsky & Tursi, 2015). There is extensive support for the impact of the neighborhood on all aspects of health, including susceptibility to chronic illnesses, infectious diseases, violence, and stress-related

‘weathering.’ Earlier investigations on ‘neighborhood effects’ tested for one individual factor at a time. With the increasing availability of sophisticated quantitative techniques to ‘tease out’ the effects of multiple factors concurrently, including through interactions with other factors, researchers are now equipped to explore ‘multi-level’ and complex causal models (Arcaya et al., 2016). This permits a more intricate exploration of multiple neighborhood factors simultaneously and helps inform programmatic interventions in a more targeted manner.

Slums are a particular instantiation of spatially defined neighborhoods, and there is now a growing field of study, turning its attention to slum effects (Ezeh et al., 2017).

This thesis is situated in slums, and at the outset, it is essential to clarify issues of terminology. The term ‘slum,’ by the nature of its origins, carries pejorative connotations about the place and its peoples. Words like informal settlements, unauthorized settlements (a favorite among governments), or informality are now employed (in the place of ‘slum’) in the academic circles. However, given that the generally accepted definition of slums is that set out by the United Nations, and various

UN agencies continue to use the term slum in all their publications, we will do the same.

Slums vary in form and composition. Not all poor people live in slums, and not all people living slums are poor. However, several factors persist in common across slums, including overcrowding, insecure land tenure, inadequate water, and sanitation

16 infrastructure, and a relatively higher level of poverty. Slums have existed for hundreds of years, and with the recent urban boom, new ones have sprung up, others have expanded. Whatever the temporally proximal cause that leads to their creation, slums have their origins in power inequity. Slums impact the health of their citizens through multiple causal pathways. The physical environments of slums, characterized by intermittent, inadequate and polluted water supplies, substandard sanitation, irregular to non-existent trash collection, and environmental pollution, impact health through infectious and vector-borne illnesses. Other factors such as violence, social dysfunction, insecurity around tenure, and lack of a political voice lead to heightened levels of stress that weather its citizens –amplifying (existing) illnesses and causing new ones (Corburn,

2017).

Adherence programs in Zambia

ARV adherence programs in the compounds of Lusaka are one-size-fits-all and are managed from the government’s neighborhood clinics. The programs comprise of two parts. (a) An initial education session – provided by the physician on the importance of taking ARVs regularly and (b) ad-hoc support from the network of Community Health

Workers (CHWs) who support patients on ARVs on a day to day basis. Upon starting

ARV medication, all patients are provided the names and contacts of the nearest care workers to their homes and assigned to a care worker. The CHWs, in-turn, are also informed about newly enrolled patients in the program assigned to them. More recently, the Center for Infectious Disease Research in Zambia (CIDRZ) has been testing and rolling out community adherence groups – a neighborhood approach to bringing together small groups of people on ARVs to provide peer support to each other. Given the nature and composition of these CAGs, the participants are almost exclusively

17 adults. For their part, the adolescents in the slums of Zambia are on their own when it comes to maintaining ART adherence.

This thesis will examine the effect of the slum neighborhood on HIV medication adherence among youth in the Matero compound of Zambia.

Summary:

• Anti-retroviral Treatment (ART) adherence rate among adolescents and young

adults (youth) in SSA is <50%. HIV continues to be the leading cause of death for

youth in SSA.

• Previous literature has identified 44 factors (Individual, Medication, Caregiver,

and Health system factors) as “barriers” to HIV adherence for youth in SSA.

These include individual and social factors but do not include the impact of the

neighborhood.

• Slums in SSA account for a large portion of the population. Slums in Africa have a

higher HIV prevalence, a higher density of youth, and any efforts to target HIV

adherence among youth must focus first on slums.

• Current adherence programs in the slums of Lusaka, Zambia are a one-size-fits-

all approach and are limited to education sessions in the clinic and the

availability of community health workers (CHWs) in the community for support

as needed.

• This study argues for examining the lived experience of HIV by the youth in a

slum environment.

Chapter 2

Research Question

This thesis will ask and attempt to answer the question:

Does living in a slum neighborhood impact ART adherence behavior among youth?

In attempting to understanding how a neighborhood impacts the health of its residents, several useful operationalizations have been proposed. Given the nature of the questions being addressed in this thesis, the study will adopt a comprehensive operational framing put forward by Ettman et al. 2019) that dissects the neighborhood into three environments – physical, social, and resource – for systematic examination.

The physical environment includes factors such as the density of dwellings, availability of electricity, water and sanitation, rainfall protection, ventilation, overall comfort, noise, distance to the clinic, distance to school. The social environment includes stigma, social support, and interactions with peers, family, and friends, attendance in church, recreation and relaxation with friends, factors that contribute to social disorganization in the neighborhood, social stressors, relationship with CHWs, experience in the clinic.

The resource environment comprises factors such as availability of CHWs and support when needed, clinic support when not feeling well, and help in keeping adherence from the clinic.

Methodology

Study Design

This study of adolescents took place in the Matero compound and Kabulonga in

Lusaka, Zambia, in January 2020. Matero is served by three city clinics (Matero Main,

Matero Reference Clinic, George Clinic) that also serve as ARV distribution centers. A few of the adolescents were enrolled in the ARV distribution program at the University

Teaching Hospital (UTH). This was a result of where their caregivers had first taken them for testing, or if their HIV status had been discovered during a hospitalization.

Sampling

The study used a convenience sampling approach to identify participants. Three sets of participants were recruited for the study.

a) Adolescents in Matero – these were to form the bulk of the study participants and

were residents of Matero.

b) Adolescents from Kabulonga (a wealthy neighborhood in Lusaka)

c) Clinic workers from Matero city clinics who work with adolescents

In identifying potential adolescent participants from Matero, three criteria were set up as preconditions. Participants should be (a) between 14-20 years of age; (b) should be on ARVs and managing their ARV regimen by themselves, and; (c) should be residing in the Matero compound. For the second group, the same criteria as above were used except that these youth were to be residents of Kabulonga.

The assistance of the Matero Care Center was utilized to recruit participants. The

Matero Care Center (MCC) is a local Zambian NGO and manages the care of over 450

HIV+ children in the community of Matero in Lusaka, Zambia.

Healthcare workers in the three clinics were briefed in detail about the study and their permission was sought to work with and through them for recruiting participants from their pool of patients. After the necessary approvals were received, clinic workers were coached on the messaging to be utilized for recruiting participants to ensure that

20 all participants had similar expectations about the study and their participation.

Participants were recruited by the clinic and care workers during their routine interactions (medication refill visits, regular check-ups, and follow-up visits). All recruited participants were managing their HIV medication regimen independently and were visiting the clinics for ARV refills and follow-up visits by themselves.

The research was approved by the institutional review board at the

Massachusetts Institute of Technology. Studies involving stigmatizing and personally painful illnesses like HIV, and that too with young adults, is fraught with concern. The research team spent a great deal of attention on the design and execution of the study to ensure safety and confidentiality for all participants. A clear consent form with simple language was created. Once the final list of participants was assembled, participants were given time slots to visit the interview location. All participants were given bus fare and a packet of biscuits as compensation for their time. However, they were not told about the payment until after the interview was over to ensure there would be no impact of potential compensation on their responses.

Data Collection

The thesis presented a methodological challenge in that we were attempting to answer questions that were either conceptual (e.g., the power imbalance between youth and public health directives) or arising from practice (we are witnessing poor adherence among youth and do not know why). We wanted to inform theory as well as practice.

We were setting out to answer questions such as:

1) What is the narrative the youth carry about their HIV infection? What is their

narrative about their lives, their surroundings, their social networks, and the

physical environment they lived in? Within the narrative of their illness, how do

youth frame their HIV treatment adherence?

2) How does social stigma in the neighborhood play out in their lives? In their social

networks? In the clinic infrastructure and community health worker networks?

How is stigma manifest in the slum neighborhood?

3) Agency – What role do the youth see for themselves in the adherence process?

How do they perceive this role? Do they sense an agency in their health?

4) What is the lived experience of power imbalance (with adults, with the clinic,

with the care workers) in the adherence process for the youth?

5) How are the current adherence programs interpreted subjectively by the youth?

To that end, the study was designed to employ two qualitative data collection techniques – the semi-structured interview and field observation. The semi-structured interview process allowed for an interactive conversation with each participant to better understand their adherence behavior and the subjectivity of their illness within the context of the slum environment. The latter permitted the researcher to first-hand to observe the lived experience of their HIV illness within the context of the slum. The positionality of the youth in the interview process was as an active participant in the research process and not a passive actor.

The interview guide is included in Appendix A. While the interviews mostly followed the outline laid out in the guide, the mood and tempo were kept relatively relaxed, and the conversation was allowed to go where the participant responses led it.

Probes were utilized to help the participants expand on specific comments. All interviews were conducted by this researcher and the nurse from MCC. Interviews lasted, on average, 55 minutes and were conducted in English. Participants were told

22 that where necessary, they could switch to the local language Nyanja. The nurse was familiar with Nyanja and translated in real-time. As the interviews progressed, it became evident that having two interviewers allowed for the process to resemble a conversation, and the two interviewers were often able to key off one another and also pursue lines of questioning without making the interviews appear like an interrogation.

The interviews with the 34 adolescents from Matero were conducted on the premises of the Matero Care Center, which is located centrally in the Matero compound and was well known to all participants. The interviews were conducted in a room in the clinic customarily used for patient discussions. Interviews with the five adolescents from

Kabulonga were conducted in a private location near Kabulonga's main intersection.

Meetings with the three clinic staff were held in the Matero Care Center.

After each interview, the two interviewers spent, on average, 60 minutes debriefing. This time was also used to ensure that in addition to the text of what was said, the non-verbal cues were also immediately documented, and nothing was left to memory. This process, while time-consuming at the moment, allowed for a more accurate and complete transcript for each interview, and both interviewers felt that the debriefing process helped make the notes richer in detail. The two interviewers worked during the debrief discussions to go over all the instances where the participant had provided an insight into their adherence to categorize participants into poor/fair/good adherence categories. The written transcripts of the interviews were prepared by the researcher and reviewed and confirmed by the nurse each day. Finally, once the transcripts were created for each interview, all identification information about the participant, including their name and location, was stripped and replaced with a coded number. The table connecting names of the participants to their codes was retained by

23 the Matero Care Center, and this researcher did not have any further access to this information.

The purpose of the interview process was threefold (a) understand better the lived experience of HIV for each participant; (b) understand the process and experience of managing their ARV regimen for each participant; (c) understand the various factors that influenced the management of ARV for each participant. The semi-structured interview guide was constructed with these objectives in mind, and the two interviewers discussed these interview objectives in detail prior to commencing the interviews.

The purpose of the interviews with the clinic staff was to uncover a second perspective on the lived HIV experience of adolescents in Matero, the challenges faced by youth in Matero in managing their own ARV regimen, and the challenges faced by the clinic staff in providing care and support to the adolescents in their medication adherence.

Altogether, 42 interviews were conducted during January 2020. All participants were carefully read the consent form at the start of the interview meeting and given sufficient time and flexibility to ask questions, decline to participate, or once started, to terminate the interview at any time. All participants gave voluntary verbal consent to proceed. No participant refused to participate or requested to end the interview prematurely. All participants were thanked and debriefed for any concerns or any requests from their side.

Field Observation in Matero

Observation research is a vital part of ethnographic data collection. Observation research allows the researcher and team to supplement interviews with a first-person view of the phenomenon being studied and adds both confirmatory and contradictory

24 information to the interview findings. In this case, the author walked through the marketplace, bars, and lanes in Matero for 60-90 minutes every day as part of first- person ethnographic data collection. These walks were often between interviews or at the end of the day. Notes from the field observation walks were recorded each evening by the researcher.

Data Analysis

Ethnographic interviews have been incorporated into research in multiple ways.

From being used as a factual report of reality, as projections of researchers’ views of a phenomenon, to being part of a co-created constructed reality by the researcher and interviewee, interviews serve many purposes in building an understanding of particular issues. In our case, the interview process was grounded in the theoretical view of HIV medication adherence as a socially embedded behavior that is part of the lived experience of being HIV positive. Indeed, the motivation for adopting ethnographic, semi-structured interviews as the chosen methodology over a survey or a pure observation research was based on this theoretical premise. The research design, the framework for the semi-structured interviews, and the analysis of the interview data reflected this approach.

The completed transcripts were studied in detail before distilling them in a manner that allowed themes to emerge naturally. The interview transcripts were printed and laid out on the floor of a classroom on campus. This allowed the researcher to spend many hours trying to take in all the interviews and allow themes and factors to surface naturally. Themes emerged both from the content of what was said, and the specific words and phrases used. This process was followed by highlighting themes across the

25 interviews using different colored highlighters. It is essential to point out that no a- priori framework was created to generate themes. Since changes in body language and tone were journaled along with the exact words that participants used, the generation of themes was further enriched. Nyanja words were translated for meaning but were left unchanged in the transcripts. Overall, the researcher maintained active attention to ensure that researcher bias was minimized in each stage of the analysis stage.

An important point to reiterate is that the transcripts were not ‘reduced’ to themes. That would be a form of deconstruction and reconstruction that could at best make the interviews less detailed and, at worse, misrepresent the meaning the interviewees were conveying. Instead, specific themes were allowed to surface to answer two questions – (a) what seem to be the factors that are serving as barriers or enablers of adherence and (b) how does the slum neighborhood impact adherence behavior. The quest for answers to these two questions was driven by examining the interview transcripts with an open mind and holding these questions alive throughout the analysis. The researcher did not seek to find information that explicitly confirmed previous findings or refuted them. No diagrams or visuals were used.

Results and Discussion

In most academic writing, the “results” and “discussion” sections are kept separate. In this instance, given the subjective nature of HIV adherence and the ethnographic methodology employed, the thesis will combine these two sections into a single free-flowing narration. This section will be presented in two parts. The first part will discuss the findings from the interviews and the primary factors that appeared to impact adherence behavior. The findings reported here, for the most part, support and

26 add to the existing research in this area. The second part will narrow the context of the discussion to the Matero slum neighborhood and address specific findings that address the core question of this thesis –does living in a slum neighborhood impact adherence behavior?

In what follows, details on names, quotes, situations, and events have been deliberately altered without in any way affecting the findings or conclusions.

The Socio-Ecological Model

A framework employed frequently to examine the social and structural influences on behavior is the socio-ecological model (Bronfenbrenner 1977). The socio-ecological model (SEM) has broad applicability. Within public health, the SEM approach builds on the understanding that social and environmental factors individually and jointly impact the health of populations, particularly vulnerable groups and those who face health disparities (Kaplan, 2004). Visually it is often depicted with the individual situated within a set of nesting circles that each represent a layer of influence. The circle/s closest to the individual is viewed as the most proximal influence and is comprised of personal and interpersonal influences. Each subsequent outer circle represents another set of influences that are further removed from the individual but are no less important. The next outer ring represents influences and interactions that the individual has direct contact with including the social networks, and peer groups. The next outer circle comprises influences such as the institutions, the environment in the community, violence, and dysfunction, and social capital within the neighborhood. The next outer layer contains the structural elements, including community resources, infrastructure, and policies that influence the neighborhood. The model, as employed in this discussion, comprises four layers of influence on health outcomes and health behavior

(in our case, medication adherence) and is particularly suited for highlighting the impact and interplay between individual, family, community, and structural influences.

The following discussion will be framed using these four layers of influence outlined above in our attempt to provide a better understanding of the ways in which adherence is impacted by these factors and identify points of intervention.

Figure 1. Socio-Ecological Model Influences on HIV medication adherence

Individual factors

Disclosure

Within the HIV care continuum, disclosure is the process of revealing their HIV status to a person. It is a moment that is fraught with the potential for trauma and marks a milestone in the life of every person living with HIV (LeGrand et al., 2015).

When it comes to disclosing their HIV diagnosis or status to a child, the process is complex and challenging to implement. Along with expanding the availability of ARVs after 2005, public health systems in SSA significantly improved their capacity for testing, ARV distribution, and follow-up care for children. The vast majority of the children perinatally infected with HIV at birth were starting to live longer and, disclosure of their serostatus became a significant psychosocial challenge for the surviving parent/s, grandparent/s, aunts, siblings (the primary caregivers of the child).

Lack of adequate preparation, training, and a combination of guilt and stigma prevented caregivers from having the difficult conversation with the child about his/her HIV status. In a typical scenario in SSA, the child was given ARVs by the caregiver but was rarely told about her HIV status. This process would continue until the pre-adolescent child would begin to resist taking medications and accost the caregiver about it. This presented a psychosocial challenge for the caregiver who would often respond to the situation by resorting to small lies “you have to take this because it will make you strong” “you have asthma, and if you don’t take it, it will stop you from breathing”. In some instances, they initiated incremental disclosure with the goal of full disclosure by early adolescence. National guidelines recommend full disclosure of HIV status by the age of 12, though studies have repeatedly found that in SSA, the disclosure process is delayed well into late adolescence (Cluver et al., 2015). Research has highlighted both negative and positive psychological, behavioral, and social outcomes from the adolescent disclosure process (Zanoni, Sibaya, Cairns, & Haberer, 2019).

Every single participant in our study had been disclosed. The most recent was someone who had been disclosed 18 months ago, and the oldest to be disclosed was 14 years old at the time. In all instances, participants had been disclosed by their primary

29 caregiver or a family member, since Zambian law restricts clinics and testing centers to disclose only to adults (over 18) unless accompanied by a caregiver. Interviewees described their moment of being told they were HIV+ (disclosure) as being disorienting, isolating, and painful.

“I felt why me, why I’m the only one with this”

“I was disclosed by the sister to my mom. I felt really bad. Everyone understands HIV as a very bad thing. So I was very hurt”. “I was still angry and never really accepted. Then I outed my medication with not accepting and bad feeling of why me?” “I felt so bad, my mind started growing, and I heard my friends talk bad about people who are HIV..why they are saying bad things about people like us..I used to feel so bad I used to cry in my room.” Almost a third of the young people said that upon learning about their status, they felt like they were going to die.

I got confused. I know that the only way to get HIV is to have illicit behavior with girls or using sharp objects and I was not doing both Some ran away from home (NC); others stopped eating. QN said that he started fighting with his father and never talked to him for two years (in particular, his story reveals the deep undercurrent of emotional trauma within families from HIV).

Dad told me one time about all the bad things he did the sickest things he did. He used to go to a lot of bars. He used to chill a lot. That’s when dad told me I am sorry to give you this. So that’s how we made our friendship again. His father, who was also HIV+, finally broke through their mutual wall of silence and one day had the above conversation. PM reported that from that time he and his father

“have become close, and many times I go with my father to do piece work..sometimes we go to eat chicken.” In 9 of the cases, there appeared to be problems in disclosure. These included abrupt disclosures with no accompanying counseling or preparation and accidental disclosures.

In almost all these cases, the participants reported a variety of feelings and reported behaviors that were indicative of psychological trauma (LeGrand et al., 2015; Patton et al., 2016). This reaction was not limited to only poorly done disclosure. Despite seemingly appropriate protocols being followed, in 7 cases, participants reported distress and reactive behavior. In every case where the disclosure was done poorly, there were accompanying behavioral responses that impacted adherence negatively. In all of these cases, the participants related how they decided to stop taking ARVs and even questioned their reasons to live. A scan of all the instances with problematic disclosure showed that barring 2 cases all others fell into our poor or average adherence category.

Interpersonal Factors

Family support

Family support – family influence on adherence showed up in multiple ways – almost all were positive. Family influence showed up in 3 broad ways:

1. Provided tools, reminders, and follow up support. Family members (usually the

primary caregiver) helped make the adherence process easier through daily

reminders and follow-ups, by bringing the ARVs and water daily at the

designated time and helping with taking the medicines and provide oversight to

ensure that the adolescent was maintaining adherence.

2. Institutionalized HIV and medication adherence within the family. Family

members participated in the logistics of picking up ARVs, accompanying each

other to the clinic, storing the medicines carefully at home, supporting each other

in case of any side-effects and openly discussed and planned activities to account

for ARV medication schedule.

3. Framed the HIV situation and adherence through words, attitude, and action.

Family members taught the adolescents adherence-management skills, and

caregivers, in particular, worked to destigmatize the experience of living with

HIV.

A more in-depth analysis of interviews with the patients revealed that almost all youth in the adhering group had one or more strong caregiving dyadic relationships at home. These were often with the mother, an aunt, or a grandmother and, in some cases, the father. In many instances, these were relationships that had predated disclosure and only became stronger after disclosure. Some patients had multiple strong dyadic relationships at home – often with a parent and another person on ART. In every case, the strong relationship helped to provide all three aspects of support discussed above.

When this strong relationship was with the mother, the dominant support was most in the form of providing tools and reminders and follow-ups. In contrast, with a sibling, the relationship often prioritized framing the HIV situation and normalizing it – “she always encourages me and tells me I am completely normal” “she always tells me I can achieve anything.” This aligns with recent findings on youth adherence by Kelly et al. (2014), who found that while causality was not established, social support and scores were found to be higher among people who adhered.

A few of the younger adolescents spoke about a strong paternal influence on their adherence through punitive responses to non-adherence. In each case, the youth reported that their dad, who was also on ARVs, would “whip me” or “beat me” if he ever missed taking his medicines.

Additionally, two other aspects of family support came through in some interviews.

First, the family member with the closest relationship to the youth often went to the defense of the child/youth in instances where there was ‘experienced’ or ‘anticipated’ stigma. Often these situations involved a neighbor or a visiting relative who would suspect that the youth was on ARVs and say something (or begin to say something) stigmatizing. The family supporter would immediately step in to defend the child, and this helped to strengthen their relationship further. Second, the close family supporter would play a watchful role over the youth and ensure that they “did not go with bad boys” or fall into ‘bad’ company - “my mother always checks who I play with and does not want me talking to her” (referring to a girl who used to be a friend in the past but had recently become pregnant at 15). When probed further, these youth responded that they received more attention and support that the other children in the family.

However, family influence was not always positive. There were four examples of chronic negative interactions within the family. Each time it came up in the interviews, the situation involved an uncle, aunt, or a stepmother.

“my aunt would say that I could not become anything because I am positive. It was confusing to me. I felt like I was not a human enough. I was really hating me so much”

For instance, TN reported that his uncle, who lived in the same house, would berate him every day when his father was away at night working. The father’s brother would come to the door of his room and would yell invectives and “mean things that I was a sick person who should not be living” every night. The youth reported that it was the most stressful part of his daily life, and often his father would have to counsel him. In other instances, it became clear that poor adherence or risky behavior by the parent or other family members tended to serve as a negative exemplar. In one case, the mother

33 was herself lax on taking her ARVs, and the youth said that “I feel sometimes like why I should drink my medicine daily when she does not”. The mother sold cassava in the marketplace and often came home late and did not take her ARVs.

Lastly, it appeared that, for the most part, the parents or caregivers who had been part of the child’s ARV history for many years continued to maintain a reasonably strong presence and influence well into the child’s adolescence and, often in tangible ways every day. They were part of the support structure that the youth relied on for being adherent. This does raise the question of how the child would manage their adherence if they had to leave home and be independent or if the parent/caregiver ever left the immediate surroundings (died, moved away, etc.).

Close Friend

Many youths reported having a close ‘other’ outside the immediate family (a friend, a cousin) as a significant influence in their lives. Seven of the 15 youth who reported strong adherence and 4 of the ten youth in the fair adherence group reported having a close friend/s or a cousin who “supported” them and “encouraged” them. In a prototypical situation, their HIV status was inadvertently revealed to this ‘other’ friend or cousin because they “met in the clinic and we both realized that we were taking

ARV,” or in some instances, a visiting friend or cousin inadvertently discovered the

ARVs and accosted them “she had come to stay with me and asked me what I was taking daily.” In other cases, the youth volunteered the information about their HIV+ status to the other in a moment of close friendship

“he told me a lot of things that happened at his place and his struggles in his home and his grandfather's place. That’s when I told him that I am taking medication. He said better you take medication than to live without taking medication..he is now my best friend.”

In every example, the youth reported that they became “close” to this friend or cousin, and in 9 of 11 instances, they said they were “very close” “like a best friend.” In all but 3 of the examples, the other was not HIV+. This is important to note since it validates the role of people not living with HIV in providing support. This close relationship provided a sense of shelter and comfort to the youth, and they felt that this person was important to them.

Intimate Romantic Relationships

Seven of the 34 youth were involved in steady sexual relationships. Four of the seven were young women, two were living with their boyfriends, and one of them was married and already had a child. In every instance, being in a sexual relationship appeared to impact adherence negatively. In all cases, they concealed their HIV status from their partner (and consequently had to hide their ARVs at home), and, in every case, it came in the way of their taking their medications on time. None of the seven were defaulting entirely, and none of them appeared to be symptomatic of any HIV related illnesses. JC, the young girl who was living with her husband, reported that she hid her ARVs in the kitchen and would take her medication if her husband was out of the house. In every case, they reported having unprotected sex and no contraception.

“we are renting a place together, but we don’t share status to each other”

“we love each other and don’t want him to know the status, or he will leave.”

In the two cases where the young women were living with their boyfriends, both reported that they kept their ARV elsewhere (in Matero) and would go there daily to take them. While it is probable that these young ladies were adherent, it adds a high cost

35 to the process of taking ARVs daily. In all cases, they reported that they were unaware of the HIV status of their boyfriends. GM said that her husband refused to take an HIV test when she suggested it one time.

“You then have to approach it indirectly, and if he says that I cannot live with an HIV person, then leave them completely. You can say let’s go to the clinic, and if you are positive, I will accept, what will you do if I am positive” We asked these adolescents in romantic relationships a few additional questions.

We asked if they knew about any of their friends who were in romantic/sexual relations and how they handled the issue of revealing their HIV status. None of the boys reported knowing about any friend of theirs who was HIV+ and in a relationship. Two of the young women reported knowing of others who were in similar situations, and in both instances, they said that their friends also did not reveal their HIV status to their partners. In addition, GM reported a story about a friend of hers who had “thrown away” her ARVs and had later fallen sick and died.

Community Factors

Peer groups

It emerged from the interviews that peer groups – i.e. when groups of youth got together not as dyads but as groups, the influence of peers on adherence was almost always negative. In all of these recollections – 22 out of 34, the youth reported that the group attitude and narrative about HIV was one of (a) intense stigma “I would never live with someone who was HIV” “they say that they would not share anything from someone who is +. Why? I am not an animal? It is only a condition” (b) hopelessness “I have many negative friends who say that they will kill themselves if they got HIV” and

HIV is not that bad”.

The larger peer group presented a strongly stigmatizing and discouraging role within each adolescent’s life, and some were wary and suspicious.

“I disclosed my status to my friends. they started running away from me, and now they all talk about me.”

“I am not that comfortable telling my friends my status. When I am not there, they will be discussing my status. You feel that I am the only one with the disease.” “you take and take the ARV; the virus is not going away. There is nothing that will heal you. Only death, better you die if you get HIV”

When the youth got together, the discussions on HIV status, ARVs, and adherence were always tinged with bravado and denial of HIV’s impact on health and their lives. Peer pressure was singled out as a significant influencing factor in youth dropping out of school and defaulting on adherence.

Peer pressure influenced young men to drop out of school and start doing “piece work”

(daily labor).

“lot of youth in Chunga they drop out of school because of peer pressure..they want to have money …they want it fast” “some of the children stop school because they feel they have grown and they start doing piece work to get some money They shout and get the bus loaded” Neighbors

The topic of neighbors came up unprompted in 18 of the 34 interviews. Where it was not brought up by the interviewee, we introduced it into the conversation during a discussion about their neighborhood. The interviews revealed a broad undercurrent of

37 despair with neighbors. Uniformly, neighbors represented a threat and a source of stigma rather than support. For many participants, neighbors were the first source of stress they encountered once they stepped outside the family. In every case, neighbors were reported as being a negative influence on adherence. Neighbors were “mean,”

“gossiping,” “always gossiping in my back” and were said to be “selfish and hurtful” and to have “mocked” them when they suspected that there was someone in their home who was HIV+ “there she goes to get her ARV”.

“Sometimes if the neighbor like a tenant who are renting knows I am taking medication he can take advantage of me and shout at me that you are taking medication, haven’t your parents told you this and that. Why are you taking medication?” Almost all youth reported that they did not seek help from their neighbors because they would “talk about it,” yet in other parts of the interview, they recounted that in their neighborhood, people help each other. It appeared that the negative effect was associated primarily with the immediate neighbor and not the broader community.

The church

The church is one of the pillars of the Zambian society (Campbell, Skovdal, &

Gibbs, 2011). Zambia ranks second in the world in church attendance, with 85% of the population attending church at least once every week, in many instances, multiple times a week. As we discussed their daily lives and activities, references to “in my church group” appeared numerous times. During the interview, we probed deeper on their networks within the church and the role the church played in their HIV life. Twentynine of the 34 youth in Matero reported regular church visits and having a network of friends within the church. Paradoxically, however, the church did not play a role in the HIV life

38 of any of the youth we interviewed. All of the participants stated that they had not revealed their status to anyone at church, including the pastor. All of the participants confirmed that the church did not have support groups or any activity for HIV education, support, etc. When parishioners died (HIV continues to be the number one cause of death in Zambia), the church members would participate and pray, but the topic of HIV would not come up in discussions. This author has been working in Zambia for 19 years going, and this near-silence about HIV on the part of the church has changed little during this time. Over the last decade, a few pastors in Zambia have been taking an active stance in speaking out about HIV and maintaining adherence. However, in the interviews we completed, we did not encounter any similar example in Matero.

On the contrary, in two cases, we heard about pastors who were recommending that people “throw away your medicines” and come to them for the cure.

“There are these pastors who come from abroad and ask them to bring water. Then they pray for them and pray for the water and tell them to stop taking the medication and drink the water.” In one case, a pastor would pray for them and place his hand on their heads, and as JC reported, many women in the church would cry and say that they would throw away their medication. The Zambian government has promulgated laws that include incarceration and punitive fines against any individual who encouraged not taking HIV medication.

Structural Factors

Poor Quality Housing

While some parts of Matero have cement brick housing, poor housing construction is endemic to many parts of Matero. Large portions of George compound

39 within Matero are mainly run down and have sheets of cardboard or plastic for walls.

Three interviewees reported that their houses were breaking in the rain (January 2020 when these interviews were conducted was the wettest month in Zambia over the last 3 years). Throughout the interviews with these participants, the concerns from the broken walls (in two cases) and broken roof (in one instance) seemed to overshadow their interview responses

“When its rainy season, things get scattered. Matero is not a safe place”.

In general, participants spoke about the significant disruptions and hardships in Matero during the rains. In one case, the family was forced to move into the one remaining room. In another, the youth had to move to live with a relative. In both cases, ARV adherence had been impacted over the last few weeks, and any discussion on HIV adherence appeared less urgent and salient.

“Many people go in the water and die in the water that rises to the level of chest and died of electrical shock. People don’t feel secure.” Bars

Now we come to a set of issues that were mentioned as one of the biggest problems in Matero community - bars, drugs, prostitution. The dense Matero compound streets are dotted with makeshift bars that brew their liquor (jiri-jiri and shakey-shakey) and also sell bottled beer. The bars are often unlicensed, open almost 24 hours (from dawn to 3 am or so), and heavily patronized through all hours of the day – including early morning hours.

“ they play a lot of loud music, and there are too many mashabin (bars)… when I start studying, they start to play music, and it disturbs me” “There is too much drinking in Matero..people drink because they feel they are not solving problems.”

The local liquor is potent and is cheap enough that an average person can remain intoxicated all day for 4 kwacha (25c). Bars were seen as particularly dysfunctional to

HIV adherence in multiple ways

a. Bars primarily attracted young men who would spend a great deal of their time

on the premises. Being in the bar at the time when it was time to take ARVs

almost always resulted in the person missing their medication for the day.

“They have bad timing. Some of them are drinking. If they take both alcohol and medicine, they miss the medicine. Sometimes they put in a juice bottle and even go to school with it. They go to a bar and buy it themselves. Then they behave strangely. Then they miss to drink their medicine.”

“these guys take alcohol because they want to forget the pressures of life. The problems they are facing. Some don’t have food at home so they drink to forget it. Some drink to feel high then they forget to drink their medicines”

b. Bars provide an environment where young men also smoke marijuana. While

marijuana is not legal in Zambia, it is quickly and cheaply available in Matero.

The combination of liquor and marijuana in little shacks all over Matero creates

an unpleasant combination that presents a widespread feeling of dysfunction in

the community. As above, when young men indulge in liquor and marijuana in

the bars, they almost immediately impact their HIV medication adherence.

“They fight from bars, from misunderstand. Those who smoke marijuana also

fight, and they don’t respect big people”.

Bars in Matero feature (for the most part) young men sitting or standing around

the bar. Twenty-five respondents brought up the excessive violence and fighting

in Matero, mostly around bars. The youth of both genders were concerned about

the violence and often had to take circuitous routes to get to places to avoid

passing in front of bars. “People drinking. They drink in the morning, in the

afternoon. They also smoke. Usually, there are fights there.”

c. Patrons in bars often accosted young people walking on the street for money, and

a number of the interviewees mentioned that they or their friend had been

“mugged,” forced to give up their money or a cell phone. This street crime was

referred to as “thefting” and “stealing” by many of the respondents “when I see

them coming to talk to me I start to run” “I hold my sister’s hand and walk fast”.

“There is stealing during the day and night. Sometimes if you leave anything outside, it is stolen. If you take your phone to charge somewhere, it is stolen.” The bars created a barrier to adherence in multiple ways.

a. The vast majority of those on ARVs in Zambia take their medication at night

around 20 hours (8 pm). A young man who often found himself in a bar at that

time would likely not go home to take his medications and, by the time he found

his way home that night, medication adherence was often forgotten.

b. Bars created a spatial location of violence and insecurity in the community, and

even during the day, the youth mentioned that they would often take circuitous

routes to go anywhere to avoid passing in front of bars. If they were in a friend’s

house around medication time, the presence of bars on their way home served as

a deterrent to going home to take ARVs. The result was missed or forgotten

medication for the day. “There is buses and noise.. there is fighting in the bus,

every day that have to catch a thief and beat him.”

c. The unsafe environment created by the bars was reported as a discouragement

and an impediment in picking up medications from the clinic. Two young women

said that if they did not find someone to walk with them on the date of picking up

their medication refills, they would not be able to go to get medicines for fear of

being hurt or mugged on the way.

Drugs

Aside from the bars, marijuana was mentioned as a significant problem by twenty respondents. Matero has, by all accounts, seen a spurt in marijuana consumption.

People who smoke marijuana (the term “junkies” was used by almost everyone) are seen as causing fights and always chasing people in the streets for some money.

“There are this group of junkies they smoke weed and sometimes when he is walking or going to school they will stop him and ask for money. And if they cannot give money they will beat”. “we always move in groups and are alert for the junkies” These “junkies” were also reported to be present near the Matero bus stand where allegedly they indulged in petty theft and creating a violent environment.

“Matero is too much of junkies. People who smoke some weeds drink beer. I see them in the road when I am passing. They are just dancing on the road doing what what” “They are chasing each other and they are fighting. “There are some boys who smoke marijuana, there is fighting, there is also people chasing a thief.” At least three of the young men among the interviewees had found themselves in trouble after starting to smoke marijuana and being accosted by the police or the drug enforcement authorities. In each case, the young men reported a time when they were not only not adherent but were also indulging in petty theft (“anything, I used to steal anything,” “steal clothes left outside” etc. ), and in one case the young man was sent to juvenile detention for eight months. In all 3 cases, the youth reported that during this time, they had serious health issues, and the young man SZ who had gone into juvenile

43 detention had tuberculosis for two years after his release and was hospitalized for two weeks.

“Prostitution”

A factor that was brought up more by boys than girls was the presence of “prostitution” in Matero. When we first encountered it in one of the early interviews, we were a little surprised and gently pushed on the topic to understand more. The word “prostitute” was used to describe young women, often as young as 14 or 15 years old, who would exchange sex with older men for small gifts, money, or even a meal. As the interviews progressed and we probed, both adolescent boys and girls reported that it was common to see, often around bars (but not necessarily only there), young women whom they referred to as “prostitutes.”

“Matero is noisy and full of drugs and prostitution.” “I know they are prostitutes from the way they dress.”

As we probed further, we were able to paint a much more complete picture of this issue.

Some young women as they turned 15 or older (or if they dropped out of school or stopped school sooner) would find themselves in the company of boys and men near or in bars and would engage in informal sex work. This raised three significant problems – first, the young women engaging in sex work were around the bar at all hours of the day, if they were on ARVs, they were likely not adherent on their medication regimen.

Second, since they would not reveal their HIV status to their “sugar daddies,” and since sex was unprotected, they were infecting their partners. Third, in the case of young women who were not infected with HIV- engaging in unprotected work with multiple partners often would lead to their own HIV infection. Young late-teen women are the

44 single largest cohort group of new HIV infections, accounting for 40% of the total new infections in the population (Karim & Baxter, 2019). Lastly, many of these young women were getting pregnant, which created a new negative spiral of poverty and despair in their lives.

“The girls are 16-18, and the men are much older. They call them sugar daddy. Some of them are living in Matero some come from outside. For the girls it is like a business. When the sugar daddy sleeps with them, they give them some money” The term prostitution is placed in quotes here for two specific reasons. Firstly, while it is the term used colloquially in the community, the casual risky sexual behavior described here does not fully align with the general use of the word. Second and more importantly, the most common explanation we heard for this behavior was poverty.

Adolescent development studies have shown how neighborhood poverty, even when controlled for individual SES, impacts youth externalizing behavior, including sexual risk and conduct problems, particularly among girls. In addition, the reduced resources and economic opportunities in slum neighborhoods influence local values norms and foster risky behavior. The young ladies in Matero who were indulging in “prostitution” may well be playing out the harmful effects of the neighborhood proximal stressors in

Matero.

“they are sleeping with different men, and they cannot say who is infected and who is not. Mainly this is because of poverty. Maybe they don’t have food to eat at home. Or they need money for their hair. So, they end up sleeping with men to get what they want. Some sleep with men to even raise their school fees.” Clinic Resources

Clinic counselor – in examining enablers to adherence, research has highlighted clinic counselors and community workers as an intervention that has been fruitful in the past

(N. Ammon, S. Mason, 2018). The Matero Main clinic had one counselor who was responsible for providing counseling for all current and existing patients as well as those coming in for testing. Aunty Mary, as she was fondly referred to by many interviewees, saw over 75 patients each day. This workload permitted her to spend no more than a few minutes with each patient, and there was little time for any meaningful interaction or support to the youth. She would continue to connect with the youth outside of clinic hours to provide support, but these were limited in number. The Matero clinic appeared to have fewer resources for its much higher patient load (slums have a higher HIV prevalence than non-slum urban neighborhoods). In comparison, youth from

Kabulonga reported more in-depth and more personal relationships with the HIV counselors in their local clinic. They spoke about frequent calls to the counselors who were available readily and seeking clarifications and support between medication refills.

Youth in Matero met with the counselor approximately once a year and, in some instances, during their refill appointments.

Community care workers – Among 34 interviews, only two youth reported being visited by community care workers to inquire about adherence and offering support. By contrast, all five youth in the Kabulonga neighborhood reported regular visits from community clinic workers to support their adherence, help with handling side-effects, answer questions, and provide encouragement.

The net of these two clinic resource limitations is that, for the most part, the youths in Matero were left to handle their issues arising from maintaining adherence, the onset of side-effects, and any new opportunistic infections by themselves. When these were brought these up for discussions with the clinic, it occurred only during

46 appointments set up for medication refills. At this time, Zambia is moving to 3-month and 6-month refill cycles – this moved the availability of clinic support for youth in

Matero out even further.

School interruption and education policies

A finding that emerged from multiple interviews highlighted how Zambia public education policies inadvertently contributed to poor HIV medication adherence. Under

Zambian school matriculation guidelines, students have to pass all exams from a particular class (grade) to be promoted to the next class. This meant that a student in 8th class (grade) who failed one or more subjects would not be permitted to proceed to the

9th class and attend school; they would have to stay home for the duration of the following school year and retake and pass the same exam a year later to be promoted. In almost every case, this triggered a domino effect. Often the teenage student at home with no activity to occupy his/her day fell into harmful company and adopted behavior that was detrimental to HIV medication adherence.

“When they stop school, they go straight into beer and drugs. Those who are medication won't have time to take meds because they are on drugs and beer. Most of them also are on sexual activity”. In the case of boys, they reported starting to experiment with smoking marijuana, spending more time with older youth, and joining them in petty theft and truancy. In the case of girls, we heard about instances where they got pregnant or engaged in other behavior that had a detrimental impact on their HIV medication adherence.

Food insecurity

Interruptions in food availability and chronic hunger have been associated with lower adherence (Weiser et al., 2015). Multiple studies across sub-Saharan Africa with a broad

47 cohort of respondents have found a strong association between food insecurity and an inability to maintain adequate adherence with ARV medication. Our findings in this study were similar. A question we asked all of the respondents was simply “how many meals do you have every day.” The answers varied from 1 to 3, and some in between

(“sometimes 1, other times 2”). Even a quick review of those had one meal every day

(“many times only 1” “when my mother can sell all of the cassava we eat two times next day”) revealed youth who were lower on adherence. In one case, a participant lived with his uncle, who was disabled and did not have a job.

In the morning, I went to get some food on credit from the nearby shop. The shop told me that he could not give me... So, I cannot drink my medicines today because I feel dizzy for one hour In this case, they were both dependent on any help from the relatives and neighbors

(separately, the nurse who was part of the interview process confirmed that he had seen the young man begging near the bus stand). ZS also confirmed that he would collect his medication from the clinic on time but was not sure how many times in a week he missed taking his medicines. On the other hand, there were instances where youth reported that their primary caregiver at home (mother or grandmother) would favor them for food (number of meals and servings). MT, for example, said that while their family was “mostly ok” for food if there was less food at home, her mother would give her an extra meal because she was taking ARVs

The family eats two meals daily, but I eat three times. In the morning only I have nshima meal to take medicines

Differences between youth from Matero and Kabulonga on adherence

Having the opportunity to interview youth from a slum compound and a wealthy part of town offered us a more in-depth insight into the way adolescents from two very different neighborhoods described their lived experience with HIV and their efforts to maintain medication. While there were minimal or no discernible differences between the experiences of the youth across the individual and interpersonal domains of the SEM model, several differences surfaced in the community and structural layers.

1. Deeper relationships with the clinic and clinic resources. The clinic in Matero

had one counselor who worked with over 75 patients every day. As a result, there

was less time for providing any kind of personalized or individualized attention

(though the counselors did their best and often called many of the young people

after clinic hours to check in on them). When youth in Matero encountered any

problems relating to medication, side-effects, or had any questions about their

HIV issues, they would wait until their next 90-day refill appointment to reach

the clinic for help. Often it would result in poor adherence or stoppage of ARVs

until the next clinic visit. The situation appeared to be markedly different in

Kabulonga. All of the young people we interviewed there shared with us that they

had a direct relationship with the clinic nurse and counselors in the clinic. Many

told us how they would speak by phone with the counselor at least 1-2 times a

month. GB reported how if she ever had any diarrhea or even a single rash, she

would call the clinic to speak with the nurse about possible side effects. Another

mentioned that though it is not part of the clinic process to test people more often

than two times a year, she would push the clinic staff to get her viral load

measured more often.

2. Youth in Kabulonga tended to trigger clinic support far more quickly. As GB

reported, she missed a dose of ARVs one evening because she was in school and

working on a project with friends. Unhappy that she had missed a single dose,

she called the clinic early the next morning and spent time on the phone with the

counselor to get assured that it would not have catastrophic results.

3. Youth in Kabulonga had a WhatsApp group of young people in their circle to get

together as a support group for discussions about HIV and adherence, share

problems and solutions, and to push the clinic on providing additional assistance.

Something like this was clearly not even possible in Matero, where less than a

third of the 34 youth we interviewed had cell phones.

4. The Kabulonga clinic also organized an activity center and library for young

people to use and engage with the clinic outside of regular appointment hours.

These centers were used for weekly and bi-weekly support group meetings as well

as for ad-hoc drop-in sessions.

5. Having a girlfriend/boyfriend or being in a sexual relationship did not seem to

impact HIV medication adherence among youth in Kabulonga as much as it did

their peers in Matero. In our sample, over half of the youth interviewed in

Kabulonga were in intimate relationships, and all had disclosed their HIV status

to their partners. In each case, the partner was supportive, and in one case, the

partner would accompany her to the clinic for tests and medication refills, etc.

6. Traveling away from home or being away during medication time was mentioned

frequently as a reason for missing ARVs. An easy solution to avoid missing a

day’s ARV medications when traveling even within the city is to carry the day’s

pills. None of the young people in Matero took their day’s ARVs with them –

most explained that they were concerned with being “found out.” All the youth in

Kabulonga reported carrying their medicines with them if they were planning to

be away from home even for a day.

7. While the stigma associated with HIV continues to be a significant issue

impacting the care continuum for all people living with HIV, it appeared to affect

the youth behavior in Matero and Kabulonga somewhat differently. While

adolescents in both neighborhoods held their HIV status secret from almost

everyone outside the family, those in Kabulonga appeared to view anticipated

stigma with less concern and envisioned less drastic outcomes if “found out” or

being discovered as HIV+ compared to their peers in Matero.

8. Finally, students in Matero and Kabulonga were similarly affected by

matriculation guidelines preventing students from being promoted to the next

class if they performed poorly in one or more subjects. As discussed earlier, for

the youth in Matero, this was most often the start of a negative cycle that

impacted their adherence adversely. However, as the interviews progressed in

Kabulonga, we discovered that there were multiple after-school private coaching

classes available for youth who were forced to sit out a year at home. This would

provide an activity to engage the youth during their year at home - potentially

preventing the negative spiral that we uncovered in Matero (often with the youth

starting to drink and/or smoke marijuana or, in the case of girls, get pregnant).

Table 1. Differences in adherence related behavior between youth in Matero and Kabulonga neighborhoods

Youth in Kabulonga:

1. Contact with clinic - had more frequent contact with clinic including between refills 2. Social media - had a WhatsApp group to share information about HIV support events and gatherings 3. Activity center - had an activity center and youth library to meet and frequent 4. Sexual relationships - having a boyfriend/girlfriend seemed to impact adherence less 5. Neighborhood disorder - did not mention insecurity, drugs, insecurity or fear of walking alone to the clinic 6. Carry ARVs. often carried ARVs with them when they traveled and were comfortable taking ARVs outside the home.

How the Slum Neighborhood Appeared to Impact Adherence

Various contextual and spatial units of analysis have been employed in

researching health outcomes, including households, neighborhoods, census tracts, and

metropolitan areas. The choice of the context for studies is often premised on the

availability, structure, and quality of data. This study situates its examination in the

slum neighborhood of Matero. Despite heterogeneity across several dimensions among

its residents, slums represent sociologically meaningful units of influence and offer a

discrete spatial aggregation for analysis and interventions. Previous studies on

adherence have, for the most part, viewed HIV medication adherence as an individual

decision - perhaps constrained by outside factors - nevertheless rational and intentional.

The interviews in this study provided a more in-depth view of the lived experience of

HIV and challenged the assumption that for the youth in Matero, adherence was an

intentional action. Poor adherence emerged not as aberrant or irrational behavior but as

being shaped by community and neighborhood influences and the socio-ecological

environment within which the daily act of taking medication took place.

In examining the findings from this study, the slum neighborhood appeared to impact HIV medication adherence among youth across six broad facets.

Framing

Frames are mental representations of reality and allow for an interpretation of situations and guide action. According to Goffman's (1974) frame theory, individuals interpret and give meaning to their circumstances and experiences through frames of reference. These frames are dynamic, emanate from the contextual reality, and guide action. While frames and framing are often examined and studied at an individual level, communities and broader social entities like the media and institutions also frame or socially interpret situations.

For the youth in Matero, it is easy to see how the trauma of disclosure, the repeated appeal to secrecy at home, “don’t tell anyone,” pervasive neighborhood stigma, and the lack of support in the community provided the frame clues to make sense of their HIV illness. In Matero, the framing of living with HIV appeared to be both consistent and durable, and Goffman’s theory would posit that these frames would, in turn, impact their interpretation and behavior (adherence).

The socially interpreted framing of living with HIV (Bernays, Seeley, Rhodes, &

Mupambireyi, 2015) appeared to manifest differently for the youth in the slum and non- slum neighborhoods. For the most part, the youth in the slum neighborhood had a more dire and harsh view of HIV that was accompanied by a higher level of anticipated stigma. For the participants in the wealthier community, HIV appeared to be framed more as a dominant illness but one that was manageable and chronic, and within their control. In Matero, HIV was as a “death sentence” for which their neighbors would

“mock” them or “laugh” at them. In contrast, GB in the Kabulonga cohort group reflected the framing of the HIV illness there “HIV is part of who I am, just like I write with my left hand.”

Stigma

Stigma is a powerful impediment to all aspects of living with HIV, including disclosure (Maughan-Brown, 2010), adherence (Ware et al., 2009), and quality of life

(Holzemer 2009). HIV related stigma has been observed and studied in its three forms

– enacted (stigma that has been experienced), anticipated (expectations of prejudiced behavior), and internalized (self- endorsing negative feelings and beliefs) and, has been associated with increased levels of anxiety, feelings of hopelessness, powerlessness and depression among adolescents living with HIV.

For the youth, the discursive framing of living with HIV within Matero and their repeated negative experiences in social interactions within the slum community appeared to increase their sense of powerlessness within the social environment. As they related examples of experiencing stigma, it was evident that no participant in our group had been spared. Every one of them had suffered social distress and discrimination

(experienced stigma) within the community from being identified as HIV, and the

Matero neighborhood created a pervasive threatening environment that impacted every part of their daily life. Stigma, however, appeared more forcefully as a persistent possibility (anticipated stigma) – the fear of being discriminated against and publicly devalued if discovered to be HIV+. Anticipated stigma and fear of inadvertent disclosure came through in all interviews and appeared to be a significant factor in the moment to moment decision-making by all the youth. It influenced their willingness to seek help for

54 adherence from others and came in the way of carrying their ARVs with them when they knew they would be away from home. This resulted in frequently skipped doses and poor adherence. Finally, many participants revealed a stigmatized self-identity and self- definition - “haha..if I ever let anyone know I was HIV+, I would not have any friends,” while others expressed internalized feelings of shame and being less than others. SC said that he just wanted “to be away from everyone, and no one should be with me.”

Social Capital

Social capital has been variously conceptualized, defined, and applied in research.

While Putnam (1995) anchored social capital in the richness of trust, reciprocity, and norms of giving within social networks, others have viewed social capital as an economic asset that could be used for computations, much like currency. These scholars, such as

(Capriano, 2008), view social capital as an asset generated through social networks in a community. Social capital within disadvantaged and resource-constrained communities has been found to impact the health and well-being of its members through reciprocity, safety nets, interpersonal assistance, and emotional support and serve as a bulwark against adversity. Social capital and cohesion are intrinsic dynamics within communities whose presence (or absence) has been associated with increased psychological support and wellbeing (or anxiety and stress). In disadvantaged communities lacking in formal institutional resources, social capital may be critical for providing psychosocial support and may serve as a foil against the stressors in the neighborhood.

The picture of Matero that emerged from the interviews was that of a community lacking in social capital. Many families were providing both emotional (by supporting

55 and encouraging the youth to take their medication daily) and instrumental support (by helping with the mechanics of adherence including reminding, giving water and medicine, and providing additional food support at home). Yet, the broader Matero community outside their homes presented a harsh social environment for all the youth, starting with neighbors who did not respect their privacy and were unwilling to provide support. Nearly two-thirds of the participants reported that their immediate neighbors presented a threat and a permanent and predictable source of stigma.

In addition to neighbors, the social environment within Matero was both pervasively threatening (to the youth living with HIV) and unsupportive. When asked, nearly all of the participants remarked that if they were ever in need of any assistance outside their homes, they would not be helped in Matero if they made public their HIV status. The community has always been one of the pillars of African life. Anecdotal and research writings have highlighted the role of the traditional African community in performing the critical role of collective socialization – the strong network of support extended between families that created an environment of care and safety to raise all the children in a neighborhood. In healthy communities, collective socialization has been found to serve as a buttress against adverse neighborhood effects. Yet, there emerged no evidence of a strong social environment and mutual support in Matero in any of the interviews.

On the contrary, the stigmatizing nature of HIV in the Matero slum community prima- facie appears to have diminished the collective socialization that was inherent in African families.

Table 2. Neighborhood factors that impacted adherence

Phenomenon of Factors Interest Impact on Adherence

Physical

The neighborhood was called dirty, crowded, noisy, stressful, Environment with residents repeatedly sick with infections, stated as stressful

Disorder "Too many" Bars, drugs, and “prostitution” everywhere

High levels of crime, mugging, petty theft. Some youth were scared to walk out alone. Others needed someone to accompany Violence and crime to the clinic

Houses breaking in the rain and resident dislocation, homes Poor quality housing getting flooded and streets impassable in the rain

Social

High levels of stigma and poor social capital to provide Social capital community support for adherence

Peer networks negatively influence adherence

provide negative social support. Every respondent was wary of Neighbors neighbors and hid their status from their neighbors

having a boy/girlfriend impacted adherence negatively and Romantic relationship sometimes catastrophically

Resource

Clinic counselor one counselor for all age groups ~75 patients/day

Limited health system only 2 respondents reported follow-up from community health follow-up outside clinic workers

in case of medication problems youth often missed doses till the Inadequate clinic support next refill

hunger, poverty and uncertainty around food immediately Food insecurity impacted aherence

education policies create negative environment, no alternative School interruption but to sit at home for a year

Clinic resource

For most urban residents, their primary health care is local. In general, slums are populated by people with less power, by migrants, and by those with reduced access to public resources (Davis, 2004). Matero is no different. The government clinic in Matero emerged as under-resourced to support the youth in their HIV catchment area when compared to a similar government clinic in Kabulonga. The single full-time counselor in the Matero clinic handled over 75 patients daily across all age groups and all phases of the HIV care continuum (from pre and post-test counseling through medication and follow up). Apart from a single weekly support group meeting for the entire community of Matero (with an estimated 1500 youth on HIV medication), there were no other resources available for support. In addition, a number of the youth in Matero mentioned long wait times at the clinic for ARV refills and in at least a dozen instances, being treated abruptly by clinic staff and feeling “discouraged.” By contrast, the clinics in Kabulonga had counselors who were available for phone or in-person counseling at short notice, hosted multiple support group meetings every week, and provided a library, a resource center, and a WhatsApp communication group to keep everyone connected and informed.

Neighborhood disorder

Neighborhoods with violence and lack of safety have been found to impact health in various ways (Latkin & Curry, 2003; Surratt, Kurtz, Levi-minzi, & Chen, 2015).

Matero with its proliferation of bars, public drinking, open drug use in the streets, publicly visible sex exchange, and a persistent threat of violence and crime presented a neighborhood with a great deal of disorder. The Matero neighborhood directly impacted

58 many facets of the adherence behavior, including visiting the clinic for refills and returning home to take ARVs on time every evening. It was well known in the community that many youths in Matero sold their HIV medication in bars to patrons looking for an added buzz (a commonly reported side effect of some ARVs is lightheadedness, particularly if taken on an empty stomach). Youth selling their ARVs were ipso-facto setting up for poor adherence. Researchers have studied and highlighted the mediating roles of various factors, including psychological and physiological stress created by neighborhood disorder. It is not the role of this research effort to conceptualize these pathways. However, the interviews highlighted how the pervasive presence of neighborhood disorder and dysfunctionality in Matero impeded adherence levels and created high-risk sexual, alcohol, and drug use behaviors.

Physical slum neighborhood

The physical “built” neighborhood appeared to also play a role in impacting adherence. Poorly constructed houses were being damaged in the rain, and entire families were often forced to live in a single room. In these situations, inevitably, there was no safe place to store the ARVs or consume them in private, and this impacted medication adherence immediately. In one case, BM had moved to her aunt’s house when a room in their home collapsed and was separated from her ARVs, albeit for a few days. Also, the dirt roads and the lack of drainage made parts of the Matero neighborhood impassable during rains (e.g., when this research was being conducted) and the swamp adjacent to it often overflowed into homes creating challenging living conditions. With little or no street lighting at night away from the main street, several

59 participants reported that they did not feel safe to step out of their home or walk at night after 1900 hours.

Some additional thoughts on the methodology employed

This section will address a few summary thoughts on our experience with the semi-structured interview process as we discussed the topic of adherence with adolescent participants.

a. Adherence to ARVs was a question that was loaded with affect for most of the

youth, and as the interviews progressed we heard how many of the youth had

been admonished by their caregivers for missing medication and, in a few

instances by the nurses, care workers and the doctor in the clinic. Asking

about adherence directly – any variant of “how many times (in a

week/month) do you miss taking your medicine” elicited an automatic non-

response from almost every participant. They never missed their medicines.

However, asking the same question indirectly with a tone of understanding –

along the lines of “taking medicines every day without fail is not easy, and

some people miss it sometimes. Has it ever happened that you had to miss

medicine in the night?” provide a broader set of responses. Through the

conversation (average length 55 minutes), they all warmed up and dropped

multiple hints and messages that they would often delay or miss their

medicines. The two interviewers worked during the debrief discussions to go

over all the instances where the participant had shared information that

provided an insight into their adherence to categorize participants into

poor/fair/good adherence categories.

b. When we started the interviews, we conducted the first few in a small

discussion room in a medical center. This inevitably created a formal context

with inherent power dynamics. The paternalism of public health has been

highlighted by many researchers (Buchanan, 2008), and we wanted to

minimize its influence. After the first two days of interviews (5 interviews),

the conversations were moved out to the porch and under a tree. A few plastic

chairs and a bench were set up to make a small circle. That seemed to relax

the participants, and we did witness a more free-flowing conversation and less

of a question-answer session.

c. Often when we found it hard to elicit information about the participant, we

altered the question to be about a third person. We asked them to think about

other young people “just like them” and if in their knowledge these young

people “ever had to miss medicines” etc. This inevitably elicited a more

detailed response.

d. Keeping the interviews bilingual, unstructured, and conversation-like with

some laughter and local jokes allowed for the participants to relax into the

discussion.

e. At the outset, we made it clear that this was a confidential conversation, and

nothing the participants said during this meeting would be shared with

anyone outside of the room – including the clinic or their families. In a few

cases, we heard of poor adherence, in two cases about indulging in truant

behavior and petty theft, and in one case about excessive drinking. In all

cases, during the post-interview debrief, the researchers discussed the

situation and negotiated the ethical dilemma of needing to inform the clinic

versus remaining faithful to our promise of confidentiality. In each case, we

adhered to our assurances of privacy and did not reveal any details to anyone

outside the interviews. In 9 cases, the youth asked for our thoughts about

whether adherence would become easier later in life, and if a cure for HIV

would be found soon. In each case, we concluded the interview and then

answered these questions to the best of our knowledge.

f. Lastly, both the interviewers have worked in Zambia on HIV related issues for

almost two decades. Yet, a few of the stories were intensely moving, and

hearing first-person narrations from young men and women about their lived

experience with HIV presented a personal challenge to separate our emotions

as fellow humans from our roles as researchers – for the duration of the

interview. In multiple instances, our eyes filled up when we were debriefing

and recollecting the conversations.

Chapter 3

Conclusion

The core question within this thesis is if youth living in slums have an unimpeded agency for their adherence behavior. Are adolescents empowered by adequate knowledge about HIV (which they all were) and with access to medications, able to determine the course of their adherence history when living in a slum? Prima facie, there appears to be evidence of the Matero neighborhood impacting adherence behavior and the ability of the youth to maintain lifelong adherence.

HIV is a socially constructed illness, and slums are socially constructed neighborhoods. We became aware through the interviews how relentless stigmatization, neighborhood dysfunction, social norms around being HIV+, and seeming lack of collective efficacy in Matero, impacted medication adherence. These social factors framed the illness, contextualized the adherence behavior, and mediated the intention of youth to take their medication every day. We found that the physical characteristics of the neighborhood, including the poorly constructed houses, the flooded and treacherous side streets, the lack of sanitation, and the high prevalence of infectious diseases negatively impacted daily adherence behavior. The environmental characteristics in

Matero, including crime, drugs, bars, male predatory sexual behavior, violence, and a persistent threat of harm directly and indirectly impacted adherence behavior daily.

A fourth factor that we did not set out to evaluate but emerged during our analysis was the history of the Matero slum and its influence on adherence behavior

(epidemics in general and the HIV epidemic in particular has been foregrounded by scholars against historic antecedents (Fassin, 2002)). Compounds or komboni in local

Nyanja, are the informal housing neighborhoods that today are home to 70% of Lusaka’s population. The Matero compound is itself an outcome of the 1948 legislation. It has a diversity of structures of varying quality from asbestos, plastic sheeting, burlap bags to brick. As the population of Lusaka city has grown over the last twenty years, a new form of biogeography has evolved. The more affluent neighborhoods, settled by the white residents, Asians, and South Africans, have preserved their planned communities with wide roads and private homes with high walls and large lawns. Large portions of the rest of the city have grown haphazardly and are comprised of dusty, treeless compounds populated by shacks and informal settlement expansions. It is rumored that Matero’s name comes from the word matelo – meaning outside, a name that literally and metaphorically speaks to its marginalization. The history of Matero, visible in its unplanned spatial expansion, a dearth of public services, and limited access to employment opportunities, appeared to impact the youth in multiple ways. In carefully examining the interview transcripts, what emerged was an undercurrent of passive fatalism, apathy, and an absence of future orientation. Only 3 participants spoke about the future and any long-term plans for themselves (contrast with youth in Kabulonga, one of who was working on getting entrance into a medical college and in one case was already in a science college). The youth in Matero were instead being drawn to the opportunity for theft, and petty crimes and the normalization of this hustling came across through the interviews as a particular form of komboni culture (often glorified in songs). The historically entrenched marginalization in Matero seemed to permeate the thinking as young people set out to make money fast and live for the moment. Instead of valuing long term health, the young men valued immediate gratification in bars, and the young women with limited opportunity for experiencing material comfort sought some

64 economic and social standing by cultivating the patronage of sugar daddies. Why is this important? Because future orientation and having plans for the future have been shown to impact health outcomes, health-seeking behavior, and optimism (Turan et al. 2017;

Haberer 2016).

Within the limitations of the study design (discussed in the following sections), the slum neighborhood appeared to impact adherence behavior among adolescents adversely. The spatial clustering of adverse structural and community factors created a neighborhood of ‘concentrated disadvantage’ (Jargowsky & Tursi, 2015) for adolescents living with HIV. Stigma, low social capital, neighborhood disorder, and structural disadvantages seemingly came together in this particular instance to create an additional layer of challenges for youth navigating the lifelong demands of HIV adherence. As recent studies reveal, youth HIV related mortality arising from poor medication adherence now threatens the gains made over the last two decades in controlling the HIV epidemic (Kharsany & Karim, 2016). The findings here suggest that this crisis may not be an evenly distributed problem spatially but may instead be more concentrated in slum neighborhoods than others with implications for public health efforts and adherence intervention programs. Youth HIV adherence programs may need to look different in slums with less focus on individual behavior modification and a greater emphasis on righting structural inequities, including resources in the clinic, addressing neighborhood disorder, and revisiting education and school matriculation policies.

Future directions

Most academic theses end with a call for more research. The temptation to catalog a list of potential areas of research will be avoided and this section will focus instead on (a) an issue that repeatedly surfaced during the interviews and raised significant concern for the researcher, and (b) two opportunities for designing interventions in the Matero compound to support local youth living with HIV. The two interventions proposed here represent a fertile subset of opportunities to extend the work of this study immediately. This section begins with an overall observation on working with youth living with HIV.

Participatory approach in working with adolescents living with HIV

The stakes are particularly high for adolescents in a slum neighborhood navigating the transition into adulthood alongside the demands of ARV adherence. This cohort group continues to bear a disproportionate burden of HIV-related mortality.

Their experiences of living with HIV are personal and contextual, and their responses are colored by social, community, and neighborhood factors in Matero. Their age renders them with less political power in public processes, and among all age demographics, they present the most adverse trends in HIV infection and mortality at this time. For all of the youth we interviewed, living with HIV dominated their lives, and the daily ritual of taking ARVs did not appear to be a trivial activity for any of them– even for those who were adherent. The act of having to take ARVs was associated with varying feelings of anxiety and stress. In such situations, participatory approaches may be the most effective in examining HIV medication adherence interventions targeted toward adolescents. Participatory approaches have been widely employed in research,

66 community action, and collective problem solving (Macdonald, 2012). The role of the external “expert” participant – whether a researcher or a subject-matter expert becomes one of a facilitator. The interaction between the stakeholders and the researcher/designer co-creates the tools for understanding and change. While this approach is less common in public health design, it is not absent, and Baum (2016) presents a broad review of some examples. What participatory research brings that traditional expert-initiated designs miss out is the first-person incorporation of human understanding, complexity, and context. As Marcus et al. outline, participatory approaches can be used for not just designing interventions but for implementation, fine-tuning and evaluating outcomes.

For the research and adherence intervention ideas discussed next, a participatory design process with adolescents may be the most fruitful approach to adopt.

Research - Mental Health of adolescents living with HIV in slums

Research on neighborhood effects (particularly poverty, neighborhood disorder, and lack of collective efficacy) on adolescents has highlighted impacts on normative and non-normative development of adolescents, identity formation, and risky behavior

(McBride Murry, Berkel, Gaylord-Harden, Copeland-Linder, & Nation, 2011). For youth living with HIV, adjusting to their newly disclosed HIV status and developing adherence skills while negotiating the demands of adolescent identity development may prove a significant challenge. Indeed, it can be argued that for youth living with HIV, building adherence skills, and living with HIV may be an additional necessary developmental outcome of adolescence. Three aspects of adolescent psychology – identity development, developing an understanding of normative and non-normative boundaries, and

67 internalizing and externalizing behavior- are particularly relevant to the issue of living with HIV and maintaining HIV adherence. Among all of the adolescent developmental outcomes, identity development may be the most critical in understanding the lived experience of HIV for youth. Research has shown that neighborhood disorder, crime, stigma, and poverty impact the crucial process of identity exploration and formation in youth (McBride Murry et al., 2011). We know poor and stressed neighborhoods affect adolescent development milestones significantly, distorting understandings of normative and non-normative behavior, impacting identity development, and triggering pathological internalizing behaviors. In addition, research has shown that stressful neighborhood conditions impact mental health, in particular depression, among youth by repeated exposure to stress, negative social interactions, stigma, and repeatedly highlighting to the youth their vulnerability.

Youth living with HIV have unique and additional challenges as they navigate the developmental issues of adolescence. Living with a life-threatening illness, bearing the burden of hiding a socially stigmatizing disease, and being unable to seek social support for it can create significant stress in their lives. At a medication level, frustration and helplessness from side-effects of antiretroviral medication have been found to trigger mental health issues, including depression (Rong et al. 2017). At the level of the individual, being orphaned, and experiencing traumatic HIV disclosure has been repeatedly associated with PTSD and depression (Cluver, Orkin, Gardner, & Boyes,

2012). Unfortunately, these two conditions often coexist, and HIV orphans living with extended family are known to have been inadvertently disclosed without preparation or support. Similarly, published research on neighboring South Africa has documented

68 high rates of domestic abuse among HIV infected children and its association with mental health problems (Boyes, Cluver, Meinck, Casale, & Newnham, 2018).

Twenty of the 34 youth in our sample were orphans. Many had only a faint recollection of their parents, while others had lost them more recently. Multiple cross- sectional studies have addressed the psychological suffering from AIDS-related orphanhood (losing a parent to AIDS), most cross-sectionally. In one of the few published longitudinal studies addressing this issue, Cluver et al. (2012) highlight how

AIDS-orphaned adolescents experienced more severe and persistent mental health problems over an extended period compared to non-orphans and even other orphans who had lost their parents to accidents or violence.

However, it is the pervasive effect of community-wide factors similar to those found in this study (including being bullied, harassed, threatened and having to live in a persistent and heightened state of anticipated stigma) that have been linked most often to a range of mental health issues (Kim 2015, Aresnault 2008). Experiencing stigma continuously within the community has been shown to have a weathering effect and has been associated with depression (Corburn, 2017; Williamson, Mahmood, Kuhn, &

Thames, 2017). In addition, in our interviews, self-hatred and internalized stigma came through in a number of the interviews, and these factors have been associated with depression and anxiety in adolescents. With reduced resources in the clinics in Matero, we heard of multiple instances of emotionally hurtful and negative interactions with clinic staff during visits for refills or tests. Multiple studies have confirmed the association of negative health worker and clinic interactions with mental health issues among adolescents.

While building stronger adherence programs for youth would be a logical extension of this research, this researcher believes there is an urgent need to address more deliberately, the mental health of adolescents living with HIV in slum neighborhoods.

Intervention - Social Support for adolescents living with HIV

Interventions based on different forms of social support have been recommended for supporting adherence. Often these are implemented by NGOs and local clinics and involve (a) counselors in clinics, (b) support groups organized by NGOs or clinics, and

(c) mobile-phone-based reminder apps and arrangements. These interviews revealed a greater need for both emotional and instrumental forms of support. Where present, families provided both emotional and instrumental support. However, for the majority of the youth, family support was not available. As we listened to these participants, emotional support often appeared to be the more urgent need - for providing the necessary environment to build their new identity and navigate stigma and the demands of adolescent development.

In Matero, there appeared to be almost no social support network outside of the home for supporting HIV adherence. An immediate community response could be to strengthen the neighborhood resources to provide support (particularly emotional support) through several mechanisms:

a. Provide additional counselors in the Matero clinic for walk-in visits.

b. Provide a toll-free number for youth to call to speak with a counselor. A

centralized call center with counselors could cover multiple neighborhoods.

c. Create and expand the current once-a-week support group to multiple peer-led,

adolescent-specific support groups in different parts of Matero.

d. For youth with smartphones, provide reminder apps and the ability to chat

discreetly with counselors. Digital interventions have shown effectiveness in

tuberculosis and HIV medication adherence in SSA (Yoeli et al., 2019). Ideally,

however, digital reminder tools work where the other necessary environmental

conditions to maintain good adherence are present.

Intervention - AI-based tool for improving adherence

In addition to uncovering influences, this study presents an opportunity to review our current approaches to tracking adherence among adolescents living with HIV. Since

HIV medication adherence is a lifelong behavior that is influenced by context, it may be more valuable to create adherence profiles for adolescents in place of discrete measures addressing individual adherence factors.

Haberer et al. (Haberer et al., 2017) call for approaches to focus adherence interventions toward patients who need them most, as a way to concentrate resources and efforts effectively. An artificial intelligence (AI) enabled adherence support tool could identify in near real-time who among the youth is likely to default on ART adherence. There are ~ 1500 adolescents on ART in the Matero clinic, and an AI tool could permit the resource-constrained Matero clinic to intervene in near real-time and prevent drop off in adherence. The primary assumption enabling this solution is that adherence is a predictable behavior influenced by a complex interaction of personal, social, and environmental factors. For instance, from the interviews in this study, here are ten factors that appeared to impact adherence for youth in Matero.

1. How do they view their HIV situation? Why are they taking their medication

today? Do they feel it is useful?

2. Do they have family support? Is there someone at home who provides daily

support?

3. What activities are planned for the time of their ARV medication time today?

4. Are they at home or away from home today? Are they expected to travel soon?

5. Are they in a romantic relationship? Are they living or with a romantic partner

today?

6. Do they have a reminder mechanism set up?

7. Did they eat today? How many meals did they eat/day this week?

8. Is there someone else at home who takes ARVs?

9. Are they alone today?

10. Did they go to school that day? Are they going to school that day?

In place of multifactor explanatory causal pathway models, an AI tool may be able to learn the pattern of these influences and identify who among the youth is likely to default on adherence soon.

The AI algorithm could be built and trained on three sources of data (a)

SmartCare, Zambia’s national EMR platform developed and rolled out in partnership with the US Centers for Disease Control; (b) Cell phone automated data from participants’ cell phones and collected with their permission; (c) Crowdsourced data from all youth participants in the program.

EMR - Zambia has fully implemented a national EMR system that is in use by all government clinics, including the Matero clinic and records visits, opportunistic

72 infections, and ARV medication refills. Time/date/location information is also part of the data.

Cell phone data - In our interviews, approximately 30% of the youth in the Matero compound had at least a modest Android cellphone that all include a “find my phone” app from Google.

Crowdsource - using a participatory research approach, even a small a group of ~20 youth living with HIV can design an app that allows them to communicate with the clinic - confirm if they have taken or missed their ART medication, send messages, and chat with the clinic nurse and community health workers.

The clinic support AI tool would input a continuous flow of information from each participant's phone (GPS location, phone usage data, including time and location).

The EMR data would provide both individual patient data as well as local/city/national cohort data for AYA. The youth would interact with the app to provide information on medication defaults, and other subjective personal responses (e.g., mood state, feelings of demotivation, frustration). All input would be interpreted using natural language processing and sentiment analysis of the messages. All data would be time and location stamped. The tool could learn to identify patterns and continuously score each participant on a “potential to default in the coming week” metric and trigger clinic support/involvement.

Limitations

The study and its conclusions must be viewed in light of its various limitations.

Six broad limitations of this study are discussed below.

First, this study is inherently limited by the methodology employed, the context for the research design, and the cross-sectional nature of the study timeline. The study was conducted with 34 youth in one slum neighborhood in Lusaka and a fewer number of participants from a wealthier area of the city. Both chosen neighborhoods were stand- ins for their socio-spatial role in the study design. While Matero is by far the largest and oldest slum in Lusaka, there is a wide variance in the quality of construction, physical infrastructure, and availability of water and sanitation across Matero. Our interviewees were from the five compounds that comprise Matero. Similarly, Kabulonga, while wealthy and the least dense neighborhood in Lusaka also has pockets of middle- and lower-class homes.

Second, our criteria for selecting participants was based on a convenience sample of 50 or so names supplied by the Matero Care Center. While the Matero Care Center was requested to select participants randomly from its list of patients, there was no post-selection rigor applied to ensure that this request was followed. It is possible that the chosen participants did not represent a truly random sample from the list of 1500 plus patients being treated by the Matero clinic.

Third, the interviews were conducted to learn as much of the lived HIV experience for each youth as we could in one sitting. They were, in many ways, a snapshot view of the individual’s HIV life and were likely highly subject to the mood and frame of mind of the participant on that particular day. At this time, HIV is a permanent diagnosis, and adherence is a lifelong process – attempting to get an understanding of lifelong behavior through a single sitting is inadequate and potentially skewed.

Adolescents are prone to social desirability biases in their responses, particularly when discussing behaviors such as ARV adherence or clinic attendance.

Fourth, this study was concerned with examining if the spatial neighborhood of the slum impacted HIV medication adherence among adolescents. It did not set out to build a causal model of how different neighborhood influences played a role in affecting adherence. It did not also attempt to differentiate between the effects of living in the slum from other individual-level effects. That would require multi-level analysis and the hypothesizing and testing of causal models. This study has primarily restricted itself to an in-depth understanding of the lived experience of HIV among youth in a slum.

Additionally, all of the factors discussed here are unscaled in size and scope and have been presented even-handedly. Non-linearity effects would suggest that some of these factors and others just below the threshold of discussion (in this thesis) may have dramatically large effects as they grow. For instance, while many of the participants in this study were navigating poverty effectively to maintain good adherence, research in communities has highlighted how factors such as crime and poverty impact health outcomes nonlinearly.

Fifth, we did not employ objective measures to assess the neighborhood’s characteristics. Our understanding of the extent of stigma, dysfunctional neighbors, and perceived violence, was all gathered from the interviews. In other words, the same sources (the youth participants) were providing us information on the potential influencing variables (e.g., level of violence) and the variable of interest (adherence) we were studying. This single sourcing of dependent and independent variables is known to amplify effect sizes. Youth perception of stigma and social and other neighborhood

75 barriers to adherence may not reflect the true magnitudes of these factors. We have not addressed this limitation within the study or the discussion sections.

Finally, our interviews were with youth infected at birth and taking ARVs since their childhood. While this group represents the vast majority of teenagers living with

HIV, it is essential to record that we did not have any youth in our sample who had been infected more recently through sexual transmission or intravenous drug use. The adherence considerations and behavior of the two groups may be different and presents a limitation to the generalizability of this study.

Epilogue

Slums are spatial constructs but, at the same time, are also economic, political, and social entities. No two slums are the same, and as living products of policy and history, slums also evolve across time. All of this adds multiple layers of additional effort in creating any universally applicable ‘slum’ model of adherence and in our ability to generalize findings across slums. However, there is also much that is common to slum neighborhoods that may permit creating an emic understanding that is meaningful beyond specific contexts. Examining adherence among youth in one community

(Matero), this study shines some light on the importance of including the spatial neighborhood in understanding something as seemingly rational as medication adherence for a life-threatening illness.

Any discussion about slums, particularly in the African context, is fraught with the risk of presenting a catch-all explanation. The dense urban slum is a metonym for the African city and is often a visual and narrative stand-in for everything that is wrong in the continent - a perceptual structure that reduces entire systems of complex factors to a stereotypical spatial construct. As cities like Lusaka increasingly become the population centers in Africa, two-thirds of their residents now live in slums like Matero.

Along with increasing populations, these slums will be impacted by and, in turn, will affect the environment and health of their urban geography.

While the physical, environmental, infrastructural, and political dimensions of

Matero appeared to impact adherence behavior, one factor that stood out was the social environment. Repeatedly, our interviews revealed a lack of an underlying social support structure in Matero for those living with HIV. Those living with HIV were, for the most

77 part leading isolated social lives when it came to their HIV infection. Unlike tuberculosis (another stigmatizing illness), which often is an episodic condition, at this time, HIV is a lifelong constant, and to navigate it alone, every day, may ask more from adolescents than their store of life skills can deliver.

Even Matero, with all its shortcomings, has a rich array of NGOs, social organizations, and self-help groups delivering various packages of services. The church plays a dominant role – during the Covid-19 shutdown in place now, churches have stepped in to provide emotional, material, and medical support to the citizens. However, in the case of HIV, even the church is absent. This is ironic, given that the estimated prevalence of HIV in Matero is over 10%. Matero’s dense population has often served as an asset, including as recently as the cholera epidemic of 2018 yet creates a socially perilous environment for youth with HIV. How must a neighborhood deploy its dense social networks and its substantial social capital to support its youth living with HIV?

The health of slum residents and enabling healthy slums within healthy cities is one of the primary urban challenges for the coming decades. On the one hand, our rich understanding of social determinants of health allows us to examine how factors arising from living in a slum shape health outcomes. On the other, narrowing our understanding to individual determinants of health (often revealed through multi-level analyses) risks perpetuating a blind spot that obscures the lived life within a slum in all its dimensions. Successful health interventions may require an understanding of the lived situation and need both a slum-centered and a disease-centered approach. The work of urban planners informs the former, while the latter largely remains the domain of physicians, scientists, and public health experts. Practitioners of public health in

78 slums will have to become students of complexity and masters of asking the right questions to implement lasting change.

Appendix A

Semi-structured interview guidelines and sample questions Primary goal: to understand the experience of managing their own HIV medication while living in the Matero neighborhood. This will be a semi-structured interview with each participant. It will be held in the premises of Matero Care Center (a local care center that each of the participants is familiar with and visits regularly). In addition to the interviewer only one staff from the MCC will be in the room). Verbal consent – Thank you. Would you like to participate in this interview? It will take between 45 minutes and one-hour max. Is it ok if we take notes while you speak? If no, we will not take notes. Read verbal consent document. 1. Background information a. Age? Note gender. b. Please tell me a little bit about yourself. Prompts and follow ups would include questions about their schooling, “do you go to school? Which one? Etc. 2. Home and family a. Please tell me a little bit about your family? Follow up and prompts would include: Who else lives with you? How big is your family? b. Please tell me a little bit about your home? Where is it? How big is it? Prompts would include number of rooms? What about water? Electricity? c. Who else lives in the house? Are there anyone one else in the home who is HIV+ or taking ARVs? Does anyone else know that you are taking ARVs? d. Who is the person you trust the most? Who is the person who is most supportive to you in your life? e. How many meals do you eat? f. Is there anything else you would like to share about your home and family? Are you happy? If there is anything you could change what would it be? 3. Questions about their HIV status (including Disclosure): a. Is it ok if I ask you a few questions about your HIV status? If no, then proceed to thank them and close the interview. b. When did you first discover that you were HIV positive? How did you discover that you were HIV positive? Follow ups would include: please tell me about who told you about it? How old were you when you discovered? What were you told? Where were you living at that time? c. Who told you about being HIV+? What did they say? d. How did you feel? e. If we have to tell children that they are HIV+ how should we do it? Do you have any advice for us?

f. Is there anything else you would like to share about your HIV status? 4. Questions about their medication management (Adherence behavior) a. Is it ok if I ask you a few questions about taking HIV medication? b. Are you responsible for taking your medications? How often do you have to take them? What time do you take them? c. Taking medicines daily is not easy. Even though you want to take medicines daily sometimes you are not able to take it. Tell me how it happens? Do you ever do anything to remind yourself? d. Where do you keep your medicines at home? Where do you take your medicines? Follow ups would include questions like What do you do when you travel? Do you carry your medicines with you? e. When you accidentally forget to take it, why do you think it happens? f. Is there anything else you would like to share with us about taking medicines? 5. Questions about their neighborhood a. Is it ok if I ask you a few questions about your neighborhood? b. Please tell me a little about your neighborhood? Followups would include questions about crowd, noise levels, traffic? c. Please tell me a little about how you feel living in Matero? Follow ups would include What do you specifically like about that..? What do you specifically dislike about that..? Do you ever feel scared for your safety? In your opinion what are some things that can be done to solve the ..problem you just mentioned? d. What do people like you and your friends feel about your neighborhood? Follow ups would include Why do they feel that way? What do they like about the neighborhood? e. If someone is coming to live in Matero, what would you tell them about the community? 6. Questions about friends and social networks? a. Is it ok if I ask you a few questions about friends? b. Tell me a little about friends? How many close friends do you say you have? Tell me a little about the time you spend with your friends? c. Who else do you spend time with? Who else do you like to spend time with? Follow ups would include questions like Please tell me more about that person? What do you like about spending time with them? d. Do any of your friends know you are HIV+? Who knows it? How did they come to know? What was their reaction? Among your friends is there anyone who encourages you to take your medication and is supportive? e. Do you have any friends who are HIV+? Are they on ARV? If you were to advice a friend who is going to discover they are HIV+ what would you tell them? f. Do you have a boyfriend/girlfriend? Ask if they are sexually active? Is their boyfriend/girlfriend HIV+? Are they able to use protection? Have they heard of PrEP? What have they heard?

g. Is there anything else about your friends and spending time with friends that you would like to share? 7. Questions about Clinic interaction a. Is it ok if I ask you a few questions about going to the clinic to get your medicines? b. Are you responsible for collecting your medicines? How often do you go to collect medicines? Please tell me a little about collecting medicines from the Matero clinic. Do you go alone? Why? Is there a particular day in the month or time when you go to collect medications? c. When you go to the clinic, what is the process like? Who do you meet? Do you have to stand in line? d. What do you like or don’t like about the experience of collecting medicines from the clinic? e. Is there anyone from the clinic who is in touch with you? Follow ups include, Who? When and how often do they get in touch with you? Can you tell me a little bit about the interaction with this person? f. In your opinion, how would you like the process of collecting medicines from the clinic to happen? g. In your opinion, how would you like the process of clinic workers keeping in touch with you outside of the clinic to happen? Overall, the interview will be semi-structured. The interviewer and the MCC care worker will take care to ensure that if the participant wishes to terminate the interview at any time or not answer any question at any time, the interview is closed immediately.

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