Children As Caregivers

Front matter

THE GLOBAL FIGHT AGAINST ~ TUBERCULOSIS AND HIV IN ZAMBIA

THE RUTGERS SERIES IN CHILDHOOD STUDIES

The Rutgers Series in Childhood Studies is dedicated to increasing our understanding of children and childhoods throughout the world, reflecting a perspective that highlights cultural dimensions of the human experience. The books in this series are intended for students, scholars, practitioners, and those who formulate policies that affect children’s everyday lives and futures.

Contents

Acknowledgments ix

Residence and Relationships 47 Between Silence and Disclosure 79 Following the Medicine 101

Care by Women and Children 125 Children and Global Health 145 Postscript: Childhood Tuberculosis 157

Introduction

Maureen Nkhoma opened her eyes as I walked into her yard. Grabbing ahold of the well-worn quilt that covered her, she raised her head to acknowledge me. Her children, eight-year-old Loveness and twelve-year-old Bwalya, were hanging laundry nearby. She directed them to prepare the sitting room in their three-room house. “Outside is no good for a visit,” she told me, as the wind swept dirt from the bare ground. It was a crisp August morning in Zambia's capital city, Lusaka.

“Get in,” Maureen said, when she saw me hesitate at the door to her house. I had been watching her as she rose slowly on legs weakened from extended sickness and disuse. She walked toward the house with her gaze to the ground. Each uncertain step she took was filled with an effort that, I realized only later, she did not want me to see. At her insistence, I went into the sitting room ahead of her and took a seat across from Loveness and Bwalya. We sat in silence until Maureen joined us.

Maureen had tuberculosis (TB), a diagnosis that came after months of weight loss, fever, and night sweats, and a cough that had lingered for much too long. For the past thirty years, TB has ranked among the most pressing infectious diseases in the world, its presence and deadliness driven by political upheaval, public health neglect, poverty, and under-resourced healthcare systems, and made so much worse by the emergence of the HIV epidemic.’ Globally, an estimated 9 million people become sick with and 1.5 million people die from the disease each year (UNOPS 2015).

TB transcends national borders.’ Globalization has increased the mobility of people, and complicated notions that TB—or any infectious disease—will remain confined to a particular nation or region. At the same time, TB offers a stark example of how global politics and policies have carved up the world in unequal ways, structuring who suffers from infectious diseases, who gets treatment, and who recovers.* Ninety-five percent of the deaths attributed to TB, for example, happen in middle- and low-income countries (World Health Organization 2015).

HIV and TB are an especially lethal combination in resource-poor areas. In Zambia, where Maureen Nkhoma lives, the incidence of TB rose dramatically in the 1980s, and in conjunction with the emergence and growing presence of HIV. Debt to external lenders along with international policy reforms were gutting Zambias healthcare system during the 1980s and 1990s, leaving the country unequipped to deal with the dual epidemic. TB medications ran short in Zambia during the latter part of the twentieth century. Antiretroviral therapy (ART) for HIV was unavailable to most people in the country until 2004, the year that ART was rolled out in government health clinics. People with HIV died ugly deaths, and these deaths were often the result of TB.‘

Maureen's family was preparing for Maureen's funeral, her aging mother told me, when “everything changed.” After months of undiagnosed illness, Maureen was hospitalized and tested positive for HIV. She was diagnosed with TB two weeks later, after her condition continued to decline while in the hospital.” In previous years, both diagnoses would have affirmed the family’s concerns that Maureen would soon die. However, by 2007, the year that Maureen was diagnosed, medications for TB and HIV were widely available in Zambia at no cost to patients.

The new availability of no-cost medications for HIV and TB was not unique to Zambia. At the turn of the twenty-first century, significant global shifts in treatment policies, global markets, and funding streams were reconfiguring access to treatment around the world.’ These shifts offered Maureen, like so many of her contemporaries in Zambia and elsewhere, hope for a “second chance at life” once diagnosed.’ Second chances, though, are not a given in this new treatmentfocused environment. As anthropologist Susan Reynolds Whyte has observed in the context of the rollout of ART in Uganda: “To realize the second chances, care must be given and taken continuously” (2014a, 2).

On the day that I visited Maureen and her children, Maureen did not yet know if she would have a second chance at life. She labored to reach the room where I waited with Loveness and Bwalya. When she finally arrived, she sank in exhaustion into the cushions of an overstuffed chair. After catching her breath, she glanced approvingly around the room. The walls were crumbling and couches threadbare. Yet, the concrete floor was swept and polished in a deep red. I noticed with embarrassment that the only traces of dirt were in the shapes of my own shoe prints. The tables were dust-free. Decorative cloths were freshly laundered and carefully draped over each couch cushion. I followed Maureen's gaze as she inspected each item in the room in turn, and then she turned to address me.

Connecting the condition of the room to the state of her care, Maureen said: “The children are taking good care of me. People would think it is the elders who are helping and cleaning the place, but it is the children.” Maureen drew attention to the quality of her children’s care. The children were not just taking care; they were taking good care of her. Their care was so good that people would think it was “the elders.” The elders—her mother, brother, and other adult relatives— were not able to take such good care. They, too, had their own care needs and demands on their time. Months later, after Maureen completed more than eight months of TB treatment, she observed that her recovery from TB—her second chance at life, to use Whyte’s phrase—was due, in large part, to her children’s care.

A taken-for-granted assumption has shaped much global health research and policy work on infectious diseases around the world. This assumption is that adults, young or old, give care to the sick—an assumption that dismisses the many children who also give care to the sick. For example, millions of children in sub- Saharan Africa are estimated to provide some level of care as a result of the HIV epidemic. More thoroughly discussed in the context of the HIV epidemic is the crisis of care that HIV has created for the children after their guardians have died.” The availability of treatment for HIV has helped raise life expectancy in heavily HIV-affected areas from what it had been before treatment. As a result, many children in sub-Saharan Africa and beyond now live with adults who benefit tremendously from medications, and yet face recurrent care needs.

Children as Caregivers takes the transition to and continued pursuit of universal treatment for TB and HIV as a critical moment in which to examine care between children and their ill family members. This book is set in a particular place, a poor urban settlement in Zambia, which has one of the highest rates of infectious disease in the country. The stories I tell in the following pages took place at a time (2005 to 2008, with follow-up research in 2014) when the delivery of health services to people with TB and HIV were changing many things about what it meant to receive such diagnoses. Yet residents were, and still are, grappling with the devastation the diseases wrought in their settlement during prior decades. Even with medications, deaths from TB and other HIV-related causes continue.

At its heart, Children as Caregivers is about how intergenerational care happens when infectious disease becomes woven into structures, relationships, and the rhythms of day-to-day life.” The argument I present throughout this book is that a focus on children’s care for and by sick adults offers much-needed insight into global health problems and programs. This is no small argument; billions of dollars each year are invested in global health programming.” My argument has three interrelated themes. First, global processes, policies, and programs do not just affect children. They are also transformed by the intimate and everyday acts that occur between children and their family members. In this respect, a study of care between children and their sick guardians can offer needed perspectives on larger political economic shifts, among these the increasing urbanization and feminization of poverty, brutal cuts to governmental healthcare spending, the uptick in magic-bullet approaches targeting specific diseases and groups, and the significant presence of non-state actors in the provision of services in middleand low-income countries.

Second, a focus on relations between young children and ill persons offers important insight into the forms that care and sociality are taking within settings affected by high rates of infectious disease. Specifically, within recent infectious disease epidemics and outbreaks, target group categories such as orphan and vulnerable child, street child, and child-headed household have become the focus of media attention, humanitarian work, and academic research. By highlighting children’s loss and isolation, such categories suggest that abandonment and isolation are what script children’s lives. A focus on children’s everyday interactions and relationships not only contextualizes their lives, but also honors the dependencies and interdependencies they cultivate and the meanings of such dependencies to their own and other peoples’ lives.

Finally, children shape and are affected by global health, humanitarian, and medical programs, even when such programs are designed to exclude children. The global systems of public health and biomedicine are always contextualized pursuits, as Julie Livingston has shown in her study of cancer treatment in Botswana. Everywhere in the world, Livingston has reminded us, “doctors, patients, nurses, and relatives tailor biomedical knowledge and practices to suit their specific situations” (2012, 6). Part of seeing children as social actors is acknowledging that they, too, tailor global health, humanitarian, and biomedical systems of knowledge and practice to their particular circumstances, and as a means to make life more livable for themselves and other people. Understanding how they do so, I argue, is central to making policies accountable to children’s circumstances and more relevant to their daily lives as well as the lives of their family and community members.

I have chosen to focus on TB, a disease that is overshadowed by HIV in social science research on children in sub-Saharan Africa. A study of TB in sub-Saharan Africa is in one sense a study of HIV, but from a different angle. While many illnesses and other ailments are viewed as signs of HIV’s presence, TB strongly indexes HIV, even in the absence of a positive test result. With the increasing presence of ART, a biomedical TB diagnosis has also become the time when many people receive HIV diagnoses because of policies of direct HIV testing after TB diagnosis.

A study of TB offers much more than a lens onto the HIV epidemic. TB is the target of one of the farthest-reaching standardized global health interventions: the World Health Organization’s (WHO) directly observed treatment, short-course (DOTS) strategy. DOTS has increased the availability of no-cost, outpatient TB treatment around the world and introduced a range of practices for monitoring treatment. Zambia reached 100 percent “DOTS coverage” in 2003 when all TB treatment programs run out of government health centers were based on the DOTS principles of testing, treatment, medication, observation, and reporting. The country’s embrace of DOTS has precipitated a number of public-private partnerships aimed at treating the disease within the DOTS model.

Treatment coverage does not necessarily mean that medicines are accessible, nor should it imply that treatment adherence is an uncomplicated process of supplying drugs to the people who need them. As anthropologist Ian Harper (2006) has observed in Nepal, the DOTS protocol can feed into existing social hierarchies and be counterproductive to patient support. In this respect, attention to age and intergenerational relations offers a needed, and yet missing, perspective on DOTS in particular and standardized disease treatment protocols in general. A focus on children is especially compelling because TB has long been considered an “adults disease,” not only because of its association with HIV in sub- Saharan Africa, but also because of the difficulties in diagnosing TB in children. Children under fifteen years old account for only about 6 percent of the global burden.’ Further distancing children, DOTS-based programs worldwide view caregivers as integral to TB treatment success, but these caregivers are assumed to be adults—an assumption that this book will soon dispel.

CHILDREN AND THE PRACTICE OF BEING CLOSER

Throughout my research, I asked many questions and received many answers, but I have returned, in my thinking, to one particular question and its most common answer. I asked children living with adults who had TB: “How has this illness in your home changed your life?” I posed a similar question to the adults with whom the children lived: “How has TB changed your child’s life?” And child after child, adult after adult, offered me a similar response. The children made statements such as “I always wanted to be close to [my sick relative], now I want to be closer.” The children’s parents, grandparents, and other sick guardians said: “The children always wanted to be close to me, but now they want to be closer.” At first I did not know what to make of these answers. “Being closer” seemed like a vague answer to my equally vague questions. Yet, I found the consistent references to proximity difficult to dismiss because of the infectiousness of TB. They were especially difficult to ignore when I witnessed children’s attempts to stay close to relatives and the amount of effort entailed in sustaining such physical and emotional proximity.

The references people made to children’s proximity hint at one of the central paradoxes of infectious disease: transmissibility creates conditions in which proximity is desired and necessary, and also feared. This is particularly true in settings where institutional and economic resources to treat infectious diseases are scarce. Relationships in such context are everything. Proximity can mark the quality of a relationship and serve as a critical strategy for social and biological survival, especially for people who are the most dependent upon others for their well-being. Let me offer an example to make this more concrete. On the day of Elesia’s TB diagnosis, I sat in the house where she and her children, Abby and Chiko, were temporarily staying. Elesia was on the couch, next to several family members. Family members were discussing who in the family should care for Elesia and where they should send her children. Elesia stifled a series of coughs as she and her family worried about her six- and ten-year-old daughters’ susceptibility to infection. Based on clinical advice about the infectiousness of TB and the rigorous eight-month treatment program, some family members suggested that it was best to separate Elesia from her children.

Over the course of two weeks, Elesia’s sister gathered resources to move Elesia to her house on the other side of the city. Elesia’s brother moved his wife and children to another relatives house to make room for Abby and Chiko in the house where he lived. Meanwhile, Abby and Chiko resisted the separation from their mother. They did so in specific verbal and nonverbal ways. They stayed closer to the house than they had before the family debate. They showed their ability to respond to their mother’s physical needs, and they kept her company, prayed with her, and encouraged her to get better. They reflected on their futures without their mother and on the possibility of their mother’s death while outside of their watchful care. There was no one who had more at stake in their mother’s recovery than they did and this, they believed, made them most suitable to monitor her treatment and care. Elesia also wished to avoid the separation. However, by the time of the move, she was so sick that she had little energy to resist her family members’ efforts.

When children spoke of wanting to be closer to specific persons, they were directing attention toward their relationships and dependencies as well as their strategies for cultivating interdependence. Their attempts to stay close evoked many of the ways in which anthropologists have studied care: as a form of work, as a sentiment and affective state, as an obligation and type of exchange, as an engagement with biomedicine, and as a process structured by social and economic inequality (Buch 2015, 279). Their care-based efforts to sustain relationships did not always work, as in Abby and Chiko’s case, but children tried nonetheless, sometimes going to great extremes and, including, in the case of one young boy, running away from two different households in which he was placed.

Throughout this book, I examine the shared vulnerabilities of children and ill persons. I look most closely at how children attempted to minimize these vulnerabilities through cultivating relationships with specific ill guardians through acts of care. My intention is not to valorize this relationship between children and their sick relatives or downplay age-related inequalities and the scarcities that the children faced. Rather, I see the notion of “wanting to be closer” as a heuristic for examining children’s social action. Since the 1970s, researchers in childhood studies have argued forcefully that we cannot understand children’s lives without paying attention to children’s own perspectives on their lives.” Their argument—an argument for which there is much proof—is that children interpret the world around them and act in ways that reproduce and also change this world. The attempt to remain close to particular ill persons, thus, represents one way in which children experienced and responded to illness and uncertainty, and also drew on the resources they had at hand—including the resources of biomedicine and the globalizing discourses of childhood—to craft particular approaches to care for themselves and other persons, in an attempt to maintain a sense of normality and retain hope for their futures.

How we define children’s care for sick adults matters. Because children’s caregiving was largely ignored by social scientists until rather recently, much research on children as caregivers has focused on the work of care, emphasizing children’s domestic and nursing activities, their cooking, cleaning, nursing, bathing, feeding, and more. This positions children’s care within the much larger body of research on children’s domestic work,"* which has made important contributions to our understandings of children’s roles in economic life and shown that children’s work can be quite significant in particular times and places.” A fundamental premise in childhood studies is that childhood is not a fixed life stage.” The cross-cultural variability in children’s work exemplifies this premise. While there are universals shared by all young children around the world, such as small physical size and early dependence on persons older than them to meet their basic needs, there is much more variation in what children can and are expected to do. Furthermore, larger-scale processes—capitalism, urbanization, globalization, and, as I argue in this book, the changing apparatuses of global health—factor into what children do and also into ideologies about children’s care work as normative and necessary, or out of place.

There is a tendency when examining children’s work to want to identify it as good or bad, harmful or helpful. Children who carry out care work may be, in some cases, more vulnerable than children who do not, but this is not always the case. To draw a line between the acceptable and the harmful with regard to children’s domestic work, international aid organizations and policy makers have relied on particular indicators, including age and amount of time spent engaged in domestic tasks. As anthropologist Rachel Bray (2003) has argued, such measures and, in fact, the international preoccupation with children’s work above other aspects of their lives, can erase the contexts within which children’s work is situated, thus hiding more than they reveal about children’s insecurities and needs. Bray has offered the example of a young girl in South Africa. Responding to a survey on child labor, the girl gave answers that appeared to show that she did not engage in much domestic work at all. Her answers seemed like positive indicators of her well-being. However, when Bray went to the girl’s home, she noticed that there were few chores for the girl to carry out because the household had almost nothing to clean or cook. In such a setting, Bray observed, a child’s involvement in domestic work might actually be a positive gauge of social and economic security. In the example from my own study, Abby’s and Chikos inability to perform care work for their mother did not mitigate their vulnerability. Instead, it threatened their ability to influence the course of their mother’s illness and, in their interpretation of events, their relationship with their mother and sense of security in the present and future. The point is that standardized measures only tell a partial, often decontextualized story, and this story does not always match children’s experiences or their understandings.

Because children’s contributions in households are highly variable, context specific, and do not map neatly onto age-based categories, the extent and nature of children’s domestic work is hard to grasp. As anthropologist Pamela Reynolds (1991) has shown in her study of children’s work in subsistence agriculture in Zimbabwe, one of Zambias neighboring countries, anthropological research techniques are critical to understanding children’s work in all of its complexity. Children’s work, she suggested, can be at the same time obscured, not considered work, and also highly valued and valuable. It can also vary through time with the changing needs and capacities of households and children, making it hard to understand children’s contributions at just one point in time. By following particular children through time, Reynolds was able to identify that children provided adjustable labor for households, filling in where needed and assisting other household members, typically women, when they were overburdened. Though Reynolds does not address illness, her points hold especially true in care for sick persons. The notion of being closer to the sick is far less vague if we think about care needs as constantly changing and if we consider staying close to an ill person as one way in which children remain knowledgeable of and able to do something about such health needs and changes.

Children’s attempts to become even closer to specific guardians during illness were about much more than providing adjustable labor. As the example of Abby and Chiko demonstrates, the notion that children wanted to be closer also hints at another form of work—the work involved in retaining intergenerational and kin relationships. Anthropologist Fiona Ross (2010) has observed that the work of retaining social relationships is unending and frequently becomes most evident during crises, such as illness and death, when relationships threaten to dissolve and when social isolation and rejection become real possibilities. She has written about this work in terms of the temporality that illness and dying impose on ill persons: “Illness, death and talk of illness and dying insert new forms of time into daily routines and everyday life. Caring is pierced by waiting; plans are hollowed by uncertainties; time becomes rigid and drifts simultaneously. It is within and across these qualities of time and not solely those of chronology, seasonality and genealogy that social worlds are crafted and refashioned. The return to life involves . . . the crafting of relationships so that they again take a recognisable and socially sanctioned form” (2010, 198). While Ross was referring most specifically to adults who were ill, her observations are suggestive of the temporality that a guardian’s illness might impose on children as well. As I will show throughout this book, children linked the survival of specific relatives to their own future prospects. Retaining closeness in proximity and affect served as a strategy to shape not only the social and biological survival of sick guardians, but also the social and biological survival of the child. This strategy was context specific and pulled from a range of discourses about proper relationships between children and adults and the types of relationships children need to attain livable futures.

Children’s attention to their proximity to sick guardians highlights the broader inequalities that the children faced in their daily lives, as well as their attempts to do something about such inequalities. Anthropologist Frederick Klaits (2010) has offered insight on this point in his research in Botswana on how people were attempting to sustain relationships in the midst of the HIV epidemic. He suggested that broader economic inequalities in wage labor and access to resources had reinforced people’s tendencies to assess the state of their relationships through the places in which they gave and received care. In Klaits’s words, Batswana “have tended to experience social inequalities as aspects of gendered and generational relationships within domestic or housed spaces... As a result, they commonly take steps to reshape their own and other people’s manner of imagining such relationships” (2010, 18). They did so through activities that occurred in households on a daily basis, such as bathing, nursing, drinking, visiting, and praying. While Klaits's observations were based primarily on women who were members of an Apostolic congregation, and not children, they resonate with the ways in which the children in my study worked to refashion their identities and relationships through activities that occurred between themselves and their sick guardians, in homes and on a daily basis.

Close attention to the place of care reveals both the inequalities children face and need to manage and also the increasingly global facets of childhood. Children received a range of messages about their schooling, rights, vulnerability, and work that they incorporated into their understandings of their situations and the care they gave and received (Skovdal and Ogutu 2009). These globalizing discourses of childhood, as I will argue throughout this book, cannot be measured against local discourses of childhood. They are localized in children’s everyday lives. For example, the children in my study used categories, such as the category of the orphan, to interpret the social isolation that might occur if they were separated from a particular guardian. They understood their care work in particular places and for specific adults as a means of securing an education (and, thus, a future). They also construed activities carried out for the “wrong” adult as something that could inhibit their schooling. Abby, the girl I mentioned earlier who wished to stay with her mother to give her care, had been out of school since her mother became sick, but she saw her chances of returning to school as higher if she remained in her mother’s care, rather than in her uncles. In her mother’s household, she was a caring daughter who responded to the needs of her mother. The potential for reciprocation remained there, despite her mother’s debility. In her uncle’s house, she saw herself as a domestic worker whose actions and attempts to develop a relationship and also receive resources went unreciprocated.

Research on children’s experiences of caregiving frequently embraces dichotomous thinking: assessing children’s care as negative or positive; seeing childhoods as local or global; and positioning children as caregivers or care receivers. This framework, I argue, limits our understandings of children’s care. Children as Caregivers examines children’s care in all of its complexity and “as many things all at the same time” (Orellana 2009, 118).” In the following chapters, I will show children’s care for sick persons as a process of commensurability in which some children and ill adults forged—or attempted to forge—a common vulnerability, one in which boundaries between healthy and sick, adult and child became blurred.” It was this common vulnerability that the children and their ill guardians were referencing when they spoke of wanting and needing to remain close to one another.

GETTING CLOSER

I wrote this book as an anthropologist who has worked for a number of years in the delivery of public health in Zambia, both prior to and during the research and writing of this book. I arrived in Zambia, first, as a Peace Corps volunteer and have since worked on a number of health assessments and interventions, with (or contracted by) the World Food Programme, UNICEF, and the Zambia AIDS Related Tuberculosis Project. Throughout this time, which spanned from 1999, when I joined Peace Corps, to my most recent anthropological fieldwork in 2014, I have seen how children’s perspectives can become sidelined in the delivery of health services, even when services are aimed at children. I have also seen a growing emphasis on children’s participation in public health interventions and community development, and I have struggled with my colleagues who work in the delivery of public health to identify ways to make children’s participation in such processes meaningful.”

INTRODUCTION n

My interest in studying children’s experiences with TB treatment and care grew out of my affiliation with a Lusaka-based nongovernmental organization, the Zambia AIDS Related TB Project, or ZAMBART.* Before beginning my own study of children’s caregiving, I assisted ZAMBART staff with a project they were carrying out with schoolchildren. The project involved asking schoolchildren in heavily TB-affected settings to disseminate information about TB and HIV to their family members, with the hope that children might compel family members to get tested. It was the first TB project to involve children as health promoters in their communities, which made the project uniquely situated to answer a question that had never been asked: Do children have a role to play in TB prevention programming?” The children were already playing roles in their households, well beyond what the project envisioned. However, what exactly the children were doing in their households was hard to ascertain from their responses. We were missing the ethnographic details of children’s daily lives with TB, and this raised further questions for me about what current and past public health efforts were also missing about the household management of the disease. This was a methodological problem that we could not solve within the confines of that project and certainly not within the many other studies of TB in Zambia and elsewhere that excluded children.