By Jean Hunleth

Children throughout the world live in families affected by illness and other debilitating conditions, but the care they give to family members is often invisible outside of the family. In her book, Children as Caregivers, anthropologist Jean Hunleth explores how children give and receive care in their families within an infectious disease epidemic.

In Children as Caregivers: The Global Fight against Tuberculosis and HIV in Zambia, I follow the stories of 38 children as they respond to the effects of TB, an infectious disease, in their homes and communities. I base the book on research I carried out in Lusaka, Zambia that spanned nearly 10 years. Yet the ideas for the book started much earlier than the research. They likely took root when I was the age of the children whose stories I tell in the book and my grandfather moved into my childhood home in St. Louis, Missouri, unable to walk or recall his life in the present day. His memories of himself in his younger years were, however, quite vivid. He inhabited these different time periods as I kept him company and fed him his favorite meal of ham and beans with “more horseradish!” than my mother would have condoned. In short, as a 12 year old, I too helped to care for an ailing family member. 

My interests in children as caregivers grew when I joined the Peace Corps as a water sanitation volunteer in Zambia. As a volunteer who took up residence in a village in Zambia’s Eastern Province, I witnessed first-hand the many things that children accomplished for their families, care included. I also saw how international health and humanitarian projects ignored and diminished children’s contributions. Even when addressing child health problems, such projects never seemed to ask children about their experiences. It was this disjunct that I wished to address in my research.

The topic I approach in my book—how children care for adults with TB—is unique, even within the small body of literature on children’s caregiving. TB is often considered an adults’ disease, especially in areas heavily affected by the HIV epidemic. And, even though caregivers are viewed as integral to TB treatment success, caregivers are assumed to be adults—an assumption that I dispel immediately using as evidence children’s own perspectives and experiences. These include 8-year-old Loveness and her 12-year-old brother Bwalya, who took such good care of their sick mother that neighbors and clinical workers assumed their mother had adult caregivers. And 10-year-old Abby, who cared for her mother for weeks prior to her mother’s TB diagnosis. When Abby’s family separated her from her mother at diagnosis based on clinical advice about TB care, Abby’s concerns for her mother’s health increased dramatically—and so did her concerns about her own life chances. These and many other examples based on children’s own experiences and understandings leave us wondering what else global health and humanitarian programs miss when they fail to consider children as social actors.

In addition to my focus on care, my work presents an extended conversation about methods for research with children on very challenging, often stigmatizing topics. Working across anthropology and public health, I combine approaches to research from both fields, namely ethnography and participatory action research. My methods include observations I made while participating in activities of daily life, interviews, structured surveys, performances, archival materials, and drawings. As a complement to Children as Caregivers, I curated an online Art Gallery where I narrate the book through the drawings children made as part of the project.

Children as Caregivers is based on the experiences of a few Zambian children who were growing up in Lusaka in the midst of a TB epidemic. However, I take many lessons from that work that make me consider what we are overlooking when it comes to children’s caregiving in other places, including in the U.S., where I currently live. In the U.S., we are already seeking children’s involvement in all kinds of health projects, including in projects to prevent deaths from opioid overdose. As I write this, we are also dealing with the coronavirus outbreak, which we know is affecting children and families, though we do not know how yet, and it is important that we do not see children only as victims or carriers of the virus. Instead, in these and other cases, it is necessary that we start taking children’s decisions, understandings, and experiences seriously, given the tremendous care challenges of our times, including the outsourcing of significant care work onto the family.

Our ability to better see and hear children, to recognize and come to understand the ways in which they are agentive, will not happen via survey-based and adult-centered research. Instead, it demands ethnographic and multimodal approaches that combine narratives, the arts, and multiple other ways of listening to underscore children’s actions, relationships, dependencies, and interdependencies in context.

My book received a generous grant from Knowledge Unlatched to ensure that an electronic version of the book is and will remain freely available here. Hard copies are also available for purchase from Rutgers University Press and other booksellers. 

Jean Hunleth is an assistant professor of surgery and anthropology in the Division of Public Health Sciences at Washington University School of Medicine in St. Louis, Missouri.