The next few months we’ll be highlighting authors who have published in Culture, Medicine, and Psychiatry.
Julie Spray is a Lecturer in Children’s Studies at the University of Galway. She is an interdisciplinary medical and childhood anthropologist who researches children’s perspectives on health and illness, public health policy and interventions, and health inequalities. She is author of The Children in Child Health: Negotiating Young Lives and Health in New Zealand (Rutgers Series in Childhood Studies, 2020).
Jean Hunleth is an ASsociate Professor in the Division of Public Heath Sciences at the Washingtion University School of medicine in St. Louis. She holds a PhD in cultural anthropology and a Masters of Public Health. Her work focuses broadly on care and caregiving across hospital and home settings in the United States and in Zambia. She is the author of Children as Caregivers: The Global Fight against Tuberculosis and HIV in Zambia (Rutgers Series in Childhood Studies, 2017)
What is your article “Breathing Together: Children Co-constructing Asthma Self-Management in the United States” about?
Paediatric professions tend to be oriented around adult caregivers in biomedical approaches to illness management, leaving children marginalised as passive “shadows” in things like policies, guidelines, and clinical models. But the anthropology of child health suggests children are active participants in their health who derive their own self-care practices. So in this article we shift the lens away from caregivers to center children, asking, what are children’s roles in their asthma management? We asked 24 children to show us how they manage asthma, contrasting their accounts with those of 12 health care providers. We heard from children how they actively co-construct their own “protocols” for dealing with asthma with a range of other actors, through relational processes of care and responsibility, and within the spatial contexts and constraints of everyday childhoods. We suggest children’s activities—which are largely absent from asthma guidelines—are foundational to successful asthma management.
Tell us a little bit about yourself and your research interests.
We are both scholars working at the nexus of childhood and medical anthropology. Jean’s current studies are multiple, including a study of young people’s caregiving for adult cancer patients in the US, a study on bedside caregiving in a pediatric hospital in Zambia, a project to implement HPV vaccination into adolescent health services in Zambia, and a photographic examination of children’s experiences with health and care in the rural Midwest (US). These studies may seem quite different, but they are united by an interest in learning from young people to better understand care (in its varied definitions).
Julie has continued her long-term focus on paediatric asthma through a New Zealand based project about how health professionals, adult caregivers and children are differently thinking about children’s roles and responsibilities in asthma management. Additionally, her comic-making project The Pandemic Generation has investigated children’s representation inclusion and participation in Covid-19 public health promotion in New Zealand and, in the near future, Ireland.
What drew you to this project?
We were the two childhood medical anthropologists on an NIH-funded interdisciplinary team investigating caregiving for paediatric asthma. This article is the product of our relentless harping to the rest of the team that children matter too. The team very graciously trusted us to run a subproject working with the children of caregivers who had been previously interviewed for the main grant.
What was one of the most interesting findings?
Neither of us were surprised by our findings, because we knew from our respective previous child-centered projects children have agency and engage in their own self-care practices, and that those practices will be overlooked and underestimated by adults. But one thing we hadn’t expected was the role of drinking water in children’s protocols—so many of the children described drinking water as a firstline response to asthma symptoms. Adult caregivers had described a huge range of their own strategies but almost adult had mentioned water. We think this speaks to how much more constrained children are in their own health management—some of them couldn’t easily access inhalers at school, for example. Water is the one “health” product children have ready access to.
What are you reading, listening to, and/or watching right now?
Julie is reading Danya Gablau’s new book “Food Allergy Advocacy: Parenting and the Politics of Care” and thinking there are many parallels with asthma, and also food allergy would be another important area to investigate children’s own practices.
I (Jean) am reading The Scent Keeper by Erica Bauermeister. I find myself drawn to fiction narrated by child characters, and also fiction that offers new ways of thinking and writing about experience. The focus on scent is compelling to me as an anthropologist because my methods are so multisensorial. I think with fragrances often but haven’t quite figured out how to write them into my work.
If there was one takeaway or action point you hope people will get from your work, what would it be?
To critically consider how adult-centric their thinking is! The naturalisation of age-based bias is one of the few forms of prejudice that still seems unchecked. When we assume children are passive and caregivers are the only people that matter, that children cannot and ought not be responsible for their own health care, or that children’s activities are just “training” for future adulthood and inconsequential to the health of the present child, we do children a huge injustice and leave them without important supports for the roles they must and do play in their own health.
Thank you for your time!