Since the 1990s, New Zealand’s policy approach to managing chronic illnesses like asthma has focused on “self-management,” which requires patients and caregivers to take responsibility for managing their illness, usually by taking medicine prescribed by doctors. This approach, designed with adult patients in mind, transfers self-management to caregivers as proxies for child patients, with vague expectations that children will ‘transition’ sometime during adolescence to independent self-management. This approach overlooks the important roles that children hold in their illness management, often from a very young age. A growing body of research demonstrates that children are not just passive recipients of care, but social actors who can powerfully shape their own health. Moreover, children in disadvantaged circumstances may be taking on greater responsibility for illness management as parents are overburdened with work and other caregiving needs. While policy may assume that children cannot, or ought not be responsible for illness management, the reality in many cases is that children are carrying responsibility.
With a focus on asthma as a leading cause of paediatric hospitalisations in Aotearoa, this community-engaged and interdisciplinary project aims to investigate how health professionals, families, and children themselves think about and negotiate children’s participation in, and responsibility for, illness management. To what degree are children’s tasks, responsibilities, and skills recognised and integrated within clinical approaches and family management practices, and with what effects for health outcomes? In partnership with the National Hauora Coalition, answers to these questions will be used to inform service delivery and towards developing culturally-responsive and inclusive models that integrate children as participants in, without holding them responsible for, their own health care.
This project is supported by the Royal Society of New Zealand Te Apārangi and the Auckland Medical Research Fund