2020: Dr Julie Spray, University of Auckland, has been awarded a Rutherford Foundation Postdoctoral Fellowship for research titled: ‘Passive patients, active participants, or responsible self-managers? Children’s involvement in chronic illness management in Aotearoa New Zealand’
Asthma is a leading cause of hospitalisation of children in Aotearoa. Outside of hospital, however, children and their caregivers must take responsibility for managing this chronic illness. The ‘self-management’ approach to chronic illnesses was designed with adult patients in mind. For child patients, this responsibility is shifted to caregivers, with the vague expectation that children will ‘transition’ during adolescence to independent self-management. While this policy assumes that children either cannot, or ought not, be responsible for illness management, the reality is that in many cases children are carrying this responsibility. In particular, overseas evidence suggests children in disadvantaged circumstances may be taking on more responsibility, as parents are overburdened with other obligations.
Dr Spray’s research will investigate how health professionals, families, and the affected children themselves think about asthma management. This interdisciplinary project will determine how these stakeholders negotiate children’s participation in, and responsibility for, the management of their chronic illness. This work will determine to what degree children’s tasks, responsibilities and skills are recognised and integrated within clinical approaches and family management practices, and how this affects children’s long-term health. In partnership with the National Hauora Coalition, the findings will be used to inform the delivery of health services in Aotearoa. This work will also contribute towards developing culturally-responsive and inclusive models that integrate children as participants in, without holding them responsible for, their own healthcare.