About the Project: ‘Understanding Caregiver Priorities for Research in Children with Chronic Conditions’
This project set out to learn what really matters to parents and caregivers of children living with long-term health conditions in Australia. Caregivers were invited to take part in two rounds of surveys, where they shared their views on the importance of 25 different research topics based on their personal experiences.
Next, caregivers were asked to imagine they were in charge of allocating research funding. They were given hypothetical money to spread across the topics they felt were most important, as well as across different parts of the healthcare journey—from early diagnosis and treatment to end-of-life care and support for families.
Putting Families First in Child Health Research
Why It Matters
Caregivers are experts in their child’s condition, but their voices are often left out of research planning.
Decisions about research and healthcare don’t always match up with what families actually need.
Our Aims
Make sure future research and policy decisions reflect the lived experiences of those who know best—families and caregivers.
Help direct research funding toward areas that will truly support children with chronic conditions and the people who care for them
What We Found
The results showed that the top priorities for caregivers were:
Making it easier to access healthcare
Helping children function better in their daily lives
The stage of care they valued most was prevention and early detection.
These findings can help researchers, policymakers, and funders better focus their efforts on what families really need.
Project Leads & Partners
Partner Organisations:
University of Melboune
Resources & Contact
For resources and project materials including the study protocol contact:
Louise Fisher, Research Program Officer: louise.fisher@unimelb.edu.au