Priority-setting for children and young people with chronic conditions and disabilities

Who is doing this research?

This project is led by Dr Amy Finlay-Jones and Julie Dart at Telethon Kids Institute. Collaborators on this project include Bec Sampson, Asha Parkinson, Jayden Lucas, Karina Prentice, Amber Bates, Belinda Frank, Dr Keely Bebbington, Jacinta Freeman, Professor Elizabeth Davis, Professor Raghu Lingam and Anne McKenzie.

Amy’s research focuses on centering the voice of children and young people with lived experience in research. The aim of this project was to understand the research questions that are most important to young people with chronic conditions and disabilities and their families.

Why is this research needed?

There are many reasons why it is important for patients, families, and healthcare workers to have their say in research. Chronic illness affects many areas of a young person’s life, and people with lived experience often have different views about which areas should be researched. When young people help to design research, they are more likely to be involved at all other stages of the research. Partnerships between young people, healthcare workers, and researchers leads to better understanding and working together between these groups. It also leads to greater research impact. These impacts include increased use of research in practice and policy, greater healthcare innovations, and more patient-centred care.

What did this research find?

Two hundred participants, including 94 young people with chronic conditions and disabilities, took part in Stage 1 of this research, and 201 people took part in Stage 2. Young people reported almost 100 different types of chronic conditions and disabilities. This study found that there are common experiences across these different conditions, suggesting that it is possible to conduct research that benefits broad groups of young people with chronic conditions and disabilities. The top 10 priorities identified reflect the need to focus on the individual, health systems and social aspects of the chronic conditions and disabilities experience when conducting research in this area. The top-ranked priority was raising awareness, increasing community inclusion and reducing exclusion and isolation of young people with chronic conditions and disabilities, in all aspects of life

Who funded the research?

This research is supported by a Perth Children’s Hospital Foundation Grant and the Starlight Children’s Foundation.

How can I find out more?

Please contact Amy.Finlay-Jones @ telethonkids.org.au or read the Open Access paper.