Welcome to The Kaleidoscope Project!
Research seeks to improve the lives of children with chronic disease and their families. However, research priorities are usually set by researchers, with little involvement of patients and their families.
The Kaleidoscope Project will bring together children with chronic disease, their families, clinicians and policy makers to identify research priorities. This will help to ensure that resources are directed towards research that is important and relevant to children living with a chronic condition and their caregivers.
- Who can be involved? Children aged 0 to 18 years with chronic conditions, parents/caregivers, clinicians, policy makers and other stakeholder with an interest in paediatric research in chronic conditions
- What type of chronic conditions? All types of chronic (or long-term) health conditions will be included.
- What kind of research priorities can be suggested? Research priorities can include topics or questions that are relevant across most or all chronic conditions. For example: help with taking medications, improving self-esteem, doing well at school, dealing with depression or anxiety, coping with pain, improving survival etc
- Where is this project being conducted? The project will involve people from all around Australia.
How will it work?
The Kaleidoscope Project will be based on the James Lind Alliance approach for research priority setting partnerships. Priority setting partnerships enable patients, caregivers, and clinicians to work together to identify and prioritise research questions. The project will involve:
- Focus groups with children aged 7 to 18 years with a chronic condition and parents/caregivers of children (aged 0 to 18 years) with a chronic condition to identify their research priorities and the reasons for their choices.
- A National Survey with children, parents/caregivers, clinicians, policy makers and researchers to collect and prioritise research questions in childhood chronic conditions.
- A Consensus Workshop with patients, parents/caregivers, clinicians, policy makers and researchers to discuss and prioritise research questions in paediatric chronic diseases and ultimately to achieve consensus (agreement) on the top 10 research priorities.