Brief Summary

We are conducting a research project with Perth Children’s Hospital and Telethon Kids Institute, called the Childhood Chronic Illness Priority Setting Project. We are surveying young people with chronic conditions (aged 14 to 25 years), parents/caregivers of children and young people with a chronic condition or disability and professionals working with children and young people with chronic conditions or disabilities, to ask what research they think needs to be done. By chronic conditions, we mean any physical illness or disability that has had long-term effects on a child or young person.

We are interested in understanding the most important questions, concerns or priorities that can be addressed through research. Responses will be used to develop research projects to answer the questions that are most important to people like you.

Inclusion criteria

Young people aged 14 to 25 with a chronic medical condition.
Parents and caregivers of young people (up to 25 years) with a chronic medical condition.
Professionals who work with young people (up to 25 years) with a chronic medical condition.
Living in Australia.

Exclusion criteria

People under 14 and over 25. Parents with a child that is over 25 years. Professionals who work with people over 25 years. Those living outside of Australia. Individuals with a mental health condition and no physical condition.

Anticipated start date

Recruitment is underway

Recruitment contacts

Rebecca Sampson: Research Assistant
rebecca.sampson@telethonkids.org.au

Dr Amy Finlay-Jones: Lead Researcher
amy.finlay-jones@telethonkids.org.au

Further details

Survey link:
https://redcap.link/chronicconditions.prioritysetting

Study information:
https://www.telethonkids.org.au/projects/priority-setting-in-youth-with-chronic-conditions/

Region

NSW/ACT/SA/VIC/QLD/WA/TAS/NT

Ethics Approval

Yes

Last updated

12 April 2021