Brief Description:
We are currently conducting a study aimed at understanding the real-world experiences of young people living with chronic illness, and the parents or carers who support them. We are inviting: Young people aged 13–17 years living with a chronic illness Parents or carers of children and young people (up to 18 years) with a chronic illness We would be very grateful if your organisation could assist us by sharing information about the study through your newsletter, website, or other communications with your members. About the study: Part 1: A 15-minute online survey about experiences receiving healthcare for chronic illness. Part 2 (optional): A one-hour online interview or focus group to explore these experiences in more depth. Eligible conditions include (but are not limited to) ME/CFS, Type 1 diabetes, cancer, cystic fibrosis, respiratory diseases (e.g. asthma, bronchiectasis), gastrointestinal disorders (e.g. IBD), kidney disease, and long COVID. Participation is voluntary, and all contributions are anonymous. The study has received human research ethics approval (2024/ETH02468). Further details, including a QR code and survey link, are included in the attached flyer. I have also attached the link and passcode here for your convenience: https://rnsapmredcap.nslhd.health.nsw.gov.au/redcap/surveys/ Passcode: P3DRPTFNL If you have any questions or would like additional information, please don’t hesitate to reach out.
Type of research:
Patient experience research
Your time commitment:
Once-off
Consumers re-imbursed?
Volunteers
Participation is voluntary, and all contributions are anonymous.
Who are researchers looking for?
Person with early stage kidney disease
Contact for more info:
Email: nghi.bui@act.gov.au
