Up until your child transitions to adult care you have most likely been the one who has taken responsibility for their care.
Continuing to work together with your child to achieve shared goals can create powerful outcomes. It can be difficult to take a step back and let your child start to manage their own care. That’s why we recommend you start this process much sooner.
Here’s some ideas taken from the Agency of Clinical Innovation (ACI) in conjunction with the Sydney Children’s Hospital Network (SCHN) that your child, depending on their age, may like to consider:
At 12-years
- Can you describe what is CF?
- Can you name your medications and reasons for taking them?
- Do you remember to perform airway clearance?
At 13-14 years
- Can you list your medications, amount and frequency to be taken?
- Can you answer questions independently in clinic?
- Can you perform airway clearance without help?
At 15-16 years
- Can you recognise any of your symptoms and describe them?
- Are you aware of your clinical appointments and tests due?
- Are you aware of your medication supply?
At 17-18 years
- Can you contact your CF team directly to discuss changes in health?
- Can you schedule your own appointments?
- Can you fill and refill your own prescriptions?
In this video parents of young adults share their experiences of raising a child with CF.
“I think the best thing is to realise it will take a little time to adapt and to not be too hard on yourself about that”
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
