FOR PARENTS/CAREGIVERS – Transition to Adult Care

Transition starts from diagnosis, it is the process of preparing your young person for being empowered to manage their health, to navigate the health system, and to thrive in the dreams and pursuits they have. Your role as a parent/caregiver is to provide your young person with the opportunities to learn more about their health, to support them in understanding the treatments recommended, and to promote independence in decision-making and health behaviours. You don’t have to do this alone, your healthcare team is there to guide and support you. Talk to a physiotherapist to learn more on strategies on developing these skills around airway clearance strategies and concerns.  Some key areas you could focus on, at a time you feel your child is ready (only you will know that):

• Encourage your young person to talk with the physiotherapist at clinic, rather than you answering the physio’s questions
• Encourage your young person to let you know on the way home from clinic or hospital, what the physio discussed with them, this helps to ensure they heard the same thing as you, and embed the information to implement at home
• Encourage your young person to set up their equipment ready for treatment, and clean and maintain their equipment after use
• Work together with your teen to figure out some simple strategies for building healthy habits at home. It can be tricky so celebrate the small wins when they happen. Set a positive example and get involved – especially with things like exercise. Try to make it fun and something you can enjoy together as a family.
• Your CF team may ask to see your teen alone at times. Often this starts with their physiotherapy consults. This is to support them in asking and answering questions so they can practice before transition to adult services. It is not to exclude you from your child’s health conversations. The team will likely talk to you about the consult immediately after or at the end of clinic. Please talk to your CF team if you or your teen is uncomfortable with this so that everyone can come up with a plan together to build confidence.

Ask your teen how they’re feeling about their physio treatments. It can be hard for them to explain why they’re avoiding it, especially with busy schedules. Acknowledge it’s tough, and remember – physios can help you both find routines that work. Watch this space, we are going to be uploading some “sound bytes”, bite size audio from people with CF, and their parents/caregivers sharing experiences navigating teens and physiotherapy and CF!

Helpful resources:

Cystic Fibrosis Education & Support Resource: CF R.I.S.E.
Transition Support Service : Differences in care (rch.org.au)
Transition Support Service : Take a deep breath for the future (rch.org.au)
Adult Cystic Fibrosis outpatient service | Monash Health