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 physios 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 help set up their equipment ready for treatment, and clean and maintain their equipment after use
• Work together with your young person to set up strategies at home to establish healthy habits, this can be difficult, so celebrate the small wins, model the behaviour and join in with your young person, particularly if it is around physical activity/exercise, make it a family fun event

Ask your young person how they are feeling about their physio treatments, it can be hard for them to express reasons why they don’t want to complete treatments. Acknowledge it can be hard to complete treatments, especially as schedules become more demanding in the later years of schooling or starting jobs. Physiotherapists can support you, and your young person, in developing solutions and strategies to fit airway clearance that works for them. Check out some of the sound bites in our helpful resources to hear what other young adults have to say about their experiences in establishing good habits of wellbeing.

Helpful resources:

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