Speaking teenagers’ language – with the use of technology
Adolescence is a time of upheaval for anyone – but young people with chronic conditions have the added demands of taking medications and attending medical appointments.
When she was 13, Brooke received a double lung transplant because her lungs were failing due to cystic fibrosis. For nearly the whole of Year 8 she was confined to bed and on oxygen, unable to move without a wheelchair and the help of her family.
The transplant gave her back her life but managing the complicated medical regime of a transplant recipient is sometimes hard.
“Mum will tell me I have an appointment but then the day will come and I’ll go to TAFE and I’ll completely forget,” she says.
The Kids Research Institute is researching the issues facing teenagers as they transition from paediatric to adult care. It is a time when they must start to manage their conditions themselves, rather than relying on their parents as they have done their whole lives. The Self-Management Clinic is helping them to cope.
Dr Damien McKay, a Marie Bashir medical research fellow with the Academic Department of Adolescent Medicine, working together with Professor Kate Steinbeck, Foundation Chair of Adolescent Medicine at the University of Sydney, has assessed adolescents’ individual needs with the help of technology they can all relate to – an iPad.
For teenagers like Brooke, the new clinic is adolescents to begin to manage their own illness by identifying potential barriers to self-management and by the purposeful teaching of the core skills they need.
Brooke passed away in 2012 and it is her family's hope that her contribution to the use of this technology will support other young people in the future.