The transition from paediatric care to adult care is a big step in the life of a person with cystic fibrosis and involves many responsibilities; advocating for one’s own needs; and a lot of organization. The experience of transitioning from paediatric to adult care can be overwhelming, multilayered and very complex.
Adolescents with CF must learn to have complete ownership of their care – they need to understand how CF impacts their day-to-day life and how all decisions have a direct impact on their health. They need to learn how to properly manage their care including how and when to take medication and therapies. They should understand infection prevention and control guidelines and learn about the potential risks they may be exposed to on a daily basis. And on top of all this, they also need to deal with the normal stresses every adolescent faces such as school, friendships and relationships – it can understandingly become overwhelming.
As a child with CF grows up, it is important that CF care responsibilities are transferred, gradually, from parents and other caregivers to the child, to ensure ownership of care and to foster the growth of becoming a responsible independent young adult with CF. Transferring care responsibilities should happen slowly over time, before one is ready to transition to adult care, to ease any potential feelings of anxiety.
Cystic Fibrosis Canada understands that additional support is needed to help youth transition to adult care successfully. As such, Cystic Fibrosis Canada has created a CF-specific transition program called CF S.T.E.P. (Self-care. Transition. Empower. Personal growth.) CF S.T.E.P. will try to conquer the complexities of transferring care by slowly implementing transition care conversations and activities with patients starting at the age of 10. CF S.T.E.P. will help identify gaps in knowledge and care responsibilities, so that they can be remediated as soon as possible – before transferring to adult care – which will help those transitioning feel more confident and empowered. Currently the CF S.T.E.P. Transition Program is in a pilot phase being tested with 9 clinics across Canada. Stay tuned to our blog for more updates on CF S.T.E.P.
Many thanks are extended to Cystic Fibrosis Canada’s Transition Working group for their assistance with reviewing the program. Many thanks are also extended to Gilead Sciences Canada, Inc. for the first initial support to build the CF S.T.E.P. Transition Program and to Scotiabank for their generous donation to support the CF S.T.E.P. Transition Program.