For these children, the process of transitioning from paediatric to adult care is a crucial part of the long-term management of their condition. It is vital that children, their parents or carers, and their rheumatology team work together to ensure that this process is successful, and that children continue to receive the care they need as they grow into adulthood.
In Scotland, children with JIA normally can expect to remain in the care of a paediatric rheumatology team until they leave school (at 16 or 18 years of age), at which point they will transition to adult rheumatology services. Each hospital will have its own arrangements for transition, and your rheumatology team (both paediatric and adult) will work with you and your family to help you navigate through the process.
As you grow into adolescence and adulthood, you can expect to become less dependent upon your parents. While you are in paediatric care, your parents or carers take primary responsibility for your treatment and represent your interests to medical staff. As an adult, however, your doctors and nurses will expect more of you. You will be expected:
At its heart, transitioning to adult care is a process in which you begin to learn how to live well with arthritis as an adult, taking increasing responsibility for the management of your condition.
You can help your child take responsibility for their own care by encouraging them and supporting them as they take a more active role in managing their condition. This will involve learning to trust them as they begin to meet with their rheumatology team alone; and it will mean learning to respect the decisions they make about their care. This is not always easy: many parents will have dedicated time and attention to their child’s care over many years, and it can be difficult to step back and let go. Talking through your feelings is an important part of the process–for you and for your child.
Just as there is no single way to navigate the challenges of growing up, there is no ‘right way’ to transition from paediatric to adult care. But it is worth noting that researchers who have studied the strategies for successfully managing the transition often stress the advantages of preparing well in advance. Parents and children should begin early on to learn about how the process works in their local area, and they should talk regularly with their rheumatology team about what they can do to help ensure the process goes smoothly.