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Changing clinics – parents’ experiences

Illustrated outline of a doctor talking to a CF patient.

Transition to adult care is not only hard for the person with CF, it is also particularly hard for parents.

Parents may have spent up to 18 years with a very tight clinical team, who start to feel like friends and family, and breaking this contact is challenging. They reassure you, guide, teach, and care for you and your child, so leaving them is really hard. It can also feel quite scary.

Coinciding with this change are multiple transitions for you and your child. Your child may be looking to move away from home, start a new job, travel, begin to establish new relationships, and generally become more independent. They’ll also take on more responsibility for things like clinics, treatments, adherence, health conversations, and decisions. These changes can take time for both parents and children to adapt to.

In children’s services, parents naturally take responsibility for managing their child’s health and having those hard conversations. This is different to adult services, where the responsibility is usually given to the patient rather than the parents. Adult services will expect patients to attend clinics independently, discuss issues and concerns themselves, and know about their medications, surgery history and medications. This can be distressing for parents who may feel concerned around missed, forgotten, or avoided essential health information.

Here are some insights from parents who have experienced transition:

“I felt like I was leaving my family. But in time, I realised the new clinic team was just as passionate about caring for my child as the paediatric team. They just have a different approach. Learn to embrace the change.”

“We still go to adult clinics, but we don’t go into the room. He still likes our support, so we go along and he knows he’s not doing it all alone.”

“Do a tour of the clinic and hospital beforehand. It’s quite nerve-wracking trying to work out where to go, and who is who. And our hospital is huge.”

“At the start, you go from knowing everyone and everything to no one and nothing. You feel like a nobody, but in time, it becomes the new norm.”

“Start getting your child to answer questions in the children’s clinic so they get used to it.”

“I just wait in the café and help her with scripts and remembering information. She’s so much better at communicating now and has really good control of things.”

Being accountable and responsible is all part of growing up. There will be bumps and resistance, but your child will begin to take on this new role in their own time. Like any transition, it won’t happen overnight, and they will still need your advice and support. On reflection, most parents have found the experience very positive and are extremely proud of how their child takes ownership of their health and decisions.