The Ignition study: Sharing stories to improve the experience of transition for young people with cerebral palsy

Cerebral palsy (CP) is a common cause of disability among children. All people with CP have a physical impairment. About 30% use a wheelchair and some children also have difficulties hearing, seeing and speaking. Children with CP are transferred from children’s health services to adult services at age 18. This can be challenging as young people balance their healthcare needs with becoming more independent. Transition is a process where children’s health services prepare young people to transfer to an adult healthcare environment.

In the Ignition study, we asked young people with CP, parents and health professionals about their experience of transition. We conducted two national surveys with 75 young people and 108 health professionals and interviews with 13 young people, 14 parents and 27 health professionals. Young people and parents told us they lacked information about moving to adult services and support to manage their health. Many young people did not know others with CP or see people like themselves in the media. Young people and parents thought that getting information from people with CP and parents who had been through the process would make them less worried about moving to adult healthcare.

We used the data from the Ignition study to identify resources to improve transition in collaboration with a group of young people with CP and a group of parents. The groups thought that digital stories would be an engaging way of providing information to young people and parents. In this project we will work with a communications agency to create engaging and accessible digital stories about young people’s and parents’ experience of transition. The purpose of the stories will be to share information about transition, reduce fear about the future, show role models, and educate health professionals and the public about the experiences of people with CP.

Award Date

12 September 2022

Award Value

€20,431.00

Principal Investigator

Dr Jennifer Ryan

Host Institution

Royal College of Surgeons in Ireland

Scheme

Knowledge Translation Awards