The Cerebral Palsy Lifespan Health and Well-being (CP-Life) Research Centre at RCSI has launched a new set of resources for World Cerebral Palsy Day on 6 October aimed at supporting young people with cerebral palsy (CP) as they transition from children’s to adults’ health services.

These resources are based on research conducted by the Centre which captured the experiences of transition among young people with CP and their families in Ireland.

Cerebral palsy is the most common lifelong physical disability acquired in childhood. About 150 children are diagnosed with cerebral palsy in Ireland each year. Around the age of 18, young people are discharged from children’s health services and are expected to access the adult healthcare system for their ongoing health needs, often with little support.

Transition is the process of preparing young people to take charge of their health in adulthood. Internationally, it has been shown that adequately preparing young people for these changes can improve their health in adulthood. 

Recognising the importance of smooth transition, the CP-Life Research Centre worked with young adults with CP and parents to co-design resources that can support them during the move to the adult healthcare system. The resources include information booklets for young people and parents, checklists outlining the steps to prepare for different stages in transition and a detailed health summary template.

The resources are a result of research conducted by the Centre which examined the experience of transition by surveying and interviewing young people with CP, their parents and health professionals. Many young people felt unprepared and lacked information about the process of transition.

Only 24% receiving information, just a third received enough support to look after their physical health and only 17% received enough support to look after their mental health. Young people, families and health professionals were also uncertain about what professional would take over the young person's healthcare in adulthood, making it difficult to plan.

Dr Jennifer Ryan, Senior Lecturer at the RCSI School of Physiotherapy and Director of the CP-Life Research Centre emphasised the importance of the transition resources, saying: "Transitioning from childhood to adult healthcare can be a challenging and overwhelming time for young people with CP in Ireland and their families. With our research revealing the need for additional information during this phase, these resources were created to support young people with CP in taking charge of their healthcare transition and navigating the adult system effectively. We believe that with the right information and guidance they can achieve better health outcomes in adulthood."

The Cerebral Palsy Lifespan Health and Well-being Research Centre (CP-Life) was established in 2023 as part of a Programme of Excellence launched by the Cerebral Palsy Foundation in Ireland, which aims to establish Ireland as an international leader in cerebral palsy care and research. The programme is being funded with the incredible generosity of a group of private donors, including John and Patrick Collison.

For more information and to access the resources visit the Cerebral Palsy Lifespan Health and Well-being Research Centre’s website. The resources and website were developed with funding from the Central Remedial Clinic and Health Research Board.