Exploring transition from paediatric to adult health services for people with cerebral palsy

Transition from paediatric to adult health services has been defined as ‘a purposeful, planned process that addresses the medical, psychosocial, educational and vocational needs of adolescents’ (National Steering Group for Specialist Children’s Services, 2008). However, studies have characterised current transition practice as poorly planned and lacking co-ordination, particularly for young people with complex difficulties such as those with cerebral palsy (CP), where there is no clear referral pathway to adult services. This raises concerns about the continuity of care as well as the negative impact of this transition experience on young people and their families. Additionally, very little research has investigated transition arrangements in Scotland even though Scotland has its own NHS and health policies. Therefore, there is a need to gain a better understanding of current provision for transition to allow for development of evidence based practice. Objectives: To establish what provisions are currently available for transition in Scotland and what clinicians believe future provisions should involve, with the long term aim of optimizing transition for young people with CP. Methods: Semi-structured interviews were conducted with 13 community paediatricians from 12 different Scottish health boards. Interviews were audio recorded and transcribed verbatim. The transcripts were then analysed thematically using framework analysis. Results: Transition provision varied greatly across health boards. In particular there was variation in the age at which transition planning started and the level of coordination and communication both between health services and education and social services, and between paediatric and adult services. Areas of transition highlighted as requiring improvement varied greatly between health boards, but included the need for a clear transition pathway with greater availability of appropriate adult services, and greater information and support for young people and their families including key workers. Additionally all interviewees characterised this time period as highly stressful for families. Conclusion: This study has revealed that current transition provision in Scotland varies greatly. It is not clear what effect this variation is having on young people and their families. Further work is needed to ensure that all young people experience a well-planned and co-ordinated transition which addresses their health care needs.