Background
Research evidence has found that little is known about the information and counselling needs of young people with epilepsy. Government reports identified that young people with neurological impairments often receive inadequate services during transition from children to adult services, and do not benefit from improved health outcomes.
Overarching Aim
To identify and explore the communication, information needs and experiences of knowledge exchange of young people age 13 to 19 years, and their parents, with healthcare professionals in clinical settings during transition from children's to adult epilepsy services.
Methods
Phase 1: Mixed-method systematic review and narrative synthesis to develop new theory and propositions.
Phase 2: Comparative embedded case study using multiple evidence sources which explored the experiences of young people and their parents. Two ' transition' cases were selected and 30 young people (aged 13-19 years) and 28 parents participated. 'Framework' thematic analysis was used.
Phase 3: The theoretical framework and propositions from Phase 1 were tested using case study themes (Phase 2) using a pattern matching analytical strategy and replication logic. Theory-based evaluation methods were used to understand how and why different models of service delivery worked ( or not), and for whom.
Findings
Evidence from phase 1 highlighted that current models of facilitating information exchange and self-care around transition were not working well. A new analytical model, theoretical framework and propositions of factors influencing experience of communication, information needs and knowledge exchange was developed.
Seven case study themes were developed in phase 2 and used to test the findings from phase 1. The key findings from phase 3 identified that a joint epilepsy clinic, facilitated by children's and adult services, positively affected some young people by enabling engagement with adult healthcare professionals and retention of epilepsy-related information through continuity of care and on-going communication and information exchange. Psychological care was inadequate and lacked awareness of biological aspects such as memory impairments.
Conclusion and Implications
This study makes a significant contribution to understanding what constitutes good communication and good transition from the perspective of young people with epilepsy and their parents. The systematic review contributes new theory, which underwent further post-hoc development. The comparative embedded case study demonstrated that the type of service configuration, delivery and organisation of care does affect outcomes for young people with epilepsy at transition to adult services.