Author(s): Winterbottom J.; Lynch J.; Vinten J.
Source: Epilepsia; Dec 2017; vol. 58
Publication Date: Dec 2017
Publication Type(s): Conference Abstract
Available at Epilepsia – from Wiley Online Library Full Collection
Abstract:Purpose: Epilepsy affects around one in 240 children in the United Kingdom; the majority will transition to adult care. When approaching adulthood, young people with epilepsy (YPWE) experience challenges to successful transition, including knowledge deficits and negative attitudes towards their condition. Our aim was to explore the experience of transition for YPWE to produce accessible resources, increase knowledge and engagement in adult epilepsy services. Method: A longitudinal mixed-methods study followed 22 YPWE (16-21 years old) and 18 parents/carers through transition to the Walton Centre, Liverpool UK. Each participant attended up to four focus groups; with semi-structured interviews gathering longitudinal data. Quantitative self-reported questionnaires were completed at recruitment and at study completion to assess knowledge, mood, seizure impact, and quality of life. Descriptive statistics and thematic analysis generated key themes to explore the contextual data from interviews and focus groups. Results: Young people told us they lacked social support during transition, and struggled to locate and access appropriate information at the required times when needed, such as prior to first appointment in adult services or when they experienced changes in their condition. Of interest, participants revealed misconceptions about pregnancy and topics including inheritance, antiepileptic drug risk, and actions to take if experiencing accidental pregnancy. They valued meeting other young people, and felt it should form part of their routine epilepsy care. The opportunity to develop and improve their social and coping skills was achieved through development of an animation for future YPWE first attending adult epilepsy services. Conclusion: This project builds on previous studies identifying barriers to transition. Working with YPWE we identified key themes about transitional worries, utilized to develop accessible resources: leaflets, animation and group interventions. These resources focus on psycho-social education and coping strategies in order to increase knowledge and resilience and facilitate engagement with adult epilepsy services.