Publication date: February 2018Source:Epilepsy & Behavior, Volume 79
Author(s): Suzanne L. Crowley, Susan Byrne, Sandra McNulty, Kim Keating, Therese Nestor, Yvonne Owen, Declan O’Rourke, Bryan Lynch, Amre Shahwan, Mary D. King
ObjectiveThe aim and objective of this study was to assess the knowledge and views of parents on transitional and adolescent care in young adults with epilepsy, and to develop a transitional and adolescent program for epilepsy.MethodsData were collected from questionnaires completed by parents during focus groups exploring transitional care and inherent issues for young adults, aged 12–18years, with epilepsy. The questionnaire assessed the current knowledge and views of parents of children with epilepsy on transitional care, and following a presentation on “Transition in Epilepsy” (including themes such as self-advocacy, independent healthcare behavior, sexual health, psychosocial support, educational and vocational planning, health and lifestyle issues) assessed feedback on the proposed model of care in transitional and adolescent care.ResultsData were collected from 34 parents; the majority of parents, 74% (n=25), wish their children to be transitioned and transferred over to the adult epilepsy sites at the age of 18years. Over 82% (n=28) of parents believe the concept of transition should be introduced between the ages of 12–16years.ConclusionThis quality improvement initiative identified the need for transitional care to begin at an early age. This study engaged parents in a process to improve adolescent and transitional care for adolescents with epilepsy. This study also highlights the importance of introducing a detailed preparatory phase for a transitional and adolescent care in epilepsy.