Objective: The 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.
Methods: Data 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.
Results: Data 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.
Conclusion: This 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.
Keywords: Adolescence; Epilepsy; Parental engagement; Transitional and adolescent care.
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