The outcome of a quality improvement project involving parents in the design of an early adolescent transitional clinic in Ireland

Objective: The aim and objective of this study is to assess the knowledge and views of parents on transitional and adolescent care in young adults with epilepsy. Methods: Data was collected from questionnaires completed by parents during focus groups exploring transitional care and inherent issues for young adults with epilepsy. The questionnaire firstly assessed the current knowledge and views of parents of children with epilepsy on transitional care. Following a presentation on ‘Transition in Epilepsy’ (which included themes such as self- advocacy, independent health care behaviour, sexual health, psycho-social support, educational and vocational planning, health and lifestyle issues) feedback was assessed on the proposed model of care in transitional and adolescent care. Results: Data was collected from 34 parents. The majority of parents, 73.54 % (n=25), wish their children to be transitioned and transferred to the adult epilepsy sites at the age of 18 years. Over 82 % (n=28) of parents believe the concept of transition should be introduced between the ages of 12 – 16 years. When introduced to the core concepts of transitional care parents (90%,n=31) wished for self-advocacy themes be introduced to children between 12–14 years with introduction of independent health care behaviour and educational and vocational planning themes seen as desirable by 88.24% (n=30) at 12–16 years. In relation to sexual health the majority of parents, 88% (n=30) recommended that this topic should be introduced from the ages of 12–16 years, and 94 % (n=33) parents reported that life style topics and implications should be discussed with young people at 12–16 years. Conclusion: This quality improvement initiative identified the need for transitional care to be divided under the following four categories: pre- transitional care, transitional care, adolescent care, and the specific needs for young adults with an intellectual disability.