Skills for Growing Up - Epilepsy tool

Developing, testing, implementing and evaluating

The transition from youth to adulthood entails many changes, both physically, psychologically and socially. Among young people with epilepsy, growing up is often more difficult than those without. For this critical period the Skills for Growing Up – Epilepsy tool will be developed. This planning instrument encourages normal development towards independence and autonomy.

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With the Skills for Growing Up – Epilepsy tool a planning instrument will be presented, stimulating social participation and independence, transition preparation and a healthy development in young people with epilepsy. Rotterdam University of Applied Sciences (Research Centre Innovations in Care) and the Academic Centre for Epileptology (Kempenhaeghe) expect that the use of the tool will contribute to more independence of youth with epilepsy and an improved participation in society.

In this project, the research team closely collaborates with professional epilepsy experts, but also with youth and parents of the Epilepsievereniging (Epilepsy Patient Organisation). Together, they will work towards the Skills for Growing Up - Epilepsy tool suitable for all young people with epilepsy. For this reason two versions will be developed: one, for youth without an intellectual disability, and a version for youth with an intellectual disability. For the latter group, reaching independence and autonomy has different end points.

The project consists of three phases. In the first phase, the adaptation of the items of the existing Skills for Growing Up lists to youth with epilepsy is necessary. In the second phase, the usability of the new method will be tested in the practice of epilepsy care. Ultimately, both versions of the new instrument will be disseminated widely in Dutch epilepsy care.

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