Skills for Growing Up-Epilepsy: An exploratory mixed methods study into a communication tool to promote autonomy and empowerment of youth with epilepsy

Epilepsy & Behavior : E&B
Sander R HilberinkAnneLoes van Staa

Abstract

The consequences of having epilepsy seriously hamper the development of autonomy for youth with epilepsy (YWE) and limit their social participation. This study was designed to provide insight into the impact of epilepsy on autonomy and empowerment and to evaluate the use of the Skills for Growing Up (SGU-Epilepsy) communication tool in pediatric epileptic care. A mixed methods design was used to examine the impact of epilepsy on autonomy and empowerment and to evaluate the feasibility and use of the SGU-Epilepsy. Six focus groups with YWE and their parents were organized (N = 27), and the benefits of the SGU-Epilepsy were evaluated (N = 72). Youth with epilepsy struggled with social participation. Beliefs of YWE and their parents on managing daily life and taking medication were not always similar. Parents worried about the passive attitude of YWE, but autonomy of YWE seemed to be constrained by parents. The SGU-Epilepsy seemed to be feasible. It facilitated the communication on development and empowerment although it was sometimes confronting for parents. Not all YWE were motivated to use and discuss the tool. In the evaluation, no differences in perceived autonomy and empowerment between YWE who used SGU-Epilepsy and received...Continue Reading

Citations

Nov 22, 2019·Archives of Disease in Childhood·Merel M Nap-van der VlistSanne L Nijhof
May 24, 2020·Journal of Pediatric Rehabilitation Medicine·Sander R HilberinkMarij E Roebroeck
Apr 13, 2021·Seizure : the Journal of the British Epilepsy Association·María José Jiménez-VillegasJaime Carrizosa-Moog

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