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The University of Southampton
Southampton Education School

Research project: Epilepsy Surgery Pathway: The Lived Experience of Children with Epilepsy, their Parents and Siblings

Currently Active: 

Refractory epilepsy in children has serious implications for cognitive development, educational attainment, psychological well-being and quality of life.

Dates: 2019-22

Funder: Epilepsy Research UK

Surgery can help control seizures in childhood epilepsy if treatment with medication has been unsuccessful. However, for a number of different reasons, families can wait for a long time for decisions regarding surgery, and a proportion of children on this wait list are turned down for surgery. We know very little about how these families feel about waiting for a decision, surgery and their hopes and fears. This project is led by Dr Hanna Kovshoff from the School of Psychology and will hear directly from children, their parents and siblings about their experiences of the epilepsy surgery pathway and we will use different methods to approach this in a way that is sensitive to the children’s needs and the families’ circumstances. We will include 15-20 children with epilepsy, at least one parent/carer per child and one sibling (where appropriate) living in the same household (45-60 people).

Related research groups

Centre for Research in Inclusion
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