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

Lead investigator: Dr Hanna Kovshoff, University of Southampton

Co-investigators: Dr Anna Moore, Southampton Children’s Hospital, Prof Sarah Parsons, University of Southampton, Dr Andrea Whitney, Southampton Children’s Hospital, Dr Charlotte Mead Southampton Children’s Hospital

Pilot grant: £30,000, 2 years

We want to develop an understanding of child experiences of the epilepsy surgery pathway that takes into account their siblings, parents, peers, and schools. Given that schools are places where children and young people spend the majority of their time, educational experiences and related support are important, but often neglected considerations in the context of medical research.” Dr Hanna Kovshoff, University of Southampton

Background: Refractory epilepsy in children has serious implications for cognitive development, educational attainment, psychological well-being and quality of life. 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. Very little is known about how these families feel about waiting for a decision, surgery, and their hopes and fears.

The Study: Dr Kovshoff and colleagues want to hear directly from children, their parents, and siblings about their experiences of the epilepsy surgery pathway and they will use different methods to approach this in a way that is sensitive to the children’s needs and the families’ circumstances. This pathway can be challenging for families due to the length of time awaiting a decision regarding surgery eligibility (12-24 months), numerous medical investigations, appointments, and the subsequent impact for children and families on school, friendships, work, and family life.  The research will involve 15-20 children with epilepsy, at least one parent/carer per child and where appropriate, one sibling living in the same household (45-60 people).

Significance: Understanding patient and family experiences is vital to ensure that health and education services can provide appropriate support for patients and their families through this process. As increasing numbers of children are considered for epilepsy surgery, this pilot project will provide essential information aimed at improving services and support for children, parents and siblings. Uniquely, this study will also report on the psychosocial outcomes and experiences for children/families when they are not accepted for surgery. The results will inform service provision and be made available in the short-term through leaflets for children and families, and professionals in health and education.

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