PATHWAYS - Version 1
Research type
Research Study
Full title
An exploration of the experiences and support needs of families of young children on the epilepsy surgery pathway
IRAS ID
253756
Contact name
Kerry Woolfall
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 8 months, 30 days
Research summary
Approximately one third of children and young people (CYP) with epilepsy experience uncontrolled seizures (Arts et al., 2004). There is increasing evidence to suggest that epilepsy surgery is beneficial for certain CYP with uncontrollable epilepsy and that this should be considered as early as possible due to the negative impact ongoing seizures have upon brain development (Freitag & Tuxhorn, 2005).
The advantages of early surgery have been highlighted for children under 5 years old, and thus services have been developed in response (NHS England, 2013). The Children’s Epilepsy Surgery Services (CESS) aim to improve the quality and uptake of children’s epilepsy surgery for those who would obtain improvement or control of their seizures including those of a young age (NHS England, 2013).
The assessment process to establish suitability for surgery is complex and has many steps. This process is referred to as being ‘on the epilepsy pathway.’ After completing the lengthy assessment process, if appropriate, the children of some families will proceed to surgery. Others, however, will not be suitable and therefore do not receive surgery. Although epilepsy surgery in infancy and early childhood is increasingly recommended (NHS England, 2016), few studies have examined the impact this has on the experiences and support needs of the families of young children being considered for surgery.
This study aims to explore the experiences and support needs (which may include psychological, emotional and practical needs) of families of young children when being considered for epilepsy surgery. The findings will aim to inform future development of family centred support services and contribute to the body of literature around family experiences of young children’s epilepsy surgery.
REC name
North West - Preston Research Ethics Committee
REC reference
19/NW/0040
Date of REC Opinion
5 Mar 2019
REC opinion
Further Information Favourable Opinion