Understanding patient and family views of the epilepsy surgery pathway

• Research type

  Research Study

• Full title

  Epilepsy surgery pathway: The lived experience of children with epilepsy, their parents and siblings.

• IRAS ID

  272240

• Contact name

  Hanna Kovshoff

• Contact email

  hk@soton.ac.uk

• Sponsor organisation

  University of Southampton

• Clinicaltrials.gov Identifier

  53049, University of Southampton ERGO number; 272240, REC Number

• Duration of Study in the UK

  1 years, 11 months, 30 days

• Research summary

  Surgery can help control seizures in childhood epilepsy if treatment with medication has been unsuccessful. However, a proportion of children are turned down for surgery and families can wait a long time for the decision [2]. We know very little about how these families feel about waiting for a decision, surgery and their hopes and fears. 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. We want to hear directly from children, their parents and siblings about their experiences 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). This research will be embedded within the Children’s Epilepsy Service based in Southampton Children’s Hospital. Our results will inform service provision and be made available in the short-term through appropriate information dissemination for children and families within the hospital setting (e.g, leaflets), and professionals in health and education. The findings will also inform the development and application for funding for a larger, longer-term project.

  1. McCoy,B., Benbadis, S.R. (2010). Approach to refractory childhood seizures. Therapy, 7(5), 497-506.
  2. Children’s Epilepsy Surgery Service, Service Specification E09/S/e (Published January 2018). NHS England. https://www.england.nhs.uk/wp-content/uploads/2018/01/service-spec-childrens-epilepsy-surgery-service.pdf
  

• REC name

  West Midlands - Edgbaston Research Ethics Committee

• REC reference

  20/WM/0175

• Date of REC Opinion

  28 Jul 2020

• REC opinion

  Further Information Favourable Opinion