Decision-making in paediatric epilepsy surgery
Research type
Research Study
Full title
Decision-making in paediatric epilepsy surgery: A qualitative study of young people’s experiences.
IRAS ID
233920
Contact name
Gemma Heath
Contact email
Sponsor organisation
Aston University
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
For children and young people with prolonged, medically intractable epilepsy (where management using medicines is largely ineffective), surgical intervention can lead to improvements in quality of life by reducing the number and severity of seizures. Despite justification of this treatment in terms of the medical and psycho-social burden of the illness, there may also be risks attached. Thus, in cases where paediatric epilepsy surgery is an option, clinicians and families are often faced with difficult treatment decisions. The shared-decision making model used in paediatric healthcare settings, proposes that decisions regarding treatment (including surgical intervention) are shared between a multi-disciplinary team of health professionals, parents and patients (where appropriate). How these decisions are arrived at however, is less clear. While previous research has explored decision-making in paediatric epilepsy surgery from the perspective of parents and health professionals, little work has specifically explored how young people are involved in the process of deciding to undergo surgical treatment for their epilepsy. Evidence is therefore limited on factors that are important to young people when considering surgical intervention, what matters to them in terms of their health outcomes following treatment (beyond morbidity and mortality) and what their information and support needs are when making this important decision. The aim of this study is to explore how young people are involved in making decisions regarding paediatric epilepsy surgery.
REC name
West Midlands - Edgbaston Research Ethics Committee
REC reference
18/WM/0042
Date of REC Opinion
25 Mar 2018
REC opinion
Further Information Favourable Opinion