Decision-making in paediatric epilepsy surgery
Research type
Research Study
Full title
Decision-making in paediatric epilepsy surgery: A qualitative study of parents’ and health professionals’ experiences.
IRAS ID
173578
Contact name
Gemma Heath
Contact email
Sponsor organisation
Aston University
Duration of Study in the UK
0 years, 8 months, 1 days
Research summary
For children and young people with prolonged, medically intractable epilepsy (where medicine management is largely ineffective), surgical intervention may be beneficial. Despite justification of this treatment in terms of medical and psycho-social burden of the illness, there may be risks attached. Thus, in cases where paediatric epilepsy surgery is an option, health professionals and parents 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 clinicians, parents and patients. How these decisions are arrived at however, is less clear. Research examining parental medical decision-making for and with their children, has identified a number of factors influencing the process, including: parents’ emotional response; balancing the child’s interests with their own; information from, and trust in professionals; uncertainty regarding outcomes; and pressure from people or time. Nevertheless, parental treatment decision-making is likely to vary according to the clinical decision. Moreover, given variability in each child’s decision-making capabilities, parents can struggle to know when and how to include their child. Understanding how parents and professionals make decisions regarding paediatric epilepsy surgery is important for addressing the families’ decision support needs, including how and when to best meet these needs. The aim of this study is to explore how decisions regarding putting children forward for epilepsy surgery are made from the perspectives of parents and health professionals.
REC name
West Midlands - Black Country Research Ethics Committee
REC reference
15/WM/0123
Date of REC Opinion
23 Apr 2015
REC opinion
Further Information Favourable Opinion