Putting children forward for epilepsy surgery: A qualitative study of UK parents' and health professionals' decision-making experiences

Abstract

Decision-making can be supported by incorporating families into discussions regarding epilepsy surgery as a potential treatment option earlier in the process and by providing families with additional information and access to other parents with similar experiences.

What is the patient/family experience of epilepsy surgery services?

“…Parents also describe feeling that they were not given adequate information to make informed decisions about epilepsy surgery. This also reflected the themes that parents felt more empowered to be involved in decision-making processes for their children when they had more information and understanding about their children’s condition and care 1–3 6. One other common theme was that parents felt that peer support during the journey towards epilepsy surgery was a valuable form of support and information 1 2.…”

“…This service is divided into four specialist centres across England that provides specialist Multi Disciplinary Teams (MDT) that assess children for epilepsy surgery suitability and perform the surgery. There is also a move towards considering children for epilepsy surgery sooner than previously considered 2. This sits alongside three other national developments in children’s epilepsy: the development of National Institute for Health and Care Excellence guidelines for the diagnosis and management of epilepsy,9 the national epilepsy 12 service audit7 and best practice tariffs 8…”

“…Parents have described the journey to epilepsy surgery as a long, daunting, stressful, emotional and particularly vulnerable time 1 2 6. Importantly, some of the common themes include parents feeling alone and not fully appreciating the emotional impact that difficult to control epilepsy can have on a family 1.…”

“…Parents also report that finding the right medical professional who understand their child’s condition and makes a timely referral but also advocates for them is a difficult but also important part of addressing some of these difficulties 1 6. It is also clear that parents find that learning the language of epilepsy (common terms and medical jargon used among clinicians) and becoming experts in their own children’s condition was a difficult but necessary process when navigating the surgical pathway 1 2 6. Parents also describe feeling that they were not given adequate information to make informed decisions about epilepsy surgery.…”

“…Primary searches on Healthcare Databases Advances Search, PubMed, MEDLINE, PsychINFO, Embase and the British Nursing Index found 795 results, 15 papers selected for review and 4 included (see online supplementary appendix 1). Of these four papers, three papers1–3 were available, and one was a conference abstract that was not available in full text 4…”