“Dropping the B-Bomb”: Families’ experiences of communication and support on the Epilepsy Surgery Pathway

Purpose: Epilepsy surgery is an increasingly common approach to paediatric seizure management for children with refractive epilepsy. The primary aim of epilepsy surgery is to reduce or stop seizures and improve quality of life. However, the surgical pathway is lengthy and challenging, impacting both medical and psychosocial aspects of children and families’ lives. This research explored the experiences of children with epilepsy and their parents on the surgery pathway, up to the decision of surgery eligibility.Methods: Qualitative interviews were conducted with children and parents being considered for brain surgery within the epilepsy surgery pathway at one of the four epilepsy surgery networks in England. Families were at different stages of the epilepsy surgical pathway: pre-surgery, post-surgery, and ineligible for brain surgery. Online interviews were conducted with 19 families including 16 children/young people (aged 7-19 years) and 22 parents. Results: Reflexive thematic analysis was used to gain a rich understanding of the experiences of children and parents. Communication between families and clinical teams was the key factor in shaping positive or negative experiences on the epilepsy surgery pathway. Inadequate communication from healthcare professionals significantly affected the psychosocial wellbeing of families already experiencing considerable psychological distress. Conclusions: Communication between services and families should be regular, accessible, and directly address the high support needs of families. Providing increased communication touchpoints, along with increased resources for clinical neuropsychologists and specialist epilepsy nurses, could help families better manage and thrive throughout the process of consideration for brain surgery.