Abstracts

Rationale: Children with medically refractory epilepsy stand to benefit from surgery and live a life free of seizures. However, a large proportion of potentially eligible children do not receive a timely referral for a surgical evaluation. We aimed to describe experiences during the arduous time before the referral and the parent-reported facilitators that helped to move them forward through this slow time. Methods: Individual semi-structured interviews with 37 parents of children who had previously undergone epilepsy surgery at UCLA (2006-2011) were recorded, transcribed and systematically analyzed by two independent coders using thematic analysis. Clinical data were extracted from medical records. Results: Parents, on average 41.3 years, were mostly Caucasian, English-speaking mothers who were married and employed. Mean age at surgery for children was 8.2 years with a mean time from epilepsy onset to surgery of 5.4 years. Parental decision-making was facilitated when parents eventually received a presurgical referral and navigated to a multidisciplinary team that they trusted to care for their child with refractory epilepsy. Four themes described the experiences that parents used to feel a sense of moving forward. The first theme, processing, involved working through feelings and was mostly done alone. The second theme, navigating the complex unknowns of the healthcare system, was more active and purposeful. Processing co-occurred with navigating in a fluid intersection, the third theme, which was evidenced by deliberate actions. The fourth theme, facilitators, explained helpful ways of processing and navigating that parents utilized to turn vulnerable times following the distress of their child's diagnosis to an experience of productivity. Conclusions: To limit parental distress and remediate the slow and arduous journey to multidisciplinary care at a comprehensive epilepsy center for a surgical evaluation, we suggest multi-prong interventions to modify barriers associated with parents, providers and the health-systems. Based on the facilitators that moved parents of our sample forward, we provide practical suggestions such as increased peer support, developing the role of patient navigators and communication strategies with parents before, during and after referral for evaluation and presurgically. Funding: This project was funded by an Epilepsy Foundation Grant (PI Baca: 213971).