title: "It was five years of hell": Parental experiences of navigating and processing the slow and arduous time to pediatric resective epilepsy surgery.
abstract: 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 them move forward through this slow time.
  
  
  
  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.
  
  
  
  Parents, 41.3years of age on average, were mostly Caucasian, English-speaking, mothers, married, and employed. The mean age at surgery for children was 8.2years with a mean time from epilepsy onset to surgery of 5.4years. 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 medically 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 health-care 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; parents utilized these mechanisms to turn vulnerable times following the distress of their child's diagnosis into an experience of productivity.
  
  
  
  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-pronged interventions to modify barriers associated with parents, providers, and health-care 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 to a comprehensive epilepsy center and presurgical evaluation.
authors: School of Nursing, University of California Los Angeles, Los Angeles, CA, United States.
authors: Huibrie C
authors: HC
authors: Pieters
authors: Silver School of Social Work, New York University, New York, NY, United States.
authors: Tomoko
authors: T
authors: Iwaki
authors: Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, NY, United States.
authors: Barbara G
authors: BG
authors: Vickrey
authors: Department of Neurosurgery, University of California Los Angeles, Los Angeles, CA, United States.
authors: Gary W
authors: GW
authors: Mathern
authors: Department of Neurology, University of California Los Angeles, Los Angeles, CA, United States; Department of Neurology, VA Greater Los Angeles Health Care System, Los Angeles, CA, United States. Electronic address: cbower@mednet.ucla.edu.
authors: Christine B
authors: CB
authors: Baca
mesh_terms: D000293:Adolescent; D001921:Brain / Q000601:surgery*; D002648:Child; D002675:Child, Preschool; D003142:Communication; D003657:Decision Making; D004827:Epilepsy / Q000601:surgery*; D005260:Female; D006801:Humans; D008297:Male; D019635:Neurosurgical Procedures; D010290:Parents; D012017:Referral and Consultation
keywords: Decision-making; Epilepsy surgery; Parent; Patient empowerment; Pediatric; Proxy report