Parental Caregivers' Description of Caring for Children with Intractable Epilepsy

Abstract

The objective of this study was to describe the parental perspective of caring for a child with intractable epilepsy. The purpose of this study was twofold: (1) to describe the caregiver transitions from caring for a healthy child to caring for a child with intractable epilepsy, and (2) to study families that provide caregiving, to identify the challenges, and learn how they address the intricacies and nuances of caring for a child with intractable epilepsy. The specific research questions that guide this study were: (1) What do parents of children with epilepsy find helpful or challenging during transitions from caring for a healthy child to a child with intractable epilepsy? (3) What factors enable parents to transition from caring for a healthy child to a child with intractable epilepsy? The research design used qualitative descriptive design and was based on naturalistic inquiry. This methodology was used to describe parental experiences using their own words and not interpret these experiences. Research participants were recruited from a Level 4 National Association of Epilepsy Center at a Children's Hospital in the Northeast. A purposive sample of twelve parental caregivers participated. Themes that emerged from the interviews included (1) Journey to Diagnosis, Connecting the Dots, (2) Drunken Sailor, Medication Management, (3)Negotiating and Advocacy for Education (4) Provider Challenges, Communication and Parenting and (5) It Takes a Village: Sibling, Family Members and Friends. Nurses play a significant role in education, advocating, and guiding families through the initial diagnosis to dealing with activities of daily living and future planning. This research study serves as a foundation for future intervention studies regarding how best to support parents of children with intractable epilepsy.