Parents' experience caring for children with drug resistant epilepsy

Rationale for study: Of the more than 65 million people estimated to have epilepsy worldwide, 10.5 million are children; one third of whom have drug resistant epilepsy (DRE). Although caring for a child with epilepsy impacts the lives of the child and family, parents who care for children with DRE have been found to experience more stress, as this severe form of epilepsy negatively affects the child's physical growth and mental development and is often associated with behavior disorders and disturbances. This study examined the lived experiences of parents with children with DRE to gain insight into how they described and gave meaning to their own quality of life relating to their lived experience. Method: A purposeful sample of ten parents of children with DRE participated in the study, equally represented by men and women. The participants' ages ranged from 27 years to 56 years, with a mean age of 45 years. Using distinct interview guides to facilitate conversation, three interviews were conducted over the course of a four-month period. Time for reflection occurred between each interview, with field notes and journal reviews done by the researcher. The transcribed interviews were also reviewed at the beginning of each subsequent interview to ensure accuracy of the stories shared. Results: The semi-structured interviews and narrative analyses portrayed parents' life stories pertaining to what it is like to care for a child with DRE. Narrative life patterns emerged and culminated in five shared areas: what is best for my child, functioning in silos, maintaining balance, living with uncertainty, and finding meaning and purpose. Conclusions: A composite narrative told the story that represented the patterns of parents' experience caring for a child with DRE, which provided a deeper insight into their lived experience. Understanding their experience provided valuable information, such as, the type of support they need and how best to assist them as they care for their children.Ph.D.Includes bibliographical reference