Parents’ caregiving approaches: facing a new treatment alternative in severe intractable childhood epilepsy

AbstractParents of children with severe and intractable epilepsy face profound caregiving challenges, dealing with their child’s frequent and intense seizures, accompanying physical, social and psychological problems, and ongoing quest for seizure control through a variety of medications, diet and surgery. With the advent of a new, surgical treatment for epilepsy, vagus nerve stimulation (VNS), these parents have been presented with a renewed possibility of seizure control for their children. While many studies have investigated the effects of VNS on seizure frequency and intensity, none have looked at parents’ experiences in facing this potentially life changing treatment for their child. This multiple-case study addresses this gap by exploring the experiences of nine parents of children receiving VNS. Collected over a 6-month period following parents in the hospital, clinic and in their homes, data from 22 in-depth interviews revealed that parents facing a new treatment alternative for their child experienced uncertainty around treatment efficacy and had a need to exert control over their expectations. Ongoing caregiving approaches adopted by these parents were consistent with existing literature on families living with childhood chronic illness, however, new insights were gained from parents’ sharing of positive life perspectives gained through their experiences. These findings provide guidance for health care professionals working with the parents of children with severe, intractable epilepsy