The use of portraiture and narrative to explore the impact of vagal nerve stimulation in children with intractable epilepsy
Melanie MacGillivray, Dr. Mark Gilbert, and Dr. Wendy Stewart
Abstract: Epilepsy is common and impacts both the individual and their caregivers. The vagal nerve stimulator (VNS) is a palliative implantable device that can reduce seizure frequency and duration and has a positive effect on mood. Qualitative research allows exploration of the lived experience of children with epilepsy and their family, however limited qualitative research exists in this area. Portraiture has been shown to empower participants and create a sense of community. This study explored the impact of VNS implantation in children with intractable epilepsy. Following Research Ethics Approval, 5 children and their caregivers were recruited. Data consisted of portraits, the artist’s journal and semi structured interviews. All interactions were recorded and transcribed. Narrative data was analyzed using a phenomenological approach. Three main themes were identified: seizure pattern, VNS impact and quality of life. The severity, frequency and type of seizure experienced changed after insertion of the VNS. Quality of life improved with increased hope for the future and independence for the child. Families felt they had more control, and more freedom to engage in activities. Families found the portraiture process and meeting other families helpful. Approximately one third of children with epilepsy require multiple medications with minimal treatment success. The frequency and duration of seizures impacts daily life and causes significant stress. Implantation of the VNS resulted in improved seizure control and quality of life. Portraiture provided an innovative way to deepen understanding of the impact of VNS and humanizes the children and their experience.