Youth Weigh In: Views on Advanced Neurotechnology for Drug-Resistant Epilepsy

Abstract

Background:

Epilepsy affects over 500,000 children in North America of whom 30% have drug-resistant epilepsy. Advancements with neurotechnologies show promising benefits, but the perceptions of these procedures by youth is unknown.

Methods:

We conducted semistructured interviews with 10 youth in British Columbia, Canada who underwent procedures for drug-resistant epilepsy involving different forms of neurotechnology (subdural grids, vagus nerve stimulation, responsive neurostimulation). Interviews were analyzed using the constant comparative qualitative method.

Results:

Four major thematic categories emerged from the interviews. Treatment values, impact of the disorder, personal context, and impact of neurotechnology.

Conclusions:

Besides the predictable goal of seizure reduction, a desire for autonomy and the importance of trust in the medical team emerged as dominant values within the 4 thematic categories that were explicit to the use of new neurotechnologies for the management of drug-resistant epilepsy.