Farhad R Udwadia1,2, Patrick J McDonald1,3, Mary B Connolly4, Viorica Hrincu1, Judy Illes1. 1. Neuroethics Canada, Division of Neurology, Department of Medicine, 8166University of British Columbia, Vancouver, British Columbia, Canada. 2. Faculty of Medicine, 8166University of British Columbia, Vancouver, British Columbia, Canada. 3. Division of Neurosurgery, Department of Surgery, 8166University of British Columbia, Vancouver, British Columbia, Canada. 4. Division of Pediatric Neurology, Department of Pediatrics, 8166University of British Columbia, Vancouver, British Columbia, Canada.
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.
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.
Authors: Katrina A Muñoz; Kristin Kostick; Laura Torgerson; Peter Zuk; Lavina Kalwani; Clarissa Sanchez; Jennifer Blumenthal-Barby; Eric A Storch; Gabriel Lázaro-Muñoz Journal: Brain Stimul Date: 2021-10-23 Impact factor: 8.955
Authors: Patrick J McDonald; Viorica Hrincu; Mary B Connolly; Mark J Harrison; George M Ibrahim; Robert P Naftel; Winston Chiong; Farhad Udwadia; Judy Illes Journal: J Child Neurol Date: 2020-10-28 Impact factor: 1.987
Authors: Viorica Hrincu; Patrick J McDonald; Mary B Connolly; Mark J Harrison; George M Ibrahim; Robert P Naftel; Winston Chiong; Armaghan Alam; Urs Ribary; Judy Illes Journal: J Child Neurol Date: 2021-06-02 Impact factor: 1.987