This qualitative study investigated factors that guide caregiver decision making and ethical trade-offs for advanced neurotechnologies used to treat children with drug-resistant epilepsy. Caregivers with affected children were recruited to semi-structured focus groups or interviews at one of 4 major epilepsy centers in Eastern and Western Canada and the USA (n = 22). Discussions were transcribed and qualitative analytic methods applied to examine values and priorities (eg, risks, benefits, adherence, invasiveness, reversibility) of caregivers pertaining to novel technologies to treat drug-resistant epilepsy. Discussions revealed 3 major thematic branches for decision making: (1) features of the intervention—risks and benefits, with an emphasis on an aversion to perceived invasiveness; (2) decision drivers—trust in the clinical team, treatment costs; and (3) quality of available information about neurotechnological options. Overall, caregivers’ definition of treatment success is more expansive than seizure freedom. The full involvement of their values and priorities must be considered in the decision-making process.

这项定性研究调查了用于治疗耐药性癫痫儿童的先进神经技术指导护理人员决策和道德权衡的因素。在加拿大东部和西部以及美国的 4 个主要癫痫中心之一（n = 22）招募有受影响儿童的看护人参加半结构化焦点小组或访谈。讨论被转录和定性分析方法用于检查与治疗耐药性癫痫的新技术有关的护理人员的价值和优先事项（例如，风险、益处、依从性、侵入性、可逆性）。讨论揭示了决策制定的 3 个主要主题分支：（1）干预的特征——风险和收益，重点是对感知到的侵入性的厌恶；(2) 决策驱动——对临床团队的信任，治疗费用；(3) 有关神经技术选项的可用信息的质量。总体而言，护理人员对治疗成功的定义比无癫痫发作更广泛。在决策过程中必须考虑他们的价值观和优先事项的充分参与。