Toward Informed Choices in Pediatric Seizure Monitoring: Caregiver Experiences, Barriers and Preferences in Alberta, Canada

ABSTRACT Background: Seizure-monitoring devices have the potential to decrease seizure-related injuries and caregiver anxiety, yet their usage among Canadian families remains poorly understood. The pediatric population might face additional challenges. We aimed to understand caregivers’ experiences with seizure-monitoring technologies, identify barriers and explore which characteristics influence device choice. Methods: An online questionnaire was collected anonymously from caregivers of children with epilepsy via local epilepsy clinics, self-support groups and social media posts. The questionnaire assessed seizure characteristics, sudden unexpected death in epilepsy (SUDEP) awareness, prior device experiences and reasons for use and non-use. Results: Of 112 respondents, mainly residing in Alberta, 35.7% ( n = 40) had experience with device-based seizure monitoring, most commonly using medically unapproved camera systems (58.0%) and vital sign monitors (20.0%). The initiative largely originated from the parents themselves (67.7%), and 47.5% reported continuous use. Caregivers with SUDEP knowledge were significantly more likely to have device experience ( p = 0.039). The primary motives were to identify life-threatening situations (55.0%), to alert parents to check on their child (52.5%) and to monitor safety after a seizure (40.0%). The primary barrier was a lack of awareness of monitoring devices (26.4%). Among device-inexperienced caregivers, 80.6% expressed interest in electronic monitoring, but 88.9% reported their physician never suggested it. Conclusion: Although caregivers show strong motivation to use devices, the lack of physician guidance remains a barrier. Structured educational materials on approved and non-approved options are needed to facilitate individualized device selection based on a child’s seizure semiology, age and preferences. Such resources may enhance access to devices, increase awareness and support informed decision-making.