Abstract
IntroductionCaring for a child with epilepsy has a significant impact on parental quality of life. Seizure unpredictability and complications, including sudden unexpected death in epilepsy (SUDEP), may cause high parental stress and increased anxiety. Nocturnal supervision with seizure detection devices may lower SUDEP risk and decrease parental burden of seizure monitoring, but little is known about their added value in family homes. MethodsWe conducted semi-structured in-depth interviews with parents of children with refractory epilepsy participating in the PROMISE trial (NCT03909984) to explore the value of seizure detection in the daily care of their child. Children were aged 4–16 years, treated at a tertiary epilepsy center, had at least one nocturnal major motor seizure per week, and used a wearable seizure detection device (NightWatch) for two months at home. Data were analyzed using inductive thematic analysis. ResultsTwenty three parents of nineteen children with refractory epilepsy were interviewed. All parents expressed their fear of missing a large seizure and the possible consequences of not intervening in time. Some parents felt the threat of child loss during every seizure, while others thought about it from time to time. The fear could fluctuate over time, mainly associated with fluctuations of seizure frequency. Most parents described how they developed a protective behavior, driven by this fear. The way parents handled the care of their child and experienced the burden of care influenced their perceptions on the added value of NightWatch. The experienced value of NightWatch depended on the amount of assurance it could offer to reduce their fear and the associated protective behavior as well as their resilience to handle the potential extra burden of care, due to false alarms or technical problems. ConclusionHealthcare professionals and device companies should be aware of parental protective behavior and the high parental burden of care and develop tailored strategies to optimize seizure detection device care.
Highlights
Caring for a child with epilepsy has a significant impact on parental quality of life
The way parents handled the care of their child varied greatly and seemed independent of the course of epilepsy
Parents felt a great responsibility to protect their child and often had difficulties handing over the care due to their child’s specific needs. This responsibility further increased their burden of care, which may complicate the use of NightWatch
Summary
Caring for a child with epilepsy has a significant impact on parental quality of life. Methods: We conducted semi-structured in-depth interviews with parents of children with refractory epilepsy participating in the PROMISE trial (NCT03909984) to explore the value of seizure detection in the daily care of their child. Results: Twenty three parents of nineteen children with refractory epilepsy were interviewed All parents expressed their fear of missing a large seizure and the possible consequences of not intervening in time. The experienced value of NightWatch depended on the amount of assurance it could offer to reduce their fear and the associated protective behavior as well as their resilience to handle the potential extra burden of care, due to false alarms or technical problems. With the unpredictability of seizure occurrence, potential complications including hospitalizations, and uncertain long-term outcome Their children may experience developmental delays caused by seizures or the underlying brain disorder [1]. Parents of children with epilepsy experience compromised quality of life (QoL), influenced mainly by psychological variables (i.e., parental stress response to the child’s epilepsy) rather than disease-related ones [4,5]
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