How do parents perceive their children’s epileptic seizures? Experiences of the first seizure and changes during the course of the epilepsy

Abstract

ProblemExperiencing a child’s seizure can be challenging for parents. MethodsWe investigated parental experiences of their child’s first seizure and how their perception and management of seizures changed over time. From September 2020 to March 2021, we invited parents who had witnessed at least two of their child’s seizures to take part in a semi-structured interview. Parents whose children experienced solely absence seizures were excluded. ResultsOf the parents, 52/74 (70%) did not recognize their child’s first epileptic seizure and assumed the event to be due to a different cause, for instance teething. Parents overwhelmingly reported fear (48/74; 65%) and surprise (13/74; 18%) as the predominant emotional responses to the first seizure. In response to the most recently observed seizure parents reported feelings related to fear (33/74; 45%) and happiness (16/74; 22%), with regard to the latter, especially “being calm” or “feeling safe”. Asked for thoughts in response to the first seizure, 22/74 (30%) reported concerns about their child’s future, with regard to the most recent seizure, 15/74 (20%) expressed such thoughts. Of the parents, 53/74 (72%) did not know how to respond to the first seizure. Concerning the most recent seizure, 48/74 (65%) said they felt confident in managing the seizure. ConclusionExperiencing the child’s first seizure was very challenging for parents. During the course of the epilepsy, changes were observed in both parental perception of and confidence in managing the seizures. Physicians should consider these changes when counselling parents in order to better target their evolving needs.