Parent-teacher communication concerning epilepsy: to disclose or not to disclose

ABSTRACT Epilepsy is a neurological condition that sometimes pervades all domains of an affected child's life. At school, three specific threats to the wellbeing of children with epilepsy exist: (1) seizure-related injuries, (2) academic problems, and (3) stigmatization. Unfortunately, educators frequently fail to take into account educationally-relevant epilepsy information when making important decisions. One possible explanation for this is that parents are not sharing such information with teachers. This study surveyed 16 parents of children with epilepsy in order to determine the rate at which they disclosed the epilepsy diagnoses to their children's teachers, as well as the difficulty with which they made the decision to disclose or withhold such information. In addition, the relationships between such disclosure and parent-participants' perceptions of the risks of epilepsy-related injuries, academic struggles, and stigmatization at school were examined. Results indicate that all participants disclosed their children's epilepsy diagnoses to their children's teachers, and most (69%) reported that making this decision was "very easy." There were no statistically significant associations between disclosure and any of three parental perception variables (perceptions of the threats of injury, academic problems, and stigmatization at school). Limitations, implications, and directions for future research are discussed.