Communication in Families Living With Childhood Epilepsy: Hyper-vigilance and the Restriction of Social Activities

Abstract

Background Stigmatising feelings are common among parents of children with epilepsy. Parents who harbour fear of their child with epilepsy being viewed differently may restrict the child’s social participation. This study aimed to explore issues related to the interpersonal processes and context surrounding parent child dialogue about epilepsy, including consequences of communicating, or not, about epilepsy related issues, such as the restriction of participation in social activities. Method Phase one of this mixed method study involved conducting qualitative interviews with 30 children (6–16 years) with epilepsy and their parents. Data were thematically analysed. Findings Findings revealed a core theme of parents’ restriction of social activities in response to their child’s epilepsy. Sub-themes included hyper-vigilance (a heightened sense of watchfulness) and avoidance of communication about epilepsy to minimise social restrictions. Discussion Parental over-protection can relay to children the limitations that their epilepsy imposes on them. The impact of these limitations can not only support a child’s negative attitude towards epilepsy but also promote child exclusivity and isolation.