Disclosing Epilepsy to Others: Challenges Children Face

Abstract

Background: Epilepsy is an example of a concealable stigmatised identity. Yet, little is known about the disclosure experiences of families living with epilepsy. This study sought to address this gap in epilepsy literature. This paper will focus on children’s epilepsy disclosure to others. Method: Phase one, of this two-phased mixed method study, consisted of qualitative interviews with 29 children (6-16 years) with epilepsy and 30 parents to investigate epilepsy disclosure experiences for children (self- and proxy-reported). Data were thematically analysed. Findings: Specific challenges to epilepsy disclosure for children were; 1) fear of the reactions of others; 2) feelings of differentness; 3) invisibility of the condition; and 4) difficulty to understand and explain the condition to others. Discussion: This qualitative data provides insight into factors that promote or prevent epilepsy disclosure in children; and subsequently highlight areas for appropriate psychological interventions to improve openness about epilepsy. Such openness could assist in tackling epilepsy-related stigma and consequently enhance life quality and wellbeing for children living with epilepsy.