The Invisibility of Epilepsy: Challenges Posed for Family Communication About and Disclosure of Childhood Epilepsy

Abstract

Background Epilepsy is unique as it is only visible when symptoms manifest. During periods of seizure freedom, there may be no evidence that the person has epilepsy. This poster aims to relay the impact that the invisibility of epilepsy may have on family communication and disclosure strategies adopted by families living with epilepsy. Methods Data in this presentation emerged from the qualitative phases of two mixed method studies exploring disclosure practices and family communication surrounding epilepsy. Sixty interviews were conducted with children with epilepsy and their parents. Data were thematically analysed. Findings Analysis of the data revealed that the invisible nature of epilepsy: a) poses significant challenges for parent-child communication about the condition; and b) can result in families adopting concealment disclosure strategies. Discussion Silence around epilepsy contributes to epilepsy related-stigma. Acknowledging the impact that the invisibility of epilepsy can have on family communication and disclosure practices can promote more openness about epilepsy within a family context and in the public domain; thereby enhancing the wellbeing of individuals with epilepsy.