Parent-child dialogue about epilepsy and psychosocial wellbeing: a mixed method study

Abstract

Background: Epilepsy is one of the most common neurological conditions occurring in childhood. However, the consequences of epilepsy extend beyond seizures to include psychosocial effects interfering with the child’s social experiences, quality of life (QOL), and family relations. One particular challenge children living with epilepsy (CWE) and their parents face is the presence, or fear, of societal epilepsy-related stigma, which can sometimes limit family discussions about epilepsy. However, little is known about epilepsy-related dialogue between CWE and their parents. Aims: This study aims to explore CWE’s and parents’ experiences of talking about epilepsy together, and the relationship between epilepsy-related communication and a number of demographic, clinical and psychosocial variables. Methods: A systematic review of available evidence relating to epilepsy-related communication in families living with childhood epilepsy was conducted. Following this, a sequential exploratory mixed-method design was employed involving two phases; 1) qualitative interviews with 29 CWE and 33 parents, and 2) cross sectional surveys completed by 47 CWE and 72 parents. Results: Integrative findings revealed that CWE and their parents experience many challenges and facilitators to dialoguing about epilepsy, including; condition visibility, epilepsy-related knowledge, fear of causing worry, quest for normalcy, CWE desire for autonomy and parent’s desire to protect, and epilepsy-related attitudes. Closed epilepsy-related communication was associated with poorer psychosocial outcomes for CWE and their parents, including; greater perceived-stigma, poorer illness-attitudes, negative self-perceptions, less social support, and poorer QOL. Conversely, open epilepsy-related communication was associated with positive psychosocial wellbeing. Conclusions: This study contributes significantly to the under-researched area of parent-child epilepsy-related communication. The findings provide valuable information surrounding the contextual factors influencing CWE and parents epilepsy-related dialogue, and the impact of this communication on CWE’s and parents’ wellbeing. Family-based communication interventions should endeavour to increase epilepsy-related knowledge and CWE autonomy in order to enhance effective parent-child dialogue about epilepsy