The challenges parents of children with epilepsy face when talking about epilepsy within the home

The aim of this study was to explore the challenges that parents of children with epilepsy face when talking with their children about epilepsy and epilepsy-related issues.

The researchers interviewed 34 parents of children with epilepsy, the children ranged in age from 6 to 16, about how they communicated with their children on the subject of epilepsy.

The researchers categorised the interviews in terms of theme, from these five main themes were identified.

Parents found a number of issues difficult when speaking to their child about epilepsy; they found it hard to create a sense of normality, the often hidden nature of epilepsy, and their own fears of frightening or misinforming their child. They also experienced difficulty in speaking about certain epilepsy-related issues. 

These communication difficulties affected the parents' ability to communicate with their children about epilepsy in their homes. To improve communications greater parental understanding of epilepsy may encourage them to discuss epilepsy more openly with their children.

The research concluded that healthcare professionals should be mindful of the communication challenges faced by parents of children with epilepsy when speaking about epilepsy and to support families to communicate more effectively.

This study was funded by the Health Research Board (HRB) through the Joint Funding Scheme operated by the HRB and the Medical Research Charities Group, and Epilepsy Ireland. 

Details of this study are also available on the Epilepsy Ireland website.

Source: Epilepsy & Behaviour, Volume 57, Part A, April 2016, Pages 9–15