Lived experience of epilepsy from the perspective of children in Taiwan

Abstract

The purpose of this study was to explore the lived experiences of school-aged children with epilepsy in Taiwan. Epilepsy affects many people worldwide, especially school-aged children, but few studies have examined children's viewpoints of their experiences with epilepsy. An exploratory, phenomenological interview design was used. Children (ages 7-12 years) with well-controlled epilepsy and no developmental delay were recruited from a hospital in central Taiwan. Data were collected from 15 children using a semi-structured interview guide. Interviews were tape-recorded with permission from parents and children. Verbatim transcripts were analysed using Colazzi's phenomenological method. Two themes emerged from the analysis. The first theme, 'living with epilepsy', had two subthemes: disease-related experiences and school-related issues. The second theme, 'coping with epilepsy', had two subthemes: developing strategies to manage or reduce seizures and seeking support from family members. Taiwanese children with epilepsy had similar lived experiences as their counterparts in Western culture, e.g. unpleasant somatic symptoms, difficulty learning and troubled peer relationships. Taiwanese children also coped similarly with epilepsy by taking medications to control seizures, but they differed from their Western counterparts in trying to self-manage seizures and seeking support from family members. Public health and school nurses can apply our findings to educate school teachers and parents about epilepsy and encourage activities that allow children with and without epilepsy to interact, thus improving peer relationships and reducing stigmatisation. Children with and without epilepsy would also benefit from an age-appropriate education manual that includes causes of epilepsy, treatment, dealing with seizures and psychological and social adaptation.