Parental concerns about their child suffering from epilepsy

Abstract

Epilepsy is a condition characterized by recurrent fits or seizures in which there is sudden disturbance of neurological functioning in association with an abnormal or excessive neuronal discharge (Lissauer and Clayden, 2001). Epilepsy is a chronic disorder which alters neurocognitive functioning, affecting learning, memory, and family adaptation (Leonard and George, 1999). Childhood epilepsy carries multiple negative consequences which involve many areas of the child's life. Parents are extremely distressed when their child is diagnosed with epilepsy, and the typical parental responses include, anger, guilt, shock, frustration, sorrow and depression (Spangenberg and Lalkhen, 2006). The aim of this study is to elicit the major concerns and worries that parents encounter when caring for their child who suffers from epilepsy. This small-scale quantitative study used a likert-scale questionnaire which was designed and used by Chapieski et al (2005). This study is based on a convenient sample of 14 parents who were given a questionnaire at the children's out-patients department at the local general hospital. The likert scale questionnaire was analysed by converting parental concerns into percentages for better comparison between genders, issues, and previous studies. Moreover, the last question was analysed using content analysis. The findings were analyzed under 5 main themes, namely, concerns about the child's lifespan and future way of living; concerns about physical and mental illness; concerns about safety in children with epilepsy; academic performance and social related difficulties; and other remaining concerns. In this study, various concerns which parents encounter were identified. Brain damage, independent and normal living, death during a seizure, safety during a seizure, and denial of jobs in the future were the major concerns expressed by parents. On the other hand, parents had a low level of concern in relation to mental illness, mental retardation, rejection by peers, and sports. A number of recommendations were made regarding awareness about the condition of epilepsy. Further research was suggested to explore more about parental concerns in relation to childhood Epilepsy.