Experiences of parents of non-school going children with epilepsy in Lusaka, Zambia

Abstract

Epilepsy is the most common neurological disorder in the world. The disorder is viewed as a public concern on the African continent and is responsible for the enormous amount of suffering affecting approximately 10 million people of all ages; children, adolescents and the aging population. Globally, an estimated 200,000 children are affected with Epilepsy. In Zambia, the exact prevalence is not known. However, very little is known about experiences of parents living and caring for children with epilepsy, and the challenges they face that make them to stop taking their children to school. The general objective of this study was to describe lived experiences of parents of non-school going children with epilepsy in Lusaka. A descriptive phenomenological study design was utilized to describe lived experiences of 10 study parents who were purposive sampled from three study sittings namely: Levy Mwanawasa University Teaching Hospital (LMUTH), University Teaching Hospital (UTH) and Chainama Hills Hospital (CHH) epilepsy clinics. The study settings were purposively sampled as well. Data was collected using face to face interview guide with open- ended questions and thematic analysis was used to analyse the data. Three main themes namely, “Psychosocial difficulties”, “Coping strategies used to manage the child’s condition” and “Sensitisation on epilepsy”, emerged from the data. The three themes were supported by various subthemes. The distress shown by parents were due to the child’s chronic disorder, stigmatisation, from friends relatives and some community members, lack of knowledge on how to skillfully manage a seizure, unable to access resources, information and services for their children and myths, misconceptions and beliefs surrounding epilepsy. The study concluded that, caregivers of non-school going children with epilepsy suffered mental, emotional, physical and environmental stress associated with stigma. Coping strategies such as hopeful, prayer, conventional medicines and social support were used to manage the child’s condition. In addition parents lacked scientific information on the manifestations and management of seizures, they had inadequate knowledge and information with regards to the available structural and support services. Keywords:Epilepsy, Parent, Non-School Going Child, Stigma, Experiences