Family environment and influence on children with epilepsy

Abstract

Epilepsy is a common, chronic childhood illness in Zambia and has adverse effects not only on children with epilepsy but on parents/guardians and siblings. In order to effectively understand and help children with epilepsy and their families, healthcare providers and advocacy groups must better understand the psychosocial, economic, and behavioural impact of epilepsy on the family unit. A series of focus group discussions involving the parents of children with epilepsy as well as youths with the condition were held in urban Lusaka and rural Mazabuka from 16th June to 9th October 2004. Key issues reported by families included parental fears regarding seizure-related injury with subsequent efforts to "protect" the child from such injuries. This negatively impacted parental work and educational opportunities, educational opportunities for the children were sometimes abbreviated to avoid school-related injury exposures and older children resented limitations placed upon them by their parents. Behavioural problems in the child with epilepsy resulted ill social conflicts for the entire household, both among family members and with the greater community. Sometimes however, where residence was well established and assistance requested, neighbours were a source of support for some families. Conflicts between the parents also occurred frequently as a result of stressors related to the additional care burden. Dual usage of traditional healers and medical clinics was generally reported with healthcare costs notably higher among healers. Despite their limitations, children with epilepsy reported many age-appropriate life ambitions.