Attitudes and practices of families and health care personnel toward children with epilepsy in Kilifi, Kenya

Abstract

Purpose Epilepsy is common in underresourced countries, where most people with epilepsy do not take antiepileptic drugs (AEDs). This underutilization, referred to as the treatment gap, was investigated in Kilifi, Kenya, by exploring the sociocultural context in which children with epilepsy and their families live. This study focused particularly on what effect attitudes and practices might have on service utilization, particularly the use of AEDs. Methods Attitudes and practices toward children with epilepsy were examined using qualitative data collection methods, namely, interviews, focus group discussions, group activities, and observations. These were carried out with children diagnosed as having active epilepsy, their parents, their grandparents, and health care personnel. Results The responses illustrate both positive and negative attitudes, underpinning a wide variety of practices toward children with epilepsy. They also indicate the use of several types of services that vary between the traditional, medical, educational, and religious. The choice of these services was affected by different socioeconomic factors, the complex interrelationship of which offers some explanation for the underutilization of AEDs. Conclusions The treatment gap may be explained by a “health versus sickness” model, accounting for families’ health-seeking behavior in relation to their perception of cause and treatment. In this model, occasional convulsions associated with fever in younger children are placed in the “health sphere,” making recommendations of regular and continued medication illogical for what is perceived to be a healthy child. When seizures persist beyond a certain age, the child is placed in the “sickness sphere,” meaning that the child is incurable and treatment attempts are futile. Better levels of understanding and information sharing among children with epilepsy, their families, and health care personnel are required to improve use of medical services. Possible interventions include community-based services and health education programs for the community and service providers.