Community perceptions of developmental and behavioral problems experienced by children living with epilepsy on the Kenyan coast: A qualitative study

Childhood epilepsy is common in Africa. However, there are little data on the developmental and behavioral problems experienced by children living with epilepsy, especially qualitative data that capture community perceptions of the challenges faced by these children. Identifying these perceptions using qualitative approaches is important not only to help design appropriate interventions but also to help adapt behavioral tools that are culturally appropriate. We documented the description of these problems as perceived by parents and teachers of children with or without epilepsy. The study involved 70 participants. Data were collected using in-depth interviews and focus group discussions and were analyzed using NVIVO to identify major themes. Our analysis identified four major areas that are perceived to be adversely affected among children with epilepsy. These included internalizing and externalizing problems such as aggression, temper tantrums, and excessive crying. Additionally, developmental delay, especially cognitive deficits and academic underachievement, was also identified as a major problematic area. There is a need to supplement these findings with quantitative estimates and to develop psychosocial and educational interventions to rehabilitate children with epilepsy who have these difficulties.