Family Well-Being and Children with Epilepsy in Kilifi, Kenya: "When a Child Convulses his Family is Affected"

Abstract

Background: The study was conducted with families of children with and without active epilepsy on the coast of Kenya, in Kilifi District. We established a context specific, ecocultural concept of "family well-being," and employed this concept to investigate how the presence of a child with persistent epilepsy impacts overall family functioning. Methods: Dimensions of family well-being and the pathways through which epilepsy affects these dimensions were identified through quantitative and qualitative analysis of data from person-centered interviews and participant observation. Results: Families in Kilifi constructed ideas of family well-being in terms of seven distinct dimensions: pleasure/pain experiences, social relationships, goals and values, daily routines, ties to land, resources, and physical health. Analysis revealed several aspects of well-being were compromised by caring for children with epilepsy, particularly family goals and values, daily routines, and social relationships. Examination of frequency counts of negative experiences in two subgroups of families of children with epilepsy (high and low frequency of symptoms) revealed that disease severity was associated with lower well-being and that some dimensions were more negatively affected than others. Conclusions: Findings indicate that specific aspects of family well-being are affected by childhood epilepsy and suggest the need for improved seizure management and further research exploring associations of chronic childhood illness and family well-being. A better understanding of the relationship between family well-being and chronic pediatric illness can be used to develop more efficient family assessments and design more effective interventions targeted to specific family needs.