Lived experiences of young people with active convulsive epilepsy in Vihiga County, Kenya

Abstract

Epilepsy is one of the chronic illnesses whose management is subjugated in policy documents although it affects over 1% of the population in Kenya. This has individualized its management causing those living with the illness to be discriminated, isolated and stigmatized. Using Interpretative phenomenological approach, this study investigated the lived experiences of young people with epilepsy and the implications on its management. Specifically, the study aimed to achieve the following objectives: to investigate the community‘s perceptions namely knowledge, attitudes and practices towards epilepsy and determined how these perceptions influenced the lived experiences and illness management of young people living with epilepsy. The study adopted mixed research method. Survey research design was adopted in collecting quantitative data on community perception towards epilepsy. These data were collected from 150 respondents who were selected through multistage sampling technique with the aid of a questionnaires which had open and close- ended questions. Case study design was adopted in collecting qualitative data on lived experiences and illness management. These qualitative data were collected using in-depth interviews from 15 young people living with epilepsy who were selected through snowball sampling technique. In- depth interviews were guided by an interview guide. The quantitative data which was collected with aid of questionnaires was code and descriptively analyzed with aid of SPSS computer program. The analyzed data was presented in form of frequency and percentage tables. Qualitative data from in-depth interviews was tape recorded, transcribed ad verbatim and thematically analyzed. The study found community perceptions namely knowledge, attitudes and practices about epilepsy drew both from biomedical and ethonomedical health systems which individualized the illness. This made those living with epilepsy to be discriminate, stigmatized and isolated. Thus, those living with the illness perceived it as biographical disruption due to the limitations it imposes on their life projects. Consequently, those living with epilepsy managed it through concealment as a way to socially fit into their significant social network. In conclusion, this study argues that community knowledge, attitudes and practices have influence on how people living with epilepsy live with the illness and manage it in their everyday lives. The study recommends that management of epilepsy at individual should incorporate the community‘s perception of the illness.