Epilepsy is one of the most common conditions that affect the brain and the impact of the condition is enormous particularly in countries from sub-Saharan Africa (SSA). This high incidence is, in at least a quarter of cases, because of preventable factors, yet many people who may have had seizures are not diagnosed and even fewer receive appropriate treatments. This multisite study seeks to address four broad questions across four sites including Kilifi (Kenya), Nairobi (Kenya), Accra (Ghana) and Mahenge (Tanzania).
Within the EPINA study in Kilifi we have several streams of work.
We hold interviews and discussions including oral histories with people with epilepsy, healthcare providers and traditional health practitioners to understand the idioms or terms used to describe seizures that are not physically visible “non-convulsive seizures” and epilepsy and the lived experience of people with epilepsy and their caregivers.
We train primary healthcare workers on the World Health Organisation’s mhGAP-IG which is a manual for easy identification and management of epilepsy and other mental, neurological and substance use disorders. The training takes about 10-days consecutive days and involves healthcare workers from public health facilities within Kilifi County.
We send mobile message reminders to people with epilepsy to remind them to take their medications as prescribed. The messages are sent at pre-defined times and adherence is measured at enrolment into the study, 3, 6 and 12 months after enrolment using self-reporting measures and validated by measuring medication levels in blood.