CONTRIBUTORS
Charity Chao Shete
Communications Officer
Diana Munjuri
Senior Communications Officer
Contributors: Charity Chao Shete and Diana Munjuri
On a sunny Thursday afternoon, in the sprawling slum of Korogorcho, Nairobi, we meet Mary attending to her teenage son who suffers from epilepsy. Mary, the family’s sole breadwinner, works tirelessly, braving countless challenges to care for her son. Recently, she terminated her work contract as a casual laborer to care for her son. She is a mother determined to support her only son in overcoming the challenges that come with his condition. Mary’s story highlights the personal impact of a condition affecting millions worldwide.
The World Health Organization (WHO) defines epilepsy as a chronic condition involving recurrent unprovoked seizures, which can be caused by abnormal discharges in the brain. These seizures may vary in form and severity, and in some cases, no specific cause can be identified.
WHO estimates that five million people are diagnosed annually with the non-communicable disease, and 80% of these people live in low-and-middle-income countries (LMICs). It further emphasizes that epilepsy is a significant public health concern, particularly in LMICs, where up to 80% of the patients lack necessary treatment due to resource limitations, insufficient trained healthcare providers, unaffordable medications, and cultural beliefs that hinder proper care-seeking and treatment adherence.
Epilepsy has a disproportionate impact in Sub-Saharan Africa, where both prevalence rates and mortality are higher than in other regions of the world. Yet, despite increased awareness of epilepsy’s higher prevalence in the region, the condition remains veiled in secrecy and stigma. Owing to how epilepsy manifests, those affected often face misinformation, fear, and social stigma that significantly impact their quality of life. The constant dread of public seizures leads many to limit social interactions, resulting in isolation and mental distress.
At APHRC, we continue to accelerate our efforts to address some epilepsy-related challenges. The Center carried out the Epilepsy Pathway Innovation in Africa (EPInA) study from 2020 – 2024, aimed at determining the prevalence of epilepsy in informal settlements of Nairobi, estimating the accuracy of an app-based technology used by primary health care workers for improving the rate of diagnosis of epilepsy and examining how sociocultural beliefs and stigma influence diagnosis and treatment of people with epilepsy (PWE) in Nairobi’s informal settlements of Korogocho and Viwandani.The study findings showed a high prevalence of epilepsy in the two urban informal settlements, with non-convulsive epilepsy contributing to about one-third of observed cases. These findings are being used by the Nairobi City County and other partners to inform policy and programming.
Through this study, APHRC experts demonstrated how digital technology in the form of an epilepsy diagnostic companion (EDC) can be used to diagnose epilepsy at the primary healthcare level reliably. We engaged healthcare providers in the app validation by screening 873 probable cases of epilepsy in 2022.
The project has supported the rollout of the WHO Mental Health Gap Intervention Guide for mental, neurological, and substance use implementation guidelines. This is through training of over 120 mental health focal persons and primary health workers to screen, diagnose, treat, and manage people with epilepsy. In turn, this has empowered primary health care workers who are not neurological specialists to provide epilepsy services, hence improving the quality of care for patients with epilepsy and reducing the catastrophic cost burden of seeking care in far-reaching facilities.
The project established a digital reporting system and a live dashboard for reporting and visualizing mental health data in Nairobi City County. The system is a form of electronic medical record that has helped healthcare workers report new cases of mental health conditions, including epilepsy, in real time. This reporting and visualization system has enhanced understanding of the mental health burden in Nairobi City County, and its data is now used to inform programming and policy decisions on mental health within the County. The system attracted interest from Kilifi County which has worked on replicating and adapting it. The technical team from APHRC and KEMRI-Wellcome Trust Research Programme, collaborators in the project, supported the initial conceptualization and design of the system in Kilifi.
This project also explored how sociocultural beliefs and stigma in urban–poor communities influence care-seeking, diagnosis, and treatment for epilepsy. It established knowledge pathways that can counter sociocultural beliefs and the stigma associated with epilepsy. Advocacy messages to address stigma and improve care for individuals with epilepsy were co-created and disseminated among the target population.
To enhance epilepsy treatment adherence, the project team conducted a trial using short messages (SMS) reminders to assess if they could improve medication adherence, leading to better treatment outcomes.
The project has been of great help to Mary’s son and others living with the condition. At the health facility level, he is offered good quality care through proper diagnosis, treatment, and management. The SMS reminders have helped in improving his adherence to treatment. Through the advocacy messages on stigma and improved care for individuals with epilepsy, his mum has been empowered to continue taking care of him.
The EPInA project has also been implemented in Kilifi, Tanzania, and Ghana by other collaborating partners.