Epilepsy Treatment in Zambia: Assessing Cultural Factors
Photo by Tom Lehr
A patient's mother (left) discusses treatment issues with Monica Sapuwa, R.N. (center), of Queen Elizabeth Central Hospital, Blantyre, Malawi, and Gretchen Birbeck (right).
Epilepsy has long been recognized as a stigmatizing disorder. Most people with epilepsy reside in the developing world, but little is known regarding the impact of epilepsy-associated stigma in this environment. In sub-Saharan Africa, traditional belief systems and lack of access to anti-seizure medication may worsen both the burden and the stigma of the disease. The development of culturally appropriate programs for decreasing this burden requires more knowledge of how people with epilepsy experience their condition and society's understanding of epilepsy. Many people in the region access care through traditional healers rather than through the formal medical system, so the conceptualization of epilepsy and epilepsy care by these healers also deserves assessment.
"In sub-Saharan Africa, traditional belief systems and lack of access to anti-seizure medication may worsen both the burden and the stigma of the disease.
To understand the social and economic consequences of epilepsy-associated stigma in Zambia, Birbeck's project is conducting focus groups of adults with epilepsy and the parents of children with epilepsy, ethnographic interviews with traditional healers, a survey of social groups influential in the lives of people with epilepsy, and a case-control study of people with and without epilepsy seeking medical care from the same source. This contextual framework will guide the development of effective, community-based interventions aimed at improving the lives of people with epilepsy in the region.
Partners on this project include the University of Zambia in Lusaka and a number of Zambian hospitals and health service agencies. The work is ongoing.
Dr. Birbeck is also interested in how cultural factors of developing countries influence health care delivery for other common neurologic conditions. In addition to the Zambia study she is investigating cerebral malaria (a suspected risk factor for epilepsy) in Malawi and HIV treatment issues in rural areas of Zambia. She recently completed additional training in epilepsy to further this work.
International Neurologic and Psychiatric Epidemiology Program
MSU recently established a new international program that will study neurologic and psychiatric disorders in developing countries.
Problems like epilepsy, cerebral palsy, dementia, and neuropathies are far more common in developing countries than in the US. Yet clinical specialists, who are trained to provide care for people with nervous system disorders, and researchers, who can conduct studies to understand the high rates of these problems, are almost nonexistent in less developed regions of the world.
The office of the Provost, the Colleges of Osteopathic Medicine and Human Medicine, and several MSU departments provided funds to support the new International Neurologic and Psychiatric Epidemiology Program (INPEP). INPEP will foster research and training programs to improve our understanding of why neurologic disorders are so problematic in the developing world, identify opportunities for prevention and treatment of these devastating conditions, and work with local researchers and healthcare professionals to improve both care to patients and in-country research capacity. Current INPEP studies include neurologic injuries among cerebral malaria survivors in Malawi, the social and economic impact of epilepsy-associated stigma in Zambia, and the epidemiology of psychiatric disturbances and drug dependence in over 30 countries. Dr. Gretchen Birbeck directs the program.