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Stigma Report

Success Story

The Fogarty "Stigma and Global Health" research award program was created to stimulate interdisciplinary, investigator-initiated research on the role stigma plays in health, and on interventions to prevent--or mitigate--its negative effects on the health and welfare of individuals, groups and societies world-wide.

Dr. Gretchen Birbeck, Michigan State University, in collaboration with colleagues Dr. Alan Haworth, Dr. Masharip Atadzhanov and Dr. Elwyn Chomba, University of Zambia School of Medicine and Mr. Eddie Mbewe, Chainama Hills Hospital are spearheading research to improve the lives of children and adults with epilepsy.

The team has been conducting research into epilepsy-associated stigma, under the program, since receiving an R21 planning grant--awarded by NINDS and co-funded by Fogarty in 2003.

Since the award, the research team has published three papers on epilepsy and behavior that examine the attitudes, beliefs and practices of health-care workers, clerics and teachers towards people with epilepsy.

"The Zambian colleagues are proud to work with Dr. Birbeck who is leading our team's work on epilepsy and stigma--an often neglected and ill understood area in which these lives can be improved," said Dr. Elwyn Chomba.

"Epilepsy remains the most common chronic cerebral disease among adult and pediatric neurological patients in Zambia. The study highlights not only the social and economic impact of epilepsy in Zambia, it sheds light on the major problems encountered by both patients with epilepsy and health professionals. The role of Dr. Birbeck in this study is not possible to overestimate," Dr. Alan Haworth stated.

In the January 2007 issue of The Lancet Neurology, Birbeck and her collaborators described some of the social and economic effects associated with epilepsy in Africa. The team investigated the social and economic consequences of epilepsy from the perspective of diverse groups--its aim to elucidate the social, psychological and economic context necessary to faciliate development of interventions that will improve the lives of people living with epilepsy in the region.

Their study shows people living with epilepsy in Zambia are likely to be poorer and of lower social status than people living with other non-stigmatizing chronic disorders. Having the disease meant that people were less likely to marry or have had formal education. Their housing was poorer and they had less access to water, electricity and other basic resources than their peers--suboptimum housing exposed these individuals to burns and drowning during a seizure.

People with epilepsy reported higher rates of physical abuse from members of their households. Women with epilepsy were significantly more likely to have been raped. Rape rates were 20% for women with epilepsy vs. 3% of the control group (p=0.004). The prevalence of HIV in Zambia would suggest that women with epilepsy are at an increased risk of contracting this and other sexually transmitted infections.

Birbeck G, Chomba E, Atadzhanov M, Mbewe E, Haworth A. Lancet Neurology, Vol. 6, Issue 1, January 2007, Pages 39-44.