Epilepsy-associated stigma in Zambia

Michigan State University, East Lansing MI

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Abstract

DESCRIPTION (provided by applicant): 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 antiepileptic agents may worsen the burden of disease and stigma among people with epilepsy (PWE), but the social and economic consequences of epilepsy in this environment are poorly understood. Prior cross-cultural work has suggested that in countries where epilepsy is more heavily stigmatized, epilepsy-associated stigma may drives health-related quality of life (HRQOL) in PWE. The development of culturally appropriate programs for decreasing the burden of epilepsy and epilepsy-related stigma in sub-Saharan Africa requires substantive knowledge of how PWE experience their condition and society's understanding of epilepsy. Since many PWE access care though traditional healers rather than the formal medical system, the conceptualization of epilepsy and epilepsy care by these healers also deserves assessment. To begin to understand the social and economic consequences of epilepsy-associated stigma in Zambia, this study will include (1) focus groups of adults with epilepsy and the parents of children with epilepsy utilizing grounded theory analysis to develop a paradigm for understanding the experience of being a person with epilepsy in Zambia and to draft potential items for the later development of an epilepsy-specific HRQOL measure for use in this population, (2) an ethnographic study of traditional healers using key informant interviews, (3) a survey of social groups influential in the lives of PWE to assess their knowledge, beliefs, attitudes and practices regarding epilepsy, and (4) a case-control study of people with and without epilepsy seeking medical care from the same source to assess the socioeconomic impact of epilepsy in Zambia. Understanding epilepsy from the perspectives of these diverse groups will allow the development of a comprehensive understanding the social, psychological and economic context of epilepsy in this environment. This contextual framework will facilitate the development of effective, community-based interventions aimed at improving the lives of people with epilepsy in the region.