Epilepsy is the most common chronic neurologic disorder in many resource poor regions. In Africa, epilepsy-associated stigma and the resulting social sequelae and medical morbidity and mortality of the disorder contribute substantially to the burden of neurologic disease. Despite affordable medications, <10% of people with epilepsy (PWE) in sub-Saharan Africa are receiving treatment. Using insights and information gained from our previously conducted quantitative and qualitative work in Zambia, we will develop, implement and evaluate a multi-faceted series of evidence-based interventions aimed at decreasing epilepsy-associated stigma, improving the socioeconomic status of PWE and lowering the rates of seizure-related morbidity and mortality in four Zambian Provinces. Five distinct interventions will be initiated-(1) Advocacy teams to educate policy-makers regarding the burden of epilepsy and the cost-effectiveness of treatment;(2) Educational programs customized for specific """"""""power"""""""" groups including teachers, clerics and police officers and designed to improve knowledge regarding epilepsy and tolerance for PWE;(3) Continuing medical education programs for non-physician healthcare workers, who provide much of the healthcare in Zambia, aimed at improving seizure-related care and decreasing stigmatizing attitudes;(4) Exchange programs to facilitate bridging relationships between traditional healers and the formal health services sector with the goal of developing referral mechanism for people with refractory seizures seen only by healers;(5) Peer support groups for women with epilepsy using participatory learning, action curriculum and microfinance programs. For each intervention, intermediate outcomes (process measures) will be assessed. For example, the availability of epilepsy medication in public hospitals, clinics and pharmacies will be evaluated before and after the advocacy program. Pre- and post-intervention data will be compared for relevant ultimate outcomes including self-reported stigma among PWE, the socioeconomic status of PWE relative to people with other non-stigmatized chronic medical conditions, and inpatient seizure-related deaths. Research capacity building plans to be carried out in conjunction with the interventions outlined above include, (1) Research support skills for local staff;(2) Formal training in grants management for 2-3 Zambian administrators to be conducted in the US. These individuals will then conduct intra-Zambian courses for further dissemination of these expertise;(3) PhD-level training in Community Health at the University of KwaZulu-Natal for one of the Zambian-co-investigators who will complete his thesis evaluating comorbid epilepsy and depression in Zambia;and (4) Graduate level training at the University of Zambia in Social Anthropology for a Zambian graduate student who will pursue studies related to this work.
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