Seizure frequency, Quality of Life and stigma reduction in people living with epilepsy

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Project Summary: Epilepsy still remains one of the leading causes of morbidity in sub Saharan Africa. Associated epilepsy morbidity can be reduced with improved quality of life. Coupled with social exclusion and perceived stigma, this morbidity further exacerbates the psychosocial suffering and isolation among people living with epilepsy. Stigma, is largely caused by the lack of public awareness of the nature of the disease, is the greatest problem faced by many people with epilepsy. People with epilepsy may be banned from school, adults may be barred from marriage, and employment is often denied. In a previous study, more than half felt stigmatized, and 18% felt highly stigmatized because of their epilepsy. Few studies have examined this subject in sub-­Saharan Africa and none has designed interventions to address this. We therefore propose to expand the knowledge of epilepsy, quality of life and psychosocial burdens in our settings. We will leverage support from the already established Makerere College of Health Sciences. This program will be integrated within the existing framework of research at Makerere University College of Health Sciences (MakCHS) to ensure its successful completion. Senior faculty at Makerere University will provide mentorship and expertise for the PI as well as receive co-­mentorship from experienced colleagues at Case Western University to ensure achieving the objectives of the program. This proposal is in line with the government of Uganda Health Sector Strategic Plan that highlights building capacity and provision of adequate care for all Ugandans. By the end of this program, a critical preliminary data, tools and techniques for epilepsy research will have been developed. Relevance: Improved in-­country expertise and better knowledge of epilepsy research especially in issues related to well being and improved quality of life are be critical in understanding and forming strategic guidelines and self management approaches for improving patient care and seizure control.