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

癫痫患者的癫痫发作频率、生活质量和耻辱感减少

基本信息

批准号：
9910478
负责人：
Mark Kaddumukasa
金额：
$ 9.66万
依托单位：
MAKERERE UNIVERSITY COLLEGE OF HEALTH SCIENCES
依托单位国家：
美国
项目类别：
财政年份：
2017
资助国家：
美国
起止时间：
2017-08-22 至 2022-03-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9910478
关键词：
Address Adopted Adult Affect Africa Africa South of the Sahara African Appointment Award Awareness Behavior Caring Chronic Collaborations Communicable Diseases Country Coupled Data Disease Disease Management Employment Ensure Epilepsy Frequencies Funding Government Guidelines HIV Health Health Sciences Hospitalization Impact Seizures Individual Intervention Knowledge Learning Life Style Malaria Marriage Mentors Mentorship Morbidity - disease rate Nature Neurology Occupations Patient Care Patients Personal Satisfaction Pharmaceutical Preparations Population Prevalence Productivity Prospective Studies Psychosocial Influences Public Health Quality of life Research Research Personnel Schools Seizures Self Management Severity of illness Stigmatization Strategic Planning Stroke Techniques Testing Training Uganda Universities Work behavioral outcome brain health burden of illness clinical predictors college comorbidity data tools disorder prevention experience follow-up high risk population implementation strategy improved low and middle-income countries mortality nervous system disorder next generation novel strategies obstetrical complication programs psychosocial response senior faculty side effect skills social culture social exclusion social stigma symptom management therapy design training opportunity vehicular accident

项目摘要

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.

项目概要：癫痫仍然是撒哈拉以南非洲地区发病的主要原因之一。相关性癫痫发病率可以随着生活质量的提高而降低。再加上社会排斥和耻辱感，发病率进一步加剧了癫痫患者的社会心理痛苦和孤独。最大的问题是，公众对艾滋病的性质缺乏认识，许多癫痫患者都面临着这样的问题。癫痫患者可能会被禁止上学，成年人可能会被禁止婚姻，就业往往被拒绝。在之前的一项研究中，超过一半的人感到受到了侮辱，18%的人认为自己受到了侮辱。因为他们的癫痫病而感到非常耻辱。在撒哈拉以南的非洲，很少有研究探讨这一问题没有人设计干预措施来解决这个问题。因此，我们建议扩大知识，癫痫、生活质量和心理社会负担。我们将利用已经建立的马凯雷健康科学学院的支持。此程序将纳入马凯雷雷大学健康科学学院现有的研究框架（三）确保圆满完成。马凯雷雷大学的高级教师将提供指导并接受凯斯西储经验丰富的同事的共同指导大学，以确保实现该计划的目标。这一建议符合政府的要求，《乌干达卫生部门战略计划》强调能力建设和为所有人提供适当的保健乌干达人通过本计划的结束，一个关键的初步数据，工具和技术的癫痫研究将被开发。相关性：提高了各国的专门知识，更好地了解癫痫研究，特别是与健康相关的问题。生存和提高生活质量是理解和形成战略指导方针和自我的关键改善病人护理和癫痫控制的管理方法。