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.

项目摘要：在撒哈拉以南非洲，癫痫仍然是发病率的主要原因之一。相关癫痫通过改善的生活质量可以降低发病率。再加上社会排斥和感知的污名，发病率进一步加剧了患有癫痫患者的社会心理痛苦和孤立。污名主要是由于缺乏公众对疾病性质的认识而引起的，这是最大的问题面对许多患有癫痫的人。患有癫痫的人可能被禁止上学，成人可能被禁止从婚姻和就业经常被拒绝。在先前的研究中，超过一半的感觉被污名化，18％很少有研究在撒哈拉以南非洲检查了这一主题没有人设计干预措施来解决这一问题。因此，我们建议扩大有关的知识在我们的环境中，癫痫，生活质量和社会心理伯伦斯。我们将利用已经建立的Makerere健康科学学院的支持。这个程序将纳入Makerere大学健康科学学院现有研究框架（Makchs）确保成功完成。 Makerere University的高级教师将提供Mentalship 以及PI的专业知识，并从Case Western获得经验丰富的同事的会议大学以确保实现该计划的目标。该提议与政府一致乌干达卫生部门战略计划，该计划突出了建筑能力并为所有人提供足够的护理乌干达人。到该计划的结尾，癫痫研究的关键初步数据，工具和技术将开发。关联：提高了国内专业知识和对癫痫研究的更好了解，尤其是在与井相关的问题中存在和改善的生活质量对于理解和制定战略准则和自我至关重要改善患者护理和癫痫发作控制的管理方法。