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苏丹喀土穆索巴大学医院和国家神经科学中心(NCNS)门诊中癫痫患者所遭受的污名化。

Stigma on epileptic patients attending the outpatient clinic of Soba University Hospital and the National Center for Neurological Science (NCNS) Khartoum, Sudan.

作者信息

Bashir Muwada Bashir Awad, Abdalla Shahd Mohammed, Nkfusai Ngwayu Claude, Nsai Frankline Sanyuy, Cumber Rosaline Yumumkah, Tsoka-Gwegweni Joyce Mahlako, Cumber Samuel Nambile

机构信息

Discipline of Medicine and Surgery, Faculty of Medicine University of Khartoum, Kkartoun, Sudan.

Section for Epidemiology and Social Medicine, Department of Public Health, Institute of Medicine, The Sahlgrenska Academy at University of Gothenburg, Gothenburg, Sweden.

出版信息

Pan Afr Med J. 2019 Feb 27;32:93. doi: 10.11604/pamj.2019.32.93.17511. eCollection 2019.

Abstract

INTRODUCTION

Epilepsy is one of the most prevalent neurological conditions for people of different age group, race, gender and socio-economic status in various nations, affecting 50 million people around the world; 80% of them living in developing countries. In Sudan, literature has well documented epilepsy stigma and it related elements of labelling, negative typecasting, isolation, devaluing and discrimination that are significantly affecting patients living standards and social life. This study focuses on understanding the prevailing, different types of stigma among people living with epilepsy (PWE) in Sudan and to determine its frequency in connection with demographic factors and patients coping ability of PWE.

METHODS

A health facility-based cross-sectional descriptive study was conducted on 270 people between the ages of 16-70years who are affected by epilepsy in an outpatient clinic. Standardized questionnaires were used to interview the patients with assistance gotten from their relative where necessary. The data is analyzed using SPSS version 20. The study was conducted in the outpatient clinic of The National Center for Neurological Sciences (NCNS), Ibrahim-Malik Teaching Hospital Sudan.

RESULTS

The study realized that 16.6% of the patient had a positive self-stigma score, half of them having coaching stigma and 25% courtesy stigma. One third of people with epilepsy had poor coping score that was strongly determined by self- stigma and courtesy stigma score.

CONCLUSION

Parents and relatives related sigma is a major problem facing people of epilepsy in Sudan; thus, raising such group awareness and education about the disease can markedly improve the quality of life of people with epilepsy in Sudan.

摘要

引言

癫痫是不同年龄组、种族、性别和社会经济地位的人群中最普遍的神经系统疾病之一,在各个国家均有发生,全球约有5000万人受其影响;其中80%生活在发展中国家。在苏丹,文献充分记录了癫痫污名及其相关的标签化、负面定型、孤立、贬低和歧视等因素,这些因素严重影响着患者的生活水平和社会生活。本研究旨在了解苏丹癫痫患者中普遍存在的不同类型的污名,并确定其与人口统计学因素以及患者应对能力的关联频率。

方法

在一家门诊诊所对270名年龄在16至70岁之间的癫痫患者进行了一项基于医疗机构的横断面描述性研究。使用标准化问卷对患者进行访谈,必要时从其亲属处获取协助。数据使用SPSS 20版进行分析。该研究在苏丹易卜拉欣 - 马利克教学医院国家神经科学中心的门诊诊所进行。

结果

研究发现16.6%的患者自我污名得分呈阳性,其中一半有引导性污名,25%有礼遇性污名。三分之一的癫痫患者应对得分较低,并强烈受自我污名和礼遇性污名得分的影响。

结论

在苏丹,父母和亲属相关的污名是癫痫患者面临的一个主要问题;因此,提高这类人群对该疾病的认识和教育可以显著改善苏丹癫痫患者的生活质量。

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