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Epilepsy beliefs and misconceptions among patient and community samples in Uganda
Epilepsy & Behavior ( IF 2.3 ) Pub Date : 2021-01-01 , DOI: 10.1016/j.yebeh.2020.107300
Mark Kaddumukasa 1 , Patrick J Smith 2 , Martin N Kaddumukasa 3 , Mayanja Kajumba 4 , Alysa Almojuela 5 , Samuel Bobholz 6 , Payal Chakraborty 7 , Drishti D Sinha 8 , Noeline Nakasujja 9 , Angelina Kakooza-Mwesige 10 , Alex Gualtieri 11 , Erica Onuoha 8 , Juliet Nakku 12 , Nadine Sanchez 7 , Christine Muhumuza 13 , Anthony T Fuller 14 , Michael M Haglund 14 , Deborah C Koltai 15
Affiliation  

OBJECTIVE The objective of the study was to characterize and compare the attitudes, beliefs, and perceptions about epilepsy across community and patient cohorts in Uganda. METHODS This was a descriptive study utilizing two samples: a randomly selected, national survey community sample and a hospital-based patient sample of people with epilepsy (PWE) and their caregivers attending clinic settings in Kampala and Mbarara, Uganda for epilepsy care. Both samples were surveyed about their beliefs about epilepsy, its treatment, and people who have the illness. Multivariate linear regression was used to examine group differences and variables associated with specific beliefs. RESULTS Among the 15,818 community survey participants who participated in this study, 435 study participants reported symptoms suggestive of recurrent seizures, and all 626 subjects in the hospital-based sample had confirmed epilepsy. Results revealed significant differences across groups in their endorsement of epilepsy as a contagion; 37% of people in the community unaffected by epilepsy, and 39% of people with suspected epilepsy who did not seek care believed that epilepsy was contagious by touch, in contrast to 8% of PWE or their caregivers attending regular hospital-based care. Higher educational attainment and income, and seeking regular hospital-based medical care were associated with less endorsement of epilepsy as a contagion, while age, education, income, area of residence, and presence of seizure symptoms, were significant predictors of support or belief in the basic rights of PWE. Study participants within the community who screened negative for seizures placed the most restrictions on rights for PWE. To varying degrees, the samples all endorsed the effectiveness of allopathic, traditional, and religious providers, and the use of pharmaceutical drugs, traditional rituals and herbs, and prayer. CONCLUSIONS People with epilepsy who are attending biomedical care for routine epilepsy care think differently about epilepsy, its treatment, and the rights of those with the disease than the general population. Within the community setting, more erroneous beliefs and negative attitudes about epilepsy and PWE persist, and they not only contribute to stigma but also interfere with the patients' health-seeking behavior. Further confounding the care of PWE, the pluralistic healthcare system in Uganda is evident in endorsements spanning biomedical, traditional, and religious treatment methods. Focused awareness campaigns utilizing local epilepsy societies are needed to promote epilepsy health literacy, to favorably impact acceptance and opportunities for PWE in Uganda, and to facilitate efficient uptake of biomedical care. This article is part of the Special Issue "The intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".

中文翻译:

乌干达患者和社区样本中的癫痫信念和误解

目的 本研究的目的是描述和比较乌干达社区和患者群体对癫痫的态度、信念和看法。方法 这是一项描述性研究,使用两个样本:随机选择的全国调查社区样本和基于医院的癫痫患者样本 (PWE) 及其在乌干达坎帕拉和姆巴拉拉的诊所就诊以进行癫痫护理的护理人员。两个样本都接受了关于他们对癫痫、治疗和患有这种疾病的人的看法的调查。多元线性回归用于检查与特定信念相关的群体差异和变量。结果 在参与本研究的 15,818 名社区调查参与者中,435 名研究参与者报告了提示复发性癫痫发作的症状,医院样本中的所有 626 名受试者均确诊为癫痫。结果显示,不同群体在认可癫痫是一种传染病方面存在显着差异;社区中 37% 的未受癫痫影响的人以及 39% 未寻求护理的疑似癫痫患者认为癫痫会通过接触传染,而在常规医院护理的 PWE 或其护理人员中,这一比例为 8%。较高的教育程度和收入,以及寻求定期医院医疗保健与较少认可癫痫是一种传染病有关,而年龄、教育、收入、居住地区和癫痫症状的存在是支持或相信癫痫的重要预测因素PWE的基本权利。社区内癫痫筛查阴性的研究参与者对 PWE 的权利施加了最大的限制。在不同程度上,样本都认可对抗疗法、传统和宗教提供者的有效性,以及药物、传统仪式和草药以及祈祷的使用。结论 接受常规癫痫护理的生物医学护理的癫痫患者对癫痫、其治疗以及患有该疾病者的权利的看法与一般人群不同。在社区环境中,更多关于癫痫和PWE的错误信念和负面态度持续存在,它们不仅助长了耻辱感,而且干扰了患者的求医行为。进一步混淆了 PWE 的护理,乌干达多元化的医疗保健系统在生物医学、传统和宗教治疗方法的认可中体现得淋漓尽致。需要利用当地癫痫协会开展有针对性的宣传活动,以促进癫痫健康素养,有利地影响乌干达 PWE 的接受度和机会,并促进生物医学护理的有效采用。本文是特刊“文化、资源和疾病的交叉点:乌干达的癫痫护理”的一部分。
更新日期:2021-01-01
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