Bhwana Dan, Das Lies, Siewe Fodjo Joseph Nelson, Francis Filbert, Challe Daniel P, Makunde Holmes W, Mmbando Bruno P, Colebunders Robert
National Institute for Medical Research, Tanga Research Centre, Tanga, Tanzania; Global Health Institute, University of Antwerp, Antwerp, Belgium.
Global Health Institute, University of Antwerp, Antwerp, Belgium.
Epilepsy Behav. 2021 Oct 28;124:108372. doi: 10.1016/j.yebeh.2021.108372.
A high burden of epilepsy has been reported in sub-Saharan Africa (SSA) particularly in onchocerciasis endemic areas. To improve the quality of life of persons with epilepsy (PWE) in Mahenge, an onchocerciasis-endemic area in Tanzania, we established peer support groups (PSG) in two out of four rural villages (Mdindo, Msogezi, Mzelezi and Sali). One year later (between February and July 2020), we carried out a cross-sectional survey among PWE and their caregivers in the four rural villages with the aim of comparing perceived stigma among PWE in study sites with and without PSG. Perceived stigma was measured using the validated Kilifi stigma scale of epilepsy (KSSE), whose total score ranges from 0-30. A generalized linear mixed regression model was used to identify factors associated with high stigma scores. A total of 161 PWE participated in the study; 76 (47.2%) resided in villages where a PSG intervention was implemented. The overall mean stigma score was 3.7 ± 4.6, with no significant difference between villages with and without PSG (p = 0.537). Only one PWE (0.6%) scored above 20 (very high perceived stigma). Experiencing more seizures during the past week (Coef = 1.013 [0.568, 1.457]), having attended school (Coef = 1.821 0.345, 3.297], and a history of physical abuse (Coef = 3.200 [0.574, 5.827]) were associated with higher stigma scores. Perceived stigma in rural villages in Mahenge is a major public health problem. A follow-up study is needed to determine the medium- to long-term effect of the PSG intervention on perceived epilepsy-related stigma.
据报道，撒哈拉以南非洲地区（SSA），尤其是盘尾丝虫病流行地区的癫痫负担很重。为了改善坦桑尼亚盘尾丝虫病流行地区马亨盖癫痫患者（PWE）的生活质量，我们在四个乡村中的两个（姆丁多、姆索盖齐、姆泽莱齐和萨利）建立了同伴支持小组（PSG）。一年后（2020年2月至7月），我们在这四个乡村对癫痫患者及其照料者进行了横断面调查，目的是比较有和没有同伴支持小组的研究地点的癫痫患者的感知耻辱感。使用经过验证的基利菲癫痫耻辱感量表（KSSE）来测量感知耻辱感，其总分范围为0至30分。采用广义线性混合回归模型来确定与高耻辱感得分相关的因素。共有161名癫痫患者参与了该研究；76名（47.2%）居住在实施了同伴支持小组干预措施的村庄。总体平均耻辱感得分为3.7±4.6，有和没有同伴支持小组的村庄之间没有显著差异（p=0.537）。只有一名癫痫患者（0.6%）得分高于20分（感知耻辱感非常高）。在过去一周内癫痫发作次数更多（系数=1.013[0.568，1.457]）、上过学（系数=1.821[0.345，3.297]）以及有身体虐待史（系数=3.200[0.574，5.827]）与较高的耻辱感得分相关。马亨盖乡村地区的感知耻辱感是一个主要的公共卫生问题。需要进行一项后续研究，以确定同伴支持小组干预措施对感知到的癫痫相关耻辱感的中长期影响。
