Makerere University College of Health Sciences, Medicine.
Mulago National Referral Hospital, Medicine.
Afr Health Sci. 2022 Mar;22(1):252-262. doi: 10.4314/ahs.v22i1.32.
Epilepsy is associated with stigma and negatively impacts the lives of people living with epilepsy (PLWE) and their immediate families. More understanding of the stigma and discrimination experienced by PLWE in sub-Saharan Africa is needed.
In a cross-sectional, mixed methods study, forty- eight PLWE who met the study inclusion criteria were enrolled. In depth interviews and focus group discussions were conducted and were audiotaped and transcribed verbatim. Analysis was conducted using a thematic, constant comparative approach with an emphasis on dominant themes. Perceived stigma was measured using the Kilifi epilepsy stigma score. Associations between socio-demographic factors and Kilifi epilepsy stigma score were assessed.
The median age of the study participants was 25 years, with median age (IQR) of epilepsy onset of 12 (6-18) years. The prevalence of high-perceived stigma was 31.9% (15/48). Seizure frequency was associated with high levels of perceived stigma (p-value of 0.038). Psychological abuse, rejections at home, places of employment and schools, poor relationships and intimacy and unmet engagements in social activities were cited as the perceived stigmatizing aspects among PLWE.
In this Ugandan sample perceived stigma remains unacceptably high and interventions to address it are urgently needed in our settings.
癫痫与耻辱感有关，会对癫痫患者（PLWE）及其直系亲属的生活产生负面影响。我们需要更多地了解撒哈拉以南非洲地区 PLWE 所经历的耻辱和歧视。
在一项横断面、混合方法研究中，纳入了符合研究纳入标准的 48 名 PLWE。进行了深入的访谈和焦点小组讨论，并进行了录音和逐字转录。分析采用主题式、恒定性比较方法进行，重点关注主要主题。使用基利菲癫痫耻辱量表来衡量感知耻辱感。评估了社会人口因素与基利菲癫痫耻辱量表之间的关联。
研究参与者的中位年龄为 25 岁，癫痫发病的中位年龄（IQR）为 12 岁（6-18 岁）。高感知耻辱感的患病率为 31.9%（15/48）。发作频率与高感知耻辱感相关（p 值为 0.038）。心理虐待、家庭、工作场所和学校的排斥、不良关系和亲密关系以及无法参与社会活动被认为是 PLWE 感知到的污名化方面。
在乌干达的这一样本中，感知耻辱感仍然高得令人无法接受，在我们的环境中迫切需要采取干预措施来解决这一问题。
