Tora Abebayehu, Franklin Hannah, Deribe Kebede, Reda Ayalu A, Davey Gail
Department of Sociology, Wolaita Sodo University, Sodo, Ethiopia.
Brighton and Sussex Medical School, Brighton, UK.
Springerplus. 2014 Nov 1;3:647. doi: 10.1186/2193-1801-3-647. eCollection 2014.
Studies have indicated that social stigma related to podoconiosis (endemic non-filarial elephantiasis) has a major impact on the psychosocial wellbeing of patients. However, little effort has been made so far to quantify the level of both felt and enacted stigma in a range of domains of life. We used a recently developed podoconiosis stigma assessment scale to measure levels of stigma as recalled over the previous 12 months. One hundred and fifty patients with podoconiosis rated the levels of stigma they perceived and experienced in 'interpersonal interactions', 'major life areas' and 'community, social and civic life'. High levels of stigma were observed on both felt and enacted stigma scales. The overall average stigma score was 40.7 (range 0 to 96). Enacted stigma was scored higher than felt stigma (mean score 21.2 vs. 19.5, respectively). The mean enacted stigma score was higher in 'major life areas', and 'community, social and civic life' than 'interpersonal interactions', while felt stigma was experienced most at the interpersonal level. Over half of patients reported that they had considered suicide in response to discrimination and prejudice, particularly in interpersonal interactions. Forced divorce, dissolution of marriage plan, insults and exclusion at social events were some of the most commonly mentioned forms of enacted stigma reported by affected individuals. Scores for overall level of stigma and enacted stigma increased significantly with stage of podoconiosis while the association observed in relation to felt stigma was only marginally significant (p = 0.085). Appropriate stigma reduction strategies must be identified and implemented in communities highly endemic for podoconiosis.
研究表明,与地方性非丝虫性象皮病(即足分支菌病)相关的社会耻辱感对患者的心理社会福祉有重大影响。然而,迄今为止,在量化生活各个领域中感受到的耻辱感和表现出的耻辱感方面,所做的努力甚少。我们使用最近开发的足分支菌病耻辱感评估量表来衡量过去12个月中回忆起的耻辱感水平。150名足分支菌病患者对他们在“人际互动”、“主要生活领域”以及“社区、社会和公民生活”中所感知和经历的耻辱感水平进行了评分。在感受到的耻辱感和表现出的耻辱感量表上均观察到了较高水平的耻辱感。耻辱感总体平均得分为40.7(范围为0至96)。表现出的耻辱感得分高于感受到的耻辱感(平均得分分别为21.2和19.5)。在“主要生活领域”以及“社区、社会和公民生活”中,表现出的耻辱感平均得分高于“人际互动”,而在人际层面感受到的耻辱感最为强烈。超过半数的患者报告称,他们曾因歧视和偏见而考虑过自杀,尤其是在人际互动中。被迫离婚、婚姻计划解除、社交活动中的侮辱和排斥是受影响个体报告的一些最常见的表现出的耻辱感形式。耻辱感总体水平和表现出的耻辱感得分随着足分支菌病的阶段显著增加,而与感受到的耻辱感的关联仅略微显著(p = 0.085)。在足分支菌病高度流行的社区中,必须确定并实施适当的减少耻辱感策略。