Brieger W R, Oshiname F O, Ososanya O O
African Regional Health Education Centre, College of Medicine, University of Ibadan, Nigeria.
Soc Sci Med. 1998 Oct;47(7):841-52. doi: 10.1016/s0277-9536(98)00007-0.
Skin diseases have been a major source of social stigma, whether they be infectious or not. The potential stigamtizing effect of skin disease associated with onchocerciasis is currently receiving attention because half of the 17 million victims of onchocerciasis in Africa live where the non-blinding form of the disease is prevalent. Some reports are available that onchocercal skin disease (OSD) is associated with social stigma including problems in finding a marriage partner. Previous studies have also implied positive effects of ivermectin treatment on OSD. Therefore a multi-country trial of ivermectin is underway to test the hypothesis that ivermectin treatment might affect perceptions of stigma associated with OSD. This paper presents the baseline stigma findings from the study site located in southwestern Nigeria. A total of 1032 persons living in villages near the Ofiki and Oyan Rivers were screened and interviewed and 500 (48%) were found to have an onchocercal skin lesion. A 13-item, 39-point stigma scale was used in interviews with affected persons. A mean score of 16.8 was obtained. No personal characteristics or disease factors were found to be associated with stigma score. The highest ranking items focused on issues of self-esteem such as feeling embarrassed, feelings of being pitied, thinking less of oneself, feeling that scratching annoys others, feeling that others thought less of the person and feeling that others had avoided the person. During the interviews it was discovered that only about half of those clinically diagnosed as having OSD labeled their own condition as onchocerciasis. Those who said their lesion was OSD had a lower stigma score than those who did not, conforming with previous studies wherein affected persons perceived less stigma from OSD than those without the disease. A broader community perspective on OSD was obtained through 50 interviews using paired comparisons of five skin-related local illnesses. Onchocerciasis placed midway in aversive responses between the higher end represented by leprosy and chicken pox and lower scoring papular rashes known locally as eela and ring worm. In-depth village based interviews yielded several case studies of how onchocerciasis had a negative social impact on its victims. While study on the cultural perceptions of OSD is recommended, the results indicate that with a fairly high prevalence of OSD, the community level effects of social stigma should be regarded as serious.
皮肤病一直是社会耻辱感的主要来源，无论其是否具有传染性。与盘尾丝虫病相关的皮肤病潜在的污名化影响目前正受到关注，因为非洲1700万盘尾丝虫病患者中有一半生活在该疾病非致盲形式流行的地区。有一些报告表明，盘尾丝虫性皮肤病（OSD）与社会耻辱感有关，包括在寻找婚姻伴侣方面存在问题。先前的研究也暗示了伊维菌素治疗对OSD有积极作用。因此，一项关于伊维菌素的多国试验正在进行，以检验伊维菌素治疗可能会影响与OSD相关的耻辱感认知这一假设。本文介绍了位于尼日利亚西南部研究地点的耻辱感基线调查结果。对居住在奥菲基河和奥扬河附近村庄的1032人进行了筛查和访谈，发现500人（48%）有盘尾丝虫性皮肤病变。在对受影响者的访谈中使用了一个包含13个项目、39分的耻辱感量表。获得的平均分为16.8分。未发现个人特征或疾病因素与耻辱感得分相关。排名最高的项目集中在自尊问题上，如感到尴尬、被怜悯的感觉、自我贬低、觉得抓挠会惹恼他人、觉得别人看不起自己以及觉得别人避开自己。在访谈中发现，临床诊断为患有OSD的人中只有约一半将自己的病情标记为盘尾丝虫病。那些说自己的病变是OSD的人的耻辱感得分低于那些不这样认为的人，这与先前的研究一致，即在受影响者中，OSD带来的耻辱感比未患病者所感知到的要少。通过对五种与皮肤相关的当地疾病进行配对比较的50次访谈，获得了关于OSD更广泛的社区观点。盘尾丝虫病在厌恶反应中处于中间位置，一端是以麻风病和水痘为代表的较高端，另一端是当地得分较低的丘疹性皮疹，即“伊拉”和癣。基于村庄的深入访谈产生了几个关于盘尾丝虫病如何对其受害者产生负面社会影响的案例研究。虽然建议对OSD的文化认知进行研究，但结果表明，由于OSD的患病率相当高，社会耻辱感对社区层面的影响应被视为严重。
