Stigma associated with onchocercal skin disease among those affected near the Ofiki and Oyan rivers in Western Nigeria

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.