The Cultural Validation of Two Scales to Assess Social Stigma in Leprosy

Background: Stigma plays in an important role in the lives of persons affected by neglected tropical diseases, and assessment of stigma is important to document this. The aim of this study is to test the cross-cultural validity of the Community Stigma Scale (EMIC-CSS) and the Social Distance Scale (SDS) in the field of leprosy in Cirebon District, Indonesia. Methodology/principle findings: Cultural equivalence was tested by assessing the conceptual, item, semantic, operational and measurement equivalence of these instruments. A qualitative exploratory study was conducted to increase our understanding of the concept of stigma in Cirebon District. A process of translation, discussions, trainings and a pilot study followed. A sample of 259 community members was selected through convenience sampling and 67 repeated measures were obtained to assess the psychometric measurement properties. The aspects and items in the SDS and EMIC-CSS seem equally relevant and important in the target culture. The response scales were adapted to ensure that meaning is transferred accurately and no changes to the scale format (e.g. lay out, statements or questions) of both scales were made. A positive correlation was found between the EMIC-CSS and the SDS total scores (r = 0.41). Cronbach's alphas of 0.83 and 0.87 were found for the EMIC-CSS and SDS. The exploratory factor analysis indicated for both scales an adequate fit as unidimensional scale. A standard error of measurement of 2.38 was found in the EMIC-CSS and of 1.78 in the SDS. The test-retest reliability coefficient was respectively, 0.84 and 0.75. No floor or ceiling effects were found. Conclusions/significance: According to current international standards, our findings indicate that the EMIC-CSS and the SDS have adequate cultural validity to assess social stigma in leprosy in the Bahasa Indonesia-speaking population of Cirebon District. We believe the scales can be further improved, for instance, by adding, changing and rephrasing certain items. Finally, we provide suggestions for use with other neglected tropical diseases. Author Summary: Persons affected by neglected tropical diseases, such as, Buruli ulcer, lymphatic filariasis, onchocerciasis, leishmaniasis and leprosy, can experience stigma. One important source of stigma are members in the community. Neighbours, religious leaders, and community leaders can exclude, reject, blame or devalue a person affected by one of these diseases. It is important to be able to assess this type of stigma for the prevention and management of these diseases. Assessing stigma is not an easy task. There are several instruments available, but these were developed with different aims or tested in different settings. We can use these instruments, but we need to be sure that they assess what we want them to assess and whether the instrument produces consistent results. In this paper the authors report a study that investigated the validity of two scales that assess stigma in the community towards people affected by leprosy in Indonesia. The names of the scales are Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS) and Social Distance Scale (SDS). The results show the two scales to be adequately valid and reliable in the target culture. There are, however, also several improvements possible and the authors provide suggestions how to incorporate these. In addition, the authors provide recommendations for the use of these scales among people affected by other neglected tropical diseases.