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

Date Published: November 6, 2014

Publisher: Public Library of Science

Author(s): Ruth M. H. Peters, Wim H. Van Brakel, Marjolein B. M. Zweekhorst, Rita Damayanti, Joske F. G. Bunders, Diana N. J. Lockwood.

Abstract: BackgroundStigma 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 findingsCultural 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/significanceAccording 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.

Partial Text: Several important aspects of leprosy are highlighted in this short book. The most prominent ones are: the fear for the disease, beliefs around causation, degradation of the person affected by leprosy and exclusion by villagers. These aspects were germane at the time the book was written. The manifestations of today are different, but resemblances remain (see Peters et al for manifestations in Cirebon District, the study area [1]). Leprosy is often seen as the archetype of a stigmatised health condition [2], [3], but is certainly not the only disease in which stigma plays a role. Other Neglected Tropical Diseases (NTDs) are, for instance, Buruli ulcer, lymphatic filariasis, onchocerciasis, leishmaniasis and Chagas disease [4]–[6]. But stigma plays also a role in many other diseases, such as tuberculosis, HIV/AIDS and mental illness [7]–[10].

The assessment of stigma in NTDs may serve at least four main purposes: i) increasing our understanding of NTDs and their social impact, ii) increasing our understanding of stigma and its determinants and dynamics, iii) assessing the severity of stigma over time and iv) assessing change over time [19]. This study aimed to investigate the cultural validity of the EMIC-CSS and SDS for leprosy and took a universalist orientation by assumption that culture can have a significant impact on the understanding of stigma. The results show that the EMIC-CSS and SDS are culturally valid in the present context, but there remains room for improvement as will be shown in this discussion.



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