Cultural validation of a new instrument to measure leprosy-related stigma: The SARI stigma scale

Background: There is a need for comprehensive, valid and reliable instruments to assess leprosy-related stigma. This paper presents the process of the cross-cultural validation of an instrument in Cirebon District, Indonesia initiated by the Stigma Assessment and Reduction of Impact (SARI) project. Methods: The Berger Scale was initially developed to assess HIV/AIDS-related stigma. This study explores the conceptual, item, semantic, operational and measurement equivalence of this scale for leprosy. The process included a qualitative study, translation and back-translation, training of interviewers, a pilot and the main data collection. We aimed for a sample of 154 people affected by leprosy with 60 repeat interviews. They were selected through convenience sampling. Results: The original scale showed acceptable conceptual equivalence, but insufficient item, semantic and operational equivalences. For instance, there were irrelevant HIV-related items and the respondents found it difficult to indicate their level of agreement with the given statements. Major adjustments were necessary, leading to a new version of the scale. The measurement properties of the new version showed good internal consistency (Cronbach's alpha 0.88); no floor or ceiling effects; and a good reliability (intra-class correlation coefficient 0.75). Conclusion: Due to the many adjustments we decided to rename the instrument to SARI Stigma Scale. The scale is comprehensive, reliable and culturally valid to assess four aspects of stigma among persons affected by leprosy in a setting like Cirebon District. Further research will determine whether this instrument is valid in other settings, cultures and with other neglected tropical diseases.