Cultural adaption and validation of the Explanatory Model Interview Catalogue–Community Stigma Scale in the assessment of public stigma related to schistosomiasis in lakeshore areas of Mwanza region, Tanzania

BACKGROUND: Previous qualitative studies on attitudes towards schistosomiasis demonstrated inconclusive results on the extent of stigma towards schistosomiasis in endemic communities around the world. The Explanatory Model Interview Catalogue–Community Stigma Scale (EMIC-CSS) has been used and validated for the assessment of public stigma across numerous countries in various health conditions. This study tested the performance of the scale in the context of stigma related to schistosomiasis in twelve communities in the three districts of Magu, Nyamagana and Ilemela in Mwanza region, Tanzania. METHODOLOGY/PRINCIPAL FINDINGS: The 15-item-version of the EMC-CSS was first translated to Kiswahili language. The translation was discussed within the research team to retain the meaning of the items and implement cultural adaptations. Validation of the adapted EMIC-CSS scale was conducted following the framework of Herdman and Fox- Rushby. A pilot study with 41 participants from two communities provided the basis for testing the performance of each item and assessing the semantic and operational equivalence of the scales. In addition, eight qualitative focus group discussions (FGDs) were conducted to evaluate the conceptional equivalence of the EMIC-CSS. Finally, the performance of the adjusted scale was tested on 200 participants with a 50:50 male-female ratio from ten communities. The mean score of the EMIC-CSS M = 8.35 (SD = 6.63) shows clear indications for public stigma towards schistosomiasis. The EMIC-CSS demonstrated a good internal consistency with Cronbach’s alpha α = .857 and no floor and ceiling effects. CONCLUSION/SIGNIFICANCE: The results demonstrate that the EMIC-CSS is a useful instrument in assessing public stigma towards schistosomiasis and allow a clear recommendation of the EMIC-CSS for schistosomiasis in the Tanzanian culture. However, future studies are additionally recommended to address specific aspects and forms of the disease and how they contribute to the development of stigma towards schistosomiasis.