Cross-cultural adaptation of the 5-Question Stigma Indicators in trachoma-affected communities, Ethiopia

Stigma is common in people affected with Neglected Tropical Diseases (NTDs). However, no validated tools are available to assess and monitor stigma in trachoma-affected communities. We tested the cross-cultural equivalence of the 5-question stigma indicator-affected persons (5-QSI-AP) scale in persons with trachomatous trichiasis (TT), the blinding stage of trachoma, and the 5-question stigma indicator-community stigma (5-QSI-CS) scale in person without TT, in Amhara region, Ethiopia. Conceptual, item, semantic, and operational equivalence were assessed through exploratory qualitative methods; measurement equivalence was assessed quantitatively through internal consistency, construct validity, and reproducibility. A total of 390 people participated: 181 were persons with TT, 182 persons without TT, 19 mental health, trachoma, social science, and linguistics experts, and eight interviewers. Items included in both scales were adequately relevant and important to explore stigma in the target culture. Concern about others knowing that they have TT, shame, avoidance by others, and problems getting married or in their marriage were among the issues persons with TT faced in this study community. The 5-QSI-AP had a Cronbach’s α of 0.57 for internal consistency and showed adequate discriminant validity where persons with central corneal opacity from TT had higher mean stigma scores than their counterparts. The 5-QSI-CS had a Cronbach’s α of 0.70 for internal consistency and a correlation of r = 0.23 with the Social Distance Scale (SDS) for convergent validity. The test-retest reliability analysis between the initial and repeat measures produced an intraclass correlation coefficient of 0.60 and 0.53 for the 5-QSI-AP and 5-QSI-CS respectively, and no evidence of systematic bias in mean stigma scores. The 5-QSI scales have satisfactory cultural validity to assess and monitor stigma in this trachoma-affected Amharic-speaking study population. With further cross-cultural validation, these brief and easy to administer scales would offer the possibility to rapidly measure and monitor stigma associated with NTDs.