Translation and cross-cultural validation of four tools for assessing stigma among community members and self-esteem among persons affected by leprosy in Nigeria

Abstract

Stigma is an important challenge in the management of neglected tropical diseases (NTDs), including leprosy. Evaluating stigma among people living with leprosy and community members is important because it provides useful information for planning and evaluation of rehabilitation services. In order to undertake the participatory co-development of audio and written educational materials by persons affected by leprosy and other stakeholders for use in a cluster randomised controlled trial (cRCT) in Nigeria, two instruments were selected to evaluate stigma among persons affected by leprosy, i.e., the leprosy-adapted Internalised Stigma of Mental Illness Scale (L-ISMI) and the Rosenberg Self-Esteem Scale (RSES). Also, another two instruments were selected to assess leprosy-related stigma among community members: the Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS) and the Social Distance Scale (SDS). However, the four tools, i.e., L-ISMI, RSES, SDS and EMIC-CSS, have not been culturally validated in the local languages in Nigeria. Cross-cultural adaptation and validation of the instruments is required to meaningfully compare the findings of the cRCT across two different regions (with multiple languages) in Nigeria. This editorial is the leading introductory piece among a series of 4 subsequent papers detailing the description of the study setting and context as well as the methodology for assessing the cross-cultural validity of the four tools in two Nigerian languages.