Measuring stigma related to people with albinism in Tanzania: a cultural validation study of the EMIC-CSS and SDS among adults

Purpose: People with albinism in Tanzania are severely stigmatised. A measurement tool to assess this stigmatisation among adults is lacking. This research aimed at the cultural validation of two Scales to measure stigma related to albinism: The Albinism Social Distance Scale (A-SDS) and the Albinism Explanatory Model Interview Catalogue Community Stigma Scale (A-EMIC-CSS). Method: Conceptual, item, semantic and operational equivalences were evaluated through focus groups and interviews. A pilot study among adults attending religious institutes, as a representation of Tanzanian society, was conducted to assess the measurement equivalence. There were 101 respondents for the test and 79 respondents for the re-test. Results: Conceptual, item, semantic and operational equivalences of the Scales are sufficient. In terms of measurement equivalence, the internal consistency of the A-SDS and A-EMIC-CSS are adequate. However, social desirability should be taken into account when interpreting the findings. Conclusion and Implications: The insights provided by this article can aid in the development of tools to measure stigma cross-culturally and across stigmatising conditions. The combination of the two Scales for short and long-term effect measurement is recommended.