The Cultural Validation of Two Scales assessing Albinism - related Social Stigma among High School Students in Tanzania

Tjitske de Groot, Ruth Peters, Wim van Brakel, Pieter Meurs, Wolfgang Jacquet


Purpose: Albinism in Tanzania causes fierce stigmatisation. Although various stigma reduction interventions (SRI) are employed, research on their effectiveness is lacking. This research aimed to develop a tool to measure albinism-related social stigma among high school students in Tanzania. Cultural equivalence was tested for the Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS) and Albinism Social Distance Scale for Adolescents (ASDS-A) assessing conceptual, item, semantic, operational and measurement equivalence.

Methods: The methods used were workshops, in-depth interviews, translation and re-translation, discussions, a test (n=337) re-test (n=142) of the survey, and follow-up focus group discussions (n=25).

Results: The Scales have proven to be adequate on all equivalences other than measurement equivalence. The reproducibility statistics raise questions that can be explained by characteristics of the sample.

Conclusion and Implications: The analysis provides insights for further validation of the Scales, contributes to the discussion about a universal stigma measurement tool and demonstrates the importance of validation studies of existing and proven tools used in a different context.


Health-related stigma; stigma reduction; cultural validation; albinism; Tanzania

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