Measuring Stigma related to People with Albinism in Tanzania: A Cultural Validation Study of the EMIC-CSS and SDS among Adults

Tjitske de Groot , Wolfgang Jacquet , Pieter Meurs , Ruth Peters
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DOI: https://doi.org/10.5463/dcid.v31i1.961
Submitted: 2020-09-15 14:27:29
Published: 2020-08-06

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.

Keywords

Health-related stigma EMIC-CSS SDS albinism Tanzania

Authors

Tjitske de Groot

Tjitske de Groot is completing her PhD research in Educational Sciences from the Vrij Universiteit Brussels with focus on development and assessment of stigma reduction interventions related to albinism in Tanzania. Her research interests are health-related stigma, stigma reduction intervention, disability and education.  

Wolfgang Jacquet

Prof. Dr. Wolfgang Jacquet is qualitative and quantitative methodological expert, applied mathematician – biostatistician at the Vrije Universiteit Brussel. His major scientific interest is the development of assessment and measurement systems both from a practical and a theoretical point of view.

Pieter Meurs

Prof. Dr. Pieter Meurs is associated with the Education Sciences Department of the Vrije Universiteit Brussel. His research interests are philosophy of globalisation and alter globalisation, cosmopolitanism, contemporary continental philosophy (Jean-Luc Nancy), hermeneutics and humanism.

Ruth Peters

Dr. Ruth Peters is an Assistant Professor at Vrije Universiteit Amsterdam.  She defended her PhD thesis on stigma reduction in leprosy in 2015. Her research interests are health-related stigma, disability and inclusion.

How to Cite

Tjitske de Groot, Wolfgang Jacquet, Pieter Meurs, Ruth Peters (2020-08-06). Measuring Stigma related to People with Albinism in Tanzania: A Cultural Validation Study of the EMIC-CSS and SDS among Adults. Disability, CBR & Inclusive Development, Vol. 31 No. 1 (2020): Spring 2020, 7-29. https://doi.org/10.5463/dcid.v31i1.961

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