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

doi:10.5463/dcid.v30i4.861

Tjitske de Groot ⁽¹⁾, Ruth Peters ⁽²⁾, Wim van Brakel ⁽³⁾, Pieter Meurs ⁽⁴⁾, Wolfgang Jacquet ⁽⁵⁾

(1) Department of Educational Sciences, Vrĳ e Universiteit Brussel, Belgium,

(2) Athena Institute, Vrĳe Universiteit Amsterdam, Netherlands,

(3) NLR – until No Leprosy Remains, Netherlands,

(4) Department of Educational Sciences, Vrĳe Universiteit Brussel, Belgium,

(5) Department of Educational Sciences, Vrĳe Universiteit Brussel, Belgium

https://doi.org/10.5463/dcid.v30i4.861

Issue
Vol. 30 No. 4 (2019): Winter 2019

Submitted
September 14, 2020

Published
May 15, 2020

Keywords:

Health-related stigma, EMIC-CSS, ASDS-A

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Abstract

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.

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Authors

Tjitske de Groot

Department of Educational Sciences, Vrĳ e Universiteit Brussel

groot.de.tjitske@gmail.com (Primary Contact)

Ruth Peters

Athena Institute, Vrĳe Universiteit Amsterdam

Wim van Brakel

NLR – until No Leprosy Remains

Pieter Meurs

Department of Educational Sciences, Vrĳe Universiteit Brussel

Wolfgang Jacquet

Department of Educational Sciences, Vrĳe Universiteit Brussel

Author Biographies

Tjitske de Groot, Department of Educational Sciences, Vrĳ e Universiteit Brussel

Tjitske de Groot completed a BSc degree in Cultural Anthropology and Development Sociology at the University of Amsterdam and holds a MSc degree in Educational Sciences from the Vrije Universiteit Brussel. In her PhD research, she focuses on the development and assessment of stigma reduction interventions related to Albinism in Tanzania.

Ruth Peters, Athena Institute, Vrĳe Universiteit Amsterdam

Ruth Peters holds a BSc degree in Physiotherapy from Hogeschool Arnhem and Nijmegen, a MSc in Public Health Research from VU University Amsterdam and an MA in Development Studies from the Institute of Development Studies, Sussex University, Brighton. She defended her PhD thesis on stigma reduction in leprosy in 2015. Her research interests are mixed methods, transdisciplinary research, participatory research, health-related stigma and disability.

Wim van Brakel, NLR – until No Leprosy Remains

Wim van Brakel holds a medical degree from Amsterdam University, an MSc in Epidemiology from the London School of Hygiene & Tropical Medicine and a PhD in neuro-epidemiology from Utrecht University. Dr. van Brakel has worked for 17 years in Nepal and India for international NGOs, specializing in leprosy control, public health, prevention of disabilities, rehabilitation and research. He worked at the Royal Tropic Institute (KIT), Amsterdam, as Senior Adviser Public Health from 2003 to February 2014. He now works as Senior Technical Consultant for Netherlands Leprosy Relief and as researcher for Disability Studies in Nederland at the VU University Medical Centre, Amsterdam. His research interests include epidemiology of leprosy, peripheral neuropathy in leprosy, disability and rehabilitation, social participation, stigma and clinimetrics. He has published over 80 papers and chapters in international journals and books.

Pieter Meurs, Department of Educational Sciences, Vrĳe Universiteit Brussel

Pieter Meurs holds a Master Degree in Social Agogical Sciences and in Philosophy from the Vrije Universiteit Brussel. His research interests are philosophy of globalisation and alterglobalisation, cosmopolitanism, contemporary continental philosophy (Jean-Luc Nancy), hermeneutics and humanism.

Wolfgang Jacquet, Department of Educational Sciences, Vrĳe Universiteit Brussel

Prof. Dr. Wolfgang Jacquet is an applied mathematician and bio-statistician at the Vrije Universiteit Brussel. His major scientific interests are the application of statistics and the development of measurements systems both from a practical and a theoretical point of view.

1.

de Groot T, Peters R, van Brakel W, Meurs P, Jacquet W. The Cultural Validation of Two Scales assessing Albinism - related Social Stigma among High School Students in Tanzania. DCIDJ [Internet]. 2020 May 15 [cited 2025 Feb. 23];30(4):11-38. Available from: https://dcidj.uog.edu.et/index.php/up-j-dcbrid/article/view/337

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