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


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.


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

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Adewuya A, Makanjuola RO (2005). Social distance towards people with mental illness amongst Nigerian university students. Social Psychiatry and Psychiatric Epidemiology; (40): 865-868. PMid:16234984

Affram AA, Teye-Kwadjo E, Gyasi-Gyamerah AA (2019). Influence of social stigma on subjective wellbeing of persons with albinism in Ghana. Journal of Community & Applied Social Psychology; 1-13.

Baker C, Lund P, Nyathi R, Taylor J (2010). The myths surrounding people with albinism in South Africa and Zimbabwe. Journal of African Cultural Studies; 22(2): 169-181.

Beretvas NS, Meyers JL, Leite WL (2002). A reliability generalization study of the Marlowe-Crowne social desirability scale. Educational and Psychological Measurement; 62(4): 570-589.

Braathen SH, Ingstad B (2006). Albinism in Malawi: Knowledge and beliefs from an African setting. Disability & Society; 21(6): 599-611.

Brieger WR, Oshiname FO, Ososanya OO (1998). Stigma associated with onchocercal skin disease among those affected near the Ofiki and Oyan Rivers in western Nigeria. Social Science & Medicine; 47(7): 841-852.

Brocco G (2015). Labeling albinism: Language and discourse surrounding people with albinism in Tanzania. Disability & Society; 30(1): 1143-1157.

Brocco G (2016). Albinism stigma, subjectivity and global-local discourses in Tanzania. Anthropology & Medicine; 23(3): 229-243 PMid:27354179 PMCid:PMC5351792

Brown SA (2008). Factors and measurement of mental illness stigma: Psychometric examination of the Attribution Questionnaire. Psychiatric Rehabilitation Journal; 32(2): 89-94. PMid:18840562

Bryceson DF, Jønsson JB, Sherrington R (2010). Miners' magic: artisanal mining, the albino fetish and murder in Tanzania. The Journal of Modern African Studies; 48(3): 353-382.

Bureau of Democracy, Human Rights, and Labour (2017). International Religious Freedom Report: Tanzania. US Department of State. Retrieved from:

Burke J, Kaijage TJ, John-Langba J (2014). Media analysis of albino killings in Tanzania: A social work and human rights perspective. Ethics and Social Welfare; 8(2): 117-134.

Corrigan PW, Rowan D, Green A, Lundin R, River P, Uphoff-Wasowski K, White K, Kubiak M (2002). Challenging two mental illness stigmas: Personal responsibility and dangerousness. Schizophrenia Bulletin; 28(2): 293-309. PMid:12693435

Cross HA, Heijnders M, Dalal A, Sermrittirong S, Mak S (2011). Interventions for stigma reduction - part 1: Theoretical considerations. Disability, CBR and Inclusive Development; 22(3): 62-70.

Crowne DP, Marlowe D (1960). A new scale of social desirability independent of psychopathology. Journal of Consulting Psychology; 24(4): 349-354. PMid:13813058

Cruz-Inigo AE, Ladizinski B, Sethi A (2011). Albinism in Africa; Stigma, slaughter and awareness campaigns. Dermatologic Clinics; 29(1): 79-87. PMid:21095532

de Groot T, Peters R, van Brakel W, Meurs P, Jacquet W (2020). The cultural validation of two scales assessing albinism-related social stigma among high school students in Tanzania. Disability, CBR & Inclusive Development; 30(4):11-38.

Grønskov K, Ek J, Brondum-Nielsen K (2007). Oculocutaneous albinism. Orphanet Journal of Rare Diseases; 43(2). PMid:17980020 PMCid:PMC2211462

Gwet KL (2008). Computing interrater reliability and its variance in the presence of high agreement. British Journal of Mathematical and Statistical Psychology; 61(1): 29-48. PMid:18482474

Hazzard A (1983). Children's experience with, knowledge of and attitude towards disabled persons. The Journal of Special Education; 17(2): 131-139.

Heijnders M, van der Meij S (2006). The fight against stigma: An overview of stigma-reduction strategies and interventions. Psychology, Health & Medicine; 11(3): 353-363. PMid:17130071

Herdman M, Fox-Rushby J, Badia X (1997). "Equivalence" and the translation and adaptation of health-related quality of life questionnaires. Quality of Life Research; 6(3): 237-247.

Herdman M, Fox-Rushby J, Badia X (1998). A model of equivalence in the cultural adaption of HRQoL instruments. Quality of life research; 7(4): 323-335. PMid:9610216

Hong ES, Zeeb H, Repacholi MH (2006). Albinism in Africa as a public health issue. BMC Public Health; 6(2): 212. PMid:16916463 PMCid:PMC1584235

Leiker JJ, Taub DE, Gast J (1995). The stigma of AIDS: Persons with AIDS and social distance. Deviant Behavior; 16(4): 333-351.

Link BG, Cullen FT, Frank J, Wozniak JF (1987). The social rejection of rormer mental patients: Understanding why labels matter. The American Journal of Sociology; 92(6): 1461-1500.

Link BG, Phelan JC (2001). Conceptualizing stigma. Annual Review of Sociology; 27: 363-385.

Parrillo VN, Donoghue C(2005). Updating the Bogardus social distance studies: A new national survey. The Social Science Journal; 42(2): 257-271.

Perry SP, Murphy MC, Dovidio JF (2015). Modern prejudice: Subtle, but unconscious? The role of bias awareness in Whites' perceptions of personal and others' biases. Journal of Experimental Social Psychology; (61): 64-78.

Peters RM, Dadun, van Brakel WH, Zweekhorst MB, Damayanti R, Bunders JF, Irwanto (2014). The cultural validation of two scales to assess social stigma in leprosy. PLoS Neglected Tropical Diseases; 8(11): e3274.

PMid:25376007 PMCid:PMC4222778

Sakuragi T (2008). Attitudes toward language study and cross-cultural attitudes in Japan. International Journal of Intercultural Relations; 32(1): 81-90.

Sheng Y, Sheng Z (2012). Is coefficient alpha robust to non-normal data? Frontiers in Psychology; 3(34).

PMid:22363306 PMCid:PMC3279724

Sigelman CK (1991). Social distance from stigmatized groups: False consensus and false uniqueness effects on responding. Rehabilitation Psychology; 36(3): 139-151.

Stevelink SA, van Brakel WH (2013). The cross-cultural equivalence of participation instruments: A systematic review. Disability and Rehabilitation; 35(15): 1256-1268. PMid:23789790

Stienstra Y, van der Graaf WTA, Asamoa K, van der Werf TS (2002). Beliefs and attitudes toward buruli ulcer in Ghana. The American Journal of Tropical Medicine and Hygiene; 67(2): 207-213. PMid:12389949

Stier A, Hinshaw SP (2007). Explicit and implicit stigma against individuals with mental illness. Australian Psychologist; 42(2): 106-117.

Terwee CB, Bot SD, de Boer MR, van der Windt DA, Knol DL, Dekker J, de Vet HC (2007). Quality criteria were proposed for measurement properties of health status queestionnaires. Journal of Clinical Epideiology; 60(1): 34-42. PMid:17161752

Uromi S (2014). Violence against persons with albinism and older women: Tackling witchcraft accusations in Tanzania. International Journal of Education and Research; 2(6): 323-338.

Van Brakel WH, Sihombing B, Djarir H, Beise K, Kusumawardhani L, Yulihane R, Wilder-Smith A (2012). Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination. Global Health Action; 5: 183-164. PMid:22826694 PMCid:PMC3402069

Van Brakel WH, Cataldo J, Grover S, Kohrt BA, Nyblade L, Stockton M, Wouters E, Yang LH (2019). Out of the silos: Identifying cross-cutting features of health-related stigma to advance measurement and intervention. BMC Medicine; 17(13). PMid:30764817 PMCid:PMC6376667

Weiss M (1997). Explanatory Model Interview Catalogue (EMIC): Framework for comparative study of illness. Transcultural Psychiatry; 34(2): 235-263.

Wongpakaran N, Wongpakaran T, Wedding D, Gwet KL (2013). A comparison of Cohen's Kappa and Gwet's AC1 when calculating interrater reliability coefficients: a study conducted with personality disorder samples. BMC Medical Research Methodology; 13(61): 61. PMid:23627889 PMCid:PMC3643869


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