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4 - Measurement of Mental Illness Stigma and Discrimination

from Part I - Understanding Stigma and Mental Health

Published online by Cambridge University Press:  28 July 2022

By
Elaine Brohan ,
Maria Milenova ,
Ioannis Bakolis ,
Sara Evans-Lacko ,
Brandon A. Kohrt  and
Graham Thornicroft
Edited by
David L. Vogel  and
Nathaniel G. Wade
David L. Vogel
Affiliation:
Iowa State University
Nathaniel G. Wade
Affiliation:
Iowa State University
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Summary

Research on the measurement of mental illness stigma and discrimination has grown rapidly in the past 15 years with a large number of measures developed. This chapter first defines mental illness stigma and discrimination and highlights the importance of using an appropriately targeted measurement strategy including consideration of key measurement principles such as content validity, context of use, and psychometric properties. Nine commonly used measures of perceived, experienced, and self -stigma and discrimination are then highlighted with measurement considerations summarized. We also discuss global and local measurement issues including translation and cross-cultural adaptation. Future directions for stigma and discrimination measurement research in mental illness stigma and discrimination are presented including the need to ensure that research includes consideration of complexity and variation in the experience of stigma and discrimination and that research is focused proportionately on communities that experience the most mental illness stigma and discrimination.

Keywords

measurementdiscriminationmental illness stigmaperceived stigmaexperienced stigmaself-stigma
Type
Chapter
Information
The Cambridge Handbook of Stigma and Mental Health , pp. 52 - 70
Publisher: Cambridge University Press
Print publication year: 2022

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References

Angermeyer, M. C., Schulze, B., & Dietrich, S. (2003). Courtesy stigma. Social psychiatry and psychiatric epidemiology, 38(10), 593–602.Google Scholar
Bakolis, I., Thornicroft, G., Vitoratou, S., et al. (2019). Development and validation of the DISCUS scale: A reliable short measure for assessing experienced discrimination in people with mental health problems on a global level. Schizophrenia research, 212, 213–220.CrossRefGoogle Scholar
Boyd, J. E., Adler, E. P., Otilingam, P. G., & Peters, T. (2014). Internalized Stigma of Mental Illness (ISMI) scale: A multinational review. Comprehensive Psychiatry, 55(1), 221–231.Google Scholar
Boyd, J. E., Otilingam, P. G., & DeForge, B. R. (2014). Brief version of the Internalized Stigma of Mental Illness (ISMI) scale: Psychometric properties and relationship to depression, self esteem, recovery orientation, empowerment, and perceived devaluation and discrimination. Psychiatric Rehabilitation Journal, 37(1), 17.Google Scholar
Brohan, E., & Chan, E. K. (2019). PMU127 Illness-related stigma: Conceptual and measurement considerations for patient-centered assessment in interventional contexts. Value in Health, 22, S730.Google Scholar
Brohan, E., Clement, S., Rose, D., Sartorius, N., Slade, M., & Thornicroft, G. (2013). Development and psychometric evaluation of the Discrimination and Stigma Scale (DISC). Psychiatry research, 208(1), 33–40.Google Scholar
Brohan, E., Slade, M., Clement, S., & Thornicroft, G. (2010). Experiences of mental illness stigma, prejudice and discrimination: A review of measures. BMC Health Services Research, 10(1), 80.Google Scholar
Brouwers, E., Mathijssen, J., Van Bortel, T., et al. (2016). Discrimination in the workplace, reported by people with major depressive disorder: A cross-sectional study in 35 countries. BMJ open, 6(2), e009961.Google Scholar
Cappelleri, J. C., Zou, K. H., Bushmakin, A. G., et al. (2013). Patient-Reported Outcomes: Measurement, Implementation and Interpretation. CRC Press.CrossRefGoogle Scholar
Cardoso, N. D. O., Vieira, B. S., Ferracini, I. D. M. V., & de Lima Argimon, I. I. (2020). Instruments for measuring perceived and experienced Mental Illness Stigma: A systematic review. Revista Psicologia-Teoria e Prática, 22(1), 62–88.Google Scholar
Chang, C.-C., Wu, T.-H., Chen, C.-Y., Wang, J.-D., & Lin, C.-Y. (2014). Psychometric evaluation of the internalized stigma of mental illness scale for patients with mental illnesses: Measurement invariance across time. PLoS ONE, 9(6), e98767.CrossRefGoogle ScholarPubMed
Corrigan, P. W. (1998). The impact of stigma on severe mental illness. Cognitive and Behavioral Practice, 5(2), 201–222.CrossRefGoogle Scholar
Corrigan, P. W., Michaels, P. J., Vega, E., Gause, M., Watson, A. C., & Rüsch, N. (2012). Self-stigma of mental illness scale–short form: Reliability and validity. Psychiatry Research, 199(1), 65–69.CrossRefGoogle ScholarPubMed
Corrigan, P. W., Morris, S. B., Michaels, P. J., Rafacz, J. D., & Rüsch, N. (2012). Challenging the public stigma of mental illness: A meta-analysis of outcome studies. Psychiatric Services, 63(10), 963–973.CrossRefGoogle ScholarPubMed
Corrigan, P. W., Watson, A. C., & Barr, L. (2006). The self–stigma of mental illness: Implications for self–esteem and self–efficacy. Journal of Social and Clinical Psychology, 25(8), 875–884.Google Scholar
De Vet, H. C., Terwee, C. B., Mokkink, L. B., & Knol, D. L. (2011). Measurement in Medicine: A Practical Guide. Cambridge University Press.Google Scholar
Drew, N., Funk, M., Tang, S., et al. (2011). Human rights violations of people with mental and psychosocial disabilities: An unresolved global crisis. The Lancet, 378(9803), 1664–1675.Google Scholar
Eghaneyan, B. H., & Murphy, E. R. (2020). Measuring mental illness stigma among Hispanics: A systematic review. Stigma and Health, 5(3), 351–363.Google Scholar
Evans-Lacko, S., Brohan, E., Mojtabai, R., & Thornicroft, G. (2012). Association between public views of mental illness and self-stigma among individuals with mental illness in 14 European countries. Psychological Medicine, 42(8), 1741–1752.Google Scholar
Eylem, O., de Wit, L., van Straten, A., et al. (2020). Stigma for common mental disorders in racial minorities and majorities a systematic review and meta-analysis. BMC Public Health, 20(1), 1–20.Google ScholarPubMed
Fayers, P. M., & Machin, D. (2013). Quality of Life: The Assessment, Analysis and Interpretation of Patient-Reported Outcomes. John Wiley & Sons.Google Scholar
Food and Drug Administration. (2009). Guidance for Industry. Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims (www.fda.gov/regulatory-information/search-fda-guidance-documents/patient-reported-outcome-measures-use-medical-product-development-support-labeling-claims).Google Scholar
Fox, A. B., Earnshaw, V. A., Taverna, E. C., & Vogt, D. (2018). Conceptualizing and measuring mental illness stigma: The mental illness stigma framework and critical review of measures. Stigma and Health, 3(4), 348.Google Scholar
Gaebel, W., Rössler, W., & Sartorius, N. (2017). Conclusion and recommendations for future action. In Gaebel, W., Rössler, W., & Sartorius, N. (Eds.), The Stigma of Mental Illness – End of the Story? (pp. 641–650). Springer International Publishing.Google Scholar
Hatzenbuehler, M. L., Phelan, J. C., & Link, B. G. (2013). Stigma as a fundamental cause of population health inequalities. American Journal of Public Health, 103(5), 813–821.CrossRefGoogle ScholarPubMed
Jackson-Best, F., & Edwards, N. (2018). Stigma and intersectionality: A systematic review of systematic reviews across HIV/AIDS, mental illness, and physical disability. BMC Public Health, 18(1), 919.CrossRefGoogle ScholarPubMed
Jaeschke, R., Singer, J., & Guyatt, G. H. (1989). Measurement of health status: Ascertaining the minimal clinically important difference. Controlled clinical trials, 10(4), 407–415.Google Scholar
Jeffery, D., Clement, S., Corker, E., et al. (2013). Discrimination in relation to parenthood reported by community psychiatric service users in the UK: A framework analysis. BMC Psychiatry, 13(1), 120.Google Scholar
Kane, J. C., Elafros, M. A., Murray, S. M., et al. (2019). A scoping review of health-related stigma outcomes for high-burden diseases in low-and middle-income countries. BMC Medicine, 17(1), 17.Google Scholar
Kanter, J. W., Rusch, L. C., & Brondino, M. J. (2008). Depression self-stigma: A new measure and preliminary findings. The Journal of Nervous and Mental Disease, 196(9), 663–670.CrossRefGoogle ScholarPubMed
King, M., Dinos, S., Shaw, J., et al. (2007). The Stigma Scale: Development of a standardised measure of the stigma of mental illness. The British Journal of Psychiatry, 190(3), 248–254.Google Scholar
Kleinman, A. (1999). Experience and its moral modes: Culture, human conditions, and disorder. Tanner Lectures on Human Values, 20, 355–420.Google Scholar
Knudsen, H. C., Vázquez-Barquero, J. L., Welcher, B., et al. (2000). Translation and cross-cultural adaptation of outcome measurements for schizophrenia: EPSILON Study 2. The British Journal of Psychiatry, 177(S39), s8–s14.Google Scholar
Kohrt, B. A., & Harper, I. (2008). Navigating diagnoses: Understanding mind–body relations, mental health, and stigma in Nepal. Culture, Medicine, and Psychiatry, 32(4), 462.Google Scholar
Koschorke, M., Evans-Lacko, S., Sartorius, N., & Thornicroft, G. (2017). Stigma in different cultures. In The Stigma of Mental Illness – End of the Story? (pp. 67–82). Springer.Google Scholar
Lauber, C., & Rössler, W. (2007). Stigma towards people with mental illness in developing countries in Asia. International Review of Psychiatry, 19(2), 157–178.Google Scholar
Link, B. G. (1987). Understanding labeling effects in the area of mental disorders: An assessment of the effects of expectations of rejection. American Sociological Review, 52, 96–112.Google Scholar
Link, B. G., Struening, E. L., Neese-Todd, S., Asmussen, S., & Phelan, J. C. (2001). Stigma as a barrier to recovery: The consequences of stigma for the self-esteem of people with mental illnesses. Psychiatric Services, 52(12), 1621–1626.Google Scholar
Mak, W. W., & Cheung, R. Y. (2010). Self-stigma among concealable minorities in Hong Kong: Conceptualization and unified measurement. American Journal of Orthopsychiatry, 80(2), 267.Google Scholar
Mokkink, L. B., De Vet, H. C., Prinsen, C. A., et al. (2018). COSMIN risk of bias checklist for systematic reviews of patient-reported outcome measures. Quality of Life Research, 27(5), 1171–1179.Google Scholar
Morrison, T. G., Bishop, C., Morrison, M. A., & Parker-Taneo, K. (2016). A psychometric review of measures assessing discrimination against sexual minorities. Journal of Homosexuality, 63(8), 1086–1126.Google Scholar
Murray, C. J., Vos, T., Lozano, R., et al. (2012). Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990–2010: A systematic analysis for the Global Burden of Disease Study 2010. The Lancet, 380(9859), 2197–2223.Google Scholar
O’Connor, L. K., Yanos, P. T., & Firmin, R. L. (2018). Correlates and moderators of stigma resistance among people with severe mental illness. Psychiatry Research, 270, 198–204.Google Scholar
Oexle, N., & Corrigan, P. W. (2018). Understanding mental illness stigma toward persons with multiple stigmatized conditions: Implications of intersectionality theory. Psychiatric Services, 69(5), 587–589.Google Scholar
Patrick, D. L., Burke, L. B., Powers, J. H., et al. (2007). Patient-reported outcomes to support medical product labeling claims: FDA perspective. Value in Health, 10, S125–S137.Google Scholar
Pescosolido, B. A., & Martin, J. K. (2015). The stigma complex. Annual review of sociology, 41, 87–116.Google Scholar
Pescosolido, B. A., Martin, J. K., Lang, A., & Olafsdottir, S. (2008). Rethinking theoretical approaches to stigma: A framework integrating normative influences on stigma (FINIS). Social Science & Medicine, 67(3), 431–440.Google Scholar
Prinsen, C. A., Mokkink, L. B., Bouter, L. M., et al. (2018). COSMIN guideline for systematic reviews of patient-reported outcome measures. Quality of Life Research, 27(5), 1147–1157.Google Scholar
Quinn, D. M., Williams, M. K., & Weisz, B. M. (2015). From discrimination to internalized mental illness stigma: The mediating roles of anticipated discrimination and anticipated stigma. Psychiatric Rehabilitation Journal, 38(2), 103.CrossRefGoogle ScholarPubMed
Ritsher, J. B., Otilingam, P. G., & Grajales, M. (2003). Internalized stigma of mental illness: Psychometric properties of a new measure. Psychiatry Research, 121(1), 31–49.Google Scholar
Rusch, L. C., Kanter, J. W., Manos, R. C., & Weeks, C. E. (2008). Depression stigma in a predominantly low income African American sample with elevated depressive symptoms. The Journal of Nervous and Mental Disease, 196(12), 919–922.Google Scholar
Sayce, L. (1998). Stigma, discrimination and social exclusion: What’s in a word? Journal of Mental Health, 7(4), 331–343.Google Scholar
Sheehan, L., Nieweglowski, K., & Corrigan, P. W. (2017). Structures and types of stigma. In The Stigma of Mental Illness – End of the Story? (pp. 43–66). Springer.CrossRefGoogle Scholar
Stevelink, S. A. M., Wu, I. C., Voorend, C. G., & van Brakel, W. H. (2012). The psychometric assessment of internalized stigma instruments: A systematic review. Stigma Research and Action, 2(2), 100–118.Google Scholar
Stuart, H. (2017). What has proven effective in anti-stigma programming. In The Stigma of Mental Illness – End of the Story? (pp. 497–514). Springer.CrossRefGoogle Scholar
Stuart, H., Milev, R., & Koller, M. (2005). The Inventory of Stigmatizing Experiences: Its development and reliability. World Psychiatry, 4(Suppl 1), 35–39.Google Scholar
Terwee, C. B., Bot, S. D., de Boer, M. R., et al. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology, 60(1), 34–42.CrossRefGoogle ScholarPubMed
Thornicroft, G., Brohan, E., Rose, D., et al. (2009). Global pattern of experienced and anticipated discrimination against people with schizophrenia: A cross-sectional survey. The Lancet, 373(9661), 408–415.Google Scholar
Thornicroft, G., Chatterji, S., Evans-Lacko, S., et al. (2017). Undertreatment of people with major depressive disorder in 21 countries. The British Journal of Psychiatry, 210(2), 119–124.Google Scholar
Thornicroft, G., Rose, D., Kassam, A., & Sartorius, N. (2007). Stigma: Ignorance, prejudice or discrimination? The British Journal of Psychiatry, 190(3), 192–193.Google Scholar
Trani, J.-F., Bakhshi, P., Kuhlberg, J., et al. (2015). Mental illness, poverty and stigma in India: A case–control study. BMJ Open, 5(2), e006355. https://doi.org/10.1136/bmjopen-2014-006355.Google Scholar
Van Brakel, W. H. (2006). Measuring health-related stigma – a literature review. Psychology, Health & Medicine, 11(3), 307–334.Google Scholar
Van Brakel, W. H., Cataldo, J., Grover, S., et al. (2019). Out of the silos: Identifying cross-cutting features of health-related stigma to advance measurement and intervention. BMC Medicine, 17(1), 13.Google Scholar
Van Ommeren, M., Sharma, B., Thapa, S., et al. (1999). Preparing instruments for transcultural research: Use of the translation monitoring form with Nepali-speaking Bhutanese refugees. Transcultural Psychiatry, 36(3), 285–301.Google Scholar
Vistorte, A. O. R., Ribeiro, W. S., Jaen, D., et al. (2018). Stigmatizing attitudes of primary care professionals towards people with mental disorders: A systematic review. The International Journal of Psychiatry in Medicine, 53(4), 317–338.Google Scholar
Wahl, O. F. (1999). Mental health consumers’ experience of stigma. Schizophrenia Bulletin, 25(3), 467–478.Google Scholar
Wahlbeck, K., Westman, J., Nordentoft, M., Gissler, M., & Laursen, T. M. (2011). Outcomes of Nordic mental health systems: Life expectancy of patients with mental disorders. The British Journal of Psychiatry, 199(6), 453–-458.Google Scholar
Webber, M., Corker, E., Hamilton, S., et al. (2014). Discrimination against people with severe mental illness and their access to social capital: Findings from the Viewpoint Survey. Epidemiology and Psychiatric Sciences, 23(2), 155–165.Google Scholar
Wei, Y., McGrath, P., Hayden, J., & Kutcher, S. (2018). The quality of mental health literacy measurement tools evaluating the stigma of mental illness: A systematic review. Epidemiology and Psychiatric Sciences, 27(5), 433.CrossRefGoogle ScholarPubMed
West, K., Hewstone, M., & Lolliot, S. (2014). Intergroup contact and prejudice against people with schizophrenia. The Journal of Social Psychology, 154(3), 217–232.CrossRefGoogle ScholarPubMed
Yang, L. H., Chen, F.-p., Sia, K. J., et al. (2014). “What matters most:” A cultural mechanism moderating structural vulnerability and moral experience of mental illness stigma. Social Science & Medicine, 103, 84–93.Google Scholar
Yanos, P. T., Roe, D., Markus, K., & Lysaker, P. H. (2008). Pathways between internalized stigma and outcomes related to recovery in schizophrenia spectrum disorders. Psychiatric Services, 59(12), 1437–1442.Google Scholar

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