Publication Cover
Global Public Health
An International Journal for Research, Policy and Practice
Volume 18, 2023 - Issue 1
1,018
Views
0
CrossRef citations to date
0
Altmetric
Research Article

Measuring health-related stigma: Exploring challenges and research priorities to improve assessment

ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Article: 2264960 | Received 10 Mar 2023, Accepted 21 Sep 2023, Published online: 06 Oct 2023

References

  • Bakker, L., & van Brakel, W. H. (2012). Empowerment assessment tools in people with disabilities in developing countries. A systematic literature review. Leprosy Review, 83(2), 129–153. https://doi.org/10.47276/lr.83.2.129
  • Bauer, G. R. (2014). Incorporating intersectionality theory into population health research methodology: Challenges and the potential to advance health equity. Social Science & Medicine, 110, 10–17. https://doi.org/10.1016/j.socscimed.2014.03.022
  • Berger, B. E., Ferrans, C. E., & Lashley, F. R. (2001). Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale. Research in Nursing & Health, 24(6), 518–529. https://doi.org/10.1002/nur.10011
  • Bogardus, E. S. (1933). A social distance scale. Sociology & Social Research, 17, 265–271.
  • Bowden, A., & Fox-Rushby, J. A. (2003). A systematic and critical review of the process of translation and adaptation of generic health-related quality of life measures in Africa, Asia, Eastern Europe, the Middle East, South America. Social Science & Medicine, 57(7), 1289–1306. https://doi.org/10.1016/S0277-9536(02)00503-8
  • 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. https://doi.org/10.1016/j.comppsych.2013.06.005
  • 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. https://doi.org/10.1186/1472-6963-10-80
  • Dadun, D., Peters, R. M. H., Van Brakel, W. H., Lusli, M., Damayanti, R., Bunders, J. F. G., & Irwanto, I. (2017). Cultural validation of a new instrument to measure leprosy-related stigma: The SARI stigma scale. Leprosy Review, 88(1), 23–42. https://doi.org/10.47276/lr.88.1.23
  • Dale, S. K., Pan, Y., Gardner, N., Saunders, S., Wright, I. A., Nelson, C. M., Liu, J., Phillips, A., Ironson, G. H., Rodriguez, A. E., Alcaide, M. L., Safren, S. A., & Feaster, D. J. (2021). Daily microaggressions and related distress among black women living with HIV during the onset of the COVID-19 pandemic and black lives matter protests. AIDS and Behavior. https://doi.org/10.1007/s10461-021-03321-w
  • de Groot, T., Peters, R. M. H., Van Brakel, W. H., 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. https://doi.org/10.5463/DCID.v30i4.861
  • Dulin, A. J., Dale, S. K., Earnshaw, V. A., Fava, J. L., Mugavero, M. J., Napravnik, S., Hogan, J. W., Carey, M. P., & Howe, C. J. (2018). Resilience and HIV: A review of the definition and study of resilience. AIDS Care, 30(SUP5), S6–S17. https://doi.org/10.1080/09540121.2018.1515470
  • Earnshaw, V. A., Bogart, L. M., Dovidio, J. F., & Williams, D. R. (2013). Stigma and racial/ethnic HIV disparities: Moving toward resilience. The American Psychologist, 68(4), 225–236. https://doi.org/10.1037/a0032705
  • Earnshaw, V. A., Jonathon Rendina, H., Bauer, G. R., Bonett, S., Bowleg, L., Carter, J., English, D., Friedman, M. R., Hatzenbuehler, M. L., Johnson, M. O., McCree, D. H., Neilands, T. B., Quinn, K. G., Robles, G., Scheim, A. I., Smith, J. C., Smith, L. R., Sprague, L., Taggart, T., … Kerrigan, D. L. (2022). Methods in HIV-related intersectional stigma research: Core elements and opportunities. American Journal of Public Health, 112(S4), S413–S419. https://doi.org/10.2105/AJPH.2021.306710
  • Eaton, L. A., Allen, A., Maksut, J. L., Earnshaw, V., Watson, R. J., & Kalichman, S. C. (2020). HIV microaggressions: A novel measure of stigma-related experiences among people living with HIV. Journal of Behavioral Medicine, 43(1), 34–43. https://doi.org/10.1007/s10865-019-00064-x
  • Ferguson, L., Gruskin, S., Bolshakova, M., Yagyu, S., Fu, N., Cabrera, N., Rozelle, M., Kasoka, K., Oraro-Lawrence, T., Stackpool-Moore, L., Motala, A., & Hempel, S. (2022). Frameworks and measures for HIV-related internalized stigma, stigma and discrimination in healthcare and in laws and policies: A systematic review. Journal of the International AIDS Society, 25(S1), e25915. https://doi.org/10.1002/jia2.25915
  • Flake, J. K., & Fried, E. I. (2020). Measurement schmeasurement: Questionable measurement practices and how to avoid them. Advances in Methods and Practices in Psychological Science, 3(4), 456–465. https://doi.org/10.1177/2515245920952393
  • 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), 348–376. https://doi.org/10.1037/sah0000104
  • Gavan, L., Hartog, K., Koppenol-Gonzalez, G. V., Gronholm, P. C., Feddes, A. R., Kohrt, B. A., Jordans, M. J. D., & Peters, R. M. H. (2022). Assessing stigma in low- and middle-income countries: A systematic review of scales used with children and adolescents. Social Science & Medicine, 307, Article 115121. https://doi.org/10.1016/j.socscimed.2022.115121
  • Gjesfjeld, C. D., Greeno, C. G., & Kim, K. H. (2008). A confirmatory factor analysis of an abbreviated social support instrument: The MOS-SSS. Research on Social Work Practice, 18(3), 231–237. https://doi.org/10.1177/1049731507309830
  • Gottert, A., McClair, T. L., Pulerwitz, J., Friedland, B. A., & the PLHIV Stigma Index 2.0 Study Group in Cambodia, the Dominican Republic and Uganda. (2020). What shapes resilience among people living with HIV? A multi-country analysis of data from the PLHIV Stigma Index 2.0. AIDS, 34(Suppl 1), S19–S31. https://doi.org/10.1097/QAD.0000000000002587
  • Heijnders, M. L., & Meij, S. V. D. (2006). The fight against stigma: An overview of stigma-reduction strategies and interventions. Psychology, Health & Medicine, 11(3), 353–363. https://doi.org/10.1080/13548500600595327
  • Herdman, M., Fox-Rushby, J., & Badia, X. (1998). A model of equivalence in the cultural adaptation of HRQoL instruments: The universalist approach. Quality of Life Research, 7(4), 323–335. https://doi.org/10.1023/A:1024985930536
  • Jones, E. E., Farina, A., Hastorf, A. H., Markus, H., Miller, D. T., & Scott, R. A. (1984). Social stigma: The psychology of marked relationships. W H Freeman.
  • Kane, J. C., Elafros, M. A., Murray, S. M., Mitchell, E. M. H., Augustinavicius, J. L., Causevic, S., & Baral, S. D. (2019). A scoping review of health-related stigma outcomes for high-burden diseases in low- and middle-income countries. BMC Medicine, 17(1), 17. https://doi.org/10.1186/s12916-019-1250-8
  • Katz, I. T., Ryu, A. E., Onuegbu, A. G., Psaros, C., Weiser, S. D., Bangsberg, D. R., & Tsai, A. C. (2013). Impact of HIV-related stigma on treatment adherence: Systematic review and meta-synthesis. Journal of the International AIDS Society, 16(3Suppl 2), https://doi.org/10.7448/IAS.16.3.18640
  • Koschorke, M., Evans-Lacko, S., Sartorius, N., & Thornicroft, G. (2017). Stigma in different cultures. In W. Gaebel, W. Rössler, & N. Sartorius (Eds.), The stigma of mental illness – end of the story? (pp. 67–82). Springer International Publishing. https://doi.org/10.1007/978-3-319-27839-1_4
  • Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27(1), 363–385. https://doi.org/10.1146/annurev.soc.27.1.363
  • Link, B. G., Yang, L. H., Phelan, J. C., & Collins, P. Y. (2004). Measuring mental illness stigma. Schizophrenia Bulletin, 30(3), 511–541. https://doi.org/10.1093/oxfordjournals.schbul.a007098
  • Logie, C., Earnshaw, V., Nyblade, L., Turan, J., Stangl, A., Poteat, T., Nelson, L., & Baral, S. (2021). A scoping review of the integration of empowerment-based perspectives in quantitative intersectional stigma research. Global Public Health. https://doi.org/10.1080/17441692.2021.1934061
  • Meier, S. T. (2023). Editorial: Persistence of measurement problems in psychological research. Frontiers in Psychology, 14, Article 1132185. https://doi.org/10.3389/fpsyg.2023.1132185
  • Misra, S., Mehta, H. T., Eschliman, E. L., Rampa, S., Poku, O. B., Wang, W.-Q., Ho-Foster, A. R., Mosepele, M., Becker, T. D., Entaile, P., Arscott-Mills, T., Opondo, P. R., Blank, M. B., & Yang, L. H. (2021). Identifying ‘what matters most’ to men in Botswana to promote resistance to HIV-related stigma. Qualitative Health Research, 31(9), 1680–1696. https://doi.org/10.1177/10497323211001361
  • Moore, R. C., Depp, C. A., Wetherell, J. L., & Lenze, E. J. (2016). Ecological momentary assessment versus standard assessment instruments for measuring mindfulness, depressed mood, and anxiety among older adults. Journal of Psychiatric Research, 75, 116–123. https://doi.org/10.1016/j.jpsychires.2016.01.011
  • Nyblade, L. (2006). Measuring HIV stigma: Existing knowledge and gaps. Psychology, Health & Medicine, 11(3), 335–345. https://doi.org/10.1080/13548500600595178
  • Oladele, D. A., Balogun, M. R., Odeyemi, K., & Salako, B. L. (2020). A comparative study of knowledge, attitude, and determinants of tuberculosis-associated stigma in rural and urban communities of Lagos state, Nigeria. Tuberculosis Research and Treatment, 2020. https://doi.org/10.1155/2020/1964759
  • Pachankis, J. E., Hatzenbuehler, M. L., Wang, K., Burton, C. L., Crawford, F. W., Phelan, J. C., & Link, B. G. (2018). The burden of stigma on health and well-being: A taxonomy of concealment, course, disruptiveness, aesthetics, origin, and peril across 93 stigmas. Personality and Social Psychology Bulletin, 44(4), 451–474. https://doi.org/10.1177/0146167217741313
  • Pantelic, M., Boyes, M., Cluver, L., & Meinck, F. (2017). HIV, violence, blame and shame: Pathways of risk to internalized HIV stigma among South African adolescents living with HIV. Journal of the International AIDS Society, 20(1), Article 21771. https://doi.org/10.7448/IAS.20.1.21771
  • Pantelic, M., Shenderovich, Y., Cluver, L., & Boyes, M. (2015). Predictors of internalised HIV-related stigma: A systematic review of studies in sub-Saharan Africa. Health Psychology Review, 9(4), 469–490. https://doi.org/10.1080/17437199.2014.996243
  • Peters, R. M. H., Hofker, M. E., van Brakel, W. H., Zweekhorst, M. B. M., Seda, F. S. S. E., Irwanto, I., & Bunders, J. F. G. (2014). Narratives around concealment and agency for stigma-reduction: A study of women affected by leprosy in Cirebon district, Indonesia. Disability, CBR & Inclusive Development, 25(4), 5–21. https://doi.org/10.5463/dcid.v25i4.389
  • Rai, S. S., Peters, R. M. H., Syurina, E. V., Irwanto, I., Naniche, D., & Zweekhorst, M. B. M. (2020). Intersectionality and health-related stigma: Insights from experiences of people living with stigmatized health conditions in Indonesia. International Journal for Equity in Health, 19(1), 206. https://doi.org/10.1186/s12939-020-01318-w
  • Rai, S. S., Syurina, E. V., Peters, R. M. H., Putri, A. I., Irwanto, I., & Zweekhorst, M. B. M. (2022). How do positive deviants overcome health-related stigma? An exploration of development of positive deviance among people with stigmatized health conditions in Indonesia. Qualitative Health Research, 32(4), 622–634. https://doi.org/10.1177/10497323211058164
  • Rai, S. S., Syurina, E. V., Peters, R. M. H., Putri, A. I., & Zweekhorst, M. B. M. (2020). Non-communicable diseases-related stigma: A mixed-methods systematic review. International Journal of Environmental Research and Public Health, 17(18). https://doi.org/10.3390/ijerph17186657
  • Reeves, S. L., Tse, C., Logel, C., & Spencer, S. J. (2021). When seeing stigma creates paternalism: Learning about disadvantage leads to perceptions of incompetence. Group Processes & Intergroup Relations. https://doi.org/10.1177/13684302211009590
  • Relf, M. V., Holzemer, W. L., Holt, L., Nyblade, L., & Ellis Caiola, C. (2021). A review of the state of the science of HIV and stigma: Context, conceptualization, measurement, interventions, gaps, and future priorities. The Journal of the Association of Nurses in AIDS Care: JANAC. https://doi.org/10.1097/JNC.0000000000000237
  • Sastre-Rus, M., García-Lorenzo, A., Lluch-Canut, M.-T., Tomás-Sábado, J., & Zabaleta-Del-Olmo, E. (2019). Instruments to assess mental health-related stigma among health professionals and students in health sciences: A systematic psychometric review. Journal of Advanced Nursing, 75(9), 1838–1853. https://doi.org/10.1111/jan.13960
  • Sermrittirong, S., & Van Brakel, W. (2014). Stigma in leprosy: Concepts, causes and determinants. Leprosy Review, 85(1), 36–47. https://doi.org/10.47276/lr.85.1.36
  • Shih, M. (2004). Positive stigma: Examining resilience and empowerment in overcoming stigma. The ANNALS of the American Academy of Political and Social Science, 591(1), 175–185. https://doi.org/10.1177/0002716203260099
  • Smith, M. K., Xu, R. H., Hunt, S. L., Wei, C., Tucker, J. D., Tang, W., Luo, D., Xue, H., Wang, C., Yang, L., Yang, B., Li, L., Joyner, B. L., & Sylvia, S. Y. (2020). Combating HIV stigma in low- and middle-income healthcare settings: A scoping review. Journal of the International AIDS Society, 23(8). https://doi.org/10.1002/jia2.25553
  • Sprague, L., Afifi, R., Ayala, G., & El-Nasoor, M. L. (2019). Participatory praxis as an imperative for health-related stigma research. BMC Medicine, 17(1), 32. https://doi.org/10.1186/s12916-019-1263-3
  • Srinivas, G., Kumar, S., Mohanraj, R., Sekkizhar, G., Muthuvel, T., Lal, V., Koemm, B., & Kasang, C. (2018). Development and validation of a scale to assess attitudes of health care providers towards persons affected by leprosy in southern India. PLOS Neglected Tropical Diseases, 12(9), e0006808. https://doi.org/10.1371/journal.pntd.0006808
  • Stahlman, S., Hargreaves, J. R., Sprague, L., Stangl, A. L., & Baral, S. D. (2017). Measuring sexual behavior stigma to inform effective HIV prevention and treatment programs for key populations. JMIR Public Health and Surveillance, 3(2). https://doi.org/10.2196/publichealth.7334
  • Stangl, A. L., Earnshaw, V. A., Logie, C. H., van Brakel, W., Simbayi, C., Barré, L., & Dovidio, I., & F, J. (2019). The health stigma and discrimination framework: A global, crosscutting framework to inform research, intervention development, and policy on health-related stigmas. BMC Medicine, 17(1), 31. https://doi.org/10.1186/s12916-019-1271-3
  • Stevelink, S. A. M., Hoekstra, T., Nardi, S. M. T., van der Zee, C. H., Banstola, N., Premkumar, R., Nicholls, P. G., & van Brakel, W. H. (2012). Development and structural validation of a shortened version of the participation scale. Disability and Rehabilitation, 34(19), 1596–1607. https://doi.org/10.3109/09638288.2012.656793
  • Stevelink, S. A. M., & van Brakel, W. H. (2013). The cross-cultural equivalence of participation instruments: A systematic review. Disability and Rehabilitation, 35(15), 1256–1268. https://doi.org/10.3109/09638288.2012.731132
  • Stevelink, S. A. M., Wu, I., Voorend, C., & Van Brakel, W. (2012). The psychometric assessment of internalized stigma instruments: A systematic review. Stigma, Research and Action, 2. https://doi.org/10.5463/sra.v1i3.35
  • Stier, A., & Hinshaw, S. (2007). Explicit and implicit stigma against individuals with mental illness. Australian Psychologist, 42(2), 106–117. https://doi.org/10.1080/00050060701280599
  • Straetemans, M., Bakker, M. I., & Mitchell, E. M. H. (2017). Correlates of observing and willingness to report stigma towards HIV clients by (TB) health workers in Africa. The International Journal of Tuberculosis and Lung Disease, 21(11), 6–18. https://doi.org/10.5588/ijtld.16.0913
  • Stutterheim, S., & Ratcliffe, S. (2021). Understanding and addressing stigma through qualitative research: Four reasons why we need qualitative studies. Stigma and Health, 6(1), 8–19. https://doi.org/10.1037/sah0000283
  • Sue, D. W. (2010). Microaggressions in everyday life: Race, gender, and sexual orientation. John Wiley & Sons.
  • Terwee, C. B., Bot, S. D. M., de Boer, M. R., van der Windt, D. A. W. M., Knol, D. L., Dekker, J., Bouter, L. M., & de Vet, H. C. W. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of Clinical Epidemiology, 60(1), 34–42. https://doi.org/10.1016/j.jclinepi.2006.03.012
  • Turan, J. M., Elafros, M. A., Logie, C. H., Banik, S., Turan, B., Crockett, K. B., Pescosolido, B., & Murray, S. M. (2019). Challenges and opportunities in examining and addressing intersectional stigma and health. BMC Medicine, 17(1), 7. https://doi.org/10.1186/s12916-018-1246-9
  • van Brakel, W. H. (2006). Measuring health-related stigma – a literature review. Psychology, Health & Medicine, 11(3), 307–334. https://doi.org/10.1080/13548500600595160
  • Van Brakel, W. H., Cataldo, J., Grover, S., Kohrt, B. A., Nyblade, L., Stockton, M., Wouters, E., & Yang, L. H. (2019). Out of the silos: Identifying cross-cutting features of health-related stigma to advance measurement and intervention. BMC Medicine, 17(1). https://doi.org/10.1186/s12916-018-1245-x
  • Van Brakel, W. H., Peters, R. M. H., & Bakirtzief da Silva Pereira, Z. (2019). Chapter 4.5: Stigma related to leprosy – a scientific view. In D. M. Scollard & T. P. Gillis (Eds.), International textbook of leprosy. American Leprosy Missions. https://doi.org/10.1489/itl.4.5
  • Varas-Díaz, N., Rivera, M., Rivera-Segarra, E., Neilands, T. B., Ortiz, N., Pedrogo, Y., Mendoza, S., Rivera Amador, A., Martínez García, S., Rivera Suazo, S., & Albizu-García, C. E. (2017). Beyond negative attitudes: Examining HIV/AIDS stigma behaviors in clinical encounters. AIDS Care, 29(11), 1437–1441. https://doi.org/10.1080/09540121.2017.1322679
  • Varas-Díaz, N., Rivera-Segarra, E., Neilands, T. B., Pedrogo, Y., Carminelli-Corretjer, P., Tollinchi, N., Torres, E., Del Valle, Y. S., Rivera Díaz, M., & Ortiz, N. (2019). HIV/AIDS and intersectional stigmas: Examining stigma related behaviours among medical students during service delivery. Global Public Health, 14(11), 1598–1611. https://doi.org/10.1080/17441692.2019.1633378
  • Wei, Y., McGrath, P., Hayden, J., & Kutcher, S. (2017). The quality of mental health literacy measurement tools evaluating the stigma of mental illness: A systematic review. Epidemiology and Psychiatric Sciences, 27(5), 433–462. https://doi.org/10.1017/S2045796017000178
  • Weiss, M. G., Doongaji, D. R., Siddhartha, S., Wypij, D., Pathare, S., Bhatawdekar, M., Bhave, A., Sheth, A., & Fernandes, R. (1992). The explanatory model interview catalogue (EMIC): Contribution to cross-cultural research methods from a study of leprosy and mental health. The British Journal of Psychiatry, 160(6), 819–830. https://doi.org/10.1192/bjp.160.6.819
  • Weiss, M. G., & Ramakrishna, J. (2006). Stigma interventions and research for international health. The Lancet, 367(9509), 536–538. https://doi.org/10.1016/S0140-6736(06)68189-0
  • Windle, G., Bennett, K. M., & Noyes, J. (2011). A methodological review of resilience measurement scales. Health and Quality of Life Outcomes, 9(1), 8. https://doi.org/10.1186/1477-7525-9-8
  • Wouters, E., Masquillier, C., Sommerland, N., Engelbrecht, M., Van Rensburg, A. J., Kigozi, G., & Rau, A. (2017). Measuring HIV- and TB-related stigma among health care workers in South Africa: A validation and reliability study. The International Journal of Tuberculosis and Lung Disease, 21(11), S19–S25. https://doi.org/10.5588/ijtld.16.0749
  • Yang, L. H., Chen, F., Sia, K. J., Lam, J., Lam, K., Ngo, H., Lee, S., Kleinman, A., & Good, B. (2014). ‘What matters most’: A cultural mechanism moderating structural vulnerability and moral experience of mental illness stigma. Social Science & Medicine, 103, 84–93. https://doi.org/10.1016/j.socscimed.2013.09.009
  • Yang, L. H., Ho-Foster, A. R., Becker, T. D., Misra, S., Rampa, S., Poku, O. B., Entaile, P., Goodman, M., & Blank, M. B. (2021). Psychometric validation of a scale to assess culturally-salient aspects of HIV stigma among women living with HIV in Botswana: Engaging ‘what matters most’ to resist stigma. AIDS and Behavior, 25(2), 459–474. https://doi.org/10.1007/s10461-020-03012-y
  • Yang, L. H., Kleinman, A., Link, B. G., Phelan, J. C., Lee, S., & Good, B. (2007). Culture and stigma: Adding moral experience to stigma theory. Social Science & Medicine, 64(7), 1524–1535. https://doi.org/10.1016/j.socscimed.2006.11.013
  • Yang, L. H., Thornicroft, G., Alvarado, R., Vega, E., & Link, B. G. (2014). Recent advances in cross-cultural measurement in psychiatric epidemiology: Utilizing ‘what matters most’ to identify culture-specific aspects of stigma. International Journal of Epidemiology, 43(2), 494–510. https://doi.org/10.1093/ije/dyu039
  • Young, R. E., Goldberg, J. O., Struthers, C. W., McCann, D., & Phills, C. E. (2019). The subtle side of stigma: Understanding and reducing mental illness stigma from a contemporary prejudice perspective. Journal of Social Issues, 75(3), 943–971. https://doi.org/10.1111/josi.12343