Skip to main content

Advertisement

SpringerLink
Log in

Experiences of Stigma, Discrimination, Care and Support Among People Living with HIV: A Four Country Study

  • Original Paper
  • Published:
AIDS and Behavior Aims and scope Submit manuscript

Abstract

While it is widely agreed that HIV-related stigma may impede access to treatment and support, there is little evidence describing who is most likely to experience different forms of stigma and discrimination and how these affect disclosure and access to care. This study examined experiences of interpersonal discrimination, internalized stigma, and discrimination at health care facilities among HIV-positive adults aged 18 years and older utilizing health facilities in four countries in Sub-Saharan Africa (N = 536). Prevalence of interpersonal discrimination across all countries was 34.6 %, with women significantly more likely to experience interpersonal discrimination than men. Prevalences of internalized stigma varied across countries, ranging from 9.6 % (Malawi) to 45.0 % (Burkina Faso). Prevalence of health care discrimination was 10.4 % across all countries. In multiple regression analyses, we found positive, significant, and independent associations between disclosure and interpersonal discrimination and disclosure and support group utilization, and positive associations between both internalized stigma and health care discrimination and referral for medications.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Dlamini PS, Wantland D, Makoae LN, et al. HIV stigma and missed medications in HIV-positive people in five African countries. AIDS Patient Care STDS. 2009;23(5):377–87.

    Article  PubMed  Google Scholar 

  2. Chesney MA, Smith AW. Critical delays in HIV testing and care. Am Behav Sci. 1999;42(7):1162–74.

    Article  Google Scholar 

  3. Kalichman SC, Simbayi LC. HIV testing attitudes, AIDS stigma, and voluntary HIV counselling and testing in a black township in Cape Town, South Africa. Sex Trans Infect. 2003;79(6):442–7.

    Article  CAS  Google Scholar 

  4. World Health Organization, UNAIDS, UNICEF. Toward universal access: scaling up HIV/AIDS interventions in the health sector. Geneva: World Health Organization; 2007.

    Google Scholar 

  5. Link BG, Phelan JC. Conceptualizing stigma. Ann Revi Sociol. 2001;27:363–85.

    Article  Google Scholar 

  6. Mahajan AP, Sayles JN, Patel VA, et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS. 2008;22(Suppl 2):S67–79.

    Article  PubMed  Google Scholar 

  7. Holzemer WL, Uys L, Makoae L, et al. A conceptual model of HIV/AIDS stigma from five African countries. J Adv Nurs. 2007;58(6):541–51.

    Article  PubMed  Google Scholar 

  8. Deacon H. Towards a sustainable theory of health-related stigma: lessons from the HIV/AIDS literature. J Community Appl Soc Psychol. 2006;16(6):418–25.

    Article  Google Scholar 

  9. Visser M, Kershaw T, Makin J, Forsyth B. Development of Parallel Scales to Measure HIV-Related Stigma. AIDS Behav. 2008;12(5):759–71.

    Article  PubMed  Google Scholar 

  10. Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Res Nurs Health. 2001;24(6):518–29.

    Article  PubMed  CAS  Google Scholar 

  11. Bunn JY, Solomon SE, Miller C, Forehand R. Measurement of stigma in people with HIV: a reexamination of the HIV Stigma Scale. AIDS Educ Prev. 2007;19(3):198–208.

    Article  PubMed  Google Scholar 

  12. Kang E, Rapkin BD, Remien RH, Mellins CA, Oh A. Multiple dimensions of HIV stigma and psychological distress among Asians and Pacific Islanders living with HIV illness. AIDS Behav. 2005;9(2):145–54.

    Article  PubMed  Google Scholar 

  13. Fife BL, Wright ER. The dimensionality of stigma: a comparison of its impact on the self of persons with HIV/AIDS and cancer. J Health Soc Behav. 2000;41(1):50–67.

    Article  PubMed  CAS  Google Scholar 

  14. Li X, Wang H, Williams A, He G. Stigma reported by people living with HIV in south central China. J Assoc Nurs AIDS Care. 2009;20(1):22–30.

    Article  Google Scholar 

  15. Simbayi LC, Kalichman S, Strebel A, Cloete A, Henda N, Mqeketo A. Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town. S Afr Soc Sci Med. 2007;64(9):1823–31.

    Article  Google Scholar 

  16. Yebei VN, Fortenberry JD, Ayuku DO. Felt stigma among people living with HIV/AIDS in rural and urban Kenya. Afr Health Sci. 2008;8(2):97–102.

    PubMed  Google Scholar 

  17. Hong KT, Anh N, Ogden J. Understanding HIV and AIDS-related stigma and discrimination in Vietnam. Washington, DC: International Center for Research on Women; 2004.

    Google Scholar 

  18. Kinsler JJ, Wong MD, Sayles JN, Davis C, Cunningham WE. The effect of perceived stigma from a health care provider on access to care among a low-income HIV-positive population. AIDS Patient Care STDS. 2007;21(8):584–92.

    Article  PubMed  Google Scholar 

  19. Schuster MA, Collins R, Cunningham WE, et al. Perceived discrimination in clinical care in a nationally representative sample of HIV-infected adults receiving health care. J Gen Intern Med. 2005;20(9):807–13.

    Article  PubMed  Google Scholar 

  20. Serovich JM. A test of two HIV disclosure theories. AIDS Educ Prev. 2001;13(4):355.

    Article  PubMed  CAS  Google Scholar 

  21. Kalichman SC, DiMarco M, Austin J, Luke W, DiFonzo K. Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. J Behav Med. 2003;26(4):315–32.

    Article  PubMed  Google Scholar 

  22. Medley A, Garcia-Moreno C, McGill S, Maman S. Rates, barriers and outcomes of HIV serostatus disclosure among women in developing countries: implications for prevention of mother-to-child transmission programmes. Bull World Health Organ. 2004;82(4):299–307.

    PubMed  Google Scholar 

  23. Obermeyer CM, Baijal P, Pegurri E. Facilitating HIV disclosure across diverse settings: a review. Am J Public Health. 2011;101(6):1011.

    Article  PubMed  Google Scholar 

  24. Vanable PA, Carey MP, Blair DC, Littlewood RA. Impact of HIV-related stigma on health behaviors and psychological adjustment among HIV-positive men and women. AIDS Behav. 2006;10(5):473–82.

    Article  PubMed  Google Scholar 

  25. Clark HJ, Lindner G, Armistead L, Austin B-J. Stigma, disclosure, and psychological functioning among HIV-infected and non-infected African-American women. Women Health. 2004;38(4):57–71.

    Article  Google Scholar 

  26. Preston DB, D’Augelli AR, Kassab CD, Cain RE, Schulze FW, Starks MT. The influence of stigma on the sexual risk behavior of rural men who have sex with men. AIDS Educ Prev. 2004;16(4):291–303.

    Article  PubMed  Google Scholar 

  27. Rintamaki LS, Davis TC, Skripkauskas S, Bennett CL, Wolf MS. Social stigma concerns and HIV medication adherence. AIDS Patient Care STD. 2006;20(5):359–68.

    Article  Google Scholar 

  28. Smith R, Rossetto K, Peterson BL. A meta-analysis of disclosure of one’s HIV-positive status, stigma and social support. AIDS Care. 2008;20(10):1266–75.

    Article  PubMed  Google Scholar 

  29. Obermeyer CM, Neuman M, Desclaux A, et al. Associations between mode of HIV testing and consent, confidentiality, and referral: a comparative analysis in four african countries. PLoS Med. 2012;9(10):e1001329. doi:10.1371/journal.pmed.1001329.

    Article  PubMed  Google Scholar 

  30. Nyblade L, MacQuarrie K. Can we measure HIV/AIDS-related stigma and discrimination. Current knowledge about quantifying stigma in developing countries. Washington DC: United States Agency for International Development; 2006.

    Google Scholar 

  31. Pulerwitz J, Michaelis A, Weiss E, Brown L, Mahendra V. Reducing HIV-related stigma: lessons learned from Horizons research and programs. Public Health Rep. 2010;125(2):272.

    PubMed  Google Scholar 

  32. Obermeyer C, Bott S, Carrieri P, et al. HIV testing, treatment, and prevention: Generic tools for operational research. Geneva: World Health Organization; 2009.

    Google Scholar 

  33. DeVellis RF. Scale development : theory and applications. Newbury Park: Sage; 1991.

    Google Scholar 

  34. Zou G. A modified Poisson regression approach to prospective studies with binary data. Am J Epidemiol. 2004;159(7):702.

    Article  PubMed  Google Scholar 

  35. StataCorp. Stata 10.1 SE. College Station: StataCorp LP; 2007.

  36. Gielen AC, McDonnell KA, Burke JG, O’Campo P. Women’s Lives After an HIV-Positive Diagnosis: disclosure and Violence. Matern Child Health J. 2000;4(2):111–20.

    Article  PubMed  CAS  Google Scholar 

  37. Maman S, Abler L, Parker L, et al. A comparison of HIV stigma and discrimination in five international sites: the influence of care and treatment resources in high prevalence settings. Soc Sci Med. 2009;68(12):2271–8.

    Article  PubMed  Google Scholar 

  38. Castro A, Farmer P. Understanding and addressing AIDS-related stigma: from anthropological theory to clinical practice in Haiti. Am J Public Health. 2005;95(1):53–9.

    Article  PubMed  Google Scholar 

  39. Genberg BL, Hlavka Z, Konda KA, et al. A comparison of HIV/AIDS-related stigma in four countries: negative attitudes and perceived acts of discrimination towards people living with HIV/AIDS. Soc Sci Med. 2009;68(12):2279–87.

    Article  PubMed  Google Scholar 

  40. Zukoski AP, Thorburn S. Experiences of stigma and discrimination among adults living with HIV in a low HIV-prevalence context: a qualitative analysis. AIDS Patient Care STD. 2009;23(4):267–76.

    Article  Google Scholar 

  41. Smith KP, Watkins SC. Perceptions of risk and strategies for prevention: responses to HIV/AIDS in rural Malawi. Soc Sci Med. 2005;60(3):649–60.

    Article  PubMed  Google Scholar 

  42. Owolabi RS, Araoye MO, Osagbemi GK, Odeigah L, Ogundiran A, Hussain NA. Assessment of stigma and discrimination experienced by people living with HIV and AIDS receiving care/treatment in University of Ilorin Teaching Hospital (UITH), Ilorin, Nigeria. J Intern Assoc Phys AIDS Care (JIAPAC). 2011;11(2):121–7.

  43. Gielen AC, Fogarty L, O’Campo P, Anderson J, Keller J, Faden R. Women living with HIV: disclosure, violence, and social support. J Urban Health. 2000;77(3):480–91.

    Article  PubMed  CAS  Google Scholar 

  44. Obermeyer CM, Sankara A, Bastien V, Parsons M. Gender and HIV testing in Burkina Faso: an exploratory study. Soc Sci Med. 2009;69(6):877–84.

    Article  PubMed  Google Scholar 

  45. Makoae LN, Greeff M, Phetlhu RD, et al. Coping with HIV-related stigma in five African countries. J Assoc Nurs AIDS Care. 2008;19(2):137–46.

    Article  Google Scholar 

  46. Meyer IH. Prejudice as stress: conceptual and measurement problems. J Info. 2003;93(2):262–5.

    Google Scholar 

  47. Ogden J, Nyblade L. Common at its core: HIV-related stigma across contexts. Washington DC: International Center for Research on Women; 2005.

    Google Scholar 

Download references

Acknowledgments

The project was supported by a Grant from the National Institutes of Health, 5 R01 HD053268-05, to Carla Makhlouf Obermeyer (CMO). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. All authors had full access to all the data and can take responsibility for the integrity of the data and the accuracy of the data analysis.

Conflict of interest

No conflicts of interest are declared for any of the authors. At the time that the project was conducted, Carla Makhlouf Obermeyer was a Scientist at the World Health Organization (WHO), and the project benefitted from discussions of policies and programs related to testing and counseling around the world, but the WHO did not define the project or influence data collection, analysis or interpretation.

Author information

Authors and Affiliations

  1. Institute for Global Health, University College London, 30 Guilford Street, London, WC1N 1EH, UK

    Melissa Neuman

  2. Faculty of Health Sciences, American University of Beirut, Beirut, Lebanon

    Carla Makhlouf Obermeyer

Authors
  1. Melissa Neuman
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Carla Makhlouf Obermeyer
    View author publications

    You can also search for this author in PubMed Google Scholar

Consortia

The MATCH Study Group

Corresponding author

Correspondence to Melissa Neuman.

Additional information

The members of the MATCH study group are given in Appendix.

Appendix

Appendix

The members of the MATCH study group are:

Peter Cherutich (National AIDS Control Program, Nairobi, Kenya).

Alice Desclaux (Unité Mixte Internationale 233 TRANSVIHMI, Institut de Recherche pour le Développement, Dakar, Sénégal).

Anita Hardon (University of Amsterdam, Amsterdam, The Netherlands).

Odette Ky-Zerbo (Programme d’Appui au Monde Associatif et Communautaire, Ouagadougou, Burkina Faso).

Ireen Namakhoma (Reach Trust, Lilongwe, Malawi).

Rhoda Wanyenze (Makerere University School of Public Health, Kampala, Uganda).

Rights and permissions

Reprints and permissions

About this article

Cite this article

Neuman, M., Obermeyer, C.M. & The MATCH Study Group. Experiences of Stigma, Discrimination, Care and Support Among People Living with HIV: A Four Country Study. AIDS Behav 17, 1796–1808 (2013). https://doi.org/10.1007/s10461-013-0432-1

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10461-013-0432-1

Keywords

Search

Navigation