Skip to main content
SpringerLink
Log in

The Experience of HIV-Related Stigma in South Africa

  • Chapter
  • First Online:
Stigma, Discrimination and Living with HIV/AIDS

Abstract

In our research in a South African community, we examined HIV-related stigma among women who were HIV infected (n = 609) and a community sample of unknown status (n = 1,077) using qualitative and quantitative methods. Our research showed that an HIV diagnosis was often associated with death, immoral behaviour, punishment and lack of adherence to cultural traditions. HIV-infected women perceived the community to be highly stigmatising, and they internalised aspects of the stigma in their own self-evaluation. The degree to which they perceived community members to be stigmatising was directly linked to their own internalised stigma. This perception had a negative influence on their psychological well-being, including increased depression and decreased self-esteem and disclosure of their HIV status. Despite their fear of disclosure, women did not report high levels of enacted stigma. Internalised stigma and the stigma attributed to others both declined slightly over the last several years, largely due to increases in HIV/AIDS knowledge. In contrast, although community members did not reveal high levels of personal stigma, they regarded others in their community to be highly stigmatising. Factors contributing to community stigma were age, gender, level of education, HIV knowledge and personal experience of knowing someone with HIV. Typical stigmatising reactions were mostly observed in subtle behaviour, though acts of overt discrimination were also reported. These data highlight the importance of different perspectives on HIV-related stigma. Results are interpreted in the context of developments around HIV/AIDS policy in South Africa which allow us to make suggestions to address HIV stigma in this community.

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

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 129.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 169.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 169.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Abdool Karim, Q. (1998). Women and AIDS, the imperative for a gendered prognosis and preventive policy. Agenda, 39, 15–25.

    Google Scholar 

  • Aggleton, P., & Chase, E. (2001). Stigma, HIV/AIDS and prevention of mother-to-child transmission: A pilot study in Zambia, India, Ukraine and Burkina Faso. New York: United Nations Children’s Fund (UNICEF)/The Panos Institute.

    Google Scholar 

  • Amuyunzu-Nyamongo, M., Okeng’o, L., Wagura, A., & Mwenzwa, E. (2007). Putting on a brave face: The experiences of women living with HIV and AIDS in informal settlements of Nairobi, Kenya. AIDS Care, 19(1), S25–S34.

    Article  Google Scholar 

  • Bauman, L. J., & Weiss, E. (1995). Multidimensional social support inventory: Revised. Bronx: Albert Einstein College of Medicine.

    Google Scholar 

  • Berger, B., Ferrans, C. E., & Lashley, F. R. (2001). Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale. Research in Nursing and Health, 24(6), 518–529.

    Article  Google Scholar 

  • Bond, V., Chase, E., & Aggleton, P. (2002). Stigma, HIV/AIDS and prevention of mother-to-child transmission in Zambia. Evaluation and Program Planning, 25(4), 347–356.

    Article  Google Scholar 

  • Brandt, R. (2009). Putting mental health on the agenda for HIV+ women: A review of evidence from Sub-Saharan Africa. Women & Health, 49(2), 215–228.

    Article  Google Scholar 

  • Butler, A. (2005). South Africa’s HIV/AIDS policy, 1994–2004: How can it be explained? African Affairs, 104(417), 591–614.

    Article  Google Scholar 

  • Campbell, C., Foulis, C., Maimane, S., & Sibiya, Z. (2005). ‘I have an evil child at my house’: Stigma and HIV/AIDS management in a South African community. American Journal of Public Health, 95(5), 808–815.

    Article  Google Scholar 

  • Campbell, C., Nair, Y., Maimane, S., & Nicholson, J. (2007). “Dying twice”: A multi-level model of the roots of AIDS stigma in two South African communities. Journal of Health Psychology, 12(3), 403–416.

    Article  Google Scholar 

  • Carver, C. S. (1997). You want to measure coping but your protocol’s too long: Consider the Brief COPE. International Journal of Behavioral Medicine, 4(1), 92–100.

    Article  Google Scholar 

  • Chigwedere, P., Seage, G. R., Gruskin, S., Lee, T.-H., & Essex, M. (2008). Estimating the lost benefits of antiretroviral drug use in South Africa. Journal of Acquired Immune Deficiency Syndrome, 49(4), 410–415.

    Article  Google Scholar 

  • Crawford, A. M. (1996). Stigma associated with AIDS: A meta-analysis. Journal of Applied Social Psychology, 26(5), 398–416.

    Article  Google Scholar 

  • Deacon, H., Stephney, I., & Prosalendis, S. (2005). Understanding HIV/AIDS stigma: A theoretical and methodological analysis. Cape Town: Human Sciences Research Council.

    Google Scholar 

  • Department of Health. (2009). 2008 National antenatal sentinel HIV and syphilis prevalence survey, South Africa. Pretoria: Department of Health.

    Google Scholar 

  • Forsyth, B., Vandormael, A., Kershaw, T., & Grobbelaar, J. (2008). The political context of AIDS-­related stigma and knowledge in a South African township community. Journal of Social Aspects of HIV/AIDS, 5(2), 74–82.

    Article  Google Scholar 

  • Freeman, M., Nkomo, N., Kafoor, Z., & Kelly, K. (2007). Factors associated with prevalence of mental disorder in people living with HIV/AIDS in South Africa. AIDS Care, 19(10), 1201–1209.

    Article  Google Scholar 

  • Gilmore, N., & Somerville, M. A. (1994). Stigmatization, scapegoating and discrimination in sexually transmitted diseases: Overcoming ‘them’ and ‘us’. Social Sciences & Medicine, 39(9), 1339–1358.

    Article  Google Scholar 

  • Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs: Prentice-Hall.

    Google Scholar 

  • Grimond, J. (2001, February 24–March 2). A survey of South Africa. Africa’s great black hope. The Economist, pp. 3–16.

    Google Scholar 

  • Herek, G. M., Capitanio, J. P., & Widaman, K. F. (2002). HIV-related stigma and knowledge in the United States: Prevalence and trends, 1991–1999. American Journal of Public Health, 92(3), 371–377.

    Article  Google Scholar 

  • Horton, R. (2000). Mbeki defiant about South African HIV/AIDS strategy. Lancet, 356(July 15), 225–232.

    Google Scholar 

  • Kalichman, S. C., Rompa, D., & Cage, M. (2000). Distinguishing between overlapping somatic symptoms of depression and HIV disease in people living with HIV-AIDS. The Journal of Nervous and Mental Disease, 188(10), 662–670.

    Article  Google Scholar 

  • Kalichman, S. C., DiMarco, M., Austin, J., Luke, W., & DiFonzo, K. (2003). Stress, social support and HIV-status disclosure to family and friends among HIV-positive men and women. Journal of Behavioral Medicine, 26(4), 315–332.

    Article  Google Scholar 

  • Kasese-Hara, M., Mayeksio, T., Modipa, O., Mzobe, N., & Mango, T. (2008). Depression, mother’s concerns and life events experienced by HIV-positive, HIV-negative and mothers with unknown HIV status in Soweto. South African Journal of Psychology, 38(3), 575–588.

    Article  Google Scholar 

  • Makin, J. D., Forsyth, B. W. C., Visser, M. J., Sikkema, K. J., Neufeld, S., & Jeffery, B. (2008). Factors affecting disclosure in South African HIV positive pregnant women. AIDS Patient Care and STDs, 22(11), 907–916.

    Article  Google Scholar 

  • Mbonu, N. C., van den Borne, B., & De Vries, N. K. (2009). Stigma of people with HIV/AIDS Sub-Saharan Africa: A literature review. Journal of Tropical Medicine, 2009, 1–14. doi:10.1155/2009/145891, Article ID 145891.

    Article  Google Scholar 

  • Mdlalose, B. N. N. (2006). Women’s experience of being HIV positive, the stigma related to HIV and disclosure of their status. Unpublished dissertation. University of Pretoria, Pretoria.

    Google Scholar 

  • Niehaus, I. (2006, October). Leprosy of a deadlier kind: Conceptions of AIDS, sex and death in the South African lowveld. Paper presented at the Institute for Social and Economic Research, Rhodes University, Grahamstown.

    Google Scholar 

  • Nyblade, L., & MacQuarrie, K. (2006). Can we measure HIV/AIDS-related stigma and ­discrimination? Current knowledge about quantifying stigma in developing countries. Policy project. Washington, DC: International Center for Research on Women (ICRW) and United States Agency for International Development (USAID).

    Google Scholar 

  • Nyblade, L., Pande, R., Mathur, S., MacQuarrie, K., Kidd, R., Banteyerga, H., Kidanu, A., Kilonzo, G., Mbwambo, J., & Bond, V. (2003). Disentangling HIV and AIDS stigma in Ethiopia, Tanzania and Zambia. Washington, DC: International Center for Research on Women (ICRW).

    Google Scholar 

  • Ogden, J., & Nyblade, L. (2005). Common at its core: HIV-related stigma across contexts. Washington, DC: International Center for Research on Women (ICRW).

    Google Scholar 

  • Parker, R., & Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: A conceptual framework and implications for action. Social Science & Medicine, 57, 13–24.

    Article  Google Scholar 

  • Parker, R., Aggleton, P., Attawell, K., Pulerwits, J., & Brown, L. (2002). HIV/AIDS-related stigma and discrimination: A conceptual framework and an agenda for action. Horizons Program. New York: The Population Council.

    Google Scholar 

  • Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychology Measurement, 1(3), 385–401.

    Article  Google Scholar 

  • Rosenberg, M. (1965). Society and the adolescent self image. Princeton: Princeton University Press.

    Google Scholar 

  • Sethosa, E., & Petlzer, K. (2005). Evaluation of HIV counselling and testing, self-disclosure, social support and sexual behaviour change among a rural sample of HIV reactive patients in South Africa. Curationis, 28(1), 29–41.

    Article  Google Scholar 

  • Sherriffs, P. (1997). A time for review – HIV in a democratic South Africa. Positive Outlook, 4(3), 10–12.

    Google Scholar 

  • Shisana, O., Rehle, T., Simbayi, L. C., Zuma, K., Jooste, S., Pillay-van-Wyk, V., Mbelle, N., Van Zyl, J., Parker, W., Zungu, N. P., Pezi, S., & The SABSSM III Implementation Team. (2009). South African national HIV prevalence, incidence, behaviour and communication survey 2008: A turning tide among teenagers? Cape Town: HSRC Press.

    Google Scholar 

  • Stemler, S. (2002). An overview of content analysis practical assessment. Research & Evaluation, 7(17), 124–130.

    Google Scholar 

  • Strebel, A., Crawford, M., Shefer, T., Cloete, A., Henda, N., Kaufman, M., et al. (2006). Social constructions of gender roles, gender-based violence and HIV/AIDS in two communities of the Western Cape, South Africa. SAHARA, 3(3), 516–528.

    Article  Google Scholar 

  • Struwig, F. W., & Stead, G. B. (2001). Planning, designing and reporting research. Cape Town: Pearson Education.

    Google Scholar 

  • UNAIDS. (2010). UNAIDS report on the global AIDS epidemic. Geneva: Joint United Nations Programme on HIV/AIDS.

    Google Scholar 

  • Visser, M. J., Kershaw, T., Makin, J. D., & Forsyth, B. W. C. (2008). Development of parallel scales to measure HIV-related stigma. AIDS and Behavior, 12, 759–771.

    Article  Google Scholar 

  • Visser, M. J., Makin, J. D., Vandormael, A., Sikkema, K. J., & Forsyth, B. W. C. (2009). HIV/AIDS stigma in a South African community. AIDS Care, 21(2), 197–206.

    Article  Google Scholar 

  • Warwick, I., Bharat, S., Castro, R., Garcia, R., Leshabari, M., Singhanetra-Renard, A., & Aggleton, P. (1998). Household and community responses to AIDS in developing countries. Critical Public Health, 8(4), 291–310.

    Article  Google Scholar 

  • World Health Organization. (1990). Research package: Knowledge, attitudes, beliefs and practices on AIDS, Phase 1: The Questionnaire. The global programme on AIDS, Social and Behavioural Research Unit. Geneva: World Health Organization.

    Google Scholar 

Download references

Acknowledgement

This study was funded by National Institute of Child Health and Human Development (NICHD) grant R24HD43558. The research referred to in this chapter was done in a joint venture between researchers at the University of Pretoria and Yale University, under the leadership of Brian Forsyth, Bridget Jeffrey and Jenny Makin. The authors would like to acknowledge the contribution of the following colleagues in various aspects of this research: Jonathan Mundell, Annelize de Villiers, (University of Pretoria), Kathleen Sikkema (Duke University) and the Serithi team of research assistants, R. Mkhondo, J. Tatane, M. Zondo, J., Ramodike, F. Nkomo, R. Kgoebane, M. Dikolometsa, P. Mabota, B. Moalosi, S. Sono and K. Lehobye.

We would like to thank the women who agreed to participate in the study, despite only recently finding out about their HIV status.

Author information

Authors and Affiliations

  1. Department of Psychology, University of Pretoria, Pretoria, 0002, South Africa

    Maretha Visser

  2. School of Public Health, Yale University, New Haven, CT, USA

    Heather Sipsma

Authors
  1. Maretha Visser
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Heather Sipsma
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Maretha Visser .

Editor information

Editors and Affiliations

  1. School of Public Health, La Trobe University, Bundoora, 3086, Victoria, Australia

    Pranee Liamputtong

Additional information

Note

The chapter integrates a large number of findings from the Serithi project and draws from several research papers based on the data of this overall project.

Rights and permissions

Reprints and permissions

Copyright information

© 2013 Springer Science+Business Media Dordrecht

About this chapter

Cite this chapter

Visser, M., Sipsma, H. (2013). The Experience of HIV-Related Stigma in South Africa. In: Liamputtong, P. (eds) Stigma, Discrimination and Living with HIV/AIDS. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-6324-1_12

Download citation

Publish with us

Policies and ethics

Search

Navigation