HIV and Stigma in South Africa

  • Harriet Deacon
  • Leana Uys
  • Rakgadi Mohlahlane
Chapter

Abstract

Jonathan Mann (1996) was one of the first and most important lobbyists for HIV and AIDS-related stigma research on the international stage. He argued that stigma exacerbated the effects of the epidemic and reduced the efficacy of AIDS programming efforts. During the 1990s and 2000s there was thus an increase in the amount of research on HIV and AIDS-related stigma internationally. This research suggested that stigma and discrimination reduces the impact of prevention programmes, inhibits treatment take-up and adherence, exacerbates the psycho-social effects of HIV-infection and reduces the quality of life of people living with HIV and AIDS (for a review, see Deacon et al., 2005 and Deacon and Stephney, 2007). The United Nations agency for AIDS, UNAIDS, thus chose stigma as its campaign theme for World AIDS Day in 2003.

Keywords

Depression Malaria Stein Kelly Folk 

References

  1. Almeleh, C. (2006). Why do people disclose their HIV status? Qualitative evidence from a group of activist women in Khayelitsha. CSSR Working Paper No.163. AIDS and Society Research Unit, Centre for Social Science Research, University of Cape Town: Cape Town. http://www.commerce.uct.ac.za/Research_Units/CSSR/pubs_cssr_display.asp. Accessed 28 May 2008.
  2. Ashforth, A. (2001). AIDS, witchcraft, and the problem of public power in post-apartheid South Africa. Paper delivered at the AIDS in Context Conference, University of the Witwatersrand.Google Scholar
  3. Berger, B.E., Ferrans, C.E., and 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.PubMedCrossRefGoogle Scholar
  4. Birdsall, K., and Kelly, K. (2007). Pioneers, partners, providers: The dynamics of civil society and AIDS funding in southern Africa. CADRE/OSISA.Google Scholar
  5. Bond, V., and Nyblade, L. (2006). The importance of addressing the unfolding TB-HIV stigma in high prevalence settings. Journal of Community and Applied Social Psychology, 16, 452–461.CrossRefGoogle Scholar
  6. Brown, L., Macintyre, K., and Trujillo, L. (2003). Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Education and Prevention, 15(1), 49–69.PubMedCrossRefGoogle Scholar
  7. Cameron, E. (2005). Witness to AIDS. Cape Town: Tafelberg Press.Google Scholar
  8. Cameron, E. (2007). Discussion: Normalizing testing – normalizing AIDS. Theoria: A Journal of Social & Political Theory, 99–108.Google Scholar
  9. Campbell, C., Foulis, C.A., Maimane, S., and Sibiya, Z. (2005a). ‘I have an evil child at my house’: Stigma and HIV/AIDS management in a South African community. American Journal of Public Health, 95, 808–815.PubMedCrossRefGoogle Scholar
  10. Campbell, C., Foulis, C.A., Maimane, S., and Sibiya, Z. (2005b). The impact of social environments on the effectiveness of youth HIV prevention: A South African case study. AIDS Care, 17, 471–478.PubMedCrossRefGoogle Scholar
  11. Campbell, C., Nair, Y., and Maimane, S. (2006). AIDS stigma, sexual moralities and the policing of women and youth in South Africa. Feminist Review, 82, 132–138.CrossRefGoogle Scholar
  12. Campbell, C., Nair, Y., Maimane, S., and 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, 403–416.PubMedCrossRefGoogle Scholar
  13. Clark, J. (2006). The role of language and gender in the naming and framing of HIV/AIDS in the South African context. Southern African Linguistics and Applied Language Studies, 24, 461–471.CrossRefGoogle Scholar
  14. Cluver, L., and Gardner, F. (2007). Risk and protective factors for psychological well-being of children orphaned by AIDS in Cape Town: a qualitative study of children and caregivers’ perspectives. AIDS Care, 19, 318–325.PubMedCrossRefGoogle Scholar
  15. Dageid, W., and Duckert, F. (2007). The process of evaluating a capacity-building support initiative for HIV positive South Africans. Evaluation and Program Planning, 30, 381–391.PubMedCrossRefGoogle Scholar
  16. Deacon, H.J., and Stephney, I. (2007) HIV/AIDS, stigma and children: a literature review. Cape Town: Human Sciences Research Council.Google Scholar
  17. Deacon, H.J. (2006). Towards a sustainable theory of health-related stigma: lessons from the HIV/AIDS literature. Journal of Community and Applied Social Psychology, 16(6), 418–425.CrossRefGoogle Scholar
  18. Deacon, H.J., Stephney, I., and Prosalendis, S. (2005) HIV/AIDS stigma: a theoretical and methodological review. Cape Town: Human Sciences Research Council.Google Scholar
  19. Dlamini, P., Kohi, T., Uys, L., Phetlhu, R., Chirwa, M., Naidoo, J., Holzemer, W., Greeff, M., and Makoae, L. (2007). Manifestations of HIV/AIDS stigma: verbal and physical and neglect abuse in five African countries. Public Health Nursing, 24(5), 389–399.PubMedCrossRefGoogle Scholar
  20. Doherty, T., Chopra, M., Nkonki, L., Jackson, D., and Greiner, T. (2006). Effect of the HIV epidemic on infant feeding in South Africa: ‘When they see me coming with the tins they laugh at me’. Bulletin of the World Health Organization, 84, 90–96.PubMedCrossRefGoogle Scholar
  21. EngenderHealth (2004). Reducing stigma and discrimination related to HIV and AIDS. Training for health care workers. Washington: EngenderHealth.Google Scholar
  22. Foster, D. (1991). On racism. Inaugural Lecture, University of Cape Town.Google Scholar
  23. Francis, D. (2006). HIVISM: A pervasive system of oppression. Social Work, 40(1), 61–71.Google Scholar
  24. Francis, D., and Francis, E. (2006a). Raising awareness of HIV-related stigma and its associated prejudice and discrimination. South Africa Journal of Higher Education, 20(1), 44–55.Google Scholar
  25. Francis, D., and Francis, E. (2006b) ‘See the Hope’ – using participatory visual arts methods to challenge HIV related stigma. Education as Change, 10(2), 53–65.CrossRefGoogle Scholar
  26. Goffman, E. (1963). Stigma: notes on the management of spoiled identity. New Jersey: Prentice Hall.Google Scholar
  27. Greeff, M., and Phetlhu, D.R. (2007). The meaning and effect of HIV/AIDS stigma for people living with AIDS and nurses involved in their care in the North West Province, South Africa. Curationis, 30(2), 12–23.PubMedCrossRefGoogle Scholar
  28. Greeff, M., Phetlhu, D.R., Makoae, L.N., Dlamini, P.S., Holzemer, W.L., Naidoo, J., Kohi, T.W., Uys, L.R., and Chirwa, M.L. (2008a). Disclosure of HIV status: Experiences and perceptions of persons living with HIV/AIDS and nurses involved in their care in five African countries. Qualitative Health Research, 18(3), 311–324.PubMedCrossRefGoogle Scholar
  29. Greeff, M., Uys, L.R., Holzemer, W.L., Makoae, L.N., Dlamini, P.S., Kohi, T.W., Chirwa, M.L., Naidoo, J., and Phetlhu, D.R. (2008b) Experiences of HIV/AIDS stigma of PLWA and nurses from five African Countries. African Journal of AIDS Research, 10(1), 78–108.Google Scholar
  30. Harrison, A. (2008). Hidden love: sexual ideologies and relationship ideals among rural South African adolescents in the context of HIV/AIDS. Culture, Health & Sexuality, 10, 175–189.CrossRefGoogle Scholar
  31. Herek, G.M. (2002). Thinking about AIDS and stigma: a psychologist’s perspective. Journal of Law, Medicine and Ethics, 30, 594–607.CrossRefGoogle Scholar
  32. Herek G.M., and Glunt, E.K. (1988). An epidemic of stigma: public reactions to AIDS. American Psychologist, 43, 886–891.PubMedCrossRefGoogle Scholar
  33. Holzemer, W.L., Uys, L., Makoae, L., Stewart, A., Phetlhu, R., Dlamini, P., Greeff, M., Kohi, T.W., Chirwa, M., Cuca, Y., and Naidoo, J. (2007a). A conceptual model of HIV/AIDS stigma from five African countries. Journal of Advanced Nursing, 58(6), 541–551.PubMedCrossRefGoogle Scholar
  34. Holzemer, W.L., Uys, L.R., Chirwa, M.L., Greeff, M., Makoae, L.N., Kohi, T.W., Dlamini, P.S., Stewart, A.L., Mullan, J., Phetlhu, R.D., Wantland, D., and Durrheim, K. (2007b) Validation of the HIV/AIDS Stigma Instrument – PLWA (HASI-P). AIDS Care, 19(8), 1002–1012.PubMedCrossRefGoogle Scholar
  35. Hosegood, V., Preston-Whyte, E., Busza, J., Moitse, S., and Timaeus, I.M. (2007). Revealing the full extent of households’ experiences of HIV and AIDS in rural South Africa. Social Science & Medicine, 65, 1249–1259.CrossRefGoogle Scholar
  36. Hutchinson, P.L., and Mahlalela, X. (2006). Utilization of voluntary counseling and testing services in the Eastern Cape, South Africa. AIDS Care, 18, 446–455.PubMedCrossRefGoogle Scholar
  37. International Council of Nurses (2003) Nurses: Fighting AIDS stigma, caring for all. International Council of Nurses, Geneva.Google Scholar
  38. Jennings, R., Mulaudzi, J., Everatt, D., Heywood, M., and Richter, M. (2002). Discrimination and HIV/AIDS. Paper for the Department of Health Strategy & Tactics and the AIDS Law Project. http://alp.org.za.dedi20a.your-server.co.za/images/upload/HIV.AIDSstigma.pdf. Accessed 28 May 2008.
  39. Jewkes, R. (2006). Beyond stigma: social responses to HIV in South Africa. Lancet, 368, 430–431.PubMedCrossRefGoogle Scholar
  40. Joffe, H. (1999). Risk and ‘The other’. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
  41. Kalichman, S.C., and Simbayi, L.C. (2003). HIV testing attitudes, AIDS stigma, and voluntary HIV counselling and testing in a black township in Cape Town, South Africa. Sexually Transmitted Infections, 79, 442–447.PubMedCrossRefGoogle Scholar
  42. Kalichman, S.C., and Simbayi, L. (2004). Traditional beliefs about the cause of AIDS and AIDS-related stigma in South Africa. AIDS Care, 16, 572–580.PubMedCrossRefGoogle Scholar
  43. Kalichman, S.C., Simbayi, L.C., Jooste, S., Toefy, Y., Cain, D., Cherry, C., and Kagee, A. (2005). Development of a brief scale to measure AIDS-related stigma in South Africa. AIDS and Behaviour, 9(2), 135–143.CrossRefGoogle Scholar
  44. Kalichman, S.C., Simbayi, L.C., Cain, D., Jooste, S., Skinner, D., and Cherry, C. (2006). Generalizing a model of health behaviour change and AIDS stigma for use with sexually transmitted infection clinic patients in Cape Town, South Africa. AIDS Care, 18, 178–182.PubMedCrossRefGoogle Scholar
  45. Kelly, M.J. (2005). Stigma, discrimination, HIV and AIDS. Presentation at VSO/RAISA Regional Conference on Stigma and Discrimination.Google Scholar
  46. Kidd, R., Clay, S., Chiiya, C., and Chonta, M. (2007). Understanding and Challenging HIV Stigma: toolkit for action Brighton: International HIV/AIDS Alliance http://www.comminit.com/en/node/267616/347. Accessed 28 May 2008.
  47. Klein, S.J., Karchner, W.J., and O’Connell, D.A. (2002). Interventions to prevent HIV-related stigma and discrimination. Journal of Public Health Management and Practice, 8(6), 44–53.PubMedGoogle Scholar
  48. Kohi, T.W., Makoae, L., Chirwa, M., Holzemer, W.L., Phetlhu, D.R., Uys, L., Naidoo, J., Dlamini, P.S., and Greeff, M. (2006). HIV and AIDS stigma violates human rights in five African countries. Nursing Ethics, 13(4), 404–415.PubMedCrossRefGoogle Scholar
  49. Kouyoumdjian, F.G., Meyers, T., and Mtshizana, S. (2005). Barriers to disclosure to children with HIV. Journal of Tropical Pediatrics, 51, 285–287.PubMedCrossRefGoogle Scholar
  50. Link, B.G., and Phelan, J.C. (2001). On Stigma and its public health implications. Annual Review of Sociology, 27, 363–385.CrossRefGoogle Scholar
  51. Link, B.G., and Phelan, J.C. (2006). Stigma and its public health implications. Lancet, 367, 528–529.PubMedCrossRefGoogle Scholar
  52. MacPhail, C.L., Pettifor, A., Coates, T., and Rees, H. (2008). ‘You must do the test to know your status’: attitudes to HIV voluntary counseling and testing for adolescents among South African youth and parents. Health Education & Behavior, 35, 87–104.CrossRefGoogle Scholar
  53. Makoae, L., Greeff, M., Phethlu, R., Uys, L.R., Naidoo, J.R., Kohi, T., Dlamini, P., Chirwa, M., and Holzemer, W.L. (2008a) Coping strategies for HIV and AIDS: A multinational African Study. Journal of the Association of Nurses in AIDS Care, 19(2), 137–146.PubMedCrossRefGoogle Scholar
  54. Makoae, L.M., Portillo, C.J., Uys, L.R., Dlamini, P.S., Greeff, M., Chirwa, M., Kohi, T.W., Naidoo, J., Mullan, J., Wantland, D., Durrheim, K., and Holzemer, W.L. (In review 2008b). The impact of ARV medication use on perceived HIV stigma in persons living with HIV infection in five African countries.Google Scholar
  55. Mann, J. (1996). The impact of homophobia and other social biases on AIDS. United States of America Public Media Center.Google Scholar
  56. Maughan-Brown, B. (2004). Measuring HIV/AIDS stigma’. CSSR Working Paper No. 74. Centre for Social Science Research, University of Cape Town: Cape Town.Google Scholar
  57. Maughan-Brown, B. (2006a). Attitudes towards people with HIV/AIDS: stigma and its determinants amongst young adults in Cape Town, South Africa. South African Review of Sociology, 37(2), 165–188.CrossRefGoogle Scholar
  58. Maughan-Brown, B. (2006b). Quantifying stigma in the adult population of Cape Town. CSSR Working Paper No. 165. AIDS and Society Research Unit, Centre for Social Science Research, University of Cape Town: Cape Town. http://www.commerce.uct.ac.za/Research_Units/CSSR/pubs_cssr_display.asp. Accessed 28 May 2008.
  59. Maughan-Brown, B. (2007). Experiences and perceptions of HIV/AIDS-related stigma amongst people on antiretroviral treatment in Khayelitsha, South Africa. CSSR Working Paper no.185. AIDS and Society Research Unit, Centre for Social Science Research, University of Cape Town: Cape Town. http://www.commerce.uct.ac.za/Research_Units/CSSR/pubs_cssr_display.asp. Accessed 28 May 2008.
  60. Maughan-Brown, B. (2008). Changes in HIV/AIDS-related stigma in Cape Town, South Africa. Poster presentation, International AIDS conference.Google Scholar
  61. Mills, E.A. (2006). From the physical self to the social body: expressions and effects of HIV-related stigma in South Africa. Journal of Community & Applied Social Psychology, 16, 498–503.CrossRefGoogle Scholar
  62. Moller, V., and Erstad, I. (2007). Stigma associated with tuberculosis in a time of HIV/AIDS: narratives from the Eastern Cape, South Africa. South African Review of Sociology, 38, 103–119.CrossRefGoogle Scholar
  63. Myer, L., Morroni, C., and Cooper, D. (2006). Community attitudes towards sexual activity and childbearing by HIV-positive people in South Africa. AIDS Care, 18, 772–776.PubMedCrossRefGoogle Scholar
  64. Nachega, J.B., Lehman, D.A., Hlatshwayo, D., Mothopeng, R., Chaisson, R.E., and Karstaedt, A.S. (2005). HIV/AIDS and antiretroviral treatment knowledge, attitudes, beliefs, and practices in HIV-infected adults in Soweto, South Africa. Journal of Acquired Immune Deficiency Syndromes (1999), 38, 196–201.CrossRefGoogle Scholar
  65. Naidoo, J.R., Uys, L.R., Greeff, M., Holzemer, W.L., Makoae, L., Dlamini, P., Phetlhu, R.D., Chirwa, M., and Kohi, T. (2007) Urban and rural differences in HIV/AIDS stigma in five African countries. African Journal of AIDS Research, 6(1), 17–23.CrossRefGoogle Scholar
  66. Ndlovu, N. (2005). ‘An exploratory analysis of HIV and AIDS donor funding in South Africa’, IDASA Budget Brief No. 155.Google Scholar
  67. Niehaus, I. (2007). Death before dying: understanding AIDS stigma in the South African Lowveld. Journal of Southern African Studies, 33, 845–860.CrossRefGoogle Scholar
  68. Norman, A., Chopra, M., and Kadiyala, S. (2007). Factors related to HIV disclosure in 2 South African communities. American Journal of Public Health, 97, 1775–1781.PubMedCrossRefGoogle Scholar
  69. Nyblade, L. (2006). Measuring HIV stigma: existing knowledge and gaps. Psychology, Health and Medicine, 11, 335–345.CrossRefGoogle Scholar
  70. Nyblade L., MacQuarrie, K., Fausta, P., et al. (2005). Working report measuring HIV stigma: results of a field test in Tanzania. Washington: USAID.Google Scholar
  71. Ogden, J., and Nyblade, L. (2005). Common at its Core: HIV-Related stigma across contexts. Washington: International Center for Research on Women.Google Scholar
  72. Orner, P. (2006). Psychosocial impacts on caregivers of people living with AIDS. AIDS Care, 18, 236–240.PubMedCrossRefGoogle Scholar
  73. Parker, R., and Aggleton, P. (2003). ‘HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action’. Social Science & Medicine 57, 13–24.CrossRefGoogle Scholar
  74. Parker, R., Oyosi, W., Kelly, K., and Fox, S. (2002). Out on the streets: HIV/AIDS and public transport commuters in SA. Pretoria: Department of Health.Google Scholar
  75. Patient, D.R., and Orr, N.M. (2003). Stigma: beliefs determine behaviour. Unpublished paper.Google Scholar
  76. Peltzer, K., Mosala, T., Shisana, O., Nqueko, A., and Mngqundaniso, N. (2007). Barriers to prevention of HIV transmission from mother to child (PMTCT) in a resource poor setting in the Eastern Cape, South Africa. African Journal Of Reproductive Health, 11, 57–66.PubMedCrossRefGoogle Scholar
  77. Pawinski, R., and Lalloo, U. (2001). Community Attitudes to HIV/AIDS. South African Medical Journal, 91, 448.PubMedGoogle Scholar
  78. Petros, G., Airhihenbuwa, C.O., Simbayi, L., Ramlagan, S., and Brown, B. (2006). HIV/AIDS and ‘othering’ in South Africa: the blame goes on. Culture, Health & Sexuality, 8, 67–77.CrossRefGoogle Scholar
  79. Preston-Whyte, E. (2003). Contexts of vulnerability: sex, secrecy and HIV/AIDS. African Journal of AIDS Research, 2(2), 89–94.CrossRefGoogle Scholar
  80. Richter, M. (2001). Nature and Extent of Discrimination against PLWAs in South Africa: interviews and a study of AIDS Law Project client files 19932001, University of the Witwatersrand: AIDS Law Project, Centre for Applied Legal Studies, 1–46.Google Scholar
  81. Shisana, O., Simbayi, L., et al. (2002). Nelson Mandela/HSRC Study of HIV/AIDS: South African National HIV prevalence, behavioral risks and mass media, household survey 2002. Cape Town: Human Sciences Research Council.Google Scholar
  82. Shisana, O., Hall, E., Maluleke, K.R., Stoker, D.J., Schwabe, C., Colvin M., Chauveau, J., Botha, C., Gumede, T., Fomundam, H., Shaikh, N., Rehle, T., Udjo, E., and Gisselquist, D. (2003). The impact of HIV/AIDS on the health sector: national survey of health personnel, ambulatory and hospitalised patients and health facilities 2002. Cape Town: Human Sciences Research Council.Google Scholar
  83. Shisana, O., Rehle, T., Simbayi, L., Parker, W., Zuma, K., Bhana, A., Connolly, C., Jooste, S., Pillay, V., et al. (2005). South African national HIV prevalence, HIV incidence, behaviour and communication survey, 2005. Cape Town: Human Sciences Research Council.Google Scholar
  84. Siyam’kela Project (2003). Siyam’kela: measuring HIV/AIDS related stigma: HIV/AIDS stigma indicators. Cape Town: POLICY project, Centre for the Study of AIDS, USAID and Department of Health.Google Scholar
  85. Skinner, D., and Mfecane, S. (2004). Stigma, discrimination and the implications for people living with HIV/AIDS in South Africa. Journal of Social Aspects of HIV and AIDS, 1(3), 157–164.Google Scholar
  86. South Africa 2007. Department of Health, HIV and AIDS and STI Strategic Plan for South Africa, 2007–2011. http://www.doh.gov.za/docs/misc/stratplan-f.html. Accessed 3 January 2009.
  87. Stein, J. (2003). HIV/AIDS stigma: The latest dirty secret. African Journal of AIDS Research, 2(2), 95–101.CrossRefGoogle Scholar
  88. Tucker, T.J., and Makgoba, M.W. (2008). Public-private partnerships and scientific imperialism. Science, 320, 1016–1017.PubMedCrossRefGoogle Scholar
  89. Uys L.R. (2003). HIV/AIDS stigma workshop. Pretoria: SANNAMGoogle Scholar
  90. Uys, L.R., Chirwa, M., Dlamini, P., Greeff, M., Kohi, T., Holzemer, W.L., Makoae, L., Naidoo, J.R., and Phetlhu, R. (2005). Eating plastic, winning the lotto, joining the WWW: descriptions of HIV/AIDS in Africa. Journal of the Association of Nurses in AIDS Care. 16(3): 11–21.PubMedCrossRefGoogle Scholar
  91. Uys, L.R., Holzemer, W.L., Chirwa, M.L., Dlamini, P., Greeff, M., Kohi, T.W., Makoae, L.N., Stewart, A.L., Mullan, J., Phetlhu, R.D., Wantland, D., Cuca, Y., and Naidoo, J. (2009). The development and validation of the HIV/AIDS Stigma Instrument-Nurse (HASI-N). AIDS Care, 21(2): 150–159.Google Scholar
  92. Viljoen, F. (Ed.) (2005). Righting stigma: exploring a rights-based approach to addressing stigma. Pretoria: AIDS and Human Rights Research Unit, University of Pretoria.Google Scholar
  93. Visser, M.J., Makin, J.D., and Lehobye, K. (2006). Stigmatizing attitudes of the community towards people living with HIV/AIDS. Journal of Community & Applied Social Psychology, 16, 42–58.CrossRefGoogle Scholar
  94. Whiteside, A., Mattes, R., Willan, S., and Manning, R. (2002). Examining HIV/AIDS in South Africa through the eyes of ordinary South Africans. CSSR Working Paper No. 11. Centre for Social Science Research: University of Cape Town. http://www.commerce.uct.ac.za/Research_Units/CSSR/pubs_cssr_display.asp Accessed 28 May 2008.

Copyright information

© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  • Harriet Deacon
    • 1
  • Leana Uys
    • 2
  • Rakgadi Mohlahlane
    • 3
  1. 1.University of CambridgeCambridgeUK
  2. 2.University of KwaZulu-NatalNatalSouth Africa
  3. 3.Centre for the Study of AIDSUniversity of PretoriaPretoriaSouth Africa

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