Experiences of People Living with HIV

  • Lumka Daniel
  • Corinne Squire


This chapter reviews research on experiences of people living with HIV in South Africa, and suggests that in addition, poetry, fiction, visual arts, music, autobiography and documentary are crucial to understanding HIV experiences (Cameron, 2005; Dangaremgba, 1996; Health and Development Africa/Soul City, 2007). Research on HIV experience needs to include not just statistical and qualitative studies, but also writing and images by and about people with faces and names whose lives have been changed by the epidemic.


Interpretive Community Treatment Action Campaign Narrative Genre Reciprocal Love AIDS Denialism 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


  1. Abdool Kareem, S.S., (2005). HIV/AIDS in South Africa. Cambridge: Cambridge University Press.Google Scholar
  2. Boulle, A., Bock, P., Osler, M., Cohen, K., Channing, L., Hilderbrand, K., Mothibi, E., Zweigenthal, V., Slingers, N., Cloete, K., and Abdullah, F. (2008). Antiretroviral therapy and early mortality in South Africa. Bulletin of the World Health Organisation 86.Google Scholar
  3. Brandt, R. (2004). Is it all chaos, loss and disruption? The narratives of poor, HIV positive South African women. Cape Town: Centre for Social Science Research Working Paper No.224Google Scholar
  4. Cameron, E. (2005). Witness to AIDS. London: IB TaurisGoogle Scholar
  5. Campbell, C., Nair, Y., Maimane, S., and Sibiya, Z. (2007). Building contexts that support effective community responses to HIV/AIDS. American Journal of Community Psychology. 39(3–4), 347–363.PubMedCrossRefGoogle Scholar
  6. Carricaaburu, D., and Pierret, J. (1995). From biographical disruption to biographical reinforcement: the case of HIV and men. Sociology of Health and Illness, 17, 65–88.CrossRefGoogle Scholar
  7. Ciambrone, D. (2001). Illness and other assaults on self: The relative impacts of HIV/AIDS on women’s lives. Sociology of Health and Illness, 23, 517–40.CrossRefGoogle Scholar
  8. Dangaremgba,T. (1996). Everyone’s child. Harare: Media for Development Trust.Google Scholar
  9. Epstein, H. (2006). The invisible cure. New York: Farrar, Straus and Giroux.Google Scholar
  10. Ezzy, D. (2000). Illness narrative: time, hope and HIV. Social Science and Medicine, 50, 605–17.PubMedCrossRefGoogle Scholar
  11. Farmer, P. (1999). Infections and Inequalities. Berkeley, CA: University of California Press.Google Scholar
  12. Flisher, A., Mathews, C., Mukoma, W., and Lombard, C. (2006). Secular trends in risk behaviour of Cape Town grade 8 Students. South African Journal of Medicine, 96, 982–987.Google Scholar
  13. Flowers, P. (2009). HIV transitions: Diagnosis, identity and embodiment. In M. Davis, and C. Squire (Eds.), HIV Technologies. London: Palgrave.Google Scholar
  14. Flowers, P., Davis, M., Hart, G., Rosengarten, M., Frankis, J., and Imrie, J. (2006). Diagnosis and stigma and identity amongst HIV positive Black Africans living in the UK Psychology and Health, 21(1), 109–122.Google Scholar
  15. Guzuna, Z. (2000). Exploring women’s silence in isiXhosa written and oral literature. Agenda, 46, 75–81.CrossRefGoogle Scholar
  16. Health and Development Africa/Soul City. (2007). Soul City – It’s Real. Evaluation Report, Series 7.Google Scholar
  17. Joffe, H. (1997). The relationship between representationalist and materialist perspectives: AIDS and ‘the other’. In L. Yardley (Ed.), Material discourses of health and illness. London: Routledge.Google Scholar
  18. Joffe, H., and Bettega, N. (2003). Social representation of AIDS among Zambian adolescents. Journal of Health Psychology, 8, 616–31.PubMedCrossRefGoogle Scholar
  19. Iliffe, J. (2006). The African AIDS epidemic: A history. Athens, OH: Ohio University Press.Google Scholar
  20. Kaleeba, N., Kalibala, S., Kaseje, M., Ssebbanja, P., Anderson, S., Van Praag, E., Tembo, G., and Katabira, E. (1997). Participatory evaluation of counselling, medical and social services of the AIDS Support Organisation (TASO) in Uganda. AIDS Care, 9(1), 13–2.PubMedCrossRefGoogle Scholar
  21. Kristeva. J. (1984) Powers of horror. New York: Columbia University PressGoogle Scholar
  22. Mazibuko, L. (2008a). Refusing to forgive adds more misery to life. Sowetan June 4. Online http://www.sowetan.co.za/Columnists/LuckyMazibuko/Article.aspx?id=778376Accessed 20.11.08
  23. Mazibuko. L. (2008b). Address the people’s needs. Sowetan November 5. Online http://www.sowetan.co.za/Columnists/LuckyMazibuko/Article.aspx?id=877700Accessed 20.11.08
  24. Mbali, M. (2003). HIV/AIDS policy-making in post-apartheid South Africa. In J. Daniel, A. Habib, and R. Southall (Eds), State of the Nation: South Africa 2003–2004. Cape Town: HSRC Press.Google Scholar
  25. Mbali, M. (2005). The Treatment Action Campaign and the history of rights based patient-driven HIV/Aids activism in South Africa. Centre for Civil Society Research Report 29: 1–23.Google Scholar
  26. Mouffe, C. (2005). The return of the political. London: Verso.Google Scholar
  27. Lombardozzi, L. (2006) An introduction to the poetry of Lewis Nkosi. In L. Steibel and L. Gunner (Eds.), Still beating the drum: Critical perspectives on lewis nkosi. Johannesburg: Wits University PressGoogle Scholar
  28. Olley, B., Zeier, M., Seedat, S., and Stein, D. (2005). Post-traumatic stress disorder among recently diagnosed patients with HIV/AIDS in South Africa. AIDS Care, 17(5), 550–7.PubMedCrossRefGoogle Scholar
  29. Plummer, K. (1995). Telling sexual stories. London: Sage.CrossRefGoogle Scholar
  30. Plummer, K. (2001). Documents of life 2. London: Routledge.Google Scholar
  31. Robins, S. (2004). ‘Long live Zackie, long live!’ AIDS activism, science and citizenship after apartheid. Journal of Southern African Studies, 30(3), 651–72.CrossRefGoogle Scholar
  32. Rohleder, P. (2007) HIV and the ‘Other.’ Psychodynamic Practice 13(4): 401–412CrossRefGoogle Scholar
  33. Scott, J. (1990) ‘The evidence of experience’. Critical Inquiry 17(4): 773–797.CrossRefGoogle Scholar
  34. Squire, C. (1999). ‘Neighbors who might become friends’: Selves, genres and citizenship in stories of HIV. The Sociological Quarterly, 40(11): 109–137.CrossRefGoogle Scholar
  35. Squire, C, (2003). ‘Can an HIV positive woman find true love? Romance in the stories of women living with HIV.’ Feminism and Psychology, 13(1): 73–100.CrossRefGoogle Scholar
  36. Squire, C, (2007), HIV in South Africa: talking about the big thing. London: Routledge.Google Scholar
  37. UNAIDS. (2008). Report on the global AIDS epidemic. Online http://www.unaids.org/en/KnowledgeCentre/HIVData/GlobalReport/2008/2008_Global_report.asp. Accessed 20.02.09
  38. Uys, P. (2003). Elections and erections: A memoir of fear and fun. South Africa: Zebra Press.Google Scholar
  39. Young, I. (1990). Justice and the politics of difference. Princeton, NJ: Princeton University Press.Google Scholar

Copyright information

© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  • Lumka Daniel
    • 1
  • Corinne Squire
    • 2
  1. 1.Organisational Development Consultant, Parliament of the Republic of South AfricaCape TownSouth Africa
  2. 2.Narrative Research at the University of East London.NarrativeLondon

Personalised recommendations