Disclosure and Stigma: A Cultural Perspective

  • Minrie Greeff


Disclosure or nondisclosure as a phenomenon is complex, with many variants that impact on the process of disclosure, as well as the experiences of the person living with HIV (PLWHA) who discloses his or her HIV status. This complexity lies in the close link between disclosure, stigma, and culture. High stigma levels prevent disclosure, and disclosure practices vary greatly according to cultural practices and beliefs. The choice of disclosure should always be a well informed and responsible decision involving both the PLWHA and health-care workers. Even if the PLWHA is well informed, the results following disclosure are always mixed. However, disclosure by others without the consent of the PLWHA is also a reality that the PLWHA has to face. Most health literature seems to favour disclosure by persons living with HIV. This is not necessarily always to the advantage of the person disclosing his/her status and there could be some normalcy in not disclosing. In this chapter, a comprehensive framework for the HIV disclosure process is provided, focusing on categories of disclosure, factors before disclosure, as well as factors during and after the process of disclosure. Responsible disclosure management is a shared experience between the PLWHA and the health-care workers involved in their care. To conclude this chapter, a practical approach to responsible disclosure management is offered.


Healthcare Worker Disclosure Process Disclosure Rate Collective Society Disclosure Decision 
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. Acevedo, V. (2008). Cultural competence in a group intervention designed for Latino patients living with HIV/AIDS. Health & Social Work, 33(2), 111–120.CrossRefGoogle Scholar
  2. Adedimeji, A. (2010). To tell or not to tell: Managing HIV/AIDS disclosure in a low-prevalence context. Journal of Social Aspects of HIV/AIDS, 7(1), 16–33.CrossRefGoogle Scholar
  3. Allen, M., Timmerman, L., Ksobiech, K., Valde, K., Gallagher, E. B., Hookman, L., Bradford, L., & Emmers-Sommer, T. (2008). Persons living with HIV: Disclosure to sexual partners. Communication Research Reports, 25(3), 192–199.CrossRefGoogle Scholar
  4. Alonzo, A. A., & Reynolds, N. R. (1995). Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory. Social Science & Medicine, 41(3), 303–315.CrossRefGoogle Scholar
  5. Åsander, A.-S., Björkman, A., Belfrage, E., & Faxelid, E. (2009). HIV-infected African parents living in Stockholm, Sweden: Disclosure and planning for their children’s future. Health & Social Work, 14(2), 107–115.CrossRefGoogle Scholar
  6. Babcock, J. H. (1998). Involving family and significant others in acute care. In D. M. Aronstein & B. J. Thompson (Eds.), HIV and social work (pp. 101–108). Binghamton: Harrington.Google Scholar
  7. Benotsch, E. G., Seal, D. W., Stevenson, L. Y., Sitzler, C., Kelly, J. A., Bogart, L. M., & Gore-­Felton, C. (2008). Stigma, AIDS, and HIV prevention in Africa: Reports from community organizations providing prevention services. Journal of Human Behavior in the Social Environment, 18(3), 3329–3348.CrossRefGoogle Scholar
  8. 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.CrossRefGoogle Scholar
  9. Bungener, C., Marchand-Gonod, N., & Jouvent, R. (2000). African and European HIV-positive women: Psychological and psychosocial differences. AIDS Care, 12, 541–548.CrossRefGoogle Scholar
  10. Chandra, P. S., Deepthivarna, S., & Majula, V. (2003). Disclosure of HIV infection in south India: Patterns, reasons and reactions. AIDS Care, 15(2), 207–215.CrossRefGoogle Scholar
  11. DeAlmeida, C. S. (2007). To tell or not to tell: An exploration of HIV stigma and sociocultural factors related to HIV/AIDS disclosure and nondisclosure among Asian and Pacific Islanders. Unpublished Ph.D. dissertation, New School for Social Research, New York.Google Scholar
  12. Delaney, R. O., Serovich, J. M., & Lim, J. Y. (2008). Reasons for and against HIV disclosure to children and perceived child reaction. AIDS Care, 20(7), 876–880.CrossRefGoogle Scholar
  13. Deribe, K., Woldemichael, K., Wondafash, M., Haile, A., & Amberbir, A. (2008). Disclosure experiences and associated factors among HIV positive men and women clinical service users in southwest Ethiopia. BMC Public Health, 8(81), 81–90.CrossRefGoogle Scholar
  14. Deribe, K., Woldemichael, K., Njau, B. J., Yakob, B., Biadgilign, S., & Amberbir, A. (2010). Gender differences regarding barriers and motivators of HIV status disclosure among HIV-­positive service users. Journal of Social Aspects of HIV/AIDS, 7(1), 30–39.CrossRefGoogle Scholar
  15. Derlega, V. J., Winstead, B. A., & Folk-Barron, L. (2000). Reasons for and against disclosing HIV-­seropositive test results to an intimate partner: A functional perspective. In S. Petronia (Ed.), Balancing the secrets of private disclosures (pp. 53–69). Mahwah: Lawrence Erlbaum Associates.Google Scholar
  16. Derlega, V. J., Winstead, B. A., Greene, K., Serovich, J., & Elwood, W. N. (2004). Reasons for HIV disclosure /nondisclosure in close relationships: Testing a model of HIV-disclosure decision making. Journal of Social and Clinical Psychology, 23, 747–767.CrossRefGoogle Scholar
  17. Dodds, C., Keogh, P., & Weatherburn, P. (2004). A telling dilemma. HIV disclosure between male (homosexual) partners. Briefing paper. London: Stigma Research.Google Scholar
  18. Duffy, L. (2005). Suffering, shame, and silence: The stigma of HIV/AIDS. The Journal of the Association of Nurses in AIDS Care, 16(1), 13–20.CrossRefGoogle Scholar
  19. Edwards, L. V. (2006). Perceived social support and HIV/AIDS medication adherence among African American women. Qualitative Health Research, 16(5), 679–691.CrossRefGoogle Scholar
  20. Emlet, C. A. (2006). A comparison of HIV stigma and disclosure patterns between older and younger adults living with HIV/AIDS. AIDS Patient Care and STDs, 20(5), 350–358.CrossRefGoogle Scholar
  21. Gerson, A. C., Joyner, M., Fosarelli, P., Butz, A., Wissow, L., Lee, S., Marks, P., & Hutton, N. (2001). Disclosure of HIV diagnosis to children: When, where, why and how. Journal of Paediatric Health Care, 15(4), 161–167.Google Scholar
  22. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Englewood Cliffs: Prentice-Hall.Google Scholar
  23. Goudge, J., Ngoma, B., Manderson, L., & Sneider, H. (2009). Stigma, identity and resistance among people living with HIV in South Africa. Journal of Social Aspects in HIV/AIDS, 6(3), 94–104.CrossRefGoogle Scholar
  24. Greeff, M. (2010). A comprehensive community-based HIV stigma and wellness enhancement intervention. Unpublished SANPAD research project, North-West University, Potchefstroom.Google Scholar
  25. Greeff, M., Phetlhu, R., Makoae, L. N., Dlmaini, P. S., Holzemer, W. L., Naidoo, J. R., Kohi, T. W., Uys, L. R., & Chirwa, M. L. (2008a). Disclosure of HIV status: Experiences and perceptions of persons living with HIV/AIDS and nurses involved in their care in Africa. Qualitative Health Research, 18(3), 311–324.CrossRefGoogle Scholar
  26. Greeff, M., Uys, L. R., Holzemer, W. L., Makoae, L. N., Dlamini, P. S., Kohi, T. W., Chirwa, M. L., Naidoo, J. R., & Phetlhu, R. D. (2008b). Experiences of HIV/AIDS stigma of persons living with HIV/AIDS and nurses involved in their care from five African countries. Africa Journal of Nursing and Midwifery, 10(1), 78–108.Google Scholar
  27. Greene, K., Derlega, V. J., Yep, A. G., & Petronia, S. (2003). Privacy and disclosure of HIV in interpersonal relationships: A sourcebook for researchers and practitioners. Mahwah: Laurence Erlbaum Associates.Google Scholar
  28. Hadjipateras, A. (2004). Unravelling the dynamics of HIV/AIDS-related stigma discrimination. The role of community-based research: Case studies of Northern Uganda and Burundi. London: Agency for Co-operation and Research Development (ACORD).Google Scholar
  29. Hays, R. B., McKusick, L., Pallack, L., Hilliard, R., Hoff, C., & Coates, T. J. (1993). Disclosing HIV seropositivity to significant other. AIDS, 7, 425–431.CrossRefGoogle Scholar
  30. Herek, G. M., Captanio, 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.CrossRefGoogle Scholar
  31. Hofstede, G. (1980). Cultural consequences. Beverly Hills: Sage.Google Scholar
  32. Holzemer, W. L., & Uys, L. R. (2004). Managing AIDS stigma. SAHARA Journal of Social Aspects of HIV/AIDS, 1(3), 165–174.CrossRefGoogle Scholar
  33. Holzemer, W. L., Makoae, L. N., Greeff, M., Dlamini, P. S., Kohi, T. W., Chirwa, M. L., Naidoo, J. R., Durrheim, K., Cuca, Y., & Uys, L. R. (2009). Measuring HIV stigma for PLHAs and nurses over time in five African countries. Journal of Social Aspects of HIV/AIDS, 6(2), 76–82.CrossRefGoogle Scholar
  34. Idowu, A. F. (2004). Factors associated with disclosure of seropositive status among African American women. Unpublished Ph.D. dissertation, Morgan State University, Baltimore.Google Scholar
  35. Kagitcibasi, C. (1997). Individualism and collectivism. In J. W. Berry, M. H. Segall, & C. Kagitcibasi (Eds.), Handbook of cross-cultural psychology (pp. 1–50). Needham Heights: Allyn & Bacon.Google Scholar
  36. Kalichman, S. C. (1995). Understanding AIDS: A guide for mental health professionals. Washington, DC: American Psychology Association.CrossRefGoogle Scholar
  37. 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), 315–331.CrossRefGoogle Scholar
  38. Kitayama, S., Markus, H. R., Matsumoto, H., & Norasakkunkit, V. (1997). Individual and collective processes in the construction of the self: Self-enhancement in the United States and self-­criticism in Japan. Journal of Personality and Social Psychology, 72, 1245–1267.CrossRefGoogle Scholar
  39. Körner, H. (2007, March–April). Negotiating cultures: Disclosure of HIV-positive status among people from minority ethnic communities in Sydney. Culture, Health & Sexuality, 9(2), 137–152.CrossRefGoogle Scholar
  40. Landau, G., & York, A. (2004). Keeping and disclosing a secret among people with HIV in Israel. Health & Social Work, 29, 116–126.CrossRefGoogle Scholar
  41. Li, L., Sun, S., Wu, S., Lin, C., Wu, Z., & Yan, Z. (2007). Disclosure of HIV status is a family matter: Field notes from China. Journal of Family Psychology, 21(2), 307–314.CrossRefGoogle Scholar
  42. Lu, Y. E., Lum, D., & Chen, S. (2001). Cultural competency and achieving styles in clinical social work practice: A conceptual and empirical exploration. Journal of Ethnic and Cultural Diversity in Social Work, 9(3/4), 1–32.CrossRefGoogle Scholar
  43. Madru, N. (2003). Stigma and HIV: Does the social response affect the natural course of the epidemic? The Journal of the Association of Nurses in AIDS Care, 14(5), 39–48.CrossRefGoogle Scholar
  44. Mahendra, V. S., Gilborn, L., Bharat, S., Mudoi, R., Gupta, I., George, B., Samson, L., Daly, C., & Pulerwitz, J. (2007). Understanding and measuring AIDS-related stigma in health care settings: A developing country perspective. Journal of Social Aspects of HIV/AIDS, 4(2), 616–625.CrossRefGoogle Scholar
  45. Malawi Network of People Living with HIV/AIDS [MANET]. (2003). Voices for equality and dignity: Qualitative research on stigma and discrimination issues as they affect FLWHA in Malawi. Retrieved July 15, 2003, from
  46. Malcolm, A., Aggleton, P., Bronfman, M., Galvao, J., Mane, P., & Verral, J. (1998). HIV-related stigmatization and discrimination: Its forms and contexts. Critical Public Health, 8(4), 347–371.CrossRefGoogle Scholar
  47. Marks, G., Bundek, N. I., Richardson, J. L., Ruiz, M. S., Maldonado, N., & Mason, H. R. C. (1992). Self-disclosure of HIV infection: Preliminary results from a sample of Hispanic men. Health Psychology, 11, 300–306.CrossRefGoogle Scholar
  48. Matthews, A. K., & Peterman, A. H. (1998). Improving provision of effective treatment for racial and cultural minorities. Psychotherapy, 35, 291–304.CrossRefGoogle Scholar
  49. Mitchell, M. M., & Knowlton, A. (2009). Stigma, disclosure, and depressive symptoms among informal caregivers of people living with HIV/AIDS. AIDS Patient Care and STDs, 23(8), 611–617.CrossRefGoogle Scholar
  50. Murphy, D. A., Roberts, K. J., & Hoffman, D. (2006). Young children’s reactions to mothers’ disclosure of maternal HIV+ serostatus. Journal of Child and Family Studies, 15(1), 39–56.CrossRefGoogle Scholar
  51. Muula, A. S., & Mfutso-Bengo, J. M. (2005). When is public disclosure of HIV seropositivity acceptable? Nursing Ethics, 12(3), 288–295.CrossRefGoogle Scholar
  52. Naeem-Sheik, A., & Gray, G. (2005, November). HIV disclosure in children. The Southern African Journal of HIV Medicine, 21, 46–48.Google Scholar
  53. Norman, A., Chopra, M., & Kadiyala, S. (2007). Factors related to HIV disclosure in 2 South African communities. American Journal of Public Health, 97(10), 1775–1781.CrossRefGoogle Scholar
  54. Nöstlinger, C., Jonckheer, T., De Belder, E., Van Wijngaerden, E., Wylock, C., Pelgrom, J., & Colebunders, R. (2004). Families affected by HIV: Parents’ and children’s characteristics and disclosure to children. AIDS Care, 16(5), 641–648.CrossRefGoogle Scholar
  55. Nyblade, L. (2003). Disentangling HIV and AIDS stigma. Overview of findings from a two year study in Ethiopia, Tanzania and Zambia. Retrieved November 10, 2004, from
  56. Ostrom, R. A., Serovich, J. Y., & Mason, T. L. (2006). The role of stigma in reasons for HIV disclosure and non-disclosure to children. AIDS Care, 18(1), 60–65.CrossRefGoogle Scholar
  57. Paxton, S. (2002). The paradox of public HIV disclosure. AIDS Care, 14(4), 559–567.CrossRefGoogle Scholar
  58. Petrak, J. A., Doyle, A.-M., Smith, A., Skinner, C., & Hedge, B. (2001). Factors associated with self-disclosure of HIV serostatus to significant others. British Journal of Health Psychology, 6, 69–79.CrossRefGoogle Scholar
  59. Petronio, S. (2002). Boundaries of privacy: Dialectics of disclosure. Albany: State University of New York.CrossRefGoogle Scholar
  60. Sandelowski, M., Lambe, C., & Barroso, J. (2004). Stigma in HIV-positive women. Journal of Nursing Scholarship, 36(2), 122–128.CrossRefGoogle Scholar
  61. Schwartz, S. H. (1999). A theory of cultural values and some implications for work. Applied Psychology: An International Review, 48, 23–27.CrossRefGoogle Scholar
  62. Serovich, J. M. (2001, August). A test of two HIV disclosure theories. AIDS Education and Prevention, 13(4), 355–364.CrossRefGoogle Scholar
  63. Serovich, J. M., Craft, S. M., & Yoon, H.-J. (2007). Women’s HIV disclosure to immediate family. AIDS Patient Care and STDs, 21(12), 970–979.CrossRefGoogle Scholar
  64. Shaffer, A., Jones, D. J., Kotchick, B. A., Forehand, R., & The Family Health Project Research Group. (2001). Journal of Child and Family Studies, 10(3), 301–313.CrossRefGoogle Scholar
  65. Siyam’kela. (2003). A report on the fieldwork leading to the development of HIV/AIDS stigma indicators and guidelines. POLICY Project, South Africa; Centre for the Study of AIDS, University of Pretoria; Chief Directorate: HIV, AIDS & TB, Department of Health, Washington, DC, USA.Google Scholar
  66. Smith, R. A., & Morrison, D. (2006). The impact of stigma, experience and group referent on HIV risk assessments and HIV testing intentions in Namibia. Social Science & Medicine, 63, 2649–2660.CrossRefGoogle Scholar
  67. Smith, R., Rosetto, K., & Peterson, B. L. (2008). A meta-analysis of disclosure of one’s HIV-­positive status, stigma and social support. AIDS Care, 20(10), 1266–1275.CrossRefGoogle Scholar
  68. Sowell, R. L., Lowenstein, A., Moneyham, L., Demi, A., Mizuno, Y., & Seals, B. F. (1997). Resources, stigma, and patterns of disclosure in rural women with HIV infection. Public Health Nursing, 14(5), 302–312.CrossRefGoogle Scholar
  69. Spector, R. E. (2004). Culture care guide to heritage assessment and health traditions. Upper Saddle River: Pearson Prentice Hill.Google Scholar
  70. Stephenson, R. (2009). Community factors shaping HIV-related stigma among young people in three African countries. AIDS Care, 21(4), 403–410.CrossRefGoogle Scholar
  71. Stewart, W. T., Herek, G. M., Ramakrishna, J., Bharat, S., Chandy, S., Wrubel, J., & Ekstrand, M. L. (2008). HIV-related stigma: Adapting a theoretical framework for use in India. Social Science & Medicine, 67, 1225–1235.CrossRefGoogle Scholar
  72. Sullivan, K. (2009). Male self-disclosure of HIV infection to sex partners: A Hawaii-based sample. The Journal of the Association of Nurses in AIDS Care, 20(6), 442–457.CrossRefGoogle Scholar
  73. Tompkins, T. L. (2007). Disclosure of maternal HIV status to children: To tell or not to tell…That is the question. Journal of Child and Family Studies, 16, 773–788.CrossRefGoogle Scholar
  74. Triandis, H. C. (1989). The self and social behavior in differing cultural contexts. Psychology Review, 96, 506–520.CrossRefGoogle Scholar
  75. Triandis, H. C. (1995). Individualism and collectivism. Boulder: Westview Press.Google Scholar
  76. Triandis, H. C. (2000). Cultural syndrome and subjective well-being. In E. Diener & M. Suh (Eds.), Culture and subjective well-being (pp. 13–36). Cambridge, MA: Bradford Book.Google Scholar
  77. Triandis, H. C., Bontempo, R., Vallareal, M. J., Asai, M., & Lucca, N. (1988). Individualism and collectivism: Cross-cultural perspectives on self-ingroup relationships. Journal of Personality and Social Psychology, 54, 323–338.CrossRefGoogle Scholar
  78. Van Servellen, G., Carpio, F., Lopez, M., Gracia-Teague, L., Herrera, G., Monterrosa, F., Gomez, R., & Lombardi, E. (2003). Program to enhance health literacy and treatment adherence in low-­income HIV-infected Latino men and women. AIDS Patient Care and STDs, 17, 581–594.CrossRefGoogle Scholar
  79. Vira, R. (2003). Cross-cultural study on HIV-positive Indian and American men on disclosure, perceived social support and psychological well-being: Implications for marriage and family therapists. Unpublished PhD dissertation, Graduate School, The Ohio State University, Columbus.Google Scholar
  80. Weiss, M. G., & Ramakrishna, J. (2001). Stigma interventions and research for international health. Retrieved February 21, 2003, from http//
  81. World Health Organization. (1999). Questions and answers on reporting, partner notification and disclosure of HIV serostatus and/or AIDS: Public health and human rights implications. Geneva: World Health Organization.Google Scholar
  82. Worth, H., Reid, A., Ackroyd, J., & Tamirate-Bowden, E. (2001). Silence and secrecy: Refugee experiences of HIV in New Zealand. Auckland: Institute for Research on Gender, University of Auckland.Google Scholar
  83. Wouter, E., van Loon, F., van Rensburg, D., & Meulemans, H. (2009). Community support and disclosure of HIV serostatus to family members by public-sector antiretroviral treatment patient in the Free State province of South Africa. AIDS Patient Care and STDs, 23(5), 357–364.CrossRefGoogle Scholar
  84. Yoshioka, M. R., & Schustack, A. (2001). Disclosure of HIV status: Cultural issues of Asian patients. AIDS Patient Care and STDs, 15(2), 77–82.CrossRefGoogle Scholar
  85. Zea, M. A., Reisen, C. A., Poppen, P. J., Echeverry, J. J., & Bianchi, F. T. (2005). Disclosure of HIV status and psychological well-being among Latino gay and bisexual men. AIDS and Behavior, 9, 15–26.CrossRefGoogle Scholar
  86. Zou, J., Yamanaka, Y., John, M., Watt, M., Ostermann, J., & Thielman, N. (2009). Religion and HIV in Tanzania: Influence of religious beliefs on HIV stigma, disclosure, and treatment attitudes. BMC Public Health, 9(75), 75–86.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2013

Authors and Affiliations

  1. 1.Africa Unit for Trans-Disciplinary Health Research (AUTHeR), Faculty of Health SciencesNorth-West UniversityPotchefstroomSouth Africa

Personalised recommendations