Skip to main navigation menu Skip to main content Skip to site footer

Original article

Vol. 145 No. 1112 (2015)

“An unspoken world of unspoken things”: a study identifying and exploring core beliefs underlying self-stigma among people living with HIV and AIDS in Ireland

  • Nadine Ferris France
  • Steve McDonald
  • Ronan R Conroy
  • Elaine Byrne
  • Chris Mallouris
  • Ian Hodgson
  • Fiona Larkan
Cite this as:
Swiss Med Wkly. 2015;145:w14113


PRINCIPLES: Human immunodeficiency virus (HIV) related self-stigma – negative self-judgements resulting in shame, worthlessness and self-blame – negatively influences access to care and treatment, and overall quality of life for people living with HIV (PLHIV). Despite evidence that high levels of self-stigma exist among PLHIV, and is experienced to a far greater extent than stigma received from the broader community, there is a paucity of research aimed at understanding causes and functions of self-stigma, and an absence of interventions to mitigate its harmful effects. Understanding the core beliefs underlying self-stigma is therefore essential.

METHODS: This pilot study used a qualitative approach to analyse interviews and written statements to uncover core beliefs underlying self-stigma, the functions thereof, and strategies used to overcome it, among a heterogeneous group of PLHIV in Ireland.

RESULTS: Core beliefs underlying HIV-related self-stigma were uncovered and grouped into four categories: disclosure; sexuality and sexual pleasure; self-perception; and body, illness and death. Reported functions of self-stigma included contributing to maintaining a “victim” status; providing protection against stigma received from others; and justifying non-disclosure of HIV status. To cope with self-stigma, participants highlighted: community involvement and professional development; personal development; and connection to others and sense of belonging. Findings were also used to create a conceptual framework.

CONCLUSIONS: This study helps fill identified gaps in knowledge about self-stigma as experienced by PLHIV. By understanding the core beliefs driving self-stigma, it will be possible to create targeted interventions to challenge and overcome such beliefs, supporting PLHIV to achieve improved wellbeing and lead productive lives free of self-limitation and self-judgement.


  1. Nakagawa F, Lodwick RK, Smith CJ, Smith R, Cambiano V, Lundgren JD, et al. Projected life expectancy of people with HIV according to timing of diagnosis. AIDS Lond Engl. 2012;26(3):335–43.
  2. Parker R, Aggleton P, Attawell K, Pulerwitz J, Brown L. HIV/AIDS-related Stigma and Discrimination: A Conceptual Framework and an Agenda for Action. New York: The Population Council; 2002.
  3. 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.
  4. 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.
  5. Health Services Executive Health Protection Surveillance Centre (HPSC). HIV in Ireland 2011 Report. Dublin: Government of Ireland Health Services Executive; 2012.
  6. Stamp Out Stigma Campaign. HIV-Related stigma and discrimination in Ireland today. Dublin: Government of Ireland Department of Health; 2007.
  7. Kalichman SC, Simbayi LC, Cloete A, Mthembu PP, Mkhonta RN, Ginindza T. Measuring AIDS stigmas in people living with HIV/AIDS: the Internalized AIDS-Related Stigma Scale. AIDS Care. 2009;21(1):87–93.
  8. Scambler G, Hopkins A. Being epileptic: coming to terms with stigma. Sociol Health Illn. 1986;8(1):26–43.
  9. Robertson M, Katona C. Depression and physical illness: perspectives in psychiatry. Chichester: Wiley; 1997.
  10. Ablon J. The nature of stigma and medical conditions. Epilepsy Behav EB. 2002;3(6S2):2–9.
  11. Jamison KR. The many stigmas of mental illness. Lancet. 2006;367(9509):533–4.
  12. Global Network of People Living with HIV (GNP+), International Community of Women Living with HIV/AIDS (ICW Global), International Planned Parenthood Federation (IPPF), Joint United Nations Programme on HIV/AIDS (UNAIDS). People living with HIV stigma index: Asia Pacific Regional Analysis 2011. Bangkok: UNAIDS; 2011.
  13. 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, South Africa. Soc Sci Med. 1982. 2007;64(9):1823–31.
  14. Wight RG. Precursive depression among HIV infected AIDS caregivers over time. Soc Sci Med. 1982. 2000;51(5):759–70.
  15. Health and Development Networks (HDN). Living on the outside: Key findings and recommendations on the nature and impact of HIV/AIDS-related stigma. Chiang Mai: Health and Development Networks; 2006.
  16. Earnshaw VA, Quinn DM. The impact of stigma in healthcare on people living with chronic illnesses. J Health Psychol. 2012;17(2):157–68.
  17. Cairns G. Issue 215: Spring 2013 – The diminished self – HIV and self-stigma [Internet]. NAM AIDSMap. 2013 [cited 2014 Jun 5]. Available from:
  18. Demchenko I, Sosidko T, Kostyuchok M, Belonosova N, Salabai N, Hvozdetska O, et al. People living with HIV stigma index Ukraine: Analytical report based on research findings. Kiev: All-Ukranian Network of People Living With HIV/AIDS; 2011.
  19. Association des Veuves Vulnerables Affectees et Infectees par le HIV/AIDS (AVVAIS), Conseil Nationale de Lutte Contre le Sida (CNLS), Rwanda Network of People Living with HIV/AIDS (RRP+), Joint United Nations Programme on HIV/AIDS (UNAIDS). People living with HIV stigma index: Rwandan stigma and discrimination survey report. Kigali: AVVAIS; 2009.
  20. Myanmar Positive Group (MPG), MMRD Research Group, Joint United Nations Programme on HIV/AIDS (UNAIDS). People living with HIV stigma index: Myanmar. Yangon: UNAIDS; 2010.
  21. Network of Networks of HIV Positives in Ethiopia (NEP+), Joint United Nations Programme on HIV/AIDS (UNAIDS), Global Network of People Living with HIV (GNP+), International Planned Parenthood Federation (IPPF), Catholic Organisation for Relief and Development Aid (CORDAID), UKAID. People living with HIV stigma index: Ethiopia stigma and discrimination report. Addis Ababa: Network of Networks of HIV Positives in Ethiopia (NEP+); 2011.
  22. Network of Zambian People Living with HIV/AIDS (ZNP+), Global Network of People Living with HIV (GNP+), UKAID. People Living with HIV stigma index: Zambia. Lusaka: Network of Zambian People Living with HIV/AIDS; 2012.
  23. Kalichman SC, Simbayi LC, Jooste S, Toefy Y, Cain D, Cherry C, et al. Development of a brief scale to measure AIDS-related stigma in South Africa. AIDS Behav. 2005;9(2):135–43.
  24. Goffman E. Stigma: notes on the management of spoiled identity. Englewood Cliffs, N.J.: Prentice-Hall; 1963.
  25. Link BG, Phelan JC. Conceptualizing Stigma. Annu Rev Sociol. 2001;27(1):363–85.
  26. Link BG, Struening EL, Rahav M, Phelan JC, Nuttbrock L. On stigma and its consequences: evidence from a longitudinal study of men with dual diagnoses of mental illness and substance abuse. J Health Soc Behav. 1997;38(2):177–90.
  27. Beck JS. Cognitive Behavior therapy: Basics and beyond. 2nd ed. New York: Guildford Press; 2011.
  28. Wenzel A. Modification of Core Beliefs in Cognitive Therapy. In: Reis de Oliviera I, editor. Standard and Innovative Strategies in Cognitive Behavior Therapy [Internet]. InTech; 2012 [cited 2014 Sep 30]. Available from:
  29. Sengupta S, Banks B, Jonas D, Miles MS, Smith GC. HIV interventions to reduce HIV/AIDS stigma: a systematic review. AIDS Behav. 2011;15(6):1075–87.
  30. Kalichman SC, Simbayi L. Traditional beliefs about the cause of AIDS and AIDS-related stigma in South Africa. AIDS Care. 2004;16(5):572–80.
  31. Brown JL, Vanable PA. Stress management interventions for HIV-infected individuals: review of recent intervention approaches and directions for future research. Neurobehav HIV Med. 2011;95.
  32. Katie B, Mitchell S. Loving what is: Four questions that can change your life. New York: Harmony Books; 2002.
  33. Katie B, Mitchell S. A Thousand Names for Joy: Living in Harmony with the Way Things Are. New York: Harmony Books; 2007.
  34. Lev-ari S, Zilcha-Mano S, Rivo L, Geva R, Ron I. A prospective pilot clinical trial of “The work” meditation technique for survivors of breast cancer. Eur J Integr Med. 2013;5(6):487–94.
  35. Hayes C. Clinical Pyschology: A psychoeducational cognitive behavioural approach to helping people cope. In: Devonport TJ, editor. Managing stress: From theory to application. Hauppage, NY: Nova Science Publishers; 2012. p. 229–60.
  36. Williams C, Garland A. A cognitive–behavioural therapy assessment model for use in everyday clinical practice. Adv Psychiatr Treat. 2002;8(3):172–9.
  37. 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.
  38. Poku KA, Linn JG, Fife BL, Azar S, Kendrick L. A comparative analysis of perceived stigma among HIV-positive Ghanaian and African American males. SAHARA J J Soc Asp HIVAIDS Res Alliance SAHARA Hum Sci Res Counc. 2005;2(3):344–51.
  39. Holzemer WL, Uys L, Makoae L, Stewart A, Phetlhu R, Dlamini PS, et al. A conceptual model of HIV/AIDS stigma from five African countries. J Adv Nurs. 2007;58(6):541–51.
  40. Silverman D. Doing qualitative research: A practical handbook. London: Sage; 2000.
  41. Nyblade LC. Measuring HIV stigma: existing knowledge and gaps. Psychol Health Med. 2006;11(3):335–45.
  42. Petrak JA, Doyle AM, Smith A, Skinner C, Hedge B. Factors associated with self-disclosure of HIV serostatus to significant others. Br J Health Psychol. 2001;6(Pt 1):69–79.
  43. Parker R, Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med. 1982. 2003;57(1):13–24.
  44. Medley AM, Kennedy CE, Lunyolo S, Sweat MD. Disclosure outcomes, coping strategies, and life changes among women living with HIV in Uganda. Qual Health Res. 2009;19(12):1744–54.
  45. Steward WT, Herek GM, Ramakrishna J, Bharat S, Chandy S, Wrubel J, et al. HIV-related stigma: adapting a theoretical framework for use in India. Soc Sci Med. 1982. 2008;67(8):1225–35.
  46. Brouard P, Willis C. A closer look: The internalization of stigma related to HIV. Washington: POLICY Project; 2006.
  47. Golden J, Conroy RM, O’Dwyer AM, Golden D, Hardouin J-B. Illness-related stigma, mood and adjustment to illness in persons with hepatitis C. Soc Sci Med. 1982. 2006;63(12):3188–98.
  48. Link BG, Phelan JC. Stigma and its public health implications. Lancet. 2006;367(9509):528–9.
  49. Malta M, Petersen ML, Clair S, Freitas F, Bastos FI. Adherence to antiretroviral therapy: a qualitative study with physicians from Rio de Janeiro, Brazil. Cad Saúde Pública. 2005 Oct;21(5):1424–32.
  50. Katz IT, Ryu AE, Onuegbu AG, Psaros C, Weiser SD, Bangsberg DR, et al. Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis. J Int AIDS Soc. [Internet]. 2013[cited 2014 Sep 19];16(3(Suppl 2)). Available from:
  51. Mburu G, Ram M, Skovdal M, Bitira D, Hodgson I, Mwai GW, et al. Resisting and challenging stigma in Uganda: the role of support groups of people living with HIV. J Int AIDS Soc. 2013;16(Suppl. 2):18636.
  52. Morrison K. Breaking the cycle: Stigma, discrimination, internal stigma, and HIV. Washington, DC: USAID; 2006.