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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
DOI
https://doi.org/10.4414/smw.2015.14113
Cite this as:
Swiss Med Wkly. 2015;145:w14113
Published
08.03.2015

Abstract

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.

References

  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: http://www.aidsmap.com/The-diminished-self-HIV-and-self-stigma/page/2657859
  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: http://www.intechopen.com/books/standard-and-innovative-strategies-in-cognitive-behavior-therapy
  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: http://www.jiasociety.org/index.php/jias/article/view/18640
  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.