Top

BMC Public Health

Published in:

Open Access 01-12-2021 | Human Immunodeficiency Virus | Research article

HIV-related stigma in the UK then and now: to what extent are we on track to eliminate stigma? A qualitative investigation

Authors: Barbara Hedge, Karrish Devan, Jose Catalan, Anna Cheshire, Damien Ridge

Published in: BMC Public Health | Issue 1/2021

Abstract

Background

The introduction of effective antiretroviral treatment in the late 1990s led to the perception that HIV was a chronic but manageable condition. Nevertheless, stigma remains one of the major hurdles for people living with HIV (PLWH) to accessing healthcare and biomedical preventions. Thus, Fast Track Cities has set a target of zero HIV discrimination by 2030 as part of its strategy to end HIV transmission.

Methods

Fifty-three participants from the United Kingdom, including PLWH (n = 21, 40%), health and social care workers (n = 24, 45%), and charity workers and activists (n = 13, 25%), were recruited. Semi-structured interviews investigated stigma and discrimination, focusing on both before and after the widespread use of effective antiretroviral treatment in the late 1990s. Data were analysed using a thematic approach.

Results

Before effective antiretroviral treatment narratives were shaped by two main themes: 1) the media’s role in influencing public opinion and contributing to misunderstandings of HIV transmission; and 2) personal experiences of HIV-related stigma, which for PLWH included incidents of physical violence and aggression, as well as fears of their HIV status being publicised. Contemporary narratives on stigma experiences were organised around four themes: 1) discrimination in healthcare settings; 2) stigma amongst men who have sex with men (MSM); 3) stigma towards African and Afro-Caribbean PLWH; and 4) the limits of change in public HIV-related knowledge and attitudes. Contemporary narratives indicated a reduction in enacted stigma, but continued anticipation of discrimination and self-reported shame, particularly in MSM and African and Afro-Caribbean PLWH.

Conclusion

The nature of stigma against those with HIV has evolved. The intersection of PLWH and minority groups (e.g. MSM and African and Afro-Caribbean persons) may enhance anticipatory and internalised stigma, with some suggestion that this may contribute to reduced engagement in HIV care and prevention services. Our findings indicate the need for further research in this area, as well as proactive interventions with community groups to enhance knowledge of HIV.

Available only for authorised users

Goffman E. Stigma: Notes on the management of spoiled identity. Cliffs: Prentice-Hall; 2009.

Earnshaw VA, Chaudoir SR. From conceptualizing to measuring HIV stigma: a review of HIV stigma mechanism measures. AIDS Behav. 2009;13(6):1160–77. https://doi.org/10.1007/s10461-009-9593-3.CrossRefPubMedPubMedCentral

Earnshaw VA, Smith LR, Chaudoir SR, Amico KR, Copenhaver MM. HIV stigma mechanisms and well-being among PLWH: a test of the HIV stigma framework. AIDS Behav. 2013;17(5):1785–95. https://doi.org/10.1007/s10461-013-0437-9.CrossRefPubMedPubMedCentral

Turan B, Budhwani H, Fazeli PL, Browning WR, Raper JL, Mugavero MJ, et al. How does stigma affect people living with HIV? The mediating roles of internalized and anticipated HIV stigma in the effects of perceived community stigma on health and psychosocial outcomes. AIDS Behav. 2017;21(1):283–91. https://doi.org/10.1007/s10461-016-1451-5.CrossRefPubMedPubMedCentral

Mann JM. Statement at an informal briefing on AIDS to the 42nd session of the United Nations general assembly. J R Stat Soc A (Stat Soc). 1988;151(1):131–6. https://doi.org/10.2307/2982189.CrossRef

Herek GM, Capitanio JP, Widaman KF. HIV-related stigma and knowledge in the United States: prevalence and trends, 1991–1999. Am J Public Health. 2002;92(3):371–7. https://doi.org/10.2105/AJPH.92.3.371.CrossRefPubMedPubMedCentral

Warwick I, Aggleton P, Homans H. Constructing commonsense—young people's beliefs about AIDS. Sociol Health Illn. 1988;10(3):213–33. https://doi.org/10.1111/1467-9566.ep11340140.CrossRef

Stipp H, Kerr D. Determinants of public opinion about AIDS. Public Opin Q. 1989;53(1):98–106. https://doi.org/10.1086/269143.CrossRef

Vass AA. AIDS: a plague in Us: a social perspective. St Ives, Cambs: Venus Academica; 1986.

10.

Wellings K. Perceptions of risk - media treatment of AIDS. In: Aggleton P, Homans H, editors. Social aspects of AIDS. Lewes: The Falmer Press; 1988.

11.

Herek GM. Illness, stigma, and AIDS. In: VandenBos GR, editor. Psychological aspects of serious illness. Washington, DC: American Psychological Association; 1996. https://doi.org/10.1037/10076-003.CrossRef

12.

Eisinger RW, Dieffenbach CW, Fauci AS. HIV viral load and transmissibility of HIV infection: undetectable equals untransmittable. JAMA. 2019;321(5):451–2. https://doi.org/10.1001/jama.2018.21167.CrossRefPubMed

13.

Elford J, Ibrahim F, Bukutu C, Anderson J. HIV-related discrimination reported by people living with HIV in London, UK. AIDS Behav. 2008;12(2):255–64. https://doi.org/10.1007/s10461-007-9344-2.CrossRefPubMed

14.

Sayles JN, Wong MD, Kinsler JJ, Martins D, Cunningham WE. The association of stigma with self-reported access to medical care and antiretroviral therapy adherence in persons living with HIV/AIDS. J Gen Intern Med. 2009;24(10):1101–8. https://doi.org/10.1007/s11606-009-1068-8.CrossRefPubMedPubMedCentral

15.

Holzemer WL, Uys LR. Managing AIDS stigma. SAHARA-J. 2004;1(3):165–74. https://doi.org/10.1080/17290376.2004.9724839.CrossRefPubMed

16.

Logie C, Gadalla T. Meta-analysis of health and demographic correlates of stigma towards people living with HIV. AIDS Care. 2009;21(6):742–53. https://doi.org/10.1080/09540120802511877.CrossRefPubMed

17.

Lee RS, Kochman A, Sikkema KJ. Internalized stigma among people living with HIV-AIDS. AIDS Behav. 2002;6(4):309–19. https://doi.org/10.1023/A:1021144511957.CrossRef

18.

Vanable PA, Carey MP, Blair DC, Littlewood RA. Impact of HIV-related stigma on health behaviors and psychological adjustment among HIV-positive men and women. AIDS Behav. 2006;10(5):473–82. https://doi.org/10.1007/s10461-006-9099-1.CrossRefPubMedPubMedCentral

19.

Green G, Platt S. Fear and loathing in health care settings reported by people with HIV. Sociol Health Illn. 1997;19(1):70–92.CrossRef

20.

Marshall AS, Brewington KM, Kathryn Allison M, Haynes TF, Zaller ND. Measuring HIV-related stigma among healthcare providers: a systematic review. AIDS Care. 2017;29(11):1337–45. https://doi.org/10.1080/09540121.2017.1338654.CrossRef

21.

Zarei N, Joulaei H, Darabi E, Fararouei M. Stigmatized attitude of healthcare providers: a barrier for delivering health services to HIV positive patients. Int J Community Based Nurs Midwifery. 2015;3(4):292–300.PubMedPubMedCentral

22.

Kutner BA, Simoni JM, Aunon FM, et al. How stigma toward anal sexuality promotes concealment and impedes health-seeking behavior in the U.S. Among cisgender men who have sex with men. Arch Sex Behav. 2020. https://doi.org/10.1007/s10508-019-01595-9.

23.

Algarin AB, Zhou Z, Cook CL, Cook RL, Ibañez GE. Age, sex, race, ethnicity, sexual orientation: intersectionality of marginalized-group identities and enacted HIV-related stigma among people living with HIV in Florida. AIDS Behav. 2019;23(11):2992–3001. https://doi.org/10.1007/s10461-019-02629-y.CrossRefPubMedPubMedCentral

24.

Logie CH, James L, Tharao W, Loutfy MR. HIV, gender, race, sexual orientation, and sex work: a qualitative study of intersectional stigma experienced by HIV-positive women in Ontario, Canada. PLoS Med. 2011;8(11):e1001124.CrossRef

25.

Ramachandran S, Yonas MA, Silvestre AJ, Burke JG. Intimate partner violence among HIV-positive persons in an urban clinic. AIDS Care. 2010;22(12):1536–43. https://doi.org/10.1080/09540121.2010.482199.CrossRefPubMedPubMedCentral

26.

Zierler S, Cunningham WE, Andersen R, Shapiro MF, Nakazono T, Morton S, et al. Violence victimization after HIV infection in a US probability sample of adult patients in primary care. Am J Public Health. 2000;90(2):208–15. https://doi.org/10.2105/ajph.90.2.208.CrossRefPubMedPubMedCentral

27.

Earnshaw VA, Smith LR, Cunningham CO, Copenhaver MM. Intersectionality of internalized HIV stigma and internalized substance use stigma: implications for depressive symptoms. J Health Psychol. 2015;20(8):1083–9. https://doi.org/10.1177/1359105313507964.CrossRefPubMed

28.

Parker R, Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med. 2003;57(1):13–24. https://doi.org/10.1016/S0277-9536(02)00304-0.CrossRefPubMed

29.

Foreman M, Lyra P, Breinbauer C. Understanding and responding to HIV/AIDS-related stigma and discrimination in the health sector. Washington, DC: Pan American Health Organisation; 2003.

30.

Bogart LM, Cowgill BO, Kennedy D, Ryan G, Murphy DA, Elijah J, et al. HIV-related stigma among people with HIV and their families: a qualitative analysis. AIDS Behav. 2008;12(2):244–54. https://doi.org/10.1007/s10461-007-9231-x.CrossRefPubMed

31.

Greenhalgh T, Hurwitz B. Why study narrative? Br Med J. 1999;318(7175):48–50. https://doi.org/10.1136/bmj.318.7175.48.CrossRef

32.

Bowling A. Research methods in health: investigating health and health services. London: McGraw-hill Education; 2014.

33.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. https://doi.org/10.1191/1478088706qp063oa.CrossRef

34.

Peltzer K, Pengpid S. Prevalence and associated factors of enacted, internalized and anticipated stigma among people living with HIV in South Africa: results of the first national survey. HIV/AIDS (Auckland, NZ). 2019;11:275.

35.

Stringer KL, Turan B, McCormick L, Durojaiye M, Nyblade L, Kempf M-C, et al. HIV-related stigma among healthcare providers in the deep south. AIDS Behav. 2016;20(1):115–25. https://doi.org/10.1007/s10461-015-1256-y.CrossRefPubMedPubMedCentral

36.

Florencio J. AIDS: homophobic and moralistic images of the 1980s still haunt our view of HIV. The Conversation. 2018 27 November 2018.

37.

Herron P. Current perspectives on the impact of pre-exposure prophylaxis stigma regarding men who have sex with men in the United States. HIV AIDS (Auckland, NZ). 2020;12:187–92.

38.

Kalan ME, Han J, Taleb ZB, Fennie KP, Jafarabadi MA, Dastoorpoor M, et al. Quality of life and stigma among people living with HIV/AIDS In Iran. HIV/AIDS (Auckland, NZ). 2019;11:287.

39.

Nyasha MT, Kgomotso HDS. Dual voices of women living with human immunodeficiency virus and acquired immune deficiency syndrome in Gauteng Province of South Africa. J AIDS HIV Res. 2018;10(7):110–20.CrossRef

40.

Adane B, Yalew M, Damtie Y, Kefale B. Perceived stigma and associated factors among people living with HIV attending ART clinics in public health facilities of Dessie City, Ethiopia. HIV/AIDS (Auckland, NZ). 2020;12:551.

41.

Feyissa GT, Lockwood C, Woldie M, Munn Z. Reducing HIV-related stigma and discrimination in healthcare settings: a systematic review of quantitative evidence. PLoS One. 2019;14(1):e0211298. https://doi.org/10.1371/journal.pone.0211298.CrossRefPubMedPubMedCentral

42.

Nyblade L, Stockton MA, Giger K, Bond V, Ekstrand ML, Mc Lean R, et al. Stigma in health facilities: why it matters and how we can change it. BMC Med. 2019;17(1):1–15.CrossRef

43.

Rai T, Bruton J, Kall M, Ma R, Pufall E, Day S, et al. Experience of primary care for people with HIV: a mixed-method analysis. Br J Gen Pract Open. 2019;3(4):bjgpopen19X101665.CrossRef

Title: HIV-related stigma in the UK then and now: to what extent are we on track to eliminate stigma? A qualitative investigation
Authors: Barbara Hedge
Karrish Devan
Jose Catalan
Anna Cheshire
Damien Ridge
Publication date: 01-12-2021
Publisher: BioMed Central
Keyword: Human Immunodeficiency Virus
Published in: BMC Public Health / Issue 1/2021
Electronic ISSN: 1471-2458
DOI: https://doi.org/10.1186/s12889-021-11000-7

2024 ASCO Annual Meeting

Springer Medicine

HIV-related stigma in the UK then and now: to what extent are we on track to eliminate stigma? A qualitative investigation

Abstract

Background

Methods

Results

Conclusion

2024 ASCO Annual Meeting

Springer Medicine

Abstract

Background

Methods

Results

Conclusion

Please log in to get access to this content

Other articles of this Issue 1/2021

Physical distancing messages targeting youth on the social media accounts of Canadian public health entities and the use of behavioral change techniques

Self-collection for HPV-based cervical screening: a qualitative evidence meta-synthesis

Trends in emergency contraception awareness among women and girls in 28 sub-Saharan countries

Association of early-life undernutrition and risk of dyslipidemia in adulthood: a population-based cohort study

Psychological responses and associated factors during the initial stage of the coronavirus disease (COVID-19) epidemic among the adult population in Poland - a cross-sectional study

Evaluation of the University of California Diabetes Prevention Program (UC DPP) Initiative