Register      Login
Sexual Health Sexual Health Society
Publishing on sexual health from the widest perspective
RESEARCH ARTICLE (Open Access)

Stigma, support, and messaging for people recently diagnosed with HIV: a qualitative study

Loretta M. Healey https://orcid.org/0000-0002-5718-861X A , Shirin R. Markham A , David J. Templeton A B C D , Lionel Rabie E and Anthony K. J. Smith https://orcid.org/0000-0002-0005-9542 F G *
+ Author Affiliations
- Author Affiliations

A Department of Sexual Health Medicine, Community Health, Sydney Local Health District, Sydney, NSW 2050, Australia.

B Sexual Assault Medical Service, Royal Prince Alfred Hospital, Sydney Local Health District, Sydney, NSW 2050, Australia.

C The Kirby Institute, UNSW Sydney, Sydney, NSW 2052, Australia.

D Central Clinical School, The Faculty of Medicine and Health, The University of Sydney, Sydney, NSW 2006, Australia.

E ACON, Sydney, NSW 2010, Australia.

F Centre for Social Research in Health, UNSW Sydney, Sydney, NSW 2052, Australia.

G Australian Human Rights Institute, UNSW Sydney, Sydney, NSW 2052, Australia.

* Correspondence to: anthony.smith@unsw.edu.au

Handling Editor: Tiffany Renee Phillips

Sexual Health 21, SH24045 https://doi.org/10.1071/SH24045
Submitted: 27 February 2024  Accepted: 3 October 2024  Published: 17 October 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing. This is an open access article distributed under the Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC)

Abstract

Background

Despite advances in antiretroviral treatment and the message of undetectable equals untransmittable (U=U), there remain challenges related to stigma and quality of life for people living with HIV. This study aimed to understand the experiences of people recently diagnosed with HIV at a clinical service, to guide insights into how to improve care and support in the contemporary treatment era.

Methods

This qualitative study involved semi-structured interviews with individuals diagnosed with HIV between 2016 and 2021 at RPA Sexual Health service (a sexual health clinic in Sydney, Australia), or who were referred to the clinic directly after diagnosis. Participants were recruited through a short survey questionnaire between May 2022 and May 2023, and interviews were transcribed and analysed thematically.

Results

Fourteen participants were interviewed for the study, eight of whom were born outside of Australian or Aotearoa New Zealand. We found that diagnosis was still a shocking event requiring careful support; that there was ongoing stigma, shame, and reduced sexual confidence following diagnosis; and that beyond initial diagnosis, some people would benefit from ongoing support and education about key concepts regarding HIV treatment.

Conclusion

Our study suggests that HIV diagnosis remains disruptive, and sexual stigma is a key issue negatively impacting quality of life. Health providers can mitigate these issues by supporting the ongoing psychosocial needs of people with HIV in the early period of adjusting to HIV diagnosis, and referring to peer-based and other services. Initiating conversations about sex and dating and checking understandings of key health messages over time may promote improved care.

Keywords: Australia, diagnosis, healthcare workers, HIV, men, sexual behaviour, sexual confidence, stigma, treatment.

References

King J, McManus H, Kwon A, Gray R, McGregor S. HIV, viral hepatitis and sexually transmissible infections in Australia: annual surveillance report 2022. Sydney, Australia: The Kirby Institute, UNSW Sydney; 2022. Available at http://handle.unsw.edu.au/1959.4/unsworks_81131 [cited 22 February 2024]

Callander D, McManus H, Gray RT, Grulich AE, Carr A, Hoy J, et al. HIV treatment-as-prevention and its effect on incidence of HIV among cisgender gay, bisexual, and other men who have sex with men in Australia: a 10-year longitudinal cohort study. Lancet HIV 2023; 10(6): e385-93.
| Crossref | Google Scholar | PubMed |

Grulich AE, Jin F, Bavinton BR, Yeung B, Hammoud MA, Amin J, et al. Long-term protection from HIV infection with oral HIV pre-exposure prophylaxis in gay and bisexual men: findings from the expanded and extended EPIC-NSW prospective implementation study. Lancet HIV 2021; 8(8): e486-94.
| Crossref | Google Scholar | PubMed |

De Clercq J, Rutsaert S, De Scheerder M-A, Verhofstede C, Callens S, Vandekerckhove L. Benefits of antiretroviral therapy initiation during acute HIV infection. Acta Clin Belg 2022; 77(1): 168-76.
| Crossref | Google Scholar | PubMed |

Kay ES, Batey DS, Mugavero MJ. The HIV treatment cascade and care continuum: updates, goals, and recommendations for the future. AIDS Res Ther 2016; 13(1): 35.
| Crossref | Google Scholar |

Bavinton BR, Pinto AN, Phanuphak N, Grinsztejn B, Prestage GP, Zablotska-Manos IB, et al. Viral suppression and HIV transmission in serodiscordant male couples: an international, prospective, observational, cohort study. Lancet HIV 2018; 5(8): e438-47.
| Crossref | Google Scholar | PubMed |

Pearshouse R. Switzerland: statement on sexual transmission of HIV by people on ART. HIV AIDS Policy Law Rev 2008; 13(1): 37-8.
| Google Scholar | PubMed |

Rodger AJ, Cambiano V, Bruun T, Vernazza P, Collins S, Van Lunzen J, et al. Sexual activity without condoms and risk of HIV transmission in serodifferent couples when the HIV-positive partner is using suppressive antiretroviral therapy. JAMA 2016; 316(2): 171-81.
| Crossref | Google Scholar | PubMed |

Prevention Access Campaign. Who we are and what we do. Available at https://preventionaccess.com/ [cited 3 January 2024]

10  MacGibbon J, Bavinton BR, Broady TR, Ellard J, Murphy D, Calabrese SK, et al. Familiarity with, perceived accuracy of, and willingness to rely on Undetectable=Untransmittable (U=U) among gay and bisexual men in Australia: results of a national cross-sectional survey. Sex Health 2023; 20(3): 211-22.
| Crossref | Google Scholar | PubMed |

11  Wells N. U=U, PrEP and the unrealised promise of ending HIV-related stigma. Sex Health 2023; 20(3): 271-2.
| Crossref | Google Scholar | PubMed |

12  Calabrese SK, Kalwicz DA, Zaheer MA, Dovidio JF, Garner A, Zea MC, et al. The potential role of Undetectable = Untransmittable (U = U) in reducing HIV stigma among sexual minority men in the US. AIDS Behav 2024; 28: 741-57.
| Crossref | Google Scholar | PubMed |

13  Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM). A guide for clinicians to discuss U=U: Undetectable = Untransmittable. ASHM; 2018.

14  Bilardi JE, Hulme-Chambers A, Chen MY, Fairley CK, Huffam SE, Tomnay JE. The role of stigma in the acceptance and disclosure of HIV among recently diagnosed men who have sex with men in Australia: a qualitative study. PLoS ONE 2019; 14(11): e0224616.
| Crossref | Google Scholar |

15  Philpot SP, Persson A, Prestage G, Bavinton BR, Ellard J. The ‘normality’ of living as a gay serodiscordant couple in Sydney, Australia. Sociol Health Illn 2020; 42(8): 1837-57.
| Crossref | Google Scholar | PubMed |

16  Persson A, Smith AKJ, Wallace J, Valentine K, Bryant J, Hamilton M, Newman CE. Understanding ‘risk’ in families living with mixed blood-borne viral infection status: the doing and undoing of ‘difference’. Health 2022; 26(3): 284-301.
| Crossref | Google Scholar | PubMed |

17  NSW Government. NSW HIV strategy 2021–2025. Centre for Population Health; 2021.

18  Wells N, Murphy D, Ellard J, Philpot SP, Prestage G, RISE Study Team. HIV diagnosis as both biographical disruption and biographical reinforcement: experiences of HIV diagnoses among recently diagnosed people living with HIV. Qual Health Res 2023; 33(3): 165-75.
| Crossref | Google Scholar | PubMed |

19  Hollingdrake O, Dean J, Mutch A, Lui C-W, Howard C, Fitzgerald L. Understanding the Social and emotional dimensions of HIV self-management: a qualitative study of newly diagnosed people living with HIV in Queensland, Australia. J Assoc Nurses AIDS Care 2022; 33(2): 106-17.
| Crossref | Google Scholar | PubMed |

20  NSW Health. NSW HIV strategy 2021–2025: quarter 4 and annual data report 2022. NSW Health; 2022. Available at https://www.health.nsw.gov.au/endinghiv/Publications/q4-2022-and-annual-hiv-data-report.pdf

21  Gunaratnam P, Heywood AE, McGregor S, Jamil MS, McManus H, Mao L, et al. HIV diagnoses in migrant populations in Australia-a changing epidemiology. PLoS ONE 2019; 14(2): e0212268.
| Crossref | Google Scholar |

22  Medland NA, Chow EPF, Read THR, Ong JJ, Chen M, Denham I, et al. Incident HIV infection has fallen rapidly in men who have sex with men in Melbourne, Australia (2013–2017) but not in the newly-arrived Asian-born. BMC Infect Dis 2018; 18(1): 410.
| Crossref | Google Scholar |

23  Manalastas EJ, Ojanen TT, Torre BA, Ratanashevorn R, Hong BCC, Kumaresan V, Veeramuthu V. Homonegativity in Southeast Asia: attitudes toward lesbians and gay men in Indonesia, Malaysia, the Philippines, Singapore, Thailand, and Vietnam. Asia-Pac Soc Sci Rev 2017; 17(1): 25-33.
| Crossref | Google Scholar |

24  Philpot SP, Aung E, Prestage G, Mao L, Chen T, Varma R, et al. Qualitative interviews with overseas-born gay and bisexual men recently diagnosed with HIV from non-English speaking countries: report of results. UNSW Sydney; 2021. Available at http://handle.unsw.edu.au/1959.4/unsworks_74259 [cited 23 June 2021].

25  Callander D, Mooney-Somers J, Keen P, Guy R, Duck T, Bavinton BR, et al. Australian ‘gayborhoods’ and ‘lesborhoods’: a new method for estimating the number and prevalence of adult gay men and lesbian women living in each Australian postcode. Int J Geogr Inf Sci 2020; 34(11): 2160-76.
| Crossref | Google Scholar |

26  Braun V, Clarke V. Successful qualitative research: a practical guide for beginners. Los Angeles: SAGE; 2022. p. 382.

27  Wells N, Philpot SP, Murphy D, Ellard J, Howard C, Rule J, et al. Belonging, social connection and non-clinical care: experiences of HIV peer support among recently diagnosed people living with HIV in Australia. Health Soc Care Community 2022; 30: e4793-801.
| Crossref | Google Scholar | PubMed |

28  Roth GH, Walker ER, Talley CL, Hussen SA. ‘It’s a very grey, very messy area’: a qualitative examination of factors influencing undetectable gay men’s HIV status disclosure to sexual partners. Cult Health Sex 2023; 25(5): 664-79.
| Crossref | Google Scholar | PubMed |

29  Parliament of New South Wales. Public health amendment (Review) Bill 2017; 2017. Available at https://www.parliament.nsw.gov.au/bills/Pages/bill-details.aspx?pk=3426 [cited 22 February 2024]

30  Parliament of New South Wales. Crimes legislation amendment (Sexual Consent Reforms) Bill 2021; 2021. Available at https://www.parliament.nsw.gov.au/bills/Pages/bill-details.aspx?pk=3906 [cited 22 February 2024]

31  Positive Life NSW, HIV/AIDS Legal Centre. HIV and NSW consent law; 2023. Available at https://www.positivelife.org.au/blog/advocacy/hiv-and-nsw-consent-law/ [cited 22 February 2024]

32  McCormack H, Nathan S, Varma R, Haire B. Dissonances in communication with sexual health consumers in an inner-Sydney sexual health clinic in relation to health literacy: a mixed-methods study. Health Promot J Austr 2021; 32(S1): 133-42.
| Crossref | Google Scholar |

33  Smith AKJ, Newman CE, Haire B, Holt M. Clinician imaginaries of HIV PrEP users in and beyond the gay community in Australia. Cult Health Sex 2022; 24(10): 1423-37.
| Crossref | Google Scholar | PubMed |