Fear really comes from the unknowns: exploring the impact of HIV stigma and discrimination on quality of life for people living with HIV in Singapore through the minority stress model
Ritu Jain A B * , Chen Seong Wong C D E and Rayner Kay Jin Tan D FA
B
C
D
E
F
Abstract
Structural stigma and institutionalised discrimination towards people living with HIV remain pervasive in many settings. However, qualitative explorations of experiences of stigma, health and social service engagement, and quality of life among people living with HIV in Singapore remain under-researched.
Semi-structured interviews were conducted with 73 participants in Singapore. These included 56 people living with HIV (30 men who have sex with men, 23 heterosexual men, and 3 women) and 17 stakeholders including healthcare professionals and other allied workers. Interviews focused on participant perspectives or experiences of HIV diagnosis, navigating healthcare, attitudes towards HIV, and impact of HIV on relationships. Data were analysed through inductive thematic analysis.
Our findings were framed within a minority stress model, highlighting the distal and proximal stressors relating to living with HIV. With regard to distal stressors, participants highlighted that they had experienced or were aware of institutionalised discrimination towards people living with HIV across various aspects of their lives. These included experiences – overt and covert – of discrimination in education, workplace, and healthcare settings. With regard to proximal stressors, participants highlighted the role of anticipated stigma and the stress of concealment. This included participants’ fear of potential legal and/or social repercussions resulting from the disclosure of their HIV status, actions that they may not be able to anticipate and articulate. Although employers may not overtly discriminate, the fear of such anticipated discrimination influenced decisions to conceal HIV status in job applications and workplaces. This restricted agency for the people living with HIV in our study by affecting their regular medical follow-ups, socialising behaviours, and overall quality of life. Consequently, many participants felt that concealment of their status, and forgoing potential educational, employment, and even health opportunities, were the only ways of protecting themselves from such forms of stigma and discrimination.
This study found that anticipated stigma and discrimination diminished the quality of life of people living with HIV in Singapore. Implementing an anti-discrimination framework could address the unpredictability and alleviate the manifold unknowns of anticipated stigma.
Keywords: disclosure, discrimination, emigration and immigration, employment, fear, minority stress, quality of life, sexual and gender minorities.
References
1 UNAIDS. The key population atlas. 2022. Available at https://kpatlas.unaids.org/dashboard [cited 22 September 2022]
3 Ministry of Health Singapore. Update on the HIV/AIDS situation in Singapore 2022 (June 2023). 2023. Available at https://www.moh.gov.sg/resources-statistics/infectious-disease-statistics/hiv-stats/update-on-the-hiv-aids-situation-in-singapore-2022-(june-2023) [cited 5 September 2023]
5 Tan RKJ, Phua K, Tan A, et al. Exploring the role of trauma in underpinning sexualised drug use (‘chemsex’) among gay, bisexual and other men who have sex with men in Singapore. Int J Drug Policy 2021; 97: 103333.
| Crossref | Google Scholar | PubMed |
6 Tan RKJ, Kaur N, Kumar PA, et al. Clinics as spaces of costly disclosure: HIV/STI testing and anticipated stigma among gay, bisexual and queer men. Cult Health Sex 2020; 22(3): 307-320.
| Crossref | Google Scholar | PubMed |
7 Tan RKJ, Tang W, Tucker JD. Public health services and intersectional stigma: a social sciences perspective with implications for HIV service design and delivery. Curr Opin HIV AIDS 2023; 18(1): 18-26.
| Crossref | Google Scholar | PubMed |
8 Lorenc T, Marrero-Guillamon I, Llewellyn A, et al. HIV testing among men who have sex with men (MSM): systematic review of qualitative evidence. Health Educ Res 2011; 26(5): 834-846.
| Crossref | Google Scholar | PubMed |
9 Pachankis JE, Hatzenbuehler ML, Hickson F, et al. Hidden from health: structural stigma, sexual orientation concealment, and HIV across 38 countries in the European MSM Internet Survey. AIDS 2015; 29(10): 1239-1246.
| Crossref | Google Scholar | PubMed |
10 Tan RKJ, Teo AKJ, Kaur N, et al. Extent and selectivity of sexual orientation disclosure and its association with HIV and other STI testing patterns among gay, bisexual and other men who have sex with men. Sex Trans Infect 2019; 95: 273-278.
| Crossref | Google Scholar |
11 Wilkerson JM, Fuchs EL, Brady SS, et al. Correlates of Human Immunodeficiency Virus/Sexually Transmitted Infection (HIV/STI) testing and disclosure among HIV-negative collegiate men who have sex with men. J Am Coll Health 2014; 62(7): 450-460.
| Crossref | Google Scholar | PubMed |
12 Quinn DM, Chaudoir SR. Living with a concealable stigmatized identity: the impact of anticipated stigma, centrality, salience, and cultural stigma on psychological distress and health. J Pers Soc Psychol 2009; 97(4): 634-651.
| Crossref | Google Scholar | PubMed |
13 Golub SA, Gamarel KE. The impact of anticipated HIV stigma on delays in HIV testing behaviors: findings from a community-based sample of men who have sex with men and transgender women in New York City. AIDS Patient Care STDS 2013; 27(11): 621-627.
| Crossref | Google Scholar | PubMed |
14 Camacho G, Kalichman S, Katner H. Anticipated HIV-related stigma and HIV treatment adherence: the indirect effect of medication concerns. AIDS Behav 2020; 24(1): 185-191.
| Crossref | Google Scholar | PubMed |
15 Yu F, Hsiao Y-H, Park S, et al. The influence of anticipated HIV stigma on health-related behaviors, self-rated health, and treatment preferences among people living with HIV in East Asia. AIDS Behav 2023; 27(4): 1287-1303.
| Crossref | Google Scholar | PubMed |
16 Earnshaw VA, Quinn DM. The impact of stigma in healthcare on people living with chronic illnesses. J Health Psychol 2012; 17(2): 157-168.
| Crossref | Google Scholar | PubMed |
17 Wanjala SW, Nyongesa MK, Mapenzi R, et al. A qualitative inquiry of experiences of HIV-related stigma and its effects among people living with HIV on treatment in rural Kilifi, Kenya. Front Public Health 2023; 11: 1188446.
| Crossref | Google Scholar |
18 Lazarus JV, Safreed-Harmon K, Kamarulzaman A, et al. Consensus statement on the role of health systems in advancing the long-term well-being of people living with HIV. Nat Commun 2021; 12(1): 4450.
| Crossref | Google Scholar | PubMed |
19 Meyer IH. Minority stress and mental health in gay men. J Health Soc Behav 1995; 36(1): 38-56.
| Crossref | Google Scholar | PubMed |
20 Meyer IH. Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull 2003; 129(5): 674-697.
| Crossref | Google Scholar | PubMed |
21 Rendina HJ, Gamarel KE, Pachankis JE, et al. Extending the minority stress model to incorporate HIV-positive gay and bisexual men’s experiences: a longitudinal examination of mental health and sexual risk behavior. Ann Behav Med 2017; 51(2): 147-158.
| Crossref | Google Scholar | PubMed |
22 Breslow AS, Brewster ME. HIV is not a crime: exploring dual roles of criminalization and discrimination in HIV/AIDS minority stress. Stigma Health 2020; 5(1): 83-93.
| Crossref | Google Scholar |
23 Frost DM, Meyer IH. Minority stress theory: application, critique, and continued relevance. Curr Opin Psychol 2023; 51: 101579.
| Crossref | Google Scholar | PubMed |
24 Goh YH. Parliament repeals Section 377A, endorses amendments protecting definition of marriage. The Straits Times 2022; Singapore Singapore Press Holdings.
| Google Scholar |
25 Iau J. HIV disclosure law to be amended to exempt those with undetectable viral load if conditions are met. The Straits Times 2024; Singapore Singapore Press Holdings.
| Google Scholar |
27 Morrow SL. Quality and trustworthiness in qualitative research in counseling psychology. J Couns Psychol 2005; 52(2): 250-260.
| Crossref | Google Scholar |
29 Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3(2): 77-101.
| Crossref | Google Scholar |
30 Dedoose. 9.0. 17, cloud application for managing, analyzing, and presenting qualitative and mixed method research data. Los Angeles, CA: SocioCultural Research Consultants, LLC; 2021. Available at www.dedoose.com
31 The Lancet HIV. Seeing the people in the percentages. Lancet HIV 2021; 8(1): e1.
| Crossref | Google Scholar |