HIV/AIDS stigma accumulation among people living with HIV: a role of general and relative minority status
Abstract
The main objective of the study was to investigate the relationship between selected sociodemographic factors (i.e. sexual orientation, gender and AIDS status), and the level of HIV/AIDS stigma among people living with HIV (PLWH). The participants were 663 adults with a medically confirmed diagnosis of HIV infection, undergoing antiretroviral treatment. Their level of HIV/AIDS stigma was assessed with the Berger HIV Stigma Scale, and relevant sociodemographic and clinical data were obtained using a self-report survey. The main effect was revealed only for sexual orientation and total stigma; those with heterosexual orientation declared higher levels of total stigma than those with other sexual orientations. For the subscales, significant results were obtained only for disclosure concerns. Namely, for the interaction of gender and sexual orientation, the highest level of disclosure stigma was declared by heterosexual women, while there was no such relationship for men. This result was further modified when AIDS diagnosis was added to the interaction. There is a cumulative effect of PLWH minority statuses, rather than main effects of each status individually. Thus, each minority status should be analysed from at least two perspectives, general (i.e., compared to the general population) and relative (i.e., compared to the population in question).
Introduction
June 2021 marked the fortieth anniversary of the first cases of human immunodeficiency virus (HIV) infection being detected by the Centers for Disease Control and Prevention1, which initiated the acquired immunodeficiency syndrome (AIDS) pandemic. Over this time, great medical progress in HIV treatment has changed HIV/AIDS from a death sentence to a chronic and manageable health problem2. This transformation is highlighted by the fact that the average life expectancy of people living with HIV (PLWH) today does not substantially differ from that of the general population3, and the medical status of HIV infection no longer poses the most important predictor of quality of life among PLWH4. However, PLWH still experience intense HIV-related distress and consistently report lower levels of quality of life in comparison not only with the general population but also with patients suffering from other chronic illnesses (e.g., rheumatoid arthritis and diabetes mellitus types 1 and 2)5. This pessimistic trend is associated with the present stigmatisation of PLWH. Although the explicit manifestations of this have altered, the overall level of stigmatisation remains rather similar to what it was at the beginning of the HIV/AIDS epidemic6,7. In fact, HIV/AIDS stigma is treated as the main source of psychological distress and low health-related quality of life for PLWH, as well as the greatest barrier to effective coping with the HIV epidemic in healthcare worldwide3,8
Stigma can be conceptualised from two different but related perspectives9. At the societal level, it is defined as the negative perception of a particular trait or characteristic by others10. In the context of HIV, stigma encompasses negative attitudes, behaviors, and judgments directed towards individuals living with or at risk of HIV. Generally, HIV stigma originates from a fear of HIV, often influenced by the initial images associated with HIV that emerged in the early 1980s11. The misconceptions created then about HIV transmission, treatment options and the functioning of PLWH persist to this day. According to UNAIDS12, HIV stigma significantly hampers the HIV response by impeding access to prevention services, sexual and reproductive health services, as well as testing, treatment, and adherence. At the individual level, as outlined by Earnshaw and Chaudoir13, stigma operates through three mechanisms. Enacted stigma refers to the experiences of PLWH who have encountered prejudice and discrimination from others. Anticipated stigma pertains to the expectation held by PLWH that they will encounter prejudice and discrimination from others in the future. Internalized stigma, on the other hand, encompasses the negative beliefs and attitudes that PLWH have about themselves as a result of being infected with HIV.
A huge number of studies have been conducted to understand the complex process of PLWH’s stigmatisation, which encompasses both the internal traumatic character of HIV/AIDS itself as a potentially infectious and life-threatening condition and the external socio-cultural issues that reveal existing inequalities in class, race, gender and sexuality6,14. Regarding this conceptual complexity, psychological research on HIV/AIDS stigma is still searching for an empirically validated theoretical model that could provide a clear definition of the term and identify the processes through which stigma worsens the quality of life of PLWH15,16. Moreover, to fully understand the mechanisms and effects of HIV/AIDS stigma, it is vital to also include the minority stress theory, which describes the uniqueness of stressors not only experienced by sexual minorities17 but also other stigmatised groups in society, including PLWH18. More specifically, it has been observed that HIV/AIDS stigma may be intensified among sexual minorities (e.g. lesbian, gay and bisexual PLWH), who are additionally significantly affected by the HIV epidemic19,20,21,22. Therefore, among PLWH, the following two levels of stigmatisation are observed: one related to being diagnosed with HIV (i.e. objective medical status defined by a specific social construction and reception), and the other related to being in a sexual minority. Obviously, not every person infected with HIV is in a sexual minority, but those who are may be prone to stigma accumulation22. It has been documented in several studies that PLWH who are in a sexual minority have even lower well-being and worse health than the general population of HIV/AIDS patients23. The minority stress theory explains that this as a result of their disproportional exposure to stigma-related stress due to their double devaluated social status17. The matter is further complicated by the fact that the process of stigma accumulation has been found to be more pronounced not only among females infected with HIV, compared with HIV-infected males24, but also among PLWH in the AIDS phase, with visible signs of HIV infection, in comparison with PLWH with good medical control of their infection6,25. Thus, being infected with HIV can result in multiple sources of stigma-related stress, depending on availability of minority identities in a specific sample7,18.
This research area held significant importance during the COVID-19 pandemic, which presented a global challenge for mental health worldwide26. It holds particular significance among various marginalized populations, including PLWH27. PLWH, specifically, faced numerous disruptions to their daily lives, such as obstacles to healthcare due to COVID-19-related hospital changes, delays in HIV testing, difficulties accessing HIV treatment, and compromised privacy due to telemedicine services28. Additionally, being infected with HIV turned out to be an independent risk factor for both severe COVID-19 at admission and in-hospital mortality29. Furthermore, PLWH faced additional isolation and stigmatization resulting from misinformation surrounding a perceived connection between COVID-19 vaccines and the risk of HIV infection30. These factors could have amplified the already high levels of HIV/AIDS stigma and societal fears towards PLWH, particularly those from gender and sexual minorities27.
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