General and healthcare-related HIV stigma among cisgender Brazilian women: the role of socioeconomic vulnerability

Abstract

Background

HIV-related stigma is associated with worse health outcomes and lower adherence to antiretroviral therapy. There is limited data on the stigma faced by Latin American cisgender women, although they are among the populations most affected by HIV. This study aims to provide insight into the Stigma Index Brazil, with the objective of estimating the prevalence of HIV-related stigma among cisgender women in Brazil and to investigate the role of low socioeconomic status in stigma experience.

Methods

This is a cross-sectional community-based study. A total of 30 people with HIV were trained to recruit participants from their peer networks; 1,768 people with HIV from all regions of Brazil participated in the study, of which 566 participants were cisgender women. We used the Stigma Index, an instrument that assesses global trends in HIV-related stigma from the perspective of people with HIV.

Results

Approximately 70% of participants reported some form of HIV-related stigma. The most prevalent forms were discriminatory comments or gossiping (51.26%) and verbal harassment (30.99%). More than 20% experienced any health care related HIV-stigma in the last 12 months, the most frequent being the avoidance of physical contact (10.02%). Women in social vulnerability faced more stigma compared to the group without social vulnerability, both in general contexts (75.79% vs 64.32%; χ2 = 8.67, p < 0.05) and in healthcare contexts (24.12% vs 16.02%; χ2 = 4.06, p < 0.05).

Conclusion

We found a high prevalence of stigma associated with HIV faced by Brazilian women from all regions of the country, both in everyday life and in healthcare contexts. Evidence-based interventions to reduce stigma in the general population, and specific mental health care aimed at women with HIV in Brazil, especially among those with greater socioeconomic vulnerability, are urgent.

Keywords:

• HIV/AIDS
• stigma
• HIV-related discrimination
• gender
• serophobia
• Brazil

The particularities of the HIV epidemic in Brazil are marked by numerous factors, such as gender differences, sexual behaviors, socioeconomic status, age group, as well as regional efforts and resources dedicated to its prevention and treatment [1,2]. Data from the World Health Organization indicate that women account for more than 50% of cases of HIV infection in the world, and that young women are twice as likely to contract HIV compared to men [3]. Moreover, vertical transmission accounted for 2.2% of total cases with known exposure in 2021 [4]. In Brazil, a notable increase was observed in the percentage of cases among women aged >50 years, which rose from 12.2% in 2011 to 17.9% in 2021 [5]. Among women, 29.4% of the cases occurred in white women and 63.2% in Black women (13.7% of Black women and 49.5% of brown women).

People with HIV undergo a process of social devaluation that has been present since the pandemic emerged [6]. Several reviews have indicated that this stigma results in worse mental health, reduced utilization of healthcare services, and lower adherence to antiretroviral therapy [7,8]. Cisgender women are among the groups that are disproportionately affected by the HIV stigma in several contexts [9]. The intersection of diverse types of stigmas, such as those related to sexuality and gender, makes cisgender women with HIV more vulnerable to HIV-related health inequalities [9,10]. For instance, the lack of guaranteed fundamental rights may influence the fairness of healthcare services delivery; this may increase the chances of prejudices, sexual and reproductive rights violations, and discrimination, leading to the avoidance of healthcare services, which in turn reduces the access to prevention, diagnosis, and treatment [9]. Furthermore, studies report that the impacts of HIV-related stigma on mental health, quality of life and health indicators tend to be greater among women [9]. Particularly in Brazil, a recent study implied that gender inequalities affecting cisgender women have been noted in HIV prevention campaigns, which focused mostly on the use of external condoms [1].

In the past decades, there has been a growing interest in measuring the extent of stigma and discrimination that people with HIV face [7,10,11]. However, some issues need to be addressed regarding specific populations and contexts. Cisgender women, for example, are underrepresented in studies that investigate HIV-related stigma. When they appear, they are usually sex workers, limiting the understanding of HIV-related stigma in cisgender women in general [12]. Even among developed countries, few studies consisting exclusively of samples of women have been conducted in HIV-related stigma topics. For example, a recent systematic review that selected studies published in developed countries between 2011 and 2019 found only eight studies [9]. This is also true in Brazil, where studies on HIV stigma and women are mostly qualitative and localized [13].

Two recent large-scale population studies revealed that economic vulnerability was a major risk factor for AIDS mortality in Brazil, with cash transfer programs reducing mortality [14] and economic deprivation increasing [15]. Considering the growing epidemiological importance of cisgender women with HIV in confronting the epidemic of HIV/AIDS [5], the lack of representation of women in Brazilian and international studies [9] and the especially harmful effects of stigma in this population [1], historically subjected to cultural processes of devaluation, marginalization and violence in Brazil [16–19], the present study aims to estimate the prevalence of general and healthcare-related HIV stigma in cisgender women in Brazil and to investigate the role of low socioeconomic status in stigma experience.

Materials and methods

Design

This is a cross-section community-based survey conducted in 7 key capital-cities due to HIV-epidemiology representing all Brazilian region: Porto Alegre (south), Manaus (north), Brasília (center-west), Recife and Salvador (northeast), São Paulo and Rio de Janeiro (southeast). Participants were recruited via snowball sampling. Therefore, 30 people with HIV functioned as data collectors, representing a diverse profile regarding gender identity, ethnicity, generation, and sexual orientation.

Inclusion criteria were being a cisgender woman, over 18 years old, living in one of the target cities. Data collection took place in 2019. The project was approved by the Research Ethics Committee of the Pontifical Catholic University of Rio Grande do Sul (99716918.5.0000.5336) and all research participants consented to participate according to Brazilian legislation and Helsinki Principles.

Measures

Participants answered the Stigma Index Brazil survey in its 2.0 version [20]. The Stigma Index [20,21], is a survey developed and deployed by people with HIV, that aims to detect and measure the change of trends in relation to stigma related to HIV, from the perspective of people with HIV. Launched in 2008, the Stigma Index was developed by the Global Network of People living with HIV (GNP+), The International Community of Women Living with HIV (ICW), Joint United Nations Programme on HIV/AIDS (UNAIDS) [20,22] and International Planned Parenthood Federation (IPPF). By May 2023, more than one hundred countries had completed the study, with more than 100,000 people with HIV interviewed, and about thirty countries were implementing the survey [21].

The review and the selection of measures in the original and the Brazilian adapted survey were the result of several expert consultations, and while the questionnaire used in the Stigma Index 2.0 was not formally validated, it was based on field tested, the ecological input of groups working on stigma and the affected communities [23] In this study, we focus on general and healthcare specific HIV-related stigma.

Sociodemographic

Sociodemographic information was questioned, and it is gathered in Supplementary Table 1.

Gender identity was assessed using the two-step question method: sex assigned at birth and gender identity. For this study, only those assigned female at birth and currently identified as women were kept.

To be identified as a key population, participants should be in at least one of the following groups. A) sexual orientation was assessed by asking whether participants currently or had previously identified as MSM, lesbian/homosexual, or bisexual and/or ever had sex with women. B) Sex work was assessed by asking whether participants had ever had sex in exchange for money or goods. C) PWUD was identified by asking if the participants ever injected or habitually used drugs such as heroin, cocaine (including crack), or methamphetamines. D) Finally, participants indicated if they were currently or had ever been incarcerated or in prison.

Socioeconomic vulnerability status was assessed with the following question ‘In the last 12 months, how often have you been unable to meet basic needs (e.g., food, shelter, clothing)?’. Participants that answered ‘Never’ were classified in the non-socioeconomic vulnerability group (N-SEV). Those who answered, ‘Some of the time’ and ‘Most of the time’ were grouped in the socioeconomic vulnerability group (W-SEV). Participants were asked about the lifetime stigma they may have experienced because of their HIV status, choosing from eleven multiple scenarios (Table 1). The Cronbach’s alpha for this scale was excellent (.80).

Table 1. Lifetime general HIV-stigma experiences stratified by socioeconomic vulnerability status.

	Total		N-SEV		W-SEV		χ2	V	OR	95% CI
	n	%	n	%	n	%
Have you ever been aware of other people (other than family members) making discriminatory remarks or gossiping about you because of your HIV status? (n = 515)	264	51.26	105	47.30	159	54.27	2.46	0.07	0.28	−0.07 − 0.63
Have you ever been aware of family members making discriminatory remarks or gossiping about you because of your HIV status? (n = 524)	249	47.52	91	40.44	158	52.84	7.91*	0.12	0.50*	0.15–0.85
Has someone ever verbally harassed you (e.g., yelled, scolded, or was otherwise verbally abusive) because of your HIV status? (n = 526)	163	30.99	60	26.32	103	34.56	4.11*	0.09	0.38*	0.01–0.77
Have you ever been excluded from family activities because of your HIV status (n = 516)	132	25.58	40	18.02	92	31.29	11.71*	0.15	0.73*	0.31–1.15
Have you ever been refused employment or lost a source of income or job because of your HIV status? (n = 501)	128	25.55	41	18.98	87	30.53	8.61*	0.13	0.63*	0.21–1.05
Have you ever been excluded from social gatherings or activities (e.g., weddings, funerals, parties, clubs) because of your HIV status? (n = 490)	119	24.29	30	14.35	89	31.67	19.55*	0.2	1.02*	0.56–1.48
Has your wife/husband or partner(s) ever experienced discrimination because of your HIV status (n = 396)	95	23.99	41	23.56	54	24.32	0.03	<0.01	0.04	−0.42–0.51
Has your job description or the nature of your job ever changed, or have you ever been denied a promotion, because of your HIV status? (n = 475)	67	14.11	23	11.17	44	16.36	2.6	0.07	0.44	−0.1–0.98
Has someone ever blackmailed you because of your HIV status? (n = 525)	66	11.66	28	12.39	38	12.71	0.01	<0.01	0.03	−0.49–−0.55
Have you ever been excluded from religious activities or places of worship because of your HIV status? (n = 483)	46	9.52	12	5.85	34	12.23	5.57*	0.11	0.81*	0.12–1.49
Has someone ever physically harassed or hurt you (e.g., pushed, hit, or was otherwise physically abusive) because of your HIV status? (n = 524)	43	8.21	9	3.96	34	11.45	9.56*	0.14	1.14*	0.39–1.90
Any general HIV-related stigma experience	401	70.85	155	64.32	246	75.69	8.67*	0.12	0.55*	0.18–0.91

Notes: *p < 0.05, N-SEV = non-socioeconomic vulnerability group, W-SEV = with-socioeconomic vulnerability group.

Healthcare specific HIV stigma

A multiple-answer question that assessed whether, in the past 12 months when seeking HIV-specific healthcare, participants had experienced a list of eight discriminatory experiences from general health facility staff because of their HIV status (Supplementary Table 2). The scale had good reliability (McDonald’s Omega = .80). Moreover, Minimum-rank factor analyses with simplimax rotation revealed that a 2-factor solution depicted the data properly (cumulative variance > 40%; Eigenvalues > 1). The Kaiser-Meyer-Olkin test was .79, and factor loadings ranged from .50 to .87.]

Sample

Sample size was calculated using EpiInfo™ StatCalc v7.2.1.0 (CDC, Atlanta, USA). It was considered the expected frequencies of HIV-related discrimination from previous Stigma Index 2.0 [24] stratified by the number of people with HIV in each studied city. Predicting a sample loss of 30%, considering a 99% confidence level and 5% margin of error, the source population was estimated to be 2,100 people. The final study sample of the survey consisted of 1,784 people.

Data analysis

IBM SPSS® v 23.0 (IBM Corp, Armonk, USA) was used to calculate descriptive statistics, t-tests with Cohen’s d for effect sizes, chi-square tests with Cramer’s V for effect size and with unadjusted odds ratio with 95% confidence interval. A positive response to any item of the scales constituted the ‘Any General HIV-related stigma experience’, ‘any healthcare-stigma experience’ and ‘any sexual and reproductive rights violation’ score.

Results

The analysis of this study included 566 participants identified as cisgender women (Supplementary Table 1). Of the 121 women (21.39%) classified as key populations, 42 (7.92%) identified as women who have sex with women (WSW), lesbian/gay or bisexual persons. Also, 79 people had sex in exchange for money or other goods (14.06%). 81 (14.44%) injected or habitually used drugs such as heroin, cocaine (crack) or methamphetamines. Finally, 8 (1.43%) said they had been incarcerated or stayed in prison. It is important to highlight that the rest of the sample, 1202 participants, is made up of cisgender men, and transgender women and men, for this reason they are not included in this article.

The non-socioeconomic vulnerability group (N-SEV) was composed of 241 (42.58%) women and the socioeconomic vulnerability group (W-SEV) was composed of 325 participants (57.42%). Table 1 considered sample differences per with socioeconomic vulnerability status. W-SEV women were younger, more identified as black or brown, reported less frequently that they were currently studying, had low educational level, and reported twice as frequent unemployment. The number of years with HIV is the same in both groups.

Concerning lifetime general HIV-stigma experiences (Table 1), the form of stigma most experienced by the participants was knowing about other people making discriminatory comments or gossiping because they are HIV-positive individuals (51.26%). Even among family members, this form of discrimination was widely reported, as 47.52% of participants stated that they knew that a family member made discriminatory comments or gossiped because they were HIV-positive individuals. However, discrimination is not restricted to gossip or discriminatory comments. The data show that several participants have already reported having suffered verbal harassment (30.99%), physical attacks (8.21%) and even loss of source of income or employment for being HIV-positive individuals (25.55%). Therefore, discrimination underlies not only the family environments but also the professional environments of the participants, manifesting itself in diverse ways.

Women with socioeconomic vulnerability status reported more frequently all scenarios except gossip from other people other than family members, blackmail, job insecurity and wife/husband discrimination. Nevertheless, the odds of experiencing any lifetime general HIV-stigma in women with N-SEV (64.32%) versus women W-SEV (75.69%) was OR 0.55 95% CI [0.18–0.91].

Next, 409 (76.65%) women sought health care for other reasons not related to HIV care in the last 12 months, with no difference per SEV (χ2(1) = 1.61, p = 0.20, V = 0.05. It is noteworthy that 20.54% experienced any health care related HIV-stigma in the last 12 months, the most frequent being the avoidance of physical contact (10.02%). As for differences by SEV, the only one was that women with low SEV suffered more verbal abuse in the health context. Furthermore, in the overall score, the odds of experiencing any healthcare specific HIV-stigma in the last 12 months in women with N-SEV (16.02%) versus women W-SEV (24.12%) was OR 0.51, 95% CI [0.01–1.01]. Please, see Supplementary Table 2, which presents the results of healthcare specific HIV-stigma experiences stratified by socioeconomic vulnerability status.

Discussion

The objective of this study was to evaluate the prevalence of HIV-related stigma among Brazilian women and to assess the role of socioeconomic vulnerability in the experience of stigma. We found a high prevalence of HIV-related stigma reported by Brazilian women, both in everyday life contexts and in health contexts. For example, our results indicated that 70% of the participants reported having experienced HIV-related stigma throughout their lives and 20% of the Brazilian women evaluated reported having suffered some type of prejudice related to HIV in health contexts in the last twelve months. This prevalence, although lower than that found in African countries, such as Cameroon (43%) and Uganda (38%) [23], is higher tha-n that found in the Brazilian study by Costa et al. [25], in which the HIV Stigma Index was also used to assess experiences of prejudice in health contexts in the general population.

In the research by Costa et al. [25] the prevalence of HIV-related stigma in the sample was 15.21%, being 10.54% in the general population and 17.28% in the key population group, composed of people in deprivation of freedom, sex workers, people who use illicit drugs and gay, bisexual or other men who have sex with men. Therefore, the prevalence of experiences of prejudice faced by women found in our study was higher than that verified in key populations in Brazil. In view of this finding, we wonder if women in Brazil should be considered ‘key population’, given that sexism and gender violence still reach epidemic levels in the country, especially in the cities of the north and northeast, less developed regions of the country.

In fact, there is no lack of evidence of social injustice and violence against women in Brazil. These social phenomena are evidenced, for example, by the lack of political representation and in other spaces of power [17], wage inequality [26], high rates of moral and sexual harassment in work contexts [27,28], sexual violence [19] and physical and psychological violence perpetrated by intimate partners [18,29], femicide [16,30], in addition to other forms of violence against women more pernicious, such as micro-aggressions and veiled violence, difficult to identify. All these forms of violence and social injustice remind, at some level, what individuals belonging to the group of key populations for facing the HIV/AIDS epidemic, such as men who have sex with men and who live with HIV in Brazil, face in terms of the double burden of stigma, related to sexual orientation and HIV infection [31].

Studies indicate that in Brazil there has been a tendency, since the 2000s of feminization of the HIV/AIDS epidemic [1,4]. Several sociocultural aspects are related to this phenomenon. Among them, the prejudiced understanding that associates HIV infection exclusively with gay men and sex workers or ‘people with promiscuous sexual behavior’, as well as the perception that cisgender and heterosexual women, especially those who are in a stable affective-sexual relationship, would not be vulnerable to HIV. In addition, gender inequalities that are expressed in the submission of women in conjugal life, also hinder the negotiation on the use of preventive methods in sexual relations with male partners. All these factors make women vulnerable both to HIV infection and to late identification of the disease, already in the advanced HIV phase.

Our results revealed a higher prevalence of stigma among women who lived in a condition of social vulnerability, both in general life context and in health context. This result is in line with our initial hypothesis and corroborates the results of previous studies [9]. For example, in a recent systematic review researchers found, from the analysis of results of eight studies conducted in developed countries, a negative association between stigma and health and quality of life indicators, among the women evaluated, indicating low socioeconomic level seems to amplify both the prevalence and the pervasive effects of HIV-related stigma [9].

These results highlight the importance of analyzing the intersections of different forms of social injustice and exclusion processes experienced by specific populations, such as women with HIV and living in conditions of social vulnerability. New Brazilian studies that evaluate HIV-related stigma and its particularities in samples exclusively formed by women are necessary. We also consider important studies that evaluate the experience of stigma among older women with HIV. Finally, we emphasize the importance of novel studies with Brazilian women that evaluate regional differences in the prevalence of HIV-related stigma.

Limitations

This study’s focus on the interplay between HIV-related stigma and socioeconomic vulnerability among cisgender women is a posterior choice, stemming from a broader research initiative that did not explicitly address the intersection of gender discrimination and HIV stigma. Consequently, it is important to consider that our findings might have been nuanced differently if the Stigma Index incorporated targeted items to measure the specific experiences of HIV stigma among diverse subgroups of women in Brazil. Additionally, this analysis did not encompass certain underlying factors that could influence the prevalence of stigma among Brazilian women, including determinants related to gender-related violence in the context of healthcare and daily life.

Conclusion

We found a high prevalence of stigma associated with HIV faced by Brazilian women, including in healthcare contexts. Evidence-based interventions to reduce stigma in the general population, and specific mental health care aimed at women with HIV in Brazil, especially among those with greater socioeconomic vulnerability, are urgent.

Funding details

This work was supported by the Joint United Nations Program on HIV/AIDS (UNAIDS-Brazil) and the United Nations Development Programme (UNDP- Brazil)

Acknowledgments

We thank the representatives of people with HIV networks who contributed to the Stigma Index adaptation process and implementations, and people with HIV who responded to the survey.

Data availability statement

The data that support the findings of this study are available from the corresponding author, [ABC], upon reasonable request.

Disclosure statement

No potential conflict of interest was reported by the author(s).