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Editorial

Stigma among key populations living with HIV in the Dominican Republic: experiences of people of Haitian descent, MSM, and female sex workers

Yam, Eileen A.a; Pulerwitz, Juliea; Almonte, Dulceb; García, Felipac; del Valle, Angeld; Colom, Alejandrae; McClair, Tracy L.a; Dolores, Yordanaf

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doi: 10.1097/QAD.0000000000002642
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Abstract

Introduction

Throughout the Latin America and Caribbean (LAC) region, HIV disproportionately affects the most marginalized and vulnerable populations, namely ‘key populations’ such as MSM and female sex workers (FSWs). As a result, many people living with HIV (PLHIV) confront intense stigma and discrimination not only because of their seropositive status, but also by virtue of their association with these undervalued – and often criminalized – communities [1–4]. These intersecting stigmas experienced by PLHIV pose formidable barriers to seeking, initiating, and maintaining essential HIV care and treatment. To successfully fight the epidemic and achieve the UNAIDS 90–90–90 targets (i.e., 90% of those living with HIV know their status, 90% of those diagnosed with HIV receive sustained antiretroviral treatment (ART), and 90% of those on ART are virally suppressed), the LAC HIV response must prioritize the mitigation of HIV-related stigma and discrimination [5–7].

In the Dominican Republic, adult prevalence is 0.9% among men and 0.7% among women, and there are approximately 67 000 PLHIV in the country [8]. In 2016, the estimated 2229 AIDS-related deaths represented a 40% reduction in disease-attributable mortality since 2012 [8]. This decrease is a testament to the benefits of ART in prolonging the lives of those living with HIV. However, the country is far from achieving the 90–90–90 goals: among PLHIV, 77% know their seropositive status, among whom 55% are on ART, among whom 43% are virally suppressed [8]. Key populations are even more likely to have unmet HIV prevention and treatment needs. An estimated 5.2% of MSM and 4.5% of FSWs are living with HIV, more than four times the HIV prevalence among Dominican adults overall [8]. Furthermore, these individuals experience substantial stigma and discrimination based on their membership in these communities in the Dominican Republic, irrespective of their serostatus [1,9]. Although there are no explicit laws that criminalize sex work or same-sex activity, both communities experience pervasive harassment and abuse on account of their condemned behaviors [10–13]. In addition, people of Haitian descent are more heavily affected by HIV than any other community in the country [8]. For example, according to a 2016 modeling study, 48% of new HIV diagnoses were among Haitian migrants, among whom the adult prevalence was 4.6% [8]. The Haitian-origin community in the Dominican Republic confronts this HIV burden in the context of extreme anti-Haitian sentiment (antihaitianismo), exemplified by a 2013 decision by the Constitutional Court that retroactively rescinded birthright citizenship from any person born to undocumented parents since 1929 [14–16]. This decree – and ensuing mass deportations – created thousands of stateless, undocumented people of Haitian descent, which has had a chilling effect on healthcare utilization and undermined public health efforts in these communities [16–19].

Since 2008, PLHIV have documented and measured their experiences with stigma employing the widely used People Living with HIV Stigma Index, a standardized survey instrument developed by and for PLHIV. PLHIV in the Dominican Republic first implemented the Stigma Index in 2008, shedding light on the high levels of stigma and discrimination experienced by PLHIV. Among women, 23% had been advised by a healthcare professional that they should not have children, and 11% had been coerced by a healthcare professional to get sterilized, due to their HIV status. About one-third had felt ashamed (31%) or guilty (30%) for living with HIV [20]. More recently, Payan et al.[21] conducted a qualitative study among Dominican women living with HIV, revealing their pronounced internalized stigma and fear of disclosure. In addition, a 2017 study commissioned by the Consejo Nacional del VIH y el Sida (National HIV and AIDS Council) documented healthcare providers’ high levels of stigma towards PLHIV. Nearly half of providers (48%) agreed with the statement ‘people get infected by HIV because they engage in irresponsible behaviors,’ and 23% agreed that women who are living with HIV should not be allowed to have babies. In addition, 56% said that they prefer not to provide services to MSM because they engage in immoral conduct [22].

In the decade that has elapsed since the implementation of the original Stigma Index in the Dominican Republic, community members, advocates, and researchers have updated the Stigma Index to, for example, examine stigma in healthcare settings in greater depth, and more explicitly assess whether PLHIV attribute their poor treatment to their seropositive status (i.e., Stigma Index 2.0). To gather updated information on the experiences of HIV-related stigma among PLHIV in the Dominican Republic, we implemented Stigma Index 2.0 to systematically assess and document the experiences of seropositive adults, including three key populations most affected by the epidemic in the Dominican Republic (MSM, FSWs, and PLHIV of Haitian descent), as well as other PLHIV who did not identify with these three communities. Specifically, for each of these communities, we describe levels of internalized stigma and enacted stigma, and assess whether these experiences are associated with viral suppression, and with missing an ART dose.

Methods

From November 2018 to January 2019, under the PEPFAR-supported Project SOAR (Supporting Operational AIDS Research), the two largest PLHIV networks in the Dominican Republic – Alianza Solidaria para la Lucha Contra el VIH y SIDA (ASOLSIDA) and Red Dominicana de Personas que Viven con VIH/SIDA (REDOVIH) – fielded the Stigma Index 2.0 survey. In six provinces (La Altagracia, Barahona, Puerto Plata, La Romana, Santiago, and Santo Domingo), PLHIV interviewers identified potential participants through a combination of peer-to-peer and venue-based recruitment through existing PLHIV support groups and social networks. In addition to ‘snowball recruitment’ of peers, the study team also invited potential participants at clinics that provide HIV services, and community-based organizations. To ensure the inclusion of communities that are most affected by HIV in the country, interviewers purposively recruited seropositive adults who identified as FSWs, MSM, or Haitian-descent individuals, as well as other non-Haitian PLHIV. The interview, which lasted approximately 1 h, was conducted in Spanish, and participant responses were recorded on tablets using the electronic data collection application Open Data Kit. For participants who preferred to speak in Haitian Creole, bilingual interviewers spontaneously translated the survey aloud during the interview. Eligible participants were 18 years of age or older, and reported knowing their seropositive status for at least 1 year.

The institutional review board of the Population Council (New York) and the Consejo Nacional de Bioética en Salud (Dominican Republic) reviewed and approved this study protocol.

Data analysis

We describe sociodemographic and other pertinent background characteristics – such as time since HIV diagnosis, partner's HIV status, and whether participants were currently on ART – and we disaggregated these analyses by community (i.e., MSM, FSWs, people of Haitian origin, and other PLHIV). We used Chi-square tests, Fisher's exact tests, and Mann–Whitney U tests to conduct bivariate analyses comparing FSWs with other women (i.e., those who were neither MSM nor of Haitian descent); MSM with other men (i.e., those who were neither FSWs nor of Haitian descent); and Haitian-descent PLHIV with other non-Haitian PLHIV (i.e., those who did not identify with any of these three key population communities). We used these three different referent groups for each key population to account for any gendered differences in background characteristics, disclosure behavior, or stigma experiences.

Participants specified whether they had consensually disclosed their status to different categories of people, such as husband/wife/partner, children, other family, friends, and coworkers. We used Chi-square tests and Fisher's exact tests to conduct bivariate analyses comparing disclosure behavior between each of the three key population groups with their respective comparator groups (i.e., FSWs compared with other women, MSM compared with other men, and Haitian-descent PLHIV compared with non-Haitian PLHIV who were neither FSWs nor MSM).

Participants reported on whether they experienced different types of enacted stigma in the last 12 months because of one's HIV status: social exclusion, harassment, stigma in HIV-specific healthcare services, and stigma in non-HIV-specific services. To assess social exclusion, participants reported whether they had had each of several experiences due to their serostatus: discriminatory remarks or gossiping by family members, or exclusion from social, family, or religious gatherings. To measure experiences with harassment due to their serostatus, participants reported whether they had ever been verbally abused, blackmailed, or physically harassed. For stigma in HIV-specific healthcare settings, participants reported whether they had had each of seven different experiences, such as denial of health services, or telling people about their HIV status without consent. Participants also reported whether they had had each of these experiences in non-HIV-specific healthcare services, in addition to whether they had had dental care denied due to HIV status (i.e., eight possible items measuring stigma in non-HIV-specific services).

To examine internalized stigma, we calculated participants’ mean scores using the previously validated Internalized AIDS-Related Stigma Scale, which consists of six yes/no items: first, it is difficult to tell people about my HIV infection; second, being HIV positive makes me feel dirty; third, I feel guilty that I am HIV positive; fourth, I am ashamed that I am HIV positive; fifth, I sometimes feel worthless because I am HIV positive; and sixth, I hide my HIV status from others [23]. We also examined participants’ experiences with stigma experienced in both HIV-specific and non-HIV-specific healthcare services.

To compare differences between each of the three key population groups and their respective referent groups, we used Chi-square tests and Fisher's exact tests to conduct bivariate analyses comparing the dichotomous measures of enacted stigma, and t tests for comparing continuous internalized stigma scores. As with the analyses for disclosure behavior, we compared stigma experiences among FSWs with that of other women. Likewise, MSM were compared with other men. Haitian-descent participants were compared with non-Haitian PLHIV who were not FSWs or MSM.

We conducted bivariate analyses using logistic regression to assess the relationship between different types of stigma (i.e., social exclusion, harassment, stigma in HIV-specific healthcare services, stigma in non-HIV-specific healthcare services, and internalized stigma) and two outcomes: having been told you ‘have an undetectable viral load or are virally suppressed’ in the past 12 months (hereafter referred to as ‘viral suppression’), and missing a dose of ART in the last 12 months due to fear of someone learning of HIV status. For those associations that were significant in bivariate analyses, we then conducted multivariate logistic regression analyses adjusting for age, education, relationship status, financial security (i.e., unable to meet basic needs in past 12 months), and years knowing HIV status, using robust standard errors to account for intracluster correlation within provinces. For the multivariate analyses among Haitian-descent participants, we also included sex assigned at birth in the logistic regression model.

Results

We interviewed 891 PLHIV, among whom 154 were MSM, 216 were FSWs, 90 of Haitian descent, and 447 did not identify with any of these three key populations. Compared with other men, significantly fewer MSM were in intimate relationships (44 versus 57%). In contrast, significantly more FSWs were in intimate relationships compared with other women (67 versus 60%), and a significantly larger proportion of FSWs were caregivers to children (81 versus 74%). Compared with other men, MSM were more highly educated (79% attaining at least secondary education, compared with 41% among other men), had more stable employment (45% employed full-time compared with 30%), and had lower levels of financial insecurity (59% of MSM felt they were unable to meet basic needs, compared with 64%). A significantly larger proportion of FSWs reported being unemployed, compared with other women (55 versus 49%). PLHIV of Haitian descent had significantly lower educational attainment (28% completing secondary education, compared with 42% among non-Haitian PLHIV). Nearly all participants were currently on treatment, though those of Haitian descent had a significantly lower proportion who were on treatment, compared with non-Haitian participants (90 versus 98%). FSWs and Haitian-descent participants reported significantly lower levels of viral suppression, compared with their respective referent groups (53% among FSWs versus 66% among other women; 33% among Haitian-descent PLHIV versus 63% among non-Haitian PLHIV). Likewise, more FSWs, MSM, and Haitian-origin participants had missed an ART dose in the past year, out of fears of others learning their HIV status, compared with other women, other men, and non-Haitian PLHIV (Table 1).

Table 1
Table 1:
Sociodemographic and background characteristics, by subpopulation.

Among those who currently had partners, a significantly smaller proportion of MSM had disclosed to a husband/wife/partner compared with other men (57 versus 84%). Similarly, among those with children, MSM were less likely than other men to have disclosed to children (10 versus 31%). A significantly smaller proportion of PLHIV of Haitian descent had disclosed to children, among those who had children in their care (12 versus 30% among non-Haitian PLHIV). Disclosure to ‘other family’ was significantly less common among MSM compared with other men (34 versus 70%). Likewise, Haitian-descent PLHIV were significantly less likely to disclose to other family compared with non-Haitian participants (36 versus 66%). Participants from all three key populations were significantly less likely to have disclosed to an employer, compared with their respective referent groups (FSWs: 7 versus 11% among other women; MSM: 5 versus 21% among other men; Haitian-descent: 1 versus 12% among non-Haitian) (Table 2).

Table 2
Table 2:
To whom participants have disclosed their serostatus.

Compared with other women, FSWs reported significantly higher levels of harassment due to their HIV status. For example, a larger proportion of FSWs had experienced at least one type of harassment on account of their HIV status (29 versus 20%). In addition, FSWs reported more internalized stigma than other women (internal stigma score 2.9 versus 2.7). FSWs also experienced stigma in healthcare services significantly more than other women. Nearly one-fifth (19%) of FSWs reported at least one stigmatizing experience in HIV-specific healthcare services, compared with 13% among other women. Similarly, 19% of FSWS had at least one stigmatizing experience in non-HIV-specific healthcare services, compared with 11% of other women.

Compared with other men, MSM did not report significantly different levels of social exclusion, harassment, or stigma in HIV-specific or non-HIV-specific healthcare settings, on account of their seropositive status. PLHIV of Haitian descent reported significantly lower levels of social exclusion due to their status, compared with non-Haitian PLHIV. Twelve percentage of Haitian-origin PLHIV reported at least one type of social exclusion experienced, compared with 29% among non-Haitian participants. Similarly, significantly fewer Haitian-descent participants had experienced at least one type of harassment due to their seropositive status, compared with non-Haitian participants (7 versus 18%) (Table 3).

Table 3
Table 3:
Experiences of social exclusion, harassment, stigma in healthcare services, and internalized stigma because of HIV status.

In bivariate logistic regression analyses, among the 447 participants who did not identify as FSWs, MSM, or of Haitian descent, those who experienced higher levels of stigma in non-HIV-specific services or who experienced greater internalized stigma had a higher odds of missing an ART dose. Those with greater internalized stigma also had lower odds of being virally suppressed. Internalized stigma also was associated with lower odds of viral suppression for participants of Haitian descent. For MSM, those who experienced greater stigma in HIV-specific services had significantly lower odds of reporting viral suppression. Neither social exclusion nor harassment significantly affected the outcomes of viral suppression or missed ART dose for any community (data not shown).

In multivariate logistic regression analyses of the significant associations observed in the bivariate analyses, among MSM, stigma experienced in HIV services was associated with having an undetectable viral load: MSM who reported a greater number of stigma experiences in HIV-specific services had a significantly lower odds of knowing they had undetectable viral load [adjusted odds ratio (AOR) 0.37, P < 0.05]. Among FSWs, PLHIV of Haitian descent, and non-Haitian PLHIV (i.e., those who did not identify with any of the three key population communities), neither internalized stigma nor stigma in healthcare services (HIV-specific or non-HIV specific) was significantly associated with having undetectable viral load (Table 4).

Table 4
Table 4:
Multivariate logistic regression analyses of associations between viral suppression and selected stigma experiencesa.

Higher internalized stigma scores were significantly associated with missing an ART dose among FSWs (AOR 1.26, P < 0.05) and among non-Haitian PLHIV who did not identify as FSWs or MSM (AOR 1.65, P < 0.001). For the three key population groups, experiencing stigma in either HIV-specific or non-HIV-specific healthcare services was not significantly associated with missing a dose. However, among the non-Haitian PLHIV, those who reported more stigmatizing experiences in non-HIV-specific healthcare settings had a significantly higher odds of missing a dose (AOR 1.27, P < 0.05) (Table 5).

Table 5
Table 5:
Multivariate logistic regression analysis of association between missed treatment dose and selected stigma experiencesa.

Discussion

The Stigma Index 2.0 afforded PLHIV in the Dominican Republic an empowering opportunity to collect and document information about their experiences with HIV-related stigma and discrimination. Led by the two flagship PLHIV networks in the country, unique to this data collection effort was the purposeful inclusion of three communities identified as key populations in the Dominican HIV response: MSM, FSWs, and people of Haitian descent, in addition to PLHIV who do not identify with any of these communities. Nearly all participants (98%) were currently on treatment – far exceeding the national estimate of 55% for the ‘second 90’ [8]. However, there was a large viral suppression gap across all communities. This shortcoming was most notable among participants of Haitian descent, among whom just one-third reported being told they were virally suppressed in the past year. In addition, fear of others learning their status led many participants across communities to miss an ART dose in the past year. Again, this experience was most pronounced among PLHIV of Haitian descent.

FSWs reported the highest levels of enacted stigma, and they were the only community that reported experiencing significantly greater levels of HIV-related verbal and physical harassment, compared with their referent group (i.e., other women). As women who sell sex whose livelihoods place them at great risk of violent confrontations by clients and law enforcement officers [5], they would have more occasion to face verbal or physical assault on account of their seropositive status. In contrast, MSM reported the lowest levels of enacted stigma among the three key population groups. These men also were of higher socioeconomic status than the rest of the participants, which may have conferred some protective benefit from HIV-related stigma. The nuanced interplay between socioeconomic status and HIV-related stigma among key populations has been demonstrated in other contexts [24].

The lower levels of HIV-related enacted stigma reported by PLHIV of Haitian descent echoes a related finding from a study of communities in rural Dominican sugar company towns (bateyes), in which Murphy and colleagues reported that people of Haitian descent who lacked citizenship status perceived less HIV-related discrimination in their communities, compared with citizens. In explaining this finding, the authors posit that there may be greater social cohesion among oppressed noncitizens, which may insulate them from perceiving HIV-related stigma [25]. In addition, in Dominican society's deeply racialized social hierarchy, PLHIV of Haitian descent may not readily attribute discriminatory experiences to their seropositive status, as opposed to anti-Haitian sentiment. The cognitive complexity and conceptual limitations of teasing out race-based discrimination from other types of discrimination has been documented extensively in literature on intersectional discrimination among women of color in the United States, for instance [26]. Similarly, there was no association between HIV-related stigma and either viral suppression or missed ART dose among participants of Haitian descent. The stateless, undocumented status of many of these individuals may inhibit healthcare utilization more than HIV-related stigma. Since the standardized Stigma Index 2.0 survey instrument did not include questions about citizenship, we are unable to consider whether the lower levels of viral suppression and higher missed doses may be associated with lack of documentation among Haitian-origin participants.

One limitation of this study was the peer-to-peer and network-based recruitment strategy, which most likely led to a study sample that was disproportionately connected to psychosocial and/or clinical support. This limits the generalizability of these findings, particularly with regard to the Haitian-origin participants. In addition, since this survey was conducted using the Spanish translation of the original English version of Stigma Index 2.0, bilingual study staff who interviewed participants who preferred to speak in Haitian Creole conducted spontaneous oral translations of the survey questions. This could have created translation errors or inconsistencies in wording.

Conclusion

The shortfall in achieving the ‘third 90’ of viral suppression remains substantial among PLHIV in the Dominican Republic. As expected, this gap is more pronounced among key populations living with HIV. For FSWs and MSM, efforts to mitigate HIV-related stigma will help close this gap. PLHIV of Haitian descent reported the lowest levels of viral suppression, which may be attributable less to HIV-related stigma than to race-based and ethnicity-based stigma confronted by people of Haitian origin in the Dominican Republic, regardless of their HIV status. To alleviate the HIV burden in this community, interventions must address not only their HIV-specific needs, but also the broader social, legal, and political barriers that inhibit them from accessing the healthcare information and services that they need.

Acknowledgements

D.A., F.G., A.D., A.C., Y.D., and E.Y. contributed to study conception, study design, and protocol development. D.A., F.G., and A.D. provided technical and managerial oversight over the data collection activities. E.Y., T.M., and J.P. led data analysis and article preparation. All authors contributed to article review and refinement.

The current work was supported by Project SOAR (Cooperative agreement AID-OAA-A-1400060), made possible by the generous support of the American people through the United States President's Emergency Plan for AIDS Relief (PEPFAR) and United States Agency for International Development (USAID). The contents of this article are the sole responsibility of the authors and do not necessarily reflect the views of PEPFAR, USAID, or the United States Government.

Conflicts of interest

There are no conflicts of interest.

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Keywords:

Dominican Republic; female sex workers; Haitian; HIV; key populations; MSM; stigma

Copyright © 2020 The Author(s). Published by Wolters Kluwer Health, Inc.