A Systematic Review of the Impact of HIV-Related Stigma and Serostatus Disclosure on Retention in Care and Antiretroviral Therapy Adherence Among Women with HIV in the United States/Canada

Abstract

This systematic review explores the roles of HIV stigma and disclosure of HIV serostatus in antiretroviral therapy (ART) adherence and retention in care (RIC) among women with HIV (WHIV) in the United States and Canada. We conducted a systematic search of electronic databases (PubMed, Embase, CINAHL, PsycINFO, and Google scholar) to identify peer-reviewed articles published between January 1996 and December 2022. The search yielded 1120 articles after duplicates were removed. Of these, 27 articles met the inclusion criteria. The majority (89%) of the studies were conducted in the United States. The studies included WHIV from diverse racial/ethnic groups, residing in both urban and rural areas. Most of the studies suggested that internalized stigma, perceived community stigma, and fear of disclosure were important barriers to ART adherence and RIC among WHIV. HIV-related stigma experienced within the health care setting was also reported as a factor impacting health care utilization. A few studies identified mental health distress as a potential mechanism accounting for the association and suggested that social support and resilience may buffer the negative effects of stigma and disclosure on ART adherence and RIC among WHIV. Our review indicates that stigma and concerns about disclosure continue to significantly affect HIV health outcomes for WHIV in high-income countries. It underscores the importance of integrated HIV care services and interventions targeting mental health, resilience building, and improved patient–provider relationships for WHIV to enhance ART adherence and RIC. Longitudinal studies and investigations into additional mechanisms are needed to advance understanding and inform women-centered interventions.

Introduction

As of 2020, ∼1.1 million people in the United States,¹ and about 63,000 people in Canada² were living with HIV. HIV/AIDS remains a major public health issue in both countries.^1,2 In 2020, women accounted for 18% of newly diagnosed HIV infections in the United States,¹ and an estimated 29% of new HIV diagnoses in Canada,³ with the primary mode of transmission among women attributed to heterosexual contact.^1,2 Although HIV incidence has decreased since the peak in the early 1990s,^4,5 there has been a gradual shift in the gender distribution of new HIV diagnoses in these two countries before the COVID-19 pandemic in 2019.^3,6 Specifically, between 2016 and 2019, the annual rate of new HIV diagnoses slightly increased among women in Canada (2.8 in 2016 vs. 3.4 in 2019 per 100,000) and remained relatively stable among women in the United States (4.9 in 2016 vs. 4.5 in 2019 per 100,000), while decreasing among men (9.2 in 2016 vs. 7.9 in 2019 per 100,000 in Canada; 23.5 in 2016 vs. 21.0 in 2019 per 100,000 in the United States).^6,7 Certain racial/ethnic groups of women in the United States and Canada are more vulnerable to HIV infection. In the United States, Black/African American and Hispanic/Latina women are disproportionately affected by HIV,^1,6 while in Canada, Indigenous (First Nations, Inuit, Métis or Indigenous, not otherwise specified) and Black women face a higher risk of contracting the virus.^3,7

There are also race and ethnic disparities in the experience of HIV-related stigma among women with HIV (WHIV) as studies have revealed that Black, Aboriginal, Asian, and Latina WHIV in Canada, as well as Black and Hispanic/Latina WHIV in the United States, experience higher levels of HIV-related stigma compared with their White counterparts.^8,9

The introduction of antiretroviral therapy (ART) has significantly improved the health outcomes, quality of life, and life expectancy for people with HIV (PWH).¹⁰ A wealth of evidence has shown that PWH who are retained in care and maintain optimal ART adherence have lower HIV viral loads, which is critical in decreasing the risk of HIV transmission to others, especially maternal-to-child transmission during pregnancy, labor, delivery, and breastfeeding.^11–14 Retention in care (RIC) refers to the regular engagement of patients with HIV health care services, including sustained regular medical visits,^10,15 and ART adherence refers to the extent to which an individual takes the ART medications correctly and in a timely manner as prescribed by a health care provider.^16,17 Maintaining high levels of retention in care and ART adherence is vital for effective HIV management and preventing disease progression.¹⁸

Further, nonadherence to ART medication results in the development of viral mutations that confer drug resistance leading to treatment failure and increased risk of comorbidities such as tuberculosis and Pneumocystis pneumonia.^19,20

Globally, female gender is associated with reduced access to care, lower adherence to ART, and decreased viral suppression.^21–25 Despite widespread availability of ART, the universal health coverage in Canada with provision of free HIV/AIDS care in most provinces,^26,27 and the US Ryan White HIV/AIDS Program that provides high-quality HIV care services to low-income PWH at little or no cost,²⁸ WHIV continue to face unique challenges in accessing care, remaining engaged in care, and adhering to ART.²⁹ These challenges stem from the disproportionate burden of socioeconomic inequality,^30,31 societal gender role (e.g., childcare and household responsibilities),^32,33 intimate partner violence,³⁴ cultural norms/beliefs³⁵ that potentially influence HIV-related stigma, and lack of disclosure.^34,35 Studies have shown that HIV-related stigma and nondisclosure of HIV status have persisted as major psychosocial factors undermining positive HIV-related health behavior for better health outcomes among PWH.^36,37

HIV-related stigma is the discrediting, discounting, and discrimination against PWH that may lead to devalued identity and negative self-perception.^38,39 HIV stigma can manifest in different forms, including anticipated (expectation of mistreatment); enacted (actual discrimination or prejudice); internalized stigma (acceptance of negative beliefs and self-deprecating feeling); and perceived community stigma (belief about the existence and extent of societal stigmatizing attitudes).^40–42 Stigma affects both men and women with HIV.^39,43,44 However, data from the US Centers for Disease Control and Prevention (CDC)'s Medical Monitoring Project (MMP)^8,44 and studies conducted in Canada^9,39 indicate that WHIV experience significantly higher total HIV-related stigma compared with men. WHIV, especially those residing in regions with conservative social values, encounter stigma within their communities, households, and in health care settings as a result of societal beliefs about moral decadence attached to PWH such as sexual promiscuity and intravenous drug use, and the misconception about how HIV infection is acquired.^33,45–49

Further, studies have consistently linked HIV-related stigma to mental health difficulties, including increased anxiety and depressive symptoms, that ultimately worsen the health outcomes of WHIV.^50–52

HIV-related stigma is also found to be a barrier to disclosure of seropositive status.^53,54 Nondisclosure of HIV status may deprive WHIV the practical and emotional social support needed to ameliorate the adverse effect of stigma and encourage medication adherence and retention in care.^33,47,55 However, HIV status disclosure is a complex and dynamic phenomenon due to the unpredictable reaction/response of the recipient of the information who becomes aware of the patient's seropositive status.⁵³ Thus, findings on the effect of HIV-status disclosure on HIV-health behaviors have been mixed. Several studies have shown that the disclosure of HIV status provides the opportunity for PWH to garner social support from family members/friends/sexual partner.^47,56,57 This support strengthens the individuals' ability to remain engaged in care and facilitates ART adherence, as they are able to take ART freely without fear or worries of unintentional disclosure of their status.^47,56,57

Most importantly, disclosure of one's seropositive status decreases the risk of HIV transmission by increasing the likelihood of safe sex discussions and promotes safer sex practices among serodiscordant couples.^58,59 On the contrary, other studies reported that HIV disclosure elicited negative consequences, including discrimination and social isolation.^33,45 As a result of the potential stigmatization after disclosing their status, WHIV may conceal their seropositive status from their intimate partners or family members for fear of rejection, intimate partner violence, abandonment, lack of social or financial support, and being negatively judged.^31,47,60

Reviews of studies about the relationship between HIV-related stigma, disclosure, and HIV-health outcomes are well-explored in high-income countries (HICs), but most of these reviews are focused on PWH in general^36,61 or the population of men who have sex with men.^62,63 While several reviews exist exploring experiences of stigma for WHIV in low- and middle-income countries (LMICs),^64–66 we identified only one review, published in 2017, about WHIV in the United States.⁶⁷ That review specifically focused on HIV-related stigma among WHIV in the southern United States.⁶⁷ The current systematic review was limited to studies conducted among WHIV in the United States and Canada due to the geographic proximity of the two countries, similarities in the time line of the HIV/AIDS epidemic^68,69 and treatment regimens,^70,71 and both being HICs.⁷²

The objective of this study was to systematically review and synthesize the extant literature on the roles of HIV-related stigma and serostatus disclosure in ART adherence and retention in care among WHIV in the United States and Canada. A secondary objective was to review and synthesize findings from this literature on the plausible mechanisms underlying the relationship between these psychosocial factors and HIV health outcomes.

Theoretical Framework

This study draws upon existing HIV-related stigma frameworks^41,42 and the disclosure process model⁵³ to understand the complex interplay between HIV-related stigma and HIV-status disclosure or nondisclosure and their impact on HIV-related health behaviors and outcomes. The conceptual HIV stigma frameworks identify different dimensions of individual-level HIV-related stigma—perceived community stigma, enacted stigma, internalized stigma, and anticipated stigma—and conceptualize the mechanism (interpersonal factors, psychological resources, mental health, stress process) through which the individual-level HIV-related stigma dimensions differentially lead to decreased ART adherence and nonretention in care, and worsened HIV-related health outcomes (CD4 count and viral load).^41,42

While Turan et al.'s conceptual framework primarily focuses on the effect of dimensions of HIV-related stigma at the microlevel,⁴¹ the framework also integrates the concept of intersectionality. The intersectionality theoretical framework underscores the interdependence of individuals' social identities (race, socioeconomic class, gender, sexuality) at the microlevel and macrolevel to produce health inequalities.^41,73 This concept is applied in HIV research to understand how the experiences of stigma originating from multiple devalued social identities interact with HIV-related stigma to negatively affect the health of PWH.^9,41

Chaudoir et al.'s disclosure process model postulated that two distinct antecedent goals, namely: approach and avoidance goals, influence the disclosure likelihood of a concealable stigmatized illness such as HIV/AIDS, and the subsequent outcomes following the disclosure events.⁵³ In a nutshell, the disclosure process model explains a causal prediction pathway from the disclosure decision-making to the downstream health outcomes, through mediated processes (e.g., alleviating inhibition, social support, changes in social information) that may be beneficial or detrimental to the well-being of the discloser. Approach goals are factors (e.g., disease progression, significant trusted relationship, desire to educate others) that contribute to the likelihood of PWH disclosing their HIV-positive status, and these goals are focused on achieving a positive outcome (e.g., decreased psychological distress). Conversely, avoidance goals are factors that underlie nondisclosure and are focused on avoiding the negative consequences of seropositive disclosure.⁵³ HIV-related stigma is a major contributing factor of avoidance goals.⁵³

Methods

Study protocol design and registration

This systematic review was conducted and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA).⁷⁴ To avoid replicating previous work, a preliminary search was conducted on PROSPERO and the Cochrane Database of Systematic Reviews to ensure that a similar study has not been done. A protocol was drafted in advance and registered with the International Prospective Register of Systematic Reviews (PROSPERO: CRD42022345943). The original protocol was slightly modified by extending the search date of published articles up to December 2022 and broadening our review's scope to include mixed-methods studies to enhance the comprehensiveness and robustness of our systematic review.

While our study is focused on adults aged 18 years or older, we acknowledged that the Canadian studies in our review included participants ≥16 years of age.^75–77 We decided to retain these studies because their exclusion would have resulted in a lack of studies conducted in Canada in our review.

Study eligibility criteria

Articles were included if the following inclusion criteria were met: (a) original quantitative (cross-sectional and cohort studies), qualitative, or mixed-methods studies published in a peer-reviewed journal; (b) research conducted in Canada or the United States; (c) assessed HIV stigma and/or HIV disclosure association with ART adherence and/or retention in care or cited HIV stigma and/or HIV disclosure as factors impacting ART adherence and/or retention in care; (d) participants were women (≥18 years) diagnosed with HIV or study among adults diagnosed with HIV that reported gender-specific findings. We excluded experimental/interventional studies, systematic or scoping reviews, conference abstracts, and protocols.

Data sources

We conducted an extensive electronic search on PubMed, CINAHL Plus with Full Text (EBSCOhost), PsycINFO, Embase (Elsevier), and Google scholar for peer-reviewed studies. We also included relevant articles further identified from the reference list of retrieved articles.

Search strategy

We used a search strategy that involved combining control subject headings and keywords related to (a) human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS), (b) HIV stigma, (c) serostatus disclosure, (d) ART adherence, (e) retention in care, (f) women with HIV, (g) people with HIV, and (h) USA and Canada, across the selected databases and search engine using BOOLEAN Operator to help specify the search terms (see Supplementary Table S1 for more details). We limited our search to studies published in English-language journals from January 1996 (the year when highly active ART became the standard care for people with HIV)⁷⁸ through December 2022.

Study selection

The first author (E.S.N.) conducted the initial database searches for the identification of articles. Retrieved citations were imported into the Covidence systematic review software where duplicates were identified and removed. Afterward, two reviewers (E.S.N. and A.G.) independently screened all titles and abstracts, and articles considered relevant to the current study were retrieved in full text. Abstracts whose full text were not found after rigorous search were excluded (n = 2). The selected full-text articles were screened by two reviewers (E.S.N. and A.G.) for eligibility based on the inclusion criteria. Research studies that failed to meet the predetermined inclusion criteria were excluded, and the reasons for the exclusion were documented. Disagreement between the two reviewers (E.S.N. and A.G.) during any phase of the screening process was resolved by consensus. If a consensus could not be reached, discrepancies were resolved with the last author (M.J.T.).

Data extraction

One of the reviewers (E.S.N.) extracted relevant data information from the included articles using the Microsoft Excel spreadsheet, and the second author (A.G.) verified the extracted data. Disagreements were resolved by discussion between the two reviewers, and the last author (M.J.T.) was consulted when necessary. The variables extracted from each of the included articles were study author(s), publication year, study design, source of study data, study location, study population, sample size, participant characteristics (race/ethnicity), HIV-stigma/serostatus disclosure/RIC/ART adherence instruments and measurements, and study findings.

Study risk-of-bias assessment

The reviewers (E.S.N. and A.G.) independently evaluated the quality of each study included in the systematic review using the validated Critical Appraisal Skills Programme (CASP),⁷⁹ Joanna Briggs Institute (JBI) critical appraisal checklist tool,⁸⁰ and Mixed-Methods Appraisal Tool (MMAT)⁸¹ for qualitative, quantitative (cross-sectional and cohort studies), and mixed-methods studies, respectively. These well-validated tools have relevant core criteria for each study design, rated accordingly as “yes,” “no,” “unclear,” or “not applicable” (JBI tool) and “yes,” “no,” or “can't tell” (CASP and MMAT). The overall quality assessment of the included studies was summarized using the descriptors “low,” “medium,” and “high.” Studies that met all the criteria of their respective assessment tools were classified as “high quality,” studies that did not meet one to two criteria were classified “medium quality,” while studies that did not meet three or more criteria were rated as “low quality” (Supplementary Table S2 and Supplementary Fig. S1).

No study was excluded based on the quality of the study method. We resolved disagreements through consultation with the last author (M.J.T.).

Results

Study selection

Our initial literature search against the databases and search engine yielded 1606 references (PubMed = 577; CINAHL = 274; PsycINFO = 92; Embase = 533; and Google scholar = 130). After duplicates (n = 486) were removed, 1120 peer-reviewed studies remained. Titles and abstracts were then screened, and 1090 studies deemed irrelevant to the objective of this review were removed. The full text of 2 studies could not be retrieved and they were excluded from full-text review, and thus, a total of 28 articles were identified for full-text review. Twelve additional studies were found through a manual citation search of the identified articles. All the identified full-text articles were carefully reviewed, and 13 articles were further excluded based on inclusion criteria. Twenty-seven published articles were subsequently considered for our final review.

The summary of the process of screening, inclusion, and exclusion of articles is illustrated using the PRISMA flowchart (Fig. 1) for reporting items for systematic reviews.

FIG. 1.

Flowchart showing selection process of included studies. ART adh., antiretroviral therapy adherence; RIC, retention in care.

Study characteristics

All studies included in this review were conducted between 2003 and 2022. Twenty-four (89.0%) of the studies were conducted in the United States^{31,33,45–49,52,54,82–96} and the remaining three studies (11.0%) were conducted in Canada.^75–77 The 27 studies reviewed comprised 13 quantitative,^{52,75–77,82–88,94,95} 10 qualitative,^{31,33,46,47,49,54,89–91,96} and 4 mixed-methods studies.^45,48,92,93 All Canadian studies in our review used a quantitative study design. Of the quantitative and mixed-methods studies, 14 were cross-sectional^{45,48,75–77,83,85–88,92–95} and 3 were longitudinal^52,82,84 study designs.

Data sources of the 17 studies that reported quantitative findings included the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS),^75–77 Women's Interagency HIV Study (WIHS) of women living in the United States,^{48,52,85,87,92,95} International Nursing Network for HIV/AIDS Research Study V,⁸⁶ Unity study,⁸³ and CDC's MMP,⁹⁴ while 5 studies utilized primary data sourced from publicly funded or nonprofit HIV/AIDS care clinics, hospitals, or HIV care/support service organizations.^{45,82,84,88,93} For the 14 studies with qualitative findings, 4 studies utilized focus group interviews,^31,48,49,89 7 studies conducted in-depth semistructured interviews,^{33,45,47,91–93,96} 1 study used field notes of the trained research assistants (registered nurses),⁵⁴ and 2 studies used a focus group⁴⁶ or journal entries⁹⁰ in combination with in-depth, semistructured interviews. The summary of the synthesis of the quantitative/mixed-methods and qualitative studies is shown in Tables 1 and 2, respectively.

Table 1.

Summary of Synthesis of Quantitative and Mixed-Methods Studies

First author (year published)	Study location	Study design	Data source, sample size (N), and population characteristics	Stigma type/measure and HIV disclosure measure	ART adherence measurement/ cutoff point	RIC measurement	Findings relevant to our study
Fletcher et al. (2020)92,a	USA	Convergent parallel mixed-methods design: QT = Cross-sectional QL = Qualitative design	WAVE substudy (subsample from WIHS) (San Francisco, CA, Atlanta, GA, Birmingham, AL and Jackson, MS WIHS sites). QT: Qualitative interviews N = 420 Non-Hispanic Black (76%) Non-Hispanic White (14%) Hispanic (6%) Other non-Hispanic (4%) QL: N = 76 Non-Hispanic Black (59%) Non-Hispanic White (26%) Hispanic (7%) Other non-Hispanic (8%)	Stigma measure: IHS. 7-item negative self-image subscale from revised HIV Stigma Scale.97,103 HIV disclosure measure: N/A	Single-item self-reported question on frequency of medication intake. Optimal adherence defined as ≥95%	N/A	QT: (1) IHS was associated with a decrease in adherence (AOR = 0.63, 95% CI: 0.40–0.98) in a multi-variable logistic regression, adjusting for age, race/ethnicity, education, illicit drug use, and time on ART. (2) IHS moderated effect of resilience on ART adherence (β = −0.58, AOR = 0.56, 95% CI: 0.33–0.93, p = 0.03). QL: The participants mentioned various resilience strategies that foster health-promoting behaviors (i.e., ART adherence)
Kalichman et al. (2020)82	USA	Longitudinal	Audio computer-administered self-interviews, monthly telephone interviews, and medical records chart abstraction at a publicly funded HIV clinic in Georgia. N = 251 (PWH: Men = 175, Women = 76) White (12.7%) African American (82.9%) Other (4.0%).	Stigma measure: Enacted stigma. 7-item stigma experiences related to family relationships, experiences of discrimination, and denial of services, including health care subscale; Adapted from HIV Stigma Mechanisms Scale42,100 HIV disclosure measure: N/A	N/A	18-month assessment of medical records for appointments scheduled, attended, and not attended (retrospective chart reviews over 12-month duration of study assessment and 6 months postassessment period). Disengaged from care defined as missed appointments over 6 months.	In a Poisson regression model (controlling for age, distance from clinic, depression scores, and alcohol use): (1) Number of stigma experiences during the year was significantly associated with RIC (Wald's χ2 = 11.8, p < 001). (2) Women (mean = 2.9, SD = 7.4) reported a greater number of stigma experiences than men (mean = 2.4, SD = 5.1) (Wald's χ2 = 6.8, p < 0.01). (3) Interaction between RIC and gender was significant (Wald's χ2 = 10.4, p < 0.01). Women who disengaged from care experienced marginally more stigma events (mean = 3.20, SD = 9.71) than women retained in care (mean = 2.82, SD = 6.45).
Kronfli et al. (2017)75	Canada	Cross-sectional	CHIWOS N = 1313 WHIV White (40.4%) Indigenous (21.9%) African/Caribbean/Black (30.3%) Other (7.4%)	Stigma measure: HIV Stigma Scale103 comprised personalized HIV stigma, HIV disclosure stigma, negative self-image HIV stigma, and public attitudes HIV Stigma Subscale.	N/A	3 levels of engagement in care: (1) Not engaged in HIV care (HIV medical care not received in past year) (2) Never accessed HIV care (3) Delayed linkage to HIV care (>3 months between time of diagnosis and first access)	In univariate logistic regression (1) Not engaged in HIV care was not associated with any HIV stigma dimension. (2) Never accessed care was associated with personalized HIV stigma (OR = 1.06, 95% CI: 1.02–1.11), negative self-image HIV stigma (OR = 1.04, 95% CI: 1.91–1.08), and public attitudes HIV stigma (OR = 1.14, 95% CI: 1.05–1.24). (3) Delayed linkage to care was only associated with disclosure HIV stigma (OR = 0.98, 95% CI: 0.96–1.00). (4) HIV stigma dimensions no longer retained their effects with never accessed care and delayed linkage to care in multi-variate analyses.
Lipira et al. (2019)83	USA	Cross-sectional	Unity study (Baseline data of participants recruited from 3 HIV care clinic sites in Chicago, Illinois, and Birmingham, Alabama). N = 100 (African American WHIV)	Stigma measure: Combined enacted and internalized stigma. Adapted 14-item SSCI.102 HIV disclosure measure: N/A	Nonadherence to ART: Self-reported number of days of missed ART doses in the past 30 days.	N/A	Using serial mediation analysis of primary model (1) HIV-related stigma was not associated with ART nonadherence (p = 0.89), after controlling for depressive symptom severity. (2) HIV-related stigma had a statistically significant direct effect on viral suppression (β = −0.085, 95% CI: −0.145 to −0.025), but the indirect effects through the mediators (depressive symptom severity and ART nonadherence) were not significant.
Logie et al. (2018)76	Canada	Cross-sectional	CHIWOS N = 1425 (WHIV) White (41.5%) Indigenous (22.32%) Black (29.33%) Other (7.30%)	Stigma measure: Wright's shortened 10-item version HIV Stigma Scale (Cronbach's α = 0.85).104 Included personalized stigma, negative self-image stigma, and public attitudes stigma. HIV disclosure measure: 6-item HAT-QOL subscale regarding disclosure practices among HIV-positive people (Cronbach's α = 0.95).	Self-reported best estimate about medication intake in the past month from 0% to 100%. Cutoff point: 90%	N/A	(1) In bivariate logistic regression, personalized stigma (OR = 0.98, 95% CI: 0.96–0.99), negative self-image stigma (OR = 0.97, 95% CI: 0.96–0.99), and public attitude stigma (OR = 0.97, 95% CI: 0.94–0.99) were associated with lower odds of >90% adherence. These significant effects were not retained in the multi-variate analyses. (2) No HIV stigma dimensions had a significant direct effect on adherence in the SEM. Depression fully mediated the pathways from personalized HIV-related stigma (β = −0.014, p < 0.05) and negative self-image HIV stigma (β = −0.045, p < 0.001) to >90% ART adherence. (3) HIV disclosure concerns were not associated with ART adherence in either bivariate or multi-variate analyses and had no mediating effect.
Mellins et al. (2003)84	USA	Longitudinal	Questionnaire and interviews of participants recruited in waiting room of a large, inner-city infectious disease medical center. N = 128 WHIV completed baseline interview N = 113 WHIV completed first follow-up (FU1) N = 97 WHIV completed second follow-up (FU2) Black (58%) Hispanic (35%) Other race/ethnicity (7%).	Stigma measure: N/A HIV disclosure measure: Participants were asked to identify family members, including children and household members to whom participants had disclosed their HIV status.	Adherence was measured as a percentage of missed pills in past 2 days using modified self-report instrument developed by the Adult AIDS Clinical Trials Group.108	Adherence to medical services—participants were asked to recall percentage of medical appointments (0%, 25%, 20%, 75%, or 100%) attended in the past 6 months. Responses were dichotomized into 0–75% attained and 100% attained	(1) Less disclosure to family members at baseline was associated with poorer attendance to medical appointments in past 6 months at FU2 (OR = 6.62, 95% CI: 1.11–39.38, p = 0.04). (2) HIV disclosure was not significantly associated with reported missed pills at FU2 (FU2—OR: 0.35, 95% CI: 0.02–6.75, p = 0.49).
Relf et al. (2019)85	USA	Cross-sectional	WIHS (UNC site). N = 123 African American (75.6%) White (13.1%) Hispanic/Latina (8.9%) Native American/Alaskan Native (2.4%)	Stigma measure: HIV Stigma Scale97 included HIV-related enacted stigma (Cronbach's α = 0.95), HIV-related internalized stigma (Cronbach's α = 0.88), and HIV-related anticipated stigma (Cronbach's α = 0.86) subscales. HIV disclosure measure: HIV Disclosure Scale (WIHS measurement survey).	Medication adherence self-report for HIV care (Cronbach's α = 0.80).109	Engagement in care was measured with the Healthcare Utilization Scale (Cronbach's α = 0.71) (WIHS measurement survey).	(1) Bivariate analysis indicated that internalized stigma had a significant inverse relationship with ART adherence among women <50 years (r = −0.25, p < 0.05) and engagement in care among women ≥50 years (r = −0.39, p < 0.05). The relationships between the other dimensions of stigma with engagement in care or medication adherence were not significant. (2) In multi-group structural equation modeling, there were no significant direct or indirect effects (mediated effect) of HIV stigma dimensions or HIV disclosure on ART adherence or engagement in care. Internalized stigma was only dimension of HIV stigma directly associated with decreased HIV disclosure (β = −0.29, p < 0.005)
Turan et al. (2019)52	USA	Longitudinal	WIHS data from multiple sites (Bronx, Brooklyn, Washington DC, Chicago, Los Angeles, San Francisco, Atlanta, Birmingham, Jackson, Miami, and Chapel Hill) N = 965 African American (75%), White (14%), and Hispanic (14%).	Stigma measure: Internalized stigma (Cronbach's α = 0.86) Measured using a 7-item negative self-image subscale of revised HIV Stigma Scale.97,103 HIV disclosure measure: N/A	Self-reported questionnaire on frequency of medication intake as prescribed. Optimal adherence defined as ≥95%	N/A	(1) Multi-variable logistic regression: Higher IHS at Time 1 (T1) predicted lower adjusted odds of optimal ART adherence at time 3 (T3) (AOR = 0.61, 95% CI: 0.45–0.82, p = 0.001). The finding remained significant when ART adherence at T1 was added as a control variable (AOR = 0.64, 95% CI: 0.47–0.87, p = 0.005). (2) Mediation analysis: IHS at T1 had indirect effect on suboptimal ART adherence at T3 through mediating effect of depression symptoms at T2, controlling for depression symptoms and ART adherence at T1 (β = −0.05, SE = 0.03, 95% CI: −0.11 to −0.006)
Tyer-Viola et al. (2014)86	USA	Cross-sectional	International Nursing Network for HIV/AIDS Research, Study V N = 338 WHIV African American/Black (50%); non-Hispanic White (21%); Hispanic/Latino (16%); Asian/Pacific Islander (3%); Native American Indian (4%); other (4%).	Stigma measure: Overall stigma. 40-item perceived Stigma Scale (Cronbach's α = 0.95).103 HIV disclosure measure: N/A	Participants identified percentage (0–100%) of time medication was taken over 3 days and 30 days using the 3-day and 30-day visual analog scale.107 Nonadherence defined as <100%	N/A	(1) Bivariate analyses: stigma was inversely correlated with 3-day (r = −0.107, p < 0.05) and 30-day (r = −0.094, p < 0.05) medication adherence. (2) In logistic regression models, after adjusting for depression symptoms and health care provider engagement, HIV-related stigma was no longer associated with either 3-day (β = −0.017, SE = 0.047, p = 0.715) or 30-day (β = 0.011, SE = 0.050, p = 0.835) medication adherence.
Rice et al. (2019)48,a	USA	Mixed-methods design: QT: Cross-sectional. QL: Exploratory sequential approach.	WAVE multi-center substudy (Birmingham, AL; Jackson, MS; Atlanta, GA; and San Francisco, CA) QT: N = 460 WHIV non-Hispanic Black (77%); Hispanic (17%); non-Hispanic White (14%); other NH (4%) QL: Focus group interviews. N = 76 (WHIV) non-Hispanic Black (59%); non-Hispanic White (26%); other non-Hispanic (8%); Hispanic (7%)	Stigma measure: 24-item questionnaire (12-item for each subscale) adapted from Earnshaw et al.42 that assessed experienced HIV-related stigma (Cronbach's α = 0.92) and anticipated HIV-related stigma (Cronbach's α = 0.91) from 4 sources (health care personnel, family members, sexual/romantic partners, and community) within past year	Self-reported frequency of HIV medication(s) intake as prescribed over past 6 months. Adherence cutoff: 95% for optimal versus suboptimal adherence	N/A	QT: (1) Using logistic regression analyses: (a) In separate models, reported experienced HIV stigma (AOR = 0.59, p = 0.01) and anticipated HIV stigma (AOR = 0.65, p = 0.01) from health care settings, adjusting for experienced or anticipated stigma from other sources and other covariates, were significantly associated with suboptimal ART adherence. (b) When modeled together, only anticipated stigma in health care settings was significantly associated with adherence (AOR = 0.67, p = 0.04), controlling for all other sources of anticipated and experienced. (2) In the mediation analyses, lower adherence self-efficacy (β = −0.08, SE = 0.04, 95% CI: −0.17 to −0.03), higher depressive symptoms (β = −0.05, SE = 0.03, 95% CI: −0.13 to −0.01), and higher coping by substance use (β = −0.04, SE = 0.02, 95% CI: −0.10 to −0.001) individually mediated association between anticipated HIV-related stigma and lower ART adherence.
							QL: Women shared experienced and anticipated stigma in health care settings that discouraged continuing medical care and maintaining ART adherence. Concerns about disclosure of HIV status for fear of stigma within community also emerged as a reason for difficulty with initiating HIV care, skipped HIV care appointments, and suboptimal HIV treatment.
Kerkerian et al. (2018)77	Canada	Cross-sectional	CHIWOS N = 1424 (WHIV) cisgender (95.6%); transgender (3.8%); other identity (0.6%) Indigenous (22.3%); African/Caribbean/Black (29.4%); White (41.1%); other/multiple ethnicities (7.2%).	Stigma measure: Combined HIV stigma using a 10-item HIV Stigma Scale.103,104 HIV disclosure measure: N/A	Measured adherence using visual analog scale, with a cutoff of ≥90%.110	Self-reported receipt of HIV medical care in past year among participants who ever accessed HIV medical care.	HIV stigma was not associated with attrition at any cascade step (diagnosed, linked to care, retained in care, initiated ART, currently on ART, adherent to ART, and viral suppression)
Turan et al. (2019)87,b	USA	Cross-sectional	Study 2: WAVE substudy of the WIHS, a multi-site cohort study (San Francisco, CA, Atlanta, GA, Birmingham, AL, and Jackson, MS). N = 453 (WHIV)	Stigma measure: Perceived community HIV stigma (6-item on concern with public attitudes subscale; Cronbach's α = 0.86) and internalized stigma (7-item negative self-image subscale; Cronbach's α = 0.86) were measured using Bunn et al. revised HIV Stigma Scale97 HIV disclosure measure: N/A	One self-reported item on frequency of HIV medication(s) intake as prescribed over the past 6 months. Adherence cutoff: 95% for optimal versus suboptimal adherence	N/A	In a moderated mediation analysis: Perceived HIV stigma had an indirect effect on ART adherence through internalized stigma. The indirect effect was significantly moderated by 3 moderators—fear of negative evaluation (index = −0.08, SE = 0.05, 95% CI: −0.20 to −0.0004); attachment-related anxiety (index = −0.03, SE = 0.02, 95% CI: −0.09 to −0.002), and resilience (index = 0.07, SE = 0.05, 95% CI: 0.00–0.19).
Buchberg et al. (2015)93,a	USA	Mixed-methods design: QT: Cross-sectional QL: Exploratory sequential approach.	QT: survey with demographic and psychosocial questions from two county clinics in Houston, TX N = 35 (WHIV+pregnant) Black/African (77.1%) Hispanic (14.3%) White (5.7%) other (2.9%) QL: in-depth qualitative interview N = 21 (WHIV+pregnant).	Stigma measure: Internalized stigma. Measured using 10-item scale of Internalized Stigma of AIDS Tool.98 HIV disclosure measure: N/A	N/A	Medical records of postpartum care retention (obstetrician care within 3 months of delivery and PCP care within 6 months of delivery).	QT: In bivariate analysis, WHIV who reported lower mean internalized stigma score compared with higher mean score [mean (SD): 26.31 ± 9.63 vs. 33.00 ± 11.40; p = 0.07] displayed a tendency to achieve successful postpartum retention in care with PCP; however, association was not statistically significant. QL: Institutionalized stigma (experienced stigma in health care setting) was cited as a barrier to retention in care.
Davtyan et al. (2023)88	USA	Cross-sectional	Survey of WHIV obtaining care at a family centered HIV clinic in Los Angeles, CA N = 76 African American (24%) Hispanic/Latino (76%)	Stigma measure: Internalized stigma, measured with a validated 15-item Internalized HIV/AIDS-related stigma scale.99 HIV disclosure measure: N/A	6-point Likert scale (1 = very poor to 6 = excellent) single-item self-reported question on ART adherence in past 4 weeks.111	Medical record abstraction of measures of retention in care defined using the Health Resources and Services Administration performance measures.106	(1) Women who reported high internalized stigma were 18.8 times more likely to not be retained in care versus low internalized stigma (OR = 18.8, 95% CI: 1.9–189.2, p = 0.013), controlling for education and employment status in a multi-variable logistic regression. (2) Internalized stigma was not associated with self-reported ART adherence.
Sangaramoorthy et al. (2017)45,a	USA	Mixed-methods design: QT = Cross-sectional QL = Qualitative design using a social ecological approach	QT: survey questionnaire of participants recruited through clinics and referral in Prince George's County, MD. QL: semistructured interviews N = 35 older (≥40 years) Black WHIV	Stigma measure: 27-item modified stigma scale, adapted from the multi-dimensional measure of Internalized HIV Stigma Scale,101 which measured four domains: HIV stereotypes (Cronbach's α = 0.89), HIV disclosure concerns (Cronbach's α = 0.87), social relationship stigma (Cronbach's α = 0.91), and self-acceptance (Cronbach's α = 0.73) Total stigma scale (Cronbach's α = 0.94)	ART adherence was measured with four self-reported questions.	Two indicators were used to measure RIC: (a) “number of HIV-related care visits scheduled in the past year.” (b) “number of kept visits of the total scheduled visits for HIV-related care.”	QT = 80% of the sample reported any experience with HIV stereotypes; 71% reported any experience with HIV disclosure concerns; 74% reported any experience with stigma related to negotiating social relationships; and 91% reported any experience with self-acceptance stigma. The association between HIV-related stigma and ART adherence or RIC was not assessed. QL = Women reported decreased regular HIV care attendance and nonadherence to ART at younger age due to HIV-related stigma.
Bradley et al. (2019)94	USA	Cross-sectional	Combined 2013–2014 data cycles of the CDC MMP N = 1703 (non-Hispanic Black WHIV in care)	Internalized stigma and health care discrimination since being diagnosed with HIV measured using nine items from MMP. HIV disclosure measure: N/A	Measured using self-reported ART adherence in the past 3 days. Cutoff point for adherence = 100%.	N/A	(1) Bivariate analysis: women who were adherent to ART were more likely not to have experienced discrimination in a health care setting since HIV diagnosis (PR = 1.06, 95% CI: 1.00–1.11) and older (compared with aged 18–29 years). The association with internalized stigma was not significant. (2) In the multi-variate analysis, after controlling for age, country of birth, and HIV stage, women who had not experienced discrimination in a health care setting since HIV diagnosis remained significantly more likely to be adherent to ART (aPR = 1.06, 95% CI: 1.00–1.11).
Turan et al. (2016)95	USA	Cross-sectional	WIHS cohort data. N = 1168 (WHIV) non-Hispanic White (11.9%), non-Hispanic Black (67.5%), Hispanic (17.1%), other (3.5%)	Internalized HIV-related stigma measured with the 7-item negative self-image subscale of the revised HIV Stigma Scale (Cronbach's α = 0.91)103 HIV disclosure measure: N/A	ART adherence measured using self-reported item on frequency of HIV medication(s) intake as prescribed over the past 6 months. Adherence cutoff: 95% for optimal versus suboptimal adherence	N/A	(1) Logistic regression analysis (adjusting for age, time on ART, drug use, income, and education): IHS was a significant predictor of suboptimal adherence for racial/ethnic minority groups (AOR = 0.69, 95% CI: 0.52–0.91, p = 0.009) and not for non-Hispanic White (AOR = 2.15, 95% CI: 0.69–6.73, p = 0.19). (2) Serial mediation analysis with the racial/ethnic minority subsample: IHS predicts suboptimal ART adherence through sequential effects of (a) less social support and higher depressive symptoms (β = −0.03, SE = 0.01, 95% CI: −0.06 to −0.01); or (b) higher loneliness and higher depression symptoms (β = −0.07, SE = 0.02, 95% CI: −0.12 to −0.02).

^a Mixed-methods study.

^b Two different studies were conducted in the article using two different sample populations. Study 1 was not included in our article because the sample was mixed gender and analyses were not stratified by gender.

AOR, adjusted odds ratio; aPR, adjusted Prevalence Ratio; ART, antiretroviral therapy; CDC, Centers for Disease Control and Prevention; CHIWOS, Canadian HIV Women's Sexual and Reproductive Health Cohort Study; CI, confidence interval; HAT-QOL, HIV/AIDS quality of life; IHS, internalized HIV stigma; MMP, Medical Monitoring Project; N/A, variable was not assessed; PCP, primary care provider; PR, prevalence ratio; PWH, people with HIV; QL, qualitative; QT, quantitative; RIC, retention in care; SD, standard deviation; SE, standard error; SEM, structural equation model; SSCI, stigma scale for chronic illness; UNC, University of North Carolina at Chapel Hill; WAVE, Women's Adherence and Visit Engagement; WHIV, women with HIV; WIHS, Women's Interagency HIV Study.

Table 2.

Summary of Synthesis of Qualitative Studies

First author (year published)	Data source and study location	Study design	Method, sample size (N), and population characteristics	Findings relevant to our study
Kempf et al. (2010)89	Four outpatient clinics, southeast of Alabama, USA.	Descriptive inquiry approach.	Focus group interviews. N = 39 (WHIV) Black (92.3%) White (7.7%)	(1) HIV-related stigma was cited as a major barrier to adherence to clinic scheduled appointments. (2) Concerns about unintended disclosure of status to children and others in community. Some would prefer to miss scheduled clinic appointments than take their child to the clinic with them when childcare is unavailable.
McDoom et al. (2015)47	Primary care clinics in Metropolitan Boston area, USA.	Descriptive qualitative.	In-depth semistructured interviews N = 20 [older (≥50 years) Black WHIV]	(1) Anticipated stigma (feeling of fear, anxiety, or perception of discrimination due to their HIV-positive status), perceived stigma from medical provider, and being “outed” by seeking care at clinics identified as HIV or infectious disease health care facility results in nonengagement in care. (2) The fear and actual experience of rejection and lack of support from family members/friends after disclosing their status HIV impacted their ability to stay in care. (3) Many reported receiving adequate support after disclosing HIV status to family members/friends, which encouraged attendance of medical appointments.
Messer et al. (2013)46	Academic medical care clinic in North Carolina, USA.	Adapted the health care disparity model and the socioecological framework.	Focus groups and semistructured interviews. N = 30 (WHIV of color: n = 11 in focus groups and n = 19 in semistructured interviews) Focus groups: African American (91%), Puerto Rican Hispanic (9%) Semistructured interview: African American (85%), Puerto Rican Hispanic (9%), multi-racial (10%).	Barriers identified for entry to and remaining in care: internalized stigma (shame, guilt, and embarrassment), community-level stigma, and nondisclosure of HIV status to family members, lack of privacy or discretion at clinic level.
Ojukwu et al. (2022)33	Ambulatory care center/HIV clinic, South Florida, USA	Descriptive qualitative approach guided by socio-ecological model.	In-depth semistructured interviews. N = 17 [Black older (≥50 years) WHIV]	(1) Some women reported stronger bond with persons (family/friends) to whom they disclosed their HIV diagnosis, which aided engagement in care. Others reported experiencing discrimination and rejection from their families and friends, which deterred engagement. (2) WHIV who had not disclosed their HIV status as a result of perceived discrimination mentioned that fear of their confidentiality being violated hindered engagement in care. (3) Perceived or experienced HIV-related stigma within their communities was reported as hindrance to attending treatment appointment.
Walcott et al. (2016)31	Three HIV clinics and a residential facility in Birmingham, Alabama, USA.	Qualitative design guided by socio-ecological model.	Focus group interviews. N = 46 (low-income WHIV)	Perceived or experienced HIV-related stigma when utilizing HIV designated health care facilities, perceptions of poor treatment from health care providers, risk of unwanted disclosure of HIV status due to fear of stigmatization or discrimination or being ostracized by community were cited as barriers to optimal engagement in HIV health care.
Edwards (2006)90	Outpatient clinic, Baltimore, Maryland, USA.	Qualitative exploratory design.	Journal entries and semistructured interviews N = 20 (African American WHIV)	Perceived stigma and anticipation of stigma from friends/family resulted in participants missing doses or hide to take their drugs to prevent disclosing their HIV status.
Fletcher et al. (2016)91	Five clinics or AIDS service organizations in South Carolina, USA.	Phenomenological research design guided by socio-ecological model.	In-depth face-to-face semistructured interviews. N = 42 (African American WHIV)	Women reported experiencing perceived and enacted stigma after disclosing their status—family members deemed them unfit to care for their children, avoided close physical contact, and imposed use of disposable plates and cutlery. Community-level stigma discussed in the context of involuntary disclosure of status resulting in social isolation, discrimination, rejection, missed HIV care clinic appointments, and avoiding local pharmacies for HIV medication refills.
Ingram and Hutchinson (2000)96	Organizations involved in HIV care, southeastern United States.	Qualitative grounded-theory research design.	In-depth interviews N = 20 (WHIV) African American (40%), European American (55%), Hispanic (5%).	Women described (1) societal and health care provider condemnation and stigmatization regarding their reproductive choices, (2) worries about disclosing their HIV-positive status to their children, and (3) fear of attending HIV designated clinics and cancelation of HIV-care appointments due to fear of being seen, lack of privacy and potential threat of HIV-related stigma.
Black and Miles (2002)54	Two tertiary care infectious disease clinics and community agencies, southeastern United States.	Qualitative descriptive.	Nurses field notes. N = 48 (low-income African American WHIV)	(1) The anticipation of stigmatization by family members (e.g., may seek custody of children), church members (e.g., negative gossip, social isolation), and the community at large was a major concern for nondisclosure of HIV status. (2) Participant recounted breach of confidentiality and stigmatizing experiences with health care professionals that limit HIV care visits. (3) Some women revealed obtaining assistance with childcare and transportation to attend scheduled clinic appointments and managing their illness after disclosing.
Vyavaharkar et al. (2008)49	Two CBOs and a university-based research study of rural WHIV disease, South Carolina, USA.	Qualitative exploratory design guided by service utilization model.	Focus group interviews. N = 22 (African American WHIV)	HIV-related stigma and discrimination in the health care facilities were noted as barriers to accessing and using HIV-specific services.

CBOs, community-based organizations; WHIV, women with HIV.

The study sample sizes ranged from 35 to 1425 participants for the quantitative studies^45,76,93 and 17 to 76 participants for qualitative studies.^33,48,92 Of the 24 studies conducted in the United States, 9 studies sampled only Black/African American.^{33,45,47,49,54,83,90,91,94} The remainder of the US studies sampled from diverse racial/ethnic populations—Black/African American, non-Hispanic White, Hispanic/Latino, Asian/Pacific Islander, Native American Indian, European American, multi-racial, and other ethnicity. However, the majority of participants in these samples were Black/African American as well, ranging from 50% to 92.3%.^{46,48,52,82,84–86,89,92,93,95} Twenty-three of the US studies sampled only females with HIV, and only one study included both males and females with HIV.⁸² The three studies conducted in Canada sampled only WHIV,^75–77 with the largest percentage of participants being White women (40–42%), followed by African/Caribbean/Black women (29–30%), Indigenous women—First Nations, Inuit, Métis or Indigenous, not otherwise specified—(21–22%), and women of multiple ethnicities (7%).

Geographically, the majority (n = 21) of the study settings in the United States spanned across states in the southern region (Alabama, Mississippi, Georgia, Maryland, North Carolina, South Carolina, Florida, Texas). Other study settings were in the northeastern (New York and Boston); the western (San Francisco, California); and midwestern (Chicago, Illinois) regions; and 23 health jurisdictions in the CDC's MMP. All the Canadian studies in our review utilized data from CHIWOS, which recruited participants from British Columbia, Ontario, and Quebec.

Instruments and measurement

HIV-related stigma

The studies examined HIV-related stigma as a single domain or multiple domains. The instrument used in measuring these stigma domains varied across studies. Among the studies conducted in the United States, five studies^{52,88,92,93,95} assessed only internalized stigma using the revised HIV/AIDS Stigma Scale,⁹⁷ Internalized Stigma of AIDS Tool,⁹⁸ and the internalized HIV/AIDS-related Stigma Scale.⁹⁹ One study⁸² examined enacted stigma using the HIV Stigma Mechanisms Scale.^42,100 The remaining quantitative studies^{45,48,83,85–87,94} assessed multiple domains of stigma and the measures used were the revised HIV Stigma Scale,⁹⁷ HIV Stigma Mechanisms Scale,⁴² Multidimensional Measure of Internalized HIV Stigma,¹⁰¹ Stigma Scale for Chronic Illness,¹⁰² Berger's HIV Stigma Scale,¹⁰³ and MMP stigma and discrimination questions.⁹⁴ The three Canadian studies^75–77 assessed multi-dimensional HIV-related stigma measured using the shortened version of Berger's HIV Stigma Scale.^103,104

The qualitative studies explored HIV stigma using broad open-ended questions, rating questions, and probes to capture individual perspective and experience of stigma.^{31,33,45–49,89,91–93,96} Only two of these qualitative studies clearly stated that their instruments were piloted.^33,46

HIV disclosure

Three quantitative studies (one in Canada and two in the United States) specifically assessed the impact of HIV disclosure on ART adherence and RIC.^76,84,85 Two definitions of disclosure were used in measuring HIV disclosure. Two studies measured participants' concerns/worries about disclosure of their HIV status using the HIV/AIDS Quality of Life Subscale¹⁰⁵ and the HIV Disclosure Scale used in the WIHS survey.⁸⁵ The third study asked participants to identify family members, including children and household members, to whom they had disclosed their HIV status.⁸⁴ The structure of the in-depth interviews, questions, or probes used in all the qualitative studies allowed participants to discuss their disclosure experiences, including their decision to disclose or not to disclose their status and the disclosure recipient(s).

Retention in care

Eight quantitative studies [Canada (n = 2); United States (n = 6)] assessed RIC using different measures.^{45,75,77,82,84,85,88,93} Most of the studies used medical records to obtain evidence of medical visits.^75,82,88,93 Other studies used a self-report questionnaire measuring medical appointment attendance during the past 6 months⁸⁴ and receipt of medical care/number of medical care visits in the past year.^45,77 Additional measures included the Healthcare Utilization Scale⁸⁵ and Health Resources and Services Administration performance measures.¹⁰⁶ Eleven qualitative studies, all conducted in the United States, assessed RIC by exploring individuals' perspectives about the influence of HIV stigma and/or serostatus disclosure on the use of HIV care services and engagement in care.^{31,33,45–47,49,54,89,91,93,96}

ART adherence

Different ART adherence measures and reference periods (last 2 days,⁸⁴ 3 days,^45,77,86,94 7 days,⁴⁵ 4 weeks,⁸⁸ 30 days,^76,77,83,86 and 6 months^{48,52,87,92,95}) were used to estimate HIV medication adherence. These quantitative studies used a self-reported ART adherence measure, including the visual analog scale,^107,110 the Adult AIDS Clinical Trials Group (AACTG) ART adherence scale,¹⁰⁸ medication adherence self-report items for HIV care,¹⁰⁹ a single-item question on HIV medication intake frequency^{48,52,76,87,88,92,95,111} or number of days of missed ART doses.⁸³ Further, different cutoff points—90%,^76,77 95%,^{48,52,87,92,95} and 100%^86,94—were used to categorize ART adherence as optimal (vs. suboptimal). In other studies, ART adherence was analyzed as a continuous variable using the raw score of missed doses or mean score of the items.^83–85

Synthesis of results

Role of HIV-related stigma in retention in care and ART adherence

Multiple studies associated one or more HIV-related stigma dimensions with ART nonadherence and disengagement from HIV care. Among the US quantitative and mixed-methods studies, six studies examined a single HIV-related stigma dimension.^{52,82,88,92,93,95} Most of the studies assessed internalized stigma (n = 5). A longitudinal study established that internalized HIV stigma has a direct effect on ART adherence, with higher internalized HIV stigma predicting lower odds of optimal ART adherence [adjusted odds ratio (AOR) = 0.64, 95% confidence interval (CI): 0.47–0.87)].⁵² Two studies found no significant association between internalized stigma and ART adherence⁸⁸ or postpartum RIC;⁹³ however, one of these indicated that individuals who reported high levels of internalized stigma were 18.8 times more likely to not remain in care compared with those with low internalized stigma (OR = 18.8, 95% CI: 1.9–189.2, p = 0.013).⁸⁸

A study examining the cumulative effect of enacted HIV stigma experiences over a 1-year period on RIC among PWH found that participants who disengaged from care experienced a greater number of HIV-related stigma events.⁸² HIV stigma from family members and act of discrimination were the most reported experienced sources of stigma.⁸² Women reported more stigmatization events [mean = 2.9, standard deviation (SD) = 7.4] than men (mean = 2.4, SD = 5.1), Wald's χ² = 6.8, p < 0.01. Although there was no significant difference in enacted stigma experiences between women who remained in care and those who were disengaged, the number of enacted stigma events among women who dropped out of care was minimally higher (mean = 3.20, SD = 9.71) than those retained in care (mean = 2.82, SD = 6.45).⁸²

Seven US studies and all the three Canadian studies reported on multiple HIV-related stigma dimensions or the overall HIV-related stigma.^{45,48,75–77,83,85–87,94} Of the US studies, one study found that internalized stigma, but not enacted stigma or anticipated stigma, was inversely correlated with optimal ART adherence among women <50 years (r = −0.25, p < 0.05) and being engaged in care among women ≥50 years (r = −0.39, p < 0.05).⁸⁵ However, none of the HIV-related stigma dimensions was significantly associated with ART adherence or engagement in care when simultaneously assessed using a structural equation model.⁸⁵ Another study found a similar correlation between overall HIV-related stigma and 3-day (r = −0.107, p < 0.05) and 30-day (r = −0.094, p < 0.05) medication adherence, and also found no significant association in the logistic regression models after adjusting for depression and health care provider engagement.⁸⁶

The quantitative analyses in a mixed-methods study revealed a differential impact in the association between anticipated (AOR = 0.65, p = 0.01) or experienced (AOR = 0.59, p = 0.01) HIV-related stigma in health care settings with suboptimal ART adherence, adjusting for HIV-related stigma from other sources (family, sexual partners, and neighbors/others in the community) in a separate model.⁴⁸ Anticipated stigma remained significantly associated with ART adherence when the two forms of stigma were included in the same model (AOR = 0.67, p = 0.04).⁴⁸

Similarly, another study examining the relationship between health care discrimination since diagnosed with HIV, internalized stigma, and ART adherence found that WHIV who had not experienced discrimination in a health care setting are more likely to be adherent to ART [adjusted Prevalence Ratio (aPR) = 1.06, 95% CI: 1.00–1.11], and older women had a higher likelihood of adherence to ART compared with the younger women aged 18–29 years.⁹⁴ Internalized stigma was not significantly associated with ART adherence in the bivariate analyses.⁹⁴

Findings from one of the studies conducted in Canada showed that personalized stigma (OR = 0.98, 95% CI: 0.96–0.99), negative self-image stigma (OR = 0.97, 95% CI: 0.96–0.99), and public attitude stigma (OR = 0.97, 95% CI: 0.94–0.99) were associated with decreased likelihood of ART adherence, but the significant effects of these different HIV-stigma dimensions were not retained in the adjusted logistic regression after controlling for age, ethnicity background, immigrant status, relationship status, education level, history of injection drug use, and years with HIV.⁷⁶ In the other two Canadian studies,^75,77 HIV-related stigma dimensions (personalized stigma, HIV disclosure stigma, negative self-image stigma, public attitude stigma)⁷⁵ or overall HIV-related stigma⁷⁷ was not associated with engagement in care^75,77 and ART adherence.⁷⁷ However, one of the studies found a significant relationship between having never accessed HIV care and personalized stigma (OR = 1.06, 95% CI: 1.02–1.11), negative self-image stigma (OR = 1.04, 95% CI: 1.91–1.08), and public attitude stigma (OR = 1.14, 95% CI: 1.05–1.24), while delayed linkage to care was only associated with disclosure HIV stigma (OR = 0.98, 95% CI: 0.96–1.00).⁷⁵

In the qualitative studies, participants cited different forms of stigma (perceived stigma,^31,33,91 experienced stigma,^{31,33,47,48,91,93} anticipated stigma,^47,48,90 internalized stigma⁴⁶) or HIV stigma in general⁸⁹ as deterrents to medication adherence and engagement in care. In three studies that explored engagement in HIV care among older Black WHIV, most of the women reported anticipated stigma and stigmatizing attitudes from their medical providers,^33,45,47 which include providers' assumption of the patient being a drug user,⁴⁷ being negatively judged about their prior or current lifestyles,⁴⁷ experiences of rejection,⁴⁵ and provider avoiding touching the patient.³³ These women expressed that these stigmatizing experiences reduced their trust in their provider⁴⁷ and often interfered with their ability to seek or remain in HIV care.

Other HIV-related stigma experiences in the health care settings that emerged from the qualitative analyses were lack of compassion from the health care workers, unmet participant's medical needs or inattention to their medical concerns, unnecessary precautions (e.g., use of double gloves, avoiding physical proximity), violation of privacy, and lack of respect for participant's health care preferences, especially related to their childbearing decisions.^48,93,96 In addition to stigma in health care setting, perceived community stigma such as social isolation was another main subtheme that emerged from qualitative studies as the reason for difficulty initiating HIV care or skipping scheduled HIV care appointments.^{31,33,46,48,91}

Converging stigmas: the intersection of HIV-related stigma with social identity stigma

Some of the studies explored the intersection of gender-, race-, and poverty-related stigma in the context of HIV-related stigma and the impact on women's health. The qualitative studies conducted among racial/ethnic minority WHIV, low-income WHIV, and women from disadvantaged communities—that predominantly comprised Black and other race/ethnic minority groups—revealed that these WHIV contend with multiple stigmatized attributes that may intensify the effect of HIV-related stigma on their ART adherence and engagement in care.^{31,33,45–47,89,90,93} For instance, some WHIV have asserted that, in addition to HIV-related stigma, there is stigma attached to being poor relating it to the perceptions of substandard care at some HIV treatment facilities in their communities, lack of respect from the health care providers, and violation of their privacy that prevented adequate health care utilization.³¹ Moreover, an individual's race/ethnicity may contribute to the cumulative experience of HIV-related stigma.

A study that assessed the impact of internalized stigma on ART adherence found that internalized stigma was a significant predictor of suboptimal adherence among the Hispanic and non-Hispanic Black populations (AOR = 0.69, 95% CI: 0.52–0.91) but not for non-Hispanic White.⁹⁵

Role of HIV disclosure in retention in care and ART adherence

In a longitudinal study conducted in the United States, lack of disclosure of HIV-positive status to family members at baseline was associated with poorer medical appointment attendance at the 18-month follow-up (OR = 6.62, 95% CI: 1.11–39.38, p = 0.04), and not associated with reported missed pills at the 18-month follow-up (OR = 0.35, CI: 0.02–6.75, p = 0.49).⁸⁴ Another study showed no significant direct or indirect association between HIV disclosure and ART adherence or engagement in care using a structural equation model (SEM).⁸⁵ The only Canadian study that examined the effect of HIV disclosure concerns on ART adherence also found that HIV disclosure was not associated with ART adherence in both the unadjusted (OR = 1.01, 95% CI: 0.98–1.05) and adjusted analyses (AOR = 1.03, 95% CI: 0.99–1.07).⁷⁶

Further, WHIV shared their experiences and perspectives on how disclosure or nondisclosure of HIV serostatus can facilitate or inhibit their HIV health-related behaviors in the qualitative studies. Most of the WHIV felt that HIV disclosure is intertwined with stigma, impacting their ability to maintain optimal ART adherence and remain in care. These women voiced their hesitancy to visit health care facilities especially those designated for HIV treatment as a result of the heightened risk of unintentional disclosure of their serostatus to others while seeking HIV care at the facilities.^31,47,49,96 WHIV feared being subjected to negative judgment, prejudice, social isolation, and ostracism from their communities.^{31,33,46,47,54,91} Some participants stated that the concerns about confidentiality and the experienced violations of privacy in the health care facility resulted in the discontinuation of HIV care.^33,46,48,96

In another study, a few women mentioned they had missed taking their ART medications or took them secretly (e.g., in the bathroom) when with friends or family members to prevent inadvertent disclosure of HIV status.⁹⁰ These behaviors stemmed from fear of being rejected by their loved ones as experienced by a few WHIV whose friends/family required them using disposable plates and cutlery or clean the bathroom after use or whose family and friends severed their relationship with them after they became aware of their HIV-positive status.^45,91 On the contrary, some WHIV had positive experiences after HIV-positive disclosure, noting that revealing their seropositive status to others resulted in gaining social support, emotional encouragement, and stronger interpersonal bonds with family members and friends that facilitated the ability of being engaged in care and adherent to treatment.^46,47,90

Potential mechanisms

Several studies, including five conducted in the United States^{48,52,87,92,95} and one in Canada,⁷⁶ identified factors acting as mediating or moderating factors in the relationship between HIV-related stigma, HIV disclosure and HIV-health behavioral outcomes (e.g., ART adherence, retention in care). A longitudinal study found that depression was a significant mediator in the indirect effect of internalized HIV stigma on suboptimal ART adherence [β = −0.05, standard error (SE) = 0.03, 95% CI: −0.11 to −0.006].⁵² A similar result was seen in the study conducted in Canada, which showed that depression fully mediated the pathways from personalized stigma to ART adherence (β = −0.014, p < 0.05), and negative self-image to current ART use (β = 0.036, p < 0.01) and ART adherence (β = −0.045, p < 0.001).⁷⁶

In a serial mediation analysis with a subgroup of racial/ethnic minority WHIV, internalized stigma was found to predict lower perceived social support or increased loneliness, which in turn led to more depressive symptoms and subsequently resulted in suboptimal medication adherence.⁹⁵ In addition, one of the mixed-methods studies demonstrated that higher depressive symptoms (β = −0.05, 95% CI: −0.13 to −0.01), higher coping by substance use (β = −0.04, 95% CI: −0.10 to −0.001), and lower adherence self-efficacy (β = −0.08, 95% CI: −0.17 to −0.03) mediated the association between anticipated HIV-related stigma and lower ART adherence.⁴⁸

Findings from a moderated mediation model revealed that the magnitude of the indirect effect of perceived community stigma on ART adherence through internalized stigma was significantly moderated by three personality traits—fear of negative social evaluation (index = −0.08, SE = 0.05, 95% CI: −0.20 to −0.0004), attachment-related anxiety (index = −0.03, SE = 0.02, 95% CI: −0.09 to −0.002), and dispositional resilience (index = 0.07, SE = 0.05, 95% CI: 0.00–0.19).⁸⁷ WHIV who reported higher fear of negative social evaluation and attachment-related anxiety, and lower dispositional resilience, were at a higher risk of increased internalization of perceived HIV stigma in their communities that may result in nonadherence to ART.⁸⁷

In another study, internalized stigma not only decreased the odds of ART adherence (AOR = 0.63, 95% CI: 0.40–0.98), but also moderated the protective effect of resilience on ART adherence (β = −0.58, AOR = 0.56, 95% CI: 0.33–0.93, p = 0.03).⁹² The study showed that the effect of resilience diminishes more among WHIV with high levels of internalized stigma (β = −0.36, AOR = 0.70, 95% CI: 0.41–1.19, p = 0.19) than with low levels of internalized stigma (β = 0.47, AOR = 1.60, 95% CI: 0.93–2.74, p = 0.09).⁹²

Discussion

This systematic review highlighted the effect of HIV-related stigma and HIV disclosure on ART adherence and retention in care among WHIV in the United States and Canada. The literature in our review suggests that HIV-related stigma and concerns about disclosure of seropositive status remain major contributing factors to HIV health outcomes among WHIV in HICs, despite public awareness of HIV and perceived social acceptability of PWH. Although a previous systematic review had evaluated HIV stigma exclusively among WHIV, the review was limited to WHIV residing in the southern region of the United States.⁶⁷ As far as we are aware, our study is the first to conduct a comprehensive review of the literature on HIV-related stigma and disclosure relationship with HIV-related health behaviors among WHIV in both the United States and Canada, without regional restrictions.

Both reviews revealed similar findings, highlighting the pervasive nature of HIV-related stigma within communities and health care settings, as well as the mental health implications associated with the experience of this stigma. The results of these reviews also emphasize the various layers of social stigma that compound the experiences of WHIV. However, the current systematic review provides a broad and more in-depth understanding of the distinct impact of the different dimensions of HIV-related stigma, the bidirectional relationship between disclosure and HIV stigma, and the complex mechanism through which stigma impacts women's overall well-being.

Most of the studies in our review found a link between HIV-related stigma and nonadherence to ART and disengagement from HIV care, but the findings were mixed when looking at the different dimensions of HIV-related stigma. Among the HIV stigma dimensions, internalized stigma was usually found to be correlated with ART nonadherence and disengagement from care when assessed together with other HIV-stigma dimensions or alone, although some studies found no significant association between the different dimensions of HIV-related stigma and HIV-related health behaviors. Of particular interest is the transformation of one form of stigma to another. This was demonstrated in three studies, which showed that interpersonal experiences of stigma, such as perceived community stigma and enacted stigma, become internalized by the WHIV^45,87,91 that may manifest as self-hatred, low self-worth, decreased self-efficacy, and psychological distress.^40–42 This internalization of stigma can exacerbate the adverse effect of stigma on ART adherence,⁸⁷ leading to increased viral load and greater risk of transmission. This is consistent with Earnshaw et al.'s HIV stigma framework, which suggests that the various dimensions of HIV-related stigma are interconnected, and that internalized stigma has a strong relationship with affective and behavioral indicators of health outcomes among PWH.⁴²

One notable similarity observed in some studies conducted in the United States and Canada was that the significant effects of HIV-related stigma on ART adherence and retention in care found in the bivariate analyses were not retained after adjusting for covariates in the multi-variate analyses; however, some SEM analyses indicated that the effects were partially or fully mediated by depression (both in a cross-sectional and longitudinal study designs).^48,52,76 Other mediators identified in two US studies were lower self-efficacy, coping with substance use, less social support, and loneliness.^48,95 These findings laid more emphasis on the impact of HIV-related stigma on the mental health of WHIV, which in turn leads to ART nonadherence and decreased retention in care. This aligns with the HIV-related stigma framework proposed by Turan et al., which posits that mental health factors such as depression symptoms, anxiety, substance use, and psychological distress are significant mechanisms that explain the adverse impact of HIV-related stigma on HIV health behaviors and outcomes.⁴¹ Thus, this pathway remains a vital point of focus for intervention in ameliorating the consequences of HIV-related stigma in the overall well-being of WHIV in both countries.

In addition, two other studies conducted in the United States identified potential intrapersonal factors that moderate the effect of internalized stigma among WHIV.^87,92 The negative effect of internalized stigma was heightened by greater fear of societal devaluation and abandonment from friends/family members/partners (attachment-related anxiety),⁸⁷ while resilience buffers the effect.^87,92 Thus, supporting the need for more effective and women-focused adaptive coping strategies, including resilience building and psychological counseling, to assist WHIV in managing their health and maintaining continuous HIV care.⁹²

Regarding disclosure of seropositive status, WHIV need to disclose their HIV status to receive support and assistance from close friends and family members. Although there are existing HIV-specific criminal laws in Canada¹¹² and some states in the United States¹¹³ that require mandatory disclosure of status of PWH to the person with whom they are engaged in sexual activities, it is ultimately the choice of PWH whether or not to disclose their status to others such as family members or persons in their social circles. The reviewed studies indicate that although many WHIV recognize the value of social support from their immediate social circles, including religious communities, in alleviating the impact of stigma and motivating engagement in care, disclosing their status remains challenging due to the fear or anticipation of rejection and the perceived community stigma.^{31,45–47,93}

In addition, those who had previously experienced stigmatizing attitudes following disclosure may tend to avoid further disclosures to others,⁴⁵ limiting potential sources of social support. However, some women felt burdened with the need to keep their HIV status a secret from their loved ones.⁴⁵ This highlights the complex and bidirectional relationship between stigma and HIV disclosure in impacting HIV-related health outcomes as illustrated in Chaudoir et al.'s disclosure process model.⁵³ As mentioned in our result, the perception of stigma in the communities, especially within the minority communities, was cited as a major barrier to positive HIV-health behaviors. Hence, WHIV avoid attending HIV care named clinics or HIV care clinics isolated from other health care clinics to prevent unintended disclosure.^{31,33,46,47,89} Therefore, as suggested in the systematic review conducted by Mizuno et al.,¹¹⁴ the availability of health care settings that provide both HIV care and non-HIV specific health care services may improve ART intake and retention in care because of a reduced likelihood of involuntary disclosure of HIV status to others in the communities while seeking or accessing HIV care in such health care facilities.

Further, while the majority of women who participated in the qualitative studies expressed satisfaction with their health care provider relationships, there were also reports of anticipated and experienced stigma, and violation of privacy in the health care setting despite the existence of laws [such as the Health Insurance Portability and Accountability Act (HIPAA) in the United States, and the Personal Health Information Protection Act (PHIPA) in Canada] and ethical obligation to safeguard the confidentiality of patients' health information. The participants found HIV stigma in the health care setting more discouraging and disappointing compared with other settings, due to their expectations of utmost professionalism from health care workers who are well-informed about HIV/AIDS.^{33,45,47,48,93} The actual and anticipated stigma in health care setting was found to be associated with suboptimal ART adherence, not seeking HIV care, or delayed linkage to care.^48,75

However, some of the WHIV also reported having a supportive relationship with their health care providers that helped improve their ART adherence and medical care engagement.^46,47 In addition, the women in one of the studies described a shift from being disengaged from HIV care and nonadherent to ART to developing a stronger dedication toward staying engaged in care and adherent to their treatment regimen due to increased self-acceptance and development of better mechanisms to cope with HIV-related stigma as they age, and mainly having a positive relationship with their HIV physicians.⁴⁵ This is consistent with previous studies, which showed that patients are more likely to adhere to treatment and attend more HIV care appointments if the provider knows them as a person, actively listens to them, shows concern for their health needs, and treats them with respect.^115,116

Taken together, although it may be considerably challenging to alter people's attitudes and perceptions toward WHIV, our review suggests the need to optimize culturally relevant awareness programs to extensively desensitize public negative perceptions, increase the public knowledge about HIV, and prioritize the integration of interventions at both the individual and health care provider levels. These interventions may include strategies that enhance resilience, increase linkage to mental health services, and trainings among the health care workers to foster cultural sensitivity, competency, and effective patient–provider relationships, focusing on key populations with other overlapping vulnerable social group identities such as the racial/ethnic minority groups (African American and Hispanic WHIV in the United States, Indigenous/Black/Caribbean/Latina WHIV in Canada), low socioeconomic status, and younger adults.

In addition to the colocation of HIV/AIDS-specific and nonspecific HIV medical care as proposed in Mizuno et al.'s review,¹¹⁴ individual-level interventions should encompass strategies to assist WHIV in disclosing their HIV status safely to persons who are perceived as potential sources of emotional and practical support. Moreover, health care providers should offer assistance to WHIV who express a desire to disclose their status but feel anxious,¹¹⁷ guiding them through the disclosure process. This could also present an opportunity for providers to address any misconceptions about HIV held by the patient's close friends or family members, as information from an HIV health care expert may be more readily accepted by them. By adopting these approaches, the aim is to achieve significant and sustainable improvements in ART adherence and retention in care.

Further, our review found only three studies conducted in Canada^75–77 that specifically evaluated the influence of HIV-related stigma and HIV disclosure on the health care engagement and ART adherence among Canadian WHIV. Similarly, only three longitudinal studies were identified in our review, and all were conducted in the United States.^52,82,84 Consequently, there is a critical need for further research that investigates the impact of HIV disclosure and simultaneously evaluates the different forms of HIV-related stigma impact on HIV health outcomes among WHIV, with a particular emphasis on longitudinal studies. In addition, these studies should explore other mechanisms, identified in Turan et al.'s and Earnshaw et al.'s conceptual HIV-related stigma frameworks and Chaudoir et al.'s disclosure process model, through which HIV stigma and disclosure can subsequently influence the health behaviors of WHIV.

Such studies would provide a more nuanced understanding of the negative effects of HIV stigma and disclosure or nondisclosure of HIV, which could inform the development of effective women-centered interventions aimed at improving HIV health behaviors and health outcomes.

Despite some of the discrepancies in the results that may be attributable to the difference in sample size, variations in instruments/measurements, and study designs, our review suggests that addressing HIV-related stigma, especially in the health care settings, promoting HIV disclosure among those who desire to disclose to relatives/friends to obtain social support and caretaking, and intensifying the implementation of culturally appropriate campaigns in minority communities could help mitigate the barriers of stigma and HIV status disclosure on ART adherence and retention in care, as well as reduce health disparities.

Limitation

This review has several limitations. First, most studies included in this review used cross-sectional designs, limiting our ability to draw causal inferences. Second, the studies used different measures of HIV stigma, HIV disclosure, and ART adherence and retention in care, and thus, due to the heterogeneity in methods and outcome measures, we were unable to compare the strength of associations and findings across studies. Third, due to the dearth of studies conducted in Canada in our review, this systematic review does not offer a comprehensive comparative insight into the distinct impact of HIV stigma and disclosure among WHIV in both countries. Lastly, our review was focused on studies conducted in two HICs, therefore limiting the generalizability of the findings to other HICs and LMICs.

Authors' Contributions

E.S.N., with the support of M.J.T., conceptualized the study and developed the protocol. E.S.N. conducted the database literature search. E.S.N. and A.G., in consultation with M.J.T. screened the abstracts and full articles, extracted the data from selected studies, and assessed the studies for risk of bias. E.S.N. drafted the initial article. A.G., D.M.S., G.E.I., and M.J.T. made substantial contributions to its content and editing. All authors critically reviewed and approved the final article.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This work is supported by award number R01MD013563 from the National Institute on Minority Health and Health Disparities (NIMHD) at the National Institutes of Health.

Supplementary Material

Supplementary Table S1

Supplementary Table S2

Supplementary Figure S1