Prevalence and Correlates of HIV Disclosure Without Consent Among Women Living With HIV in Metro Vancouver,Canada

Abstract

This study identified the prevalence and perpetrators of HIV disclosure without consent, and social-structural correlates, among women living with HIV (WLWH). Data were drawn from 7 years (September 14 to August 21) of a longitudinal community-based open cohort of cis and trans WLWH living and/or accessing care in Metro Vancouver, Canada. The study sample included 1871 observations among 299 participants. Overall, 160 (53.3%) women reported lifetime HIV disclosure without consent at baseline, and 115 (38.5%) reported HIV disclosure without consent in the previous 6 months during 7 years of follow-up. In a subanalysis (n = 98), the most common perpetrators of HIV disclosure without consent were friends, people in the community, family, health professionals, and neighbors. In multivariable logistic regression analysis with generalized estimating equations, recent (last 6 months) housing insecurity [adjusted odds ratio (AOR): 1.43, 95% confidence interval: (1.10–1.86)], minoritized sexual identities (LGBQ2S) [AOR: 1.84 (1.22–2.78)], recently being treated, monitored, or diagnosed with depression, anxiety, or post-traumatic stress disorder [AOR: 1.37 (0.98–1.92)], and experiencing physical symptoms related to HIV [AOR: 1.75 (1.25–2.44)] was positively associated with recent disclosure without consent. In a context where HIV nondisclosure before sex is criminalized unless viral load is low and a condom is used, it is concerning that a large proportion of women have experienced HIV disclosure without consent. Laws should focus on protecting rights of WLWH, promoting equity, guaranteeing sexual and reproductive rights, and ensuring access to essential services and privacy. Findings highlight the need for trauma-informed approaches among health and housing services that are responsive to intersections of violence and stigma, and include a focus on confidentiality, autonomy, and safe disclosure practices.

Introduction

For people living with HIV, deciding when, how, and to whom they disclose their HIV status is an ongoing and evolving process.¹ For women living with HIV (WLWH), decisions to disclose may depend on the type of relationship (partners, family, friends, vs. health care providers), relationship qualities (feeling accepted/rejected or unequal power differentials), and perceived ability/intention to maintain confidentiality.² HIV disclosure with consent involves the disclosure of HIV status information with express consent from the person living with HIV.

In some cases, health care professionals may disclose HIV without consent to other health care professionals directly involved in someone's circle of care; however, clients have the right to know of this possibility and to deny sharing of information.³ Disclosure with consent may also occur if someone living with HIV asks for a referral to HIV-supportive housing and has been informed and/or understands that HIV status information will be disclosed to the housing coordinator. HIV disclosure without consent is a form of enacted HIV stigma that can be extremely traumatizing for women and is characterized by the disclosure of HIV status information without someone's explicit knowledge and permission. HIV disclosure without consent in health and social services may occur if HIV status information is being disclosed to determine eligibility for HIV-supportive housing without asking a person in advance or to other health care providers based on irrational fear and discrimination.^3,4

Disclosure without consent can also occur in pharmacy settings, where medication information may be discussed within earshot of other patrons.⁵ People living with HIV may be made aware of disclosure without consent if they witness the disclosure directly, if someone they did not disclose to speaks to them about their status, or if they notice chart labels or other administrative information that includes information about their HIV status that they did not disclose or consent to sharing broadly. It is important to note that many disclosures without consent can occur without women's knowledge, for example, among care providers and staff.

Research has suggested HIV disclosure without consent is associated with increased risk of stigma, discrimination, and violence.⁶ Currently, there is little recourse for when HIV disclosure without consent occurs. There is a dearth of research that explores harms and prevalence of HIV disclosure without consent or who may be most likely to experience these, with research often focusing on positive impacts of disclosure.¹

Criminalization of HIV nondisclosure constitutes a serious threat to public health and human rights of people living with HIV.⁷ The Canadian approach to the criminalization of HIV nondisclosure is recognized as among the most punitive, wherein nondisclosure of HIV to a sexual partner may be criminalized unless viral load (VL) is low and condoms are used during a sexual encounter, regardless of intent or actual transmission.⁸ This approach to criminalization has only been applied to sexual encounters thus far. Over 220 people have faced charges related to HIV nondisclosure in Canada, typically under aggravated sexual assault where convictions mandate sex offender designation and maximum sentences of life imprisonment.⁸

Prosecution of HIV nondisclosure fuels stigma and fear,⁹ operating contrary to scientific understandings of HIV transmission,⁷ and undermines confidentiality and safe disclosure for people living with HIV. Recommendations to amend prosecutorial practices were made in 2019 by the Standing Committee on Justice and Human Rights to the House of Commons; however, there has been no legislative change (2019).¹⁰ Canada's Department of Justice launched consultations with key stakeholders, including people living with HIV, in October 2022, as a step toward modernizing current Canadian law.¹¹

Research with WLWH in Canada highlights that criminalizing HIV nondisclosure constitutes structural stigma, lacks an appreciation of disclosure barriers, and exacerbates violence, including weaponizing of HIV status; criminalization of HIV nondisclosure is a barrier to reporting violence in contexts of assault where disclosure may not have been possible or exacerbated violence.¹² Qualitative research from Vancouver, Canada, found that support for the criminalization of HIV nondisclosure is based on stigmatizing assumptions that people living with HIV may intentionally expose others; participants lacked an understanding of the U = U (undetectable = untransmissible) concept that an undetectable VL means that HIV is untransmissible, even without a condom.⁹ Further, criminalization practices operate without acknowledging that safe disclosure and condom negotiation are shaped by gendered physical, social, and economic power differentials that typically favor men, which can have implications for women's safety.¹²

In research from Canada, a quarter of women were unaware that HIV nondisclosure could be criminalized, and among those aware, half reported not understanding legal obligations to disclose; over a third of women had never discussed HIV disclosure and the law with a health care provider.¹³ Research from Canada among people living with and without HIV illustrates widespread misconceptions regarding HIV transmission and stigmatization in the context of HIV criminalization, highlighting the importance of amending legislation that perpetuates harmful misinformation.⁹ Evidence indicates that criminalization of HIV nondisclosure is ineffective in HIV prevention as it discourages testing, undermines care engagement, and disrupts patient-provider relationships.⁷

The Health Stigma and Discrimination Framework (HSDF), developed by Stangl et al.,¹⁴ provides a useful framework to investigate complex intersections of power that impact women's experiences of HIV disclosure without consent. The HSDF conceptualizes drivers and facilitators of health-related stigma as factors that determine stigma “marking” or the application of stigma. For people living with HIV, health-related stigma drivers and facilitators could include fear of infection, social judgment, and blame. Stigma marking in turn leads to experiences of stigma, such as HIV disclosure without consent. In our context, it is pertinent that HSDF also considers the impact of intersecting stigma manifestations on access to justice, health, and social inclusion.¹⁴

Given the severe consequences of HIV disclosure without consent on safety and HIV care outcomes, it is important to understand the scope of women's experiences of HIV disclosure without consent to enable service providers to be mindful of and acknowledge this possibility to create an environment in which conversations around confidentiality can be supportive and productive and to avoid re-traumatizing women by disclosing HIV information without consent.

Characterizing experiences of HIV disclosure without consent provides evidence to inform current recommendations to abolish discriminatory laws and practices that punitively regulate HIV nondisclosure in Canada.^8,11 Further, we can identify how health care and other systems can better protect safety, support autonomy, foster trust, and protect human rights of people living with HIV.^8,11,15,16 Therefore, the objectives of this study were to (1) identify prevalence and preparators of HIV disclosure without consent and (2) examine correlates of disclosure without consent among WLWH in an urban Canadian setting. We hypothesize that HIV disclosure without consent occurs at intersections of other stigmatization characterized by social and structural marginalization.^14,17

Methods

Study design and sampling

Data for this analysis were drawn from a longitudinal community-based open cohort of WLWH in Metro Vancouver, the Sexual Health and HIV/AIDS: Women's Longitudinal Needs Assessment (SHAWNA) project. In line with commitments to GIPA/MIPA (Greater/Meaningful Involvement of People living with HIV and/or AIDS), SHAWNA receives guidance and support from a Community Stakeholder Advisory Board. SHAWNA was launched in 2014 after consultations with WLWH, HIV care providers, and policy experts to determine research gaps and community priorities, and assess social, policy, legal, gender, and geographical gaps in sexual health and HIV care among WLWH in Metro Vancouver. Inclusion criteria for participants include identifying as a woman (cis or trans), being 14 years of age or older, having an HIV diagnosis, and living or accessing HIV/AIDS services in Metro Vancouver.

Participants are recruited using community-based methods, including through outreach team members, community partners, HIV care providers, peer navigators, HIV/AIDS organizations, and clinical outreach teams. SHAWNA is an open cohort with ongoing recruitment. There is close collaboration with the primary referral center for WLWH in British Columbia (BC) (Oak Tree Clinic, BC Women's Hospital). Participants may interview at a community research office or in a safe, discreet location of their choice.

At enrollment and every 6 months after, women complete an interviewer-administered questionnaire with an experienced community interviewer, which elicits information, including sociodemographic and social and structural factors, as well as barriers and facilitators to health care access, including HIV treatment and care. Participants have the option of confidential HIV monitoring (VL/CD4 count) and STI/HCV testing with a sexual health research nurse. From September 2021 onward, participants received $65CAD remuneration at each biannual visit for their time, expertise, and travel (previously $50). The study holds ethical approval through Providence Health Care/University of British Columbia Research Ethics Board and BC Women's Hospital.

Outcome variable measuring HIV disclosure without consent

Reporting HIV disclosure without consent in the last 6 months was the primary outcome for this study, defined as answering “yes” to “In the last 6 months, has anyone ‘outed’ you for knowing or suspecting you were HIV positive?”, time updated at each study visit. As of March 2016, participants were also asked about their relationship to perpetrators of HIV disclosure without consent by answering the subsequent question: “If yes, who were you outed by?”; data are reported descriptively among a subsample of participants who responded to this question.

Explanatory variables

Explanatory variables were selected based on previous research and a priori knowledge using the HSDF that situates experiences of HIV disclosure without consent within intersecting systems of power and stigma.^6,14,18 While experiences of stigma or discrimination driven by racism, classism, gender and transphobia, homophobia, mental health-related stigma, and substance use were not measured explicitly, variables such as race, housing and food security, gender, and sexuality were included as proxies to capture drivers and facilitators of stigma marking, which contribute to enacted stigma using an intersectional approach.^14,19

Time-fixed demographic and social-structural variables included the following: race, including self-identified Indigenous woman (inclusive of First Nations, Métis, and Inuit), Black and other racialized women (African, Caribbean, Black, Latin American, Asian, or other), versus only reporting White. The term Indigenous is used throughout, while recognizing great diversity across and within languages, cultures, nations, and lands.

While descriptive data were disaggregated, given the small sample size of Black participants, comparable to the BC population, Black women and otherwise racialized women were combined in modeling to understand experiences of racism for non-Indigenous racialized persons. We included measures for sexual identity [sexuality that has been historically minoritized or marginalized at any study visit (inclusive of lesbian, gay, bisexual, asexual, Two-Spirit, queer, and other) vs. heterosexual at all study visits] and gender identity {gender that has been historically minoritized or marginalized at any study visit [inclusive of trans (transgender, transsexual, other transfeminine identity), nonbinary (nonbinary or genderqueer), and/or Two-Spirit] vs. cisgender at all visits}.

Indigenous women were asked if they identified as Two-Spirit, an identity among people Indigenous to Turtle Island who identify as having both a masculine and feminine spirit, which may describe any or all sexual, gender, and/or spiritual identity; however, usage is individual and context dependent.²⁰ Participants were given the option to provide multiple responses to questions on sexual and gender identity. Based on evidence that minority stress processes affect those whose gender has been historically minoritized relative to cisgender populations,²¹ and those whose sexuality has been historically minoritized relative to heterosexual populations,²² for the purposes of analyses, we combined participants with sexual identities that have been historically minoritized into one group and participants with historically minoritized gender identities into one group. We also considered immigration/migration to Canada.

All other potential explanatory variables were time-updated to capture current measures/events in the last 6 months at each study visit, including being housing insecure at any point, using the Canadian Definition of Homelessness described elsewhere;^23,24 living in HIV-specific supportive housing; diagnosis, treatment/monitoring, or counseling/support for depression, anxiety, or post-traumatic stress disorder (PTSD); seeking care from a health care provider for health concerns; being admitted/staying overnight in hospital; drugs/medication taken for any major or persistent pain (any illicit drug use vs. prescribed or over-the-counter medication only vs. no medication use vs. no major or persistent pain); being incarcerated overnight or longer; exchanging sex for money/goods/services; frequency of noninjection drug use, excluding alcohol and cannabis (daily vs. less than daily vs. none); frequency of injection drug use (daily vs. less than daily vs. none); and having any contact with HIV-specific outreach services in Metro Vancouver.

Other measures included age (younger than 30 vs. 30 or older); feeling that HIV has negative physical effects (e.g., fatigue, nausea, night sweats, weight loss); having a physical disability that limits mobility; being on antiretroviral therapy (ART); having ART prescribed by mobile outreach (yes vs. no vs. not on ART); having ART dropped off at home (yes vs. no vs. not on ART); and main HIV care provider (Oak Tree Clinic vs. community clinic vs. other clinic).

Statistical analyses

The sample was restricted to observations where participants provided a valid answer to the primary outcome. Baseline descriptive statistics were calculated and stratified by the outcome. Differences were assessed using Pearson's chi-square test (Fisher's exact test for small cell counts). Next, using longitudinal data, a two-part modeling approach was employed using logistic regression with generalized estimating equations (GEE) and an exchangeable correlation matrix. The GEE method accounts for nonindependence of repeated measures from the same individuals over the study period. Bivariate logistic regression with GEE examined associations between each explanatory variable and the primary outcome: HIV status disclosure without consent in the last 6 months.

Second, a priori hypothesized variables and those associated with the outcome at p < 0.10 in bivariate analysis were considered for inclusion in a multivariable explanatory model. Beginning with the full model, we used a manual backward elimination process to identify the best fitting model, as indicated by the lowest quasi-likelihood under the independence model criterion (QIC). All p-values are two-sided, odds ratios (ORs) and adjusted odds ratios (AORs) with 95% confidence intervals (CI) are reported. SAS version 9.4 was used for statistical analyses (SAS Institute, Inc., Cary, North Carolina, USA).

Results

This study included 299 WLWH participants with 1871 observations over 7 years of observation (September 14 to August 21). Lifetime prevalence of disclosure of HIV without consent at baseline was high at 160 (53.3%), 53 women (17.7%) reported recent (last 6 months) disclosure without consent at baseline, and 115 (38.5%) reported recent disclosure of HIV without consent (main outcome) in at least one study visit. By the end of the study period, 186 (62.2%) had ever experienced HIV disclosure without consent. Table 1 summarizes baseline characteristics stratified by recent disclosure of HIV without consent. The majority of participants were 30 years of age or older (n = 289, 96.7%). A total of 138 (46.2%) reported a minoritized sexual identity, and 35 (11.7%) reported a minoritized gender identity. Overall, 7.7% (n = 23) reported a trans identity and 3.0% (n = 9) reported a nonbinary identity. Among Indigenous participants, 23 (13.9%) reported a Two-Spirit identity.

Table 1.

Baseline Characteristics of 299 Women Living with HIV Stratified by Recent (Last 6 Months) HIV Disclosure Without Consent

Variable		Experienced HIV disclosure without consent ^a
Variable	Total (%) N = 299	Yes, n = 53 (17.7%)	No, n = 246 (82.3%)	p	Missing (n)
Age
Age <30	10 (3.3%)	NA	NA	0.218	0
Age ≥30	289 (96.7%)	53 (100.0%)	236 (95.9%)
Sexual minority^b	138 (46.2%)	30 (56.6%)	108 (43.9%)	0.093	0
Gender minority^c	35 (11.7%)	8 (15.1%)	27 (11.0%)	0.398	0
Race
White	104 (34.8%)	NA	NA	0.051	0
Indigenous^d	166 (55.5%)	NA	NA
Black	15 (5.0%)	NA	NA
Other racialized identity	14 (4.7%)	NA	NA
Im/migrated to Canada	31 (10.4%)	8 (15.1%)	23 (9.4%)	0.213	0
Housing insecure at any point^a	173 (57.9%)	34 (64.2%)	139 (56.5%)	0.307	0
Lived in HIV-specific supportive housing^a	19 (6.4%)	NA	NA	0.544	0
Feel that HIV is having negative physical effects	162 (54.2%)	42 (79.3%)	120 (48.8%)	<0.001	3
Mental health condition^e	91 (30.4%)	22 (41.5%)	69 (28.1%)	0.053	0
Sought care for health concerns^a	237 (79.3%)	44 (83.0%)	193 (78.5%)	0.457	0
Admitted to hospital/stayed overnight^a	68 (22.7%)	13 (24.5%)	55 (22.4%)	0.732	0
Physical disability^f	122 (40.8%)	28 (52.8%)	94 (38.2%)	0.037	1
Drugs/medication taken for any major or persistent pain^a
Any illicit drug	60 (20.1%)	16 (30.2%)	44 (17.9%)	0.071	1
Prescribed/OTC only	73 (24.4%)	14 (26.4%)	59 (24.0%)
No medication	25 (8.4%)	6 (11.3%)	19 (7.7%)
No pain	140 (46.8%)	17 (32.1%)	123 (50.0%)
In jail overnight or longer^a	13 (4.4%)	NA	NA	0.476	4
Contact with HIV-specific outreach services^a	107 (35.8%)	30 (56.6%)	77 (31.3%)	<0.001	13
Currently on ART	262 (87.6%)	44 (83.0%)	218 (88.6%)	0.227	1
ART is prescribed by mobile outreach
Yes	9 (3.0%)	NA	NA	0.411	2
No	252 (84.3%)	NA	NA
Not on ART	36 (12.0%)	NA	NA
ART is dropped off at home
Yes	47 (15.7%)	6 (11.3%)	41 (16.7%)	0.345	3
No	213 (71.2%)	37 (69.8%)	176 (71.5%)
Not on ART	36 (12.0%)	9 (17.0%)	27 (11.0%)
Main HIV care provider
Oak Tree Clinic^g	106 (35.5%)	22 (41.5%)	84 (34.2%)	0.474	13
Community Clinic	117 (39.1%)	17 (32.1%)	100 (40.7%)
Other Clinic	63 (21.1%)	11 (20.8%)	52 (21.1%)
Frequency of NIDU^a
Daily	43 (14.4%)	10 (18.9%)	33 (13.4%)	0.612	3
Less than daily	76 (25.4%)	13 (24.5%)	63 (25.6%)
None	177 (59.2%)	30 (56.6%)	147 (59.8%)
Frequency of IDU^a
Daily	52 (17.4%)	11 (20.8%)	41 (16.7%)	0.771	2
Less than daily	78 (26.1%)	14 (26.4%)	64 (26.0%)
None	167 (55.9%)	28 (52.8%)	139 (56.5%)
Exchanged sex for money, goods, or services^a	76 (25.4%)	17 (32.1%)	59 (24.0%)	0.220	0

Last 6 months.

Inclusive of gay, lesbian, bisexual, two spirit, asexual, queer, or other.

Inclusive of transgender, transsexual, intersex, two spirit, genderqueer, or other.

Inclusive of First Nations, Métis, and Inuit peoples of Canada.

Diagnosis, treatment/monitoring, or counseling/support for anxiety, depression, or post-traumatic stress disorder in the last 6 months.

That limits mobility.

Primary referral center for women living with HIV in British Columbia.

ART, antiretroviral therapy; IDU, injection drug use; NA, denoted for cells with counts <5 to ensure confidentiality; NIDU, noninjection drug use; OTC, over the counter.

Indigenous participants were overrepresented in this sample, similar to other studies with overrepresentation of Indigenous people living with HIV in Canada, at 55.5% (n = 166) relative to the BC population (5.9% in 2016).²⁵ The sample also included 34.8% (n = 104) White participants, 5.0% (n = 15) Black participants, and 4.7% (n = 14) other racialized participants. Figure 1 summarizes data for participants who shared perpetrators of HIV disclosure without consent; this included friends, people in the community, housing residents/neighbors, family, health professionals, housing and outreach staff, police, intimate partners, coworkers, acquaintances, and organizations.

FIG. 1.

Subanalysis of n = 98 participants who reported perpetrators of involuntary disclosure of HIV status.

Bivariate and multivariable logistic regression analyses using GEE are summarized in Table 2. In bivariate analysis, the following were associated with increased odds of HIV disclosure without consent: minoritized sexual identities, minoritized gender identities; and recent: housing insecurity, feeling that HIV has negative physical effects, and incarceration overnight or longer. In multivariable GEE analysis, factors associated with increased odds of experiencing HIV disclosure without consent included minoritized sexual identities (AOR: 1.84, 95% CI: 1.22–2.78); recent: housing insecurity (AOR: 1.43, 95% CI: 1.10–1.86), feeling that HIV has negative physical effects (AOR: 1.75, 95% CI: 1.25–2.44), and diagnosis; treatment/monitoring; or counseling/support for a mental health condition (anxiety/depression/PTSD) (AOR: 1.37, 95% CI: 0.98–1.92).

Table 2.

Bivariate (Unadjusted) and Multivariable (Adjusted) Odds Ratios and 95% Confidence Intervals and p-Values for the Correlates of Experiencing Recent HIV Disclosure Without Consent in the Last 6 Months Among Women Living with HIV in Metro Vancouver, Canada, 2014–2021

	Experienced HIV disclosure without consent ^a
Variable	Unadjusted		Adjusted
Variable	OR (95% CIs)	p	OR (95% CIs)	p
Age <30	1.07 [0.39–2.89]	0.902
Sexual minority^b	1.87 [1.22–2.85]	0.004	1.84 [1.22–2.78]	0.004
Gender minority^c	1.74 [0.97–3.11]	0.061	^*
Race			^*
Indigenous^d versus White	0.74 [0.47–1.16]	0.191
Black/Other racialized identity versus White	1.07 [0.56–2.06]	0.836
Im/migrated to Canada	1.42 [0.79–2.56]	0.239
Housing insecure^a	1.40 [1.10–1.77]	0.006	1.43 [1.10–1.86]	0.008
Feel that HIV has negative physical effects	1.77 [1.31–2.39]	<0.001	1.75 [1.25–2.44]	0.001
Lived in HIV-specific supportive housing^a	0.68 [0.39–1.21]	0.189	^*
Mental health condition^e	1.30 [0.95–1.78]	0.104	1.37 [0.98–1.92]	0.064
Sought care for any health concerns^a	1.20 [0.91–1.58]	0.190
Admitted to hospital/stayed overnight^a	1.01 [0.75–1.37]	0.943
Physical disability^f	1.26 [0.91–1.73]	0.164	^*
Drugs/medication taken for any major or persistent pain^a
Any illicit drugs versus no pain	1.29 [0.90–1.85]	0.172
Prescribed/OTC only versus no pain	1.13 [0.79–1.64]	0.503
No medication versus no pain	0.94 [0.52–1.69]	0.829
In jail overnight or longer^a	2.04 [1.02–4.07]	0.045	^*
Had contact with HIV-specific outreach services^a	1.21 [0.93–1.57]	0.150	^*
Currently on ART	0.82 [0.52–1.29]	0.392
ART is prescribed by mobile outreach
Yes versus no	0.73 [0.32–1.67]	0.457
Not on ART versus no	1.23 [0.78–1.94]	0.374
ART is dropped off at home
Yes versus no	0.68 [0.46–1.00]	0.048
Not on ART versus no	1.11 [0.70–1.76]	0.669
Main HIV care provider
Oak Tree^g versus other	1.41 [0.88–2.27]	0.155
Community versus other	1.04 [0.65–1.66]	0.864
Frequency of NIDU^a
Daily versus none	0.92 [0.61–1.40]	0.693
Less than daily versus none	0.84 [0.61–1.17]	0.301
Frequency of IDU^a
Daily versus none	1.27 [0.87–1.86]	0.222
Less than daily versus none	1.12 [0.78–1.60]	0.552
Exchanged sex for money/goods/service^a	1.02 [0.66–1.59]	0.920

Variable was included in the full multivariable model, but not retained in the best fitting model.

Last 6 months.

Inclusive of gay, lesbian, bisexual, two spirit, asexual, queer, or other.

Inclusive of transgender, transsexual, intersex, two spirit, genderqueer, or other.

Inclusive of First Nations, Métis, and Inuit peoples of Canada.

Diagnosis, treatment/monitoring, or counseling/support for anxiety, depression, or post-traumatic stress disorder in the last 6 months.

That limits mobility.

Primary referral center for women living with HIV in British Columbia.

OTC, over the counter; ART, antiretroviral therapy; NIDU, noninjection drug use; IDU, injection drug use.

Discussion

Our study provided evidence of high lifetime (62.2%) and recent (38.5%) HIV disclosure without consent among WLWH in a Canadian setting. Participants reported a variety of perpetrators of HIV disclosure without consent, with friends being most common followed by people in the community, family, and health professionals. Key correlates of HIV disclosure without consent included minoritized sexual identities and recent: housing insecurity; diagnosis, treatment/monitoring, or counseling/support for a mental health condition; and experiencing physical symptoms related to HIV.

Indigenous women are overrepresented in SHAWNA, highlighting impacts of ongoing colonial violence on health equity, including systemic displacement of Indigenous people and oppression of Indigenous women.^26,27 This aligns with Statistics Canada research in BC that indicates Indigenous people, and particularly Indigenous women, are disproportionately represented among those living with HIV.²⁸ Research has demonstrated that HIV is more common among Indigenous people who have survived apprehension into child welfare systems—a successor to residential schools—highlighting ways colonial violence continues to perpetuate health disparities.²⁹ Ongoing racism and discrimination in health care systems alongside a lack of culturally specific and culturally safe resources continue to undermine health equity for Indigenous women.³⁰

Although race was not a significant correlate in our multivariable model, experiences of HIV disclosure without consent are likely intensified for women who have multiple intersecting marginalized identities. Our findings must be interpreted with an understanding that long-standing colonial violence are driving forces behind social and structural inequities, including housing insecurity, mental and physical health, and HIV incidence, and that acts of enacted stigma, such as HIV disclosure without consent, operate at intersections of racism and classism.^31,32 The high proportion of Indigenous women represented in SHAWNA underscores the critical need for culturally safe and specific care, as well as the importance of building trust with Indigenous peoples and health care systems and practices that actively resist re-traumatization.^15,33

We found housing insecurity was associated with greater odds of experiencing HIV disclosure without consent. People living with HIV may face rejection from home or the need to leave unsafe or stigmatizing environments leading to insecure housing when HIV disclosure occurs; these circumstances can be exacerbated if HIV disclosure occurs without consent, for example, from a medical professional to a partner or accidentally, such as if a partner finds ART medications.³⁴ Housing insecurity may increase risk of HIV disclosure without consent as emergency shelters may require disclosure without clear explanations of how this information will be used or shared.³⁵ WLWH experience a disproportionate burden of housing and food insecurity, contributing to a context where women are less able to achieve optimal HIV care outcomes.⁴

The cyclical nature of housing instability underlines the importance of sustainable housing supports to minimize repeated disclosure and potential sharing of disclosure information.³⁶ People living with HIV may be placed in HIV-specific housing without their knowledge or consent, which could be a result of HIV disclosure without consent to other service providers and coordinators that could lead to disclosure without consent to other residents, community members, friends, or family, and potentially lead to further housing instability if residents choose to leave HIV-specific housing to avoid these situations.⁴

Women with a minoritized sexual identity made up nearly half of the study sample and are overrepresented compared to the Canadian population.³⁷ Women with a minoritized sexual identity experienced greater odds of experiencing HIV disclosure without consent, which may be due to perpetrators conflating stigma related to sexuality and HIV as a sexually transmitted and blood-borne infection. Within the HSDF, having a sexual identity that is minoritized presents an additional marker of stigma, which can contribute to enacted stigma and discrimination.¹⁴ Qualitative research from the United States using the minority stress model indicates those with minoritized sexual identities already face an undue burden of stress, discrimination, and erasure, which may be exacerbated when coupled with HIV disclosure without consent.³⁸

Our results showing an association between physical symptoms related to HIV disclosure without consent make sense in the context of other research by our team that suggests physical symptoms of HIV are associated with enacted HIV stigma.⁶ Physical symptoms related to HIV may lead to HIV disclosure without consent as women may be less able to conceal their status and/or require additional/more frequent access of services and supports, contributing to a greater possibility of disclosure without consent in settings that employ stigmatizing practices, such as visible labeling of HIV status on charts.³⁹ The threat of HIV nondisclosure criminalization in Canada can be a significant barrier in health care for women who require care for physical symptoms.⁷ Research indicates that HIV disclosure without consent in health care settings is more common among women and associated with delayed ART initiation, emphasizing the importance of confidentiality in care provision.⁴⁰

Our results indicate that WLWH with recent diagnosis, treatment/monitoring, or counseling/support for a mental health condition (anxiety/depression/PTSD) had increased odds of experiencing HIV disclosure without consent. In a climate of HIV nondisclosure criminalization, existing research indicates fear of HIV disclosure without consent in health care settings is a barrier to care engagement; concerningly, health care providers were responsible for a large proportion of HIV disclosures without consent in our study.⁷

Given the high percentage of HIV disclosures without consent perpetrated by health care providers, WLWH accessing mental health care services are exposed to greater risk of HIV disclosure without consent due to utilization of more services requiring disclosure.³⁹ Health care providers may unnecessarily disclose HIV information without consent to other care providers in providing referrals and coordinating care or services. This may be done with the intention to coordinate better and more efficient care, without intent to cause harm, and/or out of irrational fear of infection or social judgment.¹⁴ Similar to other stigma markers, those with mental health conditions experience an additional intersecting stigma that can contribute to enacted stigma.¹⁴ Further, mental health care is situated in a context of mental health law and paternalism, wherein service users' autonomy has been historically jeopardized.⁴¹

Research among mental health service users highlights the importance of improving autonomy and privacy in mental health care settings,⁴² both pertinent to avoid HIV disclosure without consent. Our findings align with research that suggests experiencing intersecting forms of stigma and discrimination has a negative impact on mental health of WLWH.⁴³ In a context of HIV co-occurring with mental health conditions, findings highlight intersecting forms of enacted stigma, including HIV disclosure without consent and potential impacts on mental health.

Limitations

This study included several limitations as well as strengths. The relatively small sample size may have prevented identification of all associations with HIV disclosure without consent, but repeated measures among participants over time effectively increased statistical power. This study may not be generalizable to all WLWH in Metro Vancouver or other settings. However, SHAWNA recruitment is achieved by broad coverage of multiple communities, AIDS/HIV Service Organizations, and clinical collaborators by our experienced outreach team and reflects a diversity of experiences in our study setting.

While this research presents identification of factors associated with recent HIV disclosure without consent, findings may be subject to social desirability and recall bias, given that all data are self-reported. To minimize these biases, community-based methods were utilized, including experienced interviewers with extensive connections in the community and experience working with key populations. Finally, our estimates of HIV disclosure without consent are limited to those instances where women are aware of disclosure without consent occurring. This likely has resulted in an underestimate of the actual prevalence, particularly in health care contexts where patients are unlikely to know the extent of who is aware of their HIV status.

Implications and recommendations

For women who experience intersecting stigma and discrimination, it remains critical that stigma and discrimination within health care settings, including HIV disclosure without consent, are eliminated to resist re-traumatizing women and to avoid damaging trust between patients and providers.¹⁶ Present findings underscore the importance of services and supports that are responsive to intersecting forms of stigma experienced by WLWH. Housing programs that are gender-responsive, sustainable, confidential, and prioritize autonomy should be supported and expanded to meet needs of WLWH. Correspondingly, assertive HIV care should be tailored to meet individual needs for privacy at women's discretion and with their consent to prevent incidental HIV disclosure without consent.⁴⁴ Legislative reform that includes meaningful engagement of people living with HIV to remove HIV nondisclosure from the reach of the criminal law remains critical in addressing structural stigma, violence, and supporting safe disclosure.⁸

Moreover, legislation should focus on protecting rights of WLWH, promoting equity, guaranteeing sexual and reproductive rights, and ensuring access to essential services and privacy.¹² Interventions such as mandated training of health care and service providers designed with and for WLWH that addresses intersecting forms of stigma and HIV disclosure without consent are recommended and should include a focus on transparency around how disclosure information is used, mental health, and trauma-informed approaches, and be responsive to experiences of persons with minoritized and marginalized sexual and gender identities.¹⁸

Our findings call for action in line with Canada's commitment to the United Nations Declaration on the Rights of Indigenous Peoples, including Article 24.1 wherein Indigenous people have the right to access health and social services without any discrimination and Article 24.2, including the right to the highest standards of physical and mental health.⁴⁵ In accordance with the Truth and Reconciliation Commission Calls to Action, we recommend support for and expansion of culturally specific Indigenous programs and services, in addition to training for health care professionals that supports cultural safety and protection of human rights.³²

Peer support or community awareness initiatives remain critical to reduce and respond to impacts of HIV disclosure without consent and stigma.⁴⁶ Improving confidentiality and safe disclosure practices may also include utilizing private areas to discuss HIV-related information and employing counselors and/or peers to support navigating disclosure processes.⁴⁰ Trauma-informed principles underscore the importance of autonomy, building trust, and awareness of oppression, aligning with recommendations to minimize HIV disclosure where possible and supporting disclosure practices at women's discretion with improved transparency around how disclosure information is utilized or shared and awareness of stigmatization that WLWH experience, especially through HIV disclosure without consent.^15,16

Our findings highlight intersections of stigmatization associated with HIV disclosure without consent, including housing insecurity, physical symptoms related to HIV, sexuality, and diagnosis, treatment/monitoring, or counseling/support for a mental health condition, underlining the critical need for improved awareness of intersecting experiences of stigma, trauma-informed responses in health care and social systems, and importance of confidentiality and supporting safe disclosure practices at women's discretion. Programs and services, including supportive housing, for women with marginalized and minoritized sexual and gender identities, and physical and mental health conditions should incorporate low-barrier and trauma-informed practices developed by and for WLWH to eliminate the need for HIV disclosure and potential for disclosure without consent. It is critical that intersections of social and structural stigma be addressed in conjunction with legislative reform that abolishes discriminatory laws and practices that regulate HIV nondisclosure. Protection of human rights and confidentiality of WLWH remains a priority.

Footnotes

Acknowledgments

We thank all those who contributed their time and expertise to this project, particularly participants, the Positive Women's Advisory Board, Community Advisory Board members and partner agencies, and the current SHAWNA research project staff, including Elissa Aikema, Tara Axl-Rose, Emma Kuntz, Melanie Lee, Lois Luo, Desire King, Patience Magagula, Kat Mortimer, Candice Norris, Colleen Thompson, and Larissa Wakatsuki. We also thank Melissa Braschel, Hanah Damot, Riley Tozier, Kate Milberry, Shivangi Sikri, Amber Stefanson, and Peter Vann, for their operations, communications, research, and administrative support and Mary Kestler from Oak Tree Clinic, the Study Physician.

Authors' Contributions

M.S.O.: conceptualization, methodology, writing—original draft preparation, and writing—review and editing. K.S.: writing—review and editing and funding acquisition. A.K.: writing—review and editing. M.L.: investigation and writing—review and editing. D.K.: investigation and writing—review and editing. M.B.: methodology, validation, formal analysis, and data curation. K.N.D.: conceptualization, methodology, resources, supervision, funding acquisition, and writing—review and editing.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This research was supported by grants from the Canadian Institutes of Health Research (PJT-169119) and US National Institutes of Health (1R01MH123349-01A1) National Institute of Mental Health, as well as the Canadian HIV Trials Network (CTN-333).

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