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Published in final edited form as: AIDS Behav. 2024 Sep 23;28(11):3919–3928. doi: 10.1007/s10461-024-04456-2

STIGMA, DISCRIMINATION AND OTHER SOCIAL-STRUCTURAL FACTORS ASSOCIATED WITH BARRIERS TO COUNSELLING OR THERAPY AMONG WOMEN LIVING WITH HIV WHO HAVE EXPERIENCED VIOLENCE IN METRO VANCOUVER, CANADA

Colleen Dockerty 1,2, Kate Shannon 1,2, Wendee Wechsberg 3, Colleen Thompson 1,2, Mary Kestler 1,2, Melissa Braschel 1,2, Kathleen Deering 1,2
PMCID: PMC11588149  NIHMSID: NIHMS2028375  PMID: 39307899

Abstract

Women living with HIV face high social and structural inequities that place them at heightened risk for gender-based violence and mental health conditions, alongside health services access inequities, with almost no research done to better understand access to mental health services. This study therefore examined social and structural factors associated with barriers to counselling or therapy amongst women living with HIV who experienced lifetime physical and/or sexual violence in Metro Vancouver, Canada. Bivariate and multivariable logistic regression using generalized estimating equations (GEE) were used and adjusted odds ratios (AOR) and 95% Confidence Intervals ([95%CIs] are reported). From Sept/15-Aug/21, 1695 observations were collected among 279 participants. In multivariable analysis, with all variables measured in the last six months, experiencing any barriers to counselling or therapy was significantly associated with having thoughts or attempts of suicide (AOR:1.64 [1.02–2.66]), lacking coverage for health care (AOR:1.60 [1.17–2.18]), and everyday discrimination (AOR:1.02 [1.00–1.04]) and anticipated (AOR:1.57 [1.04–2.36]), enacted (AOR:1.48 [1.02–2.16]) or internalized (AOR:1.53 [1.07–2.20]) HIV stigma. Access to interdisciplinary mental health care services should be improved. Social and structural interventions to reduce HIV stigma and discrimination are urgently needed.

Keywords: Gender-based Violence, Interpersonal Violence, Trauma-informed Practice, Health Services Access, Trauma, Counselling, Barriers to Mental Health care

INTRODUCTION

A global participatory quantitative survey found that 89% of women living with HIV reported experiencing or fearing violence, including before, since and/or because of their HIV diagnosis, with women experiencing higher levels of violence following HIV diagnosis [1]. Gender-based violence is an umbrella term for any harmful act that is perpetrated against a person’s will and is based on socially ascribed gender differences, and includes acts that inflict physical, sexual or mental harm or suffering, threats of such acts, coercion, and other deprivations of liberty [2]. Gender-based violence is recognized as a global public health and human rights problem. Globally, 35.6% of women have ever experienced physical and/or sexual violence by an intimate partner and 14% of women reported sexual violence by a non-partner [3]. A 2018 population-based study found that > 11 million Canadians have experienced gender-based physical and/or sexual violence since the age of 15, with women experiencing higher levels of most types of violence [4, 5]. In our study setting, 94.8% of women living with HIV reported lifetime physical violence and 84.5% reported lifetime sexual violence [6].

There is a high prevalence of anxiety, depression, post-traumatic stress disorder (PTSD), criminalized substance use among people living with HIV and/or women living with HIV [7, 8], alongside evidence to suggest that gender-based violence is associated with these and other mental health outcomes [9, 10]. Evidence suggests that women living with HIV are inadequately treated for depression, PTSD and anxiety [11, 12], alongside addictions treatment, suggesting a strong potential unmet need for counselling and other mental health services. Global mental health associations recommend counselling and/or psychotherapy for people with anxiety, depression, and PTSD [13, 14], and that people with a pre-diagnosed mental health condition who experience gender-based violence should receive psychological therapy or mental health care by professionals with an understanding of and training on gender-based violence [15]. In Canada, there is no single widely accepted definition of counselling, psychotherapy or psychological services, with a number of different practitioners of mental health services (e.g., family doctors, counsellors, psychologists, social workers) [16]. People may have high self-perceived and expressed need for counselling regardless of whether or not they meet criteria for a mental disorder diagnosis [17, 18]. A person’s expressed unmet need for mental health care is related to their perception of their own distress, functional impairment, or disability [19,20,21]. The 2018 Canadian Community Health Survey reported that 17.8% of Canadians aged 12 and older reported a need for some help with mental health or substance use in the previous year. Among those who reported needing mental health care, 34.1% had an unmet need for counselling and 15.9% had a partially unmet need for counselling [22].

The vast majority of research on social and structural barriers to health services access with women living with HIV has been on access to HIV services and medication and there is no research that we are aware of that examines barriers to mental health services among women living with HIV, despite demonstrated need [23]. Existing research among general populations shows that individual barriers to accessing mental health services include self-reliance, low-perceived need for treatment, perceived ineffectiveness, and a lack of knowledge, while structural barriers include a lack of availability and cost [20, 22, 24,25,26]. Evidence suggests that women living with HIV face high social and structural inequities, and in particular, intersecting forms of discrimination, stigma and oppression that place them at heightened risk for gender-based violence alongside health services access inequities [6, 27]. Many quantitative survey studies show that HIV stigma has been identified as a primary barrier to HIV-related health services access among people living with HIV [23]. In Canada, Indigenous, Black and other racialized women are overrepresented among women living with HIV as a result on ongoing and historic colonial violence and structural racism and experience high levels of gender-based violence and barriers to health services access [28]. Indigenous, Black and other racialized women experience systemic racism within all institutional settings and health and social system [29]. There is limited research investigating how experiences of health services access vary among women living with HIV according to gender identity and expression and the lack of perspectives of trans, non-binary and Two-Spirit Indigenous persons in Canada is a serious research gap. Transphobia and homophobia are identified as primary barriers to health services access among people with marginalized and minoritized sexual and gender identities [30]. Research from our settings suggests that women living with HIV with marginalized and minoritized sexual and gender identities experience poor treatment by health professionals and are more likely than cisgender (cis)/heterosexual women to be unable to access health services when needed [31]. A number of other social, mental health and mental health services inequities intersect with and are embedded within systems of oppression and violence, and are overrepresented among women living with HIV, including criminalization, incarceration, criminalized injection and non-injection drug use, poverty and economic, employment and food insecurity [32, 33]. This study therefore investigated social and structural factors associated with barriers to counselling amongst women living with HIV in Metro Vancouver, Canada.

MATERIALS AND METHODS

Study Design and Sampling

Data were drawn from September 2015 to August 2021 among a longitudinal community-based participatory open cohort of cis and trans (trans, transgender, transsexual, other transfeminine identity) women 14 years or older living with HIV who live and/or accessed care in Metro Vancouver, Canada (2014-present) (Sexual Health and HIV/AIDS: Women’s Longitudinal Needs Assessment “SHAWNA”). SHAWNA is a partnership of 10–15 women’s HIV and community service providers and is guided by a Community Stakeholder Advisory Board that meets annually, and a Positive Women’s Advisory Board that meets every 2–3 months. SHAWNA was developed from over six months of community consultations with women living with HIV, HIV care providers and policy experts. Participants are recruited based on self-referrals and referrals from HIV care providers, HIV/AIDS service organizations and clinical outreach, including BC’s primary referral centre for women living with HIV (Oak Tree Clinic, BC Women’s Hospital). Participants who have provided informed consent complete a semi-annual questionnaire at baseline and every six-months, administered by trained community interviewers. In a visit with the study nurse, participants complete HIV viral load/CD4 measurements and are offered testing for sexually transmitted infections as well as education and referrals to other needed health and social services. At each visit, participants receive $65 CAD (Canadian dollars) remuneration for their time, travel, and expertise. SHAWNA holds ethical approval through Providence Health/University of British Columbia Research Ethics Board and BC Women’s Hospital.

Measures

Outcome Variable

The outcome variable was barriers to counselling, defined as responding yes to “In the last six months, have you experienced any barriers to counselling or therapy for sexual abuse?” and/or “In the last six months, have you experienced barriers to counselling or therapy for any other trauma or violence you may have experienced?”. We limited the study sample to women who had reported ever experiencing physical and/or sexual violence.

Social-structural Explanatory Variables

Explanatory variables were selected based on a priori knowledge and social and structural determinants of health and social ecological frameworks [34,35,36]. These frameworks provide a guide for understanding how complex social, economic, and environmental factors shape health and health services access outcomes. We chose variables based on availability of data at the time of this study and to fit in with broad categories of social determinants of health, including employment and working conditions (e.g., sex work vs. other employment), income and social status (housing insecurity vs. housing security, coverage for health care; incarceration), social supports and coping skills/healthy behaviors (e.g., criminalized drug use; mental health symptoms), access to health services (e.g., main HIV provider; access to primary health care). We interpreted all variables related to social identities (e.g., race/ethnicity, sexual identity, gender identity, im/migrant status in the context of oppression and structural violence (e.g., racism, homophobia, transphobia). We included only criminalized drug use, as there are many intersections between criminalization as a social-structural factor and sub-optimal and stigmatizing health care services access. At the same time we also were able to directly measure broad experiences with multiple forms of HIV stigma and everyday discrimination. Variables are described in detail here.

Time-fixed variables included: race, including self-identified Indigenous (inclusive of First Nations, Métis, and Inuit), Black and other racialized identity (African, Caribbean, Black, Latin American, Asian, other), vs. only reporting White. The term Indigenous is used throughout while recognizing the great diversity across and within languages, cultures, nations and lands. While descriptive data were disaggregated, given the small sample size of Black participants, comparable B.C.’s population, Black and women with other racialized identities were combined in bivariate and multivariable analysis. We included measures for sexual identity (sexual minority identity (Footnote 1) at any study visit versus heterosexual at all study visits), gender identity (gender minority (Footnote 2) at any study visit, non-binary (Footnote 3) versus cisgender at all visits). Only Indigenous participants, were asked if they identified as Two-Spirit, an identity among people Indigenous to Turtle Island who identify as having both a masculine and a feminine spirit, and may be used to describe any or all of sexual, gender and/or spiritual identity; however, this depends on the individual and context [37]. Participants had the option to provide more than one response to sexual orientation and gender identity. Based on evidence that minority stress processes affect all members of gender minority communities relative to cisgender people [38], and members of sexual minority communities relative to heterosexual communities for the purposes of analyses [39], we combined participants with sexual minority identities into one group and gender minority identities into one group.

Current age was time-updated at each study visit. All of the following social-structural variables were time-updated and measured in the last six months. These include being unhoused; housing insecurity, defined as unsheltered or otherwise unstably housed per the Canadian Observatory of Homelessness definition of sex work [40], using any non-injection drugs (excluding alcohol and cannabis); using any injection drugs; having thoughts of or attempted suicide; being in jail or prison overnight or longer; being unable to access primary health care; lacking coverage for any health care, including extended health care; and current main HIV care provider [Oak Tree Clinic, Community Clinic vs. Another Clinic]. HIV stigma was measured using nine questions from Wright’s shortened 10-item version of Berger’s HIV stigma Scale, previously used in our research [41, 42]. Each of the sub-scales (perceived, anticipated, enacted, and internalized HIV stigma) were dichotomized as yes (‘Agree’ or ‘Strongly Agree’ to any item) versus no (‘Strongly Disagree’, ‘Disagree’, ‘Neither Disagree or Agree’ to all items). Discrimination was measured using the Everyday Discrimination Scale with a minimum of 9 and maximum of 45 [43]. HIV status disclosure without consent was measured as a proxy for specific and important type of enacted HIV stigma, critical as a barrier to health services access, using the survey item: “Has anyone “outed” you for knowing or suspecting you were HIV positive?”.

Analysis

Descriptive statistics included frequencies and proportions for categorical variables, and measures of central tendencies (i.e., mean, medians, and interquartile ranges [IQRs]) for continuous variables, for all social-structural variables included in bivariate logistic regression. For descriptive purposes, we also assessed variables that measure if participants were monitored, diagnosed or treated for the following mental health conditions in the last six months: depression, anxiety, post-traumatic stress disorder (PTSD), and any mental health condition, all self-reported; these were not included in regression models in favor of another variable that more closely measured symptoms of emotional distress (thoughts and/or attempts of suicide). Bivariate and multivariable logistic regression, using generalized estimating equations (GEE) with an exchangeable correlation structure, were used to assess the associations between social-structural factors and the outcome. Variables associated with the outcomes at p < 0.10 in bivariate analysis were considered for inclusion in the multivariable models. Beginning with full models, we used manual backwards selection to identify the best fitting models, as indicated by the lowest quasi-likelihood under the independence model criterion (QIC). All p-values are two sided, and odds ratios (ORs) and adjusted odds ratios (AORs) with 95% confidence intervals (CIs) are reported. SAS version 9.4 was used for statistical analyses (SAS Institute Inc., Cary, North Carolina, USA).

RESULTS

The study sample included 279 participants who had ever experienced physical or sexual violence, with 1695 total observations over the study period of September 2015 to August 2021. Table 1 presents demographic, social and structural factors reported at participants’ baseline interview. The median age of participant was 46 (IQR-39–52) at baseline. A total of 130 (46.6%) reported marginalized and minoritized sexual identities, and 8.9 (24) reporting marginalized and minoritized gender identities; 7.2% (n = 20) reported trans identities and 3.2% (n = 9) reported non-binary identities. Among Indigenous participants, 20 (12.8%) reported Two-Spirit identity. Indigenous participants were overrepresented in this sample at 55.9% (n = 156) relative to the population of British Columbia (5.9% of in 2016 by Statistics Canada) [44]. The sample also included 34.8% (n = 97) White women, 4.7% (n = 13) Black women, and 4.7% (n = 13) other women of colour/racialized women. We also report the prevalence at baseline/first interview for being diagnosed, monitored and/or treated for the following variables in the last six months: depression (19.4%, n = 54); anxiety (10.4%, n = 29); PTSD (5.7%, n = 16); and any mental health condition (10.0%, n = 28). The prevalence of these variables in participants’ lifetimes and over the study period were: 64.2%, n = 179 (depression), 55.2%, n = 154 (anxiety), 35.1%, n = 98 (PTSD), and 73.5%, n = 205 (any mental health condition). Throughout the study period, 13.6% had experienced barriers to counselling.

TABLE 1.

Baseline characteristics of women living with HIV (WLWH) in Vancouver, BC who had experienced lifetime physical and/or sexual violence (N = 279)

Outcomes Total (%) Number of Missing (%)
Experienced any barriers to counselling or therapya 38 (13.6%) 4 (1.43)
Social-demographic characteristic
Age (median, IQR) 46 (39–52) -
Gender minority identityb 32 (11.5%) -
Sexual minority identityc 130 (46.6%) -
Race
 White 97 (34.8%) -
 Indigenousd 156 (55.9%)
 Black/other racialized personse 26 (9.4%)
Im/migrated to Canada 26 (9.3%) -
Social-structural characteristics
Any insecure housinga 162 (58.1%) -
Sex worka 63 (22.6%) 1 (0.36%)
Used any criminalized non-injection drugsa 119 (42.7%) 1 (0.36%)
Used any criminalized injection drugsa 125 (44.8%) 1 (0.36%)
Had thoughts of or attempted suicidea 31 (11.1%) 2 (0.72%)
Incarcerateda 11 (3.9%) 5 (1.79%)
Unable to access primary health carea 47 (16.9%) -
Lacked coverage for any health carea 68 (24.4%) -
Main HIV care provider (current)
 Oak Tree Clinic 98 (35.1%) 12 (4.3%)
 Community Clinic 110 (39.4%)
 Other Clinic 59 (21.2%)
Everyday discrimination scalea (Median, IQR) 17 (11–24) 9 (3.2%)
Perceived HIV stigmaa 102 (36.6%) 25 (9.0%)
Anticipated HIV stigmaa 190 (68.1%) 11 (3.9%)
Enacted HIV stigmaa 108 (38.7%) 21 (7.5%)
Internalized HIV stigmaa 76 (27.2%) 13 (4.7%)
HIV status disclosure without consenta 45 (16.1%) 14 (5.0%)
Open in a new tab
a

In the last six months

b

Any of transgender, intersex, transexual, Two-Spirit Indigenous person, genderqueer, other

c

Any of gay, lesbian, bisexual, two spirit, asexual, queer, other

d

Any of First Nations, Metis, or Inuit

e

Any of African, Caribbean, Black, East/South/Southeast Asian, Middle Eastern, and other racialized/person of colour

In multivariable analysis (Table 2), thoughts of or attempted suicide in the last six months (AOR = 1.64 [1.02–2.66]), lacking coverage for any health care in the last six months (AOR = 1.60 [1.17–2.18]), everday discrimination (AOR: 1.02 [1.00–1.04]), anticipated HIV stigma in the last six months (AOR = 1.57 [1.04–2.36]), enacted HIV stigma in the last six months (AOR = 1.48 [1.02–2.16]), internalized HIV stigma (AOR = 1.53 [1.07–2.20]) were statistically significantly associated with increased odds of having barriers to counselling or therapy in the last six months.

TABLE 2.

Unadjusted and adjusted odds ratios with 95% confidence intervals (95% CI) and p-values for social-structural factors correlated with experienced any barriers to counselling or therapy for sexual abuse, violence and/or traumaa among women living with HIV (N = 279, 2015–2021)

Unadjusted Adjusted
Odds Ratio (95% CI) P-value Odds Ratio (95% CI) P-value
Age, per year older 1.01 (0.99–1.03) 0.231
Gender minority identityb 0.92 (0.53–1.60) 0.778
Sexual minority identityc 1.19 (0.81–1.74) 0.376
Race (vs. White)
 Indigenousd
 Black/ Other racialized personse 		0.99 (0.64–1.52)
1.09 (0.45–2.63)		 0.955
0.844
Im/migrated to Canada 1.92 (0.92–4.02) 0.084
Any insecure housinga 1.30 (0.96–1.76) 0.088
Sex worka 0.89 (0.62–1.26) 0.510
Criminalized non-injection drug usea 1.10 (0.82–1.46) 0.530
Criminalized injection drug usea 0.85 (0.63–1.14) 0.274
Thoughts of or attempted suicidea 2.33 (1.49–3.66) <0.001 1.64 (1.02–2.66) 0.043
Incarcerateda 2.34 (1.07–5.11) 0.033
Unable to access primary health carea 1.56 (1.12–2.17) 0.009 1.39 (0.96–2.02) 0.085
Lacked coverage for any health carea 1.72 (1.29–2.29) <0.001 1.60 (1.17–2.18) 0.003
Main HIV care provider (vs. other clinic)
 Oak Tree Clinic Community
 Clinic Community clinic		 1.26 (0.79–2.01)
0.94 (0.58–1.53)		 0.330
0.811
Everyday discrimination scalea 1.04 (1.02–1.06) <0.001 1.02 (1.00–1.04) 0.081
Perceived HIV stigmaa 1.54 (1.14–2.09) 0.005
Anticipated HIV stigmaa 1.91 (1.34–2.73) <0.001 1.57 (1.04–2.36) 0.031
Enacted HIV stigmaa 2.08 (1.50–2.89) <0.001 1.48 (1.02–2.16) 0.041
Internalized HIV stigmaa 2.26 (1.61–3.17) <0.001 1.53 (1.07–2.20) 0.022
HIV status disclosure without consenta 1.73 (1.25–2.41) 0.001
Open in a new tab
a

In the last six months

b

Any of transgender, intersex, transexual, Two-Spirit Indigenous person, genderqueer, other

c

Any of gay, lesbian, bisexual, two spirit, asexual, queer, other

d

Any of First Nations, Metis, or Inuit

e

Any of African, Caribbean, Black, East/South/Southeast Asian, Middle Eastern, and other racialized/person of colour

DISCUSSION

Our study identified social and structural factors associated with barriers to counselling or therapy among women living with HIV, including lack of health care coverage, thoughts/attempts of suicide, everyday discrimination and HIV stigma. Our study has important implications for public health policy to address barriers to mental health care among women living with HIV.

Cost of services, including counselling, remains a substantial barrier to access to mental health services. People without health care coverage face barriers to primary, maternity, sexual and reproductive health care [45, 46]. Financial barriers are exacerbated for people with lower incomes and people without employment benefits [24, 47, 48], who may not be able to afford to pay out of pocket or access counselling through employment-based insurance and are more likely to access publicly funded counselling with long-wait lists [18]. Further, approximately 9% of our study sample includes women who report being im/migrants; immigration status is in itself a barrier to all health care coverage, as im/migrants are temporarily excluded from health care coverage due to three month waiting periods, are entirely excluded from health care coverage due to precarious status, and usually cannot seek private health insurance [45, 49].

Having suicidal thoughts may be indicative of increased mental or emotional distress. Evidence suggests that people with higher distress have more than twice the odds of having an unmet or a partially met counselling need (rather than a met need), compared with those with low distress [50]. There is a wide body of literature that links some mental health conditions and symptoms, and in particular depression, to reduced access to HIV treatment and care. Women with thoughts of suicide may, however, have more contact with the mental health care system overall – and as such be more likely to experience, identify and report barriers to access, availability, adequacy, quality and satisfaction – such as counselling not delivered in a timely manner [51], or had a negative experience with the provider [17].

Everyday discrimination, and enacted, internalized and anticipated HIV stigma were associated with increased odds of barriers to counselling or therapy in our study. Multiple forms of HIV stigma and discrimination have widely been recognized as barriers to HIV prevention and treatment services [52, 53], and to health and social services [54]. Enacted stigma and discrimination are based on experiences of negative reactions, stigmatizing behaviours, mistreatment, rejection, exclusion and violence [41, 55, 56]. Enacted HIV stigma can include a lack of sensitivity to privacy and poor treatment by heath care providers, being advised not to become pregnant, HIV disclosure without consent [41], and other stigmatizing experiences with health professionals, negative, disrespectful attitudes and practices, and a denial of care [41, 57, 58], that can act as barriers to health care access [55]. Stigma and discrimination from health care providers has found be lead to decreased access to health care amongst PLWH [59, 60]. Internalized stigma is an internalized negative sense of self-worth, value, and feelings and an acceptance of society’s negative beliefs and views about living with HIV [41, 55]. Existing research has shown that people living with HIV who experience high internalized HIV stigma were less likely to ever have attended an HIV support group [61]; and have gaps in medical care [62]; and more likely to have lower self-efficacy, greater helplessness [62], and self-imposed social isolation [56], all of which may be barriers to access to counselling and therapy. Anticipated stigma is the anticipated fear and expectation of mistreatment and rejection following disclosure of HIV status and the consequences of disclosure of their HIV status [56]. Women living with HIV who anticipate stigmatizing attitudes and behaviors from others may be less likely to take actions that they fear may increase the likelihood of such attitudes and behaviors from others [56].

Our study has important implications for programming and policy. First, gender-based violence must be addressed at an individual, relationship, community and social level. Evidence-based prevention strategies include transforming harmful attitudes and beliefs through education and community mobilization, economic empowerment, interventions for children and adolescents subjected to child maltreatment and/or exposed to intimate partner violence, and school-based training to prevent child sexual abuse and dating violence during adolescence [63]. At a structural level, addressing gender inequities is central to improving the health and wellbeing of women living with HIV by promoting non-violent norms and equitable decision-making, address economic inequities and stigma and discrimination [64]. Evidence-based strategies to mitigate the consequences of gender-based violence involves a range of services including police, legal, health, and social services provided to survivors [63]. These services should be trauma- and violence-informed, women-centred and trans-inclusive, and offer psychosocial support, advocacy, counselling, risk assessments, safety planning, information about rights, resources, and referral to services [65].

HIV stigma and discrimination need to be reduced to help create an enabling environment for women living with HIV to seek counselling support. Training can be an effective way of reducing enacted stigma and discrimination in health care settings [53], but there is a need for increased education among mental health care providers about HIV and the need for non-judgmental attitudes, alongside improving privacy and confidentiality to reduce stigma and discrimination against women living with HIV seeking health care [60]. Other interventions should include supporting communities to address and respond to discrimination and strengthening social/peer support. There are specific evidence-based strategies to help people cope with internalized stigma and reduce anxiety and depression related to internalized stigma, including education about HIV with families and communities [66, 67], and skills to build strengths [68].

There have been many recent calls to improve access to mental health services in Canada [18]. Mental health and counselling services in Canada are underfunded [47, 69], and increased funding for mental health care and counselling is needed with an equity focus to promote access for people without or with inadequate private insurance plans [18, 47]. Mental health services simply do not exist for people who cannot afford to pay privately and/or do not have access to coverage through extended care and for many women living with HIV, intersections between mental health conditions, economic, food and employment insecurity pose ongoing barriers to accessing counselling and other types of mental health services. Mental health services covered under the provincial medical services plan may be accessible to treat severe mental health conditions/disabilities (e.g., community mental health teams) or acute conditions (e.g., emergency room/hospital treatment), but counselling services tailored to meet the needs of women living with HIV with respect to needed number of sessions, quality, and experience and/or expertise working with people experiencing multiple barriers. Eliminating the exclusionary mandatory three-month wait for provincial health insurance could improve access to mental health services for im/migrants [70]. Gaps in the counselling workforce must be addressed [47], including building a counselling workforce that is collaborative, diverse according to gender identity, sexual orientation, race, and culture/ethnicity, has the skills to meet the needs of women living with HIV [69].

Trauma- and violence-informed practice and principles, which have been extensively drawn on in shaping programs and policies to address mental health and addictions, should be incorporated into all counselling services, and recognizes the widespread impact of trauma and understands potential paths for recovery; recognizes the signs and symptoms of trauma in clients, families, staff, and others involved with the system; and responds by fully integrating knowledge about trauma into policies, procedures, and practices, and seeks to actively resist re-traumatization [71, 72]. All services should incorporate culturally safe approaches to meet the mental and emotional needs of Indigenous women and support healing. Access to elders, traditional healers and ceremonies and land-based programs should be a foundational part of counselling services tailored with and for Indigenous women living with HIV. Culturally appropriate programs that take into different understandings of mental health issues within different cultures should be developed. Interdisciplinary services could help support access to mental health services – for example, Oak Tree Clinic in Vancouver is a trauma- and violence-informed, interdisciplinary clinic that offers women-centred, holistic and specialized HIV and women’s health care, and includes mental health services on-site to facilitate access [73].

This study had limitations as well as strengths. This study may not be representative of all women living with HIV in Metro Vancouver, may not be generalizable to Metro Vancouver or other settings. The sample may overrepresent women living with HIV who are connected with HIV services and care due to the recruitment through clinical settings and community organizations. Since we limited our multivariable results to women living with HIV who had ever experienced physical and/or sexual violence and who had a current main HIV provider, in order to better understand how the type of HIV provider was associated with barriers to counselling, we were unable to assess if not having an HIV provider was associated with barriers to counselling. Future research could seek to understand the key role of HIV providers in facilitating access to mental health services, including through interdisciplinary approaches. Due to the nature of self-reporting during the survey, there may be a social desirability and recall bias. However, the experience, empathy and training of community interviewers is expected to minimize these biases. The relatively small sample size may have prevented detection of all associations with the outcomes, but the use of repeated measures among participants over time effectively increases statistical power. While this study did include trans women and non-binary people, further research is required on the specific barriers to and needs for counselling for trans women and non-binary people living with HIV.

CONCLUSION

Access to interdisciplinary mental health care services should be improved to address the unmet needs of women living with HIV, including services that are trauma- and violence-informed, gender-inclusive, culturally safe and culturally appropriate. Social and structural interventions to reduce HIV stigma and discrimination are urgently needed.

Acknowledgements

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: Elle Aikema, Yasmin Botelho Canabrava, Kathleen Deering, Tanya Ghai, Parisa Kabir, Desire King, Emma Kuntz, Beatrix Lehmann, Melanie Lee, Alex Martin, Kat Mortimer, Mika Ohtsuka, Amanda Tallio, Colleen Thompson, Esteban Valencia, Larissa Wakatsuki and Charlie Zhou. We also thank the current administrative/operations/knowledge translation and communications teams at the Centre for Gender and Sexual Health Equity supporting SHAWNA, including Altaira North, Ollie Norris, Shivangi Sikri, Peter Vann. We also thank our Study Physician, Dr. Mary Kestler.

Funding

The SHAWNA Project is financially supported by the Canadian Institutes of Health Research (PJT169119) and US National Institutes of Health (R01MH123349), as well as Canaadian HIV Trials Network (CTN-333).

Footnotes

Conflict of Interest

The authors have no potential conflicts of interest to declare.

1.

inclusive of lesbian, gay, bisexual, asexual, Two-Spirit, queer, other.

2.

inclusive of trans, transgender, transsexual, other transfeminine identity.

3.

non-binary, genderqueer, and/or Two-Spirit.

Data Availability

In accordance with data access policies, our ethical obligation to research that is of the highest ethical and confidentiality standards, and the highly stigmatized nature of this population, anonymized data may be made available on request to researchers subject to the UBC/ Providence Health Ethical Review Board, and consistent with our funding body guidelines (NIH, CIHR). The UBC/ Providence Health Ethics Review Board may be contacted at 604-683-2344.

REFERENCES

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

In accordance with data access policies, our ethical obligation to research that is of the highest ethical and confidentiality standards, and the highly stigmatized nature of this population, anonymized data may be made available on request to researchers subject to the UBC/ Providence Health Ethical Review Board, and consistent with our funding body guidelines (NIH, CIHR). The UBC/ Providence Health Ethics Review Board may be contacted at 604-683-2344.

RESOURCES