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. Author manuscript; available in PMC: 2023 Jun 1.
Published in final edited form as: J Interpers Violence. 2021 Jan 6;37(11-12):NP9926–NP9952. doi: 10.1177/0886260520983257

Interpersonal violence and other social-structural barriers associated with needing HIV treatment support for women living with HIV

Margaret Erickson 1, Kate Shannon 1,2, Flo Ranville 1, Patience Magagula 3, Melissa Braschel 1, Andrea Ratzlaff 4, Neora Pick 2,5, Mary Kestler 2,5, Kathleen Deering 1,2; on behalf of the SHAWNA Project
PMCID: PMC8507564  NIHMSID: NIHMS1745303  PMID: 33403922

Abstract

Women living with HIV (WLWH), experience disproportionate rates of violence, along with suboptimal HIV health outcomes, despite recent advancements in HIV treatment, known as antiretroviral therapy (ART). The objectives of this study were to: (a) describe different types of support needed to take ART and (b) investigate the social and structural correlates associated with needing support for ART adherence among WLWH. Data are drawn from Sexual health and HIV/AIDS: Women’s Longitudinal Needs Assessment, a community-based open research cohort with cisgender and transgender WLWH, aged 14+ who live or access HIV services in Metro Vancouver, Canada (2014–present). Baseline and semi-annual questionnaires are administered by community interviewers alongside a clinical visit with a sexual health research nurse. Bivariate and multivariable logistic regression using generalized estimating equations and an exchangeable working correlation matrix was used to model factors associated with needing supports for ART adherence. Among 276 WLWH, 51% (n = 142) reported needing support for ART adherence; 95% of participants reported lifetime gender-based violence and identified many interpersonal, structural, community, and clinical supports that would facilitate and support ART adherence. In multivariable logistic regression, participants who were Indigenous (adjusted odds ratio [AOR]: 1.70, 95% confidence intervals [CI]: 1.07–2.72), or otherwise racialized (AOR: 2.36, 95% CI : 1.09–5.12) versus white, experienced recent gender-based physical violence (AOR : 1.54, 95% CI : 1.03–2.31), lifetime post-traumatic stress disorder (AOR : 1.97, 95% CI : 1.22–3.18), and recent illicit drug use (AOR : 2.15, 95% CI : 1.43–3.22), had increased odds of needing support for ART adherence. This research suggests a need for trauma-informed, culturally safe and culturally responsive practice and services for WLWH along the HIV care continuum to support ART adherence. All services should be developed by, with, and for WLWH and tailored according to gender identity, taking into account history, culture, and trauma, including the negative impacts of settler colonialism for Indigenous people.

Keywords: ART adherence, HIV, PTSD, alcohol and drugs, cultural contexts, domestic violence, trauma, trauma-informed care, women

INTRODUCTION

Women living with HIV (WLWH) experience a range of social inequities and barriers to optimal health including heighted experience of gender-based violence and trauma (Lichtenstein, 2006; Machtinger et al., 2012; Orza et al., 2015). These experiences can lead to adverse outcomes such as post-traumatic stress disorder (PTSD) (Dutton et al., 2006; Machtinger et al., 2012); research from the United States indicates that the rate of PTSD among WLWH is 5-times the rate for the general population of women (Machtinger et al., 2012).

Adherence to antiretroviral therapy (ART) is a critical component of the HIV care continuum - a public health model describing the stages of HIV care (Hull et al., 2012) from diagnosis to achieving and maintaining viral suppression (a very low or undetectable amount of HIV in the body). Optimal ART adherence (>=95%) is associated with reduced viral load and improved health outcomes among people living with HIV (PLWH) (Paterson et al., 2000; Stricker et al., 2014). However, research that disaggregates HIV care outcomes by gender is limited, as is research aimed at exploring specific barriers to adherence for WLWH. In Canada, approximately one-quarter of all PLWH are women (Public Health Agency of Canada, 2018). Yet despite living in a setting where HIV care and treatment is provided free of charge, coupled with recent improvements in HIV treatment aimed at facilitating adherence (Nachega et al., 2014), WLWH in Canada continue to experience gaps in HIV health outcomes, including with regards to adherence (British Columbia Centre for Excellence in HIV/AIDS, 2019). These findings around gender disparities in HIV outcomes are also mirrored in other high-income countries (Puskas et al., 2011). As such, there remains a need to examine barriers and facilitators to adherence for WLWH in order to design gender-specific programs to support adherence and improve health outcomes for this population.

An array of factors across settings affect adherence to HIV medications for WLWH. In addition to medication-related factors such as complex medication schedules and regimens, alongside side effects, research has shown that interpersonal factors such as having an intimate partner (P. Duff et al., 2016), or experiencing intimate partner violence (IPV) (Espino et al., 2015; Hatcher et al., 2015), are associated with significantly reduced HIV viral load suppression. IPV is associated with reduced engagement in HIV care and treatment (Hatcher et al., 2015; Siemieniuk et al., 2013), with some WLWH experiencing violence based on their HIV disclosure, and others withholding their HIV status in fear of violence (Medley et al., 2004). Qualitative research indicates several ways by which IPV impacts ART adherence for WLWH, including heightened stress leading to forgetfulness, leaving the home without their pills, or partners throwing away medications (S. Roberts et al., 2016). Concurringly, findings also show that emotional abuse from an intimate partner is linked to a faster rate of decline in cellular immunity for WLWH (Jewkes et al., 2015).

Having to manage or conceal medication from friends and family, or when out in public (K. J. Roberts & Mann, 2003), also contributes to adherence barriers. Furthermore, psychosocial factors such as low social support networks (Edwards, 2006), and depression (Phillips et al., 2005); and social-structural factors such as trauma and racial discrimination (Bradley et al., 2019; Dale & Safren, 2018), HIV-related stigma (Katz et al., 2013), and challenges maintaining adherence with concurrent substance use disorders (Carter et al., 2018; Powell-Cope et al., 2003) add to the list of barriers for achieving optimal health outcomes for WLWH.

Access to appropriate supports is crucial in maintaining adherence to ART for many WLWH. These supports can include programs, policies and interventions intended to directly or indirectly promote adherence. Cognitive-behavioral interventions, education based programs, directly observed therapy, and active adherence reminders such as via mobile phone messaging are some examples (Chaiyachati et al., 2014). Research reporting on interventions that support adherence for WLWH are limited (Chaiyachati et al., 2014), and often focused on pregnant and postpartum WLWH (Hodgson et al., 2014; Omonaiye et al., 2018). However, systematic reviews and meta-analyses analyzing the effectiveness of interventions aimed at supporting ART adherence for women have shown success in terms of efficacy (Pellowski et al., 2018). For example, interventions that incorporate motivational components (Mcdonnell Holstad et al., 2012), and tailored programs for racialized1 women which speak to racism and trauma (Dale & Safren, 2018) have led to improved ART adherence.

However, gaps remain related to the characteristics and approach to programs designed specifically for women to facilitate adherence to ART, especially programs which focus on addressing the significantly high rates of gender-based violence and trauma among this population as a key barrier to optimal health. Drawing on data from a longitudinal community-based open cohort of WLWH in Metro Vancouver, BC, the objectives of this study were to: 1) describe the different types of support that WLWH report needing for ART adherence; and 2) investigate the social and structural correlates with needing support for ART adherence among WLWH on ART. This analysis describes specific aspects of HIV programs that WLWH themselves identify as being important to supporting medication use, and provides recommendations for the scale-up of existing programs and design of new interventions.

METHODS

Study Population

This analysis draws on 3 years of data from a longitudinal community-based open research cohort (2014-present), known as the Sexual Health and HIV/AIDS: Women’s Longitudinal Needs Assessment (SHAWNA), with cisgender and transgender WLWH aged 14+ who live and/or access HIV services in Metro Vancouver. SHAWNA launched following extensive community-based consultations with WLWH, HIV care providers, and policy experts on research priorities and gaps in services. The project partners with over 20 women’s HIV and community service providers and is guided by a Positive Women’s Advisory Board and Community Stakeholder Advisory Board. WLWH are initially invited to enroll in the cohort through outreach by a team of Peer Research Associates (PRAs), self-referrals, and referrals from HIV care providers, peer navigators, HIV/AIDS organizations and clinical outreach, including close collaboration with the provincial referral centre for WLWH (Oak Tree Clinic, BC Women’s Hospital). The project is committed to meaningful inclusion of WLWH throughout all aspects of the research project, with cis and trans WLWH represented across project staff, advisories, and through co-authorship on manuscripts and co-presentations. This study holds ethical approval through both Providence Health Care/University of British Columbia Research Ethics Board, and BC Women’s Hospital.

Following informed consent, women complete an interviewer-administered main questionnaire by trained community interviewers and a health questionnaire with a sexual heath research nurse, inclusive of HIV monitoring and STI/ HCV testing. SHAWNA interviews are conducted semi-annually and focus on experiences navigating HIV care, community supports, sexual and reproductive health, and treatment outcomes. Participants receive an honorarium of $50CAD at each visit for their time, expertise and travel.

Study Variables and Sample

Variables were either time-fixed (i.e., socio-demographic characteristics such as race and birthplace), or time-updated to reflect occurrences within the past six months at each semi-annual study visit. The sample for this study was restricted to WLWH who reported being on ART at their study visit (278/291 of the total sample). A further two participants were excluded from our sample for not providing a response to the outcome of interest.

Outcome

The primary outcome, reporting needing any supports for ART adherence, was time-updated and drew on the following question: “What supports would you need or would help you take ARTs today?”. Types of support were as follows: interpersonal supports (‘peer support’, ‘someone to come with me to appointments’, ‘schedule/delivery/reminders’, ‘trauma/ counselling support’, ‘parenting/child care support’, and ‘support for additional personal and interpersonal barriers’), structural/community supports (‘improved access to food’, ‘addictions support, ‘improved housing’, ‘transportation support’ and ‘financial support’), and clinical supports (‘regular doctor/clinical care’, ‘improvement/change in health care provider’, ‘medication issues’).Responses were then categorized by ‘any supports’, vs. ‘no additional support needed’.

Explanatory Variables

The following socio-demographic variables were time-fixed and measured at baseline: race (Indigenous, other racialized persons, vs. white), and im/migration status (im/migrant vs. born in Canada). Other socio-demographic variables that were time-updated included age (years), years since HIV diagnosis, sexual orientation (identifying as a member of the sexual minority community, including as lesbian, gay, bisexual, queer, asexual and/or two-spirit, vs. straight), gender identity (identifying as a member of the gender minority community, including transgender, intersex, genderqueer, and/or two spirit vs. cisgender). For time-updated Psychosocial variables participants were asked about lifetime diagnosis, support or treatment for any mental health conditions including depression or PTSD. Experiences of suicide ideation or attempt were also captured. Interpersonal, social and structural factors were measured in the last six months and time-updated. Drawing on the definition of IPV as defined by the World Health Organization (World Health Organization, 2013) to create a screening scale for IPV, we created a combined variable to capture all experiences of gender based violence in the last six months (i.e., verbal, physical or sexual violence) by any perpetrator (i.e., intimate partner, sex work client, or other) vs. no experiences. The combined variable, used successfully in a number of recently published studies by our group (Barreto et al., 2019; P. K. Duff et al., 2018; Erickson, Pick, Ranville, Martin, et al., 2020), combined measures of: (a) physical or sexual violence by clients in the last six months (e.g., any of ‘Abducted/kidnapped’, ‘Attempted sexual assault’, ‘Raped’, ‘Strangled’, ‘Physically assaulted/beaten’, ‘Locked/trapped in a car’, ‘Thrown out of moving car’, ‘Assaulted with weapon’, ‘Drugged’, ‘Trapped in room/ hotel/ housing’); (b) physical or sexual violence by intimate partners, measured by the IPV screening scale (any options under the sub-scales of ‘Moderate Physical IPV’, ‘Severe Physical IPV’, ‘Sexual IPV’); and (c) any physical or sexual violence by any other perpetrator.” Additional time updated variables included: illicit drug use (any use of injection or non-injection drugs in the last six months, excluding cannabis and alcohol); sex work (i.e., exchanged sex for money/goods/services); incarceration (held overnight or longer at jail or prison); and homelessness (i.e., sleeping on the street for one night or longer). Being removed from biological parents as a child was also captured.

Analysis

Descriptive statistics were calculated for baseline variables and were stratified by those who reported needing support for ART adherence vs. those who did not. Differences were assessed using the Mann-Whitney test for continuous variables and Pearson’s chi-square test (or Fisher’s exact test for small cell counts) for categorical variables. Bivariate and multivariable logistic regression with generalized estimating equations (GEE) were conducted using an exchangeable correlation structure to examine correlates of the outcome and included information from each participant’s baseline and follow-up questionnaires. Variables significantly associated with needing support for ART adherence in bivariate analyses at the p<0.10 level were subsequently considered for inclusion in a multivariable GEE model. Manual backward stepwise selection was used to determine the most parsimonious and best fitting model, as indicated by the lowest quasi-likelihood under the independence model criterion. Bivariate odds ratios (OR) and multivariable odds ratios (adjusted odds ratios, AOR) and 95% confidence intervals [95%CI] are reported. All p-values are two-sided, and all statistical analyses were performed using SAS software version 9.4 (SAS Institute, Cary, NC, USA).

RESULTS

Between 2014 and 2017, 291 cis and trans WLWH were enrolled in SHAWNA. Of these 291 participants a total of 276 WLWH were eligible for and included in this analysis. The 276 participants contributed 813 observations over the 3-year follow up. The median number of study visits completed by participants was 3 (Interquartile Range (IQR): 1–4).

At baseline, 26% of participants (n=71) reported needing support for ART adherence and over half of the study participants (51%, n=142) reported needing supports for ART adherence at some point throughout the study period (i.e., at baseline or any subsequent semi-annual follow up visit). Participants indicated a range of interpersonal, structural, community and clinical supports needed for ART adherence. Types of supports needed for adherence are shown in Table I. The top five most commonly reported needed supports included: improved access to food (23%), addictions support (20%), improved housing (20%), peer support (18%) and transportation support (18%).

TABLE I.

Types of support needed to take ART at any study visit for women living with HIV (n=276)

Types of Support Needed Yes (%)
Interpersonal Supports
 Peer Support 50 (18.1)
 Someone to come with me to appointments 40 (14.5)
 Schedule/Delivery/Reminders 34 (12.3)
 Trauma/Counselling Support 33 (12.0)
 Support for additional personal and interpersonal barriers 11 (4.0)
 Child Care 6 (2.2)
Structural/Community Supports
 Improved Access to Food 64 (23.2)
 Addictions support 55 (19.9)
 Improved Housing 55 (19.9)
 Transportation support 51 (18.5)
 Financial Support 41 (14.9)
Clinical Supports
 Regular Doctor/Clinical Care 6 (2.2)
 Improvement/change in health care provider 6 (2.2)
 Medication issues 2 (0.7)
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Baseline characteristics of study participants, stratified by the outcome, reporting needing support for ART adherence, are presented in Table II. Amongst 276 WLWH, the median age at baseline was 45 years (IQR: 38–52). Overall, 55% were Indigenous (i.e., First Nations, Inuit, Métis), 10% were otherwise racialized with the majority being Black, and 35% were white. This represents an overrepresentation of Indigenous women in our study relative to the general population, where Indigenous women comprise only 4% of the overall population of Canadian women (Arriagada, 2016). Overall, 10% of participants identified as a gender minority, and 37% identified as a sexual minority. Lifetime diagnosis, treatment or supports for depression was reported by 52% of participants, while 21% of participants reported lifetime diagnosis, treatment or supports for PTSD. Gender-based violence was extremely high, with 95% and 14% of participants reporting lifetime and recent physical and/or sexual violence by any perpetrator, respectively. A large proportion of participants in our sample (37%) had been removed from their biological parents as children. Of note, Indigenous children in Canada are extremely over-represented among children removed from parents and in government care (Indigenous Services Canada, 2020; Ontario Human Rights Commission, 2018; Spencer & Sinclair, 2017). Over half of participants (64%) reported recent injection or non-injection drug use, and 32% reported recent sex work. Recent homelessness was experienced by 17% of participants, and 5% reported recent incarceration.

TABLE II.

Baseline characteristics of women living with HIV stratified by reporting needing support for ART adherence (n=276)

Characteristic Total (%)
(n = 276)		 ART support needed p - value
Yes (%)
(n = 71)		 No (%)
(n = 205)
Individual characteristics
 Age, years (median, IQR) 45 (38–52) 44 (37–49) 45 (39–52) 0.287
 Identify as a sexual minority 101 (36.6) 31 (43.7) 70 (34.2) 0.151
 Identify as trans/gender minority 28 (10.1) 9 (12.7) 19 (9.3) 0.412
 Race
  Indigenous 153 (55.4) 46 (64.8) 107 (52.2)
  Otherwise racialized persons 27 (9.8) 8 (11.3) 19 (9.3)
  White 96 (34.8) 17 (23.9) 79 (38.5) 0.084
 Im/migrant to Canada 26 (9.4) 7 (9.9) 19 (9.3) 0.883
 Time since HIV diagnosis, years (median, IQR) 14 (8–20) 14 (7–20) 14 (8–20) 0.674
 Diagnosed with/treated for/ received support for depression† 144 (52.2) 42 (59.2) 102 (49.8) 0.172
 Diagnosed with/treated for/ received support for PTSD† 59 (21.4) 20 (28.2) 39 (19.0) 0.105
 Suicide ideation or attempt† 160 (58.0) 49 (69.0) 111 (54.2) 0.032
 Recent suicide ideation or attempt* 30 (10.9) 10 (14.1) 20 (9.8) 0.313
Interpersonal/Social/Structural factors
 Gender-based physical violence* 36 (13.0) 14 (19.7) 22 (10.7) 0.061
 Gender-based sexual violence* 7 (2.5) 3 (4.2) 4 (2.0) 0.383
 Injection or non-injection drug use* 177 (64.1) 56 (78.9) 121 (59.0) 0.004
 Exchanged sex for money/goods/services* 87 (31.5) 27 (38.0) 60 (29.3) 0.179
 Incarcerated* 14 (5.1) 7 (9.9) 7 (3.4) 0.053
 Homeless* 46 (16.7) 19 (26.8) 27 (13.2) 0.008
 Removed from biological parents 101 (36.6) 28 (39.4) 73 (35.6) 0.644
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*

Last six months

†

Lifetime

All data refer to n (%) of participants unless otherwise specified

Table III presents results from bivariate and multivariable logistic regression with GEE. In bivariate analysis, the following factors were statistically significantly associated with needing support for ART adherence (on a p<0.05-level): being Indigenous (OR:1.85, 95% CI:1.19–2.85) or other racialized (OR:1:97, 95% CI:0.92–4.24) versus white; recent gender-based physical violence (OR:1.86, 95% CI:1.28–2.70); lifetime diagnosis, treatment or support for PTSD (OR:1.78, 95% CI:1.15–2.75); recent illicit drug use (OR:2.24, 95% CI:1.53–3.28); recent sex work (OR:1.63, 95% CI:1.13–2.37); recent incarceration (OR:2.29, 95% 1.00–5.23); recent homelessness (OR:1.86, 95% CI:1.18–2.94). In multivariable analysis (Table III), women who were Indigenous (AOR: 1.70, 95% CI:1.07–2.72), or other racialized (AOR:2.36, 95% CI:1.09–5.12), had greater odds of reporting needing support for ART adherence compared to non-racialized women. Recent experiences with gender-based physical violence (AOR: 1.54, 95% CI:1.03–2.31), lifetime diagnoses, treatment or support for PTSD (AOR: 1.97, 95% CI:1.22–3.18), and recent illicit drug use (AOR: 2.15, 95% CI:1.43–3.22) were also associated with increased odds of needing support for ART adherence.

TABLE III.

Unadjusted and adjusted odds ratios with 95% confidence intervals for factors associated with reporting needing support for ART adherence for women living with HIV, 2014–2017 (n=276)

Characteristic Unadjusted Odds Ratio (OR) (95% CI) Unadjusted OR p-value Adjusted OR (95% CI) Adjusted OR p-value
Individual characteristics
 Age, per year older 0.98 (0.96–1.00) 0.074
 Identify as a sexual minority 1.24 (0.85–1.79) 0.267
 Identify as a trans/gender minority 0.97 (0.52–1.81) 0.926
 Race
  Indigenous 1.85 (1.19–2.85) 0.006 1.70 (1.07–2.72) 0.026
  Otherwise racialized persons 1.97 (0.92–4.24) 0.082 2.36 (1.09–5.12) 0.029
  White Reference
 Im/migrant to Canada 1.02 (0.52–2.01) 0.962
 Time since HIV diagnosis, per year 0.99 (0.96–1.01) 0.352
 Diagnosed with/treated for/received support for depression† 1.59 (1.09–2.32) 0.015
 Diagnosed with/treated for/ received support for PTSD† 1.78 (1.15–2.75) 0.010 1.97 (1.22–3.18) 0.005
 Suicide ideation or attempt* 2.27 (1.35–3.83) 0.002
Interpersonal/Social factors
 Gender-based physical violence* 1.86 (1.28–2.70) 0.001 1.54 (1.03–2.31) 0.037
 Gender-based sexual violence* 0.77 (0.31–1.93) 0.580
 Injection or non-injection drug use* 2.24 (1.53–3.28) <0.001 2.15 (1.43–3.22) <0.001
 Exchanged sex for money/goods/services* 1.63 (1.13–2.37) 0.010
 Incarcerated* 2.29 (1.00–5.23) 0.049 2.31 (0.92–5.76) 0.074
 Homeless* 1.86 (1.18–2.94) 0.008
 Removed from biological parents† 1.41 (0.97–2.07) 0.075
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*

Time-updated measure referring to the last six months

†

Time-updated lifetime measure

DISCUSSION

Among women in our study, access to supports for ART adherence remains sub-optimal, with over half of women on ART reporting needing support for adherence at least once in the 3-year study period, and needing this support in over one quarter of all study visits. Study results elucidate important examples of programming components that should be incorporated into new or existing services, or supported, scaled up and expanded – if already in place – in order to reach the most marginalized WLWH and bolster ART adherence.

The vast majority of WLWH in our study (95%) had experienced lifetime physical or sexual violence. In our study, WLWH who experienced recent physical gender-based violence, and WLWH who had been diagnosed, treated or supported for PTSD throughout their lives were at heighted odds of reporting a need for ART adherence support. Moreover, 12% of study participants reported a need for trauma support and counselling to support their use of ART. While mental health conditions including depression and anxiety have been identified as barriers to optimal ART adherence for PLWH (Huynh et al., 2013; Sumari-de Boer et al., 2012), there is also an emerging body of research surrounding how violence and trauma can impact ART adherence (Hatcher et al., 2015; Siemieniuk et al., 2013).

Recognition of the synergistic syndemics among marginalized women, including HIV and violence, along with drug use for some WLWH (Meyer et al., 2011), and growing understanding of historical and on-going trauma and the wide-ranging effects of trauma on health and health access, there has been an increased call to extend trauma-informed care for WLWH (Brezing et al., 2015). Incorporating trauma-informed principles into health programs and services has been gaining increasing attention, including through the US Department of Health and Human Services Substance Abuse and Mental Health Services Administration (SAMHSA) offices (SAMHSA’s Trauma and Justice Strategic Initiative, 2014). SAMHSA’s trauma-informed care principles include safety; trustworthiness and transparency; peer support; collaboration and mutuality; empowerment, voice and choice; and cultural, historical and gender issues. Trauma-informed care principles employ a framework that aims to realize and understand the impact of trauma, recognize signs and symptoms, and respond by integrating knowledge around trauma into policies and practice as a way to actively resist re-traumatization (SAMHSA’s Trauma and Justice Strategic Initiative, 2014). Employing trauma-informed care principles for marginalized women, including women with addictions through drug treatment programs, have been found to be successful at reducing mental health and trauma symptoms, as well as reducing substance use (Covington et al., 2008).

Though few trauma-informed HIV care interventions exist for WLWH specifically, there is some evidence to suggest the effectiveness of these interventions to improve HIV outcomes for PLWH (Sales et al., 2016; Sikkema et al., 2018). In our Metro Vancouver setting, higher scores on a scale measuring trauma-informed principles within HIV care and practice was associated with a number of positive outcomes for WLWH, including heightened quality of life, health access and ART adherence (K. Deering et al., 2019). Moreover, an HIV care program in place in Metro Vancouver that has developed a women-centred, trauma-informed care approach for WLWH (Oak Tree Clinic, BC Women’s Hospital and Health Centre) has shown benefits in terms of higher levels of viral load suppression (86% in unpublished Oak Tree Clinic data, June 2016, vs provincial estimates for women of 53% in BC) (Kestler et al., 2018). While these results are promising, among broader HIV care interventions that only include women, components that are tailored to meet women’s needs are rare (Pellowski et al., 2018).

In our study, Indigenous, and other racialized women were significantly more likely to report needing ART supports compared to non-racialized women. The overrepresentation of Indigenous, Black, and other racialized persons among people living with HIV in Canada (Loutfy et al., 2017; Public Health Agency of Canada, 2014) relative to their proportions of the total population, is rooted in structural and institutionalized racism and discrimination. Indigenous women face heightened violence compared to the rest of the Canadian population (Brennan, 2011; Daoud et al., 2013) and continue to experience the ongoing detrimental impacts of settler colonialism (Benoit et al., 2016; Kubik et al., 2009), including through intergenerational trauma resulting from colonial practices including residential schools (Gone, 2013; Kirmayer et al., 2000). Research has shown that Black and Indigenous women in Canada face multiple intersecting stigmas which affect their HIV health access and outcomes (Logie et al., 2013; Mccall et al., 2009), with experiences of racial discrimination associated with higher odds of attrition from the HIV continuum of care (Kerkerian et al., 2018). These findings highlight a crucial need to strengthen current HIV programming and intervention efforts to include culturally safe care for Indigenous WLWH (Douglas et al., 2014), which can be strengthened through appropriate training within health care settings (Khanna et al., 2009). Initiatives focused on improving health outcomes for Indigenous women specifically must be Indigenous-led, prioritize Indigenous voices, values, and concepts, and incorporate considerations of cultural practices throughout (Greenwood et al., 2017; Klingspohn, 2018). For Black WLWH in Canada, as well as other racialized women, who experience heightened and intersectional racial and gender discrimination, along with HIV-related stigma (Logie et al., 2013), culturally-responsive and tailored programs are needed to enhance support for these populations. These programs should be led, developed, evaluated and supported by members of the affected community.

Peer support was also reported as necessary for ART adherence in our study by 18% of participants. Though limited research evaluates peer-based models of care among PLWH, some studies have suggested that peer-based interventions/programs can improve linkage and retention in HIV care (Genberg et al., 2016), and specifically promote ART adherence for marginalized groups of WLWH including sex workers (K. N. Deering et al., 2009) and racialized women (Okoro & Odedina, 2016). At the same time, cultural stigma surrounding HIV can be a barrier to some women to seek out or feel comfortable accessing peer-based services or programs. Such complexities highlight the need for and importance of having choices in services to support ART adherence that are designed and led by women according to cultural and ethnic backgrounds. Trauma-informed care and practice should be tailored according to gender issues as well as historical and cultural issues (SAMHSA’s Trauma and Justice Strategic Initiative, 2014).

In addition the impacts of gender-based violence and racial discrimination as barriers to optimal health outcomes, structural and community-level supports such as improved access to housing, food, and transportation were shown to be important program components that could enhance ART use and adherence for WLWH in our study. Other cohorts of WLWH within Canadian settings have highlighted unstable housing and food insecurity as correlates associated with attrition across the HIV continuum (Kerkerian et al., 2018). Interventions aimed at improving access to housing for marginalized women, specifically safe and supportive housing for WLWH (Ghose et al., 2019) and their children (Quinn et al., 2015) must be prioritized. Integration of programs that address food insecurity also remain critical to enhancing HIV health outcomes for WLWH (Spinelli et al., 2017). Though nutritional supports combined with education are effective for PLWH (Martinez et al., 2014), WLWH are more likely to experience food insecurity compared to men, and as such, programs addressing food insecurity must be tailored to meet the specific needs of women (Boneya et al., 2019), and further research is warranted in this field. Furthermore, transportation barriers can prevent access to care or medications (Cornelius et al., 2017), suggesting the importance of programs that support home-based care, medication delivery (Weidle et al., 2006) or provide transportation stipends (Siedner et al., 2015).

In our study, illicit drug use was also associated with heightened odds of needing support for ART adherence, and 20% of participants indicated a need for addictions support to increase ART use. The role of illicit substance use has been cited as a strong predictor for attrition from the HIV continuum of care (Kerkerian et al., 2018), and as a significant barrier to ART adherence for WLWH (Kerkerian et al., 2018; Zhang et al., 2018). Our findings add to existing calls for improved substance use supports for PLWH and strengthened interventions and programs tailored for and with marginalized women who use drugs in order to enhance ART adherence (Azar et al., 2015; Zhang et al., 2018). Although access to opioid agonist therapy, for example, is associated with increased ART adherence (Reddon et al., 2014), women continue to face barriers to accessing broad substance use services – such as overdose preventions sites and detox/rehab services – which can be gendered and racialized spaces, discouraging access (Boyd et al., 2018). Increased strategies are required to ensure accessibility of these spaces for all women and gender diverse populations as a means to support ART use and adherence.

Finally, while the statistical association between recent incarceration and needing supports for ART adherence was not significant at the p<0.05-level (p=0.07), the direction of association is in strong correspondence with previous findings and warrants special consideration, especially considering the high prevalence of incarceration histories among WLWH in our cohort (Erickson, Pick, Ranville, Brashcel, et al., 2020) and elsewhere (Dolan et al., 2007; Poulin et al., 2007). Although research from high-income settings argue that correctional facilities can create a space to engage in the delivery of ART for marginalized populations (Avery et al., 2013), a recent systematic review of the gendered impact of incarceration on HIV outcomes demonstrates that post-incarceration, WLWH are less likely to be engaged in care, less likely to adhere to ART, and less likely to achieve viral suppression compared to men (Erickson et al., 2019). Across Canada, recent incarceration is associated with higher odds of non-adherence and not achieving viral suppression for WLWH (Kerkerian et al., 2018), including findings from our cohort which indicate recent incarceration as a primary barrier to viral suppression amongst WLWH in Metro Vancouver (Erickson, Pick, Ranville, Brashcel, et al., 2020). Upon release from correctional facilities women are faced with limited supports for accessing healthcare, housing, addictions treatments and employment opportunities (Martin et al., 2012). Comprehensive plans which incorporate trauma-informed care (Harner & Burgess, 2011) are critical for WLWH being released from correctional facilities.

Limitations

There are several limitations as well as strengths to our study. Although we have a relatively small sample, the longitudinal study design provided repeated measures for each participant, increasing power. Our study sample may not be representative of all WLWH in our setting or elsewhere, however our sampling approach and decade-long community and clinical connections allow us to recruit and retain a sample of WLWH that is as representative as possible, including marginalized women who are often difficult to reach (i.e., women who use drugs; sex workers). Our study was longitudinal, but our associations cannot be considered causal because of our statistical approach that utilized repeated measures (bivariate and multivariable regression with GEE). Still, our explanatory variables were carefully chosen to have a time reference that was prior to (e.g., ‘in the last six months’ or ‘lifetime’) and/or included that of our outcome (measured ‘currently’) and so it is unlikely that the directions of association are opposite to what we have posited. As the study included self-report data, it may be subject to recall and social desirability biases (Rosenman et al., 2001). However, our trained interviewers have extensive experience working with WLWH, including creating safe environments to disclose sensitive information and we are confident that our data is as accurate as possible.

Conclusions

WLWH who experience gender-based violence and have a history of trauma are more likely to report needing added supports to enhance ART adherence. As such this research suggests a critical need for trauma- and violence-informed practice and services to strengthen HIV care and overall outcomes for this population. WLWH identified structural and community supports (e.g., better access to food, housing, transportation support and addictions support) and peer support as being important factors needed to support ART adherence. As part of being trauma-and violence-informed, HIV care and practice should be culturally safe and culturally responsive. All services should be developed by, with and for WLWH and tailored according to gender, as well as historical and cultural issues.

Acknowledgments

We thank all those who contributed their time and expertise to this project, particularly participants, peer research associates, SHAWNA community advisory board members and partner agencies, and the SHAWNA and affiliate team, including, Tina Beaulieu, Barb Borden, Shannon Bundock, Lulu Gurney, Zoe Hassall, Amber Kelsall, Emma Kuntz, Lois Luo, Lauren McCraw, Jennifer McDermid, Jennifer Morris, Sarah Moreheart, Desire Tibashoboka, Akanée Yamaki, and Brittney Udall. We also thank Megan Bobetsis, Arveen Kaur, Jessica Maiorino, Rachel Taylor, and Peter Vann for their research and administrative support.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work is supported through a Canadian Institutes of Health Research Operating Grant (MOP-133617).

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

1

The term racialized encompasses all people that are non-white. It is used to emphasize how race is an ascribed identity that impacts “economic, political and social life. This term is sometimes preferred over ‘race’ because it acknowledges the process of racialization” (Canadian Institute for Health Information, 2020).

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