Abstract
Objective:
To: (1) describe the prevalence of key reproductive health outcomes (e.g., pregnancy, unintended pregnancy; abortion); and (2) examine social-structural correlates, including HIV stigma, of having key sexual and reproductive health (SRH) priorities met by participants’ primary HIV provider, among women living with HIV.
Methods:
Data were drawn from a longitudinal community-based open cohort (SHAWNA) of women living with HIV. The associations between social-structural factors and two outcomes representing having SRH priorities met by HIV providers (‘being comfortable discussing sexual health [SH] and/or getting a Papanicolaou test’ and ‘being comfortable discussing reproductive health [RH] and/or pregnancy needs’) were analyzed using bivariate and multivariable logistic regression models with generalized estimating equations for repeated measures over time. Adjusted odds ratios (AOR) and 95% confidence intervals [95% CIs] are reported.
Results:
Of 314 participants, 77.1% reported having SH priorities met while 64.7% reported having RH priorities met by their primary HIV provider at baseline. In multivariable analysis, having SH priorities met was inversely associated with: sexual minority identity (AOR: 0.59, 95% CI: 0.37–0.94), gender minority identity (AOR: 0.52, 95% CI: 0.29–0.95) and recent verbal or physical violence related to HIV status (AOR: 0.55, 95% CI: 0.31–0.97) and positively associated with recently accessing women-centred services (Oak Tree Clinic) (AOR: 4.25, 95% CI: 2.20–8.23). Having RH priorities met was inversely associated with: sexual minority identity (AOR: 0.56, 95% CI: 0.40–0.79), gender minority identity (AOR: 0.45, 95% CI: 0.25–0.81) and being born in Canada (AOR: 0.29, 95% CI: 0.15–0.56) and positively associated with recently accessing women-centred services (AOR: 1.81, 95% CI: 1.29–2.53) and a history of pregnancy (AOR: 2.25, 95% CI: 1.47–3.44).
Conclusion:
Our findings suggest that there remain unmet priorities for safe SRH care and practice among women living with HIV, and in particular, for women living with HIV with sexual and/or gender minority identity and those who experience enacted HIV stigma. HIV providers should create safe, non-judgmental environments to facilitate discussions on SRH. These environments should be affirming of all sexual orientations and gender identities, culturally safe, culturally humble and use trauma-informed approaches.
Keywords: Women living with HIV, sexual and reproductive health, HIV stigma, sexual and gender minorities
INTRODUCTION
Access to sexual and reproductive health (SRH) care and practice is a critical human right and is especially important for people with complex health needs who have historically faced discrimination and stigma within health care, including cis and trans women living with HIV. As life expectancy and quality of life improve with advancements in antiretroviral therapy, cis women living with HIV are increasingly considering their fertility options and engaging in sexual health discussions globally.[1,2] In the United States, rates of live births among women living with HIV have seen a consistent increase while abortion rates remain stable.[3] A Canadian study found that women living with HIV report fertility desires at a prevalence similar to those of the overall population.[4] Accordingly, SRH services such as comprehensive reproductive health counselling are increasingly being integrated into the primary care services offered by many HIV care providers.[5]
Even with this paradigm shift, there is still evidence that women living with HIV still have unmet needs in SRH services.[6] In Canada, upwards of 61% of all pregnancies among women living with HIV are unintended compared to the national average of 40%.[7,8] In the United States, greater than 85% of women living with HIV reported having at least one unplanned pregnancy and 32.5% reported engaging in condomless sex with a male partner of negative or unknown HIV status.[9] Unintended or unplanned pregnancies may represent a gap in access to safe SRH services including contraception. Evidence suggests that women living with HIV may have access to a narrow range of contraceptive methods, primarily male condoms and tubal ligation, and a recent study showed that only 18% used dual contraceptive protection, as defined by the World Health Organization.[10]
HIV providers can be an important point of connection to fulfil sexual and reproductive health priorities with women living with HIV and support positive sexual and reproductive health and well-being, as well as access to contraception, Papanicolaou and STI testing. The results of one American study that found that only 25% of women living with HIV have had discussions regarding childbearing goals with their HIV provider despite the fact that 65% conveyed interest in having a biological child.[11] Provider-level barriers (e.g., limited discussion on contraception types, stigma) have been identified as important factors shaping to access to SRH services in qualitative analysis, but limited research is available quantitatively.[10,12] In a review of primary care access of women living with HIV, positive provider-patient interactions were a facilitator to comprehensive primary care.[13] Another study looked at the receipt of women-centred HIV care, which encompasses positive provider relationships, and found that it was associated with higher health-related quality of life.[14] These results suggest there is a continued need for research to understand how services and programs can better meet the needs of women living with HIV in SRH care and practice to understand and improve these outcomes, including within HIV practice.
While there are limited studies that assess provider-level factors as SRH priorities, there may be many reasons for provider SRH priorities of women living with HIV to be unmet. Intimate partner-level factors (e.g., partner violence; limited support or involvement by partners in contraception and family planning) and broader social-structural determinants of health (homelessness, drug use, incarceration) can play important roles in shaping access to sexual and reproductive health services access, including contraceptives and testing for STIs.[15–18] Stigma is also a well-documented barrier to accessing medical care, especially among people living with HIV.[19,20] The current literature on the effects of stigma in the context of SRH care and practice is limited. Stigma types include enacted stigma (discrimination or actions resulting from stigma), social stigma (awareness that stigma beliefs are held by a large faction of society), internalized stigma or self-stigma (internalization of the negative beliefs) and anticipated stigma (fear that stigma will be experienced). Stigma can have a significant effect on engagement in care. For instance, one American study found that people living with HIV with high levels of internalized HIV stigma were over four times more likely to report poor access to medical care than those without.[21] HIV stigma may be exacerbated by other inequities such as gender, race, class and sexual orientation resulting in a synergistic, intersectional experience of stigma.[22].
Racism against Indigenous women in Canada and globally and otherwise racialized women has been shown to be a broad barrier to access to health services, including embedded within provider-patient interactions.[23–25] SRH research with sexual and gender minority women living with HIV is marginalized and often overlooked. The majority of studies conducted with women living with HIV includes the experiences of cis women only, collapsing trans women living with HIV’s experiences with those of cis women.[7] Although trans women have 49 times the odds of acquiring HIV compared to other groups,[26] there is a disproportionately low amount of research and programs tailored with and for trans women. Trans women living with HIV have been found to have reduced adherence to antiretroviral therapy and fewer positive interactions with healthcare providers when compared to non-trans people.[27] Sexual and gender minority women living with HIV are at higher risk for having their SRH needs overlooked by health providers and health systems.
This study therefore sought to address research gaps in access to SRH services in HIV care among cis and trans women living with HIV in a Metro Vancouver setting through the following objectives: (1) describe the prevalence of key reproductive health outcomes (e.g., pregnancy, unintended pregnancy; abortion); and (2) examine social-structural correlates, including HIV stigma, of having key SRH priorities met by participants’ primary HIV provider.
METHODS
Study design and sampling
We drew on data (2014–2019) from the SHAWNA Project, a longitudinal, community-based study with women living with HIV, that addresses broad social and structural factors related to women’s health, well-being and health services access. SHAWNA is guided by a number of women’s HIV and community service providers and a Community Stakeholder Advisory Board, as well as a Positive Women’s Advisory Board of women living with HIV that meets every 2–3 months. SHAWNA was developed based on over 6 months of community consultations with women living with HIV, HIV care providers, and policy experts, with the main objective to longitudinally assess the needs and priorities identified by women living with HIV in Metro Vancouver, British Columbia (BC).
Eligibility for SHAWNA includes gender identity as a woman (cis or trans), being aged 14 or older and living and/or accessing HIV and AIDS services in Metro Vancouver. Various recruitment methods based on community-based research principles were used to recruit participants, including: self-referrals and referrals from HIV care providers, peer researchers, HIV and AIDS service organizations, and clinical outreach. Participants who have provided informed consent completed a semi-annual peer or community interviewer administered questionnaire at baseline and 6-month follow-ups. Participants completed face-to-face interviews primarily in the Centre for Gender and Sexual Health Equity (CGSHE)/University of British Columbia (UBC) Research Hub (SHAWNA’s project office base), as well as in a clinical or community setting, or in another setting that they felt comfortable in. Limited interviews were conducted by phone. The questionnaire covers social-demographics and structural vulnerability (e.g. experiences of violence, food insecurity, sex work, and drug use) as well as various aspects of SRH access and outcomes, and questions related to HIV status.
Participants also receive voluntary viral load/CD4 measurements and serology for sexually transmitted infections/ Hepatitis C Virus serology by one of the project’s sexual health nurses. Participants are offered treatment by project nurses onsite at the CGSHE/UBC Research Hub, if needed, for symptomatic sexually transmitted infections (STIs) and Papanicolaou testing, regardless of enrolment in the study. Following the interview, interviewer/outreach workers and clinical staff connect participants to health and social services (e.g., HIV treatment and care; mental health services; anti-violence organizations; housing) through a supportive, participant-led process. At each visit, participants receive CA$50 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. At each visit, participants receive CA$50 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.
Primary outcomes
The primary outcome variables, representing having key SRH priorities met with one’s primary HIV provider, included: (1) having HIV providers address SH priorities, through responding ‘Agree’ to ‘I feel comfortable discussing my reproductive or pregnancy needs at the clinic’; and (2) having HIV providers address RH priorities, through responding ‘Agree’ to ‘I feel comfortable getting a Papanicolaou smear or discussing my sexual health at the clinic’). The questions used to develop the outcomes represented priorities identified by women in our study with respect to sexual and reproductive health. These questions were designed in collaboration with staff, clinical collaborators and peer research associates and piloted with participants.
Explanatory variables
Variables derived from the SHAWNA questionnaire are either time-fixed (i.e., race, country of birthplace) or time-updated to reflect ‘recent’ occurrences within the past six months at each semi-annual study visit. Individual social-demographic characteristics included: age at study visit, race (Indigenous and other racialized persons of colour vs White), birthplace (born in Canada vs. born outside of Canada), education (graduated high school vs. did not complete high school), sexual identity (sexual orientation minority at any study visit [inclusive of lesbian, gay, bisexual, asexual, Two Spirit, queer, other] vs. heterosexual at all study visits); and gender identity (gender minority at any study visit [inclusive of trans [transgender, transsexual, other transfeminine identity], gender diverse [non-binary, Two Spirit] vs cisgender at all visits). Participants were given the option of providing more than one response to questions on sexual orientation, gender identity and racial identity. Given relatively small sample size of participants who reported being trans women, Two Spirit women and gender diverse women (see Results section), and based on evidence that minority stress processes affect all members of gender minority communities relative to cisgender people,[28] for the purposes of analyses, we combined participants with these responses to gender identity into one group.
Interpersonal and social-structural factors included recent: homelessness, exchanged sex for money/goods/services, incarceration and drug use, including use of non-injection opioids, non-injection stimulants, injection opioids and injection stimulants. We also included a variable measuring if participants recently accessed Vancouver’s Oak Tree clinic in the last six months. Oak Tree clinic is the only clinic in Metro Vancouver that provides specialized interprofessional HIV care with women throughout their lifetimes, and takes a women-centred, trauma-informed approach [29]. This variable was defined through a survey item if participants had accessed Oak Tree Clinic at BC Women’s Hospital within the last six months. The categories included “accessing Oak Tree Clinic” versus “did not access Oak Tree Clinic”, with the latter category included participants who accessed other HIV clinics in Metro Vancouver (e.g., community-based health centres, independent clinics) or who did not access any HIV clinic, in the last six months. Ever experiencing difficulty having a satisfying sexual relationship due to HIV (HIV had physical/emotional effects that made/makes it difficult to have a satisfying sexual relationship) and currently feeling that HIV had negative emotional/psychological effects (responding that HIV affected emotional/psychological well-being) were also captured. Recent (last six months) HIV stigma was captured among a subsample of participants, as this question was added in 2015. As in a previous study [30], recent HIV stigma was measured using nine questions from Wright’s shortened 10-item version [31] of Berger’s HIV-stigma scale [32]. All stigma measures were considered continuous. We used an overall measure of HIV stigma as well as four sub-scales of HIV stigma (perceived; anticipated; enacted; and internalized HIV stigma). We also included a separate measure of enacted HIV stigma, experiencing recent (last six months) verbal or physical violence that was perceived to be related to participants’ HIV status and having had one’s HIV status disclosed involuntarily in their lifetimes (“being outed” for HIV status). Lastly, participants were asked about reproductive health experiences including proportion who had been pregnant, had live births, had pregnancies that were unplanned, and had abortions. Future fertility desires were also captured by asking participants if they were planning/hoping to have any/any more children in future (trying to become pregnant, currently pregnant, or in future vs. no or undecided).
Statistical analysis
Descriptive statistics were calculated, including frequencies and proportions for categorical variables and measures of central tendencies [i.e., mean, medians and interquartile ranges (IQR)] for continuous data. These were stratified by the outcomes of interest and differences were assessed using Pearson’s chi-square test (or Fisher’s exact test for small cell counts) for categorical variables and the Wilcoxon rank-sum test for continuous variables. Bivariate and multivariable logistic regression with generalized estimating equations (GEE) and an exchangeable correlation matrix were used to examine associations between individual, interpersonal and social-structural factors and the two outcomes, being comfortable discussing sexual health and reproductive health. Variables with p-value < 0.10 in bivariate analyses and few priori hypothesized explanatory variables (age, perceived HIV stigma) were considered for inclusion in the multivariable models. Beginning with the full models, we used backward stepwise model selection to identify the best fitting multivariable models, as indicated by the lowest quasi-likelihood under the independence model criterion.[33,34] All reported 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
Sample characteristics
The full sample of participants with a main HIV care provider (n=314) included 1392 observations from September 2014-February 2019. The sub-sample for the HIV stigma scale included 1061 observations on 268 participants from September 2015-February 2019. Of the 314 cis and trans women living with HIV with a main HIV provider in this study, 77.1% (n=242) had their SH needs met while 64.7% (n=203) had their RH needs met with their primary HIV provider at baseline. Table 1 provides baseline descriptive characteristics of the sample, stratified by each of the two outcomes. The median age of participants was 45 years (mean=44.6, IQR: 38–52). A total of 33.4% (n=105) of participants identified as members of sexual minority communities and 8.9% (n=28) identified as members of gender minority communities. The sample included 55.7% (n=175) Indigenous, 34.7% (n=109) White and 9.6% (n=30) otherwise racialized participants. The majority (90.1%, n=283) were born in Canada and 49.7% (n=156) had graduated high school. Of the sample, 36.3% (n=114) of women had accessed the women-centred HIV services at Oak Tree Clinic in the last six months.
Table 1.
Sample characteristics at baseline among a cohort of women living with HIV in Metro Vancouver, Canada
| N=314 | N=242 (missing=9) | N=203 (missing=6) | |||||||
|---|---|---|---|---|---|---|---|---|---|
| Yes | No | Missing (n) | P | Yes | No | Missing (n) | P | ||
| Age (years) | 45 (38–52) | 45 (37–52) | 44 (39–50) | 0 | 0.909 | 43 (37–49) | 48 (42–53) | 0 | <0.001 |
| Sexual minority identity a | 33.4% (105) | 30.6% (74) | 42.9% (27) | 1 | 0.068 | 25.1% (51) | 49.5% (52) | 1 | <0.001 |
| Gender minority identity b | 8.9% (28) | 5.0% (12) | 22.2% (14) | 2 | <0.001 | 4.4% (9) | 17.1% (18) | 2 | <0.001 |
| Race | 0.294 | <0.001 | |||||||
| Born in Canada | 90.1% (283) | 88.8% (215) | 93.7% (59) | 0 | 0.261 | 85.7% (174) | 98.1% (103) | 0 | <0.001 |
| Graduated high school | 49.7% (156) | 50.4% (122) | 46.0% (29) | 0 | 0.536 | 52.2% (106) | 45.7% (48) | 0 | 0.279 |
| Been homeless/living on the street * | 18.2% (57) | 18.2% (44) | 17.5% (11) | 0 | 0.894 | 17.2% (35) | 20.0% (21) | 0 | 0.552 |
| Exchanged sex for money/goods/services * | 30.6% (96) | 27.3% (66) | 44.4% (28) | 1 | 0.009 | 31.5% (64) | 29.5% (31) | 1 | 0.698 |
| In jail overnight or longer * | 6.4% (20) | 6.6% (16) | 6.4% (4) | 3 | 0.922 | 7.9% (16) | 2.9% (3) | 3 | 0.092 |
| Used non-injection opioids * | 12.7% (40) | 14.1% (34) | 7.9% (5) | 2 | 0.189 | 12.8% (26) | 12.4% (13) | 2 | 0.890 |
| Used non-injection stimulants * | 49.4% (155) | 49.6% (120) | 49.2% (31) | 1 | 0.934 | 46.3% (94) | 55.2% (58) | 1 | 0.148 |
| Used injection opioids * | 30.6% (96) | 30.6% (74) | 33.3% (21) | 2 | 0.704 | 32.0% (65) | 28.6% (30) | 2 | 0.499 |
| Used injection stimulants * | 33.8% (106) | 32.6% (79) | 36.5% (23) | 2 | 0.591 | 32.0% (65) | 35.2% (37) | 2 | 0.609 |
| Accessed Oak Tree Clinic * | 36.3% (114) | 40.1% (97) | 20.6% (13) | 0 | 0.004 | 40.4% (82) | 28.6% (30) | 0 | 0.041 |
Last 6 months
Sexual minority includes gay, lesbian, bisexual, Two-Spirit, asexual, queer, or other
Gender minority includes trans, transsexual, Two-Spirit, genderqueer, or other
Indigenous includes First Nations, Métis, and Inuit peoples of Canada
Figure 1 displays the prevalence of multiple key reproductive health measures among women living with HIV in our study at baseline. Of our participants, 83.8% (n=263) had ever been pregnant and 69.8% (n=219) had experienced a live birth. Over half of participants (52.6%, n=165) reported having at least one unplanned pregnancy in their lifetime while 28.7% (n=90) reported having at least one abortion. Of the sample, 19.1% (n=60) had fertility desires for the future.
Figure 1.

Baseline prevalence of key reproductive health measures. RH = reproductive health, SH = sexual health. Pregnancy, live births, unplanned pregnancy and abortions were lifetime measures, as indicated by a *. The SH and RH outcomes as well as future pregnancy intentions were recent measures.
Abbreviations:
RH: reproductive health
SH: sexual health
SHAWNA: Sexual Health and HIV/AIDS: Women’s Longitudinal Needs Assessment
SRH: sexual and reproductive health
Regression analysis
ORs and AORs are presented in Table 2 and 3, respectively for the two main outcomes: (1) having SH priorities met by the primary HIV provider and (2) having RH priorities met by the primary HIV provider. In bivariate analysis, the following variables were associated with decreased odds of both outcomes: sexual minority identity, gender minority identity, born in Canada and reporting HIV making it difficult to have a satisfying sexual relationship. Participants who recently accessed Oak Tree Clinic and with a history of being pregnant had increased odds of the two outcomes. Participants with future fertility desires had increased odds of having RH needs met by the primary HIV provider. Among a sub-sample of 268 participants, internalized HIV stigma and enacted HIV stigma were significantly associated with reduced odds of having SH needs met by the primary HIV provider.
Table 2.
Bivariate and multivariable logistic regression with generalized estimating equations for the relationships between key explanatory variables and having sexual health priorities met by the primary HIV provider
| Bivariate odds ratios and 95% confidence intervals | P-value | Multivariable odds ratios and 95% confidence intervals | P-value | |
|---|---|---|---|---|
| Age (years) | 0.99 [0.97–1.01] | 0.255 | 0.97 [0.94–0.99] | 0.013 |
| Sexual minority identity a | 0.55 [0.37–0.80] | 0.002 | 0.59 [0.37–0.94] | 0.027 |
| Gender minority identity b | 0.28 [0.17–0.44] | <0.001 | 0.52 [0.29–0.95] | 0.035 |
| Race | ||||
| Born in Canada | 0.48 [0.23–0.98] | 0.044 | ||
| Graduated high school | 1.32 [0.90–1.93] | 0.160 | ||
| Been homeless/living on the street * | 0.96 [0.62–1.48] | 0.845 | ||
| Exchanged sex for money/goods/services * | 0.74 [0.51–1.07] | 0.106 | ||
| In jail overnight or longer * | 1.31 [0.56–3.06] | 0.530 | ||
| Used non-injection opioids * | 1.15 [0.75–1.77] | 0.521 | ||
| Used non-injection stimulants * | 0.91 [0.67–1.24] | 0.551 | ||
| Used injection opioids * | 0.95 [0.69–1.30] | 0.745 | ||
| Used injection stimulants * | 0.83 [0.60–1.16] | 0.275 | ||
| Accessed Oak Tree Clinic * | 2.85 [1.85–4.38] | <0.001 | 4.25 [2.20–8.23] | <0.001 |
| Pregnant d | 2.35 [1.52–3.62] | <0.001 | ||
| Unplanned pregnancy d | 0.98 [0.67–1.45] | 0.928 | ||
| Abortion d | 1.44 [0.92–2.26] | 0.115 | ||
| Planning/hoping to have children in future | 1.04 [0.73–1.48] | 0.835 | ||
| HIV stigma scale * | 0.98 [0.96–1.01] | 0.176 | ||
| HIV stigma scale – perceived * | 0.90 [0.78–1.03] | 0.132 | ||
| HIV stigma scale – anticipated * | 0.96 [0.88–1.04] | 0.327 | ||
| HIV stigma scale – enacted * | 0.95 [0.89–1.00] | 0.063 | ||
| HIV stigma scale – internalized * | 0.95 [0.90–1.01] | 0.076 | ||
| HIV having negative emotional/psychological effects * | 0.87 [0.65–1.17] | 0.350 | ||
| HIV has made it difficult to have a satisfying sexual relationship * | 0.63 [0.43–0.92] | 0.018 | ||
| HIV status disclosure without consent d | 0.88 [0.60–1.29] | 0.503 | ||
| Experienced verbal/physical abuse due to HIV status * | 0.60 [0.39–0.94] | 0.026 | 0.55 [0.31–0.97] | 0.037 |
Last 6 months
Sexual minority includes gay, lesbian, bisexual, Two-Spirit, asexual, queer, or other
Gender minority includes trans, transsexual, Two-Spirit, genderqueer, or other
Indigenous includes First Nations, Métis, and Inuit peoples of Canada
Lifetime
Table 3.
Bivariate and multivariable logistic regression with generalized estimating equations for the associations between key explanatory variables and having reproductive health priorities met by HIV provider
| Bivariate odds ratios and 95% confidence intervals | P-value | Multivariable odds ratios and 95% confidence intervals | P-value | |
|---|---|---|---|---|
| Age (years) | 0.94 [0.93–0.96] | <0.001 | 0.94 [0.92–0.96] | <0.001 |
| Sexual minority identity a | 0.42 [0.31–0.58] | <0.001 | 0.56 [0.40–0.79] | 0.001 |
| Gender minority identity b | 0.21 [0.13–0.33] | <0.001 | 0.45 [0.25–0.81] | 0.008 |
| Race | ||||
| Born in Canada | 0.29 [0.14–0.57] | <0.001 | 0.29 [0.15–0.56] | <0.001 |
| Graduated high school | 1.02 [0.74–1.39] | 0.924 | ||
| Been homeless/living on the street * | 0.89 [0.62–1.28] | 0.529 | ||
| Exchanged sex for money/goods/services * | 0.89 [0.64–1.23] | 0.476 | ||
| In jail overnight or longer * | 1.78 [0.78–4.05] | 0.168 | ||
| Used non-injection opioids * | 0.89 [0.60–1.32] | 0.552 | ||
| Used non-injection stimulants * | 0.82 [0.64–1.06] | 0.123 | ||
| Used injection opioids * | 0.88 [0.65–1.20] | 0.418 | ||
| Used injection stimulants * | 0.85 [0.64–1.12] | 0.245 | ||
| Accessed Oak Tree Clinic * | 2.00 [1.47–2.72] | <0.001 | 1.81 [1.29–2.53] | <0.001 |
| Pregnant d | 3.22 [2.19–4.76] | <0.001 | 2.25 [1.47–3.44] | <0.001 |
| Unplanned pregnancy d | 1.32 [0.96–1.81] | 0.085 | ||
| Abortion d | 1.35 [0.97–1.89] | 0.076 | ||
| Planning/hoping to have children in future | 1.92 [1.35–2.73] | <0.001 | 1.51 [0.94–2.43] | 0.089 |
| HIV stigma scale * | 1.01 [0.99–1.03] | 0.410 | ||
| HIV stigma scale – perceived * | 1.04 [0.93–1.15] | 0.541 | ||
| HIV stigma scale – anticipated * | 1.04 [0.98–1.11] | 0.226 | ||
| HIV stigma scale – enacted * | 1.01 [0.96–1.06] | 0.697 | ||
| HIV stigma scale – internalized * | 0.99 [0.95–1.04] | 0.780 | ||
| HIV having negative emotional/psychological effects * | 1.10 [0.86–1.41] | 0.449 | ||
| HIV has made it difficult to have a satisfying sexual relationship * | 0.65 [0.47–0.89] | 0.007 | 0.75 [0.55–1.01] | 0.056 |
| HIV status disclosure without consent d | 0.87 [0.64–1.17] | 0.348 | ||
| Experienced verbal/physical abuse due to HIV status * | 0.76 [0.48–1.21] | 0.250 |
Last 6 months
Sexual minority includes gay, lesbian, bisexual, Two-Spirit, asexual, queer, or other
Gender minority includes trans, transsexual, Two-Spirit, genderqueer, or other
Indigenous includes First Nations, Métis, and Inuit peoples of Canada
Lifetime
Multivariable analysis on having SH priorities met by the primary HIV provider restricted to the subsample of 268 participants for inclusion of the HIV stigma sub-scales. On a p<0.05-level, the SH outcome was statistically significantly inversely associated with: age (AOR:0.97 per year older, 95%CI:0.94–0.99), sexual minority identity (AOR:0.59, 95%CI:0.37–0.94), gender minority identity (AOR:0.52, 95%CI:0.29–0.95) and recent verbal or physical violence related to HIV status (AOR:0.55, 95%CI:0.31–0.97) and positively associated with recently accessing Oak Tree Clinic (AOR:4.25, 95%CI:2.20–8.23) (Table 2).
At a p<0.05-level, having RH needs met by the primary HIV provider was inversely statistically significantly associated with: age (AOR:0.94 per year older, 95%CI:0.92–0.96), sexual minority identity (AOR:0.56, 95%CI:0.40–0.79), gender minority identity (AOR:0.45, 95%CI:0.25–0.81) and being born in Canada (AOR:0.29, 95%CI:0.15–0.56) and positively associated with recently accessing Oak Tree Clinic (AOR:1.81, 95%CI:1.29–2.53) and having a history of pregnancy (AOR:2.25, 95%CI:1.47–3.44) (Table 3).
DISCUSSION
This is the first study, to our knowledge, that has quantitatively examined the correlates of an important relational aspect of access to SRH services that relate to SRH needs, particularly surrounding key aspects of SRH including self-reported comfort discussing topics of SRH with HIV providers, among cis and trans women living with HIV. We found that the majority of our participants had their sexual and reproductive health needs met with their primary HIV provider. However, our study identifies that experiencing verbal or physical violence related to HIV status (a form of enacted HIV) stigma, was associated with decreased comfort discussing sexual health and/or getting a Papanicolaou test among women living with HIV. Importantly, our study also suggests that women living with HIV who identify as members of sexual and gender minority communities have lower odds of having their sexual and reproductive health priorities met. Furthermore, our study identifies accessing Oak Tree Clinic in the last six months, a women-centred, trauma-informed HIV clinic, as a strong facilitator to meeting sexual and reproductive health priorities.
The majority of participants had experienced at least one pregnancy in their lifetime (83.8%) and over half (52.6%) reported having at least one unplanned pregnancy. This is comparable to the national average as a recent statement released by the Society of Obstetricians and Gynecologists of Canada reported that as many as 61% of Canadian cis women have had at least one unplanned pregnancy.[35] Our results highlight the need for health providers to create safe, non-judgmental and non-stigmatizing spaces for women living with HIV to discuss their sexual and reproductive health, including contraception and prevention of sexually transmitted infections.
Women living with HIV who had experienced verbal or physical abuse due to their HIV status in the last six months had nearly half the odds of being comfortable discussing their sexual health and/or getting a Papanicolaou test in multivariable analysis. Previous literature has not identified a significant association between HIV stigma and engagement in sexual health services among women living with HIV.[36,37] HIV-related stigma has been identified in the literature as a barrier to health care access for people living with HIV, including along the HIV care continuums (e.g., HIV testing, accessing care, adhering to treatment regimens)[20,21], although not in the context of sexual health and more frequently in resource-limited countries. Enacted stigma has been associated with internalized HIV stigma and depressive symptoms, both factors identified as health services barriers, and delays in seeking care.[38,39] The adverse effect of enacted HIV stigma on comfort discussing sexual health is understandable given that women living with HIV who have experienced this form of stigma likely shy away from conversations that may bring about further judgement, such as sexual activity or contraceptive use. These results underscore the importance of creating rapport and building a trusting, non-judgmental and non-discriminatory relationship with women living with HIV to establish a safe environment to support discussions of sexual health.
Both identifying as members of sexual minority and gender minority communities were inversely associated with feeling comfortable discussing both sexual health and/or getting a Papanicolaou test and reproductive health and/or pregnancy needs. Information on reproductive choices and rights with sexual and gender minority women is limited and marginalized, but increasing. Evidence suggests that sexual and gender minority women and trans people have similar parenting priorities and preferences as those by the majority of Western society, but higher anticipation of barriers including stigma relative to cis/heterosexual women.[40,41] Our results corroborate the current literature, which suggests that trans women and LGBTQ2S+ people more broadly have limited access to HIV prevention and treatment even though they remain disproportionately affected by HIV.[42,43] Intersecting social identities can produce heightened marginalization, including among women living with HIV who may experience intersectional heterosexism where they are assumed to be heterosexual due to erasure of sexual minority women in HIV research.[44] A recent Canadian study of cis and trans women living with HIV found that women who identify as members of sexual minority communities had higher odds of experiencing racial and gender discrimination than heterosexual women living with HIV.[42] Some trans women have transition-related SRH needs that have not historically been considered within the scope of primary care practices. These include specific barrier methods for contraception and post-operative care for gender-confirming surgery. Physicians have reported lack of knowledge and education about trans health needs as a barrier to providing care with trans people[45] while trans women living with HIV have cited lack of availability of HIV care providers specializing in gender-affirming care as a primary reason for not accessing HIV care.[46] Upstream solutions such as increased education and training in sexual minority and gender-affirming care are urgently needed. Qualitative research should be conducted with sexual minority and gender minority women living with HIV to understand complex barriers and facilitators to supporting safe discussions of SRH, and programs and interventions that can support sexual and reproductive health and rights of all women living with HIV.
In multivariable analysis, our study suggested that being born outside of Canada was significantly associated with being comfortable discussing reproductive health and/or pregnancy needs. Limited research is available to compare our results to other studies. For im/migrant women living with HIV who come from outside Canada and/or may have language barriers in our study, there are significant benefits to having their reproductive care available through their HIV care provider. This streamlines and simplifies the process of obtaining medical care and minimizes the number of instances these women living with HIV are required to share their personal medical and HIV history. This also avoids unnecessary conversations with providers who may not have the expertise or experience caring for people living with HIV. There are already many barriers present in navigating a new and unfamiliar health care system for im/migrant women living with HIV, we can minimize the burden on these women by providing holistic care that encompasses their SRH needs through their primary HIV provider.
Participants who had ever been pregnant and those who had accessed women-centred HIV services at Oak Tree Clinic in the last six months had 2.25- and 1.81-fold higher odds of being comfortable discussing their reproductive health and/or pregnancy needs, respectively. A history of Oak Tree services was also positively associated with being comfortable discussing sexual health. The Oak Tree clinic is the provincial referral centre for women living with HIV and their families in BC and takes a women-centred, trauma-informed approach to HIV care and practice. Key clinical components designed to support women living with HIV include integrated on-site services for HIV, primary care, mental health and women’s health, including specialized gynecological care. The Oak Tree Clinic care model is built on a foundation of trauma- and violence-aware practice and responsiveness to social-structural health determinants (e.g., poverty, drug use, housing, and HIV stigma), and prioritizes peer support and outreach.[29] Collectively, these non-judgmental, supportive components are likely to strengthen trusting relationships between providers and patients, and facilitate conversations about sensitive topics, including sexual and reproductive health. The other side of this association is that women living with HIV without a history of pregnancy and who do not have access to trauma-informed, women-centred services such as Oak Tree Clinic may be less likely to engage in SRH conversations. This gap in access must be addressed so that all women living with HIV feel comfortable accessing SRH services, regardless of their pregnancy history and within all HIV care settings. Increasing accessibility with expanded models of trauma-informed, women-centred care may require time and policy change, but individual providers can adapt their care to include tailored programming for women that reflect successful approaches.[47–49]
Women living with HIV need to feel comfortable discussing reproductive and sexual health in order to effectively engage in sexual and reproductive healthcare services. Previous literature has shown that some providers default to contraceptive counselling and the burden is on the patient to express their interest in planning a pregnancy.[11,50] Although HIV providers are working to integrate primary services with SRH care, there is evidence that some may be underprepared to provide women living with HIV with comprehensive reproductive care.[5,50] Furthermore, there are documented episodes that even when prompted by their provider, some patients who are uncomfortable discussing reproductive health will forgo these crucial conversations[11], which are necessary in optimizing safe sex practices and improving overall birth outcomes.
Our study results provide evidence to suggest that all primary HIV providers should receive SRH training. Previous research has suggested that receiving some SRH training has been shown to reduce stigma and improve provider attitudes, consequently increasing service satisfaction among people living with HIV.[51] Training in SRH care and practice with women living with HIV that is affirming of gender- and sexual minority identities is critical, including transition-related support for some trans women.[52] SRH care and practice with women living with HIV should be culturally safe and embody cultural humility,[53] and include trauma-informed principles. We draw on an understanding of trauma-informed practice principles in HIV practice through a Canadian study that looked at how to incorporate broad ideas of equity into primary and emergency care,[54] among other research.[55–57] Trauma-informed practice should be present at all levels of medical education for providers working with women living with HIV. A trauma-informed approach with HIV women living with HIV would focus first on building awareness and understanding of high levels of historical (collective and individual) and ongoing (interpersonal and systemic) trauma and violence among women living with HIV, how trauma can influence sexual and reproductive health and well-being, including through adaptations that people make to cope and survive. This awareness should include comprehensive learning on settler colonialism as the primary determinant of health, well-being and health services access of Indigenous people in Canada, as well as ongoing and historical interpersonal, inter-generational and systemic violence experience by Indigenous people, including the devastating impact of residential schools.[23,58] Training should also be done to understand structural discrimination and white privilege,[59] as well as cis/heteronormativity[60] embedded within health care systems as critical barriers to health care services access, including SRH. While screening for violence, trauma and mental health symptoms should be included in patient assessments, providers should build rapport through emphasizing safety and establishing trust with individuals, and know that this can be done without knowing specific details of past trauma, to facilitate discussions on sexual and reproductive health. People should be supported to disclose experiences of trauma and violence on their terms. Consent and confidentiality on all aspects of sexual and reproductive practice and care should be ensured. Women should play a leading role in decisions about their sexual and reproductive health and healthcare, and decisions should be arrived at collaboratively with a shared decision-making process. Women’s strengths should be emphasized, and flexible, tailored services and programs should be available to meet individuals’ specific priorities on sexual and reproductive health.
Limitations
This study has several limitations as well as strengths. Given that it is an observational study and data are self-reported, variables may be susceptible to social desirability bias. However, both the community-based nature of SHAWNA and our team of community interview and sexual health research nurses have built strong rapport with participants, and we expect that this largely mitigates this bias. Variables may also be subject to recall bias, particularly with reproductive health experiences, which may be underreported among older participants especially. Lastly, this study cannot infer causality and did not allow for detailed exploration of the pathways between variables. Further qualitative research is needed. While our outcomes were based on survey items designed in collaboration with staff, clinical collaborators, peer research associates and piloted with participants, the items as worded do not represent an exhaustive list of all the sexual and reproductive health priorities that women might have and they are likely different for some women and may have changed over time. These questions may not adequately reflect the priorities of trans and gender-diverse women living with HIV. Future qualitative research would complement our study to better understand the sexual and reproductive health priorities of cis and trans women living with HIV and the drivers of the sexual and reproductive health priorities that go unmet.
CONCLUSION
Our findings suggest that there remain unmet priorities for safe SRH care and practice among women living with HIV, and in particular, for women living with HIV with sexual and/or gender minority identity and those who experience verbal or physical violence associated with HIV status, a form of enacted HIV stigma. HIV providers should create safe, non-judgmental environments to facilitate discussions on SRH. These environments should be sexual- and gender-minority-positive and affirming culturally safe, culturally humble and use trauma-informed approaches.
Acknowledgements
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 current SHAWNA team, including: Elissa Aikema, Zoe Hassall, Dana Krementz, Emma Kuntz, Melanie Lee, Lois Luo, Lauren McCraw, Desire Tibashoboka, Brittney Udall and Akanée Yamaki. We also thank Melissa Braschel, Megan Bobetsis, Shannon Bundock, Rayka Kumru, Sylvia Machat, Kate Milberry, Amber Stefanson and Peter Vann for their operations, communications, research and administrative support and Mary Kestler from Oak Tree Clinic, the Study Physician.
Funding
This research was supported by grants from the Canadian Institutes of Health Research (FDN-143349, MOP-133617 and CBR-151184). Approval provided by the Providence Health Care/University of British Columbia Research Ethics Boards. REB number H14-01073.
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