Tracey Conway

Establishing the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS): Operationalizing Community-based Research in a Large National Quantitative Study

BackgroundCommunity-based research has gained increasing recognition in health research over the last two decades. Such participatory research approaches are lauded for their ability to anchor research in lived experiences, ensuring cultural appropriateness, accessing local knowledge, reaching marginalized communities, building capacity, and facilitating research-to-action. While having these positive attributes, the community-based health research literature is predominantly composed of small projects, using qualitative methods, and set within geographically limited communities. Its use in larger health studies, including clinical trials and cohorts, is limited. We present the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), a large-scale, multi-site, national, longitudinal quantitative study that has operationalized community-based research in all steps of the research process. Successes, challenges and further considerations are offered.DiscussionThrough the integration of community-based research principles, we have been successful in: facilitating a two-year long formative phase for this study; developing a novel survey instrument with national involvement; training 39 Peer Research Associates (PRAs); offering ongoing comprehensive support to PRAs; and engaging in an ongoing iterative community-based research process. Our community-based research approach within CHIWOS demanded that we be cognizant of challenges managing a large national team, inherent power imbalances and challenges with communication, compensation and volunteering considerations, and extensive delays in institutional processes. It is important to consider the iterative nature of community-based research and to work through tensions that emerge given the diverse perspectives of numerous team members.ConclusionsCommunity-based research, as an approach to large-scale quantitative health research projects, is an increasingly viable methodological option. Community-based research has several advantages that go hand-in-hand with its obstacles. We offer guidance on implementing this approach, such that the process can be better planned and result in success.

Hear(ing) New Voices: Peer Reflections from Community-Based Survey Development with Women Living with HIV

Background: The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) engaged in an innovative community-based survey development process.Objectives: We sought to provide 1) an overview of the survey development process, and 2) personal reflections from women living with human immunodeficiency virus (HIV; “peers”) on their own observations of strengths and short-comings of the process and opportunities for improvement.Methods: Guided by the principles of community-based research (CBR) and meaningful involvement of women living with HIV (WLWH), CHIWOS coordinated a national, multidisciplinary research team, and facilitated a community based survey development process.Lessons Learned: Four key lessons emerged highlighting the importance of 1) accommodating different preferences for feedback collection, 2) finding the right combination of people and skills, 3) formalizing mentorship, and 4) creating guidelines on survey item reduction and managing expectations from the outset.Conclusions: Peers discussed the strengths and weaknesses of participatory methodologies in survey development.

Access to conception planning information and services for people living with HIV in Ontario, Canada: A community-based research study

Decreased mortality, decreased risk of vertical HIV transmission, and many people living with HIV (PLWHIV) being of reproductive age have led many PLWHIV to consider pregnancy. However, scarce data exist regarding the conception planning resources required and available for PLWHIV to have safe and healthy pregnancies. This study aimed to identify gaps between the need for, knowledge of, and access to conception planning information and services among PLWHIV in Ontario, Canada. PLWHIV from three large and two small urban sites in Ontario were recruited (n = 63). Participants completed a cross-sectional survey assessing demographics, expectations and plans for conception, and knowledge about and access to existing conception information and services for PLWHIV. Univariate correlations and ranked analyses were used to assess the associations between the need for, knowledge of, and access to conception planning resources with various demographic variables. Participants’ median age was 40 years (interquartile range = 33–45) with 52% being female, 73% identified as heterosexual, and 27% as lesbian, gay, bisexual, queer, transgender, two-spirited, or other. Univariable analysis indicated that male PLWHIV and those from small urban areas were less likely to expect children in the future and less likely to speak to healthcare providers about conception planning. Although 63% of all participants intended to conceive and 44% had a plan for conception in the near future, only 30% had spoken to a healthcare provider about pregnancy and only 30% had some knowledge about conception planning and assisted reproductive services for safer conception for PLWHIV. Knowledge of and access to resources on conception planning for PLWHIV varied by sexual orientation and geographic location in Ontario. Our results show a gap between the need for conception information and knowledge of and access to adequate information and resources among PLWHIV in Ontario, which may impact the psychosocial well-being of PLWHIV and their children.

No. 354-Canadian HIV Pregnancy Planning Guidelines

OBJECTIVE The objective of the Canadian HIV Pregnancy Planning Guidelines is to provide clinical information and recommendations for health care providers to assist Canadians affected by HIV with their fertility, preconception, and pregnancy planning decisions. These guidelines are evidence- and community-based and flexible and take into account diverse and intersecting local/population needs based on the social determinants of health. INTENDED OUTCOMES EVIDENCE: Literature searches were conducted by a librarian using the Medline, Cochrane Central Register of Controlled Trials (CENTRAL), and Embase databases for published articles in English and French related to HIV and pregnancy and HIV and pregnancy planning for each section of the guidelines. The full search strategy is available upon request. VALUES The evidence obtained was reviewed and evaluated by the Infectious Diseases Committee of the SOGC under the leadership of the principal authors, and recommendations were made according to the guidelines developed by the Canadian Task Force on Preventive Health Care and through use of the Appraisal of Guidelines Research and Evaluation instrument for the development of clinical guidelines. BENEFITS, HARMS, AND COSTS Guideline implementation should assist the practitioner in developing an evidence-based approach for the prevention of unplanned pregnancy, preconception, fertility, and pregnancy planning counselling in the context of HIV infection. VALIDATION These guidelines have been reviewed and approved by the Infectious Disease Committee and the Executive and Council of the SOGC. SPONSOR Canadian Institutes of Health Research Grant Planning and Dissemination grant (Funding Reference # 137186), which funded a Development Team meeting in 2016. RECOMMENDATIONS

Pregnancy incidence and intention after HIV diagnosis among women living with HIV in Canada

Background Pregnancy incidence rates among women living with HIV (WLWH) have increased over time due to longer life expectancy, improved health status, and improved access to and HIV prevention benefits of combination antiretroviral therapy (cART). However, it is unclear whether intended or unintended pregnancies are contributing to observed increases. Methods We analyzed retrospective data from the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS). Kaplan-Meier methods and GEE Poisson models were used to measure cumulative incidence and incidence rate of pregnancy after HIV diagnosis overall, and by pregnancy intention. We used multivariable logistic regression models to examine independent correlates of unintended pregnancy among the most recent/current pregnancy. Results Of 1,165 WLWH included in this analysis, 278 (23.9%) women reported 492 pregnancies after HIV diagnosis, 60.8% of which were unintended. Unintended pregnancy incidence (24.6 per 1,000 Women-Years (WYs); 95% CI: 21.0, 28.7) was higher than intended pregnancy incidence (16.6 per 1,000 WYs; 95% CI: 13.8, 20.1) (Rate Ratio: 1.5, 95% CI: 1.2–1.8). Pregnancy incidence among WLWH who initiated cART before or during pregnancy (29.1 per 1000 WYs with 95% CI: 25.1, 33.8) was higher than among WLWH not on cART during pregnancy (11.9 per 1000 WYs; 95% CI: 9.5, 14.9) (Rate Ratio: 2.4, 95% CI: 2.0–3.0). Women with current or recent unintended pregnancy (vs. intended pregnancy) had higher adjusted odds of being single (AOR: 1.94; 95% CI: 1.10, 3.42), younger at time of conception (AOR: 0.95 per year increase, 95% CI: 0.90, 0.99), and being born in Canada (AOR: 2.76, 95% CI: 1.55, 4.92). Conclusion Nearly one-quarter of women reported pregnancy after HIV diagnosis, with 61% of all pregnancies reported as unintended. Integrated HIV and reproductive health care programming is required to better support WLWH to optimize pregnancy planning and outcomes and to prevent unintended pregnancy.

Prevalence and Correlates of Forced Sex as a Self-Reported Mode of HIV Acquisition Among a Cohort of Women Living With HIV in Canada:

Gender-based violence (GBV) is a global epidemic associated with increased HIV exposure. We assessed the prevalence and correlates of HIV acquisition via forced sex among women living with HIV (WLWH) in Canada. Baseline questionnaire data were analyzed for WLWH (≥16 years) with data on self-reported mode of HIV acquisition, enrolled in a community-based cohort study in British Columbia, Ontario, and Québec. We assessed forced sex (childhood, adulthood) as a self-reported mode of HIV acquisition. Of 1,330 participants, the median age was 42 (interquartile range [IQR] = 35-50) years; 23.5% were Indigenous, 26.3% African/Caribbean/Black, 43% White, and 7.2% of Other ethnicities. Forced sex was the third dominant mode of HIV transmission at 16.5% (n = 219; vs. 51.6% consensual sex, 19.7% sharing needles, 5.3% blood transfusion, 3.8% perinatal, 1.3% contaminated needles, 0.4% other, 1.6% do not know/prefer not to answer). In multivariable analyses, significant correlates of HIV acquisition from forced versus consensual sex included legal status as a landed immigrant (adjusted odds ratio [aOR] = 1.99; 95% confidence interval [CI] = [1.12, 3.54]) or refugee (aOR = 3.62; 95% CI = [1.63, 8.04]) versus Canadian citizen; African/Caribbean/Black ethnicity versus Caucasian (aOR = 2.49; 95% CI = [1.43, 4.35]), posttraumatic stress disorder symptoms (aOR = 3.00; 95% CI = [1.68, 5.38]), histories of group home residence (aOR = 2.40; 95% CI = [1.10, 5.23]), foster care (aOR = 2.18; 95% CI = [1.10, 4.34]), and having one child relative to having three or more children (aOR = 0.52; 95% CI = [0.31, 0.89]). GBV must be considered a distinct HIV risk factor; forced sex is a significant underrecognized risk factor and mode of women’s HIV acquistion. Public health reporting systems can separate consensual and forced sex in reporting modes of HIV acquisition. Practitioners can engage in screening practices to meet client needs.

Factors Associated with the Separate and Concurrent Experiences of Food and Housing Insecurity Among Women Living with HIV in Canada

People living with HIV are disproportionately affected by food and housing insecurity. We assessed factors associated with experiencing food and/or housing insecurity among women living with HIV (WLHIV) in Canada. In our sample of WLHIV (N = 1403) 65% reported an income less than

Access and engagement in HIV care among a national cohort of women living with HIV in Canada

20,000 per year. Most (78.69%) participants reported food and/or housing insecurity: 27.16% reported experiencing food insecurity alone, 14.26% reported housing insecurity alone, and 37.28% reported experiencing food and housing insecurity concurrently. In adjusted multivariable logistic regression analyses, experiencing concurrent food and housing insecurity was associated with: lower income, Black ethnicity versus White, province of residence, current injection drug use, lower resilience, HIV-related stigma, and racial discrimination. Findings underscore the urgent need for health professionals to assess for food and housing insecurity, to address the root causes of poverty, and for federal policy to allocate resources to ameliorate economic insecurity for WLHIV in Canada.

High rates of posttraumatic stress symptoms in women living with HIV in Canada

ABSTRACT Attrition along the cascade of HIV care poses significant barriers to attaining the UNAIDS targets of 90-90-90 and achieving optimal treatment outcomes for people living with HIV. Understanding the correlates of attrition is critical and particularly for women living with HIV (WLWH) as gender disparities along the cascade have been found. We measured the proportion of the 1425 WLWH enrolled in the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) who had never accessed HIV medical care, who reported delayed linkage into HIV care (>3 months between diagnosis and initial care linkage), and who were not engaged in HIV care at interview (<1 visit in prior year). Correlates of these cascade indicators were determined using univariate and multivariable logistic regression. We found that 2.8% of women had never accessed HIV care. Of women who had accessed HIV care, 28.7% reported delayed linkage and 3.7% were not engaged in HIV care. Indigenous women had higher adjusted odds of both a lack of access and delayed access to HIV care. Also, a younger age, unstable housing, history of recreational drug use, and experiences of everyday racism emerged as important barriers to ever accessing care. Programmatic efforts to support early linkage to and engagement in care for WLWH in Canada must address several social determinants of health, such as housing insecurity and social exclusion, and prioritize engagement of Indigenous women through culturally safe and competent practices.

HIV-related stigma, racial discrimination, and gender discrimination: Pathways to physical and mental health-related quality of life among a national cohort of women living with HIV

Purpose Women living with HIV experience high levels of trauma exposure before and after diagnosis. One of the most challenging outcomes following trauma exposure is posttraumatic stress disorder. Despite high exposure to traumatic events, the presence and contributors to posttraumatic stress disorder symptoms have not been examined in women living with HIV in Canada. Methods The current study examines the presence of, contributors to, and geographical regions associated with self-reported posttraumatic stress symptoms (PTSS) among 1405 women enrolled in the Canadian HIV Women’s Sexual & Reproductive Health Cohort Study (CHIWOS). Results Separate linear regression models were run for the three provinces in the cohort: British Columbia, Ontario and Québec. Scores consistent with posttraumatic stress disorder were reported by 55.9%, 39.1% and 54.1% of the participants in each province, respectively (F(2, 1402) = 13.53, p < .001). Conclusions The results demonstrate that women living with HIV have high rates of PTSS, and that rates and variables associated with these symptoms vary by province. These results suggest the need for trauma-informed practices and care for women living with HIV in Canada, which may need to be tailored for the community and identities of the women.