Hiring, training, and supporting Peer Research Associates: Operationalizing community-based research principles within epidemiological studies by, with, and for women living with HIV.

BACKGROUND: A community-based research (CBR) approach is critical to redressing the exclusion of women-particularly, traditionally marginalized women including those who use substances-from HIV research participation and benefit. However, few studies have articulated their process of involving and engaging peers, particularly within large-scale cohort studies of women living with HIV where gender, cultural and linguistic diversity, HIV stigma, substance use experience, and power inequities must be navigated. METHODS: Through our work on the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS), Canada's largest community-collaborative longitudinal cohort of women living with HIV (n = 1422), we developed a comprehensive, regionally tailored approach for hiring, training, and supporting women living with HIV as Peer Research Associates (PRAs). To reflect the diversity of women with HIV in Canada, we initially hired 37 PRAs from British Columbia, Ontario, and Quebec, prioritizing women historically under-represented in research, including women who use or have used illicit drugs, and women living with HIV of other social identities including Indigenous, racialized, LGBTQ2S, and sex work communities, noting important points of intersection between these groups. RESULTS: Building on PRAs' lived experience, research capacity was supported through a comprehensive, multi-phase, and evidence-based experiential training curriculum, with mentorship and support opportunities provided at various stages of the study. Challenges included the following: being responsive to PRAs' diversity; ensuring PRAs' health, well-being, safety, and confidentiality; supporting PRAs to navigate shifting roles in their community; and ensuring sufficient time and resources for the translation of materials between English and French. Opportunities included the following: mutual capacity building of PRAs and researchers; community-informed approaches to study the processes and challenges; enhanced recruitment of harder-to-reach populations; and stronger community partnerships facilitating advocacy and action on findings. CONCLUSIONS: Community-collaborative studies are key to increasing the relevance and impact potential of research. For women living with HIV to participate in and benefit from HIV research, studies must foster inclusive, flexible, safe, and reciprocal approaches to PRA engagement, employment, and training tailored to regional contexts and women's lives. Recommendations for best practice are offered.

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

BACKGROUND: Community-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. DISCUSSION: Through 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. CONCLUSIONS: Community-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.

Impact of asymptomatic herpes simplex virus type 2 infection on mucosal homing and immune cell subsets in the blood and female genital tract.

HSV-2 infection is common and generally asymptomatic, but it is associated with increased HIV susceptibility and disease progression. This may relate to herpes-mediated changes in genital and systemic immunology. Cervical cytobrushes and blood were collected from HIV-uninfected African/Caribbean women in Toronto, and immune cell subsets were enumerated blindly by flow cytometry. Immune differences between groups were assessed by univariate analysis and confirmed using a multivariate model. Study participants consisted of 46 women, of whom 54% were infected with HSV-2. T cell activation and expression of the mucosal homing integrin α4ß7 (19.60 versus 8.76%; p < 0.001) were increased in the blood of HSV-2-infected women. Furthermore, expression of α4ß7 on blood T cells correlated with increased numbers of activated (coexpressing CD38/HLA-DR; p = 0.004) and CCR5(+) (p = 0.005) cervical CD4(+) T cells. HSV-2-infected women exhibited an increase in the number of cervical CD4(+) T cells (715 versus 262 cells/cytobrush; p = 0.016), as well as an increase in the number and proportion of cervical CD4(+) T cells that expressed CCR5(+) (406 versus 131 cells, p = 0.001; and 50.70 versus 34.90%, p = 0.004) and were activated (112 versus 13 cells, p < 0.001; and 9.84 versus 4.86%, p = 0.009). Mannose receptor expression also was increased on cervical dendritic cell subsets. In conclusion, asymptomatic HSV-2 infection was associated with significant systemic and genital immune changes, including increased immune activation and systemic α4ß7 expression; correlation of the latter with highly HIV-susceptible CD4(+) T cell subsets in the cervix may provide a mechanism for the increased HIV susceptibility observed in asymptomatic HSV-2-infected women.

Barriers to HIV pre-exposure prophylaxis among African, Caribbean and Black men in Toronto, Canada.

INTRODUCTION: Single-tablet combination emtricitabine/tenofovir is highly effective as HIV pre-exposure prophylaxis (PrEP). Scale-up efforts have targeted men who have sex with men (MSM), but patterns of racial disparities in PrEP use have begun to emerge. African, Caribbean and Black (ACB) communities in Canada and USA are also disproportionately affected by HIV, and there is lack of guidance regarding PrEP implementation in this priority population. METHODS: ACB men from Toronto, Canada were recruited in community settings by peers. Participants completed a detailed socio-behavioural questionnaire. Biological samples were collected and tested for sexually transmitted infections. Willingness to accept PrEP was assessed in relation to actual and self-perceived risk of acquiring HIV, as well as demographic and behavioural variables. RESULTS: 424 ACB men were included in the analysis. ACB MSM were more likely to accept PrEP than ACB men only reporting sex with women (MSW; 50.0% vs. 23.6%). The most common reasons for PrEP non-acceptance were concerns regarding side-effects and low self-perceived risk. PrEP acceptance was lowest among younger men (12.5%) and those born in Canada (15.2%). Men with a high self-perceived HIV risk were more likely to accept PrEP (41.3% vs. 22.7% of men with a low self-perceived risk), but only 25.4% of men who were defined as being at high-risk, self-identified themselves as such. CONCLUSIONS: Most ACB MSW were unlikely to accept PrEP, largely due to low self-perceived HIV risk, but PrEP acceptance among ACB MSM was similar to other contemporaneous Toronto MSM communities. PrEP acceptance was particularly low among younger ACB men and those born in Canada. Tailored strategies will be needed to effectively implement PrEP in Toronto ACB communities.

Cohort profile: The Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS).

Globally, women are at increased vulnerability to HIV due to biological, social, structural, and political reasons. Women living with HIV also experience unique issues related to their medical and social healthcare, which makes a clinical care model specific to their needs worthy of exploration. Furthermore, there is a dearth of research specific to women living with HIV. Research for this population has often been narrowly focused on pregnancy-related issues without considering their complex structural inequalities, social roles, and healthcare and biological needs. For these reasons, we have come together, as researchers, clinicians and community members in Canada, to develop the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS) to investigate the concept of women-centred HIV care (WCHC) and its impact on the overall, HIV, women's, mental, sexual, and reproductive health outcomes of women living with HIV. Here, we present the CHIWOS cohort profile, which describes the cohort and presents preliminary findings related to perceived WCHC. CHIWOS is a prospective, observational cohort study of women living with HIV in British Columbia (BC), Ontario, and Quebec. Two additional Canadian provinces, Saskatchewan and Manitoba, will join the cohort in 2018. Using community-based research principles, CHIWOS engages women living with HIV throughout the entire research process meeting the requirements of the 'Greater Involvement of People living with HIV/AIDS'. Study data are collected through an interviewer-administered questionnaire that uses a web-based platform. From August 2013 to May 2015, a total of 1422 women living with HIV in BC, Ontario, and Quebec were enrolled and completed the baseline visit. Follow-up interviews are being conducted at 18-month intervals. Of the 1422 participants at baseline, 356 were from BC (25%), 713 from Ontario (50%), 353 from Quebec (25%). The median age of the participants at baseline was 43 years (range, 16-74). 22% identified as Indigenous, 30% as African, Caribbean or Black, 41% as Caucasian/White, and 7% as other ethnicities. Overall, 83% of women were taking antiretroviral therapy at the time of the baseline interview and of them, 87% reported an undetectable viral load. Of the 1326 women who received HIV medical care in the previous year and responded to corresponding questions, 57% (95% CI: 54%-60%) perceived that the care they received from their primary HIV doctor had been women-centred. There were provincial and age differences among women who indicated that they received WCHC versus not; women from BC or Ontario were more likely to report WCHC compared to participants in Quebec. They were also more likely to be younger. CHIWOS will be an important tool to develop care models specific for women living with HIV. Moreover, CHIWOS is collecting extensive information on socio-demographics, social determinants of health, psychological factors, and sexual and reproductive health and offers an important platform to answer many relevant research questions for and with women living with HIV. Information on the cohort can be found on the study website (http://www.chiwos.ca).

Sexual inactivity and sexual satisfaction among women living with HIV in Canada in the context of growing social, legal and public health surveillance.

INTRODUCTION: Women represent nearly one-quarter of the 71,300 people living with HIV in Canada. Within a context of widespread HIV-related stigma and discrimination and on-going risks to HIV disclosure, little is known about the influence of growing social, legal and public health surveillance of HIV on sexual activity and satisfaction of women living with HIV (WLWH). METHODS: We analyzed baseline cross-sectional survey data for WLWH (≥16 years, self-identifying as women) enrolled in the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS), a multisite, longitudinal, community-based research study in British Columbia (BC), Ontario (ON) and Quebec (QC). Sexual inactivity was defined as no consensual sex (oral or penetrative) in the prior six months, excluding recently postpartum women (≤6 months). Satisfaction was assessed using an item from the Sexual Satisfaction Scale for Women. Multivariable logistic regression analysis examined independent correlates of sexual inactivity. RESULTS: Of 1213 participants (26% BC, 50% ON, 24% QC), median age was 43 years (IQR: 35, 50). 23% identified as Aboriginal, 28% as African, Caribbean and Black, 41% as White and 8% as other ethnicities. Heterosexual orientation was reported by 87% of participants and LGBTQ by 13%. In total, 82% were currently taking antiretroviral therapy (ART), and 77% reported an undetectable viral load (VL<40 copies/mL). Overall, 49% were sexually inactive and 64% reported being satisfied with their current sex lives, including 49% of sexually inactive and 79% of sexually active women (p<0.001). Sexually inactive women had significantly higher odds of being older (AOR=1.06 per year increase; 95% CI=1.05-1.08), not being in a marital or committed relationship (AOR=4.34; 95% CI=3.13-5.88), having an annual household income below $20,000 CAD (AOR: 1.44; 95% CI=1.08-1.92), and reporting high (vs. low) HIV-related stigma (AOR=1.81; 95% CI=1.09-3.03). No independent association was found with ART use or undetectable VL. CONCLUSIONS: Approximately half of WLWH in this study reported being sexually inactive. Associations with sexual dissatisfaction and high HIV-related stigma suggest that WLWH face challenges navigating healthy and satisfying sexual lives, despite good HIV treatment outcomes. As half of sexually inactive women reported being satisfied with their sex lives, additional research is required to determine whether WLWH are deliberately choosing abstinence as a means of resisting surveillance and disclosure expectations associated with sexual activity. Findings underscore a need for interventions to de-stigmatize HIV, support safe disclosure and re-appropriate the sexual rights of WLWH.