Tande nou gwonde! (Hear us roar!)- Youth perspectives of maternal near-misses: Protocol for a photovoice study of young childbearing people's perspectives of maternal near-misses in northwest Haiti.

INTRODUCTION: Globally, a shift is occurring to recognize the importance of young peoples' health and well-being, their unique health challenges, and the potential they hold as key drivers of change in their communities. In Haiti, one of the four leading causes of death for those 20-24 years old is pregnancy, childbirth, and the weeks after birth or at the end of a pregnancy. Important gaps remain in existing knowledge about youth perspectives of maternal health and well-being within their communities. Youth with lived experiences of maternal near-misses are well-positioned to contribute to the understanding of maternal health in their communities and their potential role in bringing about change. OBJECTIVES: To explore and understand youth perspectives of maternal near-miss experiences that occurred in a local healthcare facility or at home in rural Haiti. METHODS: We will conduct a qualitative, community-based participatory research study regarding maternal near-miss experiences to understand current challenges and identify solutions to improve community maternal health, specifically focused on youth maternal health. We will use Photovoice to seek an understanding of the lived experiences of youth maternal near-miss survivors. Participants will be from La Pointe, a Haitian community served by their local healthcare facility. We will undertake purposeful sampling to recruit approximately 20 female youth, aged 15-24 years. Data will be generated through photos, individual interviews and small group discussions (grouped by setting of near-miss experience). Data generation and analysis are expected to occur over a three-month period. ETHICS AND DISSEMINATION: Ethics approval will be sought from Centre Médical Béraca in La Pointe, Haiti, and from the Hamilton Integrated Research Ethics Board in Hamilton ON, Canada. We will involve community stakeholders, especially youth, in developing dissemination and knowledge mobilisation strategies. Our findings will be disseminated as an open access publication, be presented publicly, at conferences, and defended as part of a doctoral thesis.

Criminal Code reform of HIV non-disclosure is urgently needed: Social science perspectives on the harms of HIV criminalization in Canada.

The criminalization of HIV non-disclosure represents a significant issue of concern among people living with HIV, those working across the HIV sector, public health practitioners, and health and human rights advocates around the world. Recently, the government of Canada began a review of the criminal law regarding HIV non-disclosure and invited feedback from the public about potential reforms to the Criminal Code. In light of this public consultation, this commentary examines social science research from Canadian scholars that documents the intersecting damaging effects of HIV criminalization. Canadian social scientists and other researchers have shown that HIV criminalization is applied in uneven and discriminatory ways, impedes HIV prevention efforts, perpetuates HIV stigma, and has a damaging impact on the daily lives of people living with HIV. We argue that there is an urgent need for reforms that will significantly restrict how the criminal law is applied to HIV non-disclosure.

RéSUMé: La criminalisation de la non-divulgation du VIH est une question très préoccupante pour les personnes vivant avec le VIH, celles qui travaillent dans le secteur du VIH, les praticiens et praticiennes de la santé publique et les porte-parole de la santé et des droits de la personne du monde entier. Récemment, le gouvernement du Canada a amorcé un examen du droit criminel portant sur la non-divulgation du VIH et a invité le public à commenter d'éventuelles réformes du Code criminel. À la lumière de cette consultation publique, notre commentaire porte sur les études en sciences sociales menées au Canada qui font état des effets croisés préjudiciables de la criminalisation du VIH. Des spécialistes des sciences sociales et d'autres chercheuses et chercheurs canadiens ont montré que la criminalisation du VIH est appliquée de façon inégale et discriminatoire, qu'elle nuit aux efforts de prévention du VIH, qu'elle perpétue la stigmatisation liée au VIH et qu'elle a des effets dommageables sur la vie quotidienne des personnes vivant avec le VIH. Nous soutenons qu'il existe un besoin urgent de réformes pour restreindre de façon appréciable l'application du droit criminel à la non-divulgation du VIH.

Community level youth-led interventions to improve maternal-neonatal outcomes in low- and middle-income countries: A systematic review of randomised trials.

Background: Evidence on the effectiveness of youth-led interventions for improving maternal-neonatal health and well-being of women and gender diverse childbearing people in low-income and middle-income countries (LMICs) is incomplete. We aimed to summarise the evidence on whether community level youth-led interventions can improve maternal and neonatal outcomes in LMICs. Methods: We included experimental studies of youth-led interventions versus no intervention, standard care, or another intervention. Participants were women and gender diverse childbearing people during antepartum, intrapartum, and postpartum periods. MEDLINE, Embase, CINAHL, Global Health, Web of Science, and Cochrane Library, and grey literature were searched to January 2023. All interventions addressing and targeting maternal-neonatal health and well-being that were youth-led and community level were included. Primary outcomes of interest were maternal death and neonatal death. We excluded based on population, intervention, comparison, and outcome (PICO) and design. Two reviewers independently extracted key information from each included study and assessed risk of bias. Random-effects meta-analysis was performed where there were sufficient data. The certainty of evidence was assessed using Grading of Recommendations, Assessment, Development and Evaluation (GRADE). A narrative synthesis was done for results that could not be pooled. Results: Of the 8054 records retrieved, four trials (21 813 enrolled participants) met the inclusion criteria. The Cooperative for Assistance and Relieve Everywhere, Inc. (CARE) Community Score Card intervention compared to standard reproductive health services control did not significantly improve Antenatal Care coverage (difference-in-differences estimate ß = 0.04; 95% confidence interval (CI) = -0.11, 0.18, P = 0.610; one study, low certainty of evidence). The multi-component social mobilisation interventions compared to standard of care had no effect on adolescent/youth pregnancy (adjusted odds ratio estimate = 1.08; 95% CI = 0.87, 1.33; three studies; low certainty of evidence). Conclusions: Youth-led interventions in LMICs did not show a significant improvement in maternal outcomes. More studies are required to make more precise conclusions. Registration: PROSPERO: CRD42021288798.

Practices, support and stigma related to infant feeding and postpartum engagement in care among women living with HIV in Canada.

Background: Breastfeeding is not recommended for women living with HIV (WLWH) in Canada. We described the prevalence of breastfeeding and explored experiences of care, support, and stigma related to infant feeding. Setting: Quebec, Ontario, and British Columbia (Canada). Methods: Data were obtained from the HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS) surveys, conducted between 2013 and 2018. Results: Breastfeeding was reported by 73.5% of the 786 women who delivered before HIV diagnosis and 7.3% of the 289 women who delivered after HIV diagnosis. Among them, earlier year of delivery, delivery outside of Canada, and African, Caribbean, Black ethnicity were independently associated with increased odds of breastfeeding. Among WLWH who had a live birth during the last year, 77% (40/52) felt that they had received support regarding infant feeding practices, and 77% (23/30) were concerned that not breastfeeding could lead to them being identified as WLWH. Among 71 women within one year postpartum at any one of the study waves, 89% reported having an undetectable viral load. Conclusion: Breastfeeding experiences were common among WLWH, most often prior to HIV diagnosis. Fear of unintentional HIV status disclosure when not breastfeeding and challenges to maintain an undetectable HIV viral load are important issues to address during postpartum care.

Community Level Youth-Led Interventions to Improve Maternal-Neonatal Outcomes in Low- and Middle-Income Countries: Protocol for a Systematic Review.

Introduction: On a global scale, women and childbearing people and neonates continue to die from preventable causes related to pregnancy or childbirth. Sustained and accelerated efforts are critical to improve maternal and neonatal health and well-being. Globally, youth are a growing population and have strength in their numbers. Youth are critical, key drivers of change in their communities. Young people hold the potential to affect positive change, and their meaningful engagement is important to improving maternal health and well-being in low- and middle-income countries. Objectives: To assess the effects of community level youth-led interventions for improving maternal-neonatal health and well-being compared with no interventions or another intervention. Methods: We will undertake a literature search that is comprehensive, complete, and exhaustive. This will include databases such as MEDLINE, EMBASE, and the Cochrane Library, as well as a grey literature search. In our systematic review, we will include experimental studies evaluating maternal-neonatal health and well-being associated with or because of the implementation of community level youth-led interventions. Participants will include women and childbearing people (of any age) during antepartum, intrapartum, and postpartum periods (up to 42 days postpartum). We will examine all interventions addressing and targeting maternal-neonatal health and well-being that are youth-led and community-based and aimed at the members of the community. Our comparators will be no intervention or another intervention. Our primary outcomes are maternal deaths and neonatal deaths. Our review will include only studies in low- and middle-income countries conducted in urban or rural areas. Ethics and Dissemination. Ethics approval is not required as we will use secondary data that is publicly available. There are no active participants in our study. We will involve key stakeholders and experts in maternal-neonatal health regarding dissemination and knowledge mobilization strategies. Our findings will be disseminated as an open access publication, be presented publicly, and defended as part of a doctoral thesis. This trial is registered with CRD42021288798.

Sexual Relationship Power Equity Is Associated With Consistent Condom Use and Fewer Experiences of Recent Violence Among Women Living With HIV in Canada.

BACKGROUND: Sexual relationship power (SRP) inequities, including having a controlling partner, have not been widely examined among women living with HIV (WLWH). We measured the prevalence and key outcomes of relationship control among WLWH in Canada. METHODS: Baseline data from WLWH (≥16 years), reporting consensual sex in the last month enrolled in a Canadian community-collaborative cohort study in British Columbia, Ontario, and Quebec, included the relationship control SRP subscale by Pulerwitz (2000). Scale scores were dichotomized into medium/low (score = 1-2.82) vs. high relationship control (score = 2.82-4), and high scores indicate greater SRP equity. Cronbach's alpha assessed scale reliability. Bivariate analyses compared women with high vs. medium/low relationship control. Crude and adjusted multinomial regression examined associations between relationship control and condom use [consistent (ref), inconsistent, or never]; any sexual, physical, and/or emotional violence; and physical and/or sexual violence [never (ref), recent (≤3 months ago), and previous (>3 months ago)]. RESULTS: Overall, 473 sexually active WLWH (33% of cohort), median age = 39 (IQR = 33-46) years, 81% on antiretroviral therapy, and 78% with viral loads <50 copies/mL were included. The subscale demonstrated good reliability (Cronbach's alpha = 0.92). WLWH with high relationship control (80%) were more likely ( P < 0.05) to be in a relationship, have no children, have greater resilience, and report less sociostructural inequities. In adjusted models, high relationship control was associated with lower odds of inconsistent vs. consistent condom use [adjusted odds ratio (aOR): 0.39 (95% confidence interval: 0.18 to 0.85)], any recent violence [aOR: 0.14 (0.04-0.47)] as well as recent physical and/or sexual [aOR : 0.05 (0.02-0.17)] but not previous violence (vs. never). DISCUSSION: Prioritizing relationship equity and support for WLWH is critical for addressing violence and promoting positive health outcomes.

Key recommendations for developing a national action plan to advance the sexual and reproductive health and rights of women living with HIV in Canada.

Action on the World Health Organization Consolidated guideline on sexual and reproductive health and rights of women living with HIV requires evidence-based, equity-oriented, and regionally specific strategies centred on priorities of women living with HIV. Through community-academic partnership, we identified recommendations for developing a national action plan focused on enabling environments that shape sexual and reproductive health and rights by, with, and for women living with HIV in Canada. Between 2017 and 2019, leading Canadian women's HIV community, research, and clinical organizations partnered with the World Health Organization to convene a webinar series to describe the World Health Organization Consolidated guideline, define sexual and reproductive health and rights priorities in Canada, disseminate Canadian research and best practices in sexual and reproductive health and rights, and demonstrate the importance of community-academic partnerships and meaningful engagement of women living with HIV. Four webinar topics were pursued: (1) Trauma and Violence-Aware Care/Practice; (2) Supporting Safer HIV Disclosure; (3) Reproductive Health, Rights, and Justice; and (4) Resilience, Self-efficacy, and Peer Support. Subsequent in-person (2018) and online (2018-2021) consultation with > 130 key stakeholders further clarified priorities. Consultations yielded five cross-cutting key recommendations:1. Meaningfully engage women living with HIV across research, policy, and practice aimed at advancing sexual and reproductive health and rights by, with, and for all women.2. Centre Indigenous women's priorities, voices, and perspectives.3. Use language that is actively de-stigmatizing, inclusive, and reflective of women's strengths and experiences.4. Strengthen Knowledge Translation efforts to support access to and uptake of contemporary sexual and reproductive health and rights information for all stakeholders.5. Catalyse reciprocal relationships between evidence and action such that action is guided by research evidence, and research is guided by what is needed for effective action.Topic-specific sexual and reproductive health and rights recommendations were also identified. Guided by community engagement, recommendations for a national action plan on sexual and reproductive health and rights encourage Canada to enact global leadership by creating enabling environments for the health and healthcare of women living with HIV. Implementation is being pursued through consultations with provincial and national government representatives and policy-makers.

Reimagining Research with Pregnant Women and Parents Who Consume Cannabis in the Era of Legalization: The Value of Integrating Intersectional Feminist and Participatory Action Approaches.

Research on women who consume cannabis has predominantly focused on the perinatal period whereby cannabis consumption is problematized, linked to negative perinatal outcomes, and related to substance use and mental health challenges. When this historical literature and research about cannabis consumption is considered through a sociolegal and intersectional lens, questions emerge about how cannabis legalization may benefit and harm women, particularly women who experience marginalization along various axes of identity such as gender, race, and class. Questions also emerge about how women who consume cannabis may be perceived, represented, and treated as part of health and social care practices, particularly while pregnant and parenting. This commentary seeks to untangle what could be at stake for pregnant women and mothers, and what could be emphasized in future research endeavors, in the new era of cannabis legalization in Canada. The authors encourage research initiatives that attend to and reimagine harm reduction philosophies, and that integrate intersectional, feminist, and participatory action research approaches.

Awareness and Understanding of HIV Non-disclosure Case Law and the Role of Healthcare Providers in Discussions About the Criminalization of HIV Non-disclosure Among Women Living with HIV in Canada.

In 2012, the Supreme Court of Canada ruled that people with HIV are legally obligated to disclose their serostatus before sex with a "realistic possibility" of HIV transmission, suggesting a legal obligation to disclose unless they use condoms and have a low HIV viral load (< 1500 copies/mL). We measured prevalence and correlates of ruling awareness among 1230 women with HIV enrolled in a community-based cohort study (2015-2017). While 899 (73%) participants had ruling awareness, only 37% were both aware of and understood ruling components. Among 899 aware participants, 34% had never discussed disclosure and the law with healthcare providers, despite only 5% being unwilling to do this. Detectable/unknown HIV viral load, lack of awareness of prevention benefits of antiretroviral therapy, education ≤ high-school and high HIV-related stigma were negatively associated with ruling awareness. Discussions around disclosure and the law in community and healthcare settings are warranted to support women with HIV.

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.

Love with HIV: A Latent Class Analysis of Sexual and Intimate Relationship Experiences Among Women Living with HIV in Canada.

Love remains hidden in HIV research in favor of a focus on risk. Among 1424 women living with HIV in Canada, we explored (1) whether eight facets of sex and intimacy (marital status, sexual activity, physical intimacy, emotional closeness, power equity, sexual exclusivity, relationship duration, and couple HIV serostatus) may coalesce into distinct relationship types, and (2) how these relationship types may be linked to love as well as various social, psychological, and structural factors. Five latent classes were identified: no relationship (46.5%), relationships without sex (8.6%), and three types of sexual relationships-short term (15.4%), long term/unhappy (6.4%), and long term/happy (23.2%, characterized by equitable power, high levels of physical and emotional closeness, and mainly HIV-negative partners). While women in long-term/happy relationships were most likely to report feeling love for and wanted by someone "all of the time," love was not exclusive to sexual or romantic partners and a sizeable proportion of women reported affection across latent classes. Factors independently associated with latent class membership included age, children living at home, sexism/genderism, income, sex work, violence, trauma, depression, HIV treatment, awareness of treatment's prevention benefits, and HIV-related stigma. Findings reveal the diversity of women's experiences with respect to love, sex, and relationships and draw attention to the sociostructural factors shaping intimate partnering in the context of HIV. A nuanced focus on promoting healthy relationships and supportive social environments may offer a more comprehensive approach to supporting women's overall sexual health and well-being than programs focused solely on sexual risk reduction.

Previous experiences of pregnancy and early motherhood among women living with HIV: a latent class analysis.

Previous maternity experiences may influence subsequent reproductive intentions and motherhood experiences. We used latent class analysis to identify patterns of early motherhood experience reported for the most recent live birth of 905 women living with HIV enrolled in the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS). Four indicators were used: difficulties getting pregnant, feelings when finding out pregnancy, feelings during pregnancy, and feelings during the first year postpartum. Most (70.8%) pregnancies analyzed occurred before HIV diagnosis. A four-class maternity experience model was selected: "overall positive experience" (40%); "positive experience with postpartum challenges" (23%); "overall mixed experience" (14%); and "overall negative experience" (23%). Women represented in the "overall negative experience" class were more likely to be younger at delivery, to not know the HIV status of their pregnancy partner, and to report previous pregnancy termination. Women represented in the "positive experience with postpartum challenges" class were more likely to report previous miscarriage, stillbirth or ectopic pregnancy. We found no associations between timing of HIV diagnosis (before, during or after pregnancy) and experience patterns. Recognition of the different patterns of experiences can help providers offer a more adapted approach to reproductive counseling of women with HIV.

How women living with HIV react and respond to learning about Canadian law that criminalises HIV non-disclosure: 'how do you prove that you told?'

The Women, ART and the Criminalization of HIV Study is a qualitative, arts-based research study focusing on the impact of the HIV non-disclosure law on women living with HIV in Canada. The federal law requires people living with HIV to disclose their HIV-positive status to sexual partners before engaging in sexual activities that pose what the Supreme Court of Canada called a 'realistic possibility of transmission'. Drawing on findings from seven education and discussion sessions with 48 women living with HIV regarding HIV non-disclosure laws in Canada, this paper highlights the ways in which women living with HIV respond to learning about the criminalisation of HIV non-disclosure. The most common emergent themes included: the way the law reproduces social and legal injustices; gendered experiences of intimate injustice; and the relationship between disclosure and violence against women living with HIV. These discussions illuminate the troubling consequences inherent in a law that is antithetical to the science of HIV transmission risk, and that fails to acknowledge the multiple barriers to HIV disclosure that women living with HIV experience. Women's experiences also highlight the various ways the law contributes to their experiences of sexism, racism and other forms of marginalisation in society.

Unmet basic needs negatively affect health-related quality of life in people aging with HIV: results from the Positive Spaces, Healthy Places study.

BACKGROUND: Basic needs (e.g., food security and stable housing) are important determinants of health and well-being, yet their impact on health-related quality of life (HRQoL) in the context of HIV and aging has not been systematically investigated. METHODS: Multiple linear regression models examined the relationship between unmet basic needs, and physical and mental HRQoL by age strata (20-34, 35-49 and 50+) in a cross-sectional sample of 496 people living with HIV in Ontario, Canada. RESULTS: An overwhelming majority of participants (87%) reported unmet needs related to food, clothing or housing. The prevalence of unmet basic needs in the two older groups appeared to be lower than among younger participants, but the difference did not reach statistical significance. The presence of unmet basic needs predicted substantially lower mean physical health and mental health summary scores in the two oldest groups. Notably, age moderated the influence of unmet basic needs on HRQoL. CONCLUSIONS: The availability and accessibility of food security, appropriate clothing and stable housing for people living with HIV who are aging need to become a higher priority for program planners and decision makers.

Supporting the Sexual Rights of Women Living With HIV: A Critical Analysis of Sexual Satisfaction and Pleasure Across Five Relationship Types.

In the context of human immunodeficiency virus (HIV), a focus on protecting others has overridden concern about women's own sexual well-being. Drawing on feminist theories, we measured sexual satisfaction and pleasure across five relationship types among women living with HIV in Canada. Of the 1,230 women surveyed, 38.1% were completely or very satisfied with their sexual lives, while 31.0% and 30.9% were reasonably or not very/not at all satisfied, respectively. Among those reporting recent sexual experiences (n = 675), 41.3% always felt pleasure, with the rest reporting usually/sometimes (38.7%) or seldom/not at all (20.0%). Sex did not equate with satisfaction or pleasure, as some women were completely satisfied without sex, while others were having sex without reporting pleasure. After adjusting for confounding factors, such as education, violence, depression, sex work, antiretroviral therapy, and provider discussions about transmission risk, women in long-term/happy relationships (characterized by higher levels of love, greater physical and emotional intimacy, more equitable relationship power, and mainly HIV-negative partners) had increased odds of sexual satisfaction and pleasure relative to women in all other relational contexts. Those in relationships without sex also reported higher satisfaction ratings than women in some sexual relationships. Findings put focus on women's rights, which are critical to overall well-being.

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).

Envisioning Women-Centered HIV Care: Perspectives from Women Living with HIV in Canada.

BACKGROUND: Women comprise nearly one-quarter of people living with human immunodeficiency virus (HIV) in Canada. Compared with men, women living with HIV experience inequities in HIV care and health outcomes, prompting a need for gendered and tailored approaches to HIV care. METHOD: Peer and academic researchers from the Canadian HIV Women's Sexual and Reproductive Health Cohort Study conducted focus groups to understand women's experience of seeking care, with the purpose of identifying key characteristics that define a women-centered approach to HIV care. Eleven focus groups were conducted with 77 women living with HIV across Quebec, Ontario, and British Columbia, Canada. RESULTS: Women envisioned three central characteristics of women-centered HIV care, including i) coordinated and integrated services that address both HIV and women's health care priorities, and protect against exclusion from care due to HIV-related stigma, ii) care that recognizes and responds to structural barriers that limit women's access to care, such as violence, poverty, motherhood, HIV-related stigma, and challenges to safe disclosure, and iii) care that fosters peer support and peer leadership in its design and delivery to honor the diversity of women's experiences, overcome women's isolation, and prioritize women's ownership over the decisions that affect their lives. CONCLUSION: Despite advances in HIV treatment and care, the current care landscape is inadequate to meet women's comprehensive care needs. A women-centered approach to HIV care, as envisioned by women living with HIV, is central to guiding policy and practice to improve care and outcomes for women living with HIV in Canada.

Surviving Surveillance: How Pregnant Women and Mothers Living With HIV Respond to Medical and Social Surveillance.

Pregnant women and mothers living with HIV are under surveillance of service providers, family members, and the community at large. Surveillance occurs throughout the medical management of their HIV during pregnancy, preventing HIV transmission to their baby, infant feeding practices, and as part of assessments related to their ability to mother. Enacted and anticipatory HIV-related stigma can exacerbate the negative impact that being under surveillance has on mothers living with HIV as they move through their pregnancy, birthing, and mothering experiences. In response, women living with HIV find ways to manage their experiences of surveillance through engaging in acts of distancing, planning, and resisting at different points in time, and sometimes enacting all three practices at once. Positioning the narratives of pregnant women and mothers living with HIV in relation to their experiences of surveillance illuminates the relationship between the surveillance of mothers living with HIV and HIV-related stigma.

HIV-related stigma in pregnancy and early postpartum of mothers living with HIV in Ontario, Canada.

HIV-related stigma is associated with many psychological challenges; however, minimal research has explored how perceived HIV-related stigma intersects with psychosocial issues that mothers living with HIV may experience including depression, perceived stress and social isolation. The present study aims to describe the correlates and predictors of HIV-related stigma in a cohort of women living with HIV (WLWH) from across Ontario, Canada during pregnancy and early postpartum. From March 2011 to December 2012, WLWH ≥ 18 years (n = 77) completed a study instrument measuring independent variables including sociodemographic characteristics, perceived stress, depression symptoms, social isolation, social support and perceived racism in the third trimester and 3, 6 and 12 months postpartum. Multivariable linear regression was employed to explore the relationship between HIV-related stigma and multiple independent variables. HIV-related stigma generally increased from pregnancy to postpartum; however, there were no significant differences in HIV-related stigma across all study time points. In multivariable regression, depression symptoms and perceived racism were significant predictors of overall HIV-related stigma from pregnancy to postpartum. The present analysis contributes to our understanding of HIV-related stigma throughout the pregnancy-motherhood trajectory for WLWH including the interactional relationship between HIV-related stigma and other psychosocial variables, most notably, depression and racism.

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.