Experiences and resultant care gaps among women with HIV in Canada: concept mapping the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS) findings.

OBJECTIVES: The community-based, longitudinal, Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS) explored the experiences of women with HIV in Canada over the past decade. CHIWOS' high-impact publications document significant gaps in the provision of healthcare to women with HIV. We used concept mapping to analyse and present a summary of CHIWOS findings on women's experiences navigating these gaps. DESIGN: Concept mapping procedures were performed in two steps between June 2019 and March 2021. First, two reviewers (AY and PM) independently reviewed CHIWOS manuscripts and conference abstracts written before 1 August 2019 to identify main themes and generate individual concept maps. Next, the preliminary results were presented to national experts, including women with HIV, to consolidate findings into visuals summarising the experiences and care gaps of women with HIV in CHIWOS. SETTING: British Columbia, Ontario and Quebec, Canada. PARTICIPANTS: A total of 18 individual CHIWOS team members participated in this study including six lead investigators of CHIWOS and 12 community researchers. RESULTS: Overall, a total of 60 peer-reviewed manuscripts and conference abstracts met the inclusion criteria. Using concept mapping, themes were generated and structured through online meetings. In total, six composite concept maps were co-developed: quality of life, HIV care, psychosocial and mental health, sexual health, reproductive health, and trans women's health. Two summary diagrams were created encompassing the concept map themes, one for all women and one specific to trans women with HIV. Through our analysis, resilience, social support, positive healthy actions and women-centred HIV care were highlighted as strengths leading to well-being for women with HIV. CONCLUSIONS: Concept mapping resulted in a composite summary of 60 peer-reviewed CHIWOS publications. This activity allows for priority setting to optimise care and well-being for women with HIV.

Factors and Priorities Influencing Satisfaction with Care among Women Living with HIV in Canada: A Fuzzy Cognitive Mapping Study.

Engagement along the HIV care cascade in Canada is lower among women compared to men. We used Fuzzy Cognitive Mapping (FCM), a participatory research method, to identify factors influencing satisfaction with HIV care, their causal pathways, and relative importance from the perspective of women living with HIV. Building from a map of factors derived from a mixed-studies review of the literature, 23 women living with HIV in Canada elaborated ten categories influencing their satisfaction with HIV care. The most central and influential category was "feeling safe and supported by clinics and healthcare providers", followed by "accessible and coordinated services" and "healthcare provider expertise". Participants identified factors that captured gendered social and health considerations not previously specified in the literature. These categories included "healthcare that considers women's unique care needs and social contexts", "gynecologic and pregnancy care", and "family and partners included in care." The findings contribute to our understanding of how gender shapes care needs and priorities among women living with HIV.

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.

Help-Seeking to Cope With Experiences of Violence Among Women Living With HIV in Canada.

Using baseline data from a community-collaborative cohort of women living with HIV in Canada, we assessed the prevalence and correlates of help-seeking among 1,057 women who reported experiencing violence in adulthood (≥16 years). After violence, 447 (42%) sought help, while 610 (58%) did not. Frequently accessed supports included health care providers (n = 313, 70%), family/friends (n = 244, 55%), and non-HIV community organizations (n = 235, 53%). All accessed supports were perceived as helpful. Independent correlates of help-seeking included reporting a previous mental health diagnosis, a history of injection drug use, experiencing childhood violence, and experiencing sexism. We discuss considerations for better supporting women who experience violence.

Radical Pleasure: Feminist Digital Storytelling by, with, and for Women Living with HIV.

Despite the fact that HIV can be controlled with medication to undetectable levels where it cannot be passed on, stigmatization of women living with HIV persists. Such stigmatization pivots on stereotypes around sex and sexism and has force in women's lives. Our aim was to create an inspirational resource for women living with HIV regarding sex, relationships, and sexuality: www.lifeandlovewithhiv.ca (launched in July 2018). This paper describes the development and mixed-method evaluation of our first year and a half activities. We situated our work within a participatory arts-based knowledge translation planning framework and used multiple data sources (Google Analytics, stories and comments on the website, team reflections over multiple meetings) to report on interim outcomes and impacts. In our first 1.5 years, we recruited and mentored 12 women living with HIV from around the world (Canada, Australia, New Zealand, Kenya, South Africa, Spain, Nigeria, and the U.S.) to write their own stories, with the support of a mentor/editor, as a way of regaining control of HIV narratives and asserting their right to have pleasurable, fulfilling, and safer sexual lives. Writers published 43 stories about pleasure, orgasm, bodies, identities, trauma, resilience, dating, disclosure, self-love, and motherhood. Our social media community grew to 1600, and our website received approximately 300 visits per month, most by women (70%) and people aged 25-44 years (65%), from more than 50 cities globally, with shifts in use and demographics over time. Qualitative data indicated the power of feminist digital storytelling for opportunity, access, validation, and healing, though not without risks. We offer recommendations to others interested in using arts-based digital methods to advance social equity in sexual health.

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.

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.

Pathways From HIV-Related Stigma to Antiretroviral Therapy Measures in the HIV Care Cascade for Women Living With HIV in Canada.

BACKGROUND: Associations between HIV-related stigma and reduced antiretroviral therapy (ART) adherence are widely established, yet the mechanisms accounting for this relationship are underexplored. There has been less attention to HIV-related stigma and its associations with ART initiation and current ART use. We examined pathways from HIV-related stigma to ART initiation, current ART use, and ART adherence among women living with HIV in Canada. METHODS: We used baseline survey data from a national cohort of women living with HIV in Canada (n = 1425). Structural equation modeling using weighted least squares estimation methods was conducted to test the direct effects of HIV-related stigma dimensions (personalized, negative self-image, and public attitudes) on ART initiation, current ART use, and 90% ART adherence, and indirect effects through depression and HIV disclosure concerns, adjusting for sociodemographic factors. RESULTS: In the final model, the direct paths from personalized stigma to ART initiation (ß = -0.104, P < 0.05) and current ART use (ß = -0.142, P < 0.01), and negative self-image to ART initiation (ß = -0.113, P < 0.01) were significant, accounting for the mediation effects of depression and HIV disclosure concerns. Depression mediated the pathways from personalized stigma to ART adherence, and negative self-image to current ART use and ART adherence. Final model fit indices suggest that the model fit the data well [χ(25) = 90.251, P < 0.001; comparative fit index = 0.945; root-mean-square error of approximation = 0.044]. CONCLUSIONS: HIV-related stigma is associated with reduced likelihood of ART initiation and current ART use, and suboptimal ART adherence. To optimize the benefit of ART among women living with HIV, interventions should reduce HIV-related stigma and address depression.

Breaking the Glass Ceiling: Increasing the Meaningful Involvement of Women Living With HIV/AIDS (MIWA) in the Design and Delivery of HIV/AIDS Services.

The meaningful involvement of women living with HIV/AIDS (MIWA) is a key feature of women-centred HIV care, yet little is known about transforming MIWA from principle to practice. Drawing on focus group data from the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS), we explored HIV-positive women's meaningful involvement in the design and delivery of HIV/AIDS services in British Columbia, Canada. In this article, we highlight the benefits and tensions that emerge as women traverse multiple roles as service users and service providers within their care communities, and the impact this has on their access to care and overall health.

Women-specific HIV/AIDS services: identifying and defining the components of holistic service delivery for women living with HIV/AIDS.

INTRODUCTION: The increasing proportion of women living with HIV has evoked calls for tailored services that respond to women's specific needs. The objective of this investigation was to explore the concept of women-specific HIV/AIDS services to identify and define what key elements underlie this approach to care. METHODS: A comprehensive review was conducted using online databases (CSA Social Service Abstracts, OvidSP, Proquest, Psycinfo, PubMed, CINAHL), augmented with a search for grey literature. In total, 84 articles were retrieved and 30 were included for a full review. Of these 30, 15 were specific to HIV/AIDS, 11 for mental health and addictions and four stemmed from other disciplines. RESULTS AND DISCUSSION: The review demonstrated the absence of a consensual definition of women-specific HIV/AIDS services in the literature. We distilled this concept into its defining features and 12 additional dimensions (1) creating an atmosphere of safety, respect and acceptance; (2) facilitating communication and interaction among peers; (3) involving women in the planning, delivery and evaluation of services; (4) providing self-determination opportunities; (5) providing tailored programming for women; (6) facilitating meaningful access to care through the provision of social and supportive services; (7) facilitating access to women-specific and culturally sensitive information; (8) considering family as the unit of intervention; (9) providing multidisciplinary integration and coordination of a comprehensive array of services; (10) meeting women "where they are"; (11) providing gender-, culture- and HIV-sensitive training to health and social care providers; and (12) conducting gendered HIV/AIDS research. CONCLUSIONS: This review highlights that the concept of women-specific HIV/AIDS services is a complex and multidimensional one that has been shaped by diverse theoretical perspectives. Further research is needed to better understand this emerging concept and ultimately assess the effectiveness of women-specific services on HIV-positive women's health outcomes.