Valerie Nicholson

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

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).

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.

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 Womens Sexual and Reproductive Health Cohort Study (CHIWOS), we explored HIV-positive womens 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.

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).

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.

‘It’s a very isolating world’: the journey to HIV care for women living with HIV in British Columbia, Canada

Abstract HIV health services research conventionally defines place in terms of proximity to care. However, understandings of place must also include the social spaces that women living with HIV (WLWH) occupy which shape their experience of health and access to care. Drawing on focus group data from the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study, we explored how 28 WLWH navigate geographic place and social space in attempting to access HIV-related healthcare within and across a range of urban to rural localities in British Columbia (BC), Canada. We describe how existing services, even if physically close, can be socially marginalizing as women confront HIV stigma, racism, and classism, which operate to exclude women from the places and spaces they must access for care. We also emphasize how women enact ‘geographies of resistance’ and succeed in carving out their own safe options for care and support. Finally, we share recommendations identified by women themselves towards developing local and community-driven ‘geographies of change’ that support the health and healing of diverse communities of WLWH. Our findings stress the urgent need to acknowledge and redress socio-spatial barriers to care and to work with WLWH to co-create a therapeutic landscape that reflects women’s diverse identities, localities, emotions, and experiences.

Health-related quality-of-life and receipt of women-centered HIV care among women living with HIV in Canada

ABSTRACT We measured health-related quality of life (HRQOL) using the SF-12 among women living with HIV (WLWH) in Canada between August 2013 and May 2015. We investigated differences by perceived receipt of women-centered HIV care (WCHC), assessed using an evidence-based definition with a 5-point Likert item: “Overall, I think that the care I have received from my HIV clinic in the last year has been women-centered” (dichotomized into agree vs. disagree/neutral). Of 1308 participants, 26.3 percent were from British Columbia, 48.2 percent from Ontario, and 25.5 percent from Québec. The median age was 43 years (interquartile range = 36–51). Most (42.2 percent) were White, 29.4 percent African/Caribbean/Black, and 21.0 percent Indigenous. Overall, 53.4 percent perceived having received WCHC. Mean physical and mental HRQOL scores were 43.8 (standard deviation [SD] = 14.4) and 41.7 (SD = 14.2), respectively. Women perceiving having received WCHC had higher mean physical (44.7; SD = 14.0) and mental (43.7; SD = 14.1) HRQOL scores than those not perceiving having received WCHC (42.9; SD = 14.8 and 39.5; SD = 14.0, respectively; p < .001). In multivariable linear regression, perceived WCHC was associated with higher mental (β = 3.48; 95 percent confidence interval: 1.90, 5.06) but not physical HRQOL. Improving HRQOL among Canadian WLWH, which was lower than general population estimates, is needed, including examining the potential of WCHC as an effective model of clinical care.

Condomless Sex Among Virally Suppressed Women With Hiv With Regular Hiv-serodiscordant Sexual Partners in the Era of Treatment as Prevention

Background: Sexual HIV transmission does not occur with sustained undetectable viral load (VL) on antiretroviral therapy (ART). Awareness of ART prevention benefits and its influence on condom use among women with HIV (WWH) remain unexplored. We estimated prevalence and correlates of condomless sex with regular HIV-serodiscordant partners among WWH with undetectable VL on ART. Methods: We used baseline questionnaire data from the community-based longitudinal Canadian HIV Womens Sexual and Reproductive Health Cohort Study (CHIWOS). We included WWH self-reporting vaginal/anal sex with ≥1 HIV-negative/unknown status regular partner within 6 months, and undetectable VL (<50 copies/mL) on ART. We excluded participants exclusively reporting female partners or missing condom-use data. Condomless sex was defined as <100% condom use within 6 months. The primary explanatory variable was awareness of ART prevention benefits. Logistic regression identified factors independently associated with condomless sex. Results: Of 271 participants (19% of the CHIWOS cohort), median age was 41 (interquartile range: 34–47), 51% were in a relationship, 55% reported condomless sex, and 75% were aware of ART prevention benefits. Among women aware, 63% reported condomless sex compared with 32% of women not aware (P < 0.001). Factors independently associated with condomless sex included being aware of ART prevention benefits (adjusted odds ratio: 4.08; 95% confidence interval: 2.04 to 8.16), white ethnicity, ≥high-school education, residing in British Columbia, and being in a relationship. Conclusions: Virally suppressed women aware of ART prevention benefits had 4-fold greater odds of condomless sex. Advancing safer sex discussions beyond condoms is critical to support women in regular serodiscordant partnerships to realize options for safe and satisfying sexuality in the Treatment-as-Prevention era.

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.

The importance of sex in the lives of women living with HIV: A critical quantitative analysis

ABSTRACT The authors explored the importance of sex for 1,289 women living with HIV in Canada. Approximately half of women viewed sex as “very” (19.6%) or “somewhat” important (32.3%) and the remaining reported “neither important or unimportant” (22.0%), “somewhat unimportant” (5.4%), or “not at all important” (20.1%). Women who had a regular sex partner, identified as African, Caribbean, or Black, were more educated, believed HIV treatment prevents transmission, or had better physical health-related quality-of-life reported greater importance of sex, whereas those who were older, used illicit drugs, or experienced violence in adulthood reported lesser importance. Findings underscore the diversity of womens perspectives within the context of their lives.