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The Problematization of Sexuality among Women Living with HIV and a New Feminist Approach for Understanding and Enhancing Women’s Sexual Lives

Authors:
Allison Carter at UNSW Sydney
Allison Carter
Saara Greene at McMaster University
Saara Greene
Deborah Money
Deborah Money
Deborah Money
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Margarite Sanchez
Margarite Sanchez
Margarite Sanchez
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Abstract

In the context of HIV, women’s sexual rights and sexual autonomy are important but frequently overlooked and violated. Guided by community voices, feminist theories, and qualitative empirical research, we reviewed two decades of global quantitative research on sexuality among women living with HIV. In the 32 studies we found, conducted in 25 countries and composed mostly of cis-gender heterosexual women, sexuality was narrowly constructed as sexual behaviours involving risk (namely, penetration) and physiological dysfunctions relating to HIV illness, with far less attention given to the fullness of sexual lives in context, including more positive and rewarding experiences such as satisfaction and pleasure. Findings suggest that women experience declines in sexual activity, function, satisfaction, and pleasure following HIV diagnosis, at least for some period. The extent of such declines, however, is varied, with numerous contextual forces shaping women’s sexual well-being. Clinical markers of HIV (e.g., viral load, CD4 cell count) poorly predicted sexual outcomes, interrupting widely held assumptions about sexuality for women with HIV. Instead, the effects of HIV-related stigma intersecting with inequities related to trauma, violence, intimate relations, substance use, poverty, aging, and other social and cultural conditions primarily influenced the ways in which women experienced and enacted their sexuality. However, studies framed through a medical lens tended to pathologize outcomes as individual “problems,” whereas others driven by a public health agenda remained primarily preoccupied with protecting the public from HIV. In light of these findings, we present a new feminist approach for research, policy, and practice toward understanding and enhancing women’s sexual lives—one that affirms sexual diversity; engages deeply with society, politics, and history; and is grounded in women’s sexual rights.
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FEMINIST FORUM REVIEW ARTICLE
The Problematization of Sexuality among Women
Living with HIV and a New Feminist Approach
for Understanding and Enhancing Women’s Sexual Lives
Allison Carter
1,2
&Saara Greene
3
&Deborah Money
4
&Margarite Sanchez
5
&
Kath Webster
1
&Valerie Nicholson
1
&Jessica Whitbread
6,7
&Kate Salters
1,2
&
Sophie Patterson
1
&Mona Loutfy
8,9
&Neora Pick
4,10
&Lori A. Brotto
11
&
Catherine Hankins
12,13
&Angela Kaida
1
Published online: 26 September 2017
#Springer Science+Business Media, LLC 2017, corrected publication November/2017
Abstract In the context of HIV, women’s sexual rights and
sexual autonomy are important but frequently overlooked and
violated. Guided by community voices, feminist theories, and
qualitative empirical research, we reviewed two decades of glob-
al quantitative research on sexuality among women living with
HIV. In the 32 studies we found, conducted in 25 countries and
composed mostly of cis-gender heterosexual women, sexuality
was narrowly constructed as sexual behaviours involving risk
(namely, penetration) and physiological dysfunctions relating to
HIV illness, with far less attention given to the fullness of sexual
lives in context, including more positive and rewarding experi-
ences such as satisfaction and pleasure. Findings suggest that
women experience declines in sexual activity, function, satisfac-
tion, and pleasure following HIV diagnosis, at least for some
period. The extent of such declines, however, is varied, with
numerous contextual forces shaping women’s sexual well-being.
Clinical markers of HIV (e.g., viral load, CD4 cell count) poorly
predicted sexual outcomes, interrupting widely held assumptions
about sexuality for women with HIV. Instead, the effects of HIV-
related stigma intersecting with inequities related to trauma, vio-
lence, intimate relations, substance use, poverty, aging, and other
social and cultural conditions primarily influenced the ways in
which women experienced and enacted their sexuality. However,
studies framed through a medical lens tended to pathologize
outcomesasindividualBproblems,^whereas others driven by a
public health agenda remained primarily preoccupied with
protecting the public from HIV. In light of these findings, we
present a new feminist approach for research, policy, and practice
Electronic supplementary material The online version of this article
(https://doi.org/10.1007/s11199-017-0826-z) contains supplementary
material, which is available to authorized users.
*Allison Carter
allison_carter@sfu.ca
1
Faculty of Health Sciences, Simon Fraser University, Burnaby, BC,
Canada
2
Epidemiology and Population Health Program, British Columbia
Centre for Excellence in HIV/AIDS, St. Paul’s Hospital, 608-1081
Burrard Street, Vancouver, BC V6Z 1Y6, Canada
3
School of Social Work,McMaster University, Hamilton, ON, Canada
4
Faculty of Medicine, University of British Columbia,
Vancouver, BC, Canada
5
ViVA, Positive Living Society of British Columbia, Vancouver, BC,
Canada
6
International Community of Women Living with HIV,
Nairobi, Kenya
7
AIDS ACTION NOW, Toronto, ON, Canada
8
Wom e n’s College Research Institute, Women’s College Hospital,
Toronto, Canada
9
Department of Medicine, University of Toronto, Toronto, ON,
Canada
10
Oak Tree Clinic, British Columbia Women’s Hospital and Health
Centre, Vancouver, BC, Canada
11
Department of Obstetrics and Gynecology, Faculty of Medicine,
University of British Columbia, Vancouver, BC, Canada
12
Amsterdam Institute for Global Health and Development,
Department of Global Health, University of Amsterdam,
Amsterdam, Netherlands
13
Department of Epidemiology, Biostatistics, and Occupational Health,
Faculty of Medicine, McGill University, Montreal, QC, Canada
Sex Roles (2017) 77:779–800
DOI 10.1007/s11199-017-0826-z
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
... Women's sexual health in the context of HIV has been pathologized, moralized, medicalized, and stigmatized. 1 Globally, more than 19 million women and girls are living with HIV, 2 including more than 14,500 women in Canada. 3 Women's bodies have been primarily viewed as vectors of disease, 4 constituting a "public health risk" to those they might infect. ...
... side effects of treatment). 1 At the same time, and yet for many years, women have been pushing back against HIV stigma and overcoming obstacles to sexual wellbeing. Research in Canada has shown that many women living with HIV in Canada view sex as an important aspect of their lives 22 and are sexually satisfied, 23 whether sexually active or not. ...
... Conversations about social and relational issues concerning HIV and its impact on women's sexual functioning and psychological wellbeing are much rarer. 1 To address women's unmet needs and inform sexual health promotion as an essential part of caring for women living with HIV, we sought to answer the following research questions in a Canadian cohort: (1) What are the prevalence and types of sexual concerns among women living with HIV?; (2) What level of distress, if any, have these concerns caused?; (3) How do social, relational, structural, and health factors shape patterns of concern and distress?; and (4) What is the frequency of discussions regarding the impact of living with HIV on sexual wellbeing and which sources of information are most effective in helping women cope with their experiences? Based on the existing literature, 1 we hypothesized that a substantial proportion of women living with HIV would report experiencing sexual concerns following their HIV diagnosis and that distress levels would be equally high for emotional concerns as for behavioral concerns. ...
Prevalence and correlates of sexual concerns and associated distress among women living with HIV in Canada
Article
Full-text available
  • Jan 2022
Objectives We assessed the prevalence and correlates of sexual concerns and associated distress among women living with HIV in Canada. Methods We analyzed cross-sectional survey data from the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (2017–2018). Self-identified women living with HIV were asked about sexual concerns post-HIV diagnosis and associated distress (none, mild, moderate, severe). Five areas of concern were assessed, including difficulties related to sexual self-esteem, sexual function, relationships, and emotional and behavioral aspects of sex. Logistic regression analyses identified correlates of reporting any sexual concerns and severe distress about these concerns. Results Of 906 participants (median age 48, Q1–Q3 = 41–55), 596 (65.8%) reported sexual concerns post-HIV diagnosis. We found a high prevalence of concerns related to relationships (43.3%), sexual self-esteem (49.4%), and emotional aspects of sex (45.4%), relative to sexual functioning (38.4%) and behavioral aspects (33.7%). Of those with sexual concerns, 36.7% reported severe distress. Reports of severe distress were the highest for relationship difficulties (32.5%), relative to other areas of concern (21.4%–22.8%). In adjusted analyses, women reporting sexual dissatisfaction and high HIV-related stigma had significantly higher odds of reporting sexual concerns. Conversely, those reporting higher resilience, better mental health, African, Caribbean, and Black identity, and sex as somewhat unimportant, not at all important, or neutral to their lives had lower adjusted odds. Factors associated with severe distress about sexual concerns included older age, body dissatisfaction, sexual dissatisfaction, and high HIV-related stigma, while better mental health and getting support from someone living with HIV were protective. While 84.4% of women had discussed with a provider how viral load impacts transmission risk, only 40.6% had conversations about sexual wellbeing. Conclusion More attention to women’s sexual wellbeing within social and relational contexts is critical to ensure the sexual rights of women living with HIV are upheld.
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... In recent years, increased attention has been paid to issues of intimacy, sexual pleasure, and sexual autonomy among persons with HIV, though the majority of this work has focused on women as well as gay, bisexual, and other MSM, not men who have sex with women or couples. Efforts to move beyond "safer sex" and reduced transmission rates as the only meaningful sexual health outcomes in this population have led to important conversations about the dangers of reducing the sexuality of people with HIV to a public health prevention concern and, relatedly, the importance of developing nuanced understandings of intimacy among people with HIV [15]. Guided by feminist perspectives on sexuality, which emphasize intersectionality and address the ways in which women's sexual experiences are tied to societal structures and inequities [16][17][18], researchers have advocated for assessing the sexual health outcomes that are desired by people with HIV and then studying the factors that enable those outcomes, rather than exclusively focusing on HIV prevention goals and other deficit-based analyses [15,[19][20][21][22][23]. ...
... Efforts to move beyond "safer sex" and reduced transmission rates as the only meaningful sexual health outcomes in this population have led to important conversations about the dangers of reducing the sexuality of people with HIV to a public health prevention concern and, relatedly, the importance of developing nuanced understandings of intimacy among people with HIV [15]. Guided by feminist perspectives on sexuality, which emphasize intersectionality and address the ways in which women's sexual experiences are tied to societal structures and inequities [16][17][18], researchers have advocated for assessing the sexual health outcomes that are desired by people with HIV and then studying the factors that enable those outcomes, rather than exclusively focusing on HIV prevention goals and other deficit-based analyses [15,[19][20][21][22][23]. Though a few studies have addressed these issues in MWH who have sex with men [24][25][26], there is a notable dearth of information on intimacy and pleasure among MWH who have sex with women, particularly around conception. ...
Sexual and Relationship Benefits of a Safer Conception Intervention Among Men with HIV Who Seek to Have Children with Serodifferent Partners in Uganda
Article
Full-text available
  • Jun 2022
  • AIDS BEHAV
Many men with HIV (MWH) in Uganda desire children, yet seldom receive reproductive counseling related to HIV care. Because men are under engaged in safer conception programming, they miss opportunities to reap the benefits of these programs. The objective of this sub-analysis was to explore the relationship and intimacy benefits of integrating safer conception counseling and strategies into HIV care, an emergent theme from exit interviews with men who participated in a pilot safer conception program and their partners. Twenty interviews were conducted with MWH who desired a child in the next year with an HIV-uninfected/status unknown female partner, and separate interviews were conducted with female partners (n = 20); of the 40 interviews, 28 were completed by both members of a couple. Interviews explored experiences participating in The Healthy Families program, which offered MWH safer conception counseling and access to specific strategies. Data were analyzed using thematic analysis. Three major subthemes or “pathways” to the relationship and intimacy benefits associated with participation in the program emerged: (1) improved dyadic communication; (2) joint decision-making and power equity in the context of reproduction; and (3) increased sexual and relational intimacy, driven by reduced fear of HIV transmission and relationship dissolution. These data suggest that the intervention not only helped couples realize their reproductive goals; it also improved relationship dynamics and facilitated intimacy, strengthening partnerships and reducing fears of separation. Directly addressing these benefits with MWH and their partners may increase engagement with HIV prevention strategies for conception.
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... 10) that span physical, individual, and societal perspectives [9] and are necessary for a comprehensive evaluation of the experience of living with HIV and for improving associated care, treatment and support. Given the above, receiving an HIV diagnosis represents a vitally challenging and complex situation, not only because of the medical implications but also because of the interpersonal and social implications associated with it, which can lead to traumatic experiences with profound consequences in the intimate and sexual spheres [10,11]. Studies on the social implications of HIV throughout the history of the disease have focused primarily on the individual and, in particular, on the coping mechanisms and stigma associated with living with HIV [12]. ...
... This work was possible because it focused on delving deeper into the issue of sexuality through private and credible interviews conducted according to ethical standards. Despite some similarities to the findings of previous studies [10], this study adds a global perspective of the subjective experience of sexuality. It includes several elements that have not been explored as a whole until now (e.g., the role of sexuality, sexual satisfaction, stigma, self-care, well-being). ...
An Initial Look into the Sexuality and Well-Being of Women Living with HIV: Making the Invisible Visible
Article
Full-text available
  • Sep 2021
  • SEX DISABIL
This article focuses on the stories of women living with HIV concerning sexuality and well-being. Their stories counter the dominant perception of women's sexuality and challenge the social norms shaping their lives. Ten women between the ages of 28 and 55 were interviewed. At the interview time, five of the women were unemployed and one retired, four had a partner, and five had children. The semi-structured interviews were conducted following a face-to-face format in which the sex-affective area was explored, examining its relevance, the women's satisfaction, the difficulties they encountered, and the impact on their well-being. The results reflect the diversity of their experiences and the subordinate position they were in and their difficulties in meeting their sexual needs and achieving optimal levels of well-being. The data also reveals the status accorded to being a woman and being HIV-positive as factors affecting her sexual experience, as well as the difficulties she faced in obtaining satisfaction or care. Finally, this paper emphasizes the need to explore the obstacles in relation to living with HIV, including gender and sexuality, all of which must be taken into account in policy implementation and social policymaking.
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... 9,[12][13][14] This manifestation of the intersectionality of HIV stigma can result in poorer outcomes, including those related to HIV treatment, care, and support. [10][11][12][15][16][17][18] Moreover, although the discourse of 'undetectable viral loads' may be transformative for some, enabling people to enjoy sexual intimacy, safely conceive, or breastfeed their babies without anxiety or fear, 19 this HIV risk prevention and education strategy may also operate to exclude and marginalise others, by continuing to medicalise, control, and discipline 5,20,21 bodies that never reach or eventually lose the 'U status'. The worry about one's 'U status' can put incredible pressure on women for zero transmission to others and override their own health needs and priorities, including access to sexual pleasure and safety, particularly in social, cultural, and historical contexts in which revealing a U=U status may incite violence. ...
‘HIV made me fabulous’: a qualitative analysis of embodied storytelling in film to address stigma, further understandings of U=U and advance gender equity
Article
  • Jun 2023
Background: Even with the Undetectable equals Untransmittable campaign (U=U) campaign, women living with HIV continue to experience intersecting forms of stigma. We explored how the somatic experiences of viewing a film about U=U and women could help individuals gain deeper understandings of HIV and alter learned prejudices. Methods: HIV Made Me Fabulous is a film that utilises embodied storytelling to tell the story of a trans woman living through social and historical traumas of HIV. Four online film screenings and focus group discussions took place between June 2020 and June 2021, with participants attending from Canada, Australia, South Africa, Kenya, Zimbabwe and India. Two sessions were held with women living with HIV (n=16) and two with HIV-negative individuals (n=12). Transcripts were analysed via thematic analysis using Lafrenière and Cox's framework to assess its impact. Results: Participants experienced strong, diverse emotional responses and sometimes physical effects from viewing the film. These somatic experiences furthered engagement with key messages in the film, including U=U, intersectional identities, and impacts of patriarchal systems. Women living with HIV commented on unique gendered risks experienced during disclosure, and the pressures of reaching an undetectable viral load. Women also commented how the film resulted in deeper reflection of their deservingness of pleasure. Regardless of HIV status, participants expressed motivation towards influencing change that included addressing biases and sharing U=U with others. Conclusions: Embodied storytelling in film is an effective method to counter both intra- and inter-personal HIV-related stigma by provoking responses that enhance compassion for oneself and others.
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... 4 Satisfaction with sexual life, is an important factor of health-related quality of life and this needs to be addressed in clinical care. 5,6 Sexual satisfaction derives from the positive aspects of individual sexual experience and sexual relationships 7 and can be influenced by biological, psychological and even legal factors. 8 A recent study of people living with HIV in Sweden found that dissatisfaction with sexual life was associated with lower levels of self-reported quality of life. ...
Sexual satisfaction and its associations with patient-reported outcomes in a cohort of women living with human immunodeficiency virus in Sweden
Article
Full-text available
  • May 2022
Background: Sexual satisfaction is an important dimension of health-related quality of life that needs to be addressed. Various factors may influence sexual satisfaction in women living with HIV (WLHIV); however, research in this area is limited. The aim of this study was to investigate patients’ self-reported sexual satisfaction and its associations with patient-reported outcomes in WLHIV in Sweden. Methods: Data was retrieved from the InfCareHIV registry for the years 2011–2016. The registry includes a self-reported validated 9-item health questionnaire to assess patient-reported outcomes, side effects and adherence. In total, 1292 WLHIV aged ≥18 years were included, corresponding to 42.8% of the female Swedish InfCareHIV cohort 2011–2016. A total of 2444 questionnaires were included in the study. The patient-reported outcomes used were satisfaction with physical health and psychological health, sexual satisfaction, and experiencing side effects from HIV-medication. Associations were tested in univariable and multivariable models. Results: The study shows that there was a significant association between sexual satisfaction and satisfaction with psychological health ( p ≤ 0.0001). There was a lower probability of reporting sexual satisfaction in women who were of an older age when they received an HIV-diagnosis ( p = 0.033), who had lived for more years with HIV ( p = 0.0004), or who had experienced side effects ( p = 0.028). Conclusions: This national register-based study identified that sexual satisfaction in WLHIV is associated with psychological health and with having experienced side-effects. Patient-reported outcomes can provide valuable information so that the care of WLHIV covers all aspects of health and supports sexual satisfaction, which is an important part of quality of life.
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... 7,14 Among many specific examples, public health has played a central role in addressing violence and discrimination linked to sexuality among people living with HIV. 15 With regard to the pillar of sexual justice, we propose trauma-informed, sex positive public health practices as a specific tool for enacting social justice. This practice implies restorative approaches that acknowledge and address adverse sexual experiences, trauma that resonates through the life course, and the effects on sexual wellbeing. ...
What is sexual wellbeing and why does it matter for public health?
Article
Full-text available
  • Jun 2021
Sexual health has provided a guiding framework for addressing sexuality in public health for several decades. Although the WHO definition of sexual health is revolutionary in acknowledging positive sexuality, public health approaches remain focused on risk and adverse outcomes. The long-standing conflation of sexual health and sexual wellbeing has affected our ability to address everyday sexual issues. This Viewpoint provides a way forward to resolve this impasse. We propose sexual wellbeing as a distinct and revolutionary concept that can be operationalised as a seven-domain model. We situate sexual wellbeing alongside sexual health, sexual justice, and sexual pleasure as one of four pillars of public health enquiry. We argue that sexual wellbeing is imperative to public health as a marker of health equity, a meaningful population indicator of wellbeing, a means to capture population trends distinct from sexual health, and an opportunity to refocus the ethics, form, and practices of public health.
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... For women living with HIV, structural barriers such as poverty, HIV-related stigma, and violence can also impose challenges for wellbeing in relation to sexuality and the period of pregnancy and childbirth [12]. Clinical markers such as HIV RNA seem to be insufficient predictors of sexual health and wellbeing during pregnancy and childbirth; instead, the effects of HIV-related stigma together with gender inequities, intimate relations, aging, and other social and cultural conditions greatly influence how women living with HIV experience and enact their sexuality [13]. ...
Supportive conditions for sexual and perinatal wellbeing in women living with HIV in Sweden: a Phenomenological Study
Article
Full-text available
  • May 2021
  • Sex Reprod Healthc
Objectives Women living with HIV have specific needs regarding sexuality, pregnancy, and childbirth. However, there is lack of knowledge about how these needs can be met. The aim of this study was to identify supportive conditions for sexual and perinatal wellbeing in women living with HIV in Sweden. Methods A phenomenological reflective lifeworld research approach was used. Transcribed interviews with 18 women living with HIV in Sweden were analyzed focusing on the meanings of the study phenomenon. Results When living with HIV, “feeling safe with oneself and in relationships with others” is essential for sexual and perinatal wellbeing. This is constituted by having good overall health, being in a caring context, having access to high quality information about HIV, and being ensured the same rights as other women. Conclusions The study shows that women living with HIV have specific needs for the support of their sexual and perinatal wellbeing. This knowledge can be used by all those engaged in HIV care and prevention in order to improve and implement supportive conditions for women living with HIV. It is important that all those involved in the care of women living with HIV constantly update their knowledge about HIV and women’s experiences of living with HIV in order to provide safe arenas and caring contexts that support the wellbeing of these women.
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... While strong, sex-positive activism is flourishing outside academic circles, negative, risk-focused approaches dominate published research about the sexuality of women who are living with HIV, particularly in quantitative work (see Carter et al. [2017] for a review). These studies frequently adopt a biomedical lens to scrutinize physical aspects of sex in the context of HIV-namely, "inactive," "unsafe," or "dysfunctional" sexuality (defined by a lack of vaginal intercourse, non-use of condoms, or low levels of desire, arousal, and orgasm). ...
Radical Pleasure: Feminist Digital Storytelling by, with, and for Women Living with HIV
Article
Full-text available
  • Jan 2021
  • ARCH SEX BEHAV
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.
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Sexual Satisfaction of Midlife Women Living With HIV in Canada: A Prospective Cohort Analysis
Article
  • Apr 2023
Background: Although sexual activity and function decline in older women living with HIV, positive dimensions of sexual health, such as satisfaction, are relatively unexplored. We evaluated prevalence of sexual satisfaction for midlife women with HIV and assessed its relation to women's physical, mental, and socio-structural experiences. Setting: We studied women in the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS) over three survey waves (2013-2018). Methods: We included women living with HIV aged≥45 who reported ever having consensual sex. Sexual satisfaction was assessed using an item from the Sexual Satisfaction Scale for Women and was dichotomized into satisfactory ("completely/very/reasonably satisfactory") and not satisfactory ("not very/not at all satisfactory"). Probable depression was based on CES-D≥10. Multivariable logistic regression and fixed effects models determined correlates of sexual satisfaction. Reasons for sexual inactivity and alternate forms of sexual expression were also explored. Results: Among 508 midlife women, 61% were satisfied with their sexual lives at baseline. Women with probable depression had lower odds of sexual satisfaction than women without (aOR:0.44;95% CI:0.27-0.71) and worsening depressive symptoms over time were associated with poorer sexual satisfaction (p=0.001). Increased sexual activity was associated with higher sexual satisfaction (aOR:2.75;95% CI:1.54-4.91), however, 51% of women reporting sexual satisfaction were sexually inactive. Sexually inactive women engaged in alternate forms of sexual expression such as self-pleasure (37%) and intimate relationships without sex (13%). Conclusion: Midlife women with HIV have high rates of sexual satisfaction, even in the absence of sexual activity. Depressive symptoms were closely associated with sexual dissatisfaction, alerting providers to the importance of screening for depression and sexual health together.
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Body image is a major determinant of sexual dysfunction in stable HIV-infected women
Article
Full-text available
Background Prevalence and factors associated with sexual dysfunction in HIV-positive women are poorly known. Methods This was a cross-sectional study in a cohort of HIV-infected women. Clinically stable women were invited to participate in a female sexual dysfunction (FSD) evaluation with Female Sexual Function Index (FSFI) exploring desire, arousal, lubrication, orgasm, pain and satisfaction. An FSFI score <23 was used for defining FSD. Variables evaluated included body appearance satisfaction, interference of body changes with habits, social life and attitudinal aspects of body image, health-related quality of life, hormonal assessment, menopause, cumulative exposure to antiretroviral drug classes and immune-virological parameters. Lipodystrophy was defined according to the HIV Outpatient Study definition. Results A total of 185 women completed the FSFI. The mean (±sd) age was 42 years (±5), 27% had CDC stage C, the mean (±sd) CD4⁺ T-cell count was 508 cells/μl (±251) and median HIV RNA was 1.7 log10 copies/ ml (interquartile range 1.7–2.6). Among 161 evaluable patients, 59 (32%) reported FSD. In a multiple linear regression analysis, desire, arousal and satisfaction domains were associated with interference of body changes with habits, social life and attitudinal aspects of body image (β=0.22, 95% confidence interval [CI] 0.06–0.37; β=0.29, 95% CI 0.10–0.48; and β=0.20, 95% CI 0.02–0.38, respectively). Lubrication and orgasm domains were associated with body image satisfaction (β=-0.49, 95% CI -0.88— 0.10 and β=-0.58, 95% CI -1.00—0.16, respectively). No significant associations with sex hormones, CDC stage, CD4⁺ T-cell count, HIV RNA viral load and cumulative exposure to antiretroviral drug classes were found. In women with FSD, severity of self-perceived abdominal fat accumulation showed a trend towards lower FSFI scores (ANOVA P=0.02). Conclusions FSD was highly prevalent in this cohort. Self-perceived body changes was identified as its major determinant.
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Cohort profile: The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS)
Article
Full-text available
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).
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Boyfriends and Booty Calls: Sexual Partnership Patterns Among Canadian Aboriginal Young People
Article
  • Jan 2011
Objectives Sexual partnership patterns, forced sex, and condom non-use can contribute to STI risk, but little is known about these patterns among Aboriginal young people despite elevated STI risk in this group. We describe sexual relationship and condom use patterns among Canadian Aboriginal young people, and how these patterns relate to the socio-structural context as experienced by young people. Methods We use data from in-depth individual interviews conducted in 2004 with 22 young people who reported ever having sex and who selfidentified as Aboriginal in British Columbia, Canada. A thematic analysis is presented. Results Young people described a range of partnership patterns, including ‘on-off’ relationships which could have high rates of partner turnover but could sometimes be viewed as acceptable contexts for pregnancy, precluding condom use. Contextual elements beyond individual control appeared to contribute to these patterns. Migration between geographic locations was linked with risky partnership patterns, especially if it was linked with family instability or substance use problems. Conclusion Sexual health interventions for this group must address partnership patterns in addition to promoting condom use. Survey research into ‘migration’ as a risk factor for STI transmission should consider reasons for migration. Interventions that address both individual level behaviour and the contextual elements that shape behaviour should be developed and tested.
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Prevalence and Correlates of Forced Sex as a Self-Reported Mode of HIV Acquisition Among a Cohort of Women Living With HIV in Canada
Article
  • Jul 2017
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.
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La vida normal: living with HIV in Santo Domingo, Dominican Republic
Article
In this study, we explore how individuals living with HIV in the Dominican Republic strive to live a 'normal' life and the consequences of this pursuit of normalcy. We conducted qualitative in-depth interviews with men (n = 20) and women (n = 20) living with HIV and receiving care at two urban clinics in Santo Domingo. We analysed the data using a combination of narrative analysis and thematic coding. We aimed to identify how fears and/or lived experiences with social rejection and HIV-related stigma and discrimination shaped participants' abilities to maintain social relationships, be economically productive and manage HIV within the context of sexual relationships. Participants used the discourse of una vida normal (a normal life) to frame their response to HIV. This pursuit of normality was driven by the social and economic pressures of living with a chronic condition in a context of HIV-related stigma; trying to keep things 'normal' further added to these pressures. We argue that the normal life discourse fails to recognise the dynamic and complex nature of negotiating this condition and may also create additional burdens for individuals living with HIV that could impact their wellbeing and preventive behaviours.
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'Callous, Cold and Deliberately Duplicitous': Racialization, Immigration and the Representation of HIV Criminalization in Canadian Mainstream Newspapers
Article
  • Jan 2016
This report explores mainstream Canadian newspaper coverage of HIV non-disclosure criminal cases in Canada. It pays particular attention to how defendants’ race and immigration status figure into the newspaper representations of such cases. We empirically enquire into claims that African, Caribbean and Black (ACB) people living with HIV are negatively portrayed and overrepresented in Canadian newspaper stories about HIV non-disclosure cases. Our analysis is based on what, to our knowledge, is the largest data set of news coverage of the issue: a corpus of 1680 English-language Canadian newspaper articles about HIV non-disclosure criminal cases in Canada written between 1 January 1989 and 31 December 2015. Our quantitative and qualitative findings show that Canadian mainstream newspapers are a source of profoundly stigmatizing representations of ACB men living with HIV. For example, Black immigrant men living with HIV are dramatically overemphasized in Canadian mainstream newspaper stories about such cases. While these men account for only 15% of defendants charged they are the focus of 61% of newspaper coverage. Mainstream newspapers rely on forms of language that transfer a long history of exaggerated connections between criminality, race, sex, and otherness to the site of HIV. The result is that ACB men living with HIV are repeatedly represented as dangerous, hypersexual, foreigners who pose a threat to the health and safety of individuals (White women) and, more broadly, the imagined Canadian nation.
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Sexual dysfunction and its determinants among women infected with HIV
Article
Objective: To describe the prevalence of female sexual dysfunction (FSD) and its determinants among women with HIV infection enrolled for care and treatment in an ambulatory care setting. Methods: A questionnaire-based cross-sectional survey was conducted among women attending the HIV clinic of Jos University Teaching Hospital, Nigeria, between March 2013 and February 2014. The self-administered Female Sexual Function Index (FSFI) was used to assess FSD; a score of less than 26.55 indicated FSD. Pearson coefficient was used to assess interdomain correlation, and multiple linear regression was used to identify factors associated with FSD. Results: Among 370 participants, 330 (89.2%, 95% confidence interval [CI] 85.6%-92.2%) had FSD. The overall median FSFI score was 19.2 (interquartile range [IQR] 6.4-23.9). The arousal domain had the lowest subscore (median 2.7, IQR 0.0-3.6). The highest interdomain correlations were between lubrication and orgasm (r=0.87), arousal and lubrication (r=0.84), and arousal and orgasm (r=0.81) domains. Satisfactory health (β=3.34, 95% CI 1.16-5.52) and history of alcohol use (β=2.38, 95% CI 0.28-4.47) were independently associated with FSD. Conclusion: FSD was prevalent among women with HIV infection. Care providers need to routinely address FSD as part of a comprehensive care package in the study setting. This article is protected by copyright. All rights reserved.
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