What will it take to achieve the sexual and reproductive health and rights of women living with HIV?

This article outlines progress in realizing the sexual and reproductive health and rights of women and girls living with HIV over the last 30 years from the perspective of women living with HIV. It argues that the HIV response needs to go beyond the bio-medical aspects of HIV to achieve our sexual and reproductive health and rights, and considers relevant Joint United Nations Programme on HIV/AIDS (UNAIDS), World Health Organization, United States President's Emergency Plan for AIDS Relief (PEPFAR), Global Fund and other guidelines, what engagement there has been with women living with HIV and whether guidelines/strategies have been adopted. It has been written by women living with HIV from around the world and a few key supporters. Co-authors have sought to collate and cite materials produced by women living with HIV from around the world, in the first known effort to date to do this, as a convergence of evidence to substantiate the points made in the article. However, as the article also argues, research led by women living with HIV is seldom funded and rarely accepted as evidence. Combined with a lack of meaningful involvement of women living with HIV in others' research on us, this means that formally recognized evidence from women's own perspectives is patchy at best. The article argues that this research gap, combined with the ongoing primacy of conventional research methods and topics that exclude those most affected by issues, and the lack of political will (and sometimes outright opposition) in relation to gender equality and human rights, adversely affect policies and programmes in relation to women's rights. Thus, efforts to achieve an ethical, effective and sustainable response to the pandemic are hindered. The article concludes with a call to action to all key stakeholders.

Development of an international sexual and reproductive health survey instrument: results from a pilot WHO/HRP consultative Delphi process.

Population health surveys are rarely comprehensive in addressing sexual health, and population-representative surveys often lack standardised measures for collecting comparable data across countries. We present a sexual health survey instrument and implementation considerations for population-level sexual health research. The brief, comprehensive sexual health survey and consensus statement was developed via a multi-step process (an open call, a hackathon, and a modified Delphi process). The survey items, domains, entire instruments, and implementation considerations to develop a sexual health survey were solicited via a global crowdsourcing open call. The open call received 175 contributions from 49 countries. Following review of submissions from the open call, 18 finalists and eight facilitators with expertise in sexual health research, especially in low- and middle-income countries (LMICs), were invited to a 3-day hackathon to harmonise a survey instrument. Consensus was achieved through an iterative, modified Delphi process that included three rounds of online surveys. The entire process resulted in a 19-item consensus statement and a brief sexual health survey instrument. This is the first global consensus on a sexual and reproductive health survey instrument that can be used to generate cross-national comparative data in both high-income and LMICs. The inclusive process identified priority domains for improvement and can inform the design of sexual and reproductive health programs and contextually relevant data for comparable research across countries.

Development of the Canadian Women-Centred HIV Care Model Using the Knowledge-to-Action Framework.

In Canada, women make up 25% of the prevalent HIV cases and represent an important population of those living with HIV, as a high proportion are racialized and systemically marginalized; furthermore, many have unmet healthcare needs. Using the knowledge-to-action framework as an implementation science methodology, we developed the "Women-Centred HIV Care" (WCHC) Model to address the needs of women living with HIV. The WCHC Model is depicted in the shape of a house with trauma- and violence-aware care as the "foundation". Person-centred care with attention with attention to social determinants of health and family make up the "first" floor. Women's health (including sexual and reproductive health and rights) and mental and addiction health care are integrated with HIV care, forming the "second" floor. Peer support, leadership, and capacity building make up the "roof". To address the priorities of women living with HIV in all their diversity and across their life course, the WCHC Model should be flexible in its delivery (e.g., single provider, interdisciplinary clinic or multiple providers) and implementation settings (e.g., urban, rural).

On the CUSP: the politics and prospects of scaling social norms change programming.

In the past decades, donors and development actors have been increasingly mindful of the evidence to support long-term, dynamic social norms change. This paper draws lessons and implications on scaling social norms change initiatives for gender equality to prevent violence against women and girls (VAWG) and improve sexual and reproductive health and rights (SRHR), from the Community for Understanding Scale Up (CUSP). CUSP is a group of nine organisations working across four regions with robust experience in developing evidence-based social norms change methodologies and supporting their scale-up across various regions and contexts. More specifically, the paper elicits learning from methodologies and experiences from five CUSP members - GREAT, IMAGE, SASA!, Stepping Stones, and Tostan. The discussion raises political questions around the current donor landscape including those positioned to assume leadership to take such methodologies to scale, and the current evaluation paradigm to measure social norms change at scale. CUSP makes the following recommendations for donors and implementers to scale social norms initiatives effectively and ethically: invest in longer-term programming, ensure fidelity to values of the original programmes, fund women's rights organisations, prioritise accountability to their communities and demands, critically examine the government and marketplace's role in scale, and rethink evaluation approaches to produce evidence that guides scale-up processes and fully represents the voices of activists and communities from the Global South.

Non-specialist psychosocial support interventions for women living with HIV: A systematic review.

Many women living with HIV experience a range of physical, social, and psychological challenges linked to their HIV status. Psychosocial support interventions may help women cope with these challenges and may allow women to make better decisions around their sexual and reproductive health (SRH), yet no reviews have summarized the evidence for the impact of such interventions on well-being and SRH decision-making among women living with HIV. We systematically reviewed the evidence for non-specialist delivered psychosocial support interventions for women living with HIV, which are particularly relevant in low-resource settings. Outcomes of interest included mental, emotional, social well-being and/or quality of life, common mental health disorders, and SRH decision-making. Searching was conducted through four electronic databases and secondary reference screening. Systematic methods were used for screening and data abstraction. Nine articles met the inclusion criteria, showing positive or mixed results for well-being and depressive symptoms indicators. No studies reported on SRH decision-making outcomes. The available evidence suggests that psychosocial support interventions may improve self-esteem, coping and social support, and reduce depression, stress, and perceived stigma. However, evidence is mixed. Most studies placed greater emphasis on instrumental health outcomes to prevent HIV transmission than on the intrinsic well-being and SRH of women living with HIV. Many interventions included women living with HIV in their design and implementation. More research is required to understand the most effective interventions, and their effect on sexual and reproductive health and rights.

Using GRADE as a framework to guide research on the sexual and reproductive health and rights (SRHR) of women living with HIV - methodological opportunities and challenges.

In March 2016, WHO reviewed evidence to develop global recommendations on the sexual and reproductive health and rights (SRHR) of women living with HIV. Systematic reviews and a global survey of women living with HIV informed the guideline development decision-making process. New recommendations covered abortion, Caesarean section, safe disclosure, and empowerment and self-efficacy interventions. Identification of key research gaps is part of the WHO guidelines development process, but consistent methods to do so are lacking. Our method aimed to ensure consistency and comprised the systematic application of a framework based on GRADE (Grading of Recommendations, Assessment, Development and Evaluation) to the process. The framework incorporates the strength and quality rating of recommendations and the priorities reported by women in the survey to inform research prioritisation. For each gap, we also articulated: (1) the most appropriate and robust study design to answer the question; (2) alternative pragmatic designs if the ideal design is not feasible; and (3) the methodological challenges facing researchers through identifying potential biases. We found 12 research gaps and identified five appropriate study designs to address the related questions: (1) Cross-sectional surveys; (2) Qualitative interview-driven studies; (3) Registries; (4) Randomised controlled trials; and (5) Medical record audit. Methodological challenges included selection, recruitment, misclassification, measurement and contextual biases, and confounding. In conclusion, a framework based on GRADE can provide a systematic approach to identifying research gaps from a WHO guideline. Incorporation of the priorities of women living with HIV into the framework systematically ensures that women living with HIV can shape future policy decisions affecting their lives. Implementation science and participatory research are appropriate over-arching approaches to enhance uptake of interventions and to ensure inclusion of women living with HIV at all stages of the research process.

In Women's Eyes: Key Barriers to Women's Access to HIV Treatment and a Rights-Based Approach to their Sustained Well-Being.

There is rightly a huge global effort to enable women living with HIV to have long productive lives, through treatment access. However, many women living with HIV experience violence against women (VAW), in both domestic and health care settings. The ways in which VAW might prevent treatment access and adherence for women has not to date been reviewed coherently at the global level, from women's own perspectives. Meanwhile, funding for global health care, including HIV treatment, is shrinking. To optimize women's health and know how best to optimize facilitators and minimize barriers to access and adherence, especially in this shrinking funding context, we need to understand more about these issues from women's own perspectives. In response, we conducted a three-phase review: (1) a literature review (phase one); (2) focus group discussions and interviews with nearly 200 women living with HIV from 17 countries (phase two); and (3) three country case studies (phase three). The results presented here are based predominantly on women's own experiences and are coherent across all three phases. Recommendations are proposed regarding laws, policies, and programs which are rights-based, gendered, and embrace diversity, to maximize women's voluntary, informed, confidential, and safe access to and adherence to medication, and optimize their long-term sexual and reproductive health.

Ethical, strategic and meaningful involvement of women living with HIV starts at the beginning.

End-user involvement in HIV guidelines development is often little, late or absent. Other disciplines have long advocated 'handing over the stick' (i.e. power and control), as both ethical and strategic. Women HIV activists have called this respectful engagement with, and learning from, communities 'MIWA' (meaningful involvement of women living with HIV and AIDS).

Sexual and reproductive health and human rights of women living with HIV: a global community survey.

OBJECTIVE: To determine the sexual and reproductive health priorities of women living with human immunodeficiency virus (HIV) and to allow the values and preferences of such women to be considered in the development of new guidelines. METHODS: A core team created a global reference group of 14 women living with HIV and together they developed a global community online survey. The survey, which contained mandatory and optional questions, was based on an appreciative enquiry approach in which the life-cycle experiences of women living with HIV were investigated. The same set of questions was also used in focus group discussions led by the global reference group. FINDINGS: The study covered 945 women (832 in the survey and 113 in the focus groups) aged 15-72 years in 94 countries. Among the respondents to the optional survey questions, 89.0% (427/480) feared or had experienced gender-based violence, 56.7% (177/312) had had an unplanned pregnancy, 72.3% (227/314) had received advice on safe conception and 58.8% (489/832) had suffered poor mental health after they had discovered their HIV-positive status. CONCLUSION: The sexual and reproductive health needs and rights of women living with HIV are complex and require a stronger response from the health sector. The online survey placed the voices of women living with HIV at the start of the development of new global guidelines. Although not possible in some contexts and populations, a similar approach would merit replication in the development of guidelines for many other health considerations.

"Violence. Enough already": findings from a global participatory survey among women living with HIV.

INTRODUCTION: Women living with HIV are vulnerable to gender-based violence (GBV) before and after diagnosis, in multiple settings. This study's aim was to explore how GBV is experienced by women living with HIV, how this affects women's sexual and reproductive health (SRH) and human rights (HR), and the implications for policymakers. METHODS: A community-based, participatory, user-led, mixed-methods study was conducted, with women living with HIV from key affected populations. Simple descriptive frequencies were used for quantitative data. Thematic coding of open qualitative responses was performed and validated with key respondents. RESULTS: In total, 945 women living with HIV from 94 countries participated in the study. Eighty-nine percent of 480 respondents to an optional section on GBV reported having experienced or feared violence, either before, since and/or because of their HIV diagnosis. GBV reporting was higher after HIV diagnosis (intimate partner, family/neighbours, community and health settings). Women described a complex and iterative relationship between GBV and HIV occurring throughout their lives, including breaches of confidentiality and lack of SRH choice in healthcare settings, forced/coerced treatments, HR abuses, moralistic and judgemental attitudes (including towards women from key populations), and fear of losing child custody. Respondents recommended healthcare practitioners and policymakers address stigma and discrimination, training, awareness-raising, and HR abuses in healthcare settings. CONCLUSIONS: Respondents reported increased GBV with partners and in families, communities and healthcare settings after their HIV diagnosis and across the life-cycle. Measures of GBV must be sought and monitored, particularly within healthcare settings that should be safe. Respondents offered policymakers a comprehensive range of recommendations to achieve their SRH and HR goals. Global guidance documents and policies are more likely to succeed for the end-users if lived experiences are used.

How does living with HIV impact on women's mental health? Voices from a global survey.

INTRODUCTION: Women living with HIV experience a disproportionate burden of mental health issues. To date, global guidelines contain insufficient guidance on mental health support, particularly regarding perinatal care. The aim of this article is to describe the extent and impact of mental health issues as experienced by women living with HIV on their sexual and reproductive health and human rights (SRH&HR). METHODS: A global, mixed-methods, user-led and designed survey on SRH&HR of women living with HIV was conducted using snowball sampling, containing an optional section exploring mental health issues. Statistical quantitative data analysis included descriptive statistics, correlation and multiple linear regression analysis for the mental health responses. Thematic analysis of open free-text responses was performed for qualitative data. RESULTS: A total of 832 respondents from 94 countries participated in the online survey with 489 responses to the optional mental health section. Of the respondents, 82% reported depression symptoms and 78% rejection. One-fifth reported mental health issues before HIV diagnosis. Respondents reported experiencing a 3.5-fold higher number of mental health issues after diagnosis (8.71 vs 2.48, t[488]=23.00, p<0.001). Nearly half (n=224; 45.8%) had multiple socially disadvantaged identities (SDIs). The number of SDIs was positively correlated with experiencing mental health issues (p<0.05). Women described how mental health issues affected their ability to enjoy their right to sexual and reproductive health and to access services. These included depression, rejection and social exclusion, sleep problems, intersectional stigma, challenges with sexual and intimate relationships, substance use and sexual risk, reproductive health barriers and human rights (HR) violations. Respondents recommended that policymakers and clinicians provide psychological support and counselling, funding for peer support and interventions to challenge gender-based violence and to promote HR. CONCLUSIONS: Interventions addressing intersecting stigmas and any especial impacts of diagnosis during pregnancy are required to ensure women's SRH&HR. Global policy guidelines regarding women living with HIV must incorporate mental health considerations.