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.