Abstract

Objective

To determine the sexual and reproductive health priorities of women living with human immunodeficiency virus (HIV) and so 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 genderbased 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.