The majority of e-survey participants reported that an essential package of prevention services was available in their countries: voluntary HIV counselling and testing, information on family planning options and maternal health, provision of condoms and other contraceptives, and treatment and care for sexually transmitted infections. However, there was clear variation by region and challenges in accessing services despite availability. From the perspective of participants, the reasons for the difference in availability included: uneven geographical distribution of services within countries (service concentration in urban areas and under-coverage in rural areas), socio-cultural factors, and the absence of a supportive legal and policy environment. In addition, participants consistently noted that users of existing programmes were challenged in accessing services due to cost issues and travel time to facilities.
The Jamaican focus group discussions revealed substantial knowledge gaps, even though at least two-thirds of the women had participated in a prevention programme at some point. Many were not familiar with how programmes were actually rolled-out, and few were able to describe correctly modes of vertical HIV transmission or how prevention of such transmission occurs. This was largely attributed to healthcare workers spending insufficient time to educate their clients. Participants described PVT programmes that followed different guidelines and used different models, which resulted in variations in quality as well as confusion amongst PVT programme recipients of what was prescribed practice according to adopted guidelines. Participants reported that sexuality and contraceptive options were not discussed on a routine basis. Consequently women felt rarely able to make informed decisions about their sex lives, with respect to primary prevention and prevention of unwanted pregnancy. Additionally, some women reported that they were dissuaded from even the consideration of having children and some were forcibly sterilized.
In the e-consultation, perceptions that participants and peer women living with HIV had insufficient PVT knowledge were partly attributed to conflicting messages delivered by service providers, for instance, regarding advice on breastfeeding. Participants felt that information from internet sources and second-hand knowledge of HIV and reproductive health often led to misinformation within communities. The participants emphasized a demand for trustworthy sources of information and stated that clinics, providers, state-sponsored public health messaging, and trained peers are examples of such sources currently available. Providers were generally seen as an important yet under-utilized primary source of information. Participants recommended not only improving oral communications, but producing take-home leaflets in local languages and using simple plain images to allow women to share information with their partners. Support groups were also mentioned as trustworthy sources of information and referral systems, while at the same time providing psychosocial support and ongoing support for health and wellbeing.
Among the e-survey respondents, a striking two-thirds had experienced stigma in the healthcare settings with equal gender distribution. Healthcare workers’ attitude towards people living with HIV was identified as the single most important barrier to accessing PVT services. Healthcare worker's negative attitudes were also perceived as threatening safe conception by more than half of respondents, both men and women, who felt that women living with HIV and their partners did not have enough support to conceive safely. In the e-survey, one fifth of participants, men and women, reported that they had been pressured by a healthcare worker to take a sexual and reproductive health (SRH) decision at least once, and around one in eight participants reported that they had been pressured more often. This included calls to abstain from sex, undergo tubal ligation or hysterectomy, have an abortion, and/or use a condom without access to any other family planning option. One respondent reported having been refused assistance at her delivery. Postings in the e-consultation described situations in which individuals had lost trust in providers and feared to visit services again because of providers’ stigmatizing attitudes.
A consistent finding across all consultations related to breaches of confidentiality. Over half of all e-survey respondents reported that their right to keep health information confidential had been violated at least once. Participants in the e-consultation and focus group discussions echoed reports of these violations.
Across all consultations, gender-based violence emerged as a barrier to accessing PVT services. Less than half of the male and female e-survey participants believed that women in their countries could assert the right to be free from sexual pressure or violence. Participants viewed the threat of violence as a barrier to women disclosing their HIV status to partners and women accessing voluntary counselling and testing (VCT) and family planning services. Women fearing violence were also believed to be less able to exert control over their fertility and to negotiate safer sex. In addition, it was recognized that women who knew their status and feared disclosure could not ask for partner support to access HIV-specific prenatal care, they were seen as less likely to adhere to antiretroviral medication, and as more likely to resort to mixed feeding practices to avoid disclosure. Participants from the e-consultation agreed that counselling should avoid inappropriately pressuring a woman to disclose to her partner and that healthcare workers should receive training to be able to recognize the signs of potential violence. Such training should also increase providers’ ability to identify the role that violence or the threat of violence plays in women's decision-taking.