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AbstractIntroductionThe meaningful involvement of persons affected by a disease is a unique aspect of the HIV response that places people living with (PLHIV) and those directly affected by HIV (peers) at the centre of the design, development and implementation of service delivery and research and policy making. The principle of greater involvement of PLHIV (GIPA) has and will increasingly ensure equitable access to services and engagement of marginalized groups in the HIV response, and to health services more broadly. This paper describes the history, current place in the HIV response and potential future role of PLHIV and communities in health responses.DiscussionHistorically, the role of communities of PLHIV and peers in service delivery, research and drug development, advocacy, social and political accountability, resource mobilization and social and human rights protection is well documented. Their leadership and engagement have contributed directly to improved outcomes in access to HIV treatment, prevention, support and care services around the world. Their continued and expanded role is especially important for the future success of HIV responses in sub‐Saharan Africa, where the HIV burden remains the greatest. The lessons learned from the leadership and involvement of communities of PLHIV and peers in the HIV response hold value beyond HIV responses. The models and approaches they have efficiently and effectively utilized have relevant applications in addressing shortfalls in health systems in the COVID‐19 era, as well as broader, more integrated health challenges as countries move to develop and operationalize universal health coverage (UHC). However, neither HIV nor other health and development targets can be met if their contributions are not adequately recognized, valued and funded.ConclusionsThe past three decades have demonstrated that communities of PLHIV and their peers are instrumental in sustaining engagement and advocacy for health equity and financing for health and ensuring that the human rights of all people are recognized and upheld. Quality and effective integration of health systems and UHC can be more effectively designed, implemented and sustained with communities of PLHIV and peers at the centre.

IntroductionIn 2010, two global networks of people living with HIV, the International Community of Women Living with HIV (ICW Global) and the Global Network of People living with HIV (GNP +) were invited to review a draft strategic framework for the global scale up of prevention of vertical transmission (PVT) through the primary prevention of HIV and the prevention of unintended pregnancies among women living with HIV. In order to ensure recommendations were based on expressed needs of people living with HIV, GNP+ and ICW Global undertook a consultation amongst people living with HIV which highlighted both facilitators and barriers to prevention services. This commentary summarizes the results of that consultation.DiscussionThe consultation was comprised of an online consultation (moderated chat‐forum with 36 participants from 16 countries), an anonymous online e‐survey (601 respondents from 58 countries), and focus‐group discussions with people living with HIV in Jamaica (27 participants). The consultation highlighted the discrepancies across regions with respect to access to essential packages of PVT services. However, the consultation participants also identified common barriers to access, including a lack of trustworthy sources of information, service providers' attitudes, and gender‐based violence. In addition, participant responses revealed common facilitators of access, including quality counselling on reproductive choices, male involvement, and decentralized services.ConclusionsThe consultation provided some understanding and insight into the participants' experiences with and recommendations for PVT strategies. Participants agreed that successful, comprehensive PVT programming require greater efforts to both prevent primary HIV infection among young women and girls and, in particular, targeted efforts to ensure that women living with HIV and their partners are supported to avoid unintended pregnancies and to have safe, healthy pregnancies instead. In addition to providing the insights into prevention services discussed above, the consultation served as a valuable example of the meaningful involvement of people living with HIV in programming and implementation to ensure that programs are tailored to individuals' needs and to circumvent rights abuses within those settings.

Research and programs for female sex workers (FSWs) tend to focus exclusively on HIV prevention, with little attention paid to how pregnancy affects their lives. We examine the circumstances surrounding pregnancy and childbirth among women selling sex in Ethiopia. In Adama City, researchers asked 30 FSWs aged 18 and older who had ever been pregnant to participate in in‐depth interviews. The women reported on pregnancies experienced both before and after they had begun selling sex. They identified some of the fathers as clients, former partners, and current partners, but they did not know the identities of the other fathers. Missed injections, skipped pills, and inconsistent condom use were causes of unintended pregnancy. Abortion was common, typically with a medication regimen at a facility. Comprehensive sexual and reproductive health services should be provided to women who sell sex, in recognition and support of their need for family planning and their desire to plan whether and when to have children.

AbstractIntroductionDespite the widely recognized ethical and practical benefits of community engagement in HIV research, epistemic injustice persists within the field. Namely, the knowledge held by communities disproportionately affected by HIV is systematically afforded less credibility than that of more privileged academic researchers. In order to illustrate what this looks like in practice, we synthesized the extent of reporting on community engagement within recent high‐impact HIV intervention research papers. However, we also posit that the HIV research sector has the potential to devise and showcase world‐leading examples of equitable research‐community partnerships and suggest actionable key steps to achieving this goal.DiscussionIn the absence of reporting requirements within the publishing process, it is difficult to infer whether and how the community have been consulted in the design, implementation, analysis and/or interpretation of findings. As an illustrative exercise, we offer a rapid synthesis of the extent of reporting on community engagement in HIV research from 2017 to 2019, which highlighted sporadic and very low rates of reporting of community engagement in recent high‐impact HIV intervention studies. Of note is that none of the included studies reported on community engagement through all stages of the research process. There were also discrepancies in how community involvement was reported. We provide three actionable recommendations to enhance reporting on community engagement in HIV research: (1) community‐led organizations, researchers and scientific journals should band together to develop, publish and require adherence to standardized guidelines for reporting on community involvement in HIV research; (2) research funders should (continue to) require details about how relevant communities have been engaged prior to the submission of funding requests; and (3) researchers should take proactive measures to describe their engagement with community organizations in a clear and transparent manner.ConclusionsThere is a clear and urgent need for guidelines that facilitate transparent and consistent reporting on community engagement in HIV intervention research. Without standardized reporting requirements and accountability mechanisms within the research sector, the extent of meaningful community engagement cannot be established and may remain a catchphrase rather than reality.