"HIV has taught us that you can survive anything": findings from auto-ethnographic video diaries exploring resilience among people living with HIV during the Covid pandemic in five countries.

This study aimed to elucidate the intrinsic and extrinsic resilience resources among people living with HIV (PLWH) during the Covid pandemic. Autoethnographic video diaries from 29 PLWH from Argentina, UK, Philippines, Zimbabwe, and Trinidad and Tobago were included. Data were thematically analysed and validated with community partners and a video was co-produced. PLWH displayed a readiness to adopt healthy behaviours and engage in optimistic and constructive thinking about the future. Hobbies and daily activities, supportive relationships with peers living with HIV, family and friends, opportunities to mobilise and contribute to their communities in meaningful ways, supportive healthcare providers and reliable access to antiretroviral treatment helped foster psychological resilience among PLWH. The extrinsic resilience resources also supported positive physical health outcomes among PLWH through improved medication adherence.

Digital health and human rights of young adults in Ghana, Kenya and Vietnam: a qualitative participatory action research study.

INTRODUCTION: Digital health offers the potential to strengthen health systems in low- and middle-income countries. However, experts have warned about threats to human rights. METHODS: We used qualitative methods to investigate how young adults in Ghana, Kenya and Vietnam use their mobile phones to access online health information and peer support, and what they see as the effect on their human rights. We applied a transnational participatory action research approach. Global and national networks of people living with HIV, AIDS activists, young adults and human rights lawyers participated in study design, desk review, digital ethnography, focus group discussions, key informant interviews and qualitative analysis. RESULTS: We interviewed 174 young adults ages 18-30 in 24 focus groups in 7 cities in Ghana, Kenya and Vietnam, and held 36 key informant interviews with national and international stakeholders. Young adults reported predominantly using Google, social media and social chat groups for health information. They emphasised reliance on trusted peer networks, and the role of social media health champions. However, gender inequalities, class, education and geography create barriers to online access. Young adults also disclosed harms linked to seeking health information online. Some described anxiety about phone dependence and risk of surveillance. They called for a greater voice in digital governance. CONCLUSION: National health officials should invest in young adults' digital empowerment, and engage them in policy to address benefits and risks of digital health. Governments should cooperate to demand regulation of social media and web platforms to uphold the right to health.

Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement.

INTRODUCTION: Despite 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. DISCUSSION: In 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. CONCLUSIONS: There 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.

Consensus statement on the role of health systems in advancing the long-term well-being of people living with HIV.

Health systems have improved their abilities to identify, diagnose, treat and, increasingly, achieve viral suppression among people living with HIV (PLHIV). Despite these advances, a higher burden of multimorbidity and poorer health-related quality of life are reported by many PLHIV in comparison to people without HIV. Stigma and discrimination further exacerbate these poor outcomes. A global multidisciplinary group of HIV experts developed a consensus statement identifying key issues that health systems must address in order to move beyond the HIV field's longtime emphasis on viral suppression to instead deliver integrated, person-centered healthcare for PLHIV throughout their lives.

The continuing role of communities affected by HIV in sustained engagement in health and rights.

INTRODUCTION: The 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. DISCUSSION: Historically, 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. CONCLUSIONS: The 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.

A Global Research Agenda for Adolescents Living With HIV.

BACKGROUND: Despite growing interest in undertaking research in adolescent HIV, the current pace of interventional research in particular remains very low compared with the needs of adolescents living with HIV (ALHIV). More robust evidence is needed to inform innovative and targeted interventions that bridge research gaps, inform policy, and improve outcomes for adolescents. A global research prioritization exercise was undertaken by WHO and CIPHER to focus efforts on priority research in the context of diminishing resources. METHODS: The Child Health and Nutrition Research Initiative (CHNRI) methodology was adapted and used. Outcomes were reviewed by an expert group and 5 priority themes identified for testing, treatment, and service delivery, accounting for existing policies, published literature, and ongoing research. RESULTS: A total of 986 research questions were submitted by 323 individuals from 67 countries. For HIV testing, priority themes included strategies and interventions to improve access, uptake, and linkage to care, and self-testing, particularly for key populations. For treatment, priorities included strategies to monitor and improve adherence, novel drug delivery systems, preventions and management of coinfections, optimal drug sequencing, and short- and long-term outcomes. For service delivery, priorities included service delivery models across the cascade, strategies to improve retention in care and sexual and reproductive health, support for pregnant ALHIV, and the provision of psychosocial support. CONCLUSIONS: This prioritized research agenda assists in focusing future research in ALHIV and will help to fill critical knowledge gaps. Key stakeholders, donors, program managers, and researchers should all support these priority questions and themes to collaboratively drive the adolescent HIV research agenda forward.

Pregnancy Experiences of Female Sex Workers in Adama City, Ethiopia: Complexity of Partner Relationships and Pregnancy Intentions.

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.

Increasing Uptake of HIV, Sexually Transmitted Infection, and Family Planning Services, and Reducing HIV-Related Risk Behaviors Among Youth Living With HIV in Uganda.

PURPOSE: To address barriers to care for youth living with HIV (YLHIV), the Link Up project implemented a peer-led intervention model that provided a comprehensive package of HIV and sexual and reproductive health and rights services through community-based peer support groups for YLHIV. Peer educators delivered targeted counseling and health education, and referred YLHIV to antiretroviral therapy (ART), and reproductive health services that were available at youth-oriented sexual and reproductive health and rights facilities. METHODS: At baseline (October to November 2014), 37 peer support groups for YLHIV were established in Luwero and Nakasongola districts. During this same time period, we recruited a cohort of 473 support group members, aged 15-24 years. After a 9-month intervention period (January to September 2015), we completed the end-line survey with 350 members of the original cohort. Multivariate logistic regression analysis applied to longitudinal data was used to assess changes in key outcomes from baseline to end line. RESULTS: Multivariate analyses showed significant increases at end line, compared with baseline, in self-efficacy (adjusted odds ratio [AOR]: 1.8 [1.3-2.6]), comprehensive HIV knowledge [AOR: 1.8 [1.3-2.6]), HIV disclosure (AOR: 1.6 [1.01-2.6]), condom use at last sex (AOR: 1.7 [1.2-2.5]), sexually transmitted infection uptake (AOR: 2.1 [1.5-2.9]), ART uptake (AOR: 2.5 [1.6-4.0]), ART adherence (AOR: 2.5 [1.3-4.9]), CD4 testing (AOR: 2.4 [1.5-3.6]), and current use of a modern contraceptive method (AOR: 1.7 [1.1-2.7]). CONCLUSIONS: Link Up's intervention strategy likely contributed to observed increases in self-efficacy, knowledge of HIV, condom use, HIV disclosure ART utilization and adherence, CD4 testing, STI testing uptake, and use of modern family planning methods. This model shows promise and should be adapted for use among YLHIV in similar settings and evaluated further.

Linking Sexual and Reproductive Health and Rights and HIV Services for Young People: The Link Up Project.

Sexual health and access to services are a pressing need for young people. This article introduces Link Up, a 3-year project in three African and two Asian countries, to enable and scale up access to integrated HIV services and sexual and reproductive health and rights for marginalized young people. The young people we worked with in this project included young men who have sex with men, young sex workers, young people who use drugs, young transgender people, young homeless people, and other vulnerable young people. The research and programmatic activities of Link Up, as illustrated in this Supplement, have highlighted the importance of recognizing and engaging with diversity among young people to improve access to services and outcomes protecting their health and human rights.

Leadership and Innovation-Listening to and Learning From Young People in Burundi.

This commentary describes young people's leadership from the perspective of a youth-led organization in the Link Up project in Burundi, Réseau National des Jeunes vivant avec le VIH. It describes processes that enable young people to guide, influence, deliver, and improve health service provision; the challenges faced by Réseau National des Jeunes vivant avec le VIH and how they are addressing these challenges.

Community voices: barriers and opportunities for programmes to successfully prevent vertical transmission of HIV identified through consultations among people living with HIV.

INTRODUCTION: In 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. DISCUSSION: The 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. CONCLUSIONS: The 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.

'It [HIV] is part of the relationship': exploring communication among HIV-serodiscordant couples in South Africa and Tanzania.

In many sub-Saharan African countries, a high proportion of people living with HIV are in long-term serodiscordant relationships. This paper explores how HIV serodiscordance shapes communication among couples in long-term HIV-serodiscordant relationships. A total of 36 couples were purposively recruited through healthcare providers and civil society organisations in South Africa (26) and Tanzania (10). We explored couples' portrayal of living in a serodiscordant relationship by conducting semi-structured interviews with each partner separately, followed by a joint interview with both partners. Using an adaptation of Persson's model on sero-silence and sero-sharing, we categorised coping style as 'sero-silent' if partners reported that they did not talk much with each other about issues related to their serodiscordant status or as 'sero-sharing' if they portrayed HIV as being an issue which they dealt with together. Some couples exhibited features of both coping styles and, at times, partners differed in their ways of coping.

Sexual relations and childbearing decisions of HIV-discordant couples: an exploratory study in South Africa and Tanzania.

This article reports on the influence of HIV on sexual relations and childbearing decisions of 36 HIV-discordant couples, 26 in South Africa and 10 in Tanzania, recruited into an exploratory study through hospital antiretroviral treatment clinics and civil society organisations working with people living with HIV. Self-administered questionnaires were used to obtain social and demographic information, while couples' sexual relations and childbearing decisions were explored through in-depth, semi-structured individual and couple interviews. The majority of the HIV-positive partners were women, who were on antiretroviral treatment. Almost one-third of South African respondents and half of those in Tanzania reported experiences of tension related to HIV-discordance, while more than half of the South Africans and almost three-quarters of the Tanzanians reported that intimacy had been affected by their discordant status. Those without children were more likely to desire children (17/23) than those who already had children (16/44), although this desire was influenced by fear of HIV transmission to the negative partner and medical professional advice. The study points to the need for targeted information for HIV discordant couples, as well as couple counselling and support services.