"We decided together": a qualitative study about women with HIV navigating infant-feeding decisions with the father of their children.

BACKGROUND: The World Health Organization (WHO) recommends that women with HIV breastfeed for a minimum of one year. In contrast, United Kingdom (UK) guidelines encourage formula feeding, but breastfeeding can be supported under certain circumstances. Infant-feeding decisions often involve personal and social networks. Currently, little research addresses how individuals with HIV in high-income countries navigate infant-feeding decisions with the father of their children. METHODS: Semi-structured remote interviews were conducted with UK-based individuals with a confirmed HIV positive diagnosis who were pregnant or one-year postpartum, and two partners. Using purposive sampling, pregnant and postpartum participants were recruited through HIV NHS clinics and community-based organisations, and where possible, fathers were recruited via them. Data were analysed using thematic analysis and organised using NVivo 12. RESULTS: Of the 36 women interviewed, 28 were postpartum. The majority were of Black African descent (n = 22) and born outside the UK. The key factors in women navigating HIV and infant-feeding discussions with respect to their baby's father were the latter's: (1) awareness of woman's HIV status; (2) relationship with the woman; (3) confidence in infant-feeding decision; (4) support and opinion about woman's infant-feeding intentions. Most women made a joint decision with biological fathers when in a long-term (> one year) relationship with them. Single women tended not to discuss their infant-feeding decision with the father of their child, often for safety reasons. CONCLUSION: Women in ongoing relationships with the father of their child valued their support and opinions regarding infant-feeding. In contrast, single women chose not to involve the father for reasons of privacy and safety. Clinical teams and community-based organisations should support mothers in discussing infant-feeding decisions regardless of relationship status. When appropriate, they should also support discussions with their partners, but remain sensitive to circumstances where this may put women at risk.

Tackling late HIV diagnosis: Lessons from the UK in the COVID-19 era.

INTRODUCTION: Late diagnosis of HIV is associated with increased morbidity and mortality, and an increased risk of non-infectious comorbidities. On a societal level, late diagnosis leads to higher treatment and healthcare costs and is a major driver of HIV transmission. Despite improvements in other areas of the HIV care pathway, late diagnosis remains an individual and public health concern globally. OBJECTIVE: To examine the barriers to HIV testing and highlight successful strategies to improve prompt diagnosis. This review describes the prevalence of late diagnosis in the UK and discusses key factors that contribute to late diagnosis, including the effect of the COVID-19 pandemic. Late HIV diagnosis is lower in the UK than in most other European countries. In this review, pilot projects and ongoing initiatives that have reduced late diagnosis in the UK are highlighted; moreover, further strategies for improving prompt diagnosis are suggested. CONCLUSIONS: Insufficient testing is the fundamental reason for late HIV diagnosis, with societal, systemic, and individual factors all contributing to inadequate testing. Improving access to testing, removing barriers to health-seeking behaviour, and ensuring all people with HIV indicator conditions are promptly tested are key to reducing the rates of late diagnosis globally.

Research priorities in HIV, aging and rehabilitation: building on a framework with the Canada-International HIV and Rehabilitation Research Collaborative.

BACKGROUND: In 2016, the Canada-International HIV and Rehabilitation Research Collaborative established a framework of research priorities in HIV, aging and rehabilitation. Our aim was to review and identify any new emerging priorities from the perspectives of people living with HIV, clinicians, researchers, and representatives from community organizations. METHODS: We conducted a multi-stakeholder international consultation with people living with HIV, researchers, clinicians and representatives of community-based organizations. Stakeholders convened for a one-day Forum in Manchester, United Kingdom (UK) to discuss research priorities via a web-based questionnaire and facilitated discussions. We analyzed data using conventional content analytical techniques and mapped emerging priorities onto the foundational framework. RESULTS: Thirty-five stakeholders from the UK(n = 29), Canada(n = 5) and Ireland(n = 1) attended the Forum, representing persons living with HIV or representatives from community-based organizations(n = 12;34%), researchers or academics(n = 10;28%), service providers(n = 6;17%), clinicians(n = 4;11%); and trainees(n = 4;11%). Five priorities mapped onto the Framework of Research Priorities across three content areas: A-Episodic Health and Disability Aging with HIV (disability, frailty, social participation), B-Rehabilitation Interventions for Healthy Aging across the Lifespan (role, implementation and impact of digital and web-based rehabilitation interventions) and C-Outcome Measurement in HIV and Aging (digital and web-based rehabilitation health technology to measure physical activity). Stakeholders indicated methodological considerations for implementing digital and web-based rehabilitation interventions into research and practice and the importance of knowledge transfer and exchange among the broader community. CONCLUSION: Results highlight the sustained importance of the Framework of Research Priorities and provide further depth and areas of inquiry related to digital and web-based rehabilitation interventions and technology aging with HIV.

Study protocol: the ILANA study - exploring optimal implementation strategies for long-acting antiretroviral therapy to ensure equity in clinical care and policy for women, racially minoritised people and older people living with HIV in the UK - a qualitative multiphase longitudinal study design.

INTRODUCTION: Cabotegravir and rilpivirine (CAB+RPV long-acting (LA)) is recommended as a treatment for HIV-1 allowing people living with HIV to receive 2 monthly injectable treatment, rather than daily pills. Providing injectable therapy in a system designed to provide and manage study participants on oral treatments poses logistical challenges namely how resources are used to accommodate patient preference within constrained health economies with capacity limitations. In this pragmatic multicentre study, we aim to understand the implementation of CAB-RPV-LA administration in two settings via mixed methods to explore perspectives of participants and the clinical team delivering CAB+RPV LA. METHODS AND ANALYSIS: Women, racially minoritised people and older people are chronically under-represented in HIV clinical trials so the ILANA trial has set recruitment caps to ensure recruitment of 50% women, 50% ethnically diverse people and 30% over 50 years of age to include a more representative study population. Using a mixed-methods approach, the primary objective is to identify and evaluate the critical implementation strategies for CAB+RPV LA in both hospital and community settings. Secondary objectives include evaluating feasibility and acceptability of CAB+RPV LA administration at UK clinics and community settings from the perspective of HIV care providers, nurses and representatives at community sites, evaluating barriers to implementation, the utility of implementation strategies and adherence. ETHICS AND DISSEMINATION: Ethical approval has been obtained from the Health Research Authority Research Ethics Committee (REC reference: 22/PR/0318). The dissemination strategy has been formulated with the SHARE Collaborative Community Advisory Board to maximise the impact of this work on clinical care and policy. This strategy draws on and leverages existing resources within the participating organisations, such as their academic infrastructure, professional relationships and community networks. The strategy will leverage the Public Engagement Team and press office to support dissemination of findings. TRIAL REGISTRATION NUMBER: NCT05294159.

Patient-generated data in the management of HIV: a scoping review.

OBJECTIVES: Patient-generated data (PGData) are an emergent research area and may improve HIV care. The objectives of this scoping review were to synthesise, evaluate and make recommendations based on the available literature regarding PGData use in HIV care. DESIGN: Scoping review. DATA SOURCES: Embase, Medline, CINAHL Plus, Web of Science, Scopus, PsycINFO and Emcare databases. ELIGIBILITY CRITERIA: Studies involving PGData use within HIV care for people living with HIV and/or healthcare professionals (HCPs) published before February 2021. DATA EXTRACTION AND SYNTHESIS: Data were extracted using a table and the Mixed Methods Appraisal Tool was used to assess empirical rigour. We used thematic analysis to evaluate content. RESULTS: 11 articles met the eligibility criteria. Studies were observational, predominantly concerned hypothetical or novel digital platforms, mainly conducted in high-income settings, and had small sample sizes (range=10-160). There were multiple definitions of PGData. In the majority of studies (n=9), participants were people living with HIV, with a few studies including HCPs, informatics specialists or mixed participant groups. Participants living with HIV were aged 23-78 years, mostly men, of diverse ethnicities, and had low educational, health literacy and income levels.We identified four key themes: (1) Perceptions of PGData and associated digital platforms; (2) Opportunities; (3) Anticipated barriers and (4) Potential impact on patient-HCP relationships. CONCLUSIONS: Use of PGData within HIV care warrants further study, especially with regard to digital inequalities, data privacy and security. There is a need for longitudinal data on use within HIV in a variety of settings with a broad range of users, including impact on clinical outcomes. This will allow greater understanding of the role of PGData use in improving the health and well-being of people living with HIV, which is increasingly pertinent as digital healthcare becomes more widespread as a result of COVID-19.