Infant feeding as a transgressive practice in the context of HIV in the UK: A qualitative interview study

HIV transmission risk via breastfeeding is greatly reduced by antiretroviral therapy but is not zero. Current UK guidelines recommend exclusive formula feeding; however, women can breastfeed if they meet certain criteria. We examine the narrative accounts of mothers with HIV (pregnant or recently given birth) who navigated divergent cultural and national policy norms regarding infant feeding. Mothers with HIV, the majority of whom in the UK are of Black African ethnicity, face a complex decision regarding infant feeding, which has implications for their sense of identity, belonging and citizenship. While the UK has one of the lowest breastfeeding rates globally, breastfeeding is normalised across African and Asian cultures. However, HIV remains stigmatised and formula feeding could signal one's HIV-positive status. Our participants made difficult trade-offs to mitigate the variety of threats they faced, and both feeding options (breast or formula) felt transgressive, with immense hazards involved for these intersectionally-disadvantaged women

Infant feeding as a transgressive practice in the context of HIV in the UK: a qualitative interview study

HIV transmission risk via breastfeeding is greatly reduced by antiretroviral therapy but is not zero. Current UK guidelines recommend exclusive formula feeding; however, women can breastfeed if they meet certain criteria. We examine the narrative accounts of mothers with HIV (pregnant or recently given birth) who navigated divergent cultural and national policy norms regarding infant feeding. Mothers with HIV, the majority of whom in the UK are of Black African ethnicity, face a complex decision regarding infant feeding, which has implications for their sense of identity, belonging and citizenship. While the UK has one of the lowest breastfeeding rates globally, breastfeeding is normalised across African and Asian cultures. However, HIV remains stigmatised and formula feeding could signal one's HIV-positive status. Our participants made difficult trade-offs to mitigate the variety of threats they faced, and both feeding options (breast or formula) felt transgressive, with immense hazards involved for these intersectionally-disadvantaged women

Setting the research agenda: involving parents in research on children who are HIV-free

INTRODUCTION: There is growing interest in health, developmental and survival outcomes of children who are born HIV-free to women living with HIV (children born HIV-free). To date, the research agenda has been largely determined by researchers, funders and policy makers, with limited involvement of parents, who are key stakeholders. Researchers at UCL Great Ormond Street Institute of Child Health in partnership with community-based organisation 4M Network of Mentor Mothers conducted two workshops with parents in March 2022 to establish research priorities for children born HIV-free, and key considerations for methodological approaches both to research and engagement with the affected communities. DISCUSSION: When exploring research on children born HIV-free, we consider the following: what aspects of current research are aligned with women and parents' priorities, what is missing and what approaches would be preferred. A holistic approach to research on children born HIV-free should be prioritised, focussing on a breadth of outcomes and how they intersect. Secondary use of existing data sources should be maximised to facilitate this, with a view of monitoring the long-term effects of fetal antiretroviral drug exposure alongside other key health and developmental outcomes. Involving and engaging with parents, and children where possible, must be at the heart of research design to maximise relevance and impact of findings for the affected communities. Potential barriers to engaging with individuals who were children born HIV-free include parental disclosure and individuals not identifying as a child born HIV-free to a mother living with HIV. Stigma-free language must be incorporated into the vocabulary of researchers and other stakeholders, avoiding reference to exposure; we propose the term "children born HIV-free." CONCLUSIONS: Mothers and parents living with HIV should be involved in research about their children born HIV-free and are key in identifying research priorities so that findings may translate into an impact on their children's health and wellbeing. Meaningful involvement of women living with HIV through trusted community partners is an effective mechanism by which to elicit views on research about their children

Surveillance of ARV safety in pregnancy and breastfeeding: towards a new framework

INTRODUCTION: As new antiretrovirals (ARVs), including long‐acting ARVs for treatment and prevention, are approved and introduced, surveillance during pregnancy must become the safety net for evaluating birth outcomes, especially those that are rare and require large numbers of observations. Historically, drug pharmacovigilance in pregnancy has been limited and fragmented between different data sources, resulting in inadequate data to assess risk. The International Maternal Pediatric Adolescent AIDS Clinical Trials Network and World Health Organization convened a Workshop which reviewed strengths and weaknesses of existing programs and discussed an improved framework to integrate existing safety data sources and promote harmonization and digitalization. DISCUSSION: This paper highlights that although robust sources of safety data and surveillance programs exist, key challenges remain, including unknown denominators, reporting bias, under‐reporting (e.g. in voluntary registries), few data sources from resource‐limited settings (most are in North America and Europe), incomplete or inaccurate data (e.g. within routine medical records). However, recent experiences (e.g. with safety signals) and current innovations (e.g. electronic record use in resource‐limited settings and defining adverse outcomes) provide momentum and building blocks for a new framework for active surveillance of ARV safety in pregnancy. A public health approach should be taken using data from existing sources, including registries of pregnancy ARV exposure and birth defects; observational surveillance and cohort studies; clinical trials; and real‐world databases. Key facilitators are harmonization and standardization of outcomes, sharing of materials and tools, and data linkages between programs. Other key facilitators include the development of guidance to estimate sample size and duration of surveillance, ensuring strategic geographic diversity, bringing partners together to share information and engaging the community of women living with HIV. CONCLUSIONS: Looking ahead, critical steps to safely introduce new ARVs include (1) adopting harmonized standards for measuring adverse maternal, birth and infant outcomes; (2) establishing surveillance centres of excellence in areas with high HIV prevalence with harmonized data collection and optimized electronic health records linking maternal/infant data; and (3) creating targets and evaluation goals for reporting progress on implementation and quality of surveillance in pregnancy. The platform will be leveraged to ensure that appropriate contributions and strategic actions by relevant stakeholders are implemented

Setting the research agenda: involving parents in research on children who are HIV‐free

Abstract Introduction There is growing interest in health, developmental and survival outcomes of children who are born HIV‐free to women living with HIV (children born HIV‐free). To date, the research agenda has been largely determined by researchers, funders and policy makers, with limited involvement of parents, who are key stakeholders. Researchers at UCL Great Ormond Street Institute of Child Health in partnership with community‐based organisation 4M Network of Mentor Mothers conducted two workshops with parents in March 2022 to establish research priorities for children born HIV‐free, and key considerations for methodological approaches both to research and engagement with the affected communities. Discussion When exploring research on children born HIV‐free, we consider the following: what aspects of current research are aligned with women and parents’ priorities, what is missing and what approaches would be preferred. A holistic approach to research on children born HIV‐free should be prioritised, focussing on a breadth of outcomes and how they intersect. Secondary use of existing data sources should be maximised to facilitate this, with a view of monitoring the long‐term effects of fetal antiretroviral drug exposure alongside other key health and developmental outcomes. Involving and engaging with parents, and children where possible, must be at the heart of research design to maximise relevance and impact of findings for the affected communities. Potential barriers to engaging with individuals who were children born HIV‐free include parental disclosure and individuals not identifying as a child born HIV‐free to a mother living with HIV. Stigma‐free language must be incorporated into the vocabulary of researchers and other stakeholders, avoiding reference to exposure; we propose the term “children born HIV‐free.” Conclusions Mothers and parents living with HIV should be involved in research about their children born HIV‐free and are key in identifying research priorities so that findings may translate into an impact on their children's health and wellbeing. Meaningful involvement of women living with HIV through trusted community partners is an effective mechanism by which to elicit views on research about their children