The Nourish-UK study aims to understand how new mothers or birthing parents living with HIV decide how to feed their newborn babies.
We aim to understand how new mothers/birthing parents living with HIV make decisions around feeding their babies in the UK. We will use this learning to develop a new ‘Infant feeding and HIV’ section on www.healthtalk.org, to be used by new mothers/birthing parents or anyone who would like to support them.
Why this is important:
When people living with HIV are on effective treatment, they cannot pass on HIV during sex. However, studies across African and Asian countries have shown a small chance of HIV transmission from breastmilk from parent to baby, even when on treatment. We currently do not know if this is the case for breastfeeding in high-income settings.
Depending on where a person lives in the world, new mothers and birthing parents with HIV are given different advice on feeding their babies. People living in the UK and other high-income settings, are advised to formula feed, although they are supported to breast-feed if they wish to. Meanwhile, across many low-income countries, the WHO guidance advises breastfeeding.
With varying advice across the world, there are gaps in knowledge about transmission for mothers/birthing parents who are on effective treatment. Moreover, less is known about the factors that shape infant-feeding decisions in the UK. As well as considering HIV transmission, people consider a wide range of factors such as HIV disclosure and stigma. Hearing and sharing their stories will highlight how new mothers and birthing parents need to be supported. These shared experiences will inform the design of improved patient guidance and better health and social care support for those living with HIV and giving birth.
What are we doing?:
We are interviewing women or birthing parents living with HIV, who are pregnant or have a baby younger than one year-old. We want to know about the many factors that have influenced how you are choosing or have chosen to feed your baby, and what you think about the current UK infant feeding guidelines.
HOw this will benefit patients and the public:
We want to use the interviews to develop an online platform as part of the Healthtalk.org website. This will form a record of people’s experiences of infant-feeding, whilst living with HIV in the UK. These personal narratives of new mothers and birthing parents will help inform and support other people who are making similar decisions. The content will be used to inform new policy and guidance around infant feeding in the context of HIV. It will also be used to inform a future study about the risk of transmission of HIV via breastmilk
Nyatsanza F et al. Over a third of childbearing women with HIV would like to breastfeed: A UK survey of women living with HIV. International Journal of STD & AIDS published online ahead of print, 25 February 2021. DOI: https://doi.org/10.1177/0956462421999951
Tariq S, Elford J, Tookey P, et al “It pains me because as a woman you have to breastfeed your baby”: decision-making about infant feeding among African women living with HIV in the UK Sexually Transmitted Infections 2016;92:331-336. https://sti.bmj.com/content/92/5/331
BMJ 2020; 371 "Food banks and infant formula: formula is critical for mothers with HIV"; doi: https://doi.org/10.1136/bmj.m4923