The Nourish-UK study explores how new mothers/birthing parents living with HIV make decisions around feeding their babies in the UK.
The researchers interviewed 36 women living with HIV, who were pregnant or have a baby younger than one year-old. Although the research invited gender diverse participants, only cis gendered women contacted the study team. The study explored the many factors that have influenced participants’ choices about how to feed their baby, and what they think about the current UK infant feeding guidelines.
The findings are of great significance for British HIV Association (BHIVA) infant feeding guidelines. Notably, the study reveals that these guidelines are often not reflected in participants’ experiences, and many women reported a lack of information around their infant feeding options. Data suggests some healthcare professionals (HIV and non-HIV specialists) are either unaware of updated guidelines or are unwilling to implement them in practice. Such professionals, part of multidisciplinary team supporting pregnant women and mothers with HIV, require specific training and support regarding BHIVA’s infant feeding guidance.
Findings also indicate that mothers require more infant feeding support and advice during pregnancy and post-partum. For example, access to free formula milk eases financial burden for many women.
This study forms a record of people’s experiences of infant-feeding, whilst living with HIV in the UK. These personal narratives of new mothers with HIV 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 for informing ongoing discussions about measuring HIV transmission risk via breastmilk.
Bakita Kasadha, Lead researcher, Nuffield Department of Primary Care Health Sciences
People living with HIV on effective treatment cannot pass on HIV during sexual intercourse. However, studies across African and Asian countries have shown a small chance of HIV transmission from breastmilk from parent to baby, even when the parent is on treatment. Further research is required to determine whether this is also the case for breastfeeding in high-income settings.
Depending on where a person lives in the world, new mothers/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. However, 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, prospective mothers/birthing parents consider a wide range of factors such as HIV disclosure and stigma. Hearing and sharing their stories will highlight how new mothers/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.
NOURISH-UK's findings have already informed BHIVA infant feeding guidelines. Commenting on this, Principal Investigator for the study, Dr Tanvi Rai, Nuffield Department of Primary Care Health Sciences, says: “It is a mark of the significance of this research that in response to the study, the BHIVA UK guidelines have been updated in 2022 to clarify that mixed feeding with formula milk (baby receiving breastmilk and formula milk) is safe in certain situations. However, mixed feeding with solid food (baby receiving breastmilk and solid food) is not advised for babies under six months. This change will further assist those who are hoping to breastfeed.”
The research can be viewed on the Healthtalk.org website here.
This research was supported by the National Institute for Health and Care Research (NIHR).