The podcast series, entitled ‘A Positive Life: HIV from Terrence Higgins to Today’, is presented by singer-songwriter Sam Smith. On episodes 6 and 7 of the podcast series, Bakita speaks about her research, her personal experience of living with an HIV diagnosis and the importance of communicating and collaborating with marginalised communities. Her commentary is centered within a wider conversation about the ongoing fight to end gender inequality and stigma within the fight for greater HIV awareness.
Bakita is a multi-award-winning poet, health researcher and health writer based in Oxford. She is a qualitative researcher within the Nuffield Department of Primary Care Health Sciences’s MS&HERG (Medical Sociology and Health Experiences Research Group), and is the main researcher on the NIHR RfPB-funded Nourish-UK study (led by Dr Tanvi Rai) exploring attitudes towards infant feeding among new mothers and birthing parents living with HIV.
The Nourish-UK study aims to understand how new mothers or birthing parents living with HIV decide how to feed their newborn babies. When people living with a positive HIV diagnosis are effectively treated, they have a very low viral load and cannot pass on HIV through sexual intercourse. However, several studies in African and Asian countries have indicated that there may be a small chance of HIV transmission through breastmilk, even when on treatment. As a result, advice on feeding babies within the context of HIV differs all over the world. UK residents and those in other high-income settings are often advised to formula feed, although they are supported to breast- or chest-feed if they so desire and meet certain criteria (i.e. very low viral load). However, across many low-income countries, WHO guidance advises breastfeeding even when HIV positive. This varying advice compounds the gaps in knowledge about transmission for mothers and birthing parents who are on effective HIV treatment. Additionally, less is known about the factors that shape infant-feeding decisions in the UK.
The MS&HERG research investigates how parents living with HIV and their partners in the UK decide how to feed their babies and their acceptability towards testing breastmilk to ascertain risk of HIV transmission. The Nourish-UK study considers HIV transmission, alongside a wide range of factors such as HIV disclosure and stigma. In the podcast, Bakita shares the stories of new mothers and birthing parents in the UK who are living with HIV: “capturing these experiences and involving key stakeholders throughout the study has enabled us to influence UK HIV and infant feeding policy. Having a study team formed of health researchers, women living with HIV and HIV clinicians has been key in the impact of this study, and highlights the importance of lived experience in shaping the direction of health research,” Bakita commented. The interviews will be used to inform the design of improved patient guidance, UK HIV infant feeding policy and better health and social care support for those living with HIV and giving birth.
Nourish-UK is a sub-study of Healthtalk, a programme of research that captures personal narratives and experiences of health and illness. The interviews will be featured on healthtalk.org to support and inform parents living with HIV and their medical teams.