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PPI case study

Bakita Kasadha and Tanvi Rai

The project

Dr Tanvi Rai and Bakita Kasadha are researchers in the Medical Sociology and Health Experiences Research Group working on Nourish-UK, a study about infant-feeding decisions within the context of HIV. The study involves interviewing women and birthing parents with HIV who are pregnant or have a baby under a year old, about what has influenced the way they choose to feed their baby, what information and support they have found useful and where they would like to see improvements. The interviews will be used to develop a module on the award-winning free online resource, Healthtalk.org, to create a record of people’s experiences of infant-feeding while living with HIV. This site will serve as a resource for others living with HIV, and for the clinical and non-clinical professionals supporting them. The study findings will also be used to update information and support about infant-feeding provided by the British HIV Association.

The PPI

All Healthtalk.org projects are about sharing people’s experiences and so include PPI panels within each study. The PPI panel within Nourish-UK is made up of five mothers living with HIV who have met with Tanvi and Bakita a number of times for discussions that have shaped the design and progress of the study. The PPI members are also part of the project’s advisory panel which comprises about 20 stakeholders, including specialist clinicians and midwives, lactation consultants and representatives from HIV charities and policy groups.

The impact of PPI

Along with the other stakeholders in the Nourish-UK advisory panel, the PPI members have brought valuable insights to the project. Among the points they raised is the importance of using stigma-free language when working with parents who are living with HIV. They have also reflected on how changes in infant-feeding guidelines within the context of HIV have affected them. Recalling their own experiences of motherhood in the context of HIV, they narrated interactions with health care professionals who were not specialists in HIV, and sometimes gave inconsistent advice and support around infant feeding in the context of HIV, including withholding information about the range of possible feeding options. The PPI panel have highlighted the importance of informed choice and open conversations between patients and clinicians, as well as suggesting ways to make the Nourish-UK study more accessible to the widest range of people.

These discussions have influenced the project aims, methods, recruitment, planned outcomes and dissemination strategies; Tanvi and Bakita believe the PPI input has enhanced this research, meaning that the work will ultimately better meet the needs of all new parents living with HIV.

The data has impacted the national UK HIV and infant feeding guidelines, which the British HIV Association will announce in a position statement in late 2023/early 2024.