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. 2025 Jan;47(1):e13871.
doi: 10.1111/1467-9566.13871.

Hearing the Silence and Silenced: Co-Producing Research on Infant-Feeding Experiences and Practices With Black Women With HIV

Bakita Kasadha  1 , Shema Tariq  2   3 , Angelina Namiba  4 , Nell Freeman-Romilly  5 , Neo Moepi  4   6 , Gillian Letting  4 , Tanvi Rai  1
Affiliations

Hearing the Silence and Silenced: Co-Producing Research on Infant-Feeding Experiences and Practices With Black Women With HIV

Bakita Kasadha et al. Sociol Health Illn. 2025 Jan.

Abstract

In the UK, up to 700 people with HIV give birth annually; the majority are Black African migrant cisgender women. Infant-feeding decisions for parents with HIV are complex, requiring parents to weigh-up the small risk of HIV transmission via breastmilk and UK guidelines recommending formula milk, against strong personal and societal expectations to breastfeed. We explored this situation in a qualitative study. In this paper, we discuss our experiences of co-producing our research on infant-feeding experiences and practices among women with HIV. In particular, we focus on how our methodology, working practices and team structure enabled us to hear and describe the 'silences' and 'screaming silences' faced by our socially marginalised study participants. For the participants, intense multidimensional anxieties regarding infant-feeding had to be managed within a wider context and with people who were largely unaware of the potentially devastating impact that decision had on their reality. Our interdisciplinary study team and advisory panel comprised women with HIV, clinicians, policymakers and academics; the majority were racially minoritised women. Through regular team meetings, respect for the varied perspectives of all contributors and diverse dissemination routes, we sustained relational ethics with a broad range of stakeholders and impacted national policy.

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Conflict of interest statement

BK has previously received speaker honoraria and consultancy fees from Gilead Sciences and ViiV Healthcare. ST has previously received speaker honoraria and consultancy feeds from Gilead Sciences. She is immediate past Vice Chair of the British HIV Association's HIV and pregnancy guidelines writing committee, and leads the development of BHIVA's HIV and infant‐feeding guidelines.

Figures

FIGURE 1
FIGURE 1
Collage of study team and PPI river of life drawings.
FIGURE 2
FIGURE 2
Venn diagram of study team, PPI group and advisory panel, to demonstrate overlap of roles.
See this image and copyright information in PMC

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