Hearing the Silence and Silenced

Co-Producing Research on Infant-Feeding Experiences and Practices With Black Women With HIV

Bibliographic Data

ID2250450
AuthorsBakita Kasadha (0000-0003-2862-183X, Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UK, corresponding author), Shema Tariq (0000-0001-9802-7727, Institute for Global Health University College London London UK), Angelina Namiba (0000-0003-2285-0850, 4M Mentor Mothers Network London UK), Nell Freeman‐romilly (0000-0002-9587-0126, Oxford University Hospitals NHS Foundation Trust Oxford UK), Neo Moepi (4M Mentor Mothers Network London UK), Gillian Letting (4M Mentor Mothers Network London UK), T Rai (0000-0001-5201-9780, Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UK)
Year2025
Volume47
Issue1
Pagese13871-e13871
Publication date2025-01-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueSociology of Health & Illness (JOURNAL)
Journal identifiersISSN: 0141-9889 • E-ISSN: 1467-9566
PublisherWiley (PUBLISHER • GB)
DOI10.1111/1467-9566.13871
PMID39743738
OpenAlexW4406001474
LanguageEN
References cited71

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

Context (archaeology · Family medicine · Focus group · Geography · Human immunodeficiency virus (HIV · Political science · Public relations · Qualitative research · Screaming · Silence · Social science · Sociology · Children's Rights and Participation · Gender Studies · HIV/AIDS Research and Interventions · Homelessness and Social Issues · Medicine · Psychology

Tools

Open DOIOpen Access