Kasadha Bakita, Tariq Shema, Namiba Angelina, Freeman-Romilly Nell, Moepi Neo, Letting Gillian, Rai Tanvi
Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
Institute for Global Health, University College London, London, UK.
Sociol Health Illn. 2025 Jan;47(1):e13871. doi: 10.1111/1467-9566.13871.
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.
在英国，每年有多达700名感染艾滋病毒的女性分娩；其中大多数是非洲裔黑人移民顺性别女性。感染艾滋病毒的父母在婴儿喂养方式上的决策很复杂，他们需要权衡通过母乳传播艾滋病毒的微小风险以及英国推荐使用配方奶粉的指导方针，同时还要面对个人和社会对母乳喂养的强烈期望。我们在一项定性研究中探讨了这种情况。在本文中，我们讨论了共同开展关于感染艾滋病毒女性的婴儿喂养经历和做法研究的经验。特别是，我们关注我们的方法、工作实践和团队结构如何使我们能够倾听和描述我们那些处于社会边缘的研究参与者所面临的“沉默”和“尖叫的沉默”。对于参与者来说，关于婴儿喂养的强烈多维度焦虑必须在更广泛的背景下，与那些基本上没有意识到这一决策对他们的现实可能产生毁灭性影响的人一起应对。我们的跨学科研究团队和咨询小组包括感染艾滋病毒的女性、临床医生、政策制定者和学者；大多数是少数族裔女性。通过定期的团队会议、对所有贡献者不同观点的尊重以及多样的传播途径，我们与广泛的利益相关者保持了关系伦理，并影响了国家政策。
