Title: A qualitative investigation of attitudes towards infant feeding among new mothers living with HIV in the UK.
Funder: Department of Health and Social Care

Abstract: BACKGROUND HIV remains a socially isolating condition felt acutely by women transitioning into motherhood. Vertical transmission of HIV can occur during pregnancy, birth or breastfeeding. The World Health Organisation (WHO) recommends all mothers should exclusively breastfeed their children until 6 months of age regardless of the mother s HIV status. In contrast, until recently, the British HIV Association (BHIVA) guidance recommended exclusive formula feeding for women living with HIV (WLHIV). New evidence indicating a lower transmission risk facilitated a 2018 update in BHIVA guidance, which now recommends that WLHIV can breastfeed if they adhere to new Safer Breastfeeding criteria. This greater flexibility potentially increases the complexity of infant feeding decisions particularly in the context of other public health messages such as breast is best and undetectable = untransmittable (regarding the sexual transmission of HIV). Poor adherence to the updated guidance could increase postnatal transmission. AIM To improve understanding of infant feeding decision-making among pregnant women and new mothers living with HIV in the UK and to develop a new Infant feeding and HIV section on www.healthtalk.org for use by patients and professionals. OBJECTIVES: Objective 1. Explore how WLHIV make decisions about infant feeding, and to identify their information and support needs and potential solutions. Objective 2. Explore WLHIV s attitudes towards participation in future research that would involve testing breastmilk. Objective 3. Develop a new Infant feeding and HIV section on Healthtalk.org to support and inform pregnant WLHIV, their families, friends and health providers about different aspects of making and supporting decisions about infant feeding in the context of HIV. Objective 4. Conduct a mixed-methods formative evaluation of the new online section on Infant feeding and HIV on Healthtalk. METHODS Using rigorous, established methods we will conduct in-depth qualitative interviews with a diverse, national sample of 30-40 WLHIV who are pregnant or have infants &le;12 months. Data will be analysed thematically. In addition to standard academic outputs, our findings will be published, after a formative evaluation, as a new section on Infant feeding and HIV on the public-facing, non-commercial, free resource, Healthtalk.org. This will incorporate 10-15 topic summaries, and ~125 audio/video clips from the interviews, illustrating WLHIV s experiences regarding infant feeding. TIMELINES FOR DELIVERY Fieldwork: months 1-8 Analysis: months 2-11 Academic publications, infographic: months 13-18 Producing the Healthtalk resource: months 9-14 Formative evaluation: months 14-16 Publication of revised site: month 18 Dissemination activities: months 13-18 IMPACT AND DISSEMINATION Drawing on the experiences of WLHIV, we will produce a highly accessible, evidence-based, online patient resource from which women can draw support. We will: Disseminate our findings through multiple channels, including academic publications, conferences, an infographic and social media, and promote the new Healthtalk.org section through existing links with WLHIV in antenatal care, major HIV and maternal health organisations and NHS trusts. Produce a summary document for BHIVA to inform future updates of their patient information on HIV and infant feeding. Assess the acceptability and inform methodology for a planned future epidemiological study on viral load and breast milk testing in the UK.

Lay abstract: BACKGROUND Although the risk is small, HIV can pass from mother to infant through breastfeeding, even when HIV is well controlled. There are no studies of this risk in high-income countries. Previous research mainly comes from sub-Saharan Africa, where mothers are recommended to breastfeed because health benefits to the baby outweigh the risk of transmission. Women living with HIV in the UK are advised to formula-feed, although they are supported to breastfeed if they strictly follow breastfeeding guidelines. Therefore, they may receive mixed messages, against a backdrop of breast is best public health promotion. People with HIV experience stigma, shame and isolation. Pregnant women with HIV face extra challenges including guilt and fear about their baby s safety and concerns about whether to breastfeed. They worry about the risk of infection, missing out on bonding with their baby and feel anxious about explaining to others if they are not breastfeeding. AIM To explore the experiences of pregnant women and new mothers living with HIV in the UK in their decision-making about infant feeding and create an online source of information and support on this topic on Healthtalk.org. METHODS We will interview 30-40 women living with HIV who are pregnant or have babies up to 12 months old. Topics covered will include their decision-making about infant feeding, sources of information and advice, support they need, and their views on participating in research, including future work on HIV and infant feeding. Recruitment will be via antenatal clinics, HIV support groups and social media to include women of different ages, ethnicities, with varying numbers of children and living across the UK. Analysis of the interviews will inform a new Infant feeding and HIV section on Healthtalk.org, which will provide reliable and evidence-based information on the topic, illustrated with short clips of study participants discussing their experiences. PATIENT AND PUBLIC INVOLVEMENT Co-applicant Namiba has experienced motherhood with HIV, and supports and advises women living with HIV. We discussed our proposed project with five mothers with HIV. Going forward, an Advisory panel and PPI panel (both including mothers living with HIV) will help in finding participants, shaping and choosing interview questions, interpreting our findings and dissemination. DISSEMINATION Through clinical and HIV support networks, social media and a launch event, we will promote among women living with HIV: the new Infant feeding and HIV section of Healthtalk.org a lay summary of findings with pictures and diagrams, in print and on line. Publish peer-reviewed journal articles and present findings at HIV conferences. Prepare a summary document for the British HIV Association to inform updates of guidance and patient information materials on infant feeding. Use the findings about women s views on breastmilk testing to inform future research.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: INFECTION;REPRODUCTIVE HEALTH AND CHILDBIRTH