Preparing for pregnancy while living with HIV: An exploratory qualitative study of Women's preconception information needs and priorities

Abstract

Abstract Introduction Preconception health is a key determinant of birthing people and infant outcomes. However, for people living with HIV, preconception care has predominantly focused on preventing vertical transmission, often neglecting broader needs. We conducted an exploratory qualitative descriptive study with women living with HIV to inform the development of a preconception health resource. Methods In collaboration with HIV peer support organization 4M Network, we conducted five focus group discussions (FGDs) via Zoom in June–July 2024. Participants were eligible if they were living with HIV, aged ≥18 years, UK residents, and had either recently been pregnant (within 5 years) or were a 4M Mentor Mother or 4M Co‐Director. FGDs were recorded, transcribed and analysed thematically. Results Sixteen cisgender women participated in five FGDs ; aged 26–57, all Black/Mixed ethnicity, most non‐ UK born, and diagnosed with HIV for 1–33 years. We identified five themes: healthy pregnancy meaning; pregnancy preparation; managing during pregnancy and postpartum; preconception discussions; and information sources. Participants across all groups (recently pregnant women, 4M Mentor Mothers and 4M Co‐Directors) identified a need for information on HIV management, physical and mental health, lifestyle, the pregnancy journey, and infant feeding. Most recently pregnant women had not discussed preconception health with their HIV clinicians, despite describing them as a main source of information and support. The findings emphasize the importance of holistic and tailored resources for women living with HIV. Conclusion This study describes the diverse needs of women living with HIV as they prepare for pregnancy, highlighting how these needs extend beyond the prevention of vertical transmission of HIV. Our findings informed the development of a freely available preconception health resource for people living with HIV.