Conception to child-rearing in the early treatment era (CONCRETE): a qualitative study of the experiences of women living with HIV during pregnancy and motherhood

BACKGROUND: Women with HIV represent an increasing proportion of people with HIV, yet their specific needs during childbirth remain insufficiently addressed. This study explored how the experiences of women with HIV who delivered in the early antiretroviral therapy (ART) era can inform current HIV care. METHODS: Semi-structured interviews were conducted with 12 women with HIV who gave birth between 2000 and 2008 in an urban area of French-speaking Switzerland. Content analysis identified key themes in the women's narratives. RESULTS: Median age at interview was 51 years. Eight women delivered between 2001 and 2004, and four delivered between 2005 and 2008, on average, 9.2 years after HIV diagnosis. Three themes emerged: (1) HIV's impact on social interactions, including stigma and discussing HIV status with their child; (2) medical concerns, including the value of trust-based relationships with HIV physicians and (3) adjustment to life with a newborn. Women recalled difficulties in accepting imposed interventions-mandatory Caesarean section and avoidance of breastfeeding-perceiving these as depriving them of a 'full' motherhood experience. They also described the emotional burden ofwaiting for confirmation of their child's HIV-negative status. CONCLUSIONS: Societal attitudes were a major barrier to HIV-status sharing. Although current ART guidelines have evolved, women who delivered in the early ART era expressed long-lasting feelings of loss associated with past interventions. Their narratives highlight gaps between clinical progress and lived experience and underscore the need for holistic, long-term support for women with HIV and recognition that HIV can shape motherhood well beyond childbirth.