Infant feeding decisions among people living with human immunodeficiency virus in the United States: a pilot study

The benefits of breastfeeding for the lactating person and infant have been well established; however, for those living with HIV, the option to provide human milk has been contraindicated. In January 2023, the US national guidance was revised so breastfeeding can be supported through a shared decision-making process for virally suppressed individuals living with HIV. Few research studies have explored maternal experiences related to infant feeding decisions among people living with HIV (PWH) in the US.

A qualitative, modified critical ethnographic method was used to conduct in-depth interviews with pregnant, postpartum, or parenting persons currently living with HIV in the US. Semi-structured interviews were completed between October 2023 and March 2024. Analyses consisted of a grounded theory technique and thematic analysis.

A total of ten pregnant (n = 3), postpartum (n = 2), or parenting (n = 5) (aged 27-40 years) participants took part. Participants reported living with HIV between 4 and 28 years, with all participants currently taking anti-retroviral medication. Four central themes emerged: the need for support, fear of HIV transmission, the impact of HIV-related stigma, and the desire for feeding options. All participants emphasized the importance of support from family and friends, healthcare providers, and the community. Those who chose formula expressed fear of HIV transmission as the primary reason for not breastfeeding. Fear of transmission was an important motivating factor for infant medication prophylaxis for those who breastfed. Participants described experiences of internalized, anticipated, and experienced stigma from providers, family, and community members when discussing infant feeding decisions and disclosing their status. Finally, all participants wanted infant feeding options to be discussed with healthcare providers, regardless of their infant feeding intention.

Multiple factors influence the infant feeding decisions of PWH in the US. Due to these factors, there is a need for an informed, free-choice model that prioritizes unbiased information and situates feeding decisions in the hands of PWH. Further research is needed to ensure PWH are fully supported in their infant feeding decisions.