How women living with HIV in the UK manage infant-feeding decisions and vertical transmission risk - a qualitative study.

BACKGROUND: The World Health Organization (WHO) recommends that women with HIV breastfeed for a minimum of one year. In contrast, across high-income countries, HIV and infant-feeding guidelines recommend exclusive formula feeding if parents want to avoid all risk of postpartum transmission. However, recently these guidelines (including in the United Kingdom (UK)) increasingly state that individuals with HIV should be supported to breast/chest feed if they meet certain criteria; such as an undetectable maternal HIV viral load and consent to additional clinical monitoring. Between 600 and 800 pregnancies are reported annually in women with HIV in the UK, with low rates of vertical transmission (0.22%). Informed infant-feeding decision-making requires clinical support. Currently, little research addresses how individuals with HIV in high-income countries navigate infant-feeding decisions with their clinical teams and familial and social networks, and the resources needed to reach an informed decision. METHODS: Semi-structured remote interviews were conducted between April 2021 - January 2022 with UK-based individuals with a confirmed HIV diagnosis who were pregnant or one-year postpartum. Using purposive sampling, pregnant and postpartum participants were recruited through NHS HIV clinics, community-based organisations and snowballing. Data were analysed thematically and organised using NVivo 12. RESULTS: Of the 36 cisgender women interviewed, 28 were postpartum. The majority were of Black African descent (n = 22) and born outside the UK. The majority of postpartum women had chosen to formula feed. Women's decision-making regarding infant-feeding was determined by (1) information and support; (2) practicalities of implementing medical guidance; (3) social implications of infant-feeding decisions. CONCLUSION: The evolution of UK HIV and infant-feeding guidelines are not reflected in the experiences of women living with HIV. Clinicians' emphasis on reducing the risk of vertical transmission, without adequately considering personal, social and financial concerns, prevents women from making fully informed infant-feeding decisions. For some, seeking advice beyond their immediate clinical team was key to feeling empowered in their decision. The significant informational and support need among women with HIV around their infant-feeding options must be addressed. Furthermore, training for and communication by healthcare professionals supporting women with HIV is essential if women are to make fully informed decisions.

"We decided together": a qualitative study about women with HIV navigating infant-feeding decisions with the father of their children.

BACKGROUND: The World Health Organization (WHO) recommends that women with HIV breastfeed for a minimum of one year. In contrast, United Kingdom (UK) guidelines encourage formula feeding, but breastfeeding can be supported under certain circumstances. Infant-feeding decisions often involve personal and social networks. Currently, little research addresses how individuals with HIV in high-income countries navigate infant-feeding decisions with the father of their children. METHODS: Semi-structured remote interviews were conducted with UK-based individuals with a confirmed HIV positive diagnosis who were pregnant or one-year postpartum, and two partners. Using purposive sampling, pregnant and postpartum participants were recruited through HIV NHS clinics and community-based organisations, and where possible, fathers were recruited via them. Data were analysed using thematic analysis and organised using NVivo 12. RESULTS: Of the 36 women interviewed, 28 were postpartum. The majority were of Black African descent (n = 22) and born outside the UK. The key factors in women navigating HIV and infant-feeding discussions with respect to their baby's father were the latter's: (1) awareness of woman's HIV status; (2) relationship with the woman; (3) confidence in infant-feeding decision; (4) support and opinion about woman's infant-feeding intentions. Most women made a joint decision with biological fathers when in a long-term (> one year) relationship with them. Single women tended not to discuss their infant-feeding decision with the father of their child, often for safety reasons. CONCLUSION: Women in ongoing relationships with the father of their child valued their support and opinions regarding infant-feeding. In contrast, single women chose not to involve the father for reasons of privacy and safety. Clinical teams and community-based organisations should support mothers in discussing infant-feeding decisions regardless of relationship status. When appropriate, they should also support discussions with their partners, but remain sensitive to circumstances where this may put women at risk.

Fits, feet and HIV: lessons from a case of coexisting epilepsy and neuropathy in a patient with perinatally acquired HIV-1 infection.

An 18-year-old black African man with well-controlled perinatally acquired HIV-1 was diagnosed in late adolescence with the unrelated diagnoses of Charcot-Marie-Tooth type 1A (CMT1A), epilepsy due to polymicrogyria and subsequently developed severe depression. The CMT1A diagnosis occurred after transfer of care from a local paediatric HIV service to a tertiary paediatric referral centre and was precipitated by recognition of a history and neurological signs not typically associated with perinatal HIV. The case resulted in the establishment of a quarterly combined paediatric HIV and paediatric neurology multidisciplinary team clinic to assess children and adolescents living with HIV with neurological symptoms.

Does community-based point of care HIV testing reduce late HIV diagnosis? A retrospective study in England and Wales.

The objective of this study was to investigate if patients diagnosed in community clinics have higher baseline CD4 cell counts than those diagnosed in Genitourinary medicine (GUM)/HIV clinics. We undertook a retrospective review of baseline CD4 cell counts for patients receiving a reactive HIV test in community-testing clinics. Eleven local HIV clinics were contacted to determine the baseline CD4 cell counts of these patients. Baseline CD4 cell counts of those diagnosed in the community were compared with mean local GUM/HIV clinic and median national baseline CD4 cell count for their year of diagnosis. Clients diagnosed in community settings had a mean baseline CD4 cell count of 481 cells/mm3 (SD 236 cells/mm3) and median baseline of 483 cells/mm3 (interquartile range 311-657 cells/mm3). This was significantly higher than those diagnosed in the GUM/HIV clinic local to the community-testing site (mean baseline CD4 397 cells/mm3, p = 0.014) and the national median for that year (336 cells/mm3, p < 0.001). HIV testing in community settings identifies patients at an earlier stage of infection than testing in clinical settings.