In this section we explore the conversations that women in our study had with their HIV-specialist doctors, nurses and midwives about how to feed their babies. We cover the following topics here:
- HIV clinicians sharing information about the 2020 BHIVA guidelines, and options available
- Feeling like there was no choice to breastfeed
- The importance of having the support of HIV clinicians
There was variation in how long and detailed these conversations were, and how much women had felt they had made a well-informed decision. The BHIVA (British HIV Association) guidelines, updated in 2020, still recommend formula feeding to remove all HIV transmission risk. However, any feeding parent living with HIV who chooses to exclusively breastfeed can do so, as long as they have an undetectable viral load and follows extra checks in place for themselves and their baby.
HIV clinicians sharing information about the 2020 BHIVA guidelines, and options available
Some of the women we spoke with recalled that their HIV-doctors were familiar with the 2020 BHIVA guidelines regarding infant feeding and had taken time to explain the current situation to them. For example, Marella, Gracelove, Holly, Maria and Eriife were grateful to have lengthy conversations with their doctors and midwives about the latest evidence, as well as the practicalities of how to manage each option.
Eriife received consistent and clear guidance from her clinical team and it made her feel reassured.
Regardless of what women eventually decided to do – breastfeed or formula feed – when clinicians discussed various infant feeding choices in an open and unbiased way, women felt more confident about their feeding decision.
We also spoke to two fathers about their thoughts of infant feeding. Stephan’s partner, Holly is pregnant with their first child. Edward’s wife, Marella is pregnant with their second child, they also have a two-year-old son. They formula fed their first child but are considering breastfeeding their next one.
Most of Edward’s information came from his wife, but he also discussed infant feeding with doctors and midwives and was given a document with the latest guidelines (played by an actor).
Feeling like there was no choice to breastfeed
Not everybody had had positive experiences of talking with their HIV clinicians about infant feeding. Amy and Marcy did not find out they could have breastfed until their babies were several months old. Deborah and Lana felt that their clinician was really against breastfeeding and did not give them any choice. As it was important for women to have the support of their clinicians, they felt compelled to agree with them, even though a few still clearly felt upset about it.
Marcy was not told about the BHIVA guidelines and that she had an option to breastfeed – she feels she would have tried it if she had known.
Sometimes clinicians seemed so focussed on preventing all risk of HIV transmission to the baby that they completely failed to take the woman’s own thoughts on board. The information they provided was often heavily biased rather than objective, sometimes incomplete or partly inaccurate. From example, babies who breastfeed have their bloods tested every month, not every week, as one woman was told. Some women recounted that their HIV clinicians had presented formula feeding in highly positive ways in order to convince them not to breastfeed. For example, Nozipho’s midwives told her about the clean water in the UK, the availability of free milk and free bottles in order to make formula feeding more attractive.
Nozipho’s midwives told her about free formula and bottles and ignored her wish to bond with her baby via breastfeeding.
A few women also felt like they were not treated with respect, or even as adults who were capable of making sensible decisions about themselves and their babies.
Lana asked questions about the guidelines but got few answers. Pregnant at the time, Lana felt like her HIV clinicians judged her as incapable of understanding research because she is Black.
Other women shared the ways that they thought their nationality and ethnicity affected how healthcare professionals interacted with them.
From listening to women, it appeared that sometimes clinicians’ own lack of experience and knowledge in supporting women living with HIV to breastfeed made them nervous to have open conversations about options. When women asked them questions, they were tempted to shift the responsibility onto them, rather than involving them in shared decision-making.
The importance of having the support of HIV clinicians
Having the support and continuity of care from their HIV team was important to women. Given the socially stigmatised nature of HIV, along with the added anxieties around pregnancy and childbirth, many women stressed their need to have good relationships with their medical team.
Gracelove had several conversations with her clinical team during and after her pregnancy.
This support was especially important because of women feeling like non-HIV clinicians and maternity staff often had poor understanding about HIV.