Conversations with HIV clinicians about infant feeding and HIV

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.

Yeah she was very good at explaining things, what I should and shouldn’t do. My doctor was very adamant for just exclusively to breastfeeding, always, reminding me not to mix and stuff like that. Yeah, so, the team have been so, the team have been so good that I haven’t had any, thankfully, I haven’t had bad experience of that. Probably that’s why I’ve had, I’ve had been settled about breastfeeding, because any questions I had, any concerns I had, I always got them answered, so I was, yeah.

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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).

A lot of the information was from my partner and since we’ve done the initial bits and pieces we’ve had consultations with the doctor, we had an appointment just last week where this, this whole thing was discussed, that was with our consultant and midwife, and the information that they had, the guidelines were, were again handed to us then but I had already seen those guidelines albeit I can’t sit here and say that I remember everything in there because I think there were quite a few pages to it but we, you know I took them away again and I have read them and will probably continue to read it until the day the baby comes so, yeah [laughs].

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Find out more about fathers’ experiences

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.

If I had known that for this my baby, this one that’s one month now, maybe when my doctor asked me, “What are my options?” if he had explained that recently they’ve updated [the guidelines] and he had given me this information I would have gone straight to breast-, breastfeeding and maybe I would ask him, I would have asked him that same question of that has been on my mind since that made me go for bottle feeding. So, because I didn’t get this information I was just going, “Oh bottle feed.”

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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.

I was only aware of this advice when the midwives started telling me that because of the water here, we advise you to bottle feed and stuff like that. That’s when I was like “oh, okay”. Yeah so, what the midwives were telling me at that time that because here the water is good and they will give you free milk and free bottles, but to be fair I fought it all the way to the end. I did not want to bottle feed. I didn’t care about they are free bottles, I didn’t care about the free milk. For me I just wanted to have that bond with my child.

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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.

I said, “So, why are them examples so concerned of the social aspects?’ What about the physiological aspect of it? Why are they so narrowed down? Why is not being talked about?’ And that’s the few questions I’ve asked them and clearly no-one, no-one at all has answers because I even asked one of the doctors, “Even this breastmilk can be analysed in the laboratory. Do we have any laboratory studies?” Just like we analyse blood samples that analyse human milk from affected mothers, even mothers who have high viral load are compared with women who have low viral, undetectable viral load. What’s the difference?” and the doctor said, Oh he hasn’t researched to see if there are laboratory studies done, and I was like, ‘okay so the information you provided where did it coming from?’

They said, “It was guideline.” I was like, “What is the guideline based on? What informs the guideline?”

And what answers did you get?

They didn’t give me answer, you know, I think like I said maybe because I’m a black person they don’t understand that I have research understanding, I have understanding of how some of these things work. Most policies are informed by research and research can be outdated after some time when we have new knowledge and if there is no new knowledge you know you’re interpreting the old knowledge with caution. Maybe something may have changed so when I ask them questions, they treat it like, “Oh she doesn’t have enough knowledge, or she may not understand.”

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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.

When I was pregnant, they said to me that “After I’d given birth would I want to breastfeed or would I stay on formula?” because I was given that choice so I said, “I would like to breastfeed.” So then they now referred me to the, this conversation was initiated by the midwife and then they brought in a paediatrician I think from the clinic who came and spoke to me about the options for breastfeeding more and what the procedure would be after birth that she would have to take some medication and how long she would take the medication for and the blood test that she would have to undergo. Yes so she spoke to me about that and it wasn’t in one session I met up with her three times before I gave birth, to speak about the breastfeeding and what to expect and the time that I needed to sort of express and how long I wanted to breastfeed and the fact that both of us have to be healthy, no diarrhoea, no stomach, you know, doing for both of us in order for the breastfeeding to sort of take place and that at any time I sort of felt unwell or she felt unwell then we might have to stop the breastfeeding and I was also advised, I was also advised to express and then freeze, freeze it just in case I became unwell and I didn’t want to stop then I could use the frozen once I became well enough to be breastfeeding but then during that time I would have to express and pour away if that was the scenario.

Yes so I was advised to express before birth so that she can have that because that will build her immunity that build her immunity because after three days, three days of birth, the colostrum runs out and it becomes breast milk, so yes, I expressed a bit before giving birth.

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This support was especially important because of women feeling like non-HIV clinicians and maternity staff often had poor understanding about HIV.

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