Experiences of partners of women living with HIV

For the women who were in relationships with people who knew their status, their partners’ support played an important role in decisions about infant feeding. The information in this section comes from the experiences of two men, Edward and Stephen. Both men are HIV negative and were aware of their partners’ HIV diagnoses from the start of their relationships. Two of the women we spoke with had partners who were not aware of their HIV status and there were also some women whose partners did know, but they did not have in-depth conversations about infant feeding with them. Edward (Marella’s husband) and Stephen (Holly’s partner) therefore give a very specific perspective on being a partner of someone living with HIV.

If a person with HIV is taking their medication and has an undetectable viral load – meaning the virus is controlled – they cannot pass on HIV through sex. This is known as “U=U,” meaning Undetectable = Untransmittable. In this context, HIV cannot be passed on during sex, even when a condom is not used. Recent studies have found zero cases of HIV transmission through sex when a person has an undetectable viral load.

This page covers:

  • How partners of women with HIV gained knowledge about HIV and infant feeding
  • How partners of women with HIV contributed to and felt about decisions on infant feeding

How partners of women with HIV gained knowledge about HIV and infant feeding

Both Edward and Stephen received their information about HIV and infant feeding from medical staff and their partners. Their partners had gained knowledge and expertise about HIV and infant feeding through their own personal research and experiences. Edward felt fortunate that his wife Marella – who works within HIV care and support – helped him to understand the risks of HIV transmission and said about their decision to breastfeed that if “it wasn’t for her knowledge of it I think it would be a very different story”.

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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Partners also received information during hospital appointments. Stephen didn’t attend every appointment, so Holly would relay important information to him afterwards. Edward thought it was important for hospital staff to initiate conversations about infant feeding early during pregnancy to allow couples more time to make an informed decision about what they wanted to do.

Edward felt that it was important for medical staff to share clear information about infant feeding early in pregnancy (played by an actor).

I feel that if it wasn’t for her knowledge of it I think it would be a very different story, I think if perhaps we both went in as blind as I may have been or as uninformed as, as we were having not been presented with the information, I don’t, I don’t feel like the conversation would have gone the same way, I feel like the appointments with consultants and stuff are so few and far between that it doesn’t, I almost feel like you’re too far down the road before that conversation’s even started to happen and you could already made a decision or if you have made a decision and then you start to learn about it, it makes that decision even harder when I don’t think it should, I think the information should be made a, perhaps a bit clearer at the start.

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Stephen relied on information from sources he trusted, like his partner Holly, and the NHS website, to stay up to date about HIV and infant feeding choices. He also followed the news for stories about HIV.

Stephen found information about HIV and infant feeding from trusted sources like the NHS website.

I mean, I like the NHS is where I would start and then you kind of go from there. I don’t really wanna go real deep into kind of like scientific literature because it would probably go over my head. But, you know, kind of do what I can from trusted sources so to speak.

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How partners of women with HIV contributed to and felt about decisions on infant feeding

Edward and Stephen discussed the risks and benefits of breastfeeding and formula feeding with their partners during pregnancy. One of the important factors for them was the nutritional benefits of breastmilk.

Stephen, Holly’s partner, was interested in the benefits of breastfeeding for babies’ immune systems.

There’s a lot of, so yeah you’ve got the colostrum in the first like three or four days of breastfeeding which is kind of like sure to sort of like boost the immune system, lowers the risk of adult diabetes and obesity and a whole list of things.

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Edward and Marella have a two year old child, and Marella was pregnant. Their first child was born in the year that the UK guidelines changed to say breastfeeding can be supported if they meet certain criteria (e.g., undetectable viral load). Although Marella did meet the criteria, both she and Edward felt the change was too new to consider breastfeeding. Edward remembers that at the time of their first pregnancy there was a ‘lack of research and understanding of any potential risk’. He described being ‘shocked at the difference in the information that was being provided’. This time round, although it was the same information, more time had passed and they were looking at it with a different perspective.

Edward and his wife, Marella, have decided to breastfeed their second child, after formula feeding their first, because they are more confident about the low risk this time round (played by an actor).

I was shocked at the difference in the information that was being provided and it just, it for me flipped it, it flipped everything on its head because the decision was so quick last time, you know you almost thought well it worked last time can we just, you know, stick with the same process and now we had to make a, a decision, you know, completely against what we did the first time round. So I like a winning formula and the first time was good and we think, you know, why change it. But it’s, yeah, I think once I got like to grips with the information that was being provided and started to look into it and knew, you know, the risks that are still involved, however, you know, the ways of preventing them were, they were clearer and yeah I think it’s very different this time round.

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Edward emphasised that his priority was ‘supporting my partner and the decision that she wants to make with it’. He thought it was important for partners to be on-board with the whole process of infant feeding, as well as the initial decision. Without the support of close family, he felt that breastfeeding was ‘far less likely to succeed’. He also recalled that he enjoyed formula feeding their older child.

Edward enjoyed being able to bond through formula feeding their first child, but is fully supportive of his wife’s decision to breastfeed their second child when the baby is born (played by an actor).

One of the things I enjoyed the first-time round was that we could it put less pressure on just one partner to feed the child and for me as the male of a child I thought it was important for me to find at least some way to try and bond with the child when they were younger, so giving the opportunity to bottle feed early doors was quite, was quite helpful. Obviously when it came round to the second one knowing that as my thought process the first time probably took me a little while to be fully convinced I was very much lead by my partner actually saying that it was something that, that she really wanted to try and it didn’t take a huge amount of convincing for me but, you know, it’s one of those things, normally the decision is hers, you know, we make most decisions combined, that sort of decision is hers and if she wants to, she wants to go down that route then I can only fully support it.

And I think, I think what it was, again the impressions that I’ve got from my partner is that we, that she really wants the, again also the nutritional side of it but for her I think it’s the bonding side of it that’s really important this time and I don’t feel that that was lacking the first time round possibly but maybe it will help even more so this time.

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Stephen was initially keener on breastfeeding than his partner Holly, who was worried about the risks of passing on HIV. Stephen perceived the risk as very low because his partner has an undetectable viral load. He felt that ‘the advantages of breastfeeding for the first six months far outweigh the risk of passing, or a very, very low risk of passing HIV on’. After more discussion, and getting advice from health care professionals, his partner decided she would try breastfeeding.

Stephen’s partner, Holly, wasn’t sure about breastfeeding, but decided to try after receiving information about the benefits from midwives in their NCT class.

I’m more pro breastfeeding whereas Holy is not so pro, so yeah it’s a bit of a, the reasons behind it yeah I think Holly’s just more scared about the risk of breastfeeding and kind of yeah that sort of element and Holly’s mum didn’t breastfeed her so she’s like “well I turned into a strong adult”. And we’ve been doing, you know, like NCT (National charity for pregnancy, birth and early parenthood). So, we’ve been doing NCT and they have midwives who are pushing breastfeeding and kind of like giving you the benefits and kind of yeah this is what you should be doing. So now I think her mind’s slightly changed about it.

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Although the UK guidelines advise that formula milk should be freely available to all mothers living with HIV, it is not available everywhere. In some parts of the UK, formula milk is freely available for women living with HIV through charities and clinics.

HIV and infant feeding glossary

Antiretrovirals HIV medication taken to treat and manage the virus. ARVs / ARTs (both stand for antiretroviral therapy) HIV medication taken to treat and manage...