The role and support of partners, friends and family

This section covers:

  • Conversations with the father of the child
  • Making feeding decisions without the father of the child
  • Advice and support from family and friends
  • Managing questions and suspicion from family and friends

The role of loved ones was important to the women we spoke to. In this section, women discuss the support they got while deciding how to feed their babies, throughout their pregnancy and after giving birth. They told us about whether, and how much, they had discussed with the father of their child about their pregnancy and infant feeding options, and their involvement in medical appointments. Some women discussed the support they had received from family and friends who knew about their HIV status. Women also described how they navigated awkward questions from family and friends who did not know they HIV status.

For some women, only their husbands and partners know of their HIV status. This sometimes meant they had to think of ways to explain  why they were formula feeding, when questions were raised. Some women were separated from their husbands and did not to talk to them about their decision. Two women were in relationships where their partners did not know, so they could not share the guidelines with them.

Conversations with the father of the child

The majority of the women we spoke to had at least one person who knew their HIV status (beyond their medical team), and most of the time it was their partner. Women like Marella, Sasha, Sinead, Christine, Layla and Stephanie had discussed with their partners about whether they would formula feed or breastfeed.

Layla had considered breastfeeding because she knew that breastfeeding is encouraged in East Africa, but eventually agreed with her husband’s choice to formula feed.

But I was, obviously coming from East Africa and having, because I volunteered for [International organisation] in East Africa when I was doing my Masters and I remembered seeing women with HIV and they were breastfeeding because that was considered a lot more safer than formula feeding in East Africa this is, but obviously because I think of water contamination and stuff like that the women were encouraged to breastfeed. But I know that was a possibility but because it wasn’t happening here I was like there’s a reason why it’s not happening is because of the risk that’s there so I just decided no, I’d best not risk anything at all really.

And how do you feel like do you have any thoughts on different guidelines depending on where you live in the world?

I guess, I don’t know it’s really difficult, obviously living in the UK is very different to living in East Africa and I guess the risks here and there are very different as well in terms of hygiene and things like that. But I don’t know I guess I would have to go with where I live.

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Christine felt supported by her partner, who said it was up to her. He said “whatever you feel comfortable with.” Similarly, Maya’s partner wanted her to do: “What would make me happy as well. Because again, it’s in my body, I would be doing the work.” Maya decided with her partner to formula feed their baby, and when her partner’s mother would ask why they are formula feeding, they would reply “Because we want to.” Meanwhile, Layla and her husband talked about infant feeding but had differing opinions. Layla had seen women with HIV breastfeeding in Kenya and was therefore interested in that option. However, her husband wanted to remove all possible transmission risk, and so eventually Layla also agreed with him and formula fed their baby.

Some women like Sasha mainly went to their appointments alone and then shared what they had discussed with medical staff with their partners. Others, like Lana and Maya, typically went to their appointments with their partners.

Maya and her partner wanted to choose the safest option for their baby.

Because like I said we, because we both attended that appointment. It was nice for us to both hear the same information, wasn’t me telling him. So, it be like on a biased affect. I think he just wanted the same outcome whatever is the safest option in terms of for our baby, not going to give him like slightly chance of getting it. I think that was that was one of our main, our main concern. And I think also just having the miscarriage, miscarriage happened beforehand. I think that influenced our decision hugely. Because again, we were like, we just want a very healthy baby in every shape, way, or form. How do, how do we receive, how do we get? And we knew that that was what it, the decision making are. It felt safer to do, in that sense of just got you know, especially with where our minds was at and Covid and everything, we just wanted the safest option.

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The two fathers we spoke to supported their partners’ feeding choice. They were interested in the science of HIV transmission and the latest guidelines but did not necessarily attend all the medical appointments.

For most women who were in a relationship, the support and advice from their partner was important in making their decision. We spoke to Marella’s and Holly’s partners about their decision-making regarding infant feeding (both women were still pregnant at the time).

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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See more on the experiences of partners of women living with HIV.

Making feeding decisions without the father of the child

Some women did not talk to the father of their child about their feeding decision – this was for a range of reasons. Maria’s husband knows her HIV status, but because he is so ‘heavy on breastfeeding’, Maria did not share that the UK infant feeding guidelines encourage formula feeding. She had always wanted to breastfeed and was ‘relieved’ when she learned she could breastfeed with support from her HIV doctors, and therefore did not have to raise the topic with her husband.

Maria’s husband knows her HIV status but not that formula feeding is encouraged (played by an actor).

Yeah I think, I think I saw that I hadn’t like, when I’d kind of spoken to my husband about the diagnosis I hadn’t really mentioned to him that “Oh I wouldn’t be able to breastfeed” because that was, at the time that was what the doctor had said when I was in my first clinic but I didn’t really mention that and he’s always been so heavy on the breastfeeding side of things, so when, when my second doctor had said ‘oh yeah you know you can breastfeed’ and I was like it was just such a relief that she even said that because I don’t have to face that kind of conversation with my husband as well.

Just like he’s read about the benefits of it and how his friends like wives and so they’ve all breastfed and he’s just, I think he just knows as well that it’s just best for the baby.

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Biola’s husband does not know her HIV status as she became HIV positive before they met. One of the reasons she breastfed was to avoid raising any suspicions about her HIV status from him, and she worried every time he tried to give the baby food.

Biola felt stressed because the father of her children does not know her HIV status.

The dad of my children, he don’t know about my status at all.

Yeah and of course because dad doesn’t know so you had to be careful if he was giving food. Okay, yeah. Yeah.

And his work, everyone used to ask, why you do not, why you giving yourself, whenever even if I’m going through the office, I have to put her in the pushchair. Sometimes he says “No, just go give her bottle back.” You know. Or some-, one day we went to buy a litre of milk, and he say to if you can start mix at first and then, the thing like with women. You know that life. That’s how my grandma told me not to mix because if I mix, if I mix you know the baby might get used to the bottle, day and night you know.

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At the time when we spoke with them, Gracelove and April were separated from the fathers of their babies, and had therefore not discussed with them about their infant feeding choices.

April is separated from her husband and has not discussed the decision with him (played by an actor).

No, no, no I did not discuss it with him. I made my own decision because I, when I got pregnant he, we, oh let me put it this way, we had our problems like for a very long period of time like for and by the time I got pregnant I was in the process of leaving him so I found out I was pregnant in the, was it December, yeah December I think, or November, November or December and December he travelled, so I was, when I was pregnant I was on my own all this time for the nine months so I did not include him in making decisions, I make my own decisions.

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Advice and support from family and friends

For women like Marella, Sasha and LeaSuwanna, most of the people in their lives know their HIV status, which has meant for the most part, they could be honest about their feeding decisions, regardless of whether they choose to breastfeed or formula feed. There was a range of practical and emotional support and advice on offer from their loved ones. Marella’s mother supported her decision to breastfeed. Kay’s close friends and family also know her HIV status and supported her decision to breastfeed. Emily spoke to her partner and family about what decision to take.

Emily spoke with her partner and family before making the decision.

I discussed it with my partner and then my family back home, I came to conclusion that for the safety of the baby I will not breastfeed, I will not breastfeed, I will bottle feed and then they said that they have a, a charity that they give, give baby food to people in my condition so I was also very glad to hear about that so that helped.

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For Sinead, Holly and Tina, a few close family and friends know. When Eriife decided to breastfeed her baby, her family and friends gave her breastfeeding advice in the first few weeks of her baby’s birth.

Women like Camille, Holly and Tina have only a few people who know their HIV status and with whom they have shared their feeding decision. As with Camille’s experience (below), keeping one’s HIV status secret can be stressful when there is a baby to feed, but supportive friends can help.

Camille’s friends protected her when another friend asked why she was not breastfeeding.

One of my other friends, when I had my son she was at home, thankfully that day and one of one of my friends came here and then said “Oh [participant name], I’ve never seen you breastfeed this baby” and my friend who is also like me said “oh really, you have not, I’ve seen her countless of times” so that just shut her mouth [laughs]. So she was there at the right time to answer questions, she said “no I’ve seen her many times so you’ve not had the opportunity to see.”

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Managing questions and suspicions from family and friends

Women whose family and friends did not know their HIV status sometimes had to navigate questions about their feeding choices. Stephanie recalled asking her doctor for advice on how to deal with her loved ones asking why she was not breastfeeding. Her doctor suggested some medical-sounding reasons, such as the baby arriving early, to stem the enquiries (and they worked). Like Stephanie, Amy also thought of things to say before she had even given birth, because she knew she would be asked. Sinead told people she was not breastfeeding for health reasons, while Layla told those who asked that she “wasn’t producing enough milk”.

Still pregnant, Amina was especially concerned about how she would manage her mother’s questions, given that she lives at home with her. Her mother-law was also planning to visit. Amina expected they would want to guide and support her to breastfeed and was not sure how to handle that.

Nozipho’s and Biola’s partners do not know their HIV status. Nozipho was born with HIV, so some of her family know her status. When she was pregnant, Nozipho had talked about her decision to breastfeed. However, maternity staff gave her baby formula milk on the maternity ward when her milk was slow to come. Since this had happened, the maternity staff (incorrectly) advised her that she could no longer breastfeed her baby. Nozipho’s partner does not know her HIV status so asked her why she had ‘changed her mind’ about breastfeeding.

Marcy’s doctor helped her think of things to say to others when they asked why she was not breastfeeding.

Sometimes you just say, “Oh well big baby’s already six months?” I say, “No we stop like four months ago, we stop when he was four.” I just look for one excuse or the other because if you, if they notice you’re not breastfeeding they will kind of ask, “Why? Are you sick?” The doctor tell you, those questions are really usual for you to answer so I just look for one excuse. Yeah I just remember now, because I remember I told my doctor when she was when I was worried, she was said, she was saying, “Okay you have any reason why you want to breastfeed and apart from the bond and?” and I said, “People will ask questions, people will say why am I not, what am I going to tell them?” and she just said, “Just tell her you have I can’t remember the name of thing she said that you are on antibiotics so you can’t breastfeed baby for now.” They already know when you’re taking antibiotics, you can’t breastfeed, so she gave me that option of lie to tell people if they ask but that’s my first, that was what I was saying for my first child.

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We found that women of African and Asian heritage received more questions about why they were not breastfeeding compared to White women (see also Social Identity, belonging, stigma). Diablo told us that the questions make her sad. A few women who formula fed talked about how they felt guilty about not breastfeeding their babies, and people asking questions reminded them about it.

Rachel’s baby had donor breast milk in the hospital but didn’t tolerate it well so was put on formula. She felt it was her fault that she couldn’t breastfeed.

Then she was having donor breast milk in the hospital, so I had to give consent for that because it’s something they ask me for because she need nutrients and to put on weight, so they were weighing every option. At that stage, when she was so they asked me, I gave my consent for it. I know how I felt that day the very moment I gave my consent for that. I felt that I would I felt that I disappointed, I’m disappointed in myself like I did I caused this for her. She’s not meant to go through all of that. And this, I know it’s something that you can’t, you can’t avoid, some of these things around you can’t avoid it, even if you can’t avoid it but they are just ways you can get them without me knowing that this is the situation.

So, I felt really disappointed in myself that I put her through this, and I let her go through this because when you see other mummies there expressing and taking it for their babies, put their stickers name on them, put them in the freezer and for me I can’t do it. They had to use a donor one for her, which really breaks me down like. It really breaks me down because that let say there was no virus or anything. Even if it’s three months, I’ll be able to give it to her for three months actually I know my mind is at peace she has something from me for that three months, but that never happened. So, me giving my consent for the donor one was really now heart breaking for me but, at the end of the day, I did it, but she was not reacting to it properly, what they wanted her, so they took her off that one and then started giving her some other form of nutrient.

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Despite being of South Asian and African heritage respectively, Amina and Maya said that being young and growing up in the UK meant that there would not be less pressure and fewer questions from people than in other settings. As described above, Amina was mostly concerned about meeting the expectations of her mother and mother-law. Meanwhile, Maya believes formula feeding “wouldn’t raise any flags” among the people who are not aware of her HIV status. She comes from a big family and her older sister has experiences with breastfeeding and formula feeding, and many of her friends have formula fed.

Amina is early into her pregnancy and is worried about questions from her mother and mother-law.

This is something that I’m worried about in within my household because I think, I live with my mother. I think outside of my household, I should be fine. Just living with my mother, I know she’s breastfed, you know. Just living with her, it’s going to be a bit annoying. I just want to get out and kind of move on because she, I think she will try to, like she will actually tell me, “Just try, just try.” Or like I knows there’s excuses again because I think it’s more like nipples being cracked or something, I dunno you know, the way the liquid comes out but there are reasons I can tell people, but my mother will kind of, if she sees me especially I’ll be living with her 24/7 I know she’s going to be looking after, helping me look after my child, she might be like, “Oh just try.” Or like, “I’m here, don’t worry, just try.” She will try and support me and it’ll be a sweet thing for her to try but I will get that pressure from just my mother I think. I think no one else. My mother-law, she might be coming to this country like to see the baby so that’s going to be another pressure. Yeah, my mother-law is really old school but yeah, so there will be pressure from my mother and my mother-law but no one else.

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