Seeking support, advocacy, and HIV organisations

This section looks at the experiences of those who sought support during their pregnancy from either medical staff, HIV organisations or other mothers with HIV, and their experiences of advocating for the choice to breast or formula feed. The women we spoke to described differing levels of success when seeking support and advocating for themselves. These experiences are captured within the following topics:

  • Educating oneself and other people
  • Decision making and self-advocacy
  • Support and HIV networks

Educating oneself and other people

Education was a key topic discussed by the women we spoke to: Lana, Swelihle and others felt there was an uneven level of knowledge about HIV and breastfeeding in the UK among mothers and pregnant women, and their medical teams. Amy and Sinead were not told by their HIV doctors that they had an option to breastfeed (although Sinead said she would still have formula fed to remove all transmission risk). When Marcy found out she could have breastfed it was too late, having already given birth and joined a support group for mothers with HIV.

Sasha and Amy believe that all medical staff need to learn how to deliver care to people with HIV. Sasha found it frustrating when her midwife told her that they would learn from her because they had never had a patient with HIV. She would ‘come away feeling drained’ from continuously educating others. Many people with HIV, even outside of maternity care, have described the ‘ping-pong’ effect where non-HIV medical staff keep sending them back to their HIV consultants because they do not know enough about HIV themselves. Visit Conversations with HIV clinicians about infant feeding and HIV and experiences with maternity care and non-HIV healthcare professionals, to hear more experiences.

Amy thinks that there should be more training for all medical professionals on how to deliver care to people with HIV.

I think it would be nice if there were more training for all medical professionals regardless of, you know, what field they’re in that they could obviously you can come into contact with HIV positive people in any kind of field it just would be nice to have a bit more training for them on some facts and how to, what to do what not to do, what to say.

Embed Print Transcript

The women we spoke with reported different levels of awareness among medical staff, which meant that many of them were given contradictory information on whether they could breastfeed. In some cases, the subject was not even raised. Biola breastfed her baby with the support of her medical team, but recalled speaking with another mother with HIV, who had been told she could not.

When Biola told another lady she breastfed the women was shocked as she had been told she could not breastfeed.

But when I go for the group, like recently I gave birth with another lady. So, we were talking about this in [HIV organisation]. So, when they find out that I was breastfeeding they were shocked you know. “How come you breastfeeding like we’re all from [hospital]?” I said “I I’ve asked the senior at [HIV organisation] at [hospital]. You know, they supported it they didn’t have a problem.” That lady told me that she was told not to breastfeed at all, you know. It was opposite of my story. So, they were all shocked that, how come, you know. I said, “I don’t know but it came from them.” It came from me, but they supported with no story or anything. So, I never had any problem with anything from at all. Wherever I go, it’s, I’m satisfied.

Embed Print Transcript

The information the women were given had significantly affected how they chose to feed their babies. For Sandra and Pauline, being told their babies would need frequent blood tests if they breastfed informed their decision to formula feed. The general lack of clinical research on HIV transmission through breastmilk also influenced Pauline’s decision to formula feed, despite her original desire to breastfeed.

Pauline decided to formula feed her baby as she would find the monthly hospital visits too stressful (played by an actor).

Well before I got pregnant, I thought I could breastfeed but I think around 8 months in my third trimester I realised that breastfeeding was a lot, it was gonna be a lot of stress for me and the baby so the best option was to formula feed and that there wasn’t enough evidence out there to show that I cannot pass, I cannot pass it onto her. I looked online, I read a lot online that is advisable to formula feed but if I wanted to breastfeed they can support you through it and make sure I don’t pass it into the baby, but I wasn’t ready to go through that stress going to the hospital every, every month or two months. So, I just decided to formula feed.

Embed Print Transcript

Many women wished they could have engaged in more detailed conversations with their medical team about the pros and cons of breastfeeding versus formula feeding. Some felt their care was not joined up, and that contributed to feeling like they had not being listened to. They said these problems, stemming from low levels of awareness about HIV, extend beyond conversations about infant feeding. A few women felt they had met too many medical staff who still held outdated views about HIV.

Sasha felt discussions on feeding options should happen at 20-25 weeks of the pregnancy.

Can I ask you a bit because I found it really interesting you were saying about actually doctors, the healthcare team needs to have these conversations about feeding options, when do you think that that should happen and how?

I think once baby is established that the pregnancy is going well so we have obviously had our 12 week scans which tells us that the baby’s there and it, you know, that you’re three months pregnant that’s when people tell you, you don’t really tell people that they’re pregnant because that’s usually when you find out if the pregnancy has gone ahead if the pregnancy hasn’t, if there’s any issues. Obviously, however, you do sometimes get issues between 12 weeks and 20 weeks because on your 20 week scan other things can arise like heart problems, spina bifida and all these things so I think for the mother to actually absorb it and understand it I think 20 weeks to 25 weeks because most babies are born from 28 up that survive are usually 28-40 so at least if they’re having a I think around between 25, 28- 30 weeks they’re ready.

Embed Print Transcript

Women also wished that medical teams caring for pregnant women with HIV would take time to remind them about the hopeful and happy aspects of having babies and raising children. Information about the risks of HIV transmission through breastmilk and the peace of mind from formula feeding, could be extended to also include discussion about the positive emotional benefits of breastfeeding.

Sherry’s children cheer her up during her darkest moments.

It’s difficult but I just want people to be strong in a situation where you find yourself like this. The most painful part of it is that I don’t even know where I get it from. Not sleeping around, I was married. My husband was negative. I was positive but I just want everybody out there to be positive about their life. They still have one more life. We just have to be kept your safe and talk to the right people. Do away with some friends but you know they are so loud, they are so inquisitive, they are so nosy. Do away with those kinds of friends. Stick with your family and things will be fine. It’s a little bit difficult but with the right people, with the right thing, you’ll be just fine. You will be like every other person. I just wish you could see my picture; see me how I look, you’ll understand what I mean. In your darkest moments you can be so down and be low about this, something that will cheer you up. You must have something that will cheer you up. My children cheer me up when I see my children I smile, when I want to cry, I cry on their shoulder. I cried a lot, we cry together, but they don’t know what I’m crying for, but I cry with them, and they just tell me, “It’s okay mum,” and they take me a very long way, “mum you’ll be fine.” It kept me going, it kept me going so I believe everybody out there can do the same. You look for something that makes you happy, do it. Do something that makes you happy. Don’t do things that contradicts you, your status again, don’t share it, don’t give it to people. As long as you are taking your medication, you can’t give it to anybody. No, I don’t believe that. Look after yourself and be strong. You can do it. That’s just my advice to people.

Embed Print Transcript

Decision making and self-advocacy

Being well-informed can be beneficial in clinical appointments but Kay, Marella and Lana felt that they needed to be ‘armed’ with information about the UK guidelines and the research that they are based on. Some women anticipated that conversations with their medical teams would be difficult, so felt the burden to be being well-informed about the BHIVA (British HIV Association) infant feeding guidelines in the UK.

The women who wanted to breastfeed, recalled that their wish was at odds with the opinions of their medical staff. Diablos was told she shouldn’t breastfeed, even when she expressed an interest. This was the same for Lana who felt that her medical team were discouraging her from breastfeeding. For women who found themselves in similar positions, educating themselves on the BHIVA guidelines and the literature surrounding breastfeeding with HIV helped them to advocate for themselves. Lana advocated for herself by seeking information about HIV and breastfeeding, and raising questions with her medical team, even though her husband felt that it made the appointments uncomfortable.

Marella and Sasha decided they wished to breastfeed their babies and sought support from their medical team, early on in their pregnancies, on how to do this safely. Marella even found a private lactation specialist who supports mothers with HIV. Sasha ‘guided’ the conversation on breastfeeding as it was not brought up by her doctors. Ultimately, she decided to formula feed her baby due to the lack of clinical research on HIV and breastfeeding in the UK. Although her HIV doctor was supportive, Marella’s paediatrician actively discouraged her from breastfeeding and had told her to not be ‘stubborn’ if breastfeeding didn’t work out.

Sasha guided the conversation on breastfeeding with her doctors.

And can I ask you who started the conversation, were you told that this could be an option or was it you that was saying “actually, I wanna consider breastfeeding, what are my options”, who started it?

It was me I wasn’t even asked about it, it was me that was going in with lists, going “right, I want to breastfeed but obviously even though I’ve been to the medical conferences we don’t have enough research on this”. And what about if I just did the first week, what about if I just did this, what about if I did that, the other thing that happened afterwards and as I say the clinic didn’t actually guide it all it was me that guided it.

Embed Print Transcript

Support and HIV networks

Among the women we spoke to there were mixed opinions about going to peer support groups and meeting other people with HIV. For instance, Diablos said meeting a support worker helped her accept her diagnosis, whereas Holly chose not to attend any support groups because she preferred not to think about HIV status. Anonymity and worries about meeting someone they knew was a strong concern among some women.

Diablos found acceptance over her diagnosis after being recommended a support worker by her doctor.

Because I been with this group, it’s now like that’s where I got to learn about HIV. People who living with HIV, we can have kids, you know we can live a normal life. That’s where I got, I have my safety when I’m around those building. We have so much to learn about ourselves.

Mm, I think it was that 2017 if I’m not mistaken. I think it was that time, because when I went to the first day, I went to [Name] Wing, because you know when, yeah. One of the doctors they is one recommended me to, in fair she didn’t recommend she called [support worker], to there I had this patient here and then gave me directions and I went there. That’s where I made my freedom out of this horrible, horrible disease.

And how was it freedom?

You know, acceptance, I had to accept myself and you know what, this is me, there’s nothing I can change about myself. This is the people who are like me so, the people don’t care.

Embed Print Transcript

Among the women formula feeding, some had accessed free formula through HIV charities and support groups. Formula can be expensive and therefore some charities and HIV clinics offer supplies of formula to those in need, to help reduce the financial strain. This had been vital for Danai, who wouldn’t have been able to afford formula without this support. She said she would have had to take the ‘risk’ of breastfeeding her twins instead.

Danai would not have been able to afford formula without the help of a HIV charity. Formula milk is, can be expensive so has it been like a good thing that you’ve been able to get it for free?

Yeah, yeah yeah.

Yeah?

Yeah, that’s because I saw in the shops it’s very expensive.

Yeah.

I was never going to manage formula, I was not going to manage, if they said you pay, I think I was going to breast feed them, I was going to take the risk but as they told me that it’s free that’s why I decided to give them the milk.

Okay so if, if you have had to pay for formula you, you would have breast fed?

Yeah, because one tin is £10.99 so about the, I count the amount they give us I don’t think I was going to manage I don’t think [laughs].

Embed Print Transcript

Some of the mothers we spoke to said there needed to be more support for mothers with HIV, especially social care and mental health support for those who are newly diagnosed, or without support networks in the UK. Several of the women we spoke with were born outside the UK, with only a few family and friends living locally.

Amy feels there needs to be greater mental health support for newly diagnosed pregnant women (played by an actor).

I think there should be something out there a bit more until they catch up with changing the perception a bit there is always gonna be that shock factor and that adjustment period and I was, I was shocked to find that there was nothing, I don’t know if that’s the same in every area but there’s nothing here it’s just “here’s your diagnosis and off you go home, bye”. So yeah I think that’s another thing that they should possibly look into to help, especially mothers as well, especially pregnant women newly diagnosed if it is, it’s, there’s not really any kind of support as far as, I think our whole mental health system is a bit knackered in this country anyway but certainly yeah there’s lots of holes in the system I think with the care of HIV positive people especially pregnant women or new mums. Yeah so, a lot could be different, but we’ll get there one day hopefully.

Embed Print Transcript