Experiences with maternity care and non-HIV healthcare professionals

This section explores experiences of care around pregnancy and infant feeding from non-HIV specialist healthcare staff, including health visitors, nurses, midwives, hospital doctors, GPs and lactation support staff.

Topics discussed in the section include:

  • Challenges of moving between HIV and non-HIV healthcare staff
  • Positive experiences: respect, equality and partnership
  • Negative experiences: judgment, discrimination and carelessness
  • Infant feeding advice and support from non-HIV healthcare staff

Challenges of moving between HIV and non-HIV healthcare staff

Women told us that it was sometimes difficult receiving care from multiple different healthcare services during their pregnancy. Maternity teams knew a lot about pregnancy but did not always have the same level of knowledge about HIV. In some situations, this meant that they had to educate staff about HIV. Sasha had a good relationship with her health visitor but felt that she was always having to teach her about HIV. When LeaSuwana went for her regular antenatal appointment, the midwife stopped the consultation when she realised LeaSuwanna was HIV positive. She incorrectly thought that all LeaSuwanna’s blood tests were meant to be done through her HIV clinic, however LeaSuwanna tried to explain that regular appointments (e.g. an antenatal appointment) were not supposed to be done through an HIV clinic, but through the appropriate medical staff.

Sasha wanted information from her maternity doctor about breastfeeding but was continually referred back to her HIV consultant.

So, the first thing I wanted to talk about was breastfeeding, so I’ve always been told in the past that breastfeeding is dangerous that you can’t breastfeed even when undetectable blah de blah de blah, but then because of all the stuff that I had done with, working with HIV I now know we can breastfeed with HIV but the research into it isn’t existent in the UK. So, my thing was I was writing all my questions down I was going to the maternity doctor consultant and saying right I would like to breastfeed, she was like you can breastfeed, I was like fab, so what do I have to do if I breastfeed? She said you need to speak to your HIV consultant, right okay. Spoke to the midwife as well kind of got the same response, “I don’t know if you can breastfeed no-one really, we don’t really know much about HIV we leave that up to the consultants to discuss that with you, then kind of we learn with you because we don’t see many HIV patients” and I said, “that’s totally understandable if you don’t see HIV patients how are you meant to know about it” but then this comes into the criteria of why are you not being taught about it.

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Another issue was that non-HIV professionals sometimes referred people back to HIV services for non-HIV related issues. LeaSuwanna was frustrated to be passed between midwives, sometimes in the middle of an appointment. Women said they would have preferred their issues or questions to be addressed by the health care professional they were speaking with, rather than moving between teams. They wanted to be treated the same as everyone else in maternity services, with confidence that staff would also have relevant knowledge about HIV and pregnancy.

Layla felt that her GP was sending her back to HIV services for care they could deliver themselves.

I guess the worst experience was with my GP all the time because they don’t, they’re not aware, they’re not familiar with HIV so they’re quite happy just to send me back to my consultant, my HIV consultant. Even with things like, because I suffered a lot with thrush during pregnancy, they kept on sending me back to the HIV team, which I thought actually something that they could really look into it rather than me having to see the sexual health clinic which is, which comes under my HIV clinic as well. So I think there’s a, I don’t know there’s isn’t a lot of understanding in GP surgeries around HIV I mean you’re lucky to get somebody who has had some experience with patients with HIV so I guess that’s probably due to the, where I live? I don’t know. There isn’t that many cases of people living with HIV.

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There were also issues about how information was shared between different services. Sasha wished all her information was in one system while she was pregnant so that she did not have to repeat herself when she was with different medical staff. In some cases, maternity services couldn’t access information from HIV services because of confidentiality. While there were benefits to this, in terms of privacy around HIV status, some people we spoke to wished it was easier for staff to share information if they, as patients, had given their consent.

Positive experiences: respect, equality and partnership

Despite the challenges of moving between different services, many people we spoke to described positive experiences of care from non-HIV healthcare professionals. Joyce felt ‘lucky’ because her health visitor was ‘the best’. Stephanie said she was ‘surprised in a positive way’ that most of the people involved in her care were ‘really helpful’. Things that contributed to good experiences were:

  • Staff learning about HIV to provide more appropriate care
  • Being treated the same as everyone else in maternity services
  • Having and following a birth plan

Marella lives in an urban area and believes that people living in cities receive better care because medical staff there are more familiar with people living with HIV and the latest medical information. Sinead was pleased that her GP had enough knowledge about HIV to be able to offer advice while she was pregnant. People with complex pregnancies also sometimes felt they received better care because they were often interacting with specialist midwives. Tina felt the hospital made her feel comfortable and appreciated that staff followed her birth plan and maintained confidentiality. (You can read about what people said about their Conversations with HIV clinicians)

Tina was with a specialist midwife team because of having twins and felt the care was fantastic. She had no worries that her diagnosis would impact care.

I was under a specialist midwife team because of the multiple pregnancy and the care was just fantastic absolutely no concerns about you know, people being worried about my diagnosis right through from all of the tests that I had to have during the pregnancy, the delivery which obviously was caesarean and you know, with about 20 people in theatre because the boys were so early and aftercare, just absolutely no, yeah you know no worries from me about the people sort of thinking or worrying about my diagnosis.

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Something that was important to people we spoke to was being treated equally to other parents. When they talked about good care this was often strongly connected to feeling that they were being treated like any other mother accessing maternity care. They wanted their HIV diagnosis to be recognised but not to overshadow their birthing experience.

Emily felt that she was treated equally and that staff were welcoming.

Oh no I would say I didn’t-, it’s not, I didn’t have any ill treatment or something like that throughout my antenatal, I was treat, I was treated in very equally and good, everyone was okay, nobody. My midwife and the doctor and I were going through the, all, they treated me well. They asked if I’m okay. There’s nothing wrong with me. I never, I never, they never did anything for me to felt that maybe because I am this, that maybe they be treating me this way or that way. So and during my delivery, it didn’t even occur to me that I’m being treated differently because I am that or that so the people here, the people here are very good they are very welcoming, that went very well, yeah so.

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Women spoke about getting support and advice outside of their medical team. Marella, for example, wanted to breastfeed and privately found a lactation consultant to give advice about breastfeeding.

Marella was pleased that her lactation consultant did their own research about HIV and treated her the same as any other mother.

So, I sort of want everyone in place before. But I just know who to call on. And we found a lady who, she’s not specifically like HIV within those services. She’s just a woman who’s really passionate about breastfeeding and lives locally to me again, which is useful. So, she can just pop over if needed. and she was saying that again, she’s not supported any woman with HIV. However, she’s actually the model is the same. That fact that I have HIV shouldn’t be any different because what we’re trying to achieve as a successful breastfeeding journey the issue of and she’s now doing her own research in terms of – and the funny thing is I was more scared for her to go do her research and then come back and be like “Whoa, you know I said, actually, far too risky babes, so I’m not doing it.” She came back and said, “By the way, I’ve read loads. I’ve you know, I’ve read all the things that you told me to read and done some additional and actually it seems like you know, I’m gonna treat you the same as any other mother. But we’re just not gonna leave things, you know, to chance”. But people who find a lactation consultant want additional support anyway.

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Negative experiences: judgment, discrimination and carelessness

Some women we spoke to recalled difficult and upsetting experiences with non-HIV professionals during their pregnancy and birth. These experiences were often connected to:

  • Staff having limited HIV knowledge
  • Being discriminated against because of HIV status
  • Carelessness around HIV disclosure

Some women reflected that their experiences could have been improved if staff had better knowledge of HIV. Nozipho wished that the nurses looking after her would ‘try and know all the ins and outs’ of HIV.

Camille felt better supported in breastfeeding decisions by her main midwife who had more knowledge about HIV. She thinks other nurses aren’t trained to deal with HIV.

I don’t particularly blame the nurses because they’re just, they’re just doing what they believe is safe for the baby isn’t it, so they’re not trained to deal with things like this because it’s just general, so if for example the nurses who have a bit of background about people who are HIV positive I don’t think they would have just dealt with it the way it was dealt with no, I believe that if they were trained they would have obviously given me a bit more support. I know how busy it can be on the wards even while I was there I can see how busy like nobody has that time to be patient enough to say ‘okay, let’s wait’ they just want to do it now and get along with it, you know, so the support obviously wasn’t there and because it was out of, I believe that my main midwife out patient, if she was there she would have supported me a bit more because she understands because that’s her speciality, isn’t it, she was with me along the way to say ‘yeah, if you want to breastfeed’, so she was there to support.

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A few women were worried that limited HIV knowledge meant they would be discriminated against by non-HIV healthcare professionals. Marella’s biggest fear was that she would be educating her medical team about HIV even while she was giving birth. Amy described struggling to trust non-HIV staff ‘because they just don’t know what they’re supposed to do’. She recalled midwives looking confused while reading her notes during labour, which led her to have a panic attack.

Pauline was upset by one nurse whose behaviour made her feel as though her blood was contaminated. The nurse acted this way in front of her mum, who didn’t know about Pauline’s HIV status (played by an actor).

There was this particular nurse who was supposed to come and take my blood, and as soon as she got into the room it was right after birth, as soon as she got into the room she just went ‘Who is this’, that was to my mum who was sitting there and I’m like, ‘my mum’ and then she went “Oh okay”. But the way she was getting my blood [laughter] so my mum questioned it, my mum just went to me “What is wrong with your blood, because of the way she’s touching you”, because she made my mum suspicious because she went to me, “Why is she touching you as if your blood is not good” and I’m just like “I don’t know”.

And that was the only time I felt treated in some, some kind of way because of who I am or what I’m going through. But other than that like everybody treats me normal, like I’m not being treated special. The way she put on gloves and she was like touching me as though my blood was contaminated [laughter] and she was a midwife and not a white midwife, she was black so I’m like you don’t treat your people like that, but I wasn’t, yeah she wasn’t nice to me, she was the only one to do that.

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Some women spoke about times when they were discriminated against because of having HIV. This included people not wanting to be in contact with their blood and making assumptions about how they came to be diagnosed with HIV. Holly talked about how a midwife ‘grimaced’ when she said HIV, and Emma remembered that some staff gave her a ‘wide berth’ until she explained some the key facts about HIV to them. (You can find more information about laws to protect people living with HIV from discrimination)

Holly found it frustrating when she met a midwife with who held negative attitudes about HIV (played by an actor).

And I had to kind of help her along a bit with approach and things and kind of like, kind of have to just try and make it less of a big deal, so yeah it wasn’t great doesn’t kind of fill you with confidence when your midwife speaks to you and can’t quite process HIV. But that’s just what it felt like on my side. I think she had the associations with people that might have got HIV and how they might have got it and so I think it was to do with social standing and I don’t think she could place me about where I came, like in society, I don’t know. So, the thing is she was having like a computing issue in her brain about how to talk to me and how obviously very negative associations with HIV, whereas because of course I’ve come to grips with it to a certain degree and she was like grimacing every time she said HIV.

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Another area of difficulty for people we spoke to was trusting that staff would maintain confidentiality about their HIV status, particularly when they had chosen not to share this with close relatives. Nozipho remembered being concerned that staff would talk about her status in front of her partner.

Biola’s health visitor asked her questions about medication in front of her partner, who didn’t know her status.

When I give birth, you know this health visitor who comes to the house. The ones that saw me and they open their computer that time, their computer that day. The dad was sitting here. Now the other one, she did not read much I think. And she went like “How are you doing with your medication? “Are you [inaudible].” Me I went like, “What medication? I’m not taking any medica-, you know.” The other one, look at the other one, she went quiet. The next day they came back and apologise. Luckily they did not mention, and me, I question myself, “What are you talking about, what medication?”

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Infant feeding advice and support from non-HIV healthcare professionals

Women had mixed experiences of receiving support and advice about infant feeding from the non-HIV healthcare staff supporting them. Gracelove had felt supported in her decision to breastfeed by HIV staff, but was advised not to breastfeed by the non-HIV specialist staff involved in her pregnancy. Some women we spoke to said that staff did not understand the BHIVA (British HIV Association) guidance.

Marella’s paediatrician told her to not be stubborn if she is unable to breastfeed, but her specialist midwife was supportive.

During my meeting with the paediatrician, she had actually said to me that, you know, “If this doesn’t work out you need to not be very stubborn with it.” and I said, “What do you mean by stubborn?” and she said, “Well because for a lot of people, even, you know, those without HIV, breastfeeding doesn’t work out and, you know, you can get sore nipples, cracked nipples, you know, I even have babies who come into my clinic that are malnourished because they have mums who just didn’t wanna give in to giving them formula.” And the midwife who was in the meeting as well said, “Oh come on like that’s not that’s not that common,” and the doctor, “Oh no I do get mums who, really, really don’t want to give in to giving a bottle or giving a whatever,” and I said, “like, I said, “I’ve done my research, I know that things, it’s not easy but I’m prepared to sort of try my best”. I don’t think I even responded to the comment about not being stubborn but I said, you know, “I was prepared to work hard to sort of make it happen and at no point would I give in to mixed feeding because I knew that was a sort of a no-no,” so that meeting annoyed me.

And again, I was handed a paper copy with the BHIVA guidelines and I said that they could keep them because I already them printed and yeah giving them to me at 39 weeks if she thought that was the first time of reading them felt very, very late and very silly and I was very annoyed by the meeting if I’m very honest with you.

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As formula feeding is still encouraged in the guidelines, women who choose to formula feed need to be offered medication to stop lactation. Not everyone we spoke to received advice about the range of natural and medical options for stopping the body producing milk. Sandra’s midwife explained what was available and she chose to take medication. Joyce was not told that there was a medication that could stop breastmilk, and Amy asked for medication, but staff were reluctant to give it to her. Other people, such as Marcy and Camille, wanted a choice between medication and letting breastmilk stop ‘naturally’. Marcy was ‘tired of things going through my system’.

Camille felt she wasn’t given a choice about whether to take medication to stop her breastmilk.

Yeah it wasn’t a problem, he brought it yeah and I love it when things happen to me naturally I’m a believer of natural things, I remember they gave me tablets to dry up the milk and I have a choice isn’t it, I didn’t have to tell them that I just threw it away and let it dry up naturally, you know, you can’t just play with people’s bodies like “take this, do that” I can choose what I want to do, so I threw it away and then once your, don’t breastfeed it stops anyway, I don’t have to take anything to dry up anything, but I didn’t bother to explain to them I just had the choice to throw it away and just let the natural process takes its course, so that’s what I did, so yeah.

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For those who decided to formula feed, there was also inconsistent information about whether parents should bring their own formula milk or whether it would be provided free at the hospital or via their GP. Veronica knew from her first birth that the hospital would provide her with formula. Some, like Sherry and Joyce, were asked which brand they preferred, and Maya had her formula milk choices written into her care plan. Others, like Diablos and Sasha, found it difficult to access free formula milk on the maternity ward. Sasha found the information before going to hospital confusing.

Emily was given formula milk by her HIV clinic.

Oh, the hospital were giving it to me. Before delivery, during my antenatal visit, they told me that the hospital, I don’t need to bring to the milk to the hospital because they provide it, they provide it for the babies so I don’t know that it was, they were giving it to me from my birth until I was discharged.

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A range of HIV clinics and charities provide free formula milk for mothers living with HIV. HIV clinics can refer people to the charities. The 4M Network recorded a webinar with tips on how to have a good relationship with your medical team (See Resources).