Feeding a baby while living with HIV
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.
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.
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.
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.
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.
Fatima felt well taken care of throughout her pregnancy by her midwife. When she was struggling with her mental health the midwife helped her to access support.
Fatima felt well taken care of throughout her pregnancy by her midwife. When she was struggling with her mental health the midwife helped her to access support.
I just visited the GP once but and the midwife I used to visit and she was like wonderful lady and the way they used to when they have taken me, care of me throughout my pregnancy and they have explained everything. I used to tell them everything, you know, regarding my fear, regarding my, you know, mental this thing which I was facing, you know, depression and all. I used to tell them everything regarding this thing, so they have referred me to the psychologist also which I’m taking decisions, you know, they have referred me regarding this thing, and they have helped me a lot with, you know, to cope with all those things.
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.
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.
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.
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.
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.
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).
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.
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).
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.
Emma thought most staff were brilliant, but some in the high dependency unit treated her differently and stayed away from her and her partner.
Emma thought most staff were brilliant, but some in the high dependency unit treated her differently and stayed away from her and her partner.
I mean the nurses and the doctors were absolutely brilliant to be honest it was just like a normal pregnancy apart from. I got high blood pressure so I had to have an emergency caesarean. The only thing I would say is after he was born he was in HDU and we were treated differently to all the other parents, definitely, seeing them kind of looking at us when they realised the HIV and kind of looking at us a little bit more, and I know they talked about us because I heard them talking about other parents so I know they talked about us, and people really gave us a wide berth, so that wasn’t great.
So, these were like nurses, doctors, the healthcare providers?
Not, not the doctors but the nurses, they was only like 20 year olds, you know what I mean, little girls, and some of them were really great but then like I say, some of them, you can just tell that they, as soon as they read the notes and read the status, obviously [name] had to have my baby had to have medication and you could see as soon as they read the notes, they’d look at us and they’d start looking up and down our arms for tracks….silly little things, but they would do it and they’d start treating you different for a few days until they realised things. I mean we’d explain the situation and they’d be okay.
Puleng felt alone and bullied during her childbirth and wonders if her race, nationality and HIV status impacted how she was treated.
Puleng felt alone and bullied during her childbirth and wonders if her race, nationality and HIV status impacted how she was treated.
When I was giving birth, I felt a bit bullied during the whole time and I wish I’d spoken up for myself, but I had no support, I had nobody backing me. I had a room full of professionals giving their opinions, others prescribing what needed to happen. I felt like I wasn’t consulted, I was just told. I don’t know if it’s because I’m a woman of colour. I don’t know if it’s because I am not of a British background. I don’t know if it’s because of my diagnosis but I felt kind of bullied at some point during my labour.
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.
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?”
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.
Gracelove had to continually educate her health visitors that she couldn’t mix feed her baby.
Gracelove had to continually educate her health visitors that she couldn’t mix feed her baby.
She was glad that I was giving her the right information from the consultant, so she said, “Oh she’ll, she’ll take note of that.” But then in no time she went away and then transferred me to another person and that person as well said the same thing, said the same thing that she wasn’t aware that we couldn’t mix feed. So, the message is not really being given to all the health visitors I would say.
Sandra was disappointed when a health visitor questioned why she was bottle feeding. She expected them to have better knowledge (played by an actor).
Sandra was disappointed when a health visitor questioned why she was bottle feeding. She expected them to have better knowledge (played by an actor).
I think the most disappointing thing was my health visitor because she wanted to know why I was bottle feeding and she said, “Why are you not breastfeeding?” and yeah with my friends and family I can forgive them because they’re just curious but as a health visitor she actually works in medical fields and she should know better and not ask questions like that.
Emma was sad not to breastfeed but decided she didn’t want to take any risks. She felt judged by staff who kept pressuring her about breastfeeding.
Emma was sad not to breastfeed but decided she didn’t want to take any risks. She felt judged by staff who kept pressuring her about breastfeeding.
I was sad because I wanted to breastfeed again but then I thought well it’s my choice and I don’t want to give any risk at all to my baby. Plenty of people bottle feed the only thing I will say is in a hospital there was a lot of nurses and doctors kept pressuring me into: “why aren’t you breastfeeding, why aren’t you breastfeeding, breastfeeding is best” and I had to explain to them over and over again why I couldn’t. Which was quite hard actually because they kind of judge you almost for not trying and then until they realise why you couldn’t. But you feel bad enough anyway not being able to do it without that added pressure.
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.
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.
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.
Sasha was confused by different information about whether she should bring in her own formula or whether she would get it at hospital for free.
Sasha was confused by different information about whether she should bring in her own formula or whether she would get it at hospital for free.
No-one, one person was saying oh you need to provide the milk and one person was saying you don’t so I said well do I need to provide the milk or don’t I need to provide the milk so which one is it, because with [daughter] they gave it to me on the ward. And then my friends were like yeah, yeah you have to take milk with you, I was like but I’ve never had to take the milk in and if I’m not allowed to breastfeed then that’s not my fault, so the ward should be providing the milk while you’re on the ward. So, the consultant was saying “yeah, yeah we give you milk” and then the midwife’s and that said “no, no you have to take it”. So I was just like I’ll pack a box just in case, so I packed a box and actually they did give me milk because I had my own and I used my own at first but because they kept me in longer than I expected, no they didn’t keep me longer than expected - no-one could answer the question, so I’d only taken one box and [fiancé] wasn’t allowed back in the ward, he was allowed in there for one hour, 9 ‘o’ clock in the morning but he was not allowed in the ward, so he couldn’t even bring me supplies. So then I said to them I’ve got no milk left, they said, “oh it’s alright we’ve got loads, I was like oh so you don’t have to bring milk in”, she says “no, what made you think that”, I was like well because nobody knew whether you had to bring milk or not”, I was like “I don’t know what I’m meant to do”. So, there’s a lot, there’s still quite a lot of issues within the feeding world and with just having a baby in general.
Diablos was incorrectly told to get a GP prescription for formula milk.
Diablos was incorrectly told to get a GP prescription for formula milk.
So when I was home, and I was having this difficulty with the GP, I had to phone them, because she had given me her number and said anywhere you have any problems, just call me. And I did, when I did she phoned, she said “Okay, leave it with me I’ll call you a GP” and you know, it was a, it was a team of people. I spoke with several team of people in that office, I don’t know where. They helped me eventually, the GP had told me It’s time to take my milk. It was a struggle, it was a struggle. Because the GP wanted to prove, proof of who told you, you can do that, and I had to like, lucky I had the number. If I didn’t, I don’t know what I was going to do.
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 the Resources page).
Copyright © 2024 University of Oxford. All rights reserved.