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.
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.
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.
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.
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.
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.
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).
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).
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.
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.
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.
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.
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).