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.

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.

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).

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.

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.

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.

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.

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?

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).