A Canadian study aimed at researching the attitudes of mothers living with HIV has found that more support and education is needed around the recommendation to bottle feed their infants. This is particularly true for women who have moved to wealthy countries from low-income countries, where infant care is completely different and women are told to exclusively breastfeed for six months, as per World Health Organization guidelines.
Previous studies have focused on the feelings of loss experienced by women who are unable to breastfeed, fears around involuntary disclosure and the ethics of allowing women to breastfeed when there is the potential of HIV transmission to the infant.
The aim of this study published by Dr Sarah Khan and colleagues in the Journal of the Association of Nurses in AIDS Care was to understand women's lived experiences to guide better clinical care and propose solutions to problems with infant feeding.
In total, 12 women participated in two different focus groups, with four women involved in both discussions. They were recruited in Toronto by community-based organisations and word-of-mouth. Their ages ranged from 20-40 years old and ten were born in Africa or the Caribbean, while two were born in Canada. All of the women had experienced pregnancy and delivery in Canada within the last five years and eight had also experienced pregnancy and delivery in a low-income setting. The study participants were encouraged to read the manuscript prior to publication, to verify the findings.
Migration and cultural differences
In low-income countries, the World Health Organization recommends breastfeeding for women living with HIV because of the lack of clean water and formula milk, which could lead to infant death through malnourishment and infection. In wealthy countries, formula feeding is a feasible option and does not carry the potential risk of HIV infection from mother to baby so is recommended instead of breastfeeding.
However, some women who had migrated to Canada were sceptical of the advice to bottle feed to reduce HIV risk:
"Right now, in my country it is zero for those who follow the guidelines for exclusively breastfeeding for 6 months; their children turn out negative."
This disconnect between the advice they were being given in Canada and their previous lived experience created confusion. There were also some false beliefs about breastfeeding in Canada:
"I am told in Canada I will be in jail because it is not allowed."
Many women felt that their ability to make informed decisions had been taken from them by having their baby in Canada. It was felt that healthcare providers were not making a recommendation but instead telling women what to do.
One participant said of her feelings about Canadian healthcare providers:
"They're just kind of like, it’s the way it is so just do it. And we’re not giving you an explanation. Just do it. And it’s not very nice.”
Effects of bottle feeding
Some participants described the psychological burden put upon them by feeling that they had not been given the opportunity to breastfeed, which extended beyond the time for which they were bottle feeding. Concerns were expressed by some women about long-term negative effects on their children, such as a lower intellect and difficulty in forming romantic relationships. One woman explained that she felt her daughter's behaviour was because she had been bottle fed:
"Anything she tries to do which goes another way, my mind says oh it’s because she never drank. Psychologically it’s something that is still with me."
Mothers experienced difficulties with children wanting to breastfeed but they had to refuse them. One of the participants discussed her feelings when her daughter wanted to breastfeed, having had previous children who caught HIV perinatally.
"I am so angry. Take your hands off. If you know what these breasts have done to your siblings, you will not play with it."
Some positive aspects of bottle feeding were also discussed. For one woman, her HIV status enabled her to bottle feed, which would have been her choice either way.
"It actually became a benefit that I had HIV and couldn’t do it, so no one pushed it on me."
Many women also described how their bottle-fed children had thrived, opposing the previously mentioned idea that children who are bottle fed are going to be less intelligent than children who are breastfed.
Many solutions to the issues surrounding infant feeding were proposed. The risk of vertical transmission of HIV from breastfeeding needs to be explained, particularly in the context of those who are virally suppressed. Differences between advice in different countries need to be discussed, as one woman put it,
"You come here, you breastfed two kids back home, and here you are not going to breastfeed. We need to understand. We need to talk about it to accept it."
In order to do this without subjecting women to repetitive information, a 'pregnancy passport' was proposed, which women could take with them and healthcare providers could mark it once they have given out information, to avoid unnecessary repetition.
Better information resources on formula feeding are needed, as women felt that resources were lacking in this area, compared to breast feeding. Information in different languages or with pictures could help women to feel more confident bottle feeding.
"When you have a child, they don’t have 'how to bottle feed your child' classes… Some people have never even held a bottle to a baby’s mouth before."
Delivering bottle feeding information in such a way as to prevent accidental disclosure of HIV status was also felt to be important. It was suggested that delivering this information at home could help women maintain privacy.
Women wanted more choice over infant feeding. For women who were bottle feeding, options like donor milk from other women or medicine to stop breast milk production should be offered. Although many women said they would not want these options, they wanted to be educated about them and be allowed to make those decisions.
The researchers concluded: "The greatest needs from women living with HIV related to infant feeding were improved education, counselling, and supports that prioritise transparency in choices and options available to women and their families."
Thankfully people are increasingly recognising the needs of women living with HIV to have better support around infant feeding. Earlier this month, multiple groups in North America published an Expert Consensus Statement on Breastfeeding and HIV, which can be found here.
Khan S et al. “It’s Not Easy”: Infant Feeding in the Context of HIV in a Resource-Rich Setting: Strengths, Challenges and Choices, a Qualitative Study. Journal of the Association of Nurses in AIDS Care, online ahead of print, 5 November 2020.