Although most African women living with HIV in the UK do comply with medical recommendations to avoid breastfeeding, doing so comes at a high social and personal cost, according to qualitative research presented to the British HIV Association conference last week. There are considerable structural, cultural and personal barriers to formula feeding, reported Dr Shema Tariq of City University.
Whereas women living with HIV in resource-limited settings are advised to breastfeed their babies (because of the unavailability of clean water supplies), the advice in resource-rich settings is to bottle-feed with powdered milk formula. This reduces the risk of passing on HIV to the child, although in the context of antiretroviral therapy and an undetectable viral load, there are questions about how risky breastfeeding would be.
Furthermore, health information for the general population in the UK – which women living with HIV are frequently exposed to – usually states that ‘breast is best’.
Women who have grown up in African countries and have migrated to the UK or other western countries must therefore grapple with conflicting messages and expectations. Women frequently maintain significant social connections with other African people, both in the diaspora and their country of origin.
Very little research has explored the impact of infant feeding decisions on migrant mothers living in resource-rich settings (although a Canadian study was presented last year). Researchers in London therefore conducted in-depth qualitative interviews with 23 African women living with HIV who were pregnant or had recently given birth. In addition, six professionals (clinicians, midwives, voluntary sector workers) were interviewed.
With one exception, all the women were exclusively bottle-feeding or intended to. However women had to overcome a number of barriers in order to do so.
“That’s what really make me feel sad because our culture in Africa you’re supposed to breastfeed.”
There was a widespread expectation – from both the women themselves and from other members of their communities – that breastfeeding was an essential aspect of being a woman and a mother. There could be considerable pressure from other people to breastfeed. This didn’t just come from friends or relatives. If the baby cried, strangers on a bus could even forcibly suggest that he or she should be put to the breast.
Women feared that formula feeding would lead to unwanted disclosure of their HIV status. This could include disclosure to the baby’s father.
Most of the interviewees were extremely poor and formula milk was very expensive for them. Although BHIVA recommend that free formula milk and feeding equipment be supplied in this situation, resources were not always available.
When bottle-feeding, women frequently felt that they were missing out on bonding with their baby, and felt a sense of personal loss. Moreover many were anxious about their child’s health, concerned that he or she would miss out on the health benefits of breastfeeding that are extolled in mainstream health information for mothers.
Moreover, in order to avoid unwanted disclosure and stigmatisation, many women isolated themselves and stayed away from social interactions.
In order to face these challenges, Dr Tariq says that women required considerable resilience. The most important of the resources that they drew upon was the knowledge that they were safeguarding their baby.
“The most important thing is my child not having it [HIV], you understand? If there’s anything that’ll make them not have it, why wouldn’t I do it?”
Although many of the fathers were absent or semi-absent, when they were present and supportive, this was extremely important. Knowing other mothers who had given birth to HIV-negative babies was also valuable.
Women deployed creative excuses to explain why they weren’t breastfeeding, for example saying that they had mastitis or had recently taken antibiotics. When provided, free formula milk and feeding equipment were of considerable help.
Two further posters at the conference, both from Dr Mags Portman, Dr Durba Raha and colleagues at Leeds Teaching Hospitals, shed further light on infant feeding choices.
The first drew attention to the confusing nature of the health information that women may consult. Every month, approximately 2900 Google searches on HIV and breastfeeding are requested. Moreover, around 320 of them come from the UK.
The clinicians entered a series of phrases such as ‘HIV breastfeeding’, ‘HIV breastfeeding transmission’ and ‘I am HIV positive can I breastfeed’ into Google. Both the worldwide and UK versions of Google were used, and 19 of the most frequently occurring links were examined.
Seven of the 19 were news reports, eight were websites giving advice and four were links to policy documents.
Among the most commonly returned pages were a BBC news report titled ‘Breastfeeding alone cuts HIV risk’, a page from the HIV information charity AVERT and a page from UNICEF.
A major issue was that it was not always immediately clear – if at all – that a page was giving advice that was relevant to resource-limited settings and that recommendations would be different in resource-rich settings. This was the case with pages from internationally respected bodies such as the World Health Organisation, the Centers for Disease Prevention and Control and UNICEF.
In four of the 19 pages, the initial impression from the headline was straightforwardly supportive of breastfeeding.
While some of the pages were high quality and well referenced, three of the pages contained misleading information, such as Metro’s claim that “a mother’s breast milk can stop a baby contracting HIV”, based on this unhelpful university press release (the fourth most commonly returned page in December 2012).
The next poster outlined the experience of two women who, after extensive discussion with their healthcare team, decided to breastfeed. Both were on therapy, had an undetectable viral load and had already had children. The first had heard encouraging stories from friends in her country of origin who had breastfed – she said it made her feel like a ‘real mum’. The second mother felt that breastfeeding helped her bond with her child (something she felt she hadn’t been able to do with her first child, who was delivered via caesarean section and formula fed).
Both switched to formula feeding after five to six weeks due to the development of mastitis in the first case, and after viral load was found to be detectable (51 copies/ml) in the second case. Definitive HIV testing results for the two babies are still outstanding.
Finally, Portman outlined points that healthcare workers should discuss with women considering breastfeeding:
- There is no HIV transmission risk during bottle-feeding; during breastfeeding it may be between 1 and 3%.
- The content of the BHIVA and CHIVA position statement.
- Its specific recommendations that if women do breastfeed, there should be no mixed feeding and that breastfeeding should last for the shortest time possible.
- There may be HIV present in breast milk when it is undetectable in blood. More research is needed.
- Similarly, the long-term impact of taking antiretroviral therapy as a baby, including through breast milk, is unknown.
- A discussion of benefits and risks – short-term gains (less respiratory illness and diarrhoea; mother’s emotional wellbeing) compared with the long-term consequences of HIV infection.
- How the woman would feel if HIV transmission occurred.
- Consequences of HIV infection as a child, rather than as an adult – possibility of developing drug resistance early in life; poorer life expectancy; difficulties of dealing with HIV status during adolescence.
- Dealing with social pressure, stigma and unwanted disclosure if bottle-feeding.
- If the woman has any doubts about breastfeeding, health professionals’ default position should be that she does not breastfeed.
Tariq S et al. 'I just accept it, but in my heart it pains me because as a woman you have to breastfeed your baby.' The impact of infant feeding decisions on African women living with HIV in London. 19th British HIV Association conference, Manchester, abstract P63, April 2013.
Raha D et al. HIV and breastfeeding: Let me Google that for you... 19th British HIV Association conference, Manchester, abstract P72, April 2013.
Portman M et al. Two HIV-positive breastfeeding mothers in the UK - their story. 19th British HIV Association conference, Manchester, abstract P76, April 2013.