Mismatch between US infant feeding policies and the lived experience of HIV-positive women

US guidelines recommending that HIV-positive women feed their infants formula milk instead of breast milk create unique challenges for patients and healthcare providers alike, according to a mixed-methods study recently published in the Journal of the International AIDS Society. This research was led by Dr Emily Tuthill at the University of California San Francisco and found that over three-quarters of healthcare providers had patients asking if they could breastfeed their infants, and nearly a third had cared for patients who decided to breastfeed despite the recommendations.

Patients expressed concerns over multiple forms of stigma, their babies missing out on the health benefits of breastfeeding and having to reveal their HIV status when probed about not breastfeeding. Providers were most concerned about patients’ adherence to treatment and maintaining an undetectable viral load.

Until recently, both the American Academy of Pediatrics and the US Department of Health and Human Services (DHHS) recommended that women with HIV should exclusively feed their infants formula milk due to the risk of transmission associated with breastfeeding. This recommendation is common in high-resource settings. A recent update to the DHHS' Perinatal Guidelines contains some guidance for providers who have patients wanting to breastfeed, including harm-reduction strategies. Nonetheless, the updated guidelines advise against breastfeeding and encourage exclusive formula feeding for HIV-positive mothers.

Glossary

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

perinatal

The period of time shortly before and after birth.

harm reduction

Harm reduction is a set of practical strategies and ideas aimed at reducing negative consequences associated with drug use (including safer use, managed use and abstinence). It is also a movement for social justice built on a belief in, and respect for, the rights of people who use drugs.

exclusive breastfeeding

Feeding an infant only breast milk, with no other liquids or solids, for the first six months of life.

disclosure

In HIV, refers to the act of telling another person that you have HIV. Many people find this term stigmatising as it suggests information which is normally kept secret. The terms ‘telling’ or ‘sharing’ are more neutral.

This is in contrast to the World Health Organization guidelines for resource-limited settings, which recommend exclusive breastfeeding for six months and continued breastfeeding up to 24 months if both the mother and infant are on antiretroviral treatment (ART). Studies from low-resource settings have shown that the chances of HIV transmission are low (0-3%) if ART is maintained before and during breastfeeding as well as a reduced risk of infant death from other causes.

Further conflict is created for mothers in high-resource settings when breastfeeding is heavily recommended for HIV-negative mothers by public health officials, due to the health benefits of early breastfeeding.

Study design and survey results

Ninety-three healthcare providers who care for women living with HIV in the US completed surveys and a subset of 21 participants were also interviewed, between September 2016 and April 2017. The semi-structured interviews explored providers’ approaches to counselling patients about infant feeding, their knowledge of and attitude towards national and international infant feeding guidelines, and concerns they or their patients had around HIV and infant feeding.

Survey respondents were predominantly white (66%), female (88%), working in academic settings (69%), with a median of 12 years of experience, and from varied regions of the US. Of the 21 providers who completed the interviews, professions included obstetrics-gynaecology physicians, nurses, social workers and general physicians.

Survey responses revealed that most providers (67%) informed their patients about the recommendations against breastfeeding but had open‐ended discussions about patients’ intentions. Only 16% of providers did not entertain the possibility of breastfeeding at all with no further discussion; the rest would offer breastfeeding as an option or were unsure. Some (22%) offered additional counselling and support when it came to exploring breastfeeding.

Over 75% of providers reported that a patient had asked if they could breastfeed and 29% had cared for a patient who chose to breastfeed despite the recommendations. Around half of those asking to breastfeed and who breastfed despite the recommendations were immigrants.

Providers reported that patients were mostly concerned about stigma arising from not breastfeeding (58%) and their infants not gaining the associated health benefits (51%), while providers were most concerned about ART non-adherence (70%) and the ongoing risk of transmission (66%). Over a third of providers discussed strategies to avoid disclosure of HIV by giving the appearance of breastfeeding.

Four main themes emerged from the interviews, providing more insight into the survey results. They are presented below.

US guidelines are inadequate

Interviews were carried out prior to the update of the US Perinatal Guidelines, and thus reflect the exclusive formula-feeding recommendation.

Many providers felt that the US guidelines were inadequate when it came to assisting HIV-positive women who wanted to breastfeed. While some attempted to adhere to the guidelines, others developed protocols to assist with dealing with patients’ requests to breastfeed. Many providers were aware of the studies and differing recommendations in low-resource settings and expressed frustration at these discrepancies. This was especially pertinent when dealing with immigrants from low-resource settings who had received different information regarding the safety of breastfeeding.

“I recently came back from Malawi, they kind of roll their eyes when I tell them this is even an issue in the U.S. because there, exclusive breastfeeding, it’s the norm and that’s the standard of care.” Obstetrician

Negotiating patient autonomy

Providers expressed differing approaches. While some were firm in terms of the formula-feeding recommendation, others felt that it was important to acknowledge and prioritise divergent patient decisions. Some providers also expressed concern regarding the psychological impact of not breastfeeding and discussed structural barriers that may play a role in preventing formula feeding (such as accessing benefits or knowledge regarding formula feeding). Psychological distress could arise from cultural norms regarding breastfeeding (especially for immigrants), concerns over mother-infant bonding and the health effects of not breastfeeding. For those prioritising patient autonomy, a more detailed discussion regarding feeding practices was often necessary.

“[Patients] are coming to these questions based on just the fact that they’re living for a long time, and they’re taking meds, and the meds are working, and so why wouldn’t breastfeeding be an option?” Nurse practitioner

“I did feel badly because if really the risks are extremely low and the person is suffering in some way mentally, psychologically by not [breastfeeding].” Physician

Harm reduction approaches

Most providers recognised the importance of minimising negative consequences for infants and mothers in instances where women had a strong desire to breastfeed. Various harm reduction approaches were discussed, including: co-ordinating care across providers and systems and ensuring a team approach was in place, dealing with resistance from any members of the care team (also in order to prevent referrals to child protection services), ensuring ongoing viral suppression, and maintaining open channels of communication.

“The main concern would be that a mother would choose to do this and not feel like she could talk to her provider about it, so then there’d be no way of actually helping to offer more support and monitoring in that situation.” Nurse practitioner

“I would want to keep her in our multidisciplinary perinatal clinic as long as she was breastfeeding. So she can continue to benefit from those resources and make sure that we’re doing all the things we did during pregnancy to keep her viral loads suppressed.” Obstetrician

Dealing with multiple forms of stigma

Providers spoke about the ongoing stigmatisation of women living with HIV who were either pregnant or new mothers. Multiple levels of stigma intersected to create challenging situations for patients. One possible source of stigma was the assumed association between formula feeding and HIV infection, especially in some immigrant communities. This may lead to probing questions and forced disclosure. Providers shared how they occasionally provided alternative narratives to patients to explain why they were not breastfeeding, such as the presence of less-stigmatised diseases, such as diabetes.

“If you’re American born, you have been cultured for the most part that breastfeeding is an option. And if you don’t choose it, you’re not choosing it for a bunch of reasons. Where my African born or Caribbean born women, if you don’t breastfeed it’s because you have HIV. Like one equals the other.” Unspecified provider

“HIV is stigmatizing, and you see everywhere, if you have any access to any form of media, that breast is best, breast is best. It’s like you hear it in your head, and then you have these women who are told, ‘Your body actually isn’t best.’ So, that’s even further stigmatizing.” Nurse

Conclusions

This is the first US study to shed light on healthcare provider perspectives on this issue and reveals important discrepancies between US breastfeeding policies for HIV-positive women and lived experiences. Despite the recent update to the Perinatal Guidelines, which make provisions for HIV-positive women who want to breastfeed, the primary recommendation remains to exclusively formula feed. This leaves healthcare providers in a challenging position and they are given little support to provide harm reduction measures for mothers and infants.

While some providers adhered strictly to the recommendations, others acknowledged the need to respect patients’ autonomy. Stigma, migration and cultural factors create unique challenges when it comes to choosing whether to breastfeed or not. Clinical guidelines need to acknowledge these multiple challenges in order to be relevant and to prevent a breakdown in the provider-patient relationship which could lead to detrimental outcomes.

References

Tuthill EL et al. “In the United States, we say, ‘No breastfeeding,’ but that is no longer realistic”: provider perspectives towards infant feeding among women living with HIV in the United States. Journal of the International AIDS Society 22: e25224, 2019. (Full text freely available).