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.
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.
