Infant feeding knowledge among women living with HIV and their interaction with healthcare providers in a high-income setting: a longitudinal mixed methods study

Abstract

Background
Recent changes in the infant feeding guidelines for women living with HIV from high-income countries recommend a more supportive approach focusing on shared decision-making. Limited information is available on the infant feeding knowledge of women living with HIV and how healthcare providers engage with them in this context. This multicenter, longitudinal, mixed methods study aims to get a comprehensive and nuanced understanding of infant feeding knowledge among women living with HIV of Nordic and non-Nordic origin living in Nordic countries, and their interaction with healthcare providers regarding infant feeding planning.

Methods
Pregnant women living with HIV in Denmark, Finland, and Sweden were recruited in 2019–2020. The Positive Attitudes Concerning Infant Feeding (PACIFY) questionnaire was completed in the 3rd trimester (T1), three (T2), and six (T3) months postpartum. Women who completed the quantitative survey were also invited to participate in qualitative semi-structured interviews at T1 and T3. Results from the survey and interviews were brought together through merging to assess for concordance, complementarity, expansion, or discordance between the datasets and to draw meta-inferences.

Results
In total, 44 women living with HIV completed the survey, of whom 31 also participated in the interviews. The merged analyses identified two overarching domains: Knowledge about breastfeeding in the U = U era and Communications with healthcare providers. The women expressed confusion about breastfeeding in the context of undetectable equals untransmittable (U = U). Women of Nordic origin were more unsure about whether breastfeeding was possible in the context of U = U than women of non-Nordic origin. Increased postpartum monitoring with monthly testing of the mother was not seen as a barrier to breastfeeding, but concerns were found regarding infant testing and infant ART exposure. Infant feeding discussions with healthcare providers were welcome but could also question whether breastfeeding was feasible, and many participants highlighted a need for more information.

Conclusions
Healthcare providers caring for women living with HIV must have up-to-date knowledge of HIV transmission risks during breastfeeding and engage in shared decision-making to optimally support infant feeding choices.

Full text

Moseholmetal.
International Breastfeeding Journal (2024) 19:71
https://doi.org/10.1186/s13006-024-00677-2
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International Breastfeeding
Journal
Infant feeding knowledge amongwomen
living withHIV andtheir interaction
withhealthcare providers inahigh-income
setting: alongitudinal mixed methods study
Ellen Moseholm1,2*, Inka Aho3, Åsa Mellgren4,5, Isik S Johansen6, Terese L Katzenstein7, Gitte Pedersen8,
Merete Storgaard9 and Nina Weis1,10
Abstract
Background Recent changes in the infant feeding guidelines for women living with HIV from high-income coun-
tries recommend a more supportive approach focusing on shared decision-making. Limited information is available
on the infant feeding knowledge of women living with HIV and how healthcare providers engage with them in this
context. This multicenter, longitudinal, mixed methods study aims to get a comprehensive and nuanced understand-
ing of infant feeding knowledge among women living with HIV of Nordic and non-Nordic origin living in Nordic coun-
tries, and their interaction with healthcare providers regarding infant feeding planning.
Methods Pregnant women living with HIV in Denmark, Finland, and Sweden were recruited in 2019–2020. The Posi-
tive Attitudes Concerning Infant Feeding (PACIFY) questionnaire was completed in the 3rd trimester (T1), three (T2),
and six (T3) months postpartum. Women who completed the quantitative survey were also invited to participate
in qualitative semi-structured interviews at T1 and T3. Results from the survey and interviews were brought together
through merging to assess for concordance, complementarity, expansion, or discordance between the datasets
and to draw meta-inferences.
Results In total, 44 women living with HIV completed the survey, of whom 31 also participated in the interviews. The
merged analyses identified two overarching domains: Knowledge about breastfeeding in the U = U era and Communica-
tions with healthcare providers. The women expressed confusion about breastfeeding in the context of undetectable
equals untransmittable (U = U). Women of Nordic origin were more unsure about whether breastfeeding was possible
in the context of U = U than women of non-Nordic origin. Increased postpartum monitoring with monthly testing
of the mother was not seen as a barrier to breastfeeding, but concerns were found regarding infant testing and infant ART
exposure. Infant feeding discussions with healthcare providers were welcome but could also question whether breast-
feeding was feasible, and many participants highlighted a need for more information.
Conclusions Healthcare providers caring for women living with HIV must have up-to-date knowledge of HIV trans-
mission risks during breastfeeding and engage in shared decision-making to optimally support infant feeding choices.
Presentations: An oral presentation of the preliminary results was presented
at The AIDS Impact conference, June 12-14, 2023, Stockholm, Sweden.
*Correspondence:
Ellen Moseholm
ellen.froesig.moseholm.larsen@regionh.dk
Full list of author information is available at the end of the article
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Moseholmetal. International Breastfeeding Journal (2024) 19:71
Keywords Women living with HIV, Infant feeding, Breastfeeding, Longitudinal-mixed methods study, Nordic setting,
2BMOM
Background
e success of combination antiretroviral therapy (ART)
has reduced perinatal HIV transmission in many parts
of the world, including the Nordic countries, to less
than 1% [1–3]. Perinatal HIV transmission refers to the
transmission of HIV from mother to child during preg-
nancy, delivery, or postpartum via breastfeeding. e
estimated risk of HIV transmission through breastfeed-
ing without maternal ART is 15-30% over a two-year
period [4]. Results from the Promoting Maternal and
Infant Survival Everywhere (PROMISE) trial showed
that with successful maternal ART during pregnancy
and postpartum the transmission risk during breast-
feeding decreases to less than 1% [5, 6]. However, both
the PROMISE trial [5, 6] and other transmission stud-
ies [7, 8] were conducted in low- and middle-income
countries and most postnatal transmissions occurred in
women who initiated ART late in pregnancy or among
women with adherence challenges and/or detectable
viremia. ere is limited evidence on the transmission
risk through breastfeeding in women who have been
treated with ART throughout the whole pregnancy and
postpartum period.
In most high-income countries (including the Nordic
countries) where access to safe and accessible infant
feeding options are readily accessible, exclusive for-
mula feeding is recommended as the safest option for
women living with HIV (WLWH) [9–12]. Qualitative
studies have highlighted that some WLWH, especially
those originating from low- and middle-income set-
tings where breastfeeding is recommended irrespec-
tive of HIV status [13], may face personal, social, and
familial pressures to breastfeed [14–16]. Fear of others
finding out about HIV status has also been described
as a concern [17]. Moreover, following the results of
the PARTNER study, confirming that individuals with
an undetectable viral load do not transmit HIV sexually
[18], referred to as undetectable equals untransmittable
(U = U), there has been much debate in the literature on
whether this also applies to breastfeeding, particularly
for women on ART throughout thepregnancy and the
postpartum period [19–22].
Experts and patients have in the past decade called
for a shared decision-making approach, where WLWH
receive the information and support necessary to make
informed infant feeding decisions [22–25]. is has led
to recent updates in guidelines emphasizing that coun-
seling oninfant feeding is an integral component of care
for pregnant and postpartum WLWH and that WLWH
should be supported in their choice of infant feeding,
whether this is formula feeding or breastfeeding [11, 12].
Many factors influence infant feeding choices, includ-
ing social and cultural factors, personal values, desire for
infant bonding, and stigma [20, 26] and WLWH in high-
income countries are increasingly choosing to breastfeed
[26–28]. Healthcare providers (HCPs) play an impor-
tant role in supporting safe infant feeding choices in the
context of HIV. Recent studies from the US have docu-
mented that HCPs are being asked about breastfeeding in
the context of HIV and that providers often have limited
experience and knowledge when counseling WLWH on
infant feeding choices [29, 30]. However, studies have
also shown that many WLWH either do not receive coun-
seling or are unsatisfied with the infant feeding coun-
seling they do receive, and may not fully understand the
scenarios where breastfeeding could be supported (e.g.,
in the context of fully suppressed HIV viral load) [31, 32].
us, guidance from HCPs and knowledge about infant
feeding choices is an important component of care for
pregnant and postpartum WLWH and the shared deci-
sion making process [33]. However, as highlighted in a
recent meta-synthesis, there is a scarcity of research on
infant feeding knowledge and counseling among WLWH
living in high-income settings, especially in the context of
U = U [14].
Using a mixed methods research design this study
aimed to get a comprehensive and nuanced understand-
ing of infant feeding knowledge among WLWH living
in Nordic countries, their interaction with and support
by HCPs regarding infant feeding choices, and to assess
differences between WLWH of non-Nordic and Nordic
origin.
Methods
Design
is study used data from the “Becoming and Being
a Mother Living with HIV” (2BMOM) study, a multi-
center, longitudinal, convergent mixed methods study
among pregnant and postpartum WLWH in the Nor-
dic countries Denmark, Finland, and Sweden [34]. e
2BMOM study, which is described in detail elsewhere
[34], consisted of a survey study [35] and a qualitative
interview study [36] (Fig. 1). Using multiple methods
describing both general trends and detailed in-depth
data on infant feeding knowledge and experiences with
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HCPs can enhance understanding to guide support
regarding infant feeding choices among WLWH [37].
Setting
ere are approximately 5,400 WLWH living in Den-
mark, Finland, and Sweden [38–40]; the majority of
whom have immigrated mainly from sub-Saharan
Africa. e tax-based healthcare system in the Nor-
dic countries ensures universal access to both medi-
cal healthcare and many social support services [41].
us, ART is provided free of charge, and people living
with HIV are generally well-treated on ART with life
expectancies approaching those of the general popula-
tion [39, 40, 42]. Most pregnant WLWH in the Nordic
countries have an undetectable viral load at the time of
delivery resulting in a perinatal HIV transmission rate
of < 1% [1, 2, 43]. Guidelines in the participating coun-
tries do not recommend breastfeeding for WLWH [9,
44, 45]. However, if a woman with an undetectable viral
load decides to breastfeed, she should be supported in
this choice and there should be increased monitoring
of both mother and child throughout the breastfeeding
period [9, 44].
Quantitative survey
Participants
Pregnant WLWH were consecutively recruited by the
medical staff during routine clinical appointments
between January 2019 and December 2020 from the
participating sites: Departments of Infectious Diseases
at Copenhagen University Hospitals, Hvidovre, and Rig-
shospitalet; Odense -, Aalborg – and Aarhus University
Hospitals in Denmark, Helsinki University Hospital,
Finland, and Sahlgrenska University Hospital, Sweden.
Women were eligible for inclusion if they were ≥ 18 years
of age, living with HIV, pregnant with a viable infant
without life-threatening conditions or congenital anoma-
lies, and able to speak and read English, Danish, Swedish,
or Finnish.
Data collection
Quantitative data were collected using self-adminis-
tered questionnaires via REDCap© in the 3rd trimes-
ter (T1), three and six months postpartum (T2 and T3,
respectively). At each time point, a survey link was sent
to the participants, who then completed the survey on
their own time. Infant feeding knowledge was assessed
using the Positive Attitudes Concerning Infant Feeding
Fig. 1 Study diagram
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Moseholmetal. International Breastfeeding Journal (2024) 19:71
(PACIFY) questionnaire, which contains 20 items assess-
ing knowledge and different views and issues surround-
ing breastfeeding in WLWH [31]. e questionnaire was
translated into Danish, Finnish, and Swedish using the
forward-backward method [46]. Demographic variables
were collected at baseline (T1). Information on clinical
variables were obtained from the medical records.
Analysis
For comparison, descriptive data were stratified by migra-
tion status defined as non-Nordic origin (born outside
a Nordic country) and Nordic origin (born in a Nordic
country). Categorical variables were described as counts
and calculated percentages, and continuous variables
were described as means (95% confidence intervals (CI)).
Analyses were performed using STATA 17 software.
Qualitative interviews
Participants
Eligible participants included pregnant WLWH who had
completed the survey at T1 and who could speak Dan-
ish or English. us, a nested sample of WLWH were
recruited for both the survey and the interviews at the
time of recruitment into the study. Participants were con-
secutively sampled until reaching data saturation (i.e. the
point when no substantially new information emerged
from the interviews) [47, 48].
Data collection
Qualitative data were collected via individual interviews
conducted by the first author (EM) in the third trimes-
ter (T1) and six months postpartum (T3). All interviews
used a hybrid, narrative/semi-structured format [49].
is approach was chosen to ensure that the same con-
cepts were explored in both the quantitative and qualita-
tive phases of the 2BMOM study, while still allowing for
new insights and perspectives to emerge [34]. e inter-
views were conducted in Danish or English in the home
of the participant, at the relevant hospital, or online using
a video meeting setup, based on the women’s preference.
e interviews lasted between 20 and 90 min (mean
51min), were audio-recorded, and transcribed verbatim.
Analysis
e transcribed interviews were analyzed inductively
using narrative thematic analysis as described by Riess-
man [50]. e analysis consisted of several consecutive
steps: (1) Initial coding focusing on capturing the main
ideas from the women´s stories. (2) Emergent themes and
patterns across a subset of transcripts were identified and
discussed among the team members (EM, NW) while
paying close attention to the whole story and the study
aims. (3) e themes were then compared for similarities
and differences across participants and their narratives,
focusing on women of non-Nordic and Nordic origin,
respectively. (4) e themes were brought together to
create and define the primary narrative themes [50].
(5) Consistency across the themes was discussed and a
codebook was developed to document and organize the
codes. In the final step, the codebook was used to code
and analyze all the interview data using NVivo software,
©QSR International Pty Ltd.
Mixed methods integration andanalysis
Integration in mixed methods research is defined as an
intentional process by which the researcher brings qual-
itative and quantitative data together in one study [47].
e quantitative survey data and qualitative interview
data in this study were brought together through merging
using identified commonalities across the two datasets
as the overarching domains [51]. Specifically, the results
from the two datasets were merged in a joint display anal-
ysis using a side-by-side comparison to assess for com-
plementarity, expansion, concordance, or discordance
between the datasets and to draw meta-inferences (i.e.,
interpretations made based on both the qualitative and
quantitative findings) [51–53] for WLWH of non-Nor-
dic and Nordic origin. Complementarity occurred when
the two datasets illustrated different but nonconflicting
interpretations. Expansion occurred when the findings
from the two datasets diverged and expanded insights by
addressing different aspects of infant feeding knowledge
and perceptions. Concordance occurred if the findings
from both types of data led to the same interpretation,
while discordance occurred if the survey and interview
results were contradictory or disagreed with each other
[52]. e results are presented in joint displays where the
quantitative and qualitative results are visualized side-by-
side in a table together with the meta-inferences [51, 53].
Results
Participant characteristics
Overall, 71 pregnant WLWH fulfilled the inclusion crite-
ria during the study period of whom 57 agreed to partici-
pate in the quantitative survey and 47 pregnant women
completed the baseline survey (T1). e main reasons for
non-participation were language barriers and psychiatric
or social complications. e PACIFY questionnaire was
completed by 44 women at T1 and were thus included
in this analysis (response rate 62%). A total of 36 and 38
women (82% and 86%) completed the survey at follow-
up T2 and T3, respectively (Fig.1). In total, 31 pregnant
WLWH agreed to participate in the qualitative interviews
including 24 from Denmark, five from Finland, and two
from Sweden. Baseline characteristics are presented in
Table1. All participating women identified as cisgender.
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Moseholmetal. International Breastfeeding Journal (2024) 19:71
Twelve women were born in a Nordic country, while 32
were born outside of the Nordic countries; 24 of whom
were of African origin, while eight originated from South
America, Southern or Eastern Europe, or the Middle
East. All women were on ART at the time of delivery.
Mixed methods analysis
e merged analyses identified two overarching domains:
Knowledge about breastfeeding in the U = U era and
Communications with healthcare providers.
Knowledge aboutbreastfeeding intheU = U era
e results on knowledge about breastfeeding in the
U = U era are presented in Table2. In the survey, 75% of
participants responded that it was not safe to breastfeed
with a detectable HIV viral load, irrespective of maternal
origin and with little change over time (non-Nordic ori-
gin n = 24/32 and Nordic origin n = 9/12 at T1). Half of
the women of non-Nordic origin responded at T1 either
that it was safe to breastfeed with an undetectable HIV
viral load (n = 7/32) or that they did not know (n = 8/32).
Half of the women of Nordic origin responded at T1 that
it was safe to breastfeed with an undetectable HIV viral
load (n = 6/12), while one-third responded that they did
not know (n = 4/12). At T2 and T3, 75% (n = 9/12) and
60% (n = 6/10) of the WLWH of Nordic origin responded
that they did not know whether it was safe to breastfeed
with an undetectable viral load.
e qualitative results complemented these findings
showing that many of the women were confused about
breastfeeding in a U = U context. Several of the women
questioned why there was a risk of HIV transmission
through breastfeeding when they could not transmit
HIV through sex if they had an undetectable viral load.
e women also noted that they could have a vaginal
delivery, even though the risk of HIV transmission could
not be completely ruled out, and wondered why this
was not also the case with breastfeeding. Women who
Table 1 Baseline characteristics of women living with HIV included in the study
* At baseline (T1). All participants had an HIV RNA viral load < 50 at the time of delivery.
Quantitative Survey Qualitative Interviews
(n = 44) (n = 31)
Age, mean (95% CI) 33.91 (32.4 : 35.5) 33.9 (29.5 : 36.6)
Relationship status, n (%)
Married/living with a partner 35 (80) 25 (80)
Have a partner, but not living together 4 (9) 3 (10)
Do not have a current partner 5 (11) 3 (10)
Country of birth, n (%)
Nordic country (Denmark, Finland or Sweden) 12 (27) 9 (29)
Africa 24 (55) 19 (61)
Other 8 (18) 3 (10)
Education, n (%)
Primary/Secondary school 14 (32) 11 (35)
Higher education (college/university) 27 (61) 20 (65)
Unknown 3 (7) 0
Nulliparous, n (%) 15 (34) 14 (45)
Years since HIV diagnosis, mean (95% CI) 9.32 (7.0 ; 11.6) 9.55 (6.4 ; 12.7)
HIV diagnosis in pregnancy, n (%)
Yes 3 (7) 3 (10)
Mode of HIV transmission, n (%)
Sexual 39 (89) 27 (87)
Perinatal 5 (11) 4 (13)
HIV viral load*, n (%)
< 50 copies/mL 36 (82) 24 (77)
>=50 copies/ml 8 (18) 7 (23)
Mode of delivery, n (%)
Vaginal 31 (70) 22 (71)
Caesarean 13 (30) 9 (29)
Gestational age < 37 weeks, n (%) 4 (9) < 3 (6)
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Table 2 Knowledge about breastfeeding in the U=U era among women living with HIV of non-Nordic and Nordic origin depicted in a
joint display of quantitative, qualitative, and mixed methods findings
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immigrated, especially women of African origin, found it
confusing that the guidelines in their home country rec-
ommended breastfeeding in WLWH, while in the Nordic
countries, breastfeeding was not recommended.
All of the women of Nordic origin (n = 12/12) and
most of the women of non-Nordic origin (n = 27/32)
would be willing to have monthly blood tests to check
viral load if they were to breastfeed. However, partici-
pants were less likely to have additional blood tests
taken on their child (non-Nordic origin n = 24/32
and Nordic origin n = 7/12). e qualitative findings
revealed that women saw additional tests as a practi-
cal way to make breastfeeding with HIVsafer, provid-
ing reassurance for some. However, the women were
also concerned about the number of appointments this
would require and putting their child through addi-
tional blood tests. One mother decided to breastfeed
but was unprepared for the additional monthly tests
her child required, leading her to stop breastfeeding
after two months. 47% (n = 15/32) of women of non-
Nordic origin and 33% (n = 4/12) of women of Nordic
origin responded that they had concerns about breast-
feeding while on ART, while one-third in both groups
responded that they did not know. e qualitative find-
ings highlighted that exposure to antiretroviral (ARV)
drugs through breastfeeding was something the women
considered when balancing between the risks and ben-
efits of breastfeeding. A few women stated that this was
not something they had thought about, because breast-
feeding was not an option when living with HIV.
Communications withhealthcare providers
e results on communications with HCPs are presented
in Table3. A majority of the women in both groups had
discussed breastfeeding with their HCPs; 84% (n = 27/32)
at T1, 88% (21/24) at T2 and 89% (n = 25/28) at T3
among women of non-Nordic origin and 83% (n = 10/12)
at T1, 75% (n = 9/12) at T2, and 80% (n = 8/10) at T3
among women of Nordic origin. e qualitative find-
ings expanded this showing that discussions with HCPs
ranged from hardline recommendation of breastfeeding
avoidance to more open-ended questions about infant
feeding/breastfeeding. ese open-ended questions and
discussions were welcome but could also add to the con-
fusion about whether breastfeeding was possible. Some
women brought up the subject of infant feeding them-
selves, seeking information, especially with what to say if
asked about breastfeeding by others.
e women had mainly discussed breastfeeding with
their HIV doctor and their midwife; 89% (n = 24/27) and
78% (n = 21/20) of women of non-Nordic origin and 90%
(n = 9/10) and 70% (n = 7/10) of women of Nordic ori-
gin, respectively. However, the quantitative results also
highlight that the women discussed breastfeeding with
a wide range of HCPs across the pregnancy-postpartum
trajectory. ese discussions were often initiated by the
HCPs. e qualitative results complimented these find-
ings showing that these discussions were experienced as
reassuring by many of the women, helping them reflect
and deal with the emotional strain related to their choice
of not breastfeeding. However, the qualitative findings
also revealed that the women often felt healthcare pro-
viders lacked up-to-date knowledge about HIV, particu-
larly in the context of infant feeding, leading them to feel
they had to educate the providers.
Half of the women of non-Nordic origin (n = 16/32)
and 66% (n = 8/12) of the women of Nordic origin would
like more information on the risks and benefits of breast-
feeding for WLWH in pregnancy. e need for informa-
tion was less in the postpartum period, especially among
the women of non-Nordic origin. e qualitative data
expanded on these findings highlighting that the women
were interested in knowing whether breastfeeding was
possible, whether it was safe to breastfeed while living
with HIV, and knowledge about what research was being
done in the area.
Discussion
The findings from this mixed methods study on infant
feeding knowledge among WLWH in Nordic countries
and their interaction with HCPs found that there was
confusion about breastfeeding in the context of U = U,
that the women did discuss infant feeding with HCPs
across the pregnancy and postpartum trajectory, and
that these discussions were welcome, but could also
add to the confusion about whether breastfeeding was
feasible.
Several of the previous studies exploring infant feeding
knowledge have been conducted prior to the introduc-
tion of U = U with a focus on WLWH who have migrated
to either the UK or the USA [16, 54, 55]. More recent
qualitative studies conducted among WLWH in Canada
and the USA [56, 57] support our finding that the recom-
mendation of breastfeeding avoidance in a U = U context
is difficult to understand for many WLWH. Our finding
about confusion related to the difference in infant feeding
guidelines, especially among women who have migrated
from low- and middle-income countries where breast-
feeding is recommended irrespective of HIV status, have
been reported in previous studies [16, 54, 57]. How-
ever, the quantitative findings from our study show that
women of Nordic origin seem to be more unsure about
the safety of breastfeeding with an undetectable viral load
compared to women of non-Nordic origin. In the PAC-
IFY study, one-third of 94 WLWH in the UK responded
that they did not know if it was safe to breastfeed with
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Moseholmetal. International Breastfeeding Journal (2024) 19:71
an undetectable viral load [31]. Knowledge regarding
HIV transmission has been shown to provide confidence
in infant feeding choices in WLWH while varying advice
from HCPs and difference in guidelines can create ambi-
guity and insecurity about HIV transmission risks [58].
Although women in both groups would like more infor-
mation about the risks and benefits of breastfeeding
when living with HIV, especially during pregnancy, the
need for more information was highest among women of
Nordic origin.
Table 3 Communications with healthcare providers among women living with HIV of non-Nordic and Nordic origin depicted in a
joint display of quantitative, qualitative, and mixed methods findings
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International guidelines for pregnant and postpartum
women with HIV recommend increased monitoring of
both mother and child throughout the breastfeeding
period [11, 12]. Almost all WLWH in our study would
agree to have additional blood tests drawn for them-
selves in case of breastfeeding. However, approximately
a quarter of WLWH of non-Nordic origin and one-third
of WLWH of Nordic origin did not want or were unsure
about additional testing of their child. Infant HIV testing
has been described as emotionally difficult and associ-
ated with feelings of guilt and sadness by other studies
[15–17, 54]. Our results highlight that preparing WLWH
who choose to breastfeed about the additional testing of
the child is important, as this may influence their infant
feeding choice. Another important aspect is infant ARV
exposure through breast milk. ARVs are passed through
breast milk, although the clinical relevance of ARV con-
centrations in breast milk is not fully understood [59].
Serious adverse events in infants, due to maternal ART,
appear to be uncommon [20]. However, our results show
that ARV exposure through breast milk is relevant to
WLWH when considering their infant feeding choices.
e majority of WLWH had discussed infant feeding
with their HCP, a finding that is supported by the PAC-
IFY study [31]. What this study adds is knowledge about
the quality and debts of these conversations.
Our findings highlight that the women want to engage
in discussions about infant feeding. is is supported by
a recent US study [15]. Our results also highlight that the
discussions about infant feeding may add to the confusion
about whether breastfeeding is possible in a U = U con-
text. Several women experienced that the discussions with
HCPs were limited to a recommendation of breastfeeding
avoidance. Rather than focusing on breastfeeding or not,
WLWH emphasizes a more comprehensive perspective of
choice in relation to infant feeding [17, 57]. Infant feeding
discussions among women who chose not to breastfeed
were experienced as supportive and reassuring, espe-
cially with concerns about bonding. Moreover, receiving
help with developing strategies on what to say when asked
about breastfeeding was also important for many partici-
pants, a finding supported by others [29, 56].
Clinical implications
Implementing a shared decision-making approach to
support infant feeding choices can help WLWH to
understand the risk of transmission with breastfeeding
and why U = U does not, with the current knowledge,
apply to breastfeeding, and also accept global differ-
ences in guidelines [57, 60]. is requires that the risks
and benefits of breastfeeding in the context of HIV are
discussed, in addition to frequent follow-up visits for
both the mother and infant if the mother decides to
breastfeed [60].
Advising in the context of many unanswered questions
and distinct lack of evidence may be challenging for many
HCPs [30, 61]. Findings from a recent US study show that
HCPs struggle with the tension between responding to
patients´ choices, while simultaneously protecting infants
from risk of infection and following official guideline rec-
ommendations [30]. Examples of how to discuss infant
feeding with WLWH have been published [61, 62]. What
these have in common is that counseling should be ongo-
ing throughout the pregnancy and postpartum period,
that HCPs should be honest about the lack of evidence,
and informing the women that the best way to eliminate
risk is to abstain from breastfeeding [61, 62].
Infant feeding is a social, cultural, and emotional issue
that is best understood in relationship to the women’s
cultural and social background, and as WLWH [15, 17].
us, it is important that HCPs actively listen and answer
questions without judgment [56] and takes into account
how culture and HIV-related stigma intersect with infant
feeding knowledge and experiences when engaging in
shared decision-making [17]. Initiating an open and hon-
est conversation about infant feeding options based on
current evidence and guidelines is crucial and resources
from national HIV organizations and local NGO´s are
available to support HCP during this process [63–66].
Strengths andlimitations
To our knowledge, this is the first study focusing spe-
cifically on infant feeding knowledge and experiences in
WLWH living in Nordic countries. Using multiple meth-
ods provided a more comprehensive and nuanced under-
standing of infant feeding knowledge and experience
with HCP. e small sample size and the risk of selec-
tion bias is a limitation, reducing generalizability. e
number of pregnant WLWH in the Nordic countries are
small (< 70/year at the participating sites) and although
> 60% of eligible women were included, this study does
not reflect the perspective of WLWH who do not speak a
native Nordic language or English.
e term “breastfeeding” was used in the survey.
Although we acknowledge that there are multiple terms,
including chestfeeding used to describe this process,
the results cannot necessarily be extrapolated to apply
to chestfeeding. Moreover, we used a hybrid, narrative/
semi-structured format in the interviews to ensure that
overarching themes were explored in both the quantita-
tive and qualitative strands. Although in conformity with
the aim of the overall study, this approach may have lim-
ited the elaboration of the women´s experiences. Finally,
the study was completed during the COVID-19 pan-
demic, which could have had an impact on the results.
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Page 10 of 12
Moseholmetal. International Breastfeeding Journal (2024) 19:71
e participants may have had less contact with HCPs
and other support systems during this time, potentially
impacting the amount of information they received about
infant feeding.
Conclusion
is mixed methods study among WLWH with different
backgrounds living in a high-income setting highlights
that WLWH are confused about breastfeeding choices
and transmission risk. Women of Nordic origin were
more unsure about whether breastfeeding was possi-
ble in the context of U = U than women of non-Nordic
origin. e study also found that increased postpartum
monitoring with monthly testing of the mother was not
seen as a barrier to breastfeeding, but concerns were
found regarding infant testing and infant ART exposure.
Infant feeding discussions with HCPs across the preg-
nancy and postpartum trajectory were welcome, irre-
spective of origin. us, HCPs caring for WLWH must
have updated knowledge about HIV transmission risk
during breastfeeding and initiate a shared decision-mak-
ing process to provide optimal support for infant feeding
choices in WLWH.
Abbreviations
ART Antiretroviral Therapy
ARV Antiretroviral
HCP Healthcare providers
PACIFY Positive Attitudes Concerning Infant Feeding
The 2BMOM study The Becoming and Being a Mother living with HIV study
WLWH Women Living with HIV
U = U Undetectable equals untransmittable
Acknowledgements
We thank all the participating women in the 2BMOM study for taking the time
to complete the survey and participate in semi-structured interviews. We also
thank the doctors, nurses, and midwives at the participating sites in Denmark,
Finland, and Sweden for their invaluable help with the enrollment of par-
ticipants. Finally, we are very grateful to Hermione Lyall and Farai Nyatsanza
for letting us use the PACIFY survey to address infant feeding attitudes. The
2BMOM study has been supported with an educational grant via the Gilead
Nordic Fellowship Program.
Authors’ contributions
EM and NW had the original concept for the study. All authors contributed to
study design, data interpretation, writing the report, and approved the final
version. EM, IA, ÅM, ISJ, TLK, GP, MS and NW contributed to the data collection.
EM had full access to the data and completed the analysis together with NW.
Funding
Open access funding provided by Copenhagen University The 2BMOM
study was funded by The Novo Nordisk Foundation (Grant Number:
NNF17OC0029508 and NNF18OC0052512), Gilead Sciences (Grant Number:
220002078), and a research grant from Copenhagen University Hospital,
Hvidovre (2021). The funders had no role in study design, data collection,
data analysis, data interpretation, or writing of the report. The corresponding
author had full access to all the data in the study and had final responsibility
for the decision to submit for publication.
Availability of data and materials
The data that support the findings of this study are available from the cor-
responding author, but restrictions apply to the availability of these data,
which were used under license for the current study, and so are not publicly
available. Data are however available from the authors upon reasonable
request and with permission of relevant regulatory agencies.
Declarations
Ethics approval and consent to participate
The 2BMOM study was approved by the Danish Data Protection Agency (VD-
2018-253), the Finnish Ethics Committee (HUS/1330/2019), and the Swedish
Ethics Committee (Dnr: 2019–04451). Approval from the Danish National
Ethics Committee was not required as no biomedical intervention was per-
formed. All women gave informed consent to participate. The participants did
not receive any reimbursements.
Competing interests
EM reports grants from Gilead and the Novo Nordisk Foundation; honorarium
paid to her institution from GSK, Gilead and Merck Sharp Dohme, outside
the submitted work. IA reports personal fees from Merck Sharp Dohme,
Gilead, and Glaxo Smith Kline, and a grant from Gilead, outside the submit-
ted work. ÅM reports personal fees from Gilead and ViiV/ GSK, outside the
submitted work. TLK reports personal fees and grants from ViiV/Glaxo Smith
Kline, Gilead, CLS Behring, and Baxalta, outside of the submitted work. NW
reports honorarium paid to her institution from Merck Sharp Dohme, outside
the submitted work. The remaining authors (GP, ISJ, DB, and MS) declare no
competing interests.
Author details
1 Department of Infectious Diseases, Copenhagen University Hospital,
Kettegaard Alle 30, Hvidovre, Denmark. 2 Department of Public Health, Faculty
of Health and Medical Sciences, University of Copenhagen, Copenhagen,
Denmark. 3 Department of Infectious Diseases, Helsinki University Hospital,
Helsinki, Finland. 4 Department of Infectious Diseases, Region Västra Götaland,
Sahlgrenska University Hospital, Gothenburg, Sweden. 5 Department of Infec-
tious Diseases, Institute of Biomedicine, Sahlgrenska Academy, University
of Gothenburg, Gothenburg, Sweden. 6 Department of Infectious Diseases,
Odense University Hospital, Odense, Denmark. 7 Department of Infectious
Diseases, Copenhagen University Hospital, Rigshospitalet, Copenhagen Ø,
Denmark. 8 Department of Infectious Diseases, Aalborg University Hospital,
Aalborg, Denmark. 9 Department of Infectious Diseases, Aarhus University Hos-
pital, Aarhus, Denmark. 10 Department of Clinical Medicine, Faculty of Health
and Medical Sciences, University of Copenhagen, Copenhagen, Denmark.
Received: 30 October 2023 Accepted: 25 September 2024
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