“I love my baby more than they do”: Infant Feeding Decision-Making Among Mothers Living with HIV in the United States

Abstract

In the US and other high-income countries, national guidelines traditionally recommended against breastfeeding infants born to women living with HIV (WLHIV), due to the risk of HIV transmission to the infant. In 2023, US guidelines were changed to recommend collaborative decision-making and support for WLHIV who choose to breastfeed. Little is known regarding how WLHIV make the decision of how to feed their babies, leaving clinicians lacking guidance on how to provide effective counseling. We therefore conducted a semi-structured interview study of pregnant and recently postpartum WLHIV in the US. A diverse cohort of 19 WLHIV described weighing multiple considerations against one another based on their preferences and beliefs, with risk of HIV transmission being just one of many interconnected and often conflicting motivations. While some considerations were always associated with a specific feeding choice, others, such as fear of HIV disclosure, influenced some mothers to breastfeed and others to formula feed. In the context of both breastfeeding and formula-feeding, mothers were faced with a continuum of additional feeding-related choices throughout the child’s infancy. WLHIV stressed the importance of receiving personalized infant feeding counseling that acknowledges that their priorities and beliefs may be different from those of their health providers.

Introduction

In January 2023, the US Department of Health and Human Services (DHHS) revised their infant feeding guidelines for perinatally HIV exposed infants. For the first time they encouraged collaborative decision-making for infant feeding options within the context of maternal HIV [1]. This was a dramatic change from prior guidelines, which advocated against breastfeeding due to the risk of HIV transmission to the infant through breastmilk. This risk of transmission, however, can be made extremely low (<1%) when the mother maintains an undetectable viral load through the use of suppressive ART, or with infant antiretroviral mono-prophylaxis even when the mother’s viral load remains detectable [2–6]. This change, prompted in large part by the advocacy efforts of women living with HIV (WLHIV), brought US guidelines closer in line with those of the World Health Organization (WHO), which has long advocated for exclusive breastfeeding in the first six months of life, regardless of the HIV status of the mother [7–9].

It is well documented that breastfeeding confers numerous benefits to the infant, including a decreased risk of infectious diseases such as pneumonia and gastrointestinal illnesses, a decreased likelihood of obesity later in life, and better school performance [10–12]. Breastfeeding confers substantial benefits to the mother as well, such as decreased stress and depression, lower incidence of type II diabetes, reduced risk of breast and ovarian cancer, and decreased risk of coronary disease [13–15]. Aside from the medical benefits of breastfeeding, WLHIV are also faced with social and structural considerations regarding infant feeding. For example, replacement feeding has the potential to signal the HIV status of the mother, and community norms may impose a strong feeding preference on parents [16]. Infant feeding choices can also be impacted by employment settings and parental perceptions of what it means to be a ”good” mother [16,17]. Prior US infant feeding guidelines were built on the premise that any risk of mother-to-child transmission of HIV was unacceptable, discounting these other important factors.

Taking into consideration the values of WLHIV, clinicians are realizing they have a responsibility to reconsider how to best counsel and support their patients as they think about infant feeding options [18–20]. While a handful of studies have described the breastfeeding experiences of WLHIV in high-income countries, no prior studies have examined the infant feeding decision-making process of WLHIV within the context of a high income country [21–23]. To counsel parents effectively, providers need both clear understanding of health-related considerations and knowledge regarding how parents consider this information in their decision-making processes. To address this gap in knowledge, we conducted a semi-structured qualitative interview study of pregnant and postpartum WLHIV in the US regarding their infant feeding decision-making process.

Methods

Study Population

The source population was individuals living with HIV who had lived experience in deciding whether or not to breastfeed their infants. Specifically, eligible individuals were WLHIV who were pregnant or had given birth within the past three years in the US, and who were diagnosed with HIV prior to delivery without in utero transmission to the infant. Participation was open to people speaking any of the 160+ languages supported by our institution’s language services program. Initial eligibility criteria specified that participants must have “considered breastfeeding their infant” in order for us to capture the considerations that went into this decision, regardless of the ultimate feeding choices that were made. This criterion was removed partway through the project, after the study team became aware that participants found that screening question confusing and because one eligible woman who chose to breastfeed was inadvertently deemed ineligible because she selected “no” to this question in screening. We anticipated enrolling 15–25 individuals in this study, with the final enrollment number determined by thematic saturation, which refers to the point at which no new themes were expected to arise during interviews. [24] Potential participants were identified through purposive sampling of individuals known to investigators, professional networks, self-identification through a national infant feeding email listserv, and referrals from enrolled participants. Recruitment materials included a link to an online screening form in REDcap that potential participants could complete by answering a series of questions related to eligibility.[25,26] Upon completion of the form, participants provided their phone and/or email address and were then contacted by a member of the study team to complete the screening process. All participants provided informed consent prior to engaging in any study activities. Participants who completed a study interview were compensated for their time with a $50 electronic gift card.

All materials were reviewed and approved by the University of Pennsylvania (UPenn) Institutional Review Board (IRB) (FWA00004028), with the Children’s Hospital of Philadelphia IRB (FWA00000459) operating under a reliance agreement.

Data Collection

A semi-structured interview guide was developed using an adapted version of the Health Equity Implementation Framework (Figure 1) [27]. The interview guide consisted of open-ended questions and probes about the infant feeding decision-making process and experiences in the healthcare system around infant feeding. The UPenn Center for AIDS Research Community Advisory Board provided feedback on the interview guide, which was iteratively revised throughout data collection. The final full interview guide, with a log of changes made from the original, can be found in Online Resource 1.

Figure 1:

The Health Equity Implementation Framework, adapted to our study question. The interview guide and analysis focused on the highlighted categories: societal influence, context, and patient factors, and ways in which they interacted to influence the clinical encounter. Because we did not interview other recipients or providers, these categories within the framework are not a focus of this analysis.

Semi-structured interviews were conducted by interviewers trained in qualitative research (KN, CM, and NB), one of whom self-identified as a white, cis-gender mother, and two of whom identified as Black, cis-gender women. Interviews were conducted under the supervision of clinician-scientists experienced in qualitative research (RC and EL). All interviews were recorded and auto transcribed via Zoom^™. Transcripts were reviewed and edited by the interviewer for accuracy. After each interview, participants completed a demographic questionnaire.

Upon completion of each interview, the interviewer drafted a memo that included details that would not be apparent in transcripts (e.g., strong participant emotion), interviewer observations, and an assessment of thematic saturation. Thematic saturation discussions were held during team meetings, and group consensus regarding saturation was required to conclude recruitment.

Analysis

Data analysis was performed using a directed content analysis approach [28]. An initial codebook was developed based on the conceptual framework and preliminary review of the first two transcripts. Codes, subcodes, definitions, and coding inclusion/exclusion criteria were defined with the full study team. The codebook was iteratively revised throughout data collection and analysis using an inductive process as new themes arose. Revisions to the codebook required team consensus. All transcripts were coded by KN using NVivo version 13 (Lumivero, Denver, CO, USA), and a selection of six (32%) transcripts that were deemed to be particularly information-rich were dual-coded by KB. Coder disagreement that could not be resolved between the two coders was brought to the full team for discussion and resolution. Cohen’s kappa coefficient and percent agreement were used to assess inter-coder reliability. Coded data were then organized into themes, and discussions with the study team were used to further clarify themes and identify patterns in the data.

Results

A total of 19 participants were enrolled in the study. All participants identified as female and had a median age of 31 (inter-quartile range: 27, 33) years. Fifteen (79%) participants were born in the US, and all spoke English. Most participants lived in an urban area (13, 68%) with the population representing 11 different US states (CA, FL, IL, MI, MD, MN, NC, OH, PA, SD, TN). Thirteen (68%) breastfed or planned to breastfeed, and six (32%) exclusively used or planned to use formula. Two of the mothers who breastfed did so prior to the change in US guidelines. One mother who breastfed chose to exclusively pump and pasteurize her milk to eliminate the risk of HIV transmission. Three mothers who breastfed also supplemented with donor milk. Interestingly, two mothers were diagnosed with HIV during pregnancy, and both chose to breastfeed. Additional characteristics of the study population are presented in Table 1. An additional four individuals were potentially eligible but not enrolled: one refused participation due to the interview time commitment, and three were not able to be reached by a member of the study team to confirm eligibility. There were 12 individuals who completed the screening form but were deemed ineligible due to the following reasons: did not experience pregnancy/birth in the US (6), gave birth more than three years prior (2), didn’t consider breastfeeding (1), not diagnosed with HIV (1), not diagnosed with HIV prior to birth (1), and never pregnant (1). The study team conducted an additional nine interviews that were ultimately excluded from analysis due to concerns that the participants misrepresented their eligibility. After a surprising influx of screening form submissions over a short period of time, interviewers noted unusual similarities in phrasing and experiences across interviews. Upon examination of participant IP addresses, which were automatically collected as part of the eConsent process, it was noted that these participants were either located outside of the US or used a VPN which masked their location. Enrollment was paused while the study team sought feedback from the IRB, other researchers, and individuals with lived experience, and the study screening and enrollment process was revised. Participants who were suspected of misrepresenting their eligibility were contacted and asked to re-confirm eligibility; all refused to be re-screened and were therefore excluded from analysis. A full description of the identification of the suspected misrepresentation and actions taken in response has been published elsewhere.[29] Although we did not exclude any potential participants based on gender identity, our study population was exclusively cis-gender female. Therefore, discussion of our results will use gendered phrasing such as “mother” and “woman.”

Table 1.

Demographic characteristics of participants. Individual race categories sum to over 100% because participants were able to select all that apply.

	Median	IQR	Range
Age	31	27–33	24–41
Number of Children	2	1–3	0–7
Feeding Intention		N	%
Breastmilk		13	68.4%
Formula		6	31.6%
Currently Pregnant
Yes		3	15.8%
No		16	84.2%
Timing of HIV Diagnosis
Perinatally Acquired		5	26.3%
During Most Recent Pregnancy		2	10.5%
Other		12	63.2%
At least one pregnancy after guideline change
Yes		16	84.2%
No
Race
Black/African American		14	73.7%
White		3	15.8%
Asian		1	5.3%
Other		4	21.1%
Ethnicity
Hispanic/Latino		2	10.5%
Not Hispanic/Latino		16	84.2%
Unknown		1	5.3%
Participant birth country
United States		15	78.9%
Outside of US		4	21.1%
Parental birth country
Both born in US		12	63.2%
One born in US, one born outside of US		2	10.5%
Both born outside of US		5	26.3%
Participant breastfed as a baby
Yes		10	52.6%
No		7	36.8%
Unknown		2	10.5%
Locale Type
Urban		13	68.4%
Suburban		5	26.3%
Rural		1	5.3%
Education
Some high school		1	5.3%
High school or equivalent		5	26.3%
Some college, no degree		4	21.1%
Associate’s degree		4	21.1%
Bachelor’s degree		4	21.1%
Master’s degree		1	5.3%
Marital Status
Married		6	31.6%
Not married, living with partner		7	36.8%
Not married, not living with partner		1	5.3%
Single		5	26.3%
Insurance Type
Private		7	36.8%
Public		10	52.6%
Both public and private		1	5.3%
None		1	5.3%

The weighted mean kappa coefficient for the dual-coded transcripts was 0.95 (range: 0.80–1), and the weighted mean agreement between coders was 99.5% (range: 96.5–100%). Major themes that arose during interviews are described below, with representative quotes presented within the text. To provide context while maintaining anonymity, we categorized women’s time of HIV acquisition after each quote as follows: “lifetime survivor”, which refers to a woman who acquired HIV near the time she was born, and “adult acquisition”. Subheadings indicate major themes and are organized into four categories: complex and continuous decision-making, factors influencing feeding choice, impact of the guidelines on decision-making, and decision-making influencers. Factors influencing feeding choice are further subdivided into important considerations, including bonding and maternal identity, health of the infant and mother, autonomy, risk of HIV transmission, fear of formal and informal repercussions, concerns about breastmilk supply, convenience, fear of HIV status disclosure, religion, and feeding experiences with prior children. Exemplar quotes for each of the factors influencing infant feeding choice are presented in Table 2.

Table 2.

Exemplar quotes of each decision-making factor and the feeding method that the factor was associated with.

Decision-Making Factor	Quote
Bonding and Maternal Identity	I feel like, like with breastfeeding like for me, I can connect with him. … when you just have a baby like it’s all strange, you know. You’re just looking at that creature and stuff, like I just wanted like one-on-one to bond with him and I felt like, you know, it was a perfect time. (Participant 5: Adult acquisition, breastfed)
	I think about that a lot. I’m not gonna lie. It makes me sad because I feel like, you know, I do want to have that breastfeeding bond with my child, but at the same time I still think I’m gonna have a bond with her, you know. I talked to her while she’s in the womb. Now, you know, she knows who I am. I’m gonna always do skin-to-skin with her, talk to her, and love her so much. I just think that, you know, it’s not gonna matter, because I’m gonna show her so much attention, and she’s gonna be so spoiled that, you know, she’s not even gonna recognize that she didn’t get [breastfed]. (Participant 16: Lifetime survivor, formula fed)
	I’m from Africa. So, I grew up seeing people breastfeed like that’s, that’s still impacted in my mind like it’s still there. So, for me, with when it comes to maternal instincts like it’s just breastfeeding, like that’s it for me. So that’s why I think I’m still held on to that. (Participant 19: Adult acquisition, breastfed)
Health of the Infant	I do my very best to be like really healthy. And with formula and just baby food, how things have changed over the last 10 years since I’ve last given birth, I know that the food is not the same. Like there’s metals in baby food now. There’s, you know, all this extra stuff that they put in the formula. It just wasn’t my preference, just because I can’t guarantee what my kid is getting. Whereas if I breastfeed, I know that’s 100% determined on what I eat. The healthier I eat, the more nutrients she’ll get, the more fed she’ll get. It’s just a lot healthier for her, so that was always the option for me. (Participant 14: Adult acquisition, breastfed)
Autonomy	And then I just want every decision to be up to me because … I’m the one that carried them into this world and pushed them out my body so … whatever is going on with them, I want it to be my decision and not someone else’s decision. (Participant 18: Adult acquisition, breastfed)
Risk of HIV Transmission	And because I’m not God, and I don’t know what would have happened with my daughter, I decided to still formula feed. Breastfeeding, the numbers weren’t low enough. It wasn’t a 0 for me to go ahead and put her life at risk in order to do so. Although the numbers are still low, it wasn’t low enough for me to be comfortable with breastfeeding. (Participant 9: Lifetime survivor, formula fed)
	You know, it is not a complete 0. So how comfortable are we? Would we be comfortable and fine if just somehow we ended up in that scenario where we were that, you know, less than 1%? And I think the conversation always kept coming back to all the other benefits, and how low the risk was. … it wasn’t just like an easy decision. [My husband and I] did have lots of talks, made sure that this is actually what we wanted to have happen to get to this point. So yeah, so it was a factor, but not enough to keep us from not doing it. (Participant 2: Adult acquisition, breastfed)
	So, like a chance of 1%, less than 1% risk, that’s the same risk that comes with U=U when it comes to unprotected sex between discordant couples. I take that risk all the time, you know. (Participant 4: Lifetime survivor, breastfed)
Fear of Formal and Informal Repercussions	You do get mad because it’s like a violation of your privacy, like it’s, it’s your family, you know, and you have someone telling you, “you have no choice.” And then there’s that like background, “Well, I might call CPS on you,” you know, you can’t, it’s like you can’t trust them. (Participant 12: Adult acquisition, breastfed)
	It’s one thing to make decisions for myself, but to make a decision for another human being, I’m open to hearing from other people so I make the right decisions. Because I don’t want her to come back years later and be like “you are a horrible mom,” you know. (Participant 13: Adult acquisition, breastfed)
Concerns about Breastmilk Supply	But I’m okay with packing up my, packing up formula and knowing that I always have milk because I don’t know how my body will produce milk, and that could be stressful on myself as well. (Participant 9: Lifetime survivor, formula fed)
	So, one thing that was worrying me was, if you’re breastfeeding, you cannot mix it with formula … keep in mind, the baby was (born very big). So, I, I don’t know. Mentally I also start freaking out. He might need more milk than like a regular baby because he’s like a double size, almost. (Participant 3: Adult acquisition, breastfed)
Convenience	So yeah, also, just the complexity of bottle feeding. I don’t know. Like we, my husband and I travel a lot. So, breastfeeding just so much more simple when you’re camping, than trying to figure out how to like wash bottles and heat them up. (Participant 1: Adult acquisition, breastfed)
	At the time I worked night shift. So, it would be more convenient to just like make a bottle with formula instead of like pumping and storing the milk, stuff like that. (Participant 8: Lifetime survivor, formula fed)
Fear of HIV Status Disclosure	But there was so many questions from family, you know… So, when I stop, they were like, “Why did you stop?” You know, why do, “Why are you giving him formula? It’s not good. Give him the breastmilk and stuff,” you know. I just tell him “Oh, he don’t want it,” and stuff like that, you know, there was just so much question, and thinking how to like, answer those questions from family. (Participant 5: Adult acquisition, breastfed)
	My auntie that don’t know about my situation keeps my baby a lot. So, I would have had, she would have knew about my situation, too, if she would have got that hold of that medicine if I was breastfeeding. (Participant 17: Adult acquisition, formula fed)
Religion	I feel like God intended it to be this way for a reason, and for Him to make it to for us to produce milk. Why would we not utilize that tool to make sure that the baby get all the nutrients that he or she needs? (Participant 15: Adult acquisition, breastfed)
	But I have heard that, you know women can pass it on by breastfeeding. Yeah, and so [that] just really like scares me. I already have to deal with [the] birth. I don’t wanna double it down. You know what I’m saying? Like, you know, God is like, “Okay. You know, I made sure she didn’t have HIV when you gave birth to her. But now you’re really taking a chance, another chance, and you really don’t have to.” (Participant 16: Lifetime survivor, formula fed)
Feeding Experiences with Prior Children	If I breastfeed my first child, I don’t wanna like be unfair … to the other children because of what I have. (Participant 5: Adult acquisition, breastfed)
	And I still remember how, how I felt when I did it with my other kids. So, I’m like, I still want to do this with you, like, I still want to experience that with you. (Participant 19: Adult acquisition, breastfed)
	My last baby was bottle fed with formula. … I guess it was what was familiar to me. This is my second baby. (Participant 10: Adult acquisition, formula fed)
Health of Mother	But I feel like there’s nothing like breastfeeding that really kind of helps just set your body back to what it should be. … and I feel like the mental health side of things, you know, just breastfeeding helps to bridge that gap also. (Participant 2: Adult acquisition, breastfed)
	It’s just gonna be me again, I do not want to get pregnant again, because I would probably just formula feed. I would probably formula feed. It’s a lot of stress. And it’s not because of, that’s what I’m saying. It’s not even, the stress is worse than the actual risk of less than 1%. The stress right there is not okay to live with. I’ve never had to take high blood pressure meds. I just got off of them last week. (Participant 13: Adult acquisition, breastfed)

Complex and Continuous Decision-Making

Although the initial infant feeding decision is usually presented as a binary choice – breastfeeding versus formula feeding – mothers mentioned considering additional choices such as pumping their milk (with or without pasteurization), supplementing with donor milk, and mixed feeding (i.e., providing both breastmilk and formula). These additional options sometimes provided an added level of flexibility for mothers, allowing them to strike a balance between the factors that were deemed most important to them. However, these options were not possible or practical for all women. For example, some mentioned the cost and accessibility of donor milk as being prohibitive, and others highlighted complexities associated with mixed feeding due to concerns for higher risk of HIV transmission.

Infant feeding method selection is often thought of as one choice made at a single point in time. However, it was made clear throughout interviews that infant feeding decisions are more complex, involving a series of decisions over the course of pregnancy and a baby’s early life. After the initial feeding method is determined, mothers who choose to breastfeed must then consider whether to exclusively breastfeed, pump and pasteurize breastmilk, or mixed feed with a combination of formula and/or donor milk; the duration of breastfeeding and when to introduce solids; infant viral load testing and prophylactic medication regimens; and how to manage periods of increased risk, such as when a maternal viral blip is detected or mastitis occurs.

An additional consideration is the level of transparency mothers choose to have with their providers. One participant communicated that although her provider wrote prescriptions for her baby to remain on prophylactic medication for the duration of breastfeeding, the mother stopped administering the medication after an initial 2-week course of zidovudine. When the interviewer probed more about this decision, the mother stated that she weighed the possibility of HIV transmission against the possibility of medication side effects and felt that the risk of the medication was greater than the risk of breastfeeding without it. Another participant had a frustrating encounter with her pediatrician when discussing that she switched to mixed feeding when her baby was not getting enough breastmilk. The pediatrician gave her conflicting advice (i.e., that she should not mixed-feed but that mixed feeding did seem necessary to ensure adequate nutrition) without providing risk mitigation support, which the mother found confusing and stressful. When asked how she would change the interaction she said, “I like to be really honest with the doctors. I feel like I probably wouldn’t have been so honest” (Participant 18: Adult acquisition, breastfed).

Although the bulk of decisions after the initial feeding choice fall to mothers who choose to breastfeed, feeding with formula and donor milk also requires additional considerations. Mothers who choose to formula-feed then need to select the specific formula they will use and often need to reassess that choice if they feel that the infant is not tolerating the formula well. This can be particularly complicated if the family receives benefits from Women, Infants, and Children (WIC) [30] and the preferred formula choice is not covered, or in the event of formula recalls and shortages. For those who choose to exclusively feed or supplement with donor breastmilk, milk could be obtained either through formal (e.g., milk banks) or informal (e.g., social network) channels; both options were represented among the mothers in this study. Monetary concerns also come into play regardless of choice, but especially with donor milk, as out of pocket costs can be prohibitive.

While some of these are choices faced by anyone feeding an infant, they have added layers of complication for WLHIV. Although many breastfeeding women, regardless of HIV status, experience challenges such as cracked, bleeding, or blistering nipples, women in our study explained how these complications take on new weight in the context of maternal HIV, due to their association with increased transmission risk. When discussing how she managed periods of increased transmission risk, one participant stated:

My boobs looked chafed sometimes, you know. And I was freaking out when other mothers wouldn’t necessarily freak out, because, like, it’s okay, they come from you. But because of the virus in my body, it’s like these normal things that come with breastfeeding like chafing, or stuff like that, sometimes bleeding, it was very scary, you know.

(Participant 13: Adult acquisition, breastfed)

It was also not uncommon for mothers to second-guess their initial infant feeding decision once they had given birth, or to express anxiety or discomfort over the choice they made. One participant who intended to formula feed, when asked if her birthing hospital helped her eliminate her milk supply, said:

I don’t think I asked. … Just because, although I knew that I wanted to formula feed, I just, just in case I had a last-minute change of heart like, you know, hey, just try it out just because I can, you know?

(Participant 9: Lifetime survivor, formula fed)

Another participant relayed her experience of questioning her decision to breastfeed because of the lack of support she felt she received from providers:

Me and my husband actually, one morning we cried, questioning our decision. Maybe we were wrong to do this. Maybe this is not something that is easy. And then we cried. I was like, I asked my husband, “have I made a wrong decision, you think?”

(Participant 3: Adult acquisition, breastfed)

Factors Influencing Feeding Choice

Participant interviews highlighted the complexity and multi-faceted nature of the infant feeding decision-making process. Although one participant expressed that the sole factor she considered was the risk of HIV transmission to her infant, other participants described multiple considerations that went into their decision-making process that often worked in opposition to each other. Certain considerations, described below, were associated with leading mothers specifically towards breastfeeding or formula-feeding. However, importance assigned to each factor differed between individuals depending on their own personal preferences and beliefs. As one mother stated:

Cause don’t nobody else got to live your life but you. We all could have the same disease, but everybody life is different.

(Participant 11: Adult acquisition, formula fed).

Importantly, there was also a subset of considerations which could sway a mother towards either feeding option depending on their personal viewpoint (Figure 2).

Figure 2:

Venn diagram showing the factors that participants considered when deciding how to feed their baby. Some factors were associated only with breastfeeding or formula feeding, whereas others swayed mothers towards either feeding method depending on their beliefs and priorities.

Factors Associated with Considering Breastfeeding

Bonding and Maternal Identity

Participants commonly mentioned the bonding experience as a motivator in breastfeeding. This was a common motivator among women who breastfed and was also mentioned by participants who ultimately formula-fed as a reason they would have liked to breastfeed. The association between bonding and breastfeeding was closely related to participants’ sense of maternal identity. For some participants, perceptions of maternal identity were driven by norms in their community surrounding breastfeeding. This was seen predominantly among mothers who were born outside of the US. For other participants, the infant feeding practices of their social circle had little to no impact on their own preferences regarding infant feeding.

Health of the Infant

While considering the risk of HIV transmission through breastfeeding, other factors related to health of the infant were important to mothers’ consideration of breastfeeding. Breastmilk was viewed as having a positive impact on infant health, particularly through the provision of maternal antibodies to the baby. It was also viewed as the more natural feeding option, with many mothers expressing concern about the ingredients in formula as well as recent recalls.

Autonomy

Finally, some mothers expressed that their desire to make their own choice was a motivating factor in breastfeeding. For some participants, this sentiment was linked with maternal identity, and the feeling that as the mother they should have full autonomy in making decisions on behalf of their babies irrespective of their HIV status. Participants also mentioned not wanting to be forced into decisions or made to feel guilty because of their status.

Factors Associated with Considering Formula

Risk of HIV Transmission

All participants, whether they ultimately breast- or formula-fed, thought deeply about the risk of HIV transmission to the infant when weighing feeding options. More than any other factor, the mother’s personal values and beliefs played a large role in how the risk of HIV transmission was perceived. Some participants felt that any risk of transmission was unacceptable, while others felt that the <1% risk of HIV transmission was low enough to be outweighed by the advantages of breastfeeding. The concept of undetectable=untransmittable (U=U) was also mentioned by multiple participants, equating the risk of unprotected sex to the risk of breastfeeding. While some participants were clear in their understanding that U=U does not apply to breastfeeding, others expressed frustration in trying to reconcile the discordance between U=U and the risk of transmission from breastfeeding.

Fear of Formal and Informal Repercussions

Fear of repercussions other than potential HIV transmission to the infant, both formal and informal, were significant reasons for considering formula feeding. Although the updated guidelines specifically state that a parent’s infant feeding choice is not an appropriate reason to involve Child Protective Services, many mothers mentioned this possibility. While some felt comforted by this statement in the guidelines, others were less confident that providers would abide by it. Potential informal repercussions took many forms, including a fear of being viewed as a bad mother, a desire to stay on good terms with their providers, and how infants might feel about the mother’s feeding decisions when they were older.

Concerns about Breastmilk Supply

Mothers consistently mentioned being told by providers that they should not mixed feed, and for many mothers this created anxiety around having sufficient breastmilk supply. This was a concern both when making the initial feeding decision, as well as once the mother had initiated breastfeeding.

Shared Feeding Responsibility

Although we anticipated that shared feeding responsibility with a co-parent would be a driver that influenced mothers to choose to formula feed, this was only mentioned by one study participant. The only instance in which it was mentioned was in the context of a formula feeding mother, who had breastfed her prior children who were born before her HIV diagnosis. She indicated that sharing the feeding responsibility was not enough to overcome the exhaustion she associated with formula feeding her youngest child, which for overnight feeds required her to fully wake up to prepare bottles, whereas she was able to remain in bed to breastfeed her older children (Participant 11: Adult acquisition, formula fed).

Factors Associated with Considering both Breastfeeding and Formula

Convenience

The motivations and considerations described above all consistently swayed mothers towards either breastfeeding or formula feeding. However, some factors had the potential to push mothers in either direction depending on their personal values and beliefs. One such consideration was convenience, which mothers defined based on the priorities and lifestyle of their families. For some, breastfeeding was seen as more convenient because it eliminated the need for bottles and other supplies. For others, the ability to prepare a bottle of formula without disrupting other routines, such as work schedule, was the more convenient option.

Fear of HIV Status Disclosure

Fear of HIV status disclosure was also an important consideration for mothers, which swayed some towards breastfeeding but others towards formula feeding. Some women, particularly those from cultures where breastfeeding is common, spoke of their experiences feeling that they had to come up with excuses when asked why they were using formula. Other mothers, however, indicated that the biggest risk of status disclosure came from the infant prophylaxis that they were told would be required if they chose to breastfeed.

Religion

Religion and belief in God were cited by some mothers as important factors in their decision-making. While some participants mentioned faith groups or prayer as a means of making and feeling confident in their decision, others described ways in which their beliefs had a more direct impact on what they felt was the best feeding option for their baby. For example, one mother expressed the feeling that her body was made to feed her baby and therefore wanted to breastfeed. On the other end of the spectrum, one mother relayed concern that while God might protect her child from acquiring HIV during childbirth, He may view breastfeeding as an additional, and unnecessary, risk.

Feeding Experiences with Prior Children

Feeding experiences with prior children also played an important role in shaping mothers’ priorities. Women who had breastfed children prior to their HIV diagnosis often wanted to have the same feeding experience with their younger children. This was expressed as a desire for fairness and equality for their children, as well as wanting to relive positive breastfeeding experiences. Mothers who had formula fed prior children sometimes wanted a different feeding experience with subsequent children, and sometimes were comfortable continuing to formula feed. Many mothers who had children prior to the 2023 guideline change had formula fed their babies and sometimes expressed a desire for a different feeding experience with subsequent children, particularly if they felt that breastfeeding wasn’t previously an option for them.

Health of Mother

While the health benefits to the mother from breastfeeding were less commonly mentioned than the health benefits to the infant, this was still a factor that mattered to some mothers, particularly breastfeeding’s impact on hormone regulation and postpartum depression. However, some mothers also mentioned experiencing high levels of stress when breastfeeding that negatively impacted their health. Stress associated with breastfeeding was linked to multiple other feeding considerations, including fear of HIV transmission, concerns about breastmilk supply, and fear of formal and informal repercussions. A few mothers also indicated that the stress they experienced while breastfeeding their child would be a consideration when deciding how to feed other children in the future.

Impact of the Guidelines on Decision-Making

Many participants expressed that they were unaware that breastfeeding was a possibility prior to the revision of the infant feeding guidelines, and it was the revision of the guidelines that triggered the initiation of their decision-making process. Participants relayed their feelings of surprise that they “could” or “were allowed to” breastfeed and often felt that it was the existence of the revised guidelines that opened the door to the possibility.

This is my third baby. And I, on when having my first … I brought the question up to doctors [about breastfeeding] at that time. And so back then it was already a “no.” Just blunt “no.” No further discussion. And then, when we chose to have our second, it was just kind of the understanding that that was the same. And so then, when [my third child] came along, my infectious disease doctor is actually the one who handed me the new guidelines and said, “I think you actually can do this now.”

(Participant 2: Adult acquisition, breastfed).

This realization was frequently met with strong emotion, particularly among lifetime survivors and women who had children prior to the guideline change.

I wasn’t upset about the idea of not being able to breastfeed because it was driven in me that you know, you’re positive and all this comes with being positive. So, just the perinatal perspective of being positive, it’s just its own lifestyle, you know. … So, it was just, it wasn’t something that I was upset about. … Maybe I was just numb to the idea, you know, oh well you can’t, you know, ‘cause I remember oh I want to be able to have unprotected sex someday, oh, can’t be in a relationship, you know. … [You know,] it’s just you’re living with this HIV so that’s just, you know, the law of land, you know, as you know it. So, I never even thought about it, never cared to think about it. Never cared to like, you know, pick at those, those “healed cuts,” you know. … But when [my provider] brought [the possibility of breastfeeding] to me, that opened up channels that I didn’t even know was there.

(Participant 4: Lifetime survivor, breastfed)

Two women we spoke to breastfed prior to the change in US guidelines. During interviews, both discussed guidelines from the WHO and other countries, expressing frustration at their perception that the US was “behind” when it came to infant feeding guidelines. Despite this frustration, the existence of breastfeeding-permissive guidelines in other countries provided a sense of security in making the decision to breastfeed.

Even before the US Guidelines changed like we were pretty confident in [breastfeeding], because, like most other first world countries, their guidelines already were like “you should support a breastfeeding mom who chooses to breastfeed.” And then, of course, in like developing countries that’s long been the norm as well and the research has shown that it’s relatively low risk to do that. … If I was in the UK, if I was in Australia or whatever like, I would probably be getting support from my providers. And so, we felt comfortable with the decision to breastfeed.

(Participant 1: Adult acquisition, breastfed)

Decision-Making Influencers

When asked whether the mother shared the decision-making process with anyone else, most mothers expressed that they alone held the decision-making power regarding infant feeding. Although some mothers did seek out the opinions of friends and family members, they indicated that it was the opinions of those with knowledge about HIV-related topics that held the most sway – specifically, specialized providers and other mothers living with HIV.

The only people that I was gonna consider, as far as making the decision was [the] people that knew, like [author of a book about breastfeeding with HIV]. … I did tell one friend, and he was not supportive. He has HIV and I thought he would be understanding. But he, you know, called me selfish, and he was just like, “you’re such a selfish person for like even considering it.” And so yeah, so times like that, I was like, “Okay, is this selfish of me to want to breastfeed her?” But then I would speak with [another mother with HIV who breastfed], you know, or [the author], and they’d be like, “No, it’s not selfish,” and I would trust them over other people. … People that are in the work and like, that are doing, that are like seeing real life examples and like working with women, and like those, of course, I’m gonna take into consideration. So, I trusted their, the work that they’ve done and, or the experiences they’ve had personally.

(Participant 13: Adult acquisition, breastfed)

I did get other people’s opinion, but also, can’t nobody really give you an opinion on how to make you feel, especially if they’re not going through what you’re going through and know how you would feel. So, it’s not too many people to really talk to about what I should do.

(Participant 9: Lifetime survivor, formula fed)

Mothers who had a co-parent shared that they discussed feeding options with their partners, but that the partners tended to play more of a supportive role than a decision-making role. Mothers who chose to breastfeed described having more extensive conversations with their partners than mothers who chose to formula feed, primarily to ensure that the partner was well-informed and comfortable with the potential HIV transmission risk.

My husband is the type that doesn’t really speak up on things. He’s just willing to support like my decisions, and I just sent him a lot of links to read, you know. And he did say, he’s like, … “to be honest with you, I am a little concerned. Like what if he does get it?” But then, he said, “but if he does get it, [he] can live a normal life, because you live a normal life.” He normalizes me more than I normalize myself, you know.

(Participant 12: Adult acquisition, breastfed)

Both times I have just support from a partner, you know. Because this, this is my area. They didn’t know too much about it. … And so, with breastfeeding being one of those topics, you know the guys, they really only think about it as much as “how can this affect you and I?” You know, sex and things like that. But the breastfeeding that’s really more so all on me, you know, ‘cause that goes into mothering and stuff.

(Participant 4: Lifetime survivor, breastfed)

Many participants had not shared their HIV status widely, which complicated their ability to solicit feeding advice from outside of their care team. This was true even among co-parents, as not all women had disclosed their HIV status to their partners, limiting the partner’s ability to contribute to decision-making.

[Breastfeeding was] really a decision I made all my own, because there’s not a lot of people that is, that I’ve disclosed my status to. So, there’s, there’s only so much advice somebody can give me without knowing the full truth. So, I kind of just made the decision on my own. Once my doctor said that I was able to do it, I kind of just took it and like ran with it.

(Participant 18: Adult acquisition, breastfed)

My partner was supportive, kind of. He didn’t know the whole situation, but he was supportive in breastfeeding and not really too much formula feeding. … my partner don’t know I’m HIV positive. So, he was more supportive on the breastfeeding and in her getting nutrition the right way. He’s more into nutrition and stuff.

(Participant 7: Adult acquisition, breastfed)

Despite most mothers wanting to be the primary decision-maker for how their baby was fed, their experiences of feeling empowered to make these decisions varied. While some participants had providers who fully embraced collaborative decision making, others described having to seek out a new provider who would support the choice to breastfeed. Some participants described a lack of access to providers who were willing to support their feeding choice, leaving them feeling unable to feed their baby in the way they wanted. Even among mothers who felt empowered to make the initial infant feeding decision, there were instances where they felt constricted by the uncertainty of ongoing support.

I wanted to breastfeed, but the doctors kept telling me “No.” The nurse said I could since I take my medicine and all of that, but I ultimately decided to do Enfamil because the pressure from the doctor saying, “that’s not a good thing to do” and all this that and the third. So, I was like, “forget it then, I’ll just get them Enfamil,” but I wanted to breastfeed so bad.

(Participant 11: Adult acquisition, formula fed)

Ultimately, mothers were clear in their desire to make the feeding decision that was best for their baby and felt that they as the mother should hold decision-making authority. When asked what advice she would give providers regarding infant feeding in the context of maternal HIV, one mother said:

I want a provider to like, first of all, I want them to know that I love my baby more than they do. … Treat me like that, like just assume that I’m making decisions with my baby’s best interest in mind.

(Participant 1: Adult acquisition, breastfed)

Discussion

This study was motivated by a desire to explore the infant feeding decision-making process of WLHIV given the context of changing US guidelines. Findings from this study highlight the complexity of the decision-making process, and the ways in which a mother’s unique priorities and perspectives can influence her ultimate feeding decision. Importantly, this study also made clear that the decision-making process extends far beyond the initial feeding decision, and that anxiety and second-guessing around these decisions are not uncommon.

Prior prohibitions against breastfeeding were built on the premise that any risk of HIV transmission is unacceptable, but this study makes clear that the drivers behind an infant feeding choice are numerous and interconnected. There is no one-size-fits-all approach to infant feeding, and providers must keep this in mind as they counsel WLHIV on their options. A recent survey study of infectious disease pediatricians found that some providers were resistant to implement the new infant feeding guidelines [31]. One reason for the opposition was a perceived moral imperative to eliminate all risk of HIV transmission to the infant [31]. The mothers who were interviewed for this study, however, gave serious consideration to the HIV transmission risk and none of those who chose to breastfeed made the decision lightly. Instead, participants carefully weighed their personal and familial priorities and the risks and benefits of different feeding methods before ultimately making the decision that they felt was best for their baby and themselves. It is noteworthy that a meta-synthesis of infant feeding decision-making describes an analogous factor weighing process among mothers not living with HIV, which highlights the fact that while the factors that are included in the infant feeding decision-making equation may differ based on maternal HIV status, the care and thought that goes into the decision is similar [32].

While infant feeding method selection is often portrayed as a single decision at a relatively discrete point in time, this study highlights the fact that infant feeding actually consists of a continuum of choices made over an extended period. Parents may choose to use one method exclusively, or a combination, and subsequent considerations depend on the feeding method(s) selected. In the context of maternal HIV, some decisions, such as whether to mixed feed, become particularly important given their potential to increase HIV transmission risk to the infant [1]. Our study cohort primarily chose to breastfeed and/or formula feed, with fewer woman choosing to utilize donor milk. Decision points relating to donor milk were therefore less well-characterized through interviews. Existing literature on the use of donor milk highlights the potentially prohibitively high cost of donor milk and limited insurance coverage [33,34]. WLHIV who wish to eliminate the risk of HIV transmission to their infant while still receiving some of the benefits of breastmilk by using donor milk may therefore need to balance the desired length of use against cost. Obtaining donor milk from informal channels, such as through family, friends, or social media, may be a most cost-effective option, but comes with additional risk [34–36]. Formal milk banks require extensive donor testing and pasteurize all donated milk, protections that are not in place for informal channels. WLHIV acquiring donor milk through informal channels may therefore want to request proof of health from the donor or pasteurize the milk once they receive it to limit potential risks [34–36]. Figure 3 synthesizes the decision points that arose out of study interviews with other considerations found in the literature.

Figure 3:

Illustration that represents the fluidity and interconnected nature of infant feeding decision-making. Over the course of an infant’s early life, mothers may choose a single feeding method or a combination, or begin with one feeding method and later switch to, or add, another feeding method. For example, a mother may begin feeding with breast milk and then change to formula, or begin with both donor milk and formula supplementation. The considerations associated with each method are divided into themes, represented by the different colors listed in the legend, with shading indicating that a particular consideration fits into multiple categories. Decision points that came from the literature and were not explicitly mentioned during study interviews are indicated with italic text.

Prior studies have found that family members other than the mother play an important role in determining how an infant is fed, regardless of the HIV status of the mother [37–39]. In contrast, participants in this study generally expressed that they felt they were and should be the primary decision-maker. Mothers in a co-parenting relationship often described having conversations about infant feeding with their partners, but ultimately the mother perceived herself to be the driver behind how an infant was fed. This aligns with findings from a recent Philadelphia-based interview study, conducted prior to the US infant feeding guideline change, which found that mothers felt their own perceptions and beliefs took precedence over the thoughts of others in determining the best feeding method for their baby [40]. Differences between these US-based studies and prior work may stem from the fact that studies on infant feeding motivations have generally been conducted in low- and middle-income countries, where infant feeding choices play a different cultural and societal role, and where familial influence over parenting choices may be higher [41–43]. Additional work in this area has found that WLHIV heavily rely on the advice of providers when making infant feeding decisions, and that adequate counseling and a collaborative patient-provider relationship are important factors in the decision-making process [40,43,44]. When the wide variety of maternal viewpoints described in our study is put into the context of existing literature, it clearly underscores the importance of unbiased, personalized counseling where the parents’ priorities and beliefs are given precedence over the providers’.

There were many similarities between our findings and decision-making factors considered important by mothers not living with HIV. Commonly cited reasons for breastfeeding, which are echoed in this study, are desire for mother-infant bonding, a strong association between breastfeeding and maternal identity, feelings that breastfeeding is healthier and more natural, and concerns about formula recalls and shortages [45–49]. Concerns about breastmilk supply and sharing the feeding responsibility with another caregiver are often mentioned in the literature as factors associated with formula-feeding [50–52]. Although mothers in our study were influenced by concerns about breastmilk supply, shared feeding responsibility was not a motivator for the mothers we spoke to. It is possible that in WLHIV, the unique concerns surrounding their HIV status are so strong that other factors, such as shared feeding responsibilities, rarely factor into the decision-making process. However, as we did not ask participants to rate the relative importance of every potential feeding motivator, we are unable to confirm this theory with the present data.

An important finding that arose from this study is the idea that some factors may sway mothers towards either breastfeeding or formula depending on the mother’s perspective. To our knowledge, this idea has only been explored in one other instance, among a group of mothers who experienced breastfeeding-related trauma. In that study, Palmér et. al. found that a prior traumatic breastfeeding experience made some mothers yearn to breastfeed subsequent children, but that it made others fearful of re-living the situation and more likely to formula feed [53]. This aligns with our finding that experiences with prior children could influence mothers towards either breastfeeding or formula. Although prior studies have associated convenience with either breastfeeding or formula feeding individually, this paper is the first to suggest that perceived convenience may sway a mother towards either breastfeeding or formula feeding depending on her individual context [51,54].

Regardless of how mothers choose to feed their babies, multiple studies have found that feeding choice may place emotional strain on the mothers and create feelings of unease regarding their choice [55,56]. This sentiment was echoed by many of our participants, with even mothers who were ultimately happy with the choice they made relaying stories of feeling conflicted, guilty, and anxious related to infant feeding. Prior studies have also found that unanticipated challenges and feelings of unpreparedness can increase shame and guilt around infant feeding [57]. In the context of maternal HIV, when unanticipated challenges can also come with an increased risk of HIV transmission, the emotional impact on the mother may be compounded. Care providers must be cognizant of the emotional strain mothers may experience regardless of infant feeding method and provide non-judgmental feeding counseling and support that includes potential feeding barriers and solutions.

Among mothers who chose to breastfeed, concerns about milk supply were common. The anxiety surrounding the production of adequate milk is widespread among breastfeeding mothers regardless of HIV status, and has been cited as a significant motivating factor in initiating supplemental formula feeds [52]. The American Academy of Pediatrics and WHO recommend exclusive breastfeeding for the first six months of life. This recommendation is challenging for many women due to systemic barriers to successful breastfeeding, including a lack of protected maternity leave, little to no workplace support, bias in the healthcare system, and inadequate health system support for breastfeeding mothers [52,58,59]. While there are significant structural barriers to breastfeeding among all mothers, they are often more pronounced in WLHIV due to intersecting vulnerabilities, including higher rates of poverty, substance use disorders, and experiences of racial discrimination [60]. Furthermore, the consequences of mixed feeding may be larger in WLHIV due to the potential for increased HIV transmission risk. It was notable that none of the participants in our study explicitly mentioned systemic barriers as a factor in their decision-making process, although many participants discussed barriers when implementing their ultimate feeding choice. It is possible that the anticipation of systemic barriers influenced decision-making in a more subtle way than the other factors discussed here, and future research should examine whether and how knowledge of such barriers may impact infant feeding decisions. Given the reality of barriers to breastfeeding that have been described in the literature, it is important for healthcare providers to anticipate and counsel about these issues when breastfeeding is being considered.

We were able to obtain in-depth interviews from a diverse group of WLHIV across the US, and results from this paper are strengthened by the wide variety of thoughts and perspectives of our participants. Despite the demographic diversity of our participants, the perspectives included in this paper likely do not represent all birthing persons living with HIV, potentially limiting the transferability of our findings. Although we did not restrict enrollment based on gender identity, our study population was exclusively cis-gendered female, and it is likely that individuals of other gender identities may have additional or different infant feeding considerations. Additionally, while we had systems in place to allow for the participation of non-English speakers, all our participants spoke English, and we were therefore unable to gather perspectives on the unique issues faced by individuals who may rely on interpreters during medical encounters. While we were able to achieve thematic saturation in our study population, it is possible that additional themes may have arisen if individuals from these other populations were enrolled, which is a potential limitation of this study. Finally, we excluded interview data from nine participants who we suspected had misrepresented their eligibility for the study. Although we employed standardized methods to identify potentially ineligible individuals and attempted to re-screen participants as needed, it is possible that we excluded individuals who should have been included. However, we believe that this is unlikely and that the steps taken to mitigate the risk to study validity were sufficient. A full discussion of this process is outside of the scope of this paper, but is described in full elsewhere, including recommendations for future researchers [29].

To our knowledge, this is the first study exploring the infant feeding decision-making process in WLHIV in the US. Findings from our study are particularly important given the context of changing national guidelines that intend to increase choice and autonomy for birthing persons living with HIV coupled with providers who may be unaware of or unwilling to support the implementation of this increased choice. There are a few examples in the literature of successful programs in the US which support infant feeding decision-making, and breastfeeding, if desired, in WLHIV [61,62]. Reports from these programs highlight the importance of in-depth counseling and respect for patient autonomy when approaching the infant feeding decision-making process. This sentiment has also been echoed elsewhere, along with the need for family- and patient-centered counseling and implementation science initiatives to assess the impact of such initiatives [63]. Continued efforts must be made to develop comprehensive, unbiased counseling processes for infant feeding in the context of maternal HIV, and future studies are needed to assess such programs and gather feedback from WLHIV on the counseling methods that are and are not effective.

Data Availability Statement:

The data generated by this study are not able to be shared due to the sensitive content and inability to fully anonymize interview transcripts in which personal experiences were shared by participants.