“My body my baby”: a qualitative study examining drivers of infant-feeding choices among women living with HIV in Philadelphia, United States

Abstract

Before national guidelines related to infant feeding among people living with HIV (PLHIV) in the United States were changed in 2023, PLHIV were discouraged from breastfeeding due to the potential risk of perinatal HIV transmission. Potential health benefits to both mother and child coupled with the ability to mitigate HIV transmission risk with modern treatments now make feeding decisions more complex for PLHIV. This study examined personal and social determinants of feeding choice among PLHIV in the Philadelphia area just prior to the change in national guidelines. In 2022 and 2023, we conducted in-depth interviews with 28 PLHIV between the ages of 18 to 50 years old who had previously given birth, 22 while living with HIV. Participants who gave birth while living with HIV expressed that they had not been given the choice to breastfeed. When probed about how they would consider choice in a hypothetical future pregnancy in the new guidelines era, participants’ own knowledge and beliefs about what was best for their babies and themselves were consistently raised as the most influential factors. They relied strongly on their health providers for up-to-date knowledge. Advice from partners, family, and community was considered less influential for most.

Introduction

Before guidelines changed in 2023, people living with HIV (PLHIV) in the United States (U.S.) were usually discouraged from breastfeeding due to the potential risk of perinatal HIV transmission (Committee on Pediatric Aids, 2013). While provision of human milk and breastfeeding are the normative standards for infant nutrition and feeding (Meek & Noble, 2022), a maternal diagnosis of Human Immunodeficiency Virus (HIV) has long been considered to be a contraindication to breastfeeding (Van de Perre et al., 1991). Benefits of breastfeeding to infants and mothers are well-documented and include lower risk of infections, asthma, and later obesity in the child as well as lower rates of cancer and higher sense of wellbeing in mothers (Muro-Valdez et al., 2023; Victora et al., 2016). However, weighing these benefits against even a small risk of postpartum HIV transmission to an infant raises ethical challenges (Gross et al., 2019; Nightingale et al., 2024).

In some instances, PLHIV’s personal and cultural beliefs contradicted U.S. infant feeding guidelines, and prior literature has indicated that not breastfeeding for some came with a significant emotional cost that continued affecting them throughout their child’s infancy (Griswold & Pagano-Therrien, 2020; Harris et al., 2024; Pagano-Therrien et al., 2023; Tariq et al., 2016). Avoidance of breastfeeding can be challenging for PLHIV from communities that strongly promote breastfeeding as the best form of infant feeding and early parent/child bonding. For some PLHIV, family, community, and cultural and religious backgrounds not only influence infant-feeding choices but also satisfaction with their choices (Chaponda, Goon, & Hoque, 2017; Dunkley et al., 2018; Tuthill et al., 2019). However, health providers’ stated opinions and receipt of infant feeding counseling from healthcare providers can also impact these decisions. A survey of black women living with HIV in the Canada, Nigeria and the U.S. found that nearly all women “care” or “care very much” about their healthcare provider’s opinion about feeding their baby (Etowa et al., 2021). A study of PLHIV in Uganda reported that receiving infant feeding counselling from a health provider was the most significant determinant of exclusive breastfeeding (Operto, 2020).

HIV-related stigma also has an important influence on breastfeeding attitudes (Boucoiran et al., 2023; Odeny et al., 2016). The pressure to breastfeed and perceptions that arise in some communities when a mother chooses not to do so may persuade mothers to breastfeed or mixed feed to avoid disclosure of their HIV status (Boucoiran et al., 2023; Madiba & Letsoalo, 2013). PLHIV are sometimes concerned about their infant feeding practices becoming a catalyst for unwanted disclosure of their HIV status. For this reason, many PLHIV who choose not to breastfeed prepare “excuses” regarding why they are not breastfeeding to avoid suspicion about their health status (Greene et al., 2015).

The study reported in this manuscript was planned to clarify how PLHIV in a large U.S. city made infant feeding decisions in the past and how they thought they might make decisions in a future U.S. context more accepting of breastfeeding while living with HIV. The study was conceived when changes in the U.S. infant feeding guidelines for PLHIV were being considered but had not yet been enacted. Our goal was to understand what factors most strongly influence the infant feeding decisions of PLHIV in our setting, including both those who had (i.e., were not living with HIV at the time of a prior birth or gave birth in a setting with different guidelines) and those who had not been given the option to breastfeed. Our overall goal was to generate knowledge to help guide patient support during the guidelines transition.

During coding and analysis of the interview transcripts, we assessed relationships between the social and cultural norms and PLHIV’s breastfeeding choices guided by the Theory of Planned Behavior (TBP). The TPB states that one’s intentions to engage in a behavior are influenced by: the person’s attitudes toward the behavior, the person’s perception of subjective group norms concerning the behavior, and the extent to which the person perceives himself or herself to have control over the behavior (Ajzen, 1991). It is important to identify what variables predict and explain human behavior in specific contexts to understand how social determinants, including cultural or religious beliefs, can produce changes in intentions and how these changes are reflected in subsequent behavior. In the context of infant feeding among PLHIV, this will help identify both motivations for their feeding choice and the challenges likely to be faced while implementing their choices.

Methods

Sampling and recruitment:

The target population of the study consisted of persons living with HIV in the city of Philadelphia between the ages of 18 to 50 years old who were born female and previously delivered one or more children. We excluded individuals who had never given birth as our investigative team believed that having the lived experience of making an infant feeding decision was critical to inform the parents’ responses. However, we did not exclude PLHIV who gave birth outside of the U.S. or those whose birthing experiences preceded their HIV diagnosis as we understood that those diverse experiences were likely to be common among future birthing PLHIV in our context and might influence motivations. The protocol allowed for enrolment of non-English speakers with the use of a hospital medical translator.

Potential participants were identified by the investigative team and clinical staff at two tertiary HIV care sites: The Hospital of the University of Pennsylvania (UPenn) and Temple University Hospital (Temple). Clinical staff were informed about the study. When interviewers were available, clinical rosters were reviewed to identify potentially eligible individuals Prior to each clinical day, a research team member discussed the study with the patients’ HIV providers and approached a patient in clinic or by phone if the provider confirmed that the patient had previously born a child and if the provider perceived that they would likely be receptive to the study (e.g., no past opposition to being approached for research and no recent traumas).

The study protocol and all related documents were approved by the Institutional Review Board of the University of Pennsylvania (protocol # 833908) and a reliance agreement with the Temple University IRB (TU # 30527). Participants were compensated with a $30 gift card for their time completing the study interview.

Data Collection:

Data collection began at UPenn on February 11, 2022 and on August 1, 2023 at Temple. After eligibility and interest of potential participants was confirmed, informed consent was completed and interviews were scheduled to take place in a private location within the clinic. In-depth interviews (IDIs) were conducted by female interviewers (ELC, OM, ABM) and were audio recorded. The audio recordings were transcribed by a member of the study team and accuracy was confirmed by the interviewer. The IDIs were conducted following brief discussions of vignettes designed to gauge under what circumstances the women would consider breastfeeding (results to be presented elsewhere). The IDI’s began with open-ended questions regarding infant feeding preferences, with follow-up questions and probes designed to elucidate personal and social determinants of preferences (See Supplemental information for interview guide). Each participant also provided demographic information, including age, race, ethnicity, country of birth/origin, and relationship status.

Analysis:

A draft codebook was created (by CT) based on the Theory of Planned Behavior (TBP) (Ajzen, 1991) and review of initial transcripts. The full team then individually reviewed three of the early transcripts selected based on their demonstration of diverse and rich perspectives. This review guided revisions of the draft codebook which were undertaken collaboratively in a virtual team meeting, establishing consensus on code definitions and inclusion/exclusion criteria. Subsequently, all transcripts were double-coded (by CT and MZ) using NVIVO software (NVivo, 2023). Additional codes were created as themes arose outside of TBP and their inclusion/exclusion criteria were established in team meetings. Agreement between coders was examined after the first five transcripts and disagreements were discussed with an experienced qualitative researcher (EL). Cohen’s kappa coefficient was used to test interrater reliability of the data after all transcripts were coded. We aimed to continue interviews until thematic saturation was achieved.

Coded data were organized to represent prevalent themes as well as to clarify salient elements of TBP. Summarized data were then discussed with the full team to clarify and summarize themes and to gain further insight into factors that influenced feeding intentions in this cohort of PLHIV prior to preparation of the manuscript.

Results

In total 28 PLHIV participated in the study; two were from Temple and 26 from UPenn. All identified as female. Additional characteristics of the participants are presented in Table 1. Six participants did not give birth while living with HIV and an equal number were born outside of the U.S., five of whom were of African descent. Nine of the participants had prior experience breastfeeding, but all denied having breastfed after their HIV was diagnosed. All participants were English speakers. The mean percent agreement between the two coders was 98.6% and the kappa coefficient for interrater reliability was 0.77 for the full interview sample.

Table 1.

Sociodemographic of the Participants

Characteristics	Number (total N=28)	%
Race
White	3	10.7
Black or African American	22	78.6
Unknown / Unanswered	3	10.7
Birthplace
United States	22	78.6
A Country in Africa	5	17.8
Other	1	3.6
Relationship Status
Single	15	53.6
Married	4	14.3
Partnered, but not married	5	17.8
Divorced	2	7.1
Separated	1	3.6
Unknown / Unanswered	1	3.6
Highest Level of Education
Some High School	6	21.4
High school diploma or equivalent	9	32.1
Some college	11	39.3
Bachelor’s Degrees	1	3.6
Other	1	3.6
Since the time you found out that you were HIV+, have you given birth?
Yes	22	78.6
No	6	21.4
Since the time you found out that you were HIV+, have you ever breastfed?
No	22	78.6
Not applicable	6	21.4
Did you ever give birth before you found out you were HIV+?
Yes	12	42.9
No	16	57.1
Did you ever breastfeed before you found out you were HIV+?
Yes	9	32.1
No	4	14.3
Not applicable	15	53.6

Feeding intentions were clearly influenced by PLHIV’s attitudes towards the feeding option, subjective norms and perceived behavioral control. Inclusion criteria derived and applied to each of the codes and subcodes during the analysis process are outlined in Table 2. Quotations illustrating key points are summarized in Table 3 with explanations of the most commonly observed themes organized in the text below by TPB domain.

Table 2.

Summary of Codes Based on Theory of Planned Behavior

Domain	Codes	Subcodes	Inclusion Criteria
Behavior-Intention	Breastfeeding considered	N/A	Use when participants describe considering breastfeeding. Include comments related to wanting to breastfeed or considering possibly breastfeeding.
	Formula feeding considered	Specific to avoidance of HIV transmission risk	Use when participants indicate that the risk of HIV transmission through breastfeeding would influence feeding choice.
		Specific to reasons other than HIV transmission risk	Use when participants indicate factors that would influence the choice to formula feed other than HIV transmission risk through breastfeeding. Include comments about formula feeding intention here if the reason for not wanting to breastfeed is not specified.
Attitudes towards behavior	Perceived positives of breastfeeding		Use when participants indicate perceived benefits of breastfeeding.
		Avoidance of HIV-related stigma	Use when participants indicate breastfeeding avoids HIV-related stigma. Include statements that indicate not breastfeeding will yield assumption of HIV status.
		Maternal health	Use when participants indicate that breastfeeding impacts maternal physical or mental wellbeing. Include comments related to maternal weight loss and maternal mental health or fulfillment.
		Infant health	Use when participants indicate breastfeeding is beneficial to infant physical wellbeing or growth. Include comments about breastfeeding having nutritional value such as vitamins and/or antibodies, also comments about cognitive development.
		Cost/Convenience	Use when participants note the ease of breastfeeding relative to formula-feeding such as “portability” or if they specifically mention breastfeeding as being a cheaper option.
		Breastfeeding “natural”	Use when mention is made of breastfeeding being the most “natural” or breastmilk meant just for their baby.
		Mother-child relationship	Use when participants indicate that breastfeeding enhances mother-child bonding
	Perceived negatives of breastfeeding		Use when participants indicate perceived risks, cons, or harms of breastfeeding
		HIV transmission as a negative of breastfeeding	Use when participants specifically indicate concerns about HIV transmission to the child. Include comments about the virus itself or HIV-related burdens such as stigma being passed onto child.
		Perceived negatives of breastfeeding other than HIV transmission	Use when participants state negatives of breastfeeding unrelated to HIV. Include comments about physical discomfort and limited involvement of other caregivers in breastfeeding.
	Perceived positives of formula feeding		Use when participant share perceived benefits of formula feeding
		Comparable to breast milk	Use when participant states formula has same or similar nutritional value as breastmilk.
		Bonding with/shared responsibilities with non-lactating care providers	Use when participant states the formula feeding makes it easier to share responsibilities of feeding between care providers.
		Cost/Convenience	Use when participant states formula is easy to use and available when mother is not. Include comments related to free provision through WIC program.
	Perceived negative of formula feeding		Use when participants state perceived risks, cons, or harms of formula feeding.
		Perceived risks of formula	Use when participants state concerns for infant intolerance of formula milk and/or comments about formula being harmful.
		Cost/Convenience	Use when participant comments on the financial and time expense/investment of formula as a negative.
		Inferior nutrition/loss of health benefits	Use when participants state formula does not provide adequate nutrition. Include comments negatively comparing the nutritional value of formula milk to breastmilk.
Subjective norms	Family norms	N/A	Include comments made about the expectations of the child's father, grandparents, or other relatives.
	Community norms	N/A	Include comments made about expectations of or discussions had with other WLHIV and/or friends/neighbors, and if participant stated beliefs from their culture or religion.
Perceived Behavioral control	Autonomy	N/A	Use to characterize participant’s perceived ability to make feeding decisions for their baby. Include comments about choosing to not listen to family and community input.
	Lack of Autonomy	N/A	Use when mention is made of not being “allowed” to choose their feeding option due to laws/policies or other pressures.

Table 3.

Illustrative Quotes from In-person In-depth Interviews

Domain	Code	Quotes
Behavior-Intention	Breastfeeding considered	“I would give anything to breastfeed my child. Because I believe that breastfeeding is good. It’s the best and if I had it any other way I would definitely if I had the choice, I would definitely choose breastfeeding. I don’t, I, I come from a culture where there is strongly breastfeeding but that’s not my reason for wanting to, it’s personal.” (Participant 25) “I would like to breastfeed, but it depends on the status of my health like the situation. So, I don’t know. But I would very like to breastfeed.” (Participant 10) “I would breastfeed if my baby would take it, if he or she would latch on, I would breastfeed.” (Participant 13) “Oh, I would love to breastfeed my baby!” (Participant 19)
	Formula feeding considered to avoid HIV transmission risk	“If I could breastfeed I would. But it’s the chance I could pass the virus- Íd rather just formula feed. If I could breastfeed without passing the virus, I then would.” (Participant 8) “Well, I was told that it’s the possibility that the infection could be passed on so I didn’t want to take that risk.” (Participant 16) “If I have HIV, whether it would be undetectable or detectable, I would choose to formula feed my baby just for the safety of my child.” (Participant 18)
	Formula feeding considered for reason other than transmission risk	“I chose to bottle feed all my children because I always worked. Always, always in school. So, it was always more convenient for me.” (Participant 1) “I was never geared towards breastfeeding. It didn’t really have anything to do with the HIV… I was just never interested in breastfeeding even though you go to the appointments and they kind of push you toward it because it’s so healthy. I was just never interested. And it could have been just because I was still young. Like I was in my 20s working full time with 3 other kids by the time I had my last one. I’m thinking that’s time consuming. I don’t have time for that. I don’t have the patience for that. And I just didn’t want to do it.” (Participant 4) “I know for me even with my first child, even before I had HIV I never wanted to breastfeed. To me I felt like as a woman if you’re in a relationship, or even just period with a man, your boobs are kinda like sexual things… And I just can’t fathom like putting a baby towards that. Something that stimulates me for that, so to me it was like nah.” (Participant 11)
	Perceived positives of breastfeeding	Avoidance of HIV-related stigma “They look at you a little bit weird if you don’t start with breastfeeding first.” (Participant 21)
		Maternal health
		“And they say if you breast feed it helps stimulate weight loss, I don’t how true that is.” (Participant 11)
		Infant health
		“Well the benefits are mostly like, the women we have a certain immunity in our bodies we pass those antibodies onto them during like the process of the breastfeeding” (Participant 21) “But I know that there are like, intellect, for your intellectual ability is, to helps with your brain function and your overall health.” (Participant 2)
		Cost/convenience
		“You don’t have to go to the store to buy formula and all of that. It’s cheaper.” (Participant 13) “Don’t have the baby bottles, unless someone else is feeding your baby, but you won’t have to have milk, I mean you formula feed you have to go to the store and buy the milk.” (Participant 15)
		Breastfeeding "natural"
		“So it’s actually great for a baby. It’s actually better than formula fed because it’s natural.” (Participant 8) “And the benefits of breastfeeding is that it’s natural.” (Participant 7)
		Mother-child relationship
		“You see other people [that are not] positive and they’re just whipping their breast out and feeding their child… sometimes it makes HIV people feel less of a mother cause you see other people out here being able to breastfeed and we can’t.” (Participant 8) “Well, I definitely did want to breastfeed because I breastfed my daughter. So, I just feel like that’s a stronger connection that you build with the child.” (Participant 16) “Yes there’s a bonding connection with the mother and the child.” (Participant 20) “So, while, I’m calming her down, she’s actually calming me down as well.” (Participant 23)
	Perceived negatives of breastfeeding	Perceived negatives of breastfeeding other than HIV transmission
		“Just like you gotta pump, you gotta bag, gotta freeze. You gotta do this thing. I got 10 minutes in the morning.” (Participant 1) “…tenderness, super not touching tenderness, the cracking peeling sometimes.” (Participant 2) “Passing something on to your child that you may be unaware of…And not just HIV; it could be other things that’s internally going on with you. And the pain. It’s painful. I can’t make that more clear, the pain.” (Participant 7)
		HIV transmission as a negative of breastfeeding
		“With my condition transferring the virus would be the risk." (Participant 10)
	Perceived positives of formula feeding	Cost/convenience
		"But formula honestly is easier because of the pain. It’s less pain you have to go through the whole attaching and detachment of the child to the when it comes to breastfeeding. Formula kind of helps with that. And that also helps wean off child from breastfeeding and all of that as well." (Participant 7)
		Comparable to breast milk
		“ I mean it it does what breastmilk would do. It helps the child, the nutritions. It blows them up. But it’s almost the same benefit as breastfeeding.” (Participant 8) “Whether you, you know, choose to use formula is still getting those nutritions from the formulas as well you know it’s still food then for the baby, so you wanna make sure the baby is eating healthy.” (Participant 2)
		Shared responsibilities with non-lactating care providers
		"You know if you gotta put your baby in daycare or give I’m to a caregiver or whatever formula to me is just easier to me to just give them, like some already made formula and somebody can handle that.” (Participant 11) “You don’t have to worry about the mother being there to feed the child.” (Participant 21)
	Perceived negatives of formula feeding	The perceived risks of formula
		“The obesity; the irritation with the stomach, the bowels, the constipation; the constantly switching different formulas, trying to understand which form-vomiting and all that sort of thing.” (Participant 2) “The formula can be bad. It can be poison in it. Just recently it’s on the news like certain cases of formula have poison in it. It was contaminated or whatever. So, they had to take it out of the market and all that. It can be hard for the child. It could cause the child to have bad digestion problems, gas, all of that. It can hurt the child.” (Participant 7)
		Cost/convenience
		“Yeah, that’s one downside to it. If you don’t get WIC or you don’t work consistently, if your money’s not good, you can’t afford it. So, then you are trying to figure out what else to do.” (Participant 1) “I just know that sometimes that can be hard because, like I said, formula’s expensive.” (Participant 17)
		Inferior nutrition/loss of health benefits
		“The formula, for me it doesn’t have the same nutrients. It has some. It’s good, it’s healthy, but it’s nothing compared to the natural stuff.” (Participant 19) “You definitely get lack of nutrients. You don’t get the same as in breastmilk.” (Participant 24)
Subjective norms	Family norms	Partner’s opinion
		“Just, I’m not sure. I didn’t ask him about it. But he already know. He goes: “you can’t breastfeed." He knew that answer and I think "you can’t breastfeed, she gotta have bottle because of the disease you have." (Participant 12) “My partner was not in support of it. My partner felt that if I’m on medications it’s fine to breastfeed” (Participant 25)
		Family/friends opinion
		“Yeah, some people tried. Well, they’d be like " the baby is crying you need to breastfeed her" and I’d be like my scientist friends, I cannot say, they wanted to make sure I breastfeed my baby. Yeah, they pressured me but I didn’t, I was just scared of it. Yeah, so, I can see them suspecting something but I don’t have to tell you anything and I don’t have to breastfeed my child in front of you.” (Participant 19) “They be like, “oh, I thought you’d breastfeed. It benefits them.” And in my head I’m yelling “if I could, I would.” And so, I’ll make up an excuse but I don’t like people knowing my business. So it’s just, “I don’t, lack of milk, I haven’t, I didn’t produce enough so that’s why I’m feeding them formula milk.” (Participant 24) “But they would tell me it’s your decision cause that’s your baby. You do what you want to do. And what’s best for you and your baby” (Participant 3)
	Community norms	Community/neighborhood opinion
		“Oh you should breastfeed. It’s better for the baby because the formula ain’t shit. The formula don’t feed your child. It doesn’t nourishment on your child. You know breastfeeding sometimes can be a hazard for the mother so formula ain’t bad but don’t use this type of formula use the soy. I’ve gotten so many different opinions. I took it all in. Especially when as first-time parent with my first child I took everything in.” (Participant 7) “Like most neighborhoods, nowadays, even regulars, even regulars, mind they business. “Oh, you got a new baby how’s he doin’” things like that, but other than that there isn’t a lot of opinions.” (Participant 11)
		Culture/Religion beliefs
		“Yeah, people back home yeah, they’ll ask “are you breastfeeding?”…Because that’s very important in our culture…And if you said, “no, I'm not breastfeeding,” they…imagining things, “oh maybe she has a disease or something.” So, that was a subject I, I avoided as much as I could. The ones I could not avoid I had to lie and say, “oh yeah I'm breastfeeding.” Yes, back home, we actually breastfeed. We are encouraged to breastfeed exclusively.” (Participant 25)
Perceived behavioral control	Autonomy	“Cause it was my baby and I decide what I wanted to do.” (Participant 3) “Because being a young lady and a young woman I’m going to do what I feel is right for my child.” (Participant 7) “It’s ok to share stuff with each other, amongst each other, hear everybody’s input and stuff. It wouldn’t have affected my decision because my situation is my situation.” (Participant 8)
	Providers' control	“It’s not approved. Like it’s not approved that the child won’t get it if you breastfeed. It’s not approved by the FDA or the doctors or any of that for the child to not get HIV if you breastfeed. It’s not a “yes” answer. It’s not a “no” answer. It’s an in-between. It’s an unsure answer […] So they just say ‘no you cannot breastfeed.’” (Participant 8) “I feel when you have the diagnosis of HIV they kind of just steer you away towards not doing a lot of things when it comes to the baby.” (Participant 4) “Well, first of all, they should offer. So, they didn’t offer. They didn’t ask me if I wanted to breastfeed.” (Participant 2)

(1). Attitudes and beliefs

Overall, the feeding preferences of the PLHIV varied with some expressing a personal desire to breastfeed while others stated that they preferred formula feeding. Those who desired to breastfeed were primarily motivated by breastfeeding being considered natural, perception that breastfeeding is better for infant health, and desire for the bonding experience. Both those who had and those who had not breastfed in the past were among those who expressed a desire to breastfeed. For some PLHIV who desired to breastfeed, their preference was reinforced by perceived negative aspects of formula feeding. Frequent formula-related concerns included: potential for formula intolerance, unknown ingredients and chemicals, inferior nutrition, and loss of health benefits that are incurred with human breastmilk. The potential for formula shortages was also mentioned.

Risk of HIV disclosure was also cited as influencing personal attitudes. While pressure to breastfeed did sometimes come from partners, family, friends, cultural and/or religious beliefs, their child’s well-being and safety were the primary concern of PLHIV and their choice to formula feed was for many driven by the belief that the risk of HIV transmission to the infant through breastfeeding was high. For example Participant 22 stated: “Itś that scary thought that you know, 50/50 that the baby-it can get HIV transmitted through the milk.” Despite the challenges sometimes experienced related to not breastfeeding, all study participants who gave birth while living with HIV expressed confidence that they had made the right decision for themselves and their babies given what they were told at the time about the risks and benefits for breastfeeding while living with HIV.

In addition to being influenced by their concern for HIV transmission to the infant, those who described a preference for formula feeding mentioned perceived risk to the infant of maternal medications, convenience, and perceived good quality and safety of formula. A few participants also mentioned lack of interest and patience to breastfeed, seeing breastfeeding as a sexual stimulation, and the potential for pain with breastfeeding.

(2). Perceived behavioral control

Some PLHIV who had given birth in the U.S. since their HIV diagnosis stressed that “there was no option” for them to decide between the infant feeding choices since they were strongly advised by health providers to formula feed:

“It was like a straight “no.” Like for my situation was like a locked down situation, Íll call it.” (Participant 10)

However, when they did feel that a prohibition against breastfeeding might not apply, they largely expressed that they felt the infant feeding choice was in their control and that their choice was based mainly on their beliefs about what was best, as exemplified by this quote from Participant 4, a U.S.-born woman who was living with HIV at the time of her last pregnancy who felt that her decision to formula-feed was mainly self-directed:

“Let’s put it this way, they were very informative and they talked, we talked throughout the pregnancy but I still did what I wanted to do. But I took their information into consideration. But I still do what I want to do.”

(3). Subjective norms

The social norms referenced by participants could be broadly divided into two reference groups: family/friends or broader community.

Norms of Family and Friends

Family norms related to those attributed to co-parents, as well as to both the mother’s and father’s families of origin. Notably, for the most part in this cohort, PLHIV felt that their own feelings or opinions about infant health/safety were more important than any other familial normative behavior. Regarding their partner’s opinion, some PLHIV explained how their partner accepted and supported their feeding choice without voicing their own opinions. One PLHIV, describing her partner’s approach said that he remarked: “It’s your body. You do what you feel is right.” (Participant 11) Others reported that the father deferred to the mother’s judgments to make the best decision because they did not want to stress the mother with infant feeding conversations and/or because they assumed that they were going to formula feed based on the HIV diagnosis.

“He really didn’t have like no objections to whether I breastfeed or formula fed…Uh, just cause he knew that I would make the best decision and we both knew about the transmission to the baby. So it was a no brainer.” (Participant 17)

For PLHIV who did not live with the child’s other parent, the father’s opinion was often discounted by the awareness that he wouldn’t be physically involved in the newborn’s feeding. Even for some who lived with the father, the expected lack of involvement of men in tasks such as infant feeding contributed to the belief that feeding choices are primarily the domain of women. One mother linked men’s parental role to their ethnic background.

“For us, like Africans in particular, the man, like, they are not so much into it, like, the kid’s life. Some of them are, but most of them they are not…They care for their infant in different ways. Like, however moms feed the baby they’re not really into it. They’re, they’re, I guess they assume that, that she is breastfeeding the baby. How’s the baby eating, yeah that I know that that’s how they think, all of them think that way.” (Participant 19)

When mothers whose co-parent did not express infant feeding preferences were given the hypothetical question about what would have happened if their partners had an opinion regarding the infant feeding choices, some stated that they would have considered their partner’s opinion if they had talked about it. Some reasons given as to why their partner’s opinion did matter were: equal concern regarding child’s safety, the partner’s alignment of shared goals, and the importance the partner has on their child’s life.

“…because he plays as much of the part of his life as I do. So you know I would definitely listen to and hear him out.” (Participant 2)

In contrast, some other PLHIV stated that their partner’s opinions regarding infant feeding choices didn’t matter to them. Their reasons included: their partner’s lack of infant feeding knowledge, lack of responsibility in feeding the baby, not being with the father of the infant or being on bad terms with their partner.

“Its my body… not theirs, so unless yoúre gonna grow some boobs and you know help me…” (Participant 22)

Only a few PLHIV stated that their partner’s opinions were actively considered when making infant feeding decisions. These PLHIV and partners shared an agreement on making the best decision for their infant and established that the child’s safety was the main goal.

“We talked about it and he was like I dońt think it would be safe for you to breastfeed because he knows about my condition.” (Participant 10)

For some participants, their family’s and/or friends’ opinions mattered because their opinions implied concern for the safety of the infant and positive encouragement for PLHIVs decision.

“Well, especially my best friend…We talk about everything. She’s important to me. So like, I know that she’s not gonna tell me anything wrong or suggest anything that’s gonna harm me or my children. So, I really like listen to her. I mean her, her opinion means a lot to me and so does my grandmother.” (Participant 2)

While family or friends sharing their opinions about infant feeding was appreciated by some PLHIV, others reported feeling pressured to breastfeed by friends or relatives, a particular concern associated with formula feeding in communities where breastfeeding is the norm among women without HIV. Some participants had not disclosed their HIV status to anyone other than their health providers. In attempt to mitigate the pressure to conform to the social norm of breastfeeding, some PLHIV who had given birth while living with HIV in the past described preparing false explanations for why they were not breastfeeding. One PLHIV had the experience of breastfeeding a child born before she acquired HIV and had another child after her HIV diagnosis. She explained:

“They asked questions about why I was not breastfeeding since I did do it with my daughter. So, I had to try to make up something.” (Participant 16)

One mother discussed feeling conflicted about explaining to a friend why she was not breastfeeding. Ultimately, the stigma that her friend and other women had around HIV made her avoid disclosing her HIV status.

“Well, she would make comments with other women before, like us with HIV. I, I was gonna tell her the reason I couldn’t breastfeed, but the way she is I couldn’t tell her that it was that way.” (Participant 19)

However, for some PLHIV the opinions of their family members or friends were not important. Those who did not value the opinions of family members and friends regarding infant feeding mentioned a variety of reasons for not relying on those opinions. These included their own sense of autonomy and responsibility for the infant as well as the family member or friend’s lack of knowledge of her HIV status. Some also mentioned that they had more trust in medical advice given from healthcare providers.

“I don’t, I don’t take opinions. At the end of the day itś what I want…Because itś my baby.” (Participant 15)

“It was best with the child. It was best as the healthcare provider, you know, primary care practitioner that was helping me deliver with my child. And whatever they say was best for myself and my child.” (Participant 31)

Broader Community Norms

Even though interviewers asked specifically if PLHIV were impacted by religious or cultural beliefs, in the majority of cases they reported that this was not a major influence. PLHIV often described that nobody from their community gave their opinions. Others shared their indifference towards the thoughts or opinions of their community, saying that medical advice was more influential to them. The few PLHIV who did share cultural and/or religious beliefs regarding formula or breastfeeding, described being encouraged to breastfeed. Of note, all women in this cohort who were born in or grew up in Africa highlighted the cultural importance of breastfeeding in African communities and shared the perceived beneficial properties of breastfeeding.

“They believe breastfeeding is healthy for the child…Yes, that itś the best way to feed the child with your breast, most of them, the African women they breastfeed their kids.” (Participant 18)

Some women who come from communities where breastfeeding is the norm expressed that residing outside of that community made a big difference in their comfort with formula feeding.

“In my village women must breastfeed their babies. They feel is the best food for the babies. So they strongly believe in that… The good thing about it, I wasńt in the village with them when I had my babies.” (Participant 10)

One mother stated that her religion commands women to breastfeed but also explained how this requirement can be misinterpreted by her community. According to her, women should only breastfeed when they are “not sick.” Therefore, although her religion commands breastfeeding for most women, she felt that her HIV status put her in the category of “sick people” for whom breastfeeding would not be religiously advised.

“Some people get it confused. But God would never tell me to breastfeed anyway. Because he’s God, he’s going to protect the child. It doesn’t work that way, no. I’m already sick. I should find cure, if not I should try to protect the, the gift God has given me. I should try to make sure it doesn’t come at me. So to say “God is coming, God will protect the child,” no. But people do think that way, actually.” (Participant 19)

Some PLHIV thought of the broader community of people living with HIV when asked about community norms. They were interested in what other people living with HIV had done and believed. One PLHIV expressed a feeling of responsibility towards the community of people living with HIV in terms of the decisions she made:

“Because my community is gonna do what Ím possibly gonna do.” (Participant 8)

Discussion

Key findings of the current study were that PLHIV in Philadelphia considered their own best judgment for the care of their infant and their personal bodily autonomy to be most influential in their infant feeding decisions. Most relied heavily on advice from healthcare workers to guide their decisions, with healthcare providers consistently recommending against breastfeeding for those who were living with HIV at the time of a prior birth. While healthcare provider opinions were strongly valued, there was considerable diversity in whether a co-parent, other family members, friends and community members, or perceived norms were considered as influential. Among those who gave birth while living with HIV, wanted to breastfeed, and decided not to breastfeed, perceived high risk of HIV transmission to the infant was a driving factor.

Recent changes in infant feeding guidelines in the U.S. reflect the fact that the risk of HIV transmission through breastfeeding is now known to be <1% when the mother or the infant receive antiretrovirals (Abuogi et al., 2024; Flynn et al., 2018), representing a higher degree of safety than believed by our study participants in this primarily pre-guidelines-change period. This study was planned at a time when changes in the U.S. infant feeding guidelines for PLHIV were being considered and data collection spanned the early implementation of the new guidelines (Panel on Treatment of HIV During Pregnancy and Prevention of Perinatal Transmission, 2023; Panel on Treatment of Pregnant Women with HIV Infection and Prevention of Perinatal Transmission, 2021). The desire to breastfeed was commonly expressed, both among those who had and had not experienced breastfeeding in the past. Notably, none of the women who were living with HIV at the time of a prior birth had ultimately make the choice to breastfeed, although several described challenges related to being discouraged from breastfeeding their infants. Among these was often a significant emotional cost. It is also worth highlighting that the women in our U.S.-based study overwhelmingly expressed that they were the ultimate decision-makers when it came to feeding their infants, something that is not always the case in other contexts, where other family members such as grandparents may be empowered to decide (Nyoni et al., 2019; Operto, 2020).

This study provided evidence of the significant value PLHIV in our context gave to healthcare providers’ advice when it came to infant feeding. With increasing numbers of reports demonstrating safety of breastfeeding among PLHIV in high-resource settings who maintain an undetectable viral load on ART (Abuogi et al., 2023; Levison et al., 2023; Yusuf et al., 2022) and current strategies to minimize the perinatal HIV transmission risk (Flynn et al., 2018; Siegfried et al., 2011), health providers are now challenged to present more nuanced messaging that acknowledges that the benefits of breastfeeding may outweigh risks for some mother-infant dyads (Gross et al., 2019). The current U.S. Guidelines for infant feeding among PLHIV recommend collaborative decision-making between health providers and parents (Panel on Treatment of HIV During Pregnancy and Prevention of Perinatal Transmission, 2023). This study can inform implementation of the guidelines by highlighting both the importance of health provider messaging and the diversity of other influences on women’s attitudes, beliefs, and community norms. Together, these factors indicate a need for providers to take the time to carefully assess parents’ values and to communicate areas of uncertainty regarding breastfeeding in PLHIV for parents considering that option.

A strength of this study is that it involved a multiracial cross-section of PLHIV in Philadelphia who had experienced giving birth and feeding one or more infants in the past. Women shared their opinions openly, revealing their often conflicting thoughts. We were not able to collect data on PLHIV who were eligible to participate but did not consent to the study. Therefore, we are unable to say the extent to which our studied population represented the underlying population of PLHIV. Our participants included both locally-born and immigrant women in proportions that are roughly similar to the local clinical populations. However, all participants were English speakers which does not represent the linguistic diversity of our clinic populations in which approximately 10% require interpreters during clinical encounters.

Recruitment required the research coordinators to speak with clinic providers and for those providers to recommend their patients for the study. The providers may have avoided recommending those with less apparent trust in the healthcare system and in research, as well as those with limited English proficiency, which could have biased the finding that participants relied on healthcare provider opinions to make infant feeding decisions. Furthermore, we did not collect the amount of time from their last birthing experience, but note that the fact that they were not selected based on recent birth experiences makes their recollections subject to recall bias. While we believe that we were approaching thematic saturation at the time when interviews ceased, we ideally would have confirmed this with a few additional interviews. Unfortunately, this was not possible due to unavailability of staffing.

Overall, this work emphasizes the common desire for breastfeeding choice that influenced a U.S. guidelines change in 2023. When restricted by national guidelines, most PLHIV in our cohort understood that they had no choice to breastfeed although many wished they could do so. In the absence of legal or institutional barriers, most indicated that they as mothers would have primary control over infant feeding decisions and would rely on guidance from trusted healthcare providers to inform their choices. Indicating nuances of what is known and not known about risks and benefits will require additional time in clinical encounters now that parents affected by HIV are faced with these choices.