Breastfeeding support for women with HIV: lactation consultant HIV-knowledge, attitudes, stigma, and tele-lactation experiences

Abstract

Objective(s):

To characterize lactation consultants’ (LCs) HIV-related knowledge, attitudes, stigma, and tele-lactation experience relevant to supporting pregnant and postpartum people with HIV (PP-PWH).

Design:

Cross-sectional mixed-methods study of lactation consultants.

Methods:

We conducted a mixed-methods survey of certified LCs in the United States and Canada. Quantitative measures assessed general HIV knowledge, HIV breastfeeding-specific knowledge, attitudes toward breastfeeding among PP-PWH, HIV-related stigma, and tele-lactation experience using validated instruments. Multivariable regression models examined associations between provider characteristics, knowledge, stigma, and attitudes. Qualitative free-text responses were analyzed thematically using the Health Stigma and Discrimination Framework, with findings integrated to contextualize quantitative results.

Results:

The sample included 207 internationally certified LCs, most of whom reported no or limited clinical experience supporting PP-PWH. General HIV knowledge was high, while HIV-specific breastfeeding knowledge was moderate. Higher HIV-specific knowledge was independently associated with prior experience supporting PP-PWH and awareness of updated infant-feeding recommendations, whereas years in practice and general HIV knowledge were not. HIV-related stigma levels were generally low; lower stigma was associated with greater support for patient autonomy but more cautious endorsement of breastfeeding in high-resource settings. Tele-lactation experience was common. Qualitative findings emphasized strong support for patient autonomy and nonjudgmental, informed counseling, alongside high willingness to learn and engage in additional training to better support PP-PWH.

Conclusions:

LCs are motivated to support PP-PWH but face HIV-specific knowledge gaps and structural challenges shaping preparedness and counseling practices. Targeted education, clear guidance, and integration of tele-lactation within HIV care systems may strengthen equitable, person-centered lactation support.

Introduction

Infant feeding guidelines for pregnant and postpartum people with HIV (PP-PWH) have recently changed in the United States, shifting from strict recommendations against breastfeeding/chestfeeding (BF/CF) to a shared decision-making model that supports BF/CF when clinically appropriate and desired [1,2]. Lactation consultants (LCs) play a key role in helping parents navigate the clinical and practical challenges of infant feeding, and their support is associated with increased confidence in BF/CF [1,3]. LC support is particularly valuable in complex or chronic conditions, including HIV [3–5].

In the United States, approximately 3500 people with HIV give birth each year, though this estimate likely underrepresents the true number due to underdiagnosis and reporting limitations [6]. Care providers and ancillary infant feeding support team members, like LCs, may not be aware of updated guidelines or lack the HIV-specific knowledge required to support PP-PWH [1,7,8]. Accurate, current training is essential, as common lactation issues may carry increased risk or different clinical implications for PP-PWH [1,9]. With targeted education, LCs can provide specialized care, including via telehealth, to support vulnerable lactating populations [5,10–12]. In the general U.S. population, access to LCs is constrained by workforce shortages, geographic maldistribution, and variability in insurance reimbursement [10,13–15].

Although in-person LC care remains common, barriers like provider shortages, geographic isolation, and time constraints have prompted interest in tele-lactation; real-time lactation support delivered via secure telehealth platforms. Tele-lactation availability expanded during the COVID-19 pandemic, though access and uptake remain variable across regions and health systems [13,16]. The tele-lactation model has been associated with increased exclusive BF/CF rates, reduced early cessation, and high user satisfaction, as summarized in a systematic review of primary care-based telehealth models [10,14,17]. Tele-lactation expands high-quality services to underserved regions, particularly for clinically complex and marginalized populations [16,18–20]. For PP-PWH, it may offer additional support in addressing both medical and psychosocial barriers, including stigma and discrimination [21,22]. However, the extent to which LCs have experience providing tele-lactation in the context of HIV-related infant feeding has not been well described.

Using a mixed-methods approach, the present study aimed to characterize LCs’ general HIV knowledge, HIV BF/CF-specific knowledge, attitudes toward supporting BF/CF among PP-PWH, and tele-lactation experience.

Methods

Study design

This descriptive cross-sectional survey used an embedded parallel mixed-method design, with quantitative and qualitative data collected concurrently and analyzed in parallel [23]. The survey was administered via REDCap [24] from February 23, 2024, to May 3, 2024, following approval from the Committee for the Protection of Human Subjects at The University of Texas Health Science Center at Houston. The institutional review board reviewed the study and a waiver of consent was granted.

Participants

Eligible participants were certified as LCs or counselors for at least one year, had at least two years of experience supporting lactating clients (not limited to HIV-related care). Participants varied in their prior experience supporting pregnant or postpartum people with HIV, which was examined as a key grouping variable in quantitative analyses. Participants were 18 years or older, fluent in English and working in Canada or the United States and were recruited through multiple lactation support networks and professional platforms, including the International Lactation Consultant Association and Canadian Lactation Consultant Association, La Leche League, the African American Breastfeeding Network, state and provincial BF/CF organizations, as well as LinkedIn and Instagram professional profiles. Participants were informed that the survey was anonymous, required approximately 20 min, and did not collect protected health information. Participants were compensated with a gift card.

Survey instruments

The survey assessed participants’ knowledge, attitudes, and experiences related to HIV, BF/CF, telehealth experience, and HIV-related stigma in maternal and infant care. It included both closed- and open-ended questions. Items were drawn from or adapted from validated tools, including: The HIV Knowledge Questionnaire [25], the Telehealth Usability Questionnaire [26], and the HIV Healthcare Provider Stigma Scale [27], which was adapted for maternal-infant HIV care and lactation contexts. Notably, higher scores on the adapted HIV-related stigma scale indicate lower levels of stigma.

To assess participants’ knowledge of BF/CF in the context of HIV, a team of clinical and research experts in lactation, pediatric and maternal HIV care, and public health developed a 21-point HIV breastfeeding knowledge scale (Supplemental Digital Content). The scale consisted of 10 multiple-choice items, with selected items weighted to reflect clinical complexity, yielding a total possible score of 21.

Internal consistency of the multiitem scales was assessed in this sample using Cronbach's alpha. The general HIV knowledge scale demonstrated low internal consistency (α = 0.42), consistent with limited score variability in this highly knowledgeable cohort. The HIV-specific BF/CF knowledge scale demonstrated acceptable internal consistency (α = 0.76), and the adapted HIV-related stigma scale demonstrated moderate internal consistency (α = 0.65).

Attitudes toward BF/CF among PP-PWH were assessed using a Likert-type item evaluating agreement with the statement that people with HIV should not breastfeed when formula and clean water are available. Support for patient autonomy in infant-feeding decision-making was measured using a 10-point scale, with higher scores indicating greater support for patient choice. For analytic purposes, autonomy support was examined both as a continuous variable and as a dichotomous outcome in sensitivity analyses.

Open-ended questions invited participants to describe their perspectives and experiences related to supporting BF/CF among PP-PWH, including perceived roles, concerns, and training needs.

Quantitative analysis

Quantitative data analysis was conducted using R (R version 4.0.4) and RStudio (version 2023.09.0+463) [28]. Descriptive statistics were reported as means and standard deviations for continuous variables and frequencies with percentages for categorical variables. Quantitative analyses were conducted using regression-based models appropriate to outcome distributions. Continuous outcomes were analyzed using linear regression models, and dichotomous outcomes were analyzed using logistic regression models to estimate odds ratios (ORs) and 95% confidence intervals (CIs).

Support for patient autonomy in infant-feeding decision-making was examined both as a continuous outcome using linear regression and as a dichotomous outcome using logistic regression in sensitivity analyses, due to clustering at higher values on the scale. Multivariable regression models were constructed for each outcome to estimate independent associations while adjusting for relevant provider characteristics, including prior experience supporting pregnant or postpartum people with HIV, awareness of updated infant-feeding recommendations, and other professional factors. To reduce the risk of type I error in exploratory analyses, false discovery rate (FDR) correction was applied using the Benjamini–Hochberg procedure [29].

Qualitative analysis

We conducted a thematic analysis of free-text responses to explore participants’ attitudes and experiences related to supporting BF/CF among pregnant and postpartum people with HIV (PP-PWH) [30]. Qualitative coding was guided by an a priori theoretical framework related to HIV stigma and shared decision making, specifically the Health Stigma and Discrimination Framework [31]. The framework was used to inform the development of the initial coding structure and to sensitize the analytic team to relevant domains during coding. Coding was conducted iteratively, allowing for the identification of new themes and subthemes that emerged from the data and were not fully captured by the initial framework.

Textual data were uploaded into MAXQDA for coding and theme development. A structured, team-based approach was used, informed by the FORT-CAST framework [32]. Themes were developed through iterative, team-based coding and reviewed by clinicians and researchers with expertise in maternal and pediatric HIV care to enhance rigor and credibility [33].

Results

Demographics

The sample of LCs (N = 207) included in this study (Table 1) was predominantly female (98.6%, n = 204), non-Hispanic White (64.3%, n = 133), Black (8.2%, n = 17), Hispanic/Latino (5.3%, n = 11), and was aged 36–50 years (48.3%; n = 100). In the past two years, only 24.6% (n = 51) had supported at least one PP-PWH. Experience with telehealth was common in our sample of LCs, with 95.7% (n = 198) reporting previous experience with tele-lactation.

Table 1.

Demographics, race/ethnicity, and professional characteristics of lactation consultant participants (N = 207).

Characteristic	n (%)
Age
18–35	29 (14.01)
36–50	100 (48.31)
51 or older	78 (37.68)
Country of practice
United States	180 (89.96)
Canada	27 (13.04)
Years of experience as LC
1–5 years	40 (19.32)
6–10 years	48 (23.19)
More than 10 years	119 (57.5)
Primary practice area
Rural	23 (11.11)
Suburban	87 (42.03)
Urban	43 (20.77)
All settings	54 (26.09)
Sex
Female	204 (98.55)
Male	1 (0.48)
Nonbinary	1 (0.48)
Prefer not to answer	1 (0.48)
Race/ethnicity
White	150 (72.46)
Black or African American	17 (8.21)
Asian	7 (3.38)
Hispanic or Latino/a	11 (5.31)
Multiracial	10 (4.83)
Other	6 (2.89)
Prefer not to answer	6 (2.89)
Education level
Pre-bachelor's	29 (14.00)
Bachelor's degree	106 (51.20)
Post-bachelor's (master's or higher)	63 (30.43)
Experience supporting BF in PWH (past 2 years)
No clients with HIV	154 (74.39)
1–5 clients with HIV	51 (24.63)
More than 20 clients with HIV	2 (0.96)
The last time they heard about infant feeding guidelines in PP-PWH in North America  Within the last year  In the past 1–2 years  Over 2 years ago or never heard	132 (63.73) 17 (8.21) 58 (28.01)
Telehealth experience
Yes	198 (95.65)
No	9 (4.34)

Participants could select more than one race/ethnicity. Notably, 133 (64.3%) participants identified as only White and non-Hispanic, highlighting the demographic homogeneity of the sample

Score summary

Overall, participants demonstrated high general HIV knowledge (mean = 9.29, SD = 0.94) [25], moderate HIV-specific breastfeeding knowledge (mean = 10.8, SD = 4.11), and generally low levels of HIV-related stigma (mean = 26.2, SD = 3.21) (where higher stigma scores translate to lower levels of HIV-related stigma) [27].

HIV-specific breastfeeding knowledge

In multivariable linear regression analyses, higher HIV-specific breastfeeding knowledge scores were associated with prior experience supporting pregnant or postpartum people with HIV and with awareness of updated infant-feeding recommendations (Table 2). LCs with prior experience supporting PP-PWH scored, on average, 1.82 points higher on the HIV-specific breastfeeding knowledge scale than those without such experience (β = 1.82, 95% CI 0.55–3.09, P = 0.005). Similarly, consultants who had never heard of or last heard updated infant-feeding recommendations more than two years ago scored, on average, 2.23 points lower than those who had heard the recommendations within the past 2 years (β = −2.23, 95% CI −3.51 to −0.94, P < 0.001).

Table 2.

Multivariable regression results by outcome among lactation consultants (N = 207).

HIV-specific breastfeeding knowledge
Linear regression
Predictor	β (95% CI)	P
aPrior experience supporting PP-PWH (yes vs. no)	1.82 (0.55, 3.09)	0.005
bAware of recommendations >2 years ago or never (vs. ≤2 years)	−2.23 (−3.51, −0.94)	<0.001
cHIV-related stigma (per 1-point increase)	−0.10 (−0.28, 0.08)	0.262
dGeneral HIV knowledge	−0.14 (−0.74, 0.46)	0.646
Age (categorical)	NS	—
Years of LC experience (categorical)	NS	—

eSupport for patient autonomy
Logistic regression
Predictor	OR (95% CI)	P
Prior experience supporting PP-PWH (yes vs. no)	0.68 (0.27, 1.77)	0.413
Aware of recommendations >2 years ago or never (vs. ≤2 years)	0.35 (0.15, 0.80)	0.013
HIV-related stigma (per 1-point increase)	1.14 (1.01, 1.29)	0.04
General HIV knowledge	0.81 (0.51, 1.20)	0.317
Age (categorical)	NS	—
Years of LC experience (categorical)	NS	—

fEndorsement of breastfeeding/chestfeeding in high-resource settings
Logistic regression
Predictor	OR (95% CI)	P
Prior experience supporting PP-PWH (yes vs. no)	1.03 (0.51, 2.08)	0.929
Aware of recommendations >2 years ago or never (vs. ≤2 years)	1.47 (0.72, 3.03)	0.289
HIV-related stigma (per 1-point increase)	0.65 (0.57, 0.73)	<0.001
General HIV knowledge	1.00 (0.72, 1.38)	0.978
Age (categorical)	NS	—
Years of LC experience (categorical)	NS	—

HIV-related stigma
Linear regression
Predictor	β (95% CI)	P
Prior experience supporting PP-PWH (yes vs. no)	0.17 (−0.86, 1.20)	0.744
Aware of recommendations >2 years ago or never (vs. ≤2 years)	−1.63 (−2.66, −0.61)	0.002
General HIV knowledge	0.38 (−0.09, 0.86)	0.114
Age (categorical)	NS	—
Years of LC experience (categorical)	NS	—

Values are adjusted estimates from separate multivariable regression models for each outcome. Linear regression models report beta coefficients (β); logistic regression models report odds ratios (ORs). Statistically significant results (P < 0.05) are shown in bold.

^aPrior experience supporting PP-PWH indicates self-reported clinical experience supporting breastfeeding or chestfeeding among pregnant or postpartum people with HIV (any experience vs. none).

^bAwareness of infant-feeding recommendations reflects awareness of updated infant-feeding guidelines for people with HIV and is coded as >2 years ago or never vs. within the past 2 years.

^cHIV-related stigma was measured using an adapted HIV Healthcare Provider Stigma Scale; higher scores indicate lower levels of stigma.

^dGeneral HIV knowledge reflects a total score on a general HIV knowledge scale (range 0–10), with higher scores indicating greater knowledge.

^eSupport for patient autonomy was measured using agreement with the statement that people with HIV should be able to choose to breastfeed despite residual transmission risk; responses were recorded on a 1–10 scale and dichotomized for analysis (7–10 vs. 1–6).

^fEndorsement of breastfeeding/chestfeeding in high-resource settings was measured using agreement with the statement that women with HIV should not breastfeed when formula and clean water are available.

Age (18–35, 36–50, ≥51 years) and years of lactation consultant experience (1–5, 6–10, ≥10 years) were modeled categorically and are shown as NS when no category reached statistical significance.

In contrast, general HIV knowledge, age, and years of lactation consultant experience were not significantly associated with HIV-specific breastfeeding knowledge scores in adjusted models (Table 2).

Support for patient autonomy in infant-feeding decisions

Support for patient autonomy in infant-feeding decision-making was high overall, with most LCs expressing agreement that people with HIV should be able to choose whether to breastfeed despite residual transmission risk. In multivariable logistic regression analyses, lower levels of HIV-related stigma were associated with greater support for patient autonomy (Table 2). Specifically, for each one-point increase in the stigma score (indicating lower stigma), the odds of supporting patient autonomy increased by 14% (OR = 1.14, 95% CI 1.01–1.29, P = 0.040) (Table 2).

Awareness of updated infant-feeding recommendations and prior experience supporting pregnant or postpartum people with HIV were not significantly associated with autonomy support in adjusted models.

Endorsement of breastfeeding in high-resource settings

Attitudes toward endorsement of BF/CF among pregnant or postpartum people with HIV in high-resource settings were assessed using agreement with the statement, “Women with HIV should not breastfeed when there is formula and clean water available.”

In multivariable logistic regression analyses, HIV-related stigma was significantly associated with endorsement of BF/CF in high-resource settings (Table 2). Specifically, lower levels of HIV-related stigma were associated with lower odds of endorsing BF/CF when formula and clean water were available (OR = 0.65, 95% CI 0.57–0.73, P < 0.001). In adjusted models, endorsement of BF/CF was not significantly associated with general HIV knowledge, prior experience supporting pregnant or postpartum people with HIV, awareness of updated infant-feeding recommendations, age, or years of lactation consultant experience (Table 2).

HIV-related stigma

In multivariable linear regression analyses, awareness of updated infant-feeding recommendations was significantly associated with HIV-related stigma (Table 2). LCs who had never heard of or last heard updated recommendations more than two years ago demonstrated higher levels of HIV-related stigma compared with those who had heard the recommendations within the past two years (β = −1.63, 95% CI −2.66 to −0.61, P = 0.002). No significant associations were observed between stigma and general HIV knowledge, age, years of lactation consultant experience, or prior experience supporting pregnant or postpartum people with HIV (Table 2). Although overall HIV-related stigma levels were low, item-level responses indicated that some LCs endorsed expectations regarding HIV status disclosure to sexual partners or co-parents (Supplemental Table, Supplemental Digital Content).

Tele-lactation experience

Experience with tele-lactation was common among LCs in the sample, with 95.7% (n = 198) reporting prior use of telehealth-based lactation support.

Willingness to learn and training interest

Willingness to learn more about HIV and breastfeeding was high, with 99% (n = 203) of LCs expressing interest in additional education. Most respondents reported greater interest in training opportunities that offered continuing education credit or specialized certification focused on HIV-specific care.

Qualitative results

LCs provided free-text responses on their willingness to support BF/CF among PP-PWH, reflecting on HIV transmission risk, BF/CF benefits, clinical experience, ethics, access to evidence-based knowledge, and institutional support.

Attitudes toward breastfeeding or chestfeeding among people with HIV

Most LCs in our study reported that PP-PWH interested in BF/CF under appropriate medical care should be supported in their decision to BF/CF.

“We should encourage her to get appropriate treatment and make an educated choice, then to support her with her decision.” (age 36–50, 6–10 years’ experience, USA)

Some respondents described personal discomfort with endorsing BF/CF in high-resource settings where formula is readily available or described conditional support based on maternal clinical factors.

“I wouldn’t feel comfortable telling the mother to breastfeed when we have safe water and formula options.” (age 36–50, >10 years’ experience, USA)

Weighing risks and benefits

Many LCs in this sample repeated the view that infant feeding decisions should be based on a careful evaluation of the relative risks and benefits of available options and emphasized the ultimate authority of decision-making to the mother/parent/family.

“I believe it is shared decision making. It is the HCP's [healthcare provider's] job to provide accurate information about the risk and benefits and the parents role to decide what is best for their family.” (age >51, >10 years’ experience, USA)

Though many LCs focused their risk assessment on the inherent risks of HIV transmission, some also stressed the importance of human breastmilk for infants.

“Perhaps the short and long-term benefits of breastfeeding to both infant and maternal health outweighs the very small risk. However, I also believe that parents have the right to make an informed decision and if they feel the risk is too great, we should support them in their decisions.” (age > 51, >10 years’ experience, USA)

HIV stigma and unbiased care

LCs in our sample shared a commitment to approaching BF/CF among PP-PWH without judgment, and shared concerns about the impact of HIV stigma on effective, equitable lactation care for PP-PWH who BF/CF. Respect for client autonomy, even when LCs report that they personally disagree, emerged as a theme.

“This is entirely up to the parent. My opinion doesn’t matter. They need to be provided the risks of doing so (the risks of formula, the risks of not breastfeeding, the risk of HIV transmission) and weigh this against the benefits (for both of them), their personal feelings around feeding their baby and make an informed decision. How I feel is irrelevant.” (age 18–35, 3–5 years’ experience, Canada)

Access to care & telehealth

Some LCs described telehealth as a modality that may facilitate access to lactation support and enhance privacy for PP-PWH.

“A patient may feel like they have more privacy. They can get care easily and confidentially.” (age >51, >10 years’ experience, USA)

Willingness to learn

Several LCs expressed the desire for deeper knowledge on HIV and BF/CF and shared an interest in more guidance, protocols, trainings, and educational materials to provide on-going support to build HIV competencies in the LC workforce.

“I would like more education about HIV and breastfeeding… My training has never outlined techniques to safely breastfeed with HIV.” (age 36–50, 6–10 years’ experience, USA)

Integration of quantitative and qualitative findings

Quantitative and qualitative findings converged in several key areas. As summarized in Table 3, lower HIV-related stigma was associated with greater support for patient autonomy but lower endorsement of BF/CF, a pattern reflected in free-text responses emphasizing education, shared decision making, and respect for patient choice rather than directive counseling. Similarly, guideline awareness and prior clinical experience emerged as central correlates of HIV-specific BF/CF knowledge in multivariable models and were echoed in qualitative calls for clearer guidance, training, and institutional support.

Table 3.

Integration of quantitative and qualitative findings.

Quantitative finding (Table 2)	Qualitative theme	Illustrative quote
Lower HIV-related stigma was associated with greater support for patient autonomy in infant-feeding decisions	Respect for patient autonomy despite perceived risk	“This is entirely up to the parent. My opinion doesn’t matter. They need to be provided the risks of doing so (the risks of formula, the risks of not breastfeeding, the risk of HIV transmission) and weigh this against the benefits (for both of them), their personal feelings around feeding their baby and make an informed decision. How I feel is irrelevant.” (Age 18–35, 3–5 years’ experience, Canada)
Lower HIV-related stigma was associated with lower odds of endorsing breastfeeding in high-resource settings	Support without endorsement	“I wouldn’t feel comfortable telling the mother to breastfeed when we have safe water and formula options.” (Age 36–50, >10 years’ experience, USA)
Awareness of updated infant-feeding recommendations was associated with higher HIV-specific breastfeeding knowledge	Desire for clear guidance and education	“I would like more education about HIV and breastfeeding… My training has never outlined techniques to safely breastfeed with HIV.” (Age 36–50, 6–10 years’ experience, USA)
High overall willingness to learn was observed across the sample	Readiness to build HIV-specific competence	“We should encourage her to get appropriate treatment and make an educated choice, then to support her with her decision.” (Age 36–50, 6–10 years’ experience, USA)

Discussion

This mixed-methods study examined LCs’ knowledge, attitudes, stigma, and willingness to support BF/CF among pregnant and PP-PWH, with particular attention to the role of tele-lactation. Consistent with prior research, participants demonstrated strong commitment to patient-centered care and relatively low overall levels of HIV-related stigma [34,35]. At the same time, the results reveal important gaps in HIV-specific BF/CF knowledge and uneven knowledge of current infant-feeding recommendations, highlighting areas where evolving evidence has not yet been fully translated into practice. Most notably, this study identifies a clear distinction between support for patient autonomy and endorsement of BF/CF, showing that these constructs relate differently to stigma and knowledge of recommendations (Table 4).

Table 4.

Integrated summary of key quantitative associations and interpretive implications.

Predictor / exposure	aStigma direction	Outcome	bOutcome direction	Interpretation	Key statistics
cHIV-related stigma	↓ Stigma	dSupport for patient autonomy (binary)	↑ Autonomy support	Lower levels of stigma were associated with greater support for autonomy	OR = 1.14 (95% CI 1.01–1.29), P = 0.040
HIV-related stigma	↓ Stigma	Support for patient autonomy (continuous)	↑ Autonomy score	Lower levels of stigma were associated with greater support for autonomy when modeled as a continuous outcome	β = 0.15 (95% CI 0.05–0.26), P = 0.004
HIV-related stigma	↓ Stigma	eEndorsement of BF/CF	↓ Endorsement	Lower stigma was associated with lower odds of endorsing BF/CF in high income areas	OR = 0.65 (95% CI 0.57–0.73), P < 0.001
fAwareness of recommendations	—	gHIV-specific breastfeeding knowledge	↑ Knowledge	Being up to date with recommendations was associated with higher HIV-specific breastfeeding knowledge	Reference group
hNo awareness of current recommendations	↑ Stigma	HIV-specific breastfeeding knowledge	↓ Knowledge	Lack of recent recommendation awareness was associated with lower HIV-specific breastfeeding knowledge	β = −2.23 (95% CI −3.51 to −0.94), P < 0.001
No awareness of current recommendations	↑ Stigma	HIV-related stigma	↑ Stigma	Those unaware of updated recommendations demonstrated higher levels of stigma	β = −1.63 (95% CI −2.66 to −0.61), P = 0.002
iPrior HIV clinical experience	—	HIV-specific breastfeeding knowledge	↑ Knowledge	Direct HIV-related clinical experience was associated with higher HIV-specific breastfeeding knowledge	β = 1.82 (95% CI 0.55–3.09), P = 0.005
General HIV knowledge, age, years of lactation consultant experience	—	All outcomes	↔ No association	These variables were not consistently associated with outcomes in adjusted models	All P > 0.05

Arrow key: ↓ Stigma = lower levels of HIV-related stigma (higher stigma scale scores); ↑ Stigma = higher levels of HIV-related stigma (lower stigma scale scores); ↑ = higher levels of the outcome; ↓ = lower levels of the outcome; ↔ = no statistically significant association.

^aStigma direction. Arrows indicate conceptual levels of HIV-related stigma; ↓ Stigma reflects lower levels of stigma (higher stigma scale scores) and ↑ Stigma reflects higher levels of stigma (lower stigma scale scores).

^bOutcome direction. Arrows indicate the direction of association with the outcome: ↑ higher levels of the outcome, ↓ lower levels of the outcome, ↔ no statistically significant association.

^cHIV-related stigma. Measured using an adapted healthcare provider stigma scale; higher scores indicate lower levels of stigma.

^dSupport for patient autonomy. Reflects agreement that people with HIV should be able to choose whether to breastfeed despite residual transmission risk; modeled as both binary and continuous outcomes.

^eEndorsement of breastfeeding/chestfeeding (BF/CF). Reflects willingness to actively recommend breastfeeding or chestfeeding in high-resource settings when formula and clean water are available.

^fAwareness of recommendations. Indicates awareness of updated infant-feeding recommendations for people with HIV within the past 2 years and serves as the reference group.

^gHIV-specific breastfeeding knowledge. Reflects scores on a scale assessing infant-feeding knowledge specific to HIV, distinct from general HIV knowledge.

^hNo awareness of current recommendations. Indicates respondents reporting no awareness or outdated awareness of infant-feeding recommendations (>2 years ago or never).

ⁱPrior HIV clinical experience. Indicates self-reported clinical experience supporting people with HIV in infant-feeding or related care contexts (any experience vs. none).

Additional note. This table synthesizes direction and interpretation of associations from multivariable models reported in earlier tables and is intended to support integration of quantitative and qualitative findings; no additional statistical analyses are presented here.

The role of knowledge and experience in HIV-informed lactation care

Findings from this study indicate that preparedness to support BF/CF among pregnant and postpartum people with HIV is shaped less by general professional tenure and more by knowledge of recommendations and relevant clinical experience. Although LCs demonstrated relatively high general HIV knowledge, general HIV knowledge was not consistently associated with attitudes, stigma, autonomy support, or endorsement of BF/CF. In contrast, HIV-specific BF/CF knowledge was strongly associated with both prior experience supporting PP-PWH and knowledge of current infant-feeding recommendations.

LCs with knowledge of recommendations demonstrated higher HIV-specific BF/CF knowledge and lower HIV-related stigma, whereas those with no or outdated knowledge showed both lower knowledge and higher stigma. Clinical experience further reinforced this relationship. Prior experience supporting PP-PWH was independently associated with higher HIV-specific BF/CF knowledge, whereas neither age nor years of lactation practice were associated. Together, these findings underscore that relevance of experience, rather than seniority, is critical for preparedness and highlight the importance of targeted training that integrates updated recommendations with experiential learning opportunities [35–37].

Distinguishing support for autonomy and endorsement of breastfeeding

A central contribution of this study is the empirical distinction between support for patient autonomy and endorsement of BF/CF in the context of HIV. Although these constructs are often conflated, our findings demonstrate that they are analytically distinct and relate differently to HIV-related stigma. As shown in Table 4, lower stigma was associated with greater support for patient autonomy in infant-feeding decisions, yet with lower odds of endorsing BF/CF in high-resource settings where formula and clean water are available. This pattern suggests that support for autonomy reflects an ethical commitment to informed choice rather than an affirmative recommendation of BF/CF. This distinction aligns with perinatal HIV care frameworks that emphasize shared decision making and avoidance of coercion while acknowledging residual transmission risk [2,38].

Lower endorsement among consultants with lower stigma could be understood as a function of professional risk management, shaped by evolving evidence, institutional norms, and perceived responsibility for clinical outcomes, rather than bias or ambivalence. Prior work similarly describes provider hesitation to recommend practices that remain subject to uncertainty or scrutiny, even in the absence of stigmatizing attitudes [35,39]. Together, these findings indicate that reducing stigma alone is insufficient to increase endorsement. While lower stigma facilitates respect for autonomy, endorsement appears to require additional elements, including knowledge of recommendations, clinical confidence, and institutional support.

Tele-lactation as an enabling structure for HIV-informed lactation care

Tele-lactation emerged as an enabling structure for HIV-informed, patient-centered lactation care, rather than a peripheral modality. Nearly all LCs reported prior telehealth experience and expressed willingness to provide tele-lactation support to pregnant and PP-PWH with appropriate training and institutional support, indicating that implementation barriers relate more to content-specific preparedness than provider acceptance. Tele-lactation may help address uneven distribution of HIV-specific lactation expertise by facilitating access to consultants with relevant experience across geographic and institutional boundaries. Prior research similarly demonstrates that telehealth can extend specialty expertise where local resources are limited [40].

Participants also described tele-lactation as privacy-enhancing and potentially stigma-reducing, aligning with evidence that telehealth can mitigate stigma-related barriers by allowing care in settings perceived as safer and more controlled [11,35,41]. However, tele-lactation should be viewed as a complement to, not a replacement for, HIV-specific training and clear recommendations. Its greatest potential lies in supporting consultation, mentorship, and dissemination of updated recommendations to reinforce consistent, evidence-informed counseling.

Clinical implications, limitations, and future directions

These findings have important implications for HIV-informed lactation care. Viewed through the Health Stigma and Discrimination Framework [31], stigma may operate less through overt negative attitudes than through structural factors. Preparedness to support pregnant and postpartum people with HIV was most strongly associated with knowledge of recommendations and relevant clinical experience, rather than general HIV knowledge. This underscores the need for targeted, HIV-specific lactation training that addresses evolving recommendations, antiretroviral therapy and viral suppression, relative transmission risk via breastmilk, and counseling strategies grounded in shared decision making. Recommendations that use person-centered, nonstigmatizing language may also function as stigma-mitigating tools by legitimizing BF/CF-related discussions and reducing reliance on overly conservative counselling [1,2,34].

The distinction between support for patient autonomy and endorsement of BF/CF has direct clinical relevance, requiring training and institutional policies that clarify professional roles while supporting informed, nonjudgmental counseling. Tele-lactation represents a promising mechanism for operationalizing these goals by extending access to HIV-specific expertise, enhancing privacy, and supporting consistent counseling practices. However, tele-lactation should be embedded within broader systems of care and paired with appropriate training and clear recommendations rather than viewed as a stand-alone solution [11,12].

Several limitations warrant consideration. This study was cross-sectional and therefore cannot establish causal relationships between knowledge of recommendations, stigma, experience, and counseling attitudes. Self-reported measures may also be subject to social desirability bias. Some instruments demonstrated limited or moderate internal consistency, and the HIV-specific breastfeeding knowledge scale requires further validation. The sample was predominantly U.S.-based, and qualitative data were derived from free-text responses rather than in-depth interviews.

Conclusion

In this mixed-methods study, LCs demonstrated strong support for patient autonomy and openness to HIV-informed lactation care, with preparedness shaped by knowledge of recommendations, relevant clinical experience, and professional context. By empirically distinguishing support for autonomy from endorsement of BF/CF, this study shows that reduced stigma does not automatically translate into endorsement, particularly in settings of residual clinical uncertainty. Knowledge of recommendations may mitigate stigma and legitimize BF/CF-related counseling, while tele-lactation offers a promising structure for extending access to HIV-specific expertise. These findings align with existing policy statements from key stakeholders, including the Association of Nurses in AIDS Care [42] and the American Academy of Pediatrics [43], and support ongoing policy and practice discussions related to HIV-informed lactation care.

Acknowledgements

Author Contributions: E.B. led conceptualization and study design, supervised all aspects of the research, directed data interpretation, and drafted the original manuscript. J.M. co-supervised the study and contributed senior clinical oversight. E.B., L.A.B., E.D.L., and J.M. contributed to methodology and development of the HIV-specific breastfeeding knowledge survey and study instruments. M.L. served as study coordinator, led recruitment and data management, conducted descriptive analyses, contributed to qualitative coding, and assisted with manuscript drafting. L.A. and J.V. were primary qualitative coders and contributed to thematic analysis, with J.M. and L.A.B. contributing to qualitative interpretation. Q.Q., H.W., and T.Z. conducted the quantitative statistical analyses and contributed to interpretation and integration of quantitative and qualitative findings. R.T. provided lactation consultant subject-matter expertise and contributed to interpretation and manuscript revision. E.B., J.M., R.T., and L.A.B. contributed substantively to manuscript review and editing. All authors reviewed the manuscript critically for important intellectual content and approved the final version.

Author approvals: I have the right to post this manuscript and confirm that all authors have assented to posting of the manuscript and inclusion as authors.

Funding statement: This work was supported by the Sumner Roy Kates Charitable Trust and the Cizik School of Nursing at UTHealth Houston Dean's Award.

Publication history: This manuscript was previously posted to preprint: bioRxiv: https://doi.org/10.1101/2025.08.05.25333056

Conflicts of interest

The authors have no competing interests to disclose or financial disclosures to declare.