“Why Is There Not a Doctor that Knows Anything About This Part of My Body?” Patient Perspectives on Chronic Lactation Insufficiency

Abstract

Introduction:

Although exclusive breastfeeding is recommended for the first six months of life, many lactating individuals discontinue due to low milk supply, a condition sometimes referred to as chronic lactation insufficiency (CLI). Affecting an estimated 5–15% of lactating individuals, CLI can stem from both extrinsic factors (e.g., infant feeding challenges) and intrinsic ones (e.g., endocrine or metabolic disorders). This qualitative study explored the lived experiences of individuals with CLI and their interactions with healthcare providers (HCPs).

Methods:

In-depth, semi-structured interviews were conducted with 30 individuals who self-reported experiencing low milk supply, were 18 or older, and were members of the “IGT and Low Milk Supply Support Group” on Facebook, which has approximately 10,700 members. Data were analyzed using phronetic iterative analysis which is a cyclical, reflexive coding approach that emphasizes practical reasoning.

Results:

Participants reported significant challenges, including: (1) not being believed or taken seriously; (2) facing discrepancies between providers that led to fragmented care; and (3) experiencing a lack of knowledge from HCPs, including lactation consultants. Many described actively seeking a diagnosis and meaningful support but instead receiving inconsistent advice and little to no diagnostic insight into their condition.

Conclusions:

These findings highlight the urgent need for improved education and training among HCPs to address the complex realities of CLI. They also point to the importance of advancing personalized approaches to breastfeeding support and expanding research to determine causes and diagnostics for low milk supply. By centering patient voices, this study identifies critical gaps in care and communication that prevent effective support for those navigating CLI.

Introduction

Despite clinical recommendations, only 24.9% of infants in the United States are exclusively breastfed for the first 6 months of life.¹ Insufficient milk supply has been repeatedly cited as the most common reason given by lactating individuals for the discontinuation of breastfeeding before 6 months.^2,3 Because of the lack of diagnostic criteria, this research uses the definition of chronic lactation insufficiency (CLI), which is “the production of less milk than is required to exclusively feed an infant for the duration of the breastfeeding relationship, despite following best practices.”⁴ CLI, also referred to as low milk supply (LMS) in the literature, impacts between 5% and 15% of lactating individuals and is caused by both extrinsic factors, such as suckling challenges, and intrinsic factors, such as endocrine conditions and metabolic disorders.^5–7

The inability to breastfeed due to CLI has been linked to significant stress and can adversely impact a mother’s postpartum mental health.⁸ This is further exacerbated by the uncertainty an individual faces in determining if they are experiencing the perception of LMS, which is “based on a perception of too little breast milk being produced for appropriate infant weight gain and satisfaction” or a physiological issue.⁹ Mothers grieve the breastfeeding relationship that they expected with their infants, and many perceive their inability to breastfeed as a reflection of their mothering abilities.¹⁰

Compounding these psychosocial challenges, women report receiving little information or support from health care providers (HCPs) when navigating their CLI due to the belief and existing evidence indicating it is uncommon.^8,11 Low milk supply is underrepresented or not mentioned at all in the breastfeeding curriculum for HCPs who treat lactating individuals.^12–14 In addition, international board-certified lactation consultants do not have the ability to prescribe medications or run tests necessary to determine the cause of self-reported CLI.¹⁵

This research addresses a critical gap in understanding how HCPs approach CLI, with the potential to reshape patient care and support. By exploring areas for improvement within the health care system, this study seeks to enhance the management of CLI and mitigate the negative impacts of inadequate care on lactating individuals facing this chronic condition. The central research question driving this inquiry is: How do individuals who experience CLI describe their experiences and interactions with HCPs?

Materials and Methods

Design

Phronetic iterative analysis was used for this qualitative investigation. This is a method that focuses on engaging with the data in a cyclical approach, informed by a set of specific questions.¹⁶ Data are coded in first- and second-level cycles, resulting in the development of a codebook that is used to classify data informed by existing theoretical evidence. Phronetic iterative analysis is grounded by: (1) interpretivism, in which the researcher assumes that realities are plural, unique, and constructed through symbolic practices, and (2) symbolic interactionism, which assumes that individuals interpret, share, and create meaning through language and symbols.^17,18 This is an appropriate methodology for the research question because the purpose is to deeply understand how women interpret their experiences with CLI, centering their stories as a site for knowledge that can inform clinical practice and research.

Recruitment and selection

Inclusion criteria included individuals who were 18 or older and self-identified as experiencing CLI when feeding any of their infants. All participants were recruited from the IGT and Low Milk Supply Support Group on Facebook, a private online group with 10,700 members, with permission of leaders from the Low Milk Supply Foundation. To join the online group, each member must answer a series of application questions about their breastfeeding experiences to be considered. More than 80 individuals responded to two rounds of recruitment through Facebook posts, and 30 were purposively selected, representing a variety of experiences. Of participants, 83% (n = 25) were White, 10% (n = 3) were Asian, and 6.7% (n = 2) indicated Other. A total of 20% (n = 6) were Hispanic/Latina. One participant did not show up to the interview and was identified as a nonparticipant. Demographic characteristics are provided in Table 1.

Table 1.

Demographic Characteristics of Study Sample (N = 30)

	n	%
Age
23–27	5	16.7
28–32	8	26.7
33–37	7	23.3
38–42	8	26.7
43 or older	2	6.7
Race
White	25	83.3
Asian	3	10.0
Other	2	6.7
Ethnicity
Hispanic/Latina	6^a	20.0
Non-Hispanic	24	80.0
Education
Some college	2	6.7
Associate’s degree	2	6.7
Bachelor’s degree	8	26.7
Master’s degree	12	40.0
Doctorate	6	20.0
Number of live births
1	15	50.0
2	9	30.0
3+	6	20.0
Annual household income
Less than $50,000	2	6.7
$50,001−75,000	3	10.0
$75,001−100,000	7	23.3
$100,001+	18	60.0
Type of insurance^b
Employer-provided	21	70.0
Government-provided	5	16.7
Self-pay	1	3.3
None	1	3.3

Of the six participants who identified as Hispanic/Latina, five identified as White, and one marked “Other” for their race.

Two participants did not report type of insurance.

Data collection

Interviews were conducted on Zoom between January and October 2023. Length of interviews ranged from 29 minutes to 1 hour and 20 minutes with a mean time of 52 minutes. Semi-structured interviews were used, which is an appropriate methodology for understanding the lived experiences and viewpoints of an individual.¹⁶ Semi-structured interviews permit a more fluid and reflexive process that can include probes into a more specific aspect of the interview, yielding more understanding.¹⁶ Interviews were conducted using a guide informed by the research question and that focused on collecting data about communication, information seeking, social support, and overall experience of CLI.

Data analysis

Recorded interviews were transcribed by research assistants. A phronetic iterative approach to data analysis was utilized.¹⁶ This included the three authors reading the same transcript and meeting to discuss initial impressions. Next, all researchers conducted line-by-line coding on three transcripts and met to develop initial codes. Data were then uploaded into Dedoose Version 9.2.22, a cloud application for managing, analyzing, and presenting qualitative and mixed method research data.¹⁹ All researchers coded two more interviews to ensure coding norms and to refine the codebook, informed by the data and emerging findings regarding communication and experiences with providers. Researchers held regular meetings to reflect on interviews they transcribed and themes that began to emerge. Throughout this process, the team discussed theories relevant to data emerging from the interviews. All researchers wrote memos, added comments to transcripts, and deeply engaged with the data regularly for a period of months.

Results

The results of our study revealed that women experienced significant challenges with HCPs. These included (1) not being believed or taken seriously; (2) facing discrepancies between providers leading to fragmented care; and (3) experiencing a lack of knowledge from HCPs, including lactation consultants.

Theme 1: Not being believed or taken seriously

Many participants described the significant struggle CLI created for them. Women spoke with great frustration and grief about how physically, emotionally, and mentally challenging it was to grapple with their difficulty breastfeeding. As they came to understand that CLI was the problem, women described how difficult it was to “be taken seriously” by their HCPs. Participants in our study shared dismissive interactions from multiple HCPs, including obstetrician gynecologists (OB-GYNs), obstetricians (OBs), primary care providers (PCPs), nurse practitioners, midwives, pediatricians, endocrinologists, and lactation consultants. Women found it challenging for practitioners to acknowledge the reality of their situation or provide actionable feedback when they broached conversation about CLI.

As participants sought help, many encountered what they perceived as discouragement, often in the form of providers recommending formula or suggesting solutions they had already tried. This left some feeling defeated and unwilling to seek further support, while others, frustrated by the lack of meaningful guidance, advocated for themselves in search of answers. Participant 139 recalled that “nobody seemed to care,” including her OB, until her pediatrician finally prescribed medication to help augment her milk supply. Similarly, Participant 138 described how a nurse casually advised her to “just try fenugreek,” prompting her to consider seeking care from a midwife in the future. Another participant, who sought hormone testing, described an interaction with her PCP:

And my PCP… left me in tears because she was like, “Well, just feed your baby formula. I’m not testing these.” So … that’s kind of when I gave up on even trying to build my milk supply when I knew that I could look into it, but there was no hope of my doctor helping. So I … just kind of sought information from wherever I possibly could. Participant 125

Participants also shared that even lactation consultants at times did not take them seriously and seemed to lack specialized knowledge needed to address CLI. For example, Participant 139 shared that after her lactation consultant “didn’t really believe” she was unable to produce milk, she decided to stop seeing her. Echoing this, Participant 116 recalled her lactation consultant telling her, “You’re never going to be able to breastfeed your daughter, so just give up.” This participant was able to find another lactation consultant for her second pregnancy who was not familiar with CLI but expressed a willingness to learn. Because the postpartum period is a significant social and biological transition, women experiencing these breastfeeding challenges expressed feeling vulnerable, and treatment from doctors and lactation consultants had a negative impact on their mental health.

Invalidating responses from HCPs who did not understand why breastfeeding was so important meant that participants felt adrift, looking for information from a variety of sources that would validate the challenge of CLI. For some, this meant trying to find a HCP who could interpret hormone testing, diagnose their condition, or prescribe medications for lactation augmentation. For example, multiple women in this sample sought care from endocrinologists:

She [endocrinologist] tested me for insulin resistance, and I got on metformin, and I think that that’s why I’m doing a little bit better this time, but it really ended up being a doctor that was outside of the child’s care scope that actually took me serious enough to run blood work and stuff. Participant 135

Because participants felt high regard for medical professionals, their providers’ disregard or lack of knowledge regarding the challenge of CLI felt especially cutting. One participant described herself as a “big believer” in modern medicine and expressed her “high respect for medical professionals.” The way her HCP responded to her concerns about CLI became a stand-in for societal standards, and she shared that it became clear to her that her HCP and society thought she should just move on and use formula without understanding how physically and psychologically hard she was working to breastfeed. As participants encountered dismissal of CLI, they summed up their sense that HCPs were not listening to them or their experiences. Participant 128 said it this way, “They don’t trust my knowledge because they trust their training.”

Theme 2: Discrepancies between providers and fragmented care

Another hurdle faced by mothers when searching for answers about their CLI was the feeling that they were being passed from one provider to another and receiving inconsistent advice. Participants in this study sample often sought care from multiple HCPs during their experience. With no provider truly owning the issue of CLI, individuals were left feeling bounced around with their questions unanswered, contributing to disappointment and grief associated with the inability to breastfeed. Participant 113 described this phenomenon as a big game of “kick the patient.” She was bounced from her OB-GYN to a lactation consultant and then to her pediatrician, who agreed to run tests. She recalled that her “pediatrician was my rock during all of this.”

As women were passed between providers, they also received different, and at times conflicting advice that impacted decision making. Participant 124 described she was told to triple feed by one HCP, which included pumping to increase milk supply. However, this conflicted with advice she had been told “so carefully” by another HCP not to pump. She described her frustration:

I felt like I had to be in crisis mode before I got that information, and I wasn’t really able to absorb it in a way that felt good. I needed it [the information] before so I knew what to do if I hit that fork in the road. Instead, I had already veered off … and then I was like, what do you want me to do?

With discrepancies in advice between HCPs, women were left not knowing who to believe and feeling as if answers were difficult to ascertain due to fragmented advice. Participant 119 shared how she sought support from several lactation consultants and felt like she “got a little tiny bit of advice from each one” but “not enough to form the whole picture of what I needed to be doing.” Participant 115 also described that after talking to three lactation consultants she “didn’t talk to anybody who I really felt like that had some expertise.” Participants supplemented HCP advice with their own to try to fill in gaps. Participant 113 said, “It was my own personal research, but also these health care providers didn’t know either. And so that was frustrating.”

Ultimately, participants sought a diagnosis to validate their experiences. Women described that they wanted direction and evidence-based steps to take so that they could be fully informed in how to proceed on their breastfeeding journey:

I wish somewhere along the way I would have had someone who would say, “Let’s try to diagnose it,” because I’ve never had a diagnosis. I fit some of the markers, you know. I’m not a health care expert, right? So, I fit some of the markers for IGT, but not all of them. So, I wish there…would have been a provider who would have wanted to diagnose it … and just say, “Let’s know what’s going on with your body.” Participant 139

Due to the lack of education and prioritization of this issue, many of the providers seeing these women did not officially diagnose them with CLI or LMS. A diagnosis could have given women greater insight into their bodies and clarified whether they faced physiological barriers to breastfeeding. Ultimately, many of the women interviewed shared the consensus that no HCP “owns” the issue of CLI:

I guess I didn’t even know to bring it up to my OB, and then I haven’t seen my primary care in a long time, and then you talk [about] it to your lactation consultant, but they can’t order tests or do anything for you. So yeah, it is definitely interesting that there’s not one person that really can own the issue. Participant 137

Overall, women expressed a desire for HCPs to provide more guidance, such as through referrals to physicians or lactation consultants with specialized knowledge in CLI. These experiences revealed a landscape of highly fragmented care and unclear recommendations from a variety of HCPs.

Theme 3: Lack of knowledge

In addition to receiving fragmented care due to no one “owning” this issue of CLI, participants struggled to find accurate information to help them achieve their goals, and they held a strong perception that there was low awareness and education about the issue. Individuals often sought support through social media or did their own research to better understand CLI. They also noted that providers seemed to possess a surface-level understanding of breastfeeding and its benefits, but this resulted in one-size-fits-all recommendations that did not help in accurately addressing more complex issues like CLI. For example, Participant 132 shared about her experience with her OB-GYN, “…As much as I love her, she was not very helpful in that area at all. She was like, ‘Just eat more oatmeal.’ I was like, I don’t think oatmeal is going to help me.”

This mismatch in the communication and knowledge between providers and patients was also exemplified by Participant 111, who requested testing from her OB-GYN to check on her prolactin levels. “She [OB] was like, ‘I don’t know anything about prolactin … I don’t think I can order it.’ And she was really reluctant to order it for me.” Participant 111 explained that although her OB-GYN acknowledged she might have insufficient glandular tissue, a known factor in CLI, they appeared indifferent. This participant’s story echoed that of many others who brought research, testing requests, and information to providers in an attempt to advocate for themselves, demonstrate their knowledge, and legitimize their experience.

Participant 113 commented on this lack of knowledge in the medical field, “You know somebody has to know how to fix my body. We have kidney doctors … we have heart doctors. We have brain doctors. Why is there not a doctor that knows anything about this part of my body?” Women shared a sense of exasperation that no one seemed to understand this issue, and Participant 116 summed up the sentiments represented in many of our interviews, “That infuriated me…the lack of knowledge and education that’s out there both for pediatricians and for … OB-GYNs. I just felt like if I would have known … that that was a possibility much younger in my life, then I could have like mentally prepared myself in ways that I didn’t even know I could.”

Participant 137 also echoed this sentiment, “I don’t think I never even knew it was a thing [CLI] before I had my child, and I’m in health care, like why didn’t I know that?” She went on to say how she saw parallels at the societal level between CLI and talking more openly about mental health. She perceived that as people discussed the issue more openly, it could become more accepted and understood. Women noted that the advice they did receive tended to focus more on extrinsic barriers, like tongue tie, or psychological factors, such as being told that success depended on their belief in their ability to breastfeed. For example, Participant 121 described:

But man, it was crazy. And there’s so little support for low milk supply, because people think it’s not real. So they think, well, you’re just not pumping enough. You’re not nursing enough. You’re just not doing it enough, and you’re like, do you have any idea how often I’m doing this? And then it becomes the question, well, is your baby latching properly? Do they have a tongue tie?

Participant 113 shared, “We don’t say if you just try harder, your heart will pump normally. You know, if you just try harder, you won’t have kidney failure.” She advocated for more awareness that women “genuinely have a body part that isn’t working, that it’s not just supply and demand.” This feedback suggests that individuals may be trying to self-diagnose legitimate health issues that remain poorly recognized due to the complex and multifactorial nature of breastfeeding. As both scientific and experiential knowledge in this field continues to grow, it is important to note that all participants actively sought evidence-based information and expressed a strong desire for HCPs to serve as their trusted source of guidance. Participant 139 shared her thoughts about the state of our understanding of CLI, “…Part of me even wonders if all health care workers know that it’s a thing so many women struggle with.”

Discussion

Overall, participants tried to find HCPs who would take their CLI seriously, provide consistent recommendations, and possessed adequate knowledge. Women sought help from multiple types of providers regarding their issues, leading to fragmented advice and inconsistent or no guidance about their condition. In addition, participants struggled to advocate for the reality of their situation with HCPs, often bringing research and asking for testing that could help lead to answers related to their self-identified issues. This struggle to find answers revealed a fundamental tension between women identifying what they perceived to be a real physiological issue and a general lack of awareness or belief from HCPs about CLI. These findings underscore the need to better distinguish between perceived insufficient milk supply—which is the belief that one is not producing enough milk and cited by 50% of individuals as the reason for stopping breastfeeding—and CLI.²⁰ When women’s claims are dismissed as psychological, it not only invalidates their experiences but also hinders scientific inquiry into the biological factors affecting milk production.

The issues described by women may reflect that HCPs who work with lactating individuals do not receive sufficient training to be experts on specific breastfeeding issues such as CLI.^12–14 The scientific evidence in this area is in dire need of expansion, particularly in delineating between extrinsic and intrinsic factors that may influence the ability to produce milk.^4,5,7 Although participants in this study received advice from HCPs about issues such as tongue tie, other potential causes of CLI, such as metabolic issues, went largely unaddressed, and participants struggled to find HCPs willing to perform or interpret hormone testing. In addition, because there are no clear diagnostic criteria for CLI, HCPs do not have clear steps on what to do if a patient indicates they believe they are experiencing supply issues. This creates a situation in which HCPs cannot communicate effectively about diagnosis or treatment, resulting in the frustration many participants expressed in this study.

Ultimately, individuals expressed that they wanted HCPs to simply be aware of CLI, validate that their experience was real, and provide recommendations for further testing or diagnosis. It is important to note that our study sample primarily included insured and highly educated women—groups with greater access to resources and support, many of whom had the financial means to seek care from multiple HCPs. If these women face difficulty navigating CLI, it is likely that underinsured and less resourced populations encounter even greater challenges. Many also expressed a desire that the medical field create a specialty in breast health echoing Dr. Rouw’s recent call that, “establishing breastfeeding as a subspecialty with relevance to many of the main medical specialties would emphasize the value of a basic understanding of Breastfeeding Medicine for all (future) physicians.”²¹ Indeed, participants were frustrated with ambiguity regarding which specialty—OB-GYN, primary care, pediatrics, or endocrinology—had the authority to prescribe or interpret test results meaningfully. In addition, they sought information outside of their HCPs in a desperate attempt to determine what was wrong. In general, participants in this study found their interactions with all HCPs insufficient in addressing specific concerns related to CLI.

Conclusions

By centering the voices of individuals experiencing CLI, it is possible to better identify gaps in health care services and the communication between patients and their HCPs. Effective communication in this context is often hindered by a lack of evidence-based education for HCPs that addresses both intrinsic and extrinsic barriers to breastfeeding. Bridging this gap requires collaboration between patients and HCPs to advance research and practice in this area. Providing clearer education and guidelines for HCPs on CLI would enhance patient-centered treatment and drive the expansion of breastfeeding medicine. Participants in this study already envisioned a future where personalized breastfeeding care is the norm, presenting a valuable opportunity to foster a bidirectional conversation about turning that vision into reality.

Footnotes

Acknowledgments

The authors would like to acknowledge the women who took the time to share their stories and experiences. They would also like to acknowledge our research assistants who provided valuable assistance in cleaning data including Paloma Atilano, Emily Patmore, Nathan Richardson, and Audrey Wojtowicz.

Authors’ Contributions

S.F.S.: Conceptualized and designed the study, conducted all participant interviews, led data analysis, co-drafted the initial article, and reviewed and approved the final submission. J.S.: Contributed to data analysis, co-drafted the initial article, and reviewed and approved the final submission. I.J.: Contributed to data analysis, co-drafted the initial article, and reviewed and approved the final submission.

Ethical Approval

The Institutional Review Board at Butler University provided approval for the study.

Disclosure Statement

No conflicts of interest to disclose.

Funding Information

No funding information to disclose.

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