Abstract
Background:
Donor milk banks have strict donor screening criteria to ensure that donor milk is safe for premature or hospitalized babies. Yet little evidence is available to understand how potential donors, who are often breastfeeding their own infants, experience being ineligible (“deferred”) to donate their milk to a milk bank.
Materials and Methods:
Interviews were conducted with 10 mothers who were permanently or temporarily deferred from donating to a large, not-for-profit milk bank in Australia. Interviews focused on becoming a donor and being deferred, meanings of deferral, impact of deferral on feeding own infant, and improving the deferral process.
Results:
Thematic analysis of interviews identified nine themes: (1) donation as a solution to wasting milk; (2) eligibility questions were acceptable and understandable; (3) more information early on allows self-deferral; (4) deferral is not always clear; (5) deferral is disappointing but does not prevent future donation; (6) deferral did not prevent feeding own infant; (7) early information enables preparation for donation; (8) slow communication disrupts perfect timing to donate; and (9) alternatives to wasting milk.
Conclusions:
Milk banks have a duty of care to both milk recipients and donors. While mothers who want to donate milk are disappointed by deferrals, clear communication protects their breastfeeding relationships with their own infants. Milk banks can improve their screening processes by providing information up-front and ensuring timely contact with mothers. Mothers can then make informed decisions about donating and not feel as if their milk and resources are “wasted.”
Introduction
Mothers' own milk is the preferred source of nutrition for preterm or low-birth-weight infants. 1 However, mothers of preterm infants may have difficulties producing an adequate milk supply and their infants may need supplemental sources of nutrition, such as (pasteurized) donor human milk from a milk bank. Most milk banks rely on donors to voluntarily supply their milk and this reliance necessitates understanding not only how to effectively recruit donors but also how to retain them to avoid shortages in milk supply. 2
Insufficient number of donors results from several factors, including lack of awareness/knowledge about milk banking, low rates of breastfeeding, time constraints, religious or cultural beliefs, informal milk sharing, and few health professionals encouraging donation.3–5 Compounding this challenge to ongoing donation to milk banks, approximately one-third of mothers who consider or attempt donation are temporarily or permanently ineligible to donate (i.e., deferred) following screening, 6 with maternal medication use the most common reason for deferral. 7
Research with blood donors suggests that temporary or permanent deferral may have unintended consequences. 8 Those willing to donate but who are deferred may experience negative emotional responses. These negative feelings may reduce their willingness to return (if temporarily deferred) and impact their relationship with, and perception of, the collection agency.9–11 Being told they are ineligible to donate may also make donors concerned for their own health. 8 For milk donors, being ineligible to donate may potentially impact their sense of identity and perceived capabilities as a mother. 12 Deferral may potentially also harm the breastfeeding relationship if the mother is unable to reconcile that their own milk is the best option for their infant despite being ineligible to donate to a milk bank. However, no studies have included the experience of mothers being temporarily or permanently ineligible to donate milk as a central focus. 13
To address this knowledge gap, the aim of this study was to interview milk bank donors about their experiences of deferral. The following perspectives were explored: donor's reasons for donating and how they feel about their deferral, what it means to receive a deferral, how the deferral impacts their attitudes toward donating milk and breastfeeding their own child, and their perspectives on how the donor screening process could be improved.
Materials and Methods
Study interviews were conducted with mothers who wanted to become, or were, donors to a not-for-profit human milk bank associated with the blood collection agency in Australia. This milk bank began recruiting donors in July 2018, after it was identified that the majority of very preterm infants in Australia did not have access to pasteurized donor human milk. At the time, study interviews were conducted (November 2020 to August 2021), the milk bank used home or hospital visits to collect nonremunerated donations from mothers with more milk than their own infant needed, located in metropolitan areas in two Australian states: New South Wales and South Australia. The donor screening process has been previously described. 14
An interview topic guide was created to ensure that areas of interest were covered. Four broad topics were explored with corresponding questions (Table 1). Before study commencement, ethics approval was granted by Lifeblood and University of Queensland Human Research Ethics Committee Boards (2019#22; 20190003097/2019#22).
Interview Topic Guide
Mothers who completed an expression of interest to donate milk and were ineligible to donate after screening, and actual donors who were subsequently deferred were invited through email or telephone to participate in the study. Specifically, 107 women received an email invitation, which was opened by 51 women (56 unread). Seven women provided contact details, and five of these were contactable and interviewed (10% response). Since email recruitment appeared ineffective, a further six women were contacted through telephone and five of these women participated (83% response). Overall, 12 women provided their contact details and 10 were able to be contacted to arrange a telephone interview (overall 18% response [10/57] excluding unopened email invitations). An author unaffiliated with the milk bank contacted participants and obtained informed consent before starting each telephone interview.
Data analysis
Ten participants who were temporarily or permanently ineligible to donate breast milk were interviewed. Interview length was on average 20 minutes. Interviews were recorded, transcribed verbatim, and quality checked against the audio. Transcripts were analyzed by two authors using thematic analysis. Specifically, two authors open-coded the transcripts separately and then came together to agree on the codes. Any differences in interpretation were resolved through discussion. Following coding, the two authors worked together to organize codes into higher-level themes, which were either derived from the data or the research questions.
Results
Participants were 26–40 years of age and lived in New South Wales (50%) or South Australia (50%). All had singleton births, and 60% had one or two other children who were not receiving breast milk (40% had no other children). Five participants had donated and were interviewed after temporary deferral. Temporary deferrals were for alcohol or medication (e.g., antihistamine) use, temporarily not having the volume required to donate, illness, or medical procedure. A further five had not donated as they were permanently ineligible due to medication use (e.g., Nifedipine), or being unable to supply the volume of milk required/their infant needing their milk.
Findings are organized into four main areas of interest, which were established a priori from the research questions: becoming a donor and being deferred; what it means to be deferred; impact of deferral on feeding own infant; and improving the deferral process. Analysis yielded nine themes: (1) donation as a solution to wasting milk; (2) eligibility questions were acceptable and understandable; (3) more information early on allows self-deferral; (4) deferral is not always clear; (5) deferral is disappointing but does not prevent future donation; (6) deferral did not prevent feeding own infant; (7) early information enables preparation for donation; (8) slow communication disrupts perfect timing to donate; and (9) alternatives to wasting milk. Descriptions of themes and exemplar quotes are included, with quotes identified by interview number (e.g., Int1).
Becoming a donor and being deferred
Theme 1. Donation as a solution to wasting milk
The central reason participants started donating was because they did not want to discard their excess milk. Participants self-identified that they had an oversupply of milk, and believed their milk was valuable. Donation was a solution that allowed their milk to be used rather than thrown away.
“There was so much of it and it was starting to get close to the three months mark, where even if I had wanted to use it, there was still so much that I wouldn't have been able to get through it all. So, I was very happy for it to be used. Otherwise, it would have just been chucked out, and sometimes, to be honest, I will have to throw it out, which I feel awful about, because I would have much preferred it had gone to babies that needed it.” Int6
In addition to avoiding wasting milk, some participants discussed secondary reasons for donating, including upstream reciprocity 15 (their own baby needed donated milk so by donating themselves they were “paying it forward”), wanting to help others, and feeling a personal connection to the cause (as a mother wanting to help other babies).
“I did a bit of a search and I noticed that somewhere was written that it can be donated to the babies with cancer. That actually motivated me—and then I fill the form on that day.” Int1
Theme 2. Eligibility questions were acceptable and understandable
When asked how they felt about the eligibility questions to donate, all indicated they were comfortable with the questions and did not mind being asked. Participants' comfort with questioning and the deferral process more broadly was likely due to their familiarity with blood donation. Eight of 10 participants mentioned they had donated blood or knew about blood donation and screening. As such, they were familiar with the questions asked and made the connection that these questions protected the recipient of their milk.
“They were fine. They're obviously directed to certain things, which is fine. You need to make sure that you're getting the right product, from the right people.” Int6
Also given their familiarity with blood donation, participants expressed trust in the collection organization.
“I did a Google, and then, I think being the Red Cross, I'm like, oh, I trust it. I know there's a couple of others [milk banks], but I've donated blood before, so I trust that it's a good system.” Int7
Participants also appeared to accept the questions because they were aware that their donation was going to infants who were medically fragile or acutely unwell.
“My understanding is that it goes to usually premature babies that are in NICU in hospitals, where their mums might not be able to express enough milk at that stage, and also because they are vulnerable, they can't really tolerate formula as well as an older baby or full-term baby.” Int10
Theme 3. More information early on enables self-deferral
Some participants perceived that had there been more detailed information available on the organization's website, such as how to store milk, when to donate, and which activities could make them ineligible, they may have been able to self-defer or determine earlier on if their milk was suitable for donation.
“I thought that the website to find out your eligibility was pretty poor. If they had listed things I would have just not filled it out…They said not everyone is eligible to donate, but someone will give you a call to find out if you are. Whereas if they had said—do you have HIV, do you have hepatitis? If they'd said these things will preclude you from donating milk, and then they said and if you're taking other medication such as…Then I would have thought Nifedipine which is what I'm on.” Int2
What it means to be deferred
Theme 4. Deferral is not always clear
Participants' awareness of deferral varied. Some who had familiarity with blood donation suspected that they may be deferred and so were proactive in asking staff questions and drawing their attention to possible reasons for deferral.
“When the lady rang me to say you can donate, and then she said I just have to ask some questions. I said well I'll probably be off the list with this medication.” Int2
Others appeared not to know they had received a deferral until they were invited to participate in this study.
“I've got a blood disorder, I wasn't sure. So I did still collect, and when the lady came out, I went into further detail with her about it. She still took my milk…As far as I know [they used the milk].” Int9
Theme 5. Deferral is disappointing but does not prevent future donation
In terms of responses to their deferral, two participants were disappointed that they could not donate.
“Really disappointed. Bit of a tear in the corner of the eye. Kind of like, “oh, I thought I was doing this great thing.” I said to my husband, “now I've got three liters of useless milk in the deep freeze”… I completely understand that it wasn't appropriate to donate it and I wouldn't want to put any one at risk or anything…it was just disappointing.” Int5
However, disappointment did not mean that temporarily deferred participants would not donate in future. The decision to make another donation depended on factors such as timing (e.g., returning to work) and whether they had enough milk available.
“I just get all the leftover from overnight feeds. But now she's not feeding as much overnight, so I'm not pumping as much. I'm not sure if I'll have enough for another batch.” Int7
Impact of deferral on decisions to feed their own infant
Theme 6. Deferral did not impact feeding own infant
Being ineligible to donate did not appear to impact participants' decisions to continue feeding their own infant. Most participants believed and understood that their milk was suitable for their own baby but not for donation to a medically fragile infant. Participants mentioned they knew this from job-related or personal experience of having a premature baby or they were informed by milk bank staff.
“It was explained really well in terms of any medication I'm on is fine for my baby, but not for vulnerable babies down in NICU. That was explained really well that you know the reasoning behind the eligibility block and what that meant.” Int4
Participants who believed their milk was safe for their own baby also spoke of how they had their own systems in place to ensure safety, which included advice from their general practitioner and phone apps recommended by mother's groups and health professionals (e.g., tracking alcohol consumption).
One participant did not understand why her milk was safe for her baby but not for donation, however, she did not ask questions of milk bank staff.
“I did think that maybe I would be able to, because I'm breastfeeding my baby on that medication. I thought oh that's a bit unusual that I can feed my baby but I can't donate it.” Int2
Perspectives on how the deferral process could be improved
Theme 7. Early information enables preparation for donation
Participants indicated that if they had greater awareness of milk banking and donation earlier on, and its requirements, then they could prepare more effectively to donate.
“This has not been really publicized or advertised, the milk donation thing, as it should be in the hospital, you know leaflet or something.” Int1
“The thing I found really challenging about the website was that it didn't tell you – I wanted to make sure that I was storing the milk the right way before I went and stored two liters of it the wrong way, but it seems like you can't fill out the form until you've got two liters which, like, now I'm in the routine isn't that much but gee, it seems like a big benchmark to start with, so, like, I thought, “2 liters!,” you know?” Int5
Theme 8. Slow communication disrupts perfect timing to donate
Delays in communication from the milk bank interfered with the window of time in which participants had excess milk to donate and increased the chances that their milk would be discarded. In some cases, delayed communication meant that participants no longer had milk available to donate because their supply had changed or their milk had exceeded the storage time for donation. For other participants, delays in communication from the milk bank meant that they wasted time or resources preparing for donation such as sourcing blood tests, investing in extra freezers, or purchasing storage bags, only to find they were ineligible to donate.
“It did take a while from the time I did my form [to register interest in donating], it was a few weeks until they were able to get back in touch with me. So my situation changed a bit in that time.” Int3
“They said they would send me some sterile bags, which I'd actually already gone and bought some, so it was lovely to hear that they send them because they are quite expensive…I didn't realize they would provide them.” Int5
Theme 9. Alternatives to wasting milk
In circumstances where women may have prepared to donate by expressing and storing additional milk before determining their eligibility, some participants wanted ideas about an alternative use for their milk (e.g., using it in infant's bath). Others appeared open to the idea of their milk being used for product research, which still ultimately helped infants needing milk.
“If there's any doubt [of the suitability of the milk], then I'm happy for the milk to be used for research. If you don't want to use it for donation, I can understand.” Int6
Discussion
Milk banks have been established globally, primarily to distribute donor human milk to preterm and low birthweight infants in hospital. Because of the vulnerability of infants that milk banks serve, they often have rigorous donor screening criteria to ensure recipient safety. However, most milk donors are themselves parents, and milk banks have a responsibility to not inadvertently harm a donor's breastfeeding relationship with their own infant. Appropriately balancing these two responsibilities is key and should inform milk bank communication strategies. While there is knowledge about ineligibility/deferral from blood donor studies, it is not well understood how milk donors feel about being ineligible, or deferred from milk banks.
As with blood donation deferral, 8 deferral from donating to a milk bank can be disappointing. If women are aware that they are deferred and they understand why, they can reconcile this information and feel comfortable to continue feeding their own infant. Communicating this information effectively is particularly critical in the case of medication use, which was a common reason for deferral in our study, and in milk bank collection more broadly. 7 Milk donor coordinators who speak to donors have counseling scripts for common conditions associated with deferral, designed to reassure donors that their own milk remains the best feeding option for their own infant. Participants understood that milk would be fed to preterm or ill infants who might have different needs than their own infants, however, were disappointed that their efforts to make the most of excess breast milk, perceived as a precious resource, would not be used to help other infants.
Communicating ineligibility to women quickly and efficiently, or providing more information about eligibility and storage criteria on websites, would help to avoid the investment of time and resources by women who are willing but likely to be unable to donate.
Women's lack of knowledge about milk banking and lack of encouragement from health professionals have previously been identified as barriers to donation to milk banks.5,13 Our participants also identified that more information about milk banking and eligibility provided early on in contexts that mothers access (e.g., hospitals, medical professionals, prenatal classes) would increase awareness and lead to greater efficiencies in the screening process for donors and milk bank staff. Most milk banks consistently defer donors for medical conditions, such as HIV and hepatitis or activities such as smoking and intravenous drug use. 16 However, many other milk donor deferrals, such as those applied for medication or nutritional supplement use, are precautionary due to a lack of studies to inform risk. Information about nutritional supplements and medications that will result in a deferral needs to be distributed in formats that allow regular updating (e.g., online). 16
Milk donation is a time- and resource-intensive process and women have often been expressing milk for weeks before attempting to donate. Milk banks can help deferred/ineligible donors feel their milk is not “wasted” by giving alternative uses for stored but ineligible milk. Sometimes this milk can be collected by the bank for other purposes, such as research. However, the volume of milk required for research is often much smaller than what deferred donors have stored and so this is not a viable strategy in all cases. Some milk banks (e.g., Hearts Milk Bank) accept milk from donors who are ineligible to donate for vulnerable infants for distribution to healthy infants in the community who are unable to access maternal milk, such as infants whose mothers have cancer. 17 Our milk bank donor coordinators provide information about alternative donation options (e.g., peer-sharing groups) or uses for stored breast milk. For example, some mothers like to add milk to their infant's baths or directly to infant's skin as a moisturizer or for skin conditions, 18 or use it to make smoothies or cereal/porridge for older infants/children.
These findings contribute to the knowledge of how deferral is understood, and experienced, by (potential) milk bank donors. A limitation of our study is that many participants were familiar and comfortable with screening questions asked and the deferral process, due to prior blood donation experience. As such, our findings do not give insight into the perceptions of people who may not be familiar with donation or understand the purpose of eligibility questions. It is possible that some women may view the questions not as standard but as intrusive and respond negatively, with implications for their emotional wellbeing. Future research is needed to investigate this. Although donors interviewed reflect the most common reasons for deferral at our milk bank, our initial method of email recruitment was ineffective (perhaps particularly so during COVID-19), and generalizability of our results is therefore unknown. Furthermore, due to the small sample size, thematic saturation may not have been reached. Research is needed to understand donor perspectives that may not have been captured in this study.
Conclusions
Milk banks have a duty of care to milk recipients and donors. While mothers who want to donate milk are disappointed by deferrals, clear communication protects their breastfeeding relationships with their own infants. Milk banks can improve screening processes by providing information up-front and ensuring timely contact with mothers, as well as providing support for mothers to find purposeful uses for their stored milk if it cannot be accepted by the milk bank. Mothers can then make informed decisions about donating and not feel as if their milk/resources are “wasted.”
Footnotes
Acknowledgments
The authors acknowledge Lauren Chaberka for assistance with recruitment for the project, and Chris Sulfaro for advice and assistance given to support project conduct.
Authors' Contributions
M.K.H.: Conceptualization (equal); formal analysis—(equal lead); methodology (equal); project administration (equal); writing—original draft (equal lead); and writing—review and editing (equal lead). R.T.: Conceptualization (equal); formal analysis (equal lead); investigation (lead); project administration (equal); writing—original draft (equal lead); and writing—review and editing (equal lead). B.M.M.: Conceptualization (equal); funding acquisition; writing—original draft (equal lead); and writing—review and editing (supporting). S.P.K.: investigation (supporting); formal analysis (supporting); project administration (equal). L.H.A.: Investigation (supporting); writing—original draft (supporting); and writing—review and editing (supporting). R.B.: Conceptualization (supporting); and writing—review and editing (supporting). V.C.: Conceptualization (supporting); and writing—review and editing (supporting). L.D.K.: Conceptualization (equal); investigation (supporting); project administration (equal); writing—original draft (equal lead); and writing—review and editing (supporting).
Disclosure Statement
R.T., B.M.M., S.P.K., R.B., V.C., and L.D.K. are current or former employees of Australian Red Cross Lifeblood, which provides pasteurized donor human milk to hospitals in Australia. The authors do not have any other conflicts of interest to declare.
Funding Information
This work was supported by an award made to Barbara M. Masser from The University of Queensland Vice Chancellor's Strategic Funds. Laura D. Klein received salary funding support from the Baxter International Foundation and the Australian Department of Health. Australian governments fund Australian Red Cross Lifeblood for the provision of blood, blood products, and services to the Australian community.