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Peer-to-Peer Milk Donors' and Recipients' Experiences and Perceptions of Donor Milk Banks
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Peer-to-Peer Milk Donors’ and Recipients’ Experiences and Perceptions of Donor Milk Banks Karleen D. Gribble
Correspondence Karleen D Gribble, BRurSc, PhD, School of Nursing and Midwifery, University of Western Sydney, Locked Bag 1797, Penrith NSW 2751, Australia. [email protected]
ABSTRACT
Keywords milk banking wet nursing milk sharing social media
Participants: Ninety-eight milk donors and 41 milk recipients who had donated or received breast milk in an arrangement that was facilitated via the Internet.
Objective: To explore the intersection of peer-to-peer milk sharing and donor milk banks. Methods: A descriptive survey design containing closed and open-ended questions was used to examine women’s perceptions of peer-to-peer milk sharing and milk banking. Closed-ended questions were analyzed using descriptive statistics and conventional qualitative content analysis was used to analyze open-ended responses. Setting: Participants were recruited via the Facebook sites of two online milk-sharing networks (Human Milk 4 Human Babies and Eats on Feet).
Results: One half of donor recipients could not donate to a milk bank because there were no banks local to them or they did not qualify as donors. Other respondents did not donate to a milk bank because they viewed the process as difficult, had philosophical objections to milk banking, or had a philosophical attraction to peer sharing. Most donor respondents felt it was important to know the circumstances of their milk recipients. No recipient respondents had obtained milk from a milk bank; it was recognized that they would not qualify for banked milk or that banked milk was cost prohibitive. Conclusion: Peer-to-peer milk donors and recipients may differ from milk bank donors and recipients in significant ways. Cooperation between milk banks and peer sharing networks could benefit both groups.
JOGNN, 42, 451-461; 2013. DOI: 10.1111/1552-6909.12220 Accepted March 2013
Karleen D. Gribble, BRurSc, PhD, is an adjunct fellow in the School of Nursing and Midwifery, University of Western Sydney, Penrith, Australia.
The author reports no conflict of interest or relevant financial relationships.
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uman milk banks collect and process donations of expressed breast milk and provide the milk to infants in need of human milk through the health system. The first milk banks opened early in the 20th century, however, when HIV was found in the milk of infected women in the 1980s, many milk banks were closed (Jones, 2003). With implementation of rigorous screening, testing, and pasteurization, the number of milk banks has since increased to hundreds worldwide (Azema & Callahan, 2003; Grøvslien & Grønn, 2009; Omarsdottir, Casper, Akerman, Polberger, & Vanpee, 2008; Pimenteira Thomaz et al., 2008).
H
Milk bank donors must meet criteria relating to their health, consumption of pharmaceutical or alternative medicines, alcohol or smoking, age of their children, history of international travel or country of residence, and ability to donate a minimum quantity of milk (Woo & Spatz, 2007). Donated milk undergoes bacteriological testing and
is usually also pasteurized (Hartmann, Pang, Keil, Hartmann, & Simmer, 2007). The screening criteria as well as the processes involved in producing banked milk make it a scarce and costly resource (Simmer & Hartmann, 2009; Woo & Spatz). The costs of banked donor milk are borne by the health system, insurance companies, or individuals. In the United States, banked donor milk can cost families as much as $4.50 per ounce (Woo & Spatz). Banked donor milk is generally only available through prescription by a doctor. Globally, the vast majority of banked donor milk is given to critically ill or premature infants in neonatal intensive care units (NICUs) (Simmer & Hartmann; Tully, Lockhart-Borman, & Updegrove, 2004) where the deprivation of human milk can lead to serious complications such as necrotizing enterocolitis (Quigley, Henderson, Anthony, & McGuire, 2007). Since the introduction of home refrigeration, mothers have been able to easily share expressed
C 2013 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses
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The cost imposed by some banks on recipient parents is a strong disincentive to some women for donating milk to a milk bank.
ceptions of the women involved in Internet-based peer-to-peer milk sharing.
Methods breast milk directly with one another outside of any organization or system. Until very recently, such peer-to-peer milk sharing required that mothers in need of milk be personally acquainted with mothers prepared to share milk. For this reason, peer-to-peer milk sharing occurred sporadically and on a small scale and has been the subject of only scant research (Bar-Yam, 2005; Thorley, 2009). More recently, social networking via the Internet has been used to connect mothers requiring milk with those willing to donate human milk. There are currently more than 170 such Facebook groups across more than 50 countries. This use of social networking means that milk sharing can easily occur between individuals previously unknown to one another and on a large scale. Some health authorities have been alarmed by the phenomenon of direct milk sharing and have warned parents to avoid peer-to-peer milk sharing. These authorities have expressed concern that the potential for disease transmission or contamination of the milk is unacceptably high (Agence Francaise de Securite Sanitaire des Produits de Sante; 2011; Health Canada, 2010; U.S. Food and Drug Administration; 2010). Parents in need of milk are advised instead to seek human milk only from a milk bank. However, in some regions milk banks have reported milk shortages. These shortages have been blamed on the advent of peer-to-peer milksharing networks. It has been suggested that women are donating milk to their peers in preference to milk banks, decreasing the volume of banked donor milk available to milk banks and therefore to NICUs (Dutton, 2011; Newman, 2011; Rochman, 2011). Thus, peer-to-peer milk sharing has been represented as depriving sick infants of milk that might be necessary for their survival (Newman).
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A descriptive survey design containing closed and open-ended questions was used to examine women’s perceptions of peer-to-peer milk sharing and milk banking. A convenience sample of peerto-peer milk donors and recipients was recruited via advertisement on the Facebook pages of the two largest milk-sharing groups, Human Milk 4 Human babies and Eats on Feets. By its very nature, peer-to-peer milk sharing is highly decentralized, and no records are kept of who is sharing milk with whom. As such, obtaining a representative sample of this group was impossible. However, wide advertisement of the study aimed to garner as diverse a sample as possible. To be eligible to participate, individuals were required to have donated or received breast milk in the previous six months in an arrangement that was facilitated via the Internet and also to be proficient reading and writing in English. Advertisements for the study directed individuals who met the inclusion criteria and who were interested in participating, to e-mail the study author indicating their desire for further information. In response, individuals were e-mailed a letter outlining the method, background, and purpose of the study. In this letter those who wished to participate were instructed to request via e-mail a copy of the study questionnaire; the request of which was considered as providing informed consent. In response to this request, individuals were e-mailed a copy of the relevant study questionnaire. Ninetyone percent of peer milk donors and 87% of peer milk recipients who requested the study questionnaire completed and returned the questionnaire. Approval for the study was obtained from the University of Western Sydney Human Research Ethics Committee.
As a part of a larger study examining Internetfacilitated peer-to-peer milk sharing, women’s reasons for donating milk to, or receiving milk from, a peer rather than a milk bank were explored. This is the first study to consider the experiences and per-
Peer-to-peer milk donors and recipients were asked questions relating to their interactions with milk banks as shown in Table 1. Closed-ended questions were analyzed using descriptive statistics and conventional qualitative content analysis was used to analyze open-ended responses (Hsieh & Shannon, 2005). Questionnaire responses were read, reread, and initially coded to identify recurring categories of response. Categories that were conceptually similar were combined, as appropriate. The number of responses within each category were counted and
JOGNN, 42, 451-461; 2013. DOI: 10.1111/1552-6909.12220
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RESEARCH
Gribble, K. D.
Table 1: Study Questions for Milk Donors and Recipients Milk donors Have you previously donated milk to a human milk bank? If yes, where did you donate and why did you not donate to the milk bank in preference to donating direct to another
Donor respondents offered a variety of reasons for not donating to a milk bank. Many donors expressed that they lacked opportunity to donate to a milk bank because there was no local milk bank or they did not meet milk bank criteria: “There is no milk bank in New Zealand,” and ‘Due to the fact that I was on medications (although safe for breastfeeding) they would not accept my milk.”
mother? If no, why not? How important to you is knowing the circumstances of the need of your milk recipients for breast milk to your motivation to provide milk? Milk Recipients Had you tried any alternatives to internet-facilitated peer-to-peer donor milk before you obtained donor milk (e.g., increasing your own milk supply, obtaining milk
Many donor respondents also expressed a view that the process of donating to a bank was difficult and that this had dissuaded them from donating to a milk bank: “I didn’t want to deal with the hassle of packing/shipping or taking milk to a milk bank. Also, I didn’t want to have to get blood tests each time like I’ve read many milk banks ask you to. It’s time consuming,” and “I would have had to pump at least 300oz within one month to qualify to donate.”
from a human milk bank, obtaining donor milk from a friend or relative, using infant formula)? If yes, please describe what you had tried and why this was not sufficient or why you decided not to continue?
responses organized by frequency. The reliability and trustworthiness of the coding was tested by providing a description of the coding categories and a random 20% sample of the responses to each question to two coders. The percentage of agreement between these coders was 98%.
Results Ninety-seven milk donors and 41 milk recipients from North America, Europe, Oceania, and Asia participated in the study. Donors ranged in age from 21 to 43, had from one to four children and previous breastfeeding experience from 4 to 120 months. The child of the most recent lactation ranged in age from 0 to 17 months, and donors had from one to nine recipients. Recipients ranged in age from 21 to 45, had from one to five children and previous breastfeeding experience of 0 to 118 months. The age of the recipient child at the time of first donation ranged from 1 day to 11 months. Recipients had from 1 to 40 donors from whom they had received 1.2 L to 300 L. Characteristics of participants are summarized in Table 2. A total of six donor respondents had previously donated to a milk bank, four to a not-for-profit milk bank and two to a for-profit milk bank. The remaining 88 donor respondents had never donated to a bank.
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Some donor respondents explained that a philosophical objection to milk banking had influenced their decisions to donate to a peer: “I prefer to donate directly to the mother because I know exactly where my milk goes, I know it won’t be pasteurized and I know it’s free of charge to the mother in need.” In addition: All the tests, rules, and how they treated my milk put me off. I hated the idea of sending my milk somewhere and have it treated like a specimen instead of the life force it is. I hated not knowing where my milk was going. I also hated the idea of my milk being sold to another family when it didn’t need to be. Finally, some donors described a philosophical attraction to aspects of peer-to-peer milk sharing that contributed to their decision to give their milk directly to another mother rather than to a milk bank: “I chose [Eats on Feets] this time because of the issue of access for mother who would not qualify for milk bank milk and also the personal aspect of milk sharing this way.” A summary of the reasons why donor respondents donated to a peer rather than to a milk bank is presented in Table 3. Almost one half of the respondents (44 individuals) did not donate to a milk bank because it was not possible for them to do so due to their location or because milk bank criteria excluded them. The publicity about shortages of banked milk affected one donor respondent who decided that she would make future donations via a milk bank:
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Table 2: Characteristics of Study Participants Mean
Standard deviation
Donors Age
30 yrs (n = 97)
4.2
Number of children
1.7 (n = 97)
0.82
Age of child of most recent lactation
3.2 mo (n = 93)
3.5
Duration of previous breastfeeding experience
21 mo (n = 93)
18.0
Number of recipients
2.1 (n = 97)
1.7
Volume of milk donated
26 L (n = 88)
39.4
Age
30 yrs (n = 41)
6.5
Number of children
2.0 (n = 41)
1.1
Age of recipient child
3.3 mo (n = 41)
3.4
Duration of previous breastfeeding experience
17 mo (n = 41)
21.6
Number of donors
8.1 (n = 41)
7.8
Volume of milk received
68 L (n = 34)
75.4
Recipients
After hearing about the Mother’s Milk Bank in Austin making an urgent call for donations . . . it has swayed my personal thoughts. . . . I recently decided to make any future donations to the Milk Bank. While every baby should have opportunity to be fed breast milk, I believe it’s more important for those babies who are born sick. In contrast to milk bank donors, peer-to-peer milk donors generally know the circumstances of their recipients. This feature of peer-to-peer milk sharing was important to many donor respondents. Fifty-seven donor respondents said that it was important or very important that they know the circumstances of their recipients, 16 said that it was somewhat important, and 23 said that it was not important. The most common reason for wanting to know about their recipient’s situation was to evaluate whether the need for milk was genuine It was clear that donor respondents valued their milk highly: “I think it was very important to know why that mother needed milk. I feel like I was giving a part of myself away, so I wanted it to go to someone who truly needed it,” and “I did want to know the circumstances so that I was sure it was not going to be wasted or sold on.” Donor respondents also commonly indicated that knowledge of their recipients’ situations provided them with the motivation that they required to express milk: “Knowing the struggles that these
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mothers went through trying to breastfeed their babies is a huge motivation. Any hassle of expressing and storing my milk is NOTHING compared to what these mother faced.” In addition, Pumping milk, while not difficult, is timeconsuming. Especially since I only pump to donate. . . . Knowing that she needs the milk for her little guy and being able to see him grow and thrive through pictures keepings me motivated to keep my supply up (and not just level out to just what my daughter needs). Some donor respondents gained a sense of satisfaction or were gratified by knowing that their milk could help a child: “It’s gratifying to hear a story of a child in need and know that I am able to help.” Some donor respondents wanted to know their recipient’s situation to make a judgment of their worthiness as a recipient of their milk: “I like to know that there is a genuine need. I wouldn’t donate to someone who is too lazy to pump, or someone who was uninterested in breastfeeding herself.” And others wanted to ensure that their recipient was the most needy: I would much rather donate to a child who will benefit and needs the milk the most (a
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Table 3: Reasons Why Donors Had not Donated Their Milk to a Human Milk Bank Category of response
Subcategory
F
Example of response
Lack of opportunity
No local milk
29
“There is no milk bank around I could donate to (I tried every place I could think of to donate the 40 litres of breastmilk that my son couldn’t drink due to severe allergies–it had to be thrown out L).”
Did not qualify
9
“I’m not permitted to donate to U.S. milk banks as I lived in the UK and I’m considered a risk for transmitting mad cow disease.”
Milk bank not accepting more
3
donors
“I had enquired into donating to a milk bank and was told that they were not taking any more donations due to financial reasons.”
Was not prescreened
2
“[I had milk in my freezer to donate but] I was told I would have needed to be prescreened before I started pumping.”
Milk bank did not respond
1
“I wanted to donate milk to a milk bank and attempted to contact the one closest to me but never got a response.”
Milk banking is difficult
Viewed the process of
11
donating as a barrier Don’t know about milk banks
“The process is long and tiring. My milk can go to local mothers much easier.”
7
“There is not very much information easily accessible about human milk banks.”
Didn’t want to ship milk
4
“I didn’t want to deal with the hassle of packing/shipping.”
Philosophical
Object to parents having to
objections to milk
27
pay for banked milk
“I would not donate to a milk bank because I don’t support the way they charge exorbitant amounts
banking
of money to families who are obviously in need.” Do not like milk to be
5
pasteurized
“I like that my milk isn’t fully processed when I share it with the family I donate to- all the good antibodies and cellular components etc are retained and able to be used instead of lost in the “cleaning” process that milk bank milk undergoes. I know they need to do that, but to me it feels like my milk is being used more fully when shared fresh.”
Local milk banks are for profit
2
“I have a fundamental aversion to charging parents exorbitant amounts of money to provide for the health of their children . . . I noticed that the milk bank collected milk, then gave it to a for profit company which processed the milk and sold it to hospitals and families.”
Philosophically
Prefer to know recipient
10
attracted to peer
“I think that would be too impersonal for me. I like knowing who is getting my breastmilk.”
sharing Wanted to help mothers and
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4
“I chose EoF over milk bank this time because of the
children who would not
issue of access for mothers who would not qualify
qualify for banked milk
for milk bank milk.”
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Knowing why milk was needed provided donors with motivation for the work of expressing.
premature child or a child with disabilities or intolerance of formula or a mother who absolutely can’t breastfeed) rather than a child who would be fine with formula or whole milk. Table 4 presents a summary of the reasons why donor respondents felt it was important to understand the circumstances of their recipients. None of the recipient respondents had used banked milk. Three recipient respondents had tried to obtain banked milk but were unsuccessful because their children did not meet the require-
ments, because of their locations, or because of the cost. Recipient respondents made statements such as, “I had to use formula because I didn’t make enough milk and the banks said they could not sell me any milk,” and “I contacted the one and only milk bank in Canada but was not able to obtain milk from them for various reasons (location, lack of supply, cost).” Nine respondents rejected attempting to obtain banked milk because it was inaccessible or because of the cost: “I knew that we could not afford milk banks as I had looked into this with my preemie [previous child] and at $4/oz that was way beyond what we could afford,” and “There is no local milk bank in our area.” One respondent, a Malaysian Muslim woman, explained that that she must know her donors to determine that they were also Muslim and to take account of the relationship created by the sharing of milk. A summary of
Table 4: Reasons Why Donors Felt It Was Important to Know the Circumstances of the Milk Recipients Category of response
F
Example of response
Needing to know that the need for
16
“It is very important to me to make sure the milk that I have expressed will be
breast milk was real Knowing is a motivator donate or to
used to provide nutrients for a baby in need.” 13
continue to express milk Would not be happy to donate if
“It is a sacrifice and if I know the situation it is motivational for me to sit with pumps attached to me multiple times a day.”
6
“I am not just going to give the milk to just anybody. I want to know that the
mother has not worked to
mom is having a lot of difficulty producing her own milk or is physically
maximize her own milk supply
unable to produce her own. A mom that just seems to have gotten lazy with pumping or is not putting forth effort to increase her supply for her child will probably not receive milk from me.”
Like to know the story
5
“I like to know why they need the milk, but only because I’m curious.”
Donating milk is something personal
5
“As I have literally put a piece of myself into these bottles and bags, I want to feel at peace that I am giving my milk to someone who needs it.”
So I can choose the recipient that will
4
benefit most Knowing is fulfilling
“I would much rather donate to a child who will benefit and needs the milk the most.”
3
“Knowing that I am helping her to provide her baby with what she can’t provide herself is really fulfilling and makes me want to give her all the milk I can.”
No reason provided
3
So the relationship is open
2
“So there is an open and honest relationship.”
Match the age of the baby
2
“What is important to be is that the child I donate to is around the same age as my current nursling.” D83
To know that the milk is valued
1
“I don’t want my milk that I spent hours expressing, lovingly for my baby, to go to someone who won’t treasure it.”
To have empathy
1
“I would want to know in order to justify my donation, to put myself in that mother’s shoes . . . to understand her need.”
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Table 5: Reasons Why Recipients Did not Use Banked Donor Milk Category of response
f
Example of response
Failed to obtain donor milk
3
“I contacted a milk bank, but they stopped responding to me after my
Rejected attempting to obtain donor milk
9
“I had looked into obtaining milk from a human milk bank . . . but it
first email. My daughter does not have a ‘medical need.’”
seemed to be only available for preterm or sick babies and even if I could obtain it, it was very expensive.” Banked milk was not acceptable/too
1
risky/recipient must know donor
“The mothers must be Muslim and is breastfeeding their children as well . . . frequent visit to the milk donor is important to keep track on their location.”
reasons why recipients had not used banked milk is presented in Table 5.
Discussion Only a Portion of Lactating Women Are Potential Milk Bank Donors Donors in this study were sharing their milk directly with other mothers, and few had had any interaction with a human milk bank. One half of the donor respondents were excluded from donating to a milk bank because they did not qualify or because there was no local milk bank. This suggests that not all lactating women can be viewed as potential bank donors. The reasons given by the remaining donor respondents for failing to donate to a bank suggest modification of the milk banking process that may assist in bank donor recruitment.
Reducing the Cost and Process Disincentive to Milk Donation Although almost all milk banks are not-for-profit organizations, the cost imposed by banks on recipient parents in some jurisdictions (e.g., North America) can be a strong disincentive to women donating milk to a milk bank. Donor respondents were affronted by the idea that milk banks could charge milk recipients a great deal of money for their gift of milk. Educating potential donors about the costs of processing banked milk might alleviate some of these concerns. In addition, fundraising to cover the expenses of recipients who cannot have the cost of banked milk borne by their hospital or health insurance might address this issue. Finally, milk banks could provide information on the proportion of their recipients who have their costs covered by their hospital or insurance so that potential donors can be reassured that few recipients are paying directly for milk. The impact of the costs involved in using banked milk
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on the willingness of potential donors to donate a milk bank deserves further investigation. The processes involved in donating to a milk bank were considered to be a barrier by many peer donor respondents who had already spent a considerable amount of time expressing milk for donation. Thus, simplification of the donation process, for example, local collection depots rather than individual shipping of milk, could make more milk available to milk banks.
Providing Information as Motivation for Donors Many donor respondents stated that they would not donate to a milk bank because they preferred to know the recipient. More than one half stated that it was important or very important for them to know why their recipient(s) needed milk. The reasons donor respondents wanted know the circumstances surrounding the need for donor milk were primarily related to ensuring that the need was genuine or understanding the situation so as to be motivated to provide milk. Obtaining milk from a milk bank requires physician assessment of infant need and so deals with the concern of donors who simply required that their milk be given to a needy infant. This may not be sufficient for donor respondents who wished to assess whether recipients had “tried hard enough” to supply their own milk to their infants. This sentiment, implies an unwillingness to do someone else’s “breastwork” (Bartlett, 2005; Stearns, 2009) if she is capable of doing it herself. It is also a judgment of the mother’s worthiness, responsibility, or goodness (Murphy, 2000). Further, some donor responses indicated that they placed a high value on their milk and wished to ensure that the recipient(s) would appreciate the worth of the milk. The value that donors place in
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their milk may partially flow from the idea that the milk is a part of the donor’s self (a concept specifically identified by some donors), and so the gift of breast milk may be perceived as a gift of the self. These concerns are unlikely to be able to be addressed by milk banks. The absence of feedback to donors about the need for and outcome of banked donor milk is a barrier to donation that could be overcome. Previous research has found that milk bank donors would like to know more about what happens to their milk after donation including who receives the milk, why the milk is needed, and why the infant’s mother is unable to provide milk (De Alencar & Seidl, 2010). Milk banks have historically followed organ donation policy in maintaining anonymity and not providing donors with information about how their milk is used. Anonymity in organ donations exists because identification of recipients might result in feelings of obligation to continue donations (Warwick, 1997). This constraint may not apply in milk donation because the milk of another can easily substitute for any individual donor. Maintenance of anonymity also protects recipients from claims by donors, whether this is likely to be an issue in milk donation is unknown. However, not all institution-facilitated milk banking preserves anonymity (e.g., Ghaly, 2012; Hsu et al., 2011) and investigating how such models manage these issues is warranted. There are logistical difficulties associated with providing donors with information about the recipients of their milk. Many milk banks pool donations so that recipients will receive milk from many donors. Furthermore, hospitals sometimes order milk from banks in anticipation of it being required so there may be some time between donation and use. Some donor respondents reported that their ability to express milk was conditional upon knowing why it was needed because this provided encouragement that was necessary for them to be able to express. In normal circumstances, the demandand-supply principle of milk synthesis means that women are capable of producing milk far in excess of that required by their infants (Daly, Owens, & Hartmann, 1993; Kent et al., 2006). However, motivation is required to engage in and sustain the work involved in milk expression. Milk expression has been identified as demanding, tedious, and stressful, requiring commitment and sacrifice over a protracted period (Avishai, 2007; Stearns, 2009). As such donors are not only donating their milk, but also their time and work and the investment
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required of them is large. No payment is made for donated milk but the milk is donated with a cost to donor and their families; breast milk can only be considered to be free if the value of women’s labor is ignored (Shaw, 2010). Although none of the donor respondents desired payment for their work or milk, there is the sense that information about their recipient’s need for their milk constitutes a reward for their work that facilitates milk donation. Thus, providing milk bank donors with greater information could make more banked donor milk available by providing donors with motivation to donate milk. This would increase the number of women able to donate and/or increase the length of time for which donors continue to donate. Information may also be considered a type of reciprocity that acknowledges the effort and giving of self that is involved in milk donation (Shaw, 2010). Donors may not require identifying information to donate to milk banks but simply greater knowledge of the need for or the use of their milk. As demonstrated by the donor respondent who changed her mind about donating to a bank after hearing of shortages, even basic information demonstrating the need for milk can change practice.
Referring Parents of Healthy Infants to Milk Banks Is not Helpful Recipient respondents had had very limited contact with milk banks, and none of them had been able to obtain banked donor milk. The infants of recipient respondents were generally healthy and without complex medical problems and so did not meet the criteria usually necessary to qualify for banked donor milk. For the recipient respondents who were unable to provide their own breast milk the choice of supplementary milk was infant formula or human milk donated by a peer. Should these experiences be typical, statements by health authorities that those needing additional human milk for their infants obtain it from a milk bank are not helpful at best and disingenuous at worst. It does not assist families in need of milk for their children to be directed to milk banks that cannot supply them with milk, nor does it assist milk banks to be inundated with requests for milk that they cannot supply.
Identification of Milk Donors Provides Safety to Islamic Milk Recipients One recipient respondent expressed a religious imperative to know her donors. Although her view
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was singular among the recipients in this study, there is reason to believe that it may be an opinion that is widespread in Muslim countries. Breast milk has religious meaning in Islam with the infant having a recognized right to breastfeed for two years including via wet nursing (Shaikh & Ahmed, 2006). However, the consumption of breast milk creates a familial relationship (milk kinship) between the woman and child and care must be taken to avoid consanguineous marriages (Parkes, 2001). Some Muslims consider that the feeding of banked donor milk to hospitalized infants does not create a milk kinship relationship (Ghaly, 2012). However, no Muslim country has a traditional milk bank (ElKhuffash & Unger, 2012). Although traditional milk banking may be unacceptable to many Muslims, changes in the process may make it permissible. The Duchess of Kent Hospital in Malaysia and Adan Hospital in Kuwait provide a modified milkbanking process in their NICUs whereby milk is not pooled and donor and recipient are introduced to one another (Ghaly, 2012; Hsu et al., 2011). This is effectively a regulated form of peer-to-peer milk sharing. The issue of milk kinship is another reason for milk banks (especially those in areas with a large Muslim population) to consider allowing for greater transparency in the milk banking process.
Peer-to-Peer Donors and Recipients and Milk Bank Donors and Recipients Are Recruited from Different Pools Women have always shared milk with one another, but the scale of the online milk-sharing networks has led to fears that this new form of milk sharing is jeopardizing the infants served by milk banks. However, concerns about shortages of banked milk have only been expressed in North America. Data on the amount of milk donated to milk banks in North America is not available, but according to the Human Milk Banking Association of North America the amount of milk dispensed by member milk banks has steadily increased from 1.2 million ounces in 2007 to 2.2 million ounces in 2011 (Personal communication, Jean Drulia, President Human Milk Banking Association of North America, May 16, 2012). Thus, it seems that milk shortages may be more a result of increased demand rather than a decreased supply. Extensive publicity about peer-to-peer milk sharing including associated discussion about milk banks may have increased awareness of banked milk and so increased the demand for banked milk (the Factiva database yielded 122 articles in print media including the names Human Milk 4 Human Babies
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Milk donated via peer sharing may be sourced largely from a different pool of donors from that of milk banks.
and Eats on Feets). Furthermore, the U.S. surgeon general’s appeal to make banked donor milk available to more infants in NICUs, may have increased the demand (U.S. Department of Health and Human Services; 2011). Regardless of the reason, the continuing growth in the need for banked donor milk requires an increased supply of donors and their milk. Thus far, peer-to-peer milk-sharing networks appear to have been viewed as a threat to traditional milk banks as a competitor for the scarce resource of donors and their milk. The data from this study suggests a different possibility, that the milk being donated via peer-to-peer sharing is predominantly sourced from a different pool of donors than that of milk banks. It seems that a large proportion of women who donate to a peer are excluded from donating to a milk bank because of their location or personal characteristics. Furthermore, it seems that it is the very nature of peer sharing, where the circumstances of recipients are known to donors, that enables women to donate and the absence of this information is a barrier to donation to a milk bank. However, there is a possibility that some of this latter group of donors might be able to be recruited to milk banks with modification of the milk banking process. It is also possible that peer-topeer milk sharing is decreasing the demand on milk banks from the population of relatively well infants served by milk sharing. The conclusions that can be drawn from this study are limited by the use of convenience sample of donors and though care was taken to recruit as diverse as sample as possible, it is unknown how representative their views and experiences are of the population of individuals involved in peer-topeer milk sharing. A further limitation of this study was that it required respondents to be sufficiently proficient in English to be able to complete the study questionnaire. This likely limited the participation of donors and recipients in countries where languages other than English predominate. Further research should be undertaken in languages other than English, in particular to explore milk sharing in Islamic countries where, as noted, the belief in milk kinship impedes the development of traditional milk banking.
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Implications for Practice Despite concerns about the safety of peer-to-peer milk sharing and its potential impact upon milk banks, it is likely that Internet-based milk-sharing networks will continue to operate. With this in mind, cooperation should be encouraged between milk banks and peer-to-peer milk-sharing networks. Peer-to-peer milk-sharing networks would benefit from the expertise and guidance of milk banks in ensuring that milk is shared as safely as possible. Milk banks would benefit from the experiences of peer-to-peer milk-sharing networks in supporting lactating women to engage in the work of expressing milk for donation. Peer-to-peer networks could also act as a conduit encouraging women who are suitable and able to donate milk to a milk bank to consider doing so. Health professionals should not direct parents in need of human milk for their infant to milk banks unless obtaining milk from such banks is a realistic possibility. Where banked donor milk is unavailable, health professionals should provide parents with evidencedbased information about the risks and benefits of other feeding options in order to enable informed decision-making (Gribble, 2012; Gribble & Hausman, 2012).
Azema, E., & Callahan, S. (2003). Breast milk donors in France: A portrait of the typical donor and the utility of milk banking in the French breastfeeding context. Journal of Human Lactation, 19(2), 199–202. Bar-Yam, N. B. (2005). Sharing breastfeeding: The experience of cross nursing among mothers in the United States. Birth Issues, 14(2), 57–63. Bartlett, A. (2005). Breastwork. Sydney, Australia: University of NSW Press. Daly, S. E., Owens, R. A., & Hartmann, P. E. (1993). The short-term synthesis and infant-regulated removal of milk in lactating women. Experimental Physiology, 78(2), 209–220. De Alencar, L. C. E., & Seidl, E. M. F. (2010). Breast milk donation and social support: Reports of women donors. Revista LatinoAmericana de Enfermagem, 18(3), 381–389. Dutton, J. (2011). Liquid gold: The booming market for human breast milk. Wired Magazine, Retrieved from http://www.wired.com/ magazine/2011/05/ff_milk/2/ El-Khuffash, A., & Unger, S. (2012). The concept of milk kinship in Islam. Journal of Human Lactation, 28(2), 125–127. Ghaly, M. (2012). Milk banks through the lens of Muslim scholars: One text in two contexts. Bioethics, 26(3), 117–127. Gribble, K. D. (2012). Biomedical ethics and peer-to-peer milk sharing. Clinical Lactation, 3(3), 109–112. Gribble, K. D., & Hausman, B. L. (2012). Milk Sharing and formula feeding: Infant feeding risks in comparative perspective? Australasian Medical Journal, 5(5), 275–283. Grøvslien, A. H., & Grønn, M. (2009). Donor milk banking and breastfeeding in Norway. Journal of Human Lactation, 25(2), 206–210. Hartmann, B. T., Pang, W. W., Keil, A. D., Hartmann, P. E., & Simmer, K. (2007). Best practice guidelines for the operation of a donor
Conclusion Concerns have been raised that milk banks and peer-to-peer milk-sharing networks are in competition with one another. However, it appears that peer-to-peer milk sharing and milk banking may largely involve different groups of women and infants. With greater transparency in the milkbanking process some peer sharing donors may choose instead to donate to a milk bank. Cooperation between milk banks and peer-to-peer milksharing networks could benefit both groups.
human milk bank in an Australian NICU. Early Human Development, 83(10), 667–673. Health Canada. (2010). Health Canada raises concerns about the use of unprocessed human milk. Retrieved from http://www.hc -sc.gc.ca/ahc-asc/media/advisories-avis/_2010/2010_202-eng .php Hsieh, H.-F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277– 1288. Hsu, H.-T., Fong, T.-V., Hassan, N. M., Wong, H.-L., Rai, J. K., & Khalid, Z. (2011). Human milk donation is an alternative to human milk bank. Breastfeeding Medicine, 7(2), 118–122. Jones, F. (2003). History of North American donor milk banking: One hundred years of progress. Journal of Human Lactation, 19(3), 313–318.
Acknowledgement The author acknowledges Professor Virginia Schmied, Dr. Kathleen Kendall-Tackett, and the anonymous reviewers who provided helpful commentary and suggestions.
Kent, J. C., Mitoulas, L. R., Cregan, M. D., Ramsay, D. T., Doherty, D. A., & Hartmann, P. E. (2006). Volume and frequency of breastfeedings and fat content of breast milk throughout the day. Pediatrics, 117(3), e387–e395. Murphy, E. (2000). Risk, responsibility, and rhetoric in infant feeding. Journal of Contemporary Ethnography, 29(3), 291–325. Newman, B. (2011). Demand for breast milk outstrips supply at San
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Rochman, B. (2011). Milk banks vs. milk swaps: Breast milk’s latest
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Peer-to-Peer Milk Donors’ and Recipients’ Experiences and Perceptions of Donor Milk Banks Karleen D. Gribble
Correspondence Karleen D Gribble, BRurSc, PhD, School of Nursing and Midwifery, University of Western Sydney, Locked Bag 1797, Penrith NSW 2751, Australia. [email protected]
ABSTRACT
Keywords milk banking wet nursing milk sharing social media
Participants: Ninety-eight milk donors and 41 milk recipients who had donated or received breast milk in an arrangement that was facilitated via the Internet.
Objective: To explore the intersection of peer-to-peer milk sharing and donor milk banks. Methods: A descriptive survey design containing closed and open-ended questions was used to examine women’s perceptions of peer-to-peer milk sharing and milk banking. Closed-ended questions were analyzed using descriptive statistics and conventional qualitative content analysis was used to analyze open-ended responses. Setting: Participants were recruited via the Facebook sites of two online milk-sharing networks (Human Milk 4 Human Babies and Eats on Feet).
Results: One half of donor recipients could not donate to a milk bank because there were no banks local to them or they did not qualify as donors. Other respondents did not donate to a milk bank because they viewed the process as difficult, had philosophical objections to milk banking, or had a philosophical attraction to peer sharing. Most donor respondents felt it was important to know the circumstances of their milk recipients. No recipient respondents had obtained milk from a milk bank; it was recognized that they would not qualify for banked milk or that banked milk was cost prohibitive. Conclusion: Peer-to-peer milk donors and recipients may differ from milk bank donors and recipients in significant ways. Cooperation between milk banks and peer sharing networks could benefit both groups.
JOGNN, 42, 451-461; 2013. DOI: 10.1111/1552-6909.12220 Accepted March 2013
Karleen D. Gribble, BRurSc, PhD, is an adjunct fellow in the School of Nursing and Midwifery, University of Western Sydney, Penrith, Australia.
The author reports no conflict of interest or relevant financial relationships.
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uman milk banks collect and process donations of expressed breast milk and provide the milk to infants in need of human milk through the health system. The first milk banks opened early in the 20th century, however, when HIV was found in the milk of infected women in the 1980s, many milk banks were closed (Jones, 2003). With implementation of rigorous screening, testing, and pasteurization, the number of milk banks has since increased to hundreds worldwide (Azema & Callahan, 2003; Grøvslien & Grønn, 2009; Omarsdottir, Casper, Akerman, Polberger, & Vanpee, 2008; Pimenteira Thomaz et al., 2008).
H
Milk bank donors must meet criteria relating to their health, consumption of pharmaceutical or alternative medicines, alcohol or smoking, age of their children, history of international travel or country of residence, and ability to donate a minimum quantity of milk (Woo & Spatz, 2007). Donated milk undergoes bacteriological testing and
is usually also pasteurized (Hartmann, Pang, Keil, Hartmann, & Simmer, 2007). The screening criteria as well as the processes involved in producing banked milk make it a scarce and costly resource (Simmer & Hartmann, 2009; Woo & Spatz). The costs of banked donor milk are borne by the health system, insurance companies, or individuals. In the United States, banked donor milk can cost families as much as $4.50 per ounce (Woo & Spatz). Banked donor milk is generally only available through prescription by a doctor. Globally, the vast majority of banked donor milk is given to critically ill or premature infants in neonatal intensive care units (NICUs) (Simmer & Hartmann; Tully, Lockhart-Borman, & Updegrove, 2004) where the deprivation of human milk can lead to serious complications such as necrotizing enterocolitis (Quigley, Henderson, Anthony, & McGuire, 2007). Since the introduction of home refrigeration, mothers have been able to easily share expressed
C 2013 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses
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The cost imposed by some banks on recipient parents is a strong disincentive to some women for donating milk to a milk bank.
ceptions of the women involved in Internet-based peer-to-peer milk sharing.
Methods breast milk directly with one another outside of any organization or system. Until very recently, such peer-to-peer milk sharing required that mothers in need of milk be personally acquainted with mothers prepared to share milk. For this reason, peer-to-peer milk sharing occurred sporadically and on a small scale and has been the subject of only scant research (Bar-Yam, 2005; Thorley, 2009). More recently, social networking via the Internet has been used to connect mothers requiring milk with those willing to donate human milk. There are currently more than 170 such Facebook groups across more than 50 countries. This use of social networking means that milk sharing can easily occur between individuals previously unknown to one another and on a large scale. Some health authorities have been alarmed by the phenomenon of direct milk sharing and have warned parents to avoid peer-to-peer milk sharing. These authorities have expressed concern that the potential for disease transmission or contamination of the milk is unacceptably high (Agence Francaise de Securite Sanitaire des Produits de Sante; 2011; Health Canada, 2010; U.S. Food and Drug Administration; 2010). Parents in need of milk are advised instead to seek human milk only from a milk bank. However, in some regions milk banks have reported milk shortages. These shortages have been blamed on the advent of peer-to-peer milksharing networks. It has been suggested that women are donating milk to their peers in preference to milk banks, decreasing the volume of banked donor milk available to milk banks and therefore to NICUs (Dutton, 2011; Newman, 2011; Rochman, 2011). Thus, peer-to-peer milk sharing has been represented as depriving sick infants of milk that might be necessary for their survival (Newman).
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A descriptive survey design containing closed and open-ended questions was used to examine women’s perceptions of peer-to-peer milk sharing and milk banking. A convenience sample of peerto-peer milk donors and recipients was recruited via advertisement on the Facebook pages of the two largest milk-sharing groups, Human Milk 4 Human babies and Eats on Feets. By its very nature, peer-to-peer milk sharing is highly decentralized, and no records are kept of who is sharing milk with whom. As such, obtaining a representative sample of this group was impossible. However, wide advertisement of the study aimed to garner as diverse a sample as possible. To be eligible to participate, individuals were required to have donated or received breast milk in the previous six months in an arrangement that was facilitated via the Internet and also to be proficient reading and writing in English. Advertisements for the study directed individuals who met the inclusion criteria and who were interested in participating, to e-mail the study author indicating their desire for further information. In response, individuals were e-mailed a letter outlining the method, background, and purpose of the study. In this letter those who wished to participate were instructed to request via e-mail a copy of the study questionnaire; the request of which was considered as providing informed consent. In response to this request, individuals were e-mailed a copy of the relevant study questionnaire. Ninetyone percent of peer milk donors and 87% of peer milk recipients who requested the study questionnaire completed and returned the questionnaire. Approval for the study was obtained from the University of Western Sydney Human Research Ethics Committee.
As a part of a larger study examining Internetfacilitated peer-to-peer milk sharing, women’s reasons for donating milk to, or receiving milk from, a peer rather than a milk bank were explored. This is the first study to consider the experiences and per-
Peer-to-peer milk donors and recipients were asked questions relating to their interactions with milk banks as shown in Table 1. Closed-ended questions were analyzed using descriptive statistics and conventional qualitative content analysis was used to analyze open-ended responses (Hsieh & Shannon, 2005). Questionnaire responses were read, reread, and initially coded to identify recurring categories of response. Categories that were conceptually similar were combined, as appropriate. The number of responses within each category were counted and
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Gribble, K. D.
Table 1: Study Questions for Milk Donors and Recipients Milk donors Have you previously donated milk to a human milk bank? If yes, where did you donate and why did you not donate to the milk bank in preference to donating direct to another
Donor respondents offered a variety of reasons for not donating to a milk bank. Many donors expressed that they lacked opportunity to donate to a milk bank because there was no local milk bank or they did not meet milk bank criteria: “There is no milk bank in New Zealand,” and ‘Due to the fact that I was on medications (although safe for breastfeeding) they would not accept my milk.”
mother? If no, why not? How important to you is knowing the circumstances of the need of your milk recipients for breast milk to your motivation to provide milk? Milk Recipients Had you tried any alternatives to internet-facilitated peer-to-peer donor milk before you obtained donor milk (e.g., increasing your own milk supply, obtaining milk
Many donor respondents also expressed a view that the process of donating to a bank was difficult and that this had dissuaded them from donating to a milk bank: “I didn’t want to deal with the hassle of packing/shipping or taking milk to a milk bank. Also, I didn’t want to have to get blood tests each time like I’ve read many milk banks ask you to. It’s time consuming,” and “I would have had to pump at least 300oz within one month to qualify to donate.”
from a human milk bank, obtaining donor milk from a friend or relative, using infant formula)? If yes, please describe what you had tried and why this was not sufficient or why you decided not to continue?
responses organized by frequency. The reliability and trustworthiness of the coding was tested by providing a description of the coding categories and a random 20% sample of the responses to each question to two coders. The percentage of agreement between these coders was 98%.
Results Ninety-seven milk donors and 41 milk recipients from North America, Europe, Oceania, and Asia participated in the study. Donors ranged in age from 21 to 43, had from one to four children and previous breastfeeding experience from 4 to 120 months. The child of the most recent lactation ranged in age from 0 to 17 months, and donors had from one to nine recipients. Recipients ranged in age from 21 to 45, had from one to five children and previous breastfeeding experience of 0 to 118 months. The age of the recipient child at the time of first donation ranged from 1 day to 11 months. Recipients had from 1 to 40 donors from whom they had received 1.2 L to 300 L. Characteristics of participants are summarized in Table 2. A total of six donor respondents had previously donated to a milk bank, four to a not-for-profit milk bank and two to a for-profit milk bank. The remaining 88 donor respondents had never donated to a bank.
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Some donor respondents explained that a philosophical objection to milk banking had influenced their decisions to donate to a peer: “I prefer to donate directly to the mother because I know exactly where my milk goes, I know it won’t be pasteurized and I know it’s free of charge to the mother in need.” In addition: All the tests, rules, and how they treated my milk put me off. I hated the idea of sending my milk somewhere and have it treated like a specimen instead of the life force it is. I hated not knowing where my milk was going. I also hated the idea of my milk being sold to another family when it didn’t need to be. Finally, some donors described a philosophical attraction to aspects of peer-to-peer milk sharing that contributed to their decision to give their milk directly to another mother rather than to a milk bank: “I chose [Eats on Feets] this time because of the issue of access for mother who would not qualify for milk bank milk and also the personal aspect of milk sharing this way.” A summary of the reasons why donor respondents donated to a peer rather than to a milk bank is presented in Table 3. Almost one half of the respondents (44 individuals) did not donate to a milk bank because it was not possible for them to do so due to their location or because milk bank criteria excluded them. The publicity about shortages of banked milk affected one donor respondent who decided that she would make future donations via a milk bank:
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Table 2: Characteristics of Study Participants Mean
Standard deviation
Donors Age
30 yrs (n = 97)
4.2
Number of children
1.7 (n = 97)
0.82
Age of child of most recent lactation
3.2 mo (n = 93)
3.5
Duration of previous breastfeeding experience
21 mo (n = 93)
18.0
Number of recipients
2.1 (n = 97)
1.7
Volume of milk donated
26 L (n = 88)
39.4
Age
30 yrs (n = 41)
6.5
Number of children
2.0 (n = 41)
1.1
Age of recipient child
3.3 mo (n = 41)
3.4
Duration of previous breastfeeding experience
17 mo (n = 41)
21.6
Number of donors
8.1 (n = 41)
7.8
Volume of milk received
68 L (n = 34)
75.4
Recipients
After hearing about the Mother’s Milk Bank in Austin making an urgent call for donations . . . it has swayed my personal thoughts. . . . I recently decided to make any future donations to the Milk Bank. While every baby should have opportunity to be fed breast milk, I believe it’s more important for those babies who are born sick. In contrast to milk bank donors, peer-to-peer milk donors generally know the circumstances of their recipients. This feature of peer-to-peer milk sharing was important to many donor respondents. Fifty-seven donor respondents said that it was important or very important that they know the circumstances of their recipients, 16 said that it was somewhat important, and 23 said that it was not important. The most common reason for wanting to know about their recipient’s situation was to evaluate whether the need for milk was genuine It was clear that donor respondents valued their milk highly: “I think it was very important to know why that mother needed milk. I feel like I was giving a part of myself away, so I wanted it to go to someone who truly needed it,” and “I did want to know the circumstances so that I was sure it was not going to be wasted or sold on.” Donor respondents also commonly indicated that knowledge of their recipients’ situations provided them with the motivation that they required to express milk: “Knowing the struggles that these
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mothers went through trying to breastfeed their babies is a huge motivation. Any hassle of expressing and storing my milk is NOTHING compared to what these mother faced.” In addition, Pumping milk, while not difficult, is timeconsuming. Especially since I only pump to donate. . . . Knowing that she needs the milk for her little guy and being able to see him grow and thrive through pictures keepings me motivated to keep my supply up (and not just level out to just what my daughter needs). Some donor respondents gained a sense of satisfaction or were gratified by knowing that their milk could help a child: “It’s gratifying to hear a story of a child in need and know that I am able to help.” Some donor respondents wanted to know their recipient’s situation to make a judgment of their worthiness as a recipient of their milk: “I like to know that there is a genuine need. I wouldn’t donate to someone who is too lazy to pump, or someone who was uninterested in breastfeeding herself.” And others wanted to ensure that their recipient was the most needy: I would much rather donate to a child who will benefit and needs the milk the most (a
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Table 3: Reasons Why Donors Had not Donated Their Milk to a Human Milk Bank Category of response
Subcategory
F
Example of response
Lack of opportunity
No local milk
29
“There is no milk bank around I could donate to (I tried every place I could think of to donate the 40 litres of breastmilk that my son couldn’t drink due to severe allergies–it had to be thrown out L).”
Did not qualify
9
“I’m not permitted to donate to U.S. milk banks as I lived in the UK and I’m considered a risk for transmitting mad cow disease.”
Milk bank not accepting more
3
donors
“I had enquired into donating to a milk bank and was told that they were not taking any more donations due to financial reasons.”
Was not prescreened
2
“[I had milk in my freezer to donate but] I was told I would have needed to be prescreened before I started pumping.”
Milk bank did not respond
1
“I wanted to donate milk to a milk bank and attempted to contact the one closest to me but never got a response.”
Milk banking is difficult
Viewed the process of
11
donating as a barrier Don’t know about milk banks
“The process is long and tiring. My milk can go to local mothers much easier.”
7
“There is not very much information easily accessible about human milk banks.”
Didn’t want to ship milk
4
“I didn’t want to deal with the hassle of packing/shipping.”
Philosophical
Object to parents having to
objections to milk
27
pay for banked milk
“I would not donate to a milk bank because I don’t support the way they charge exorbitant amounts
banking
of money to families who are obviously in need.” Do not like milk to be
5
pasteurized
“I like that my milk isn’t fully processed when I share it with the family I donate to- all the good antibodies and cellular components etc are retained and able to be used instead of lost in the “cleaning” process that milk bank milk undergoes. I know they need to do that, but to me it feels like my milk is being used more fully when shared fresh.”
Local milk banks are for profit
2
“I have a fundamental aversion to charging parents exorbitant amounts of money to provide for the health of their children . . . I noticed that the milk bank collected milk, then gave it to a for profit company which processed the milk and sold it to hospitals and families.”
Philosophically
Prefer to know recipient
10
attracted to peer
“I think that would be too impersonal for me. I like knowing who is getting my breastmilk.”
sharing Wanted to help mothers and
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“I chose EoF over milk bank this time because of the
children who would not
issue of access for mothers who would not qualify
qualify for banked milk
for milk bank milk.”
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Knowing why milk was needed provided donors with motivation for the work of expressing.
premature child or a child with disabilities or intolerance of formula or a mother who absolutely can’t breastfeed) rather than a child who would be fine with formula or whole milk. Table 4 presents a summary of the reasons why donor respondents felt it was important to understand the circumstances of their recipients. None of the recipient respondents had used banked milk. Three recipient respondents had tried to obtain banked milk but were unsuccessful because their children did not meet the require-
ments, because of their locations, or because of the cost. Recipient respondents made statements such as, “I had to use formula because I didn’t make enough milk and the banks said they could not sell me any milk,” and “I contacted the one and only milk bank in Canada but was not able to obtain milk from them for various reasons (location, lack of supply, cost).” Nine respondents rejected attempting to obtain banked milk because it was inaccessible or because of the cost: “I knew that we could not afford milk banks as I had looked into this with my preemie [previous child] and at $4/oz that was way beyond what we could afford,” and “There is no local milk bank in our area.” One respondent, a Malaysian Muslim woman, explained that that she must know her donors to determine that they were also Muslim and to take account of the relationship created by the sharing of milk. A summary of
Table 4: Reasons Why Donors Felt It Was Important to Know the Circumstances of the Milk Recipients Category of response
F
Example of response
Needing to know that the need for
16
“It is very important to me to make sure the milk that I have expressed will be
breast milk was real Knowing is a motivator donate or to
used to provide nutrients for a baby in need.” 13
continue to express milk Would not be happy to donate if
“It is a sacrifice and if I know the situation it is motivational for me to sit with pumps attached to me multiple times a day.”
6
“I am not just going to give the milk to just anybody. I want to know that the
mother has not worked to
mom is having a lot of difficulty producing her own milk or is physically
maximize her own milk supply
unable to produce her own. A mom that just seems to have gotten lazy with pumping or is not putting forth effort to increase her supply for her child will probably not receive milk from me.”
Like to know the story
5
“I like to know why they need the milk, but only because I’m curious.”
Donating milk is something personal
5
“As I have literally put a piece of myself into these bottles and bags, I want to feel at peace that I am giving my milk to someone who needs it.”
So I can choose the recipient that will
4
benefit most Knowing is fulfilling
“I would much rather donate to a child who will benefit and needs the milk the most.”
3
“Knowing that I am helping her to provide her baby with what she can’t provide herself is really fulfilling and makes me want to give her all the milk I can.”
No reason provided
3
So the relationship is open
2
“So there is an open and honest relationship.”
Match the age of the baby
2
“What is important to be is that the child I donate to is around the same age as my current nursling.” D83
To know that the milk is valued
1
“I don’t want my milk that I spent hours expressing, lovingly for my baby, to go to someone who won’t treasure it.”
To have empathy
1
“I would want to know in order to justify my donation, to put myself in that mother’s shoes . . . to understand her need.”
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Table 5: Reasons Why Recipients Did not Use Banked Donor Milk Category of response
f
Example of response
Failed to obtain donor milk
3
“I contacted a milk bank, but they stopped responding to me after my
Rejected attempting to obtain donor milk
9
“I had looked into obtaining milk from a human milk bank . . . but it
first email. My daughter does not have a ‘medical need.’”
seemed to be only available for preterm or sick babies and even if I could obtain it, it was very expensive.” Banked milk was not acceptable/too
1
risky/recipient must know donor
“The mothers must be Muslim and is breastfeeding their children as well . . . frequent visit to the milk donor is important to keep track on their location.”
reasons why recipients had not used banked milk is presented in Table 5.
Discussion Only a Portion of Lactating Women Are Potential Milk Bank Donors Donors in this study were sharing their milk directly with other mothers, and few had had any interaction with a human milk bank. One half of the donor respondents were excluded from donating to a milk bank because they did not qualify or because there was no local milk bank. This suggests that not all lactating women can be viewed as potential bank donors. The reasons given by the remaining donor respondents for failing to donate to a bank suggest modification of the milk banking process that may assist in bank donor recruitment.
Reducing the Cost and Process Disincentive to Milk Donation Although almost all milk banks are not-for-profit organizations, the cost imposed by banks on recipient parents in some jurisdictions (e.g., North America) can be a strong disincentive to women donating milk to a milk bank. Donor respondents were affronted by the idea that milk banks could charge milk recipients a great deal of money for their gift of milk. Educating potential donors about the costs of processing banked milk might alleviate some of these concerns. In addition, fundraising to cover the expenses of recipients who cannot have the cost of banked milk borne by their hospital or health insurance might address this issue. Finally, milk banks could provide information on the proportion of their recipients who have their costs covered by their hospital or insurance so that potential donors can be reassured that few recipients are paying directly for milk. The impact of the costs involved in using banked milk
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on the willingness of potential donors to donate a milk bank deserves further investigation. The processes involved in donating to a milk bank were considered to be a barrier by many peer donor respondents who had already spent a considerable amount of time expressing milk for donation. Thus, simplification of the donation process, for example, local collection depots rather than individual shipping of milk, could make more milk available to milk banks.
Providing Information as Motivation for Donors Many donor respondents stated that they would not donate to a milk bank because they preferred to know the recipient. More than one half stated that it was important or very important for them to know why their recipient(s) needed milk. The reasons donor respondents wanted know the circumstances surrounding the need for donor milk were primarily related to ensuring that the need was genuine or understanding the situation so as to be motivated to provide milk. Obtaining milk from a milk bank requires physician assessment of infant need and so deals with the concern of donors who simply required that their milk be given to a needy infant. This may not be sufficient for donor respondents who wished to assess whether recipients had “tried hard enough” to supply their own milk to their infants. This sentiment, implies an unwillingness to do someone else’s “breastwork” (Bartlett, 2005; Stearns, 2009) if she is capable of doing it herself. It is also a judgment of the mother’s worthiness, responsibility, or goodness (Murphy, 2000). Further, some donor responses indicated that they placed a high value on their milk and wished to ensure that the recipient(s) would appreciate the worth of the milk. The value that donors place in
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their milk may partially flow from the idea that the milk is a part of the donor’s self (a concept specifically identified by some donors), and so the gift of breast milk may be perceived as a gift of the self. These concerns are unlikely to be able to be addressed by milk banks. The absence of feedback to donors about the need for and outcome of banked donor milk is a barrier to donation that could be overcome. Previous research has found that milk bank donors would like to know more about what happens to their milk after donation including who receives the milk, why the milk is needed, and why the infant’s mother is unable to provide milk (De Alencar & Seidl, 2010). Milk banks have historically followed organ donation policy in maintaining anonymity and not providing donors with information about how their milk is used. Anonymity in organ donations exists because identification of recipients might result in feelings of obligation to continue donations (Warwick, 1997). This constraint may not apply in milk donation because the milk of another can easily substitute for any individual donor. Maintenance of anonymity also protects recipients from claims by donors, whether this is likely to be an issue in milk donation is unknown. However, not all institution-facilitated milk banking preserves anonymity (e.g., Ghaly, 2012; Hsu et al., 2011) and investigating how such models manage these issues is warranted. There are logistical difficulties associated with providing donors with information about the recipients of their milk. Many milk banks pool donations so that recipients will receive milk from many donors. Furthermore, hospitals sometimes order milk from banks in anticipation of it being required so there may be some time between donation and use. Some donor respondents reported that their ability to express milk was conditional upon knowing why it was needed because this provided encouragement that was necessary for them to be able to express. In normal circumstances, the demandand-supply principle of milk synthesis means that women are capable of producing milk far in excess of that required by their infants (Daly, Owens, & Hartmann, 1993; Kent et al., 2006). However, motivation is required to engage in and sustain the work involved in milk expression. Milk expression has been identified as demanding, tedious, and stressful, requiring commitment and sacrifice over a protracted period (Avishai, 2007; Stearns, 2009). As such donors are not only donating their milk, but also their time and work and the investment
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required of them is large. No payment is made for donated milk but the milk is donated with a cost to donor and their families; breast milk can only be considered to be free if the value of women’s labor is ignored (Shaw, 2010). Although none of the donor respondents desired payment for their work or milk, there is the sense that information about their recipient’s need for their milk constitutes a reward for their work that facilitates milk donation. Thus, providing milk bank donors with greater information could make more banked donor milk available by providing donors with motivation to donate milk. This would increase the number of women able to donate and/or increase the length of time for which donors continue to donate. Information may also be considered a type of reciprocity that acknowledges the effort and giving of self that is involved in milk donation (Shaw, 2010). Donors may not require identifying information to donate to milk banks but simply greater knowledge of the need for or the use of their milk. As demonstrated by the donor respondent who changed her mind about donating to a bank after hearing of shortages, even basic information demonstrating the need for milk can change practice.
Referring Parents of Healthy Infants to Milk Banks Is not Helpful Recipient respondents had had very limited contact with milk banks, and none of them had been able to obtain banked donor milk. The infants of recipient respondents were generally healthy and without complex medical problems and so did not meet the criteria usually necessary to qualify for banked donor milk. For the recipient respondents who were unable to provide their own breast milk the choice of supplementary milk was infant formula or human milk donated by a peer. Should these experiences be typical, statements by health authorities that those needing additional human milk for their infants obtain it from a milk bank are not helpful at best and disingenuous at worst. It does not assist families in need of milk for their children to be directed to milk banks that cannot supply them with milk, nor does it assist milk banks to be inundated with requests for milk that they cannot supply.
Identification of Milk Donors Provides Safety to Islamic Milk Recipients One recipient respondent expressed a religious imperative to know her donors. Although her view
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was singular among the recipients in this study, there is reason to believe that it may be an opinion that is widespread in Muslim countries. Breast milk has religious meaning in Islam with the infant having a recognized right to breastfeed for two years including via wet nursing (Shaikh & Ahmed, 2006). However, the consumption of breast milk creates a familial relationship (milk kinship) between the woman and child and care must be taken to avoid consanguineous marriages (Parkes, 2001). Some Muslims consider that the feeding of banked donor milk to hospitalized infants does not create a milk kinship relationship (Ghaly, 2012). However, no Muslim country has a traditional milk bank (ElKhuffash & Unger, 2012). Although traditional milk banking may be unacceptable to many Muslims, changes in the process may make it permissible. The Duchess of Kent Hospital in Malaysia and Adan Hospital in Kuwait provide a modified milkbanking process in their NICUs whereby milk is not pooled and donor and recipient are introduced to one another (Ghaly, 2012; Hsu et al., 2011). This is effectively a regulated form of peer-to-peer milk sharing. The issue of milk kinship is another reason for milk banks (especially those in areas with a large Muslim population) to consider allowing for greater transparency in the milk banking process.
Peer-to-Peer Donors and Recipients and Milk Bank Donors and Recipients Are Recruited from Different Pools Women have always shared milk with one another, but the scale of the online milk-sharing networks has led to fears that this new form of milk sharing is jeopardizing the infants served by milk banks. However, concerns about shortages of banked milk have only been expressed in North America. Data on the amount of milk donated to milk banks in North America is not available, but according to the Human Milk Banking Association of North America the amount of milk dispensed by member milk banks has steadily increased from 1.2 million ounces in 2007 to 2.2 million ounces in 2011 (Personal communication, Jean Drulia, President Human Milk Banking Association of North America, May 16, 2012). Thus, it seems that milk shortages may be more a result of increased demand rather than a decreased supply. Extensive publicity about peer-to-peer milk sharing including associated discussion about milk banks may have increased awareness of banked milk and so increased the demand for banked milk (the Factiva database yielded 122 articles in print media including the names Human Milk 4 Human Babies
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Milk donated via peer sharing may be sourced largely from a different pool of donors from that of milk banks.
and Eats on Feets). Furthermore, the U.S. surgeon general’s appeal to make banked donor milk available to more infants in NICUs, may have increased the demand (U.S. Department of Health and Human Services; 2011). Regardless of the reason, the continuing growth in the need for banked donor milk requires an increased supply of donors and their milk. Thus far, peer-to-peer milk-sharing networks appear to have been viewed as a threat to traditional milk banks as a competitor for the scarce resource of donors and their milk. The data from this study suggests a different possibility, that the milk being donated via peer-to-peer sharing is predominantly sourced from a different pool of donors than that of milk banks. It seems that a large proportion of women who donate to a peer are excluded from donating to a milk bank because of their location or personal characteristics. Furthermore, it seems that it is the very nature of peer sharing, where the circumstances of recipients are known to donors, that enables women to donate and the absence of this information is a barrier to donation to a milk bank. However, there is a possibility that some of this latter group of donors might be able to be recruited to milk banks with modification of the milk banking process. It is also possible that peer-topeer milk sharing is decreasing the demand on milk banks from the population of relatively well infants served by milk sharing. The conclusions that can be drawn from this study are limited by the use of convenience sample of donors and though care was taken to recruit as diverse as sample as possible, it is unknown how representative their views and experiences are of the population of individuals involved in peer-topeer milk sharing. A further limitation of this study was that it required respondents to be sufficiently proficient in English to be able to complete the study questionnaire. This likely limited the participation of donors and recipients in countries where languages other than English predominate. Further research should be undertaken in languages other than English, in particular to explore milk sharing in Islamic countries where, as noted, the belief in milk kinship impedes the development of traditional milk banking.
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Implications for Practice Despite concerns about the safety of peer-to-peer milk sharing and its potential impact upon milk banks, it is likely that Internet-based milk-sharing networks will continue to operate. With this in mind, cooperation should be encouraged between milk banks and peer-to-peer milk-sharing networks. Peer-to-peer milk-sharing networks would benefit from the expertise and guidance of milk banks in ensuring that milk is shared as safely as possible. Milk banks would benefit from the experiences of peer-to-peer milk-sharing networks in supporting lactating women to engage in the work of expressing milk for donation. Peer-to-peer networks could also act as a conduit encouraging women who are suitable and able to donate milk to a milk bank to consider doing so. Health professionals should not direct parents in need of human milk for their infant to milk banks unless obtaining milk from such banks is a realistic possibility. Where banked donor milk is unavailable, health professionals should provide parents with evidencedbased information about the risks and benefits of other feeding options in order to enable informed decision-making (Gribble, 2012; Gribble & Hausman, 2012).
Azema, E., & Callahan, S. (2003). Breast milk donors in France: A portrait of the typical donor and the utility of milk banking in the French breastfeeding context. Journal of Human Lactation, 19(2), 199–202. Bar-Yam, N. B. (2005). Sharing breastfeeding: The experience of cross nursing among mothers in the United States. Birth Issues, 14(2), 57–63. Bartlett, A. (2005). Breastwork. Sydney, Australia: University of NSW Press. Daly, S. E., Owens, R. A., & Hartmann, P. E. (1993). The short-term synthesis and infant-regulated removal of milk in lactating women. Experimental Physiology, 78(2), 209–220. De Alencar, L. C. E., & Seidl, E. M. F. (2010). Breast milk donation and social support: Reports of women donors. Revista LatinoAmericana de Enfermagem, 18(3), 381–389. Dutton, J. (2011). Liquid gold: The booming market for human breast milk. Wired Magazine, Retrieved from http://www.wired.com/ magazine/2011/05/ff_milk/2/ El-Khuffash, A., & Unger, S. (2012). The concept of milk kinship in Islam. Journal of Human Lactation, 28(2), 125–127. Ghaly, M. (2012). Milk banks through the lens of Muslim scholars: One text in two contexts. Bioethics, 26(3), 117–127. Gribble, K. D. (2012). Biomedical ethics and peer-to-peer milk sharing. Clinical Lactation, 3(3), 109–112. Gribble, K. D., & Hausman, B. L. (2012). Milk Sharing and formula feeding: Infant feeding risks in comparative perspective? Australasian Medical Journal, 5(5), 275–283. Grøvslien, A. H., & Grønn, M. (2009). Donor milk banking and breastfeeding in Norway. Journal of Human Lactation, 25(2), 206–210. Hartmann, B. T., Pang, W. W., Keil, A. D., Hartmann, P. E., & Simmer, K. (2007). Best practice guidelines for the operation of a donor
Conclusion Concerns have been raised that milk banks and peer-to-peer milk-sharing networks are in competition with one another. However, it appears that peer-to-peer milk sharing and milk banking may largely involve different groups of women and infants. With greater transparency in the milkbanking process some peer sharing donors may choose instead to donate to a milk bank. Cooperation between milk banks and peer-to-peer milksharing networks could benefit both groups.
human milk bank in an Australian NICU. Early Human Development, 83(10), 667–673. Health Canada. (2010). Health Canada raises concerns about the use of unprocessed human milk. Retrieved from http://www.hc -sc.gc.ca/ahc-asc/media/advisories-avis/_2010/2010_202-eng .php Hsieh, H.-F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277– 1288. Hsu, H.-T., Fong, T.-V., Hassan, N. M., Wong, H.-L., Rai, J. K., & Khalid, Z. (2011). Human milk donation is an alternative to human milk bank. Breastfeeding Medicine, 7(2), 118–122. Jones, F. (2003). History of North American donor milk banking: One hundred years of progress. Journal of Human Lactation, 19(3), 313–318.
Acknowledgement The author acknowledges Professor Virginia Schmied, Dr. Kathleen Kendall-Tackett, and the anonymous reviewers who provided helpful commentary and suggestions.
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