Study population

A total of 566 parents responded to the survey. Seventy responses were incomplete and therefore were excluded from the analysis for the following reasons: declined consent (n = 1), no questions answered (n = 6) and incomplete responses (n = 63). Therefore, a total of 496 responses were included in the final analysis.

A total of 283 HP responded to the survey. Fifty-one responses were incomplete and therefore were excluded from the analysis for the following reasons: unsubmitted (n = 39), no questions answered (n = 3), declined consent (n = 1) and incomplete responses (n = 8). Therefore, 232 HP responses were included in the final analysis.

Demographic details of parents, infants and HPs are shown in Table 1. Of the parents who responded to the survey (n = 496), the majority were aged between 30 and 39 years (64%) and were of NZ/European descent (76%). Participants of Māori decent (Indigenous people of NZ) constituted 7.6% of respondents and most respondents were from the North Island of NZ (72%). Infants’ age at survey completion was evenly distributed and majority were girls (55%). Most infants were born in hospital (82%) and required postnatal care of some form (59%), most often on the postnatal ward (30%).

Among the HP who responded to the survey (n = 232), almost all (98%) were female and of NZ/European descent (69%), aged 40 or above (65%) and with 15 or more years of experience working in neonatal health (51%). Most were midwives (44%) working within a governmental organisation such as a district health board (58%) and practising across a range of primary (32%), secondary (21%) and tertiary (26%) levels of care.

Involvement with human milk donation

Details of parents’ experiences with HM donation are shown in Table 2. Over half (52%) had donated HM or had received DHM during their infant’s hospital stay (12%) or following discharge from the hospital (13%). Some parents wished they had been involved with HM donation, but it was not available to them (14%, of which 3 in 4 were located in the North Island of NZ). Most donations were informally organised between individuals (family/friends, 52%) or facilitated through hospital staff (22%).

Table 2 Feeding experiences reported by parents

86% of HP reported that DHM was available in their workplace and HM donations were most often (39%) organised via individual arrangements (family/friends/internet/social media), with only 20% of DHM obtained via HM banks (Table 3). No significant association was found between the availability of DHM and the type of organisation that the HP worked (test statistic [t] = 5.2, p = 0.13; data not shown). Highest rates of formal HM donation were reported for district health boards with established HM banks (Canterbury: 92%; Midcentral: 78%, and Capital & Coast: 67%). In contrast, HM donation across Waikato (77%), Hawke’s Bay (87%) and Hutt (75%) were most reliant on informal arrangements facilitated by hospital staff.

Table 3 Donor human milk availability reported by health professionalsDonor human milk processing

Details on parental and HP management of DHM are shown in Table 4. Prior to DHM exchanges, parents most commonly undertook lifestyle (i.e., smoking status, medication, drug and alcohol intake, 44%) and serological (i.e., CMV, HIV, Hepatitis C or B 30%) screening processes (Table 4). Parents reported most DHM obtained via informal milk sharing was not pasteurised prior to the DHM exchange (60%). Among those who reported DHM was pasteurised by a human milk bank prior to infant consumption (15%), infants born in the South Island of NZ more frequently received pasteurised milk than infants born in the North Island of NZ (37.2% vs. 11%, t = 37.1, p < 0.01). Some parents reported home-pasteurisation was undertaken by the donor or recipient parent (3%), and the majority described scalding the milk or using a water bath for various periods of time.

Table 4 Management of donor human milk

Among HP, the majority reported that serological (38%) and lifestyle (36%) screening were undertaken prior to the distribution of DHM (Table 4). HP working within a governmental organisation (district health boards or community paediatric service) more frequently undertook three screening processes (27%) than those who worked for non-governmental organisations/charities/trusts (14%) and private care/self-employed (6.5%, t = 15.5, p = 0.04).

Pasteurisation of DHM was reported by almost 30% of HP and was more frequent among those working in the South compared to North Island of NZ (73% vs. 27%, respectively, X2 = 11, p = < 0.01), but did not differ among organisations (t = 4.7, p = 0.19). Additionally, nutritional composition of DHM was often not analysed (69%).

Donor human milk utilisation

Most parents reported using DHM multiple times daily to feed their infant (76%), and the duration of DHM use varied for four weeks or longer (42.9%) or for under one week (28.9%). The duration of DHM use was significantly associated with the geographical region in which the infant was born (t = 8.6, p = 0.03, data not shown), with infants born in the North Island more frequently receiving DHM for four weeks or longer (52%) compared to infants born in the South Island (29.2%). Among donors, donations were often a one-off donation (43%, Table 2).

HP were asked which criteria were used in their workplace for the provision of DHM and could select multiple answers. Most (53%) reported that four or fewer criteria were used to determine which infants received DHM and that DHM was commonly used for full-term (72%), early term (65%) and late preterm (58.2%) infants. There was a significant association between the level of care for which the HP worked and the criteria used to allocate DHM (Table 5), with very low birthweight infants more frequently receiving DHM when being cared for under tertiary or secondary levels of care (p = 0.02), and preterm infants when being cared for under secondary level of care (p < 0.001).

Table 5 Proportion of respondents reporting which categories of infants receive donor human milk under their level of care

The frequency of DHM usage was variable, with almost 40% of HP reporting using DHM within their workplace daily or weekly, 28% fortnightly or monthly, and 28% rarely (Table 3). Almost half (48%) of all HP stated that they often would like to use DHM to feed their patients; however, they are unable to due to limited availability. DHM utilisation was 2.3 times more frequently available at district health boards located in the South Island than those in the North Island (87% vs. 37%, respectively, p = < 0.01, data not shown).

Human milk donation expenses

Parents reported that costs associated with the HM donation arrangements (e.g., screening, pumping material, transport) were frequently covered by the donor (37.5%) or recipient parent (29%, Table 4). Of those who selected ‘other’ (15%), the majority of costs were shared between the donor and recipient parents, or partially covered with support from charities, healthcare system or a HM bank (data not shown).

HP reported that the associated expenses of HM donation (e.g., screening, pasteurisation, nutritional composition assessment) were most frequently covered by the healthcare system (39%). HP working under a district health board or community paediatric service frequently reported that expenses were covered by the healthcare system (44%), while those working privately or self-employed reported costs were covered by the donor and/or parent of the receiving infant (32%, data not shown).

Experience and opinions with use of donor human milk

Overall, almost all parents (98%) and HP (98%) supported the use of DHM in hospitals. Support for the use of DHM in the community was more common among parents (92%) than HP (87%), yet not statistically different (Fig. 1).

Fig. 1

Overall parental (n = 454) and health professional (n = 218) support for the use of donor human milk in hospital and in the community (informal milk sharing). Figures are presented as percentage

Most parents received some support from a lactation expert (e.g., lactation consultant, midwife, or lead maternity carer) regarding initiating or maintaining breastfeeding (85%, Table 2), with overall high levels of satisfaction with their breastfeeding experience (Fig. 2). However, some (25%) reported being neutral, dissatisfied or extremely dissatisfied with their breastfeeding experience, often as a result of their infant or themselves having difficulties breastfeeding (60%).

Fig. 2

Level of satisfaction with breastfeeding experiences (parents, n = 494) and human milk donation (donors, n = 170). Figures are presented as percentage of responses

Most donors were satisfied with their HM donation experience (90%, Fig. 2). Among those who were dissatisfied or neutral with their HM donation experience (10%), some reported that a lack of structure made donating milk cumbersome and time-consuming. Some HM donors also reported feeling they did not receive adequate information or support to donate their milk effectively (n = 6) or having poor experiences due to feeling pressured to continue donating (n = 2), having their milk rejected by HM banks (n = 4) and the feeling the burden of obtaining HM donations and paying for resources (n = 2).

Insights of human milk donation practices in New Zealand

The respondents were asked how they felt HM donation in NZ could be improved and what risks and benefits they perceived the practice might have for the donor and for the infant. Identified codes and themes are shown in Figs. 3 and 4.

Fig. 3

Codes and themes reflecting parents’ perceptions on current human milk donation practices and the potential risks and benefits of informal human milk donation for both infants and donors

Fig. 4

Codes and themes reflecting health professionals’ perceptions on current human milk donation practices and the potential risks and benefits of informal human milk donation for both infants and donors

Improvements to current informal human milk donation practices

A total of 428 parents (86%) and 173 HP (72%) provided insights into how current informal HM donation practices could be improved. Four main themes emerged from the responses provided: (a) access; (b) wider knowledge; (c) reduce costs, and (d) guidelines, (Figs. 3 and 4).

a)

Access

Both parents and HP felt that equitable access to DHM for all infants, irrespective of age and health status, would improve current HM donation practices, improve safety and increase parents’ participation in the practice. Parents felt that access to community- and hospital-based HM banks may also provide a “more structured arrangement”, enabling a “quick” and “efficient” exchange of HM. Furthermore, some parents shared their experiences of feeling “cut off” from accessing DHM due to limited HM bank supply, leaving them with no choice but to feed with infant formula.

b)

Wider knowledge

Many respondents highlighted the need for more “awareness”, “information”, “education”, “advertising” and “encouragement” for donating and receiving DHM. Some respondents stated they wished they had known of HM donation earlier to avoid feeding with infant formula. Antenatal classes or during the in-hospital postpartum period were suggested as places to provide awareness about HM donation. Additionally, respondents expressed their desire to see DHM normalised and made commonplace, taking priority over infant formula as a first-line option of supplementation of mothers’ milk.

c)

Reduce costs

By using words such as “available” or “accessible”, HP identified that mitigation of costs would inevitably make DHM use more attainable. HP and parents agreed that reducing costs through funding for screening, pasteurisation, transport or more local DHM drop-off/pick-up locations may increase the safety and accessibility for families seeking DHM.

d)

Guidelines

Survey respondents voiced the need for a more systematic process to donate and/or receive DHM. Parents felt that the current system of informal HM donation feels “haphazard” and “clandestine,” making a “long and drawn-out process” to exchange HM. Some HP reflected on the lack of standardised pathways for informal HM donation which subsequently influenced their ability to safely facilitate the use of donor HM. Both parents and HP felt that establishing guidelines for HM donation would be beneficial for “safe” and “easy” exchange of DHM.

Potential benefits of donor human milk for the infant

A total of 497 parents (90.5%) and 193 HP (80%) provided their views about what are the perceived benefits of using DHM for the infant and three main themes emerged: (a) health benefits; (b) species-specific nutrition, and (c) prioritise HM feeding, (Figs. 3 and 4).

a)

Health benefits

Respondents commonly felt that informal milk sharing was beneficial to infant’s health, including a positive effect on infants’ microbiome/gut, immune system, and with the potential to reduce the risk of short- (necrotising enterocolitis, infection) and long- (diabetes, neurodevelopment, asthma, obesity, eczema) term morbidity compared to infant formula feeding.

b)

Prioritise human milk feeding

Many parents highlighted that DHM provided an opportunity to feed the infant exclusively HM instead of infant formula, suggesting it was “better alternative than formula” and contained a wide range of components that infant formula “will never be able to imitate”. By using words such as “choice”, “opportunity”, “option”, “alternative” and “preference”, parents demonstrated their perceptions that DHM widens the potential feeding option for infants and can help some parents attain their goal of avoiding the “use of” or “exposure to” infant formula. Similarly, many HP felt that HM donation provided a gateway to HM feeding through “helping”, “supporting”, “encouraging” or “promoting” parents in their journey of breastfeeding establishment and continuation.

c)

Species-specific nutrition

Respondents felt that DHM was a physiologically suitable feeding choice for infants, providing infants with “natural”, “optimal” or “perfect” “species-specific” nutrition.

Potential risks of donor human milk for the infant

A total of 441 parents (89%) and 194 (81%) HP reflected on what could be the potential risks of current HM donation practices for the infant and three main themes emerged: (a) contamination; (b) infant illness; and (c) unknown composition, (Figs. 3 and 4).

a)

Contamination

Many parents identified that informally obtained DHM could cause harm to an infant as a result of poor hygiene and improper handling, storage, thawing, reheating and transport. Similarly, HP felt that informal HM donations may be tainted by products (drugs, medications, alcohol), poor handling processes (collection, storage, transit), or general lack of hygiene, all of which have the potential to cause harm to the infant. Improper processes, lack of safety information/guidelines and poor health literacy could further compromise safety of DHM.

b)

Infant illness

Both parents and HP commonly identified transmission of pathogenic microbes from the donor to the ingesting infant as a risk of informal milk sharing. Some participants used words such as “low”, “potential”, “possible” or “minimal” as precursors to “risk” to emphasise that although there is a risk of microbiological transmission, the risk is not considerable. Respondents felt that the risk of infant illness was significantly lower if the milk and donor were adequately screened and the donated milk was pasteurised. Traces of allergens or unknown dietary factors were also described as having the potential to cause a harmful reaction for the ingesting infant.

c)

Unknown composition

Both parents and HP expressed concern regarding the composition of informally obtained DHM and felt that some donors may not fully disclose their medical, lifestyle or serological background. Phrases such as “undisclosed”, “unknown”, “not honest” were used in combination with lifestyle and medical factors such as pharmaceuticals, recreational drugs, alcohol, or smoking. Furthermore, some parents reported that the DHM may contain antibodies inferior to those of the infants’ mother, diurnal changes, or have a nutritional profile incompatible with their infant’s age and nutritional needs.

Potential benefits of human milk donation for the donor

A total of 267 HM donors (90%) and 190 (79%) HP provided insights into what could be potential benefits of HM donation for the donor. Three main themes emerged: (a) altruism; (b) using excess milk; and (c) benefits to total wellbeing, (Figs. 3 and 4).

a)

Altruism

Many donors discussed positive feelings associated with donating their milk to another parent and infant in need. Respondents used words such as “satisfying”, “valuable”, “soul-warming”, “pride”, “helpful”, “supporting”, “fulfilment” or “amazing” to emphasise the altruistic sentiments that came from donating milk. Some donors – especially those who had both donated and received DHM for their infant – also felt that HM donation was a way to give back to those who had previously supported them.

b)

Use excess human milk

Respondents expressed that HM donation prevented excess milk from going to waste, and instead, could be valuable to other infants in need and mitigating feelings of guilt and reluctance when needing to discard their “liquid gold”.

c)

Benefits to total wellbeing

Many physical, emotional, mental and social factors were reported to positively affect the donor’s wellbeing following HM donation. Respondents highlighted that donors’ physical health may improve by decreasing the risk of breast cancer, stimulating weight loss, relieving discomforts from engorgement and reduce morbidity (diabetes, lactational amenorrhoea, cancer and cardiovascular disease). Donors and HP also acknowledged the mental and emotional benefits of donating milk, with donors highlighting an increased sense of purpose, self-achievement, empowerment, altruism and social connections, such as developing community, friendships and sisterhood. Some HP further discussed the benefit that HM donation can have for parents who have lost their infant and on their grieving process.

Potential risks of human milk donation for the donor

A total of 257 parents (86%) and 184 HP (77%) shared their views on what could be the potential risks of HM donation for the donor, with 32% of parents stating there were no or minimal risks for the donor. However, three main themes emerged following thematic analysis: (a) negative impact on donor wellbeing; (b) vulnerability to harm; and (c) cost, (Figs. 3 and 4).

a)

Negative impact on donor wellbeing

Parents and HP felt that HM donation could present risks to a donor’s mental and physical health, such as risk of mastitis, blocked milk ducts, dehydration, excessive weight loss, nutrient depletion, nipple trauma or hyperlactation resulting from increasing their milk supply to provide milk for another infant. Respondents also highlighted that such issues may subsequently affect the donor’s ability to breastfeed their own infant. One parent shared her experience of being diagnosed with pregnancy and lactation-associated osteoporosis attributable to hyperlactation, culminating in fractures. Furthermore, parents and HP recognised the effort, labour, cost and time required to pump extra milk.

b)

Vulnerability to harm

Respondents also discussed how donors may be vulnerable to blame or feelings of responsibility if the recipient infant were to become sick after consuming their donated milk, especially via informal HM donation exchanges. Furthermore, parents and HP felt that donors may also be at risk of exploitation and pressure by the parent of the recipient infant, such as pressure to continue donating or to donate more milk than they are comfortable supplying, or that it can be difficult to say no to family or friends in need.

c)

Costs

Some parents also highlighted the potential financial implications that informal HM donation may have for the donor, often attributable to serological screening, travel and resources such as a pump and milk bags, or even the additional financial burden if the recipient parent does not reimburse the donor for such costs.