Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study

Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick babies resident in Neonatal Intensive Care Units. This study aimed to explore the lived experience of mothers who have expressed and donated their breast milk following the loss of their infant. Seven bereaved mothers who donated milk to the Human Milk Bank in Northern Ireland were recruited. These women took part in semistructured interviews, which explored their experiences of perinatal loss and the role that expression/donation played for them in their grief. Their accounts were analysed using a qualitative interpretative phenomenological analysis (IPA) method. After transcription and analysis, three superordinate themes emerged; (1) fulfilling the mother role; (2) the power of being able to ‘Do’; (3) making good from the bad. The stories of these women reflect the independent and individual nature of grief. Each mother gained a great deal of comfort in having the ability to express milk. For some this created a physical connection to their child, for others, it created time alone to process what had happened and for all, it created a sense of autonomy and ownership in what was otherwise a very turbulent time in their lives.

Perinatal loss is often followed by grief reactions from those outside the immediate family, some of which can intensify reactions to a loss, for example, silence, communication difficulties and awkwardness (K. E. Carroll et al., 2014). Experiencing grief is an essential aspect of the healing process; mothers are encouraged by professionals to stay connected to their emotions and actively engage with their grief to find recovery. Uren and Wastell (2002) reported that a mother's capacity to find meaning following a bereavement predicted her ability to move through the grieving process and heal. In some mothers, perinatal loss has been found to elicit positive posttraumatic growth and change, this occurs when a mothers' fundamental assumptions about life are challenged and adapted (Currier et al., 2012;Tian & Solomon, 2020).

| Breast milk and its purpose
A breastfed infant receives numerous benefits regarding infant nutrition, gastrointestinal function, psychological well-being and immune development (Binns et al., 2016). Breast milk contains ingredients which support immune function and posits antioxidative properties (Martin et al., 2016).
Breast milk has all the necessary protective components and nutrients for healthy development in babies alongside the ability to decrease risk of infectious diseases (Ballard & Morrow, 2013).
Breast milk has been positively associated with both short-and long-term outcomes in the neurodevelopment of vulnerable, sick or preterm infants (Ottolini et al., 2020). The World Health Organization (2015) recommends that breastfeeding is the best nutrition for most infants during their early stages of life. Thus, if an infant is being treated within a Neonatal Intensive Care Unit (NICU), efforts are made to support and encourage new mothers in breastfeeding. However, when this is not possible hospitals will turn to alternative sources of nutrition, in most cases, donor milk provided by human milk banks (HMBs) is preferred (Hartmann et al., 2007). The amount of donor breast milk prescribed in NICUs is steadily growing (K. Carroll, 2014).

| Bereaved mothers and their breast milk
Often, mothers will continue to lactate following the death of an infant, and so are forced to decide what to do with this milk. There are options, as reported by Dickens (2020); lactation suppression (pharmacological/ nonpharmacological), lactation reduction, expression of breast milk for personal reasons and expression of breast milk with a view to donate.
Breast milk has been known to hold much value and meaning for mothers and especially those whose baby has died (Fernández-Medina et al., 2022). Welborn (2012) conducted a study investigating the experience of mothers who donated their breast milk following perinatal loss in Australia. This study found that women could fulfil some of their instincts as mothers by expressing and donating, which in turn aided the healing process. Mothers described how their lactation was a visible recognition of their move into motherhood and the act of donating gave them a tool to contemplate and process the loss of their child (Welborn, 2012).
The choice to donate breast milk is variable and personal to each mother. It has been reported that both lactation and milk donation after the loss of a baby can be seen as a way to acknowledge motherhood, and to memorialise the infant as the breast milk is directly associated with the life of the child (Cole, 2012;Layne, 2014).
In Welborn's (2012) study it was noted that for those who had nursed a sick infant in the weeks or months following birth, their breast milk became a symbol of hope and survival when the infants were alive but if they had not survived, lactation was a painful reminder of the child they lost. For those whose infant had died in utero or at birth, expressing milk was a way of transitioning and maintaining a connection with their loss.

| Rationale
Maternal grief has been shown to produce many difficult emotions (Erlandsson et al., 2011). While there are many ways grieving can be assisted, that is, having strong social support, and finding positive coping strategies, this study aims to explore mother's experience of expressing and donating breast milk within the process of grief. Considering the vast difference in breastfeeding culture between Ireland and the countries in which similar studies have been conducted it was deemed important to gain this perspective as a means of understanding the novel benefits here so that culture-specific advice and guidance could be provided that might encourage this practice in the future.
2 | METHODOLOGY 2.1 | IPA To deepen our understanding of donation behaviour within the bereaved population it is important to produce rich, descriptive data.

Key points
• Bereaved mothers can continue to fulfil their role as a mother and benefit psychologically following perinatal loss by expressing and donating breast milk for the health benefit of other babies.
• Mothers can face barriers to exploring options for donating breast milk following perinatal loss.
• Perinatal and maternity services should develop compassionate and sensitive approaches to support bereaved mothers in their grief including providing relevant information and support to express and donate breast milk.
• Increased awareness of the possible benefits of expression must be disseminated across staff teams to ensure professionals are armed with the knowledge they need to support mothers appropriately.
For this, a qualitative methodology is best suited (Kint, 2015). Given the complex and sensitive nature of the subject area and the necessity of examining the participants' meaning-making processes, IPA was deemed to be the most appropriate method of qualitative analysis.
The process of IPA is a blend of two kinds of analyses, often described as a 'double hermeneutic', interpretative and phenomenological (Smith, 2004). Interpretative analyses are informed by hermeneutics; this analysis method requires the researcher to make sense and contextualise the information gathered from the participants in a way that is psychologically minded and theoretically informed. Based on the philosophical teachings of Heidegger and Gadamer, phenomenological analysis is a focus on the experience as a phenomenon, this method of analysis requires the researcher to hear and understand the lived experience of the participants' while looking out for themes and variances to give voice to these. The melding of these two methods allows researchers to explore personal experiences in a systematic way with an idiographic focus (Smith et al., 2009). This project lends itself particularly well to this idiographic approach. It was deemed of paramount importance to capture both likeness and divergence in the participants' experience because one person's experience of grief is unlike anyone else's. This method allowed for these differences to be captured and valued. The COREQ checklist was used to structure this report to ensure that data was reported explicitly and comprehensively.

| Participants
Seven individuals were recruited for this study, within the recommended 6-10 as per Smith et al. (2009). The smaller number of participants allowed the researcher to spend more time understanding each mother's meaning-making process in detail. Creswell (2013) highlights that IPA has a focus on describing the meaning of the phenomenon in great depth and it is this which takes precedent over gaining countless points of view.
Inclusion criteria for this project were simply any mother who had chosen to donate their breast milk to the milk bank in Northern Ireland, following the bereavement of their infant.
These women were recruited with support from the HMB and were all resident in Ireland or Northern Ireland when the research took place. All participants were of White ethnic background, aged between 25 and 40, co-habiting with a partner and educated to a higher qualification level.
For four women, this loss was their first born, for two it was their second-born child and for one mother it was her third-born child. Three mothers experienced their child being resident in NICU before sadly passing away, and for four mothers they experienced an intrauterine death (or stillbirth). This meant that some of the women experienced expressing milk for their own children before their bereavement.

| Materials
A semistructured interview schedule was used, interviews were carried out on Zoom as a means of minimising risk given the impact of the COVID-19 pandemic. The conversations were recorded on an encrypted Dictaphone, files password protected and stored on a computer which the researcher had sole access. The audio files were transcribed onto password-protected Microsoft Word documents; pseudonyms were then utilised to further to protect the participant's identity.

| Recruitment
This project was approved by the Office for Research Ethics Committees Northern Ireland (ORECNI). Upon donating breast milk, women are asked by the HMB to complete screening forms. Of the bereaved mothers who accessed the service since March 2020, and who indicated on the screening form that they were interested in participating in scientific research, all were contacted by telephone by a staff member from the HMB. This phone call consisted of a brief description of the study, invitation to participate in the research, and opportunity to consent to information packs being sent out in the post. Women were given contact details of the researcher (telephone and email) in the information pack and asked to contact the team if they chose to participate.
Women were given 2 weeks to make contact; if contact had not been made, a member of the milk bank staff team provided a followup telephone call where potential participants could opt in or out of the study. If the individual then consented to their participation, contact details were passed onto the researcher. From here, an interview time convenient to the mother was arranged.

| Interviews
Interviews took place between June and September 2021. The interview schedule involved questions on the expression of milk, the role of the milk bank, staff support, relationship to the breast milk and decision-making. Participants were prompted to provide a detailed narration of their experience and encouraged to share their meaningmaking process. Every discovery at interview stage is a function of the relationship between participants and the researcher, thus, time spent eliciting compassion and sincerity was a key element of this method (DeJonckheere & Vaughn, 2019).
Much attention was paid to the participants' emotional states throughout the interviews. If a participant indicated in any way that they were feeling distressed the interview was paused and distress protocol put in place which prompted the researcher to decide whether it was appropriate to continue with the interview.
Additionally, a follow-up phone call one week after the interview WARD ET AL. | 3 of 12 was offered by the researcher as a means of checking in with those who had taken part and providing support/guidance if necessary. This was optional for participants.

| Data analysis
The process of analysing a dataset under IPA's instruction is characterised by a focus on understanding the person's lived experience. This outline was used to guide interpretation but ultimately, the author followed the research in the direction the participants initiated.
The first step required the first transcribed interview to be read and reread (Smith et al., 2009). Step 4 involved searching for connections across the emergent themes produced in the previous step; simply an attempt to see how the themes fit together within the context of the data set. This process was repeated in that order for each interview transcript separately. Upon finishing all transcribed interviews, the final stage required the researcher to look for similar patterns across cases. Data collection, transcription, analysis and write-up were carried out by the lead researcher alone. It is worth noting that in IPA there have been recent changes made regarding use of language and terms, considering as this project was conceptualised before these changes coming into play it was deemed appropriate to utilise the original recommendations.

| Researcher reflexivity
Reflexivity within qualitative research communicates the sensitivity with which data are collected by the researcher and in what way the research process might shape how this is interpreted to include personal experience and prior assumptions. The lead researcher in this project was an 'outsider' having not experienced infant loss personally. Three members of the research team identified as women and as having witnessed vicariously the devastating effects of child loss, so it could be assumed that the researchers held a particularly nurturing stance towards the participants. In terms of ontological assumptions, it is important to remember that reality is subjective and that the interpretations of the data here will have been inadvertently influenced by the researcher's perspective.

| RESULTS
The rich qualitative data provided by participants were analysed.
Three superordinate themes were identified: (1) Fulfilling the mother role; (2) the power of being able to 'Do'; and (3) turning the bad into the good. These are presented separately below, see Table 1.
T A B L E 1 Overall themes/subthemes identified from the analysis Shelly a Joan Emma Sarah a Beth a Danielle Annie a 1. Fulfilling the mother role -The need to provide for a child X X X X X X -Expression as something only a mother can do 3.1 | Fulfilling the mother role Four subthemes were identified in relation to fulfilling the mother role.

| The need to provide for a child
For the mothers in this study, the need to provide for their child was of the highest importance and related to satisfaction in motherhood.
For some, expressing and providing breast milk to their child in NICU became the focus after birth.
…well I suppose at times when (child's name) was alive it was very much focused on trying to provide his nutrition… (Joan) Here, Joan talked about how providing her son's nutrition was of highest importance. In this point, the mother is illustrating her wish to provide for her baby and in being able to supply this basic need she is giving her child the best chance at survival.
Emma highlighted the loss of her imagined future. This was Emma's second child and having successfully breastfed her first she had hoped to experience this again. Emma remembers the difficult parts of parenting, and how she used to find this tedious, yet in being denied this now, she longs for these moments. Dani highlighted the unique bonding experience that breastfeeding your child brings and how the lack of this added to the loss that she was faced with in the absence of her child. As another experienced mother, Dani recalled the pleasure she felt breastfeeding her previous child and so this loss felt even more pertinent.
…and that was the one thing I was thinking all along was,

| To be of purpose
The need to find purpose in our lives is intrinsic to our emotional well-being. We feel good when we achieve, and demanding work brings with it satisfaction (Schaefer et al., 2013). For these mothers, the maternity leave they had imagined was sadly replaced with either immediate mourning or stress-filled days spent in hospital. Expression was used as a way to structure these days, bringing with it containment as well as providing a space to feel of importance.
The helplessness that is faced by a mother when an infant is admitted to hospital can be overwhelming, these mothers described how they felt they had a lack of power to create change. By producing breast milk used to nourish her sick child, Sarah was able to create a positive dialogue with herself. She described here a sense of achievement in doing this.

| Altruistic behavior (as secondary)
Donation behavior is very intricately linked to the idea of altruism. As is clear from the accounts so far, donation was not the motivation for most of the mothers in this project. It did however play a role in decision-making.
Shelly drew attention to her concern for others, and how her ability to be of help permitted her to feel good. Shelly also displayed positive perspective taking here, something that was present throughout many of the mothers' stories. When experiencing hardship it can help for us to see ourselves as fortunate, Shelly used accounts of other mothers' misfortune to help her come to terms with her own situation.
Yea, it was helpful that I was doing something for someone else, you know, and emm… and I like, a lot of the mum's have problems with breastmilk and so you know, so I was lucky that it did come in… (Shelly) Beth expressed milk with the sole intention of feeding her child and ensuring a good supply was established, highlighting again the maternal need to provide. The milk that was not for her baby lost its significance; donation was used simply to avoid waste. The ability to separate this could be seen as protective in the sense that it was easier to part with milk that has no sentimental value, whereas if an attachment was present, it may have felt like another loss.

| Taking back control
As previously mentioned, all the women in this study felt a sense of powerlessness and lack of control at having been thrust into their situations. Anxiety is often born in the absence of control (Mandler & Watson, 1966) and thus, it is a natural response to seek control as a way of mitigating anxiety.
Shelly painted a vivid picture, conjuring images of a desperate mother by a child's bedside longing to provide aid but being unable to do so. What Shelly and all the women in this project have done is given themselves a method with which to assist and thus exert some control over the situation.
…like when your baby's in ICU you feel completely helpless it's literally, you're just sitting there looking at them you know there's nothing you can do to help them so that's why I found the breastmilk, the breast pumping was the one little thing I could actually do… (Shelly) We get a sense that the women felt as though they had little control over their lives at these points, they were searching for something they could manipulate. Their ability to express breast milk became the vessel through which they could do this which helped them manage their otherwise chaotic day-to-day, as Joan highlighted, a choice in a world that felt choiceless.  Shelly touched on the immense effect that her child's death had on her. She referenced her heartbreak and specifically how this was still ever present. Being able to donate her breast milk was a small thing to do in the grand scheme of her grief but something she simply had to do.
…because I was absolutely heartbroken you know, and still am, you know it's… But as I said like, I had all the milk there like I had to like, I couldn't… I didn't have the heart to you know… I had to do something with it. (Shelly) Joan depicted a need to find a positive in her situation. She communicated that this was a constant thought in her mind and that she felt a pressure to channel her energy into something constructive. It appeared as though Joan had been proactive on her journey and she demonstrated an optimistic mindset. … and it just like I said brings positivity into a really traumatic situation. (Emma) Dani was one mother who enjoyed the physical act of expressing, she shared this experience with her family and as a unit they used it to grieve the loss of the infant. For Dani, expression brought positivity to her days. Her analogy depicts a very real image of a mother overridden with grief. What she tells us here is not that this was never present, but that during expression she was freed from this grief for a finite amount of time.
And I was kind of conscious that if I did, if it was making me upset every time I was pumping, if I was filling the bottles with tears more than milk, then that was never going to be a good thing for me, em… for my mental health. But I knew that… I didn't get to that stage ever thankfully it was just a… I enjoyed doing it… (Dani) 4 | DISCUSSION

| Summary
An American novelist once wrote; 'sometimes the strength of motherhood is greater than natural laws' (Kingsolver, 2020). This study summarises the accounts of seven women who were faced with unimaginable pain in grief. Through their stories, they shared their intimate experiences of motherhood during a time of suffering, and how they used being a mother as a mechanism to carry on. When faced with grief, they used their ability to provide through expression as a way to cope. The power of being able to do something gave WARD ET AL.
them a sense of control in a world where they didn't have any.
Expression created structure, and routine which afforded them with a feeling of autonomy and containment. For the majority of the women, the wish to create something positive from their experience motivated them to keep going through difficult days and nights, it gave them space to foster hope for the future and time to process the magnitude of what was going on around them.

| Interpretations
'To be a mother' was of utmost importance to the women in this project, they exhibited a visceral urge to fulfil the varying roles associated with motherhood. The 'motherhood myth' is a concept that has been examined in recent years, a societal pressure which poses that mothers' are solely responsible for the development and wellbeing of their children, often leading to maternal guilt when mothers don't meet this high standard (Constantinou et al., 2021).
There are many ways in which a mother might fulfil this role, for lots of women this can be in the form of providing food, warmth, or physical affection; for the mothers here, their provision was encapsulated in their breast milk. With breast milk being the most natural and age-old form of provision from mother to child, this act feels instinctive. While much breastfeeding literature focuses on the physiological benefits of breastfeeding, it is more recently acknowledged that this also satisfies social and psychological nourishment for both mothers and babies (Dykes & Flacking, 2010), creating that 'feel good' and making space for attachment bonds to form.
The gift of producing breast milk is parallel to that of the ability to bear children. Within the Irish culture when a woman becomes pregnant, the excitement and anticipation is focused on the manifestation of the unborn child (Gallegos et al., 2020), with little emphasis placed on lactation and its upcoming role. For these women, when they did not meet their imagined future of being with their child, breast milk stepped in to fill this space. Expression appeared to go some way in bridging the gap between expectant and realised motherhood.
Finding purpose in life predicts both longevity and good health (Steptoe et al., 2015). The ability to find meaning, most particularly when faced with challenges is an important mechanism for resilience, and thus finding purpose can be a significant predictor for better emotional recovery following trauma (Schaefer et al., 2013). Here, expression brought purpose, meaning and structure. An essential element of this was in the sense of control that these women gained.
Correlations between control and anxiety are well-known, where actual or appraised lack of control leads to increased anxiety (Mandler & Watson, 1966;Watson, 1967). Taking control by expressing and donating their breast milk consequently gave these women ownership, and reduced their experience of anxiety.
This research was exploratory in the sense that it hoped to gain an understanding of how mothers used their donating behaviour in grief. Our expectations of this research were focused on that of understanding how women experienced perinatal loss and how they sought comfort. Previous research by Welborn (2012) highlighted that bereaved mothers' exhibit a need to nurture. Our research compliments this as well as providing an interesting paradox; if someone carried out an act of altruism and later explained that this was to benefit themselves, could it really be described as altruistic?
Prosocial behaviour, or altruism, refers to acting for the benefit of another with a cost to the individual fulfilling the act of giving (Diacon, 2014). Each of the women in this study discussed the act of donating as important and that it brought with it a sense of achievement and pride. In their accounts, while the idea of helping other mothers and sick babies was used as a motivator, these women were clear to differentiate that this was secondary to their own personal gain.
Described by one participant as 'unapologetic selfishness', the idea of making choices that essentially served themselves was a regular theme through the interviews and could be easily reframed as self-compassion. Research by Vara and Thimm (2020) found that low rates of self-compassion in bereaved individuals led to an increased severity of complicated grief symptoms. This led us to believe that by honouring their own needs, these women helped to reduce the psychological distress of their grief, even if only for the short time period that they expressed.
Research tells us that trust is possible only in an effective therapeutic relationship (Fonagy & Allison, 2014). The women in this study exhibited great openness in their accounts which told us that they felt safe, credit can be given here to the researcher-participant relationship. Utilising the interview as a space to tell their story was pertinent in all the mother's accounts. In line with Kauffman's (2013) teachings that the process of grieving involves storytelling, reminiscing and recreating meaning, these women engaged in this simply through participating in this project.

| Limitations
The women in this study were homogenous in nature, limiting transferability; all being White women aged 25-40 and residing in Ireland or Northern Ireland. While this could be seen as a limitation, it is important to note that this is representative of the breastfeeding population within Ireland. The virtual method of data collection may also be recognised as a limitation here.
Each of these mothers were supported by their partners, extended family, friends and occasionally accommodating midwifery staff. This care afforded them with the luxury of time, and positive affirmations surrounding their decision to express their breast milk.
With many child-bearing women in differing personal circumstances and with ever-present discrepancies within the health care systems, we cannot assume that all women will be supported in this way. The sensitive nature of perinatal loss requires much care and consideration, and we advise exercising caution on encouraging mothers to do something that may feel unnatural to them especially if the necessary supports are not in place.
Another factor to consider was the presence of COVID-19; all the mothers experienced the effects of COVID-19 on their journeys through the care systems. Their experience of both perinatal sickness and grief was shaped by COVID-19 and its restrictions. In terms of the research itself, all interviews were conducted virtually which meant that the researcher needed to exercise increased caution with the interview style. The inability to be physically present with the participants meant that more attention needed to be paid to the wellbeing of these mothers. Despite this, the distress protocol did not need to be utilised with the women showing incredible strength and resilience throughout their interviews.

| Recommendations
This study highlighted the increased need for informed decisionmaking regarding lactation after perinatal loss. It is recommended that when a mother experiences a perinatal loss she is given all the relevant information regarding her production of milk and the options available to her. This research points out that for these women, expression served as a powerful tool in helping them process the sickness/death of their child and so it can be assumed that this could be beneficial to many more women in the future.
This responsibility lies with health care staff, and so increased awareness of the possible benefits of expression must be disseminated across staff teams to ensure professionals are armed with the knowledge they need to support mothers appropriately. An essential element of this is the need for more open, compassionate, and sensitive conversations between staff and mothers. It is not an arena for judgement, only kindness and support. Many staff members report feeling unequipped to have these conversations, however contrary to belief they require no great skill only compassion and human understanding. Ultimately, the decision to express/donate is individual to each woman, and this should be respected above all. By providing a nonpersuasive, informative and safe space, we can enable women to make a decision that is right for them.
This research project is the first of its kind to take place in the United Kingdom/Ireland. The analysis hinted that there may be differences in the experience of expressing breast milk to nurture a sick child versus expressing following the death of a child. Additional research exploring this would be beneficial and further our understanding of the subject area.

| CONCLUSION
This study was important in highlighting the increased need to recognise lactation following perinatal loss as a significant factor in a mother's grief. Expression of breast milk played a powerful and positive role for all the participants in this study. Mothers require support from health care staff to be armoured with the necessary information to make informed decisions following perinatal loss. For the women in this project, the expression and donation of breast milk was a healing ritual that allowed them to at least partially fulfil their mothering role, be of importance and create positive associations with their loss. The time and energy spent honouring their infant in this way was essential in the acceptance and sense-making process following their bereavement and allowed for the integration of this loss into their lives and new identity.

AUTHOR CONTRIBUTIONS
Gráinne Ward and Nicola Doherty conceived the idea presented in this project. Gráinne Ward developed the protocol, conducted the data collection and performed the analysis. Pauline Adair verified the analytical methods and supervised the findings of this work. Nicola Doherty supervised the clinical reflections pertinent in this project.
All authors contributed to the final manuscript by providing guidance and feedback.

CONFLICTS OF INTEREST
There are no conflicts of interest in this project. The study was completed as part of a clinical doctorate psychology programme and the research was undertaken in order to improve the field of research in perinatal psychology. The research team were not paid to complete this project outside of their salaries.

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.