Providing Lactation Care Following Stillbirth,Neonatal and Infant Death: Learning from Bereaved Parents

Abstract

Objective:

The study aimed to identify how, from the perspective of bereaved parents, hospital-based health professionals can better meet their lactation care needs.

Methods:

In-depth interviews were conducted with 17 mothers and 7 fathers bereaved by stillbirth, neonatal death, or older infant death. Participants were recruited from three large hospitals in Eastern Australia including two with human milk banks. Qualitative thematic data analysis identified bereaved parents' lactation experiences, needs, and how parents wanted lactation care to be provided.

Results:

Participants experienced lactation after infant death as hard and challenging, while at the same time they received limited lactation care. The negative impact of lactation, however, could be mediated by anticipatory guidance, assistance to make sense of lactation, support to make decisions from available lactation and breast milk management options, and support with breast care for as long as required. Bereaved parents explained lactation care was best provided by health professionals they had come to know and trust rather than by a particular professional role. Care should be provided with compassion, in a manner respectful of individual circumstances, inclusive of partners, and supplemented by quality written information. When bereaved parents felt supported to manage their lactation in a manner consistent with their unique needs, lactation for some could have a positive impact on grief.

Conclusion:

Bereaved parents have demonstrated that comprehensive lactation care is critical to their health and well-being. Such care should be more fully incorporated into hospital-based bereavement care policies and practices.

Introduction

Following late miscarriage, stillbirth, neonatal death, and infant death, many bereaved mothers may need to manage the initial onset or continuation of their lactation. Lactation following stillbirth and infant death creates a wide range of challenges for bereaved mothers concurrent with overwhelming and intense grief.^1,2 Physical challenges may include milk leakage, breast engorgement, discomfort, and pain, which, if left untreated, may lead to mastitis.^3,4 Mothers may also suffer emotional challenges, as they seek to reconcile continued lactation with the absence of a living infant.^1,2,5

Health professionals and human milk banks (HMBs) play a critical role in the provision of bereaved lactation information and support. Clinical guidelines stipulate that all bereaved mothers should be offered lactation support,⁶ and be presented with information on the option of donating milk to an HMB.^4,7,8 Guidelines on bereaved donation note that, while suppression is often assumed to be the most appropriate lactation management option, bereaved mothers may also benefit from expanded options such as donating frozen stores of milk or sustaining expression for the purpose of donation to an HMB. These understandings have been confirmed by research that has sought the perspectives and experiences of bereaved donors.^2,5,9–11

Regardless of these advancements, international research consistently reports that bereaved mothers receive limited lactation care and inadequate guidance to manage or make decisions about their lactation or breast milk,^3,12–14 with the option of milk donation remaining unavailable to many bereaved families.^15,16 In response, researchers have called for health settings to adopt evidence-based bereaved lactation care policies and practices that promote a biopsychosocial and patient-centered approach and support bereaved mothers to make informed decisions from the full array of lactation management options that may be available to them.^11,12

Changing hospital bereaved lactation care policies and practice, however, is complex. Previous research has identified that systemic and sociocultural change is required to deliver comprehensive bereaved lactation care within maternal health settings and health professionals require enhanced knowledge and guidance to confidently engage in lactation conversations with bereaved families.^11,12 Patient perspectives are critical to informing perinatal bereavement and health care practice improvements.^17,18 Many precedents exist for patients' and families' invaluable experience to be integrated into research that directly improves the safety, quality, and experience of health care services.^19,20

In this article, we draw inspiration from researchers who position patients, carers, and family members as coproducers of knowledge, and who enable patients to define problems in health care policy and practice and consider how these problems may be best resolved from a user perspective.^19,20 This article presents our study findings from in-depth interviews with bereaved parents on their lactation care needs, offering guidance to health organizations and professionals. These patient-led insights are critical for health professionals who hope to provide individualized evidence-based comprehensive lactation care.^11,12

Materials and Methods

Study design

Our study, funded by the Australian Research Council, Australian National University and Newborn Intensive Care Foundation, aimed to inform the delivery of bereaved lactation care in maternity, bereavement, and milk banking services. The study was supported by a Stakeholder Advisory Group (SAG)—comprising medical, lactation, and infant bereavement specialists and a mother with a lived experience of infant bereavement—who provided specialist advice and assistance to researchers.

To gather a multiperspective account of contemporary bereaved lactation care, researchers conducted an international literature review, a Directed Qualitative Content Analysis of Australian health care organizations' websites,¹⁶ and engaged in focus groups and interviews with 114 Australian hospital-based health professionals and HMB staff.¹² Researchers then conducted in-depth interviews with bereaved mothers and their partners.^5,21 The findings from these bereaved parent interviews are the focus of this article.

Bereaved parent interviews were designed to be sensitive to the needs of participants and consistent with best practice in grief scholarship.^22–24 Researchers conducting the study were experienced in conducting qualitative studies on hospital-based care and grief and carefully observed participants' comfort during data collection. Invited participants were able to access anonymous support from infant bereavement counselors before or after interviews. Ethics approval was provided by the Human Research Ethics Committee (HREC) or Research Governance Office of participating hospitals and by the researchers' university HREC. The primary HREC for the study was the ACT Health (2018.ETH.00190).

Setting and participants

SAG members employed at three large tertiary hospitals across eastern Australia, including two with an on-site HMB, identified eligible mothers from hospital patient and HMB databases. Eligible mothers included those who had experienced a stillbirth (fetal death after 20 weeks of gestation), neonatal death (first 28 days of life), or older infant death (1–12 months) in the last 24 months. Mothers were excluded if they had experienced their bereavement within the last 3 months. Eligible mothers were sent an invitation letter from the hospital and those wishing to opt-in to the study contacted the researcher directly to provide written consent.

Data collection

Interviews with bereaved mothers were conducted by one of two researchers (D.N.C. and K.C.) in 2019 and 2020. Interviews took place between 3.5 and 24 months since the time of infant death, with the average time being 13.7 months. Following interviews, we sought permission from mothers to invite their partners to participate in the study. Due to restrictions imposed by COVID-19, this option was only available at two of the hospital recruitment sites. These interviews were conducted in 2020 by either a male research assistant or one of the female researchers (S.C. or D.N.C.).

Parents chose the mode of engagement (Table 1) and time and location of their interview. One couple chose to engage in a joint interview. One mother and one father required an interpreter for their interview. Interviews lasted approximately one and a half hours and covered key topics exploring parents' experiences of lactation after infant death and their perspectives on lactation care required (Table 2). Interviews were conversational in style, allowing the researcher to “sit alongside” bereaved parents to support them to share as much of their experience as they wanted.²⁵

Table 1.

Choice of Interview Mode for Bereaved Mother Participants and Their Partners

	Bereaved mother	Bereaved mother's partner
Interview mode
Face-to-face	6	4
Phone	6	1
Videoconference (zoom)	4	2
Written response	1	-
Total	17	7

Table 2.

Interview Guide for Bereaved Parents

Topic for discussion	Starting points or questions for discussion
General information about participant and family	Collect demographic information and gain rapport by learning about them and their family
Pregnancy	Preexisting knowledge and attitudes toward parenthood
Pregnancy	Preexisting knowledge and attitudes toward breastfeeding
The birth, life, and death of their infant	Share as much or as little of the story of your infant's birth, life, and/or death as you would like to
Lactation experiences	Any experiences of lactation or infant feeding before infant death
	Any lactation experiences following infant death
	Any particular significance or meanings attached to these experiences
Lactation care received	Lactation or infant feeding support received before infant death
	What support was provided to suppress, express, or donate breast milk after infant death?
	How were decisions made in regard to lactation, infant feeding, and lactation and breast milk management?
	Did you seek out lactation information yourself (perhaps online)?
If donated: bereaved breast milk donation experiences	How did you come to donate breast milk following loss?
If donated: bereaved breast milk donation experiences	What were the bereaved donation process and experience like for you and your family?
Lactation care required	What care would you have liked to have received and how can lactation care and support be improved?
Lactation care options	Which lactation management options best support bereaved mothers?
Lactation care options	Should all lactation management options be provided to all families?
Reflections and learnings about significant loss	How did your lactation experiences fit in with grieving the loss of your infant?
Reflections and learnings about significant loss	Is there anything you would like to share about what you have learnt about yourself, or more generally, when thinking about how people can adapt to living after a significant loss?
Any last thoughts	Anything else they would like to add that is important for us or health professionals to know

Data analysis

Each interview was audio recorded and transcribed for analysis. Thematic data analysis, assisted by NVIVO coding software,²⁶ was separately applied to the bereaved mother and partner data sets. For each data set, researchers commenced with a set of deductive themes based on key interview topics. Inductive coding was then applied, with each transcript read in full by two researchers, before one researcher created a hierarchical coding framework, developing new themes and subthemes based on the emerging data.²⁷ A coding document outlining key findings was developed for each data set, with final themes being confirmed, discarded, and recategorized through discussion between all researchers.

Results

Demographics of study participants

Seventeen bereaved mothers and seven of their partners participated in the study. Approximately half of participants' deceased infants were stillborn, 40% died in the neonatal period, and 10% were aged between 29 days and 1 year at time of death. Four study mothers had twin infants, with two having a surviving twin at the time of interview. One of the mothers' partners had experienced the death of twin infants. All partners self-identified as male and from herein will be referred to as “bereaved fathers.” The characteristics of bereaved mother and father study participants are presented in Table 3 and 4, respectively.

Table 3.

Bereaved Mother Participants' Characteristics (n = 17)

Demographic variable	Total, N = 17 (%)
Age (years)
18–24	1 (5.9)
25–31	4 (23.5)
32–38	11 (64.7)
39–45	1 (5.9)
≥46	0 (0)
Aboriginal or Torres Strait Islander
No	17 (100)
Yes	0 (0)
Primary language spoken
English	14 (82.4)
Language other than English	3 (17.6)
Religion
Christian	3 (17.6)
Catholic	5 (29.4)
Hindu	1 (5.9)
None	8 (47.1)
Marital status
Married	13 (76.5)
De facto	4 (23.5)
Single	0 (0)
LGBTQI+
No	17 (100)
Yes	0 (0)
Living children previous to infant death
No	7 (41.2)
Yes	10 (58.8)
Previous lactation experience
No	7 (41.2)
Yes	10 (58.8)
Education—highest attainment
≤Secondary	6 (35.3)
Postsecondary	1 (5.9)
University degree or above	10 (58.8)
Employment status
Working full-time hours or equivalent	10 (58.8)
Working less than full-time hours	4 (23.5)
Not in workforce	3 (17.6)

LGBTQI, lesbian, gay, bisexual, transgender, queer, intersex.

Table 4.

Bereaved Father Participants' Characteristics (n = 7)

Demographic variable	Total, N = 7 (%)
Age (years)
18–24	0 (0)
25–31	1 (14.3)
32–38	5 (71.4)
39–45	0 (0)
≥46	1 (14.3)
Aboriginal or Torres Strait Islander
No	7 (100)
Yes	0 (0)
Primary language spoken
English	5 (71.4)
Language other than English	2 (28.6)
Religion
Christian	1 (14.3)
Catholic	2 (28.6)
Hindu	0 (0)
None	4 (57.1)
Marital status
Married	5 (71.4)
De facto	2 (28.6)
Single	0 (0)
LGBTQI+
No	7 (100)
Yes	0 (0)
Living children previous to infant death
No	2 (28.6)
Yes	5 (71.4)
Education—highest attainment
≤Secondary	0 (0)
Postsecondary	2 (28.6)
University degree or above	5 (71.4)
Employment status
Working full-time hours or equivalent	7 (100)
Working less than full-time hours	0 (0)
Not in workforce	0 (0)

Parents' experiences of lactation after infant death

The lactation experiences of the bereaved mothers in our study have been extensively described elsewhere,⁵ but are briefly described here for important context before their perspectives on lactation care required are outlined in more depth. Bereaved mothers most often found lactation to be hard and overwhelming. Mothers were often shocked by how suddenly their lactation was established after infant death and the amount and duration of milk production. Eleven of the 17 mothers described experiencing breast pain, discomfort, or engorgement and eight experienced milk leakage that lasted for days, weeks, or months. Despite the range of difficulties and needs, bereaved parents reported that lactation care was limited and more than half of the study mothers felt unprepared to adequately manage their lactation.

The feelings and meanings that accompanied lactation after infant death were also diverse, ambiguous, and mutable, but rarely discussed. Most commonly, mothers believed that breast milk retained value, and that lactation was intimately connected to their deceased infant or their mothering identity. This significance influenced the varying ways mothers wanted to manage their lactation and breast milk. Although lactation management choices were often constrained, seven mothers donated milk following their infant's death. Three donated frozen stores of milk available at the time of death to an HMB, while four sustained their lactation for 2 to 6 months following infant death for the purpose of donation (one mother did this following two separate infant bereavements). One donating mother also shared milk informally, while another kept some milk to feed to a subsequent child.

Mothers who decided to donate or share milk did so with limited support from health professionals and instead often relied on their partner.

Bereaved fathers reported limited awareness of their partner's bereaved lactation and the consequent care required. Those who had partners expressing milk, however, described becoming acutely aware of their partners' lactation. Fathers sought to provide care and support to their partner in multiple ways including the following: providing emotional support, helping with breast care strategies, preparing and cleaning breast pump equipment, and assuming primary responsibility for general household management and caring for children. Bereaved partners' experiences have been discussed in more depth elsewhere.²¹

Bereaved parents stated the many challenges imposed by lactation could be mediated if health professionals provided them with comprehensive bereaved lactation care. Furthermore, if and when this care was provided, lactation could sometimes positively impact on parents' grief and meaning making. The article now turns to how bereaved parents want lactation care to be provided. Summary information is presented below, with evidentiary quotes provided in Table 5. Pseudonyms have been used to protect participant anonymity.

Table 5.

Bereaved Parents' Perspectives of Optimal Bereaved Lactation Care

Bereaved lactation care required	Critical elements of care	Quotations
(1) What care is required	Informing parents that lactation is likely to occur or will continue following infant death	“I didn't know I was going to get milk…They didn't tell me anything…and then I got a lot of milk. Like, I made so much milk. And there was no information about it…That was the worst fricken day…It was horrible…I was not good. I wasn't coping” (Maria)“Because they said, exactly, ‘you're twenty weeks, you're pretty early, you probably won't [lactate]…I certainly wasn't expecting, but I did…I remember waking up in the middle of the night and my top was soaking wet…[I was] shocked, because I didn't realise it would, yeah, leak so much!…Being my first baby, I didn't really know what to expect” (Amanda)“I remember being in the hospital still that afternoon, after [infant] passed away, and [partner] was just like, ‘My boobs are going to explode. What do I do? What do I do?’ And the nurse just sort of rolled in a pump and was just like, ‘Use the pump’….and now she [partner] was just like, ‘What do I do with this? Do I pour it down the sink?’” (Matt)
	Helping parents to make sense of lactation after infant death	“I was crying because my body was wanting to bring in milk. And I didn't feel like I could talk to anyone about it…It's like no-one wants to listen… It's kind of almost like if a health professional had brought it up with me, I would have loved that opportunity to [talk about it]” (Millie)“I remember asking, ‘I've got all this colostrum in the freezer, you know? All this hard work…the idea of going to the freezer and putting it in the bin just seemed horrendous….It was just like this amazing superfood, and I think it just seems too wasteful that it wasn't able to be used somehow” (Karen)“You don't want that milk to go to waste…That is like another thing is what we've been through is not relevant, or not important…it's so important to us” (Millie)“Well, definitely suppressing it, you know…even though it had to be done, it felt wrong. Because maybe it's just the thoughts I would have when I was by myself, it was like, ‘I wish I was holding her.’ I had a blanket with me, and I would just hold her. (crying)…‘I wish I could be feeding a baby’…It was like trying to sever yourself from something you don't want to be severed from” (Bianca)
	Supporting parents to make an informed decision about lactation and breast milk management from a full array of options available to them	“When they brought me the tablet, possibly they could have explained all of my options so I could have known, and then I could make, for me what could be the right call at that time…no-one actually spoke to me about ‘What would you like to do?’” (Madison)“It [sustained expression for purpose of donation] would definitely not have been offered had I not known about it. I think it should be offered to everyone. I think everyone should be given the full, ‘These are some of the common options, but you can choose to do whatever you want with your (milk).’” (Samantha)“It was really traumatic. I remember feeling really…probably just depressed, really, because I was pumping all this amazing milk, and I remember thinking, ‘I don't even know what I'm doing this for!’…[But, after saving and feeding milk to subsequent child:] Probably the breast milk was a huge positive card in the whole grief ridden experience, a positive that had come out of the whole thing” (Sarah)
	Supporting parents with lactation and breast milk management, including appropriate breast care	“I'd heard the word ‘mastitis' or whatever it's called that, you know, people talk about in posts on social media, but I didn't know, and I still don't really know, exactly what it is, so I kept being a bit anxious about it. What if I get mastitis? What do I do?…It was extremely painful…I hadn't actually been shown how to express any milk with my hands, so I was like, I don't want to interfere with it, so I just completely left it.” (Rosie)“You are really just left alone to sort of assume you know what you are doing…It's pretty sad that there's no option for help offered” (Sarah)“I was postnatal, so I was bleeding and I had pain, and my milk came in and how was I going to manage that?…I wasn't expressing…although I wish I would have just expressed a little bit on – there was one night in particular they were just so painful…I thought, I just need to persevere. I was just afraid of making more, and making it last longer” (Bianca)
(2) How care should be provided	Inclusive of partners and other significant family members	“I, as a dad, didn't think about the whole lactation issue…it's probably important to say well, to the mum, ‘there will be lactation’, and this and that, but also include the dad, and say what you can do to support your partner in this process…it shouldn't just be the mother's issue” (Louis)“He sat with me every time…I was the one with the milk, but he was the one washing the pump and sterilising it, and getting it ready for me when I was crying. I couldn't have done it if it was just me. This whole thing, I couldn't do without him. So. Yeah. It was from my boobs, but it was from us!” (Maria)“It was an opportunity to donate the milk to help other people keeping them alive and basically keeping a memorial to [infant] at the same time…knowing that we would be helping others, that was a healing process” (Sebastien)
	Respecting diversity and responsive to individual needs	“We believe that we all come here to this world, whether it's a long life or a short life, for a mission…her [deceased infant] mission was to donate the milk to other babies…at 32 weeks of gestation she accomplished so much in her life, really. Donating milk to other children!” (Laura)“They put [living twin infant] on for her first feed, and I had [deceased infant] in my arms, too, and I realised that's the only time (crying) I held them both at the same time. So…it was a really beautiful moment…it became really significant” (Ashley)
	Supported by written resources	“I didn't have a leaflet about lactation when I went home, and really, the whole lactation thing kicked in when I was at home, so it was like another kick in the teeth when I got home” (Millie)“You're not thinking about your milk when your baby's just died. Like, you're not thinking about it, and you wouldn't think about it, and I just think if you had the information there, at least you'd have something to…when you felt ready you could look at it and have an idea of what you should do, or what you can do.” (Christine)“[I would like lactation information] In written form, to be honest, because in that way it's like, ‘Here's the information, but it's not being forced on you if you don't want it, or you don't have to sit there and listen to it if you're not.’ If it's there, you can go to it, ‘OK, I know this,’ but if you don't want to look at it, you can just push it to the side and not think about it.” (Amanda)
(3) When care is required	Anticipatory information and guidance where possible	“I think it [lactation care information] needs to be told, like, straight away, for them to be able to know what to do, if that makes sense.” (Lily)“I think information about what happens with milk production if your baby dies should be available to read or understand before your baby dies, it would be easier to understand and think about what could happen before it dies.” (Kylie)
	Incremental support offered over time that is responsive to changing circumstances and needs	“I know there's a process and I know things have to happen, but I think I should be able to decide this in my own time” (Georgia)“I think if it's approached in a gentle way…[having] space at the time, and I think giving us options…it was really nice to feel like doors weren't being closed” (Karen)
	Continual access to support while in hospital and after returning home	“If I hadn't had the continuity that I did have, it would have been a lot harder, just having to explain things over and over again. Also, because I had the same midwife right through most of the pregnancy, I didn't have to explain [that I wanted to sustain lactation and donating the milk]” (Samantha)“It's good that they tell you stuff in hospital, but you can't digest it. It comes later, particularly when your milk's coming in, when you go home. That's, I think, the next – you need another touch base there” (Millie)
(4) Who should provide care	A health professional the family has come to know and trust	“To me, yeah, like I said [the best person to provide care is probably] nurses – but once again, it depends on the relationship you have with that nurse. Like I said, there's different nurses that you relate to and you don't relate to” (Georgia)“I guess it would depend on the person, I actually think, to be honest, in our situation the social worker I spoke to was better than the lactation consultant at the discussion” (Christine)
	A health professional with expert knowledge may be required	“I found once [infant] had died, the hospital just disappeared. My local service. And given that they had been such a huge part of my life, the months and months leading up to the point – it was literally another loss…I still had all of the new mum issues, plus dealing with the grief of my baby having died, and all of a sudden that entire support network just disappeared…[The HMB Manager] was great, actually. She was an extra person that I could have a cry down the phone to, which was lovely, and she obviously has supported a few mums that have decided to donate post the death of their baby, and she got it! She understood better than a lot of other people” (Samantha)“The relationship with the milk bank was good to start with, but then it just got strained, so we would have liked that to have been easier, for them to acknowledge how much milk she'd given…[and] there should have been easier ways for it [transport of milk] to happen” (Andrew)

HMB, human milk bank.

Essential elements of bereaved lactation care

Informing parents that lactation is likely to occur (or will continue) following infant death

Most mothers reported being informed they could expect lactation to either occur or continue following a miscarriage, stillbirth, or neonatal death. Some mothers (such as Maria and Amanda, Table 5), however, who were blindsided by the sudden onset of lactation, experienced lactation as traumatic and did not know how to manage lactation or enact breast care. These mothers emphasized that health professionals must be clear and forthright when discussing the possibility of bereaved lactation (Amanda Table 5).

Mothers with established lactation at the time of infant death seemed to be among those least likely to receive lactation care. These parents stated that they needed to know their milk would not quickly subside without active intervention and advised it should not be assumed they know how to manage lactation following loss (Matt, Table 5).

Helping parents to make sense of lactation after infant death

The lactation care bereaved parents received rarely included any recognition of the variable biopsychosocial significance of lactation or breast milk. Parents (such as Millie, Table 5) wanted more support to make sense of the many, often confusing, emotions that accompanied bereaved lactation and wanted health professionals to actively engage and listen carefully in conversations about lactation and breast milk. Many parents (such as Karen and Millie, Table 5) wanted health professionals to acknowledge that milk retained value following infant death and offer appropriate strategies to use milk purposefully. Some parents (such as Bianca, Table 5) wanted health professionals to better understand the intimate connection and continuing bonds that lactation and milk provided to their deceased infant and the subsequent confusion and grief that may accompany lactation suppression.

Supporting parents to make an informed decision about lactation and breast milk management from the full array of options available to them

Bereaved parents explained they rarely received a choice from the full complement of lactation management options available. If any lactation care was provided, it was almost entirely restricted to suppression (Madison, Table 5). Other options, such as sustained expression, or the use of milk for purposes including as memento or breast milk donation, were seldom offered and most often only facilitated if and when parents themselves initiated this discussion (Samantha, Table 5).

Parents wanted to choose management options consistent with their unique feelings. When provided, this opened up opportunities for parents to incorporate lactation or breast milk positively into grieving processes or practices that could have a profound and transformational impact (Sarah, Table 5). Parents who were supported to use milk purposefully or donate milk to an HMB often experienced their bereaved lactation as redemptive and meaningful.

Supporting parents with lactation and breast milk management and breast care

Once parents had decided how to manage their lactation and breast milk, they required information and support to enact their chosen lactation management strategies, reduce breast discomfort, and prevent complications such as mastitis. Support sought by parents included the following: assistance to obtain necessary equipment such as breast pads, cold and hot packs, or breast pumps, and adequate explanations and demonstrations of breast care techniques such as how to express milk.

How bereaved lactation care is best provided

Parents' wanted bereaved lactation care to be provided in a manner consistent with the generalist bereavement care they received from hospital-based staff. Lactation care was described as being one of the few deficits in hospital-based bereavement care. There were a number of components that bereaved parents listed as being essential to lactation care.

Inclusive of partners and other significant family members

Despite having a desire to support their partner in any way possible, study fathers (such as Louis, Table 5) reported having limited knowledge of their partners' lactation care needs following the death of their infant. Study mothers also reported feeling alone and confused following the commencement of lactation that often occurred after returning home from hospital. Once home, some parents reported that fathers sought information and advice to respond to their partner's lactation care needs, while other family members assisted by purchasing breast pads or breast pumps. Mothers who sustained lactation for the purpose of donation relied on significant emotional and practical support provided by their partners (Maria, Table 5).

Fathers (such as Sebastien, Table 5) also had their own unique needs and meanings relating to their partner's lactation or breast milk that were often related to their involvement in infant feeding practices while the infant was alive or from supporting their partner's bereaved milk donation. Parents stated, for all of these reasons, it is important that partners and other significant family members are present during lactation care conversations, and where appropriate, are supported to engage in shared decision-making about lactation and breast milk management.

Respectful of diversity and responsive to individual needs

Parents appreciated health professionals who understood and openly acknowledged the diverse meanings that lactation or breast milk following infant death may hold to each individual parent. Some families' meanings and choices derived from their cultural, religious, or spiritual beliefs and practices (Laura, Table 5), while others were intimately connected to feeding practices and parenting experiences while their infant was ill, dying, or deceased (Ashley, Table 5).

Supported by written resources

In addition to supportive and compassionate care conversations, parents wanted information to be presented in written form. Parents explained that provision of this information would have assisted them to comprehend and consider lactation and breast milk management strategies at their own pace and when they needed it (Table 5).

When bereaved lactation care is best provided

Parents found it difficult to pinpoint the right time to be presented with information about lactation following infant death. Parents advised if there are days rather than hours leading up to anticipated loss, they could be advised about lactation in advance of their infant's death. Mothers with established lactation appreciated guidance to slowly reduce the amount of milk they were expressing when the demise of their infant's health became apparent (Kylie, Table 5). Parents who were given less warning of infant death stated they should receive lactation care as soon as practically possible after infant death, and definitely before they leave hospital.

Incremental support offered over time that is responsive to changing circumstances and needs

Parents explained that if and when lactation care was provided, it was likely to be limited to one brief encounter with a health professional and it was unlikely they would receive all the information they required. Rather, as lactation can be highly variable, and many mothers (and their partners) did not know what to expect, parents discovered they often did not know what information and support they required until it was too late. Providing information incrementally, as parents wanted and required it, ensured that they were not overwhelmed and felt more able to comprehend information; reflect on the range of choices they had to manage their lactation and breast milk; make an informed and considered decision about what they wanted to do; and enact or alter their management strategies depending on their evolving circumstances, thoughts, and feelings (Table 5).

Continual access to support while in hospital and after returning home

It was not uncommon for bereaved mothers' lactation to commence after returning home from hospital, when care from hospital-based health professionals had usually ceased. The few parents who received follow-up home visits used these to access lactation care. Families stated that follow-up lactation care should be provided routinely, for as long as required, following the death of an infant (Table 5).

Who is best placed to provide bereaved lactation care?

A health professional the family has come to know and trust

Bereaved parents were adamant that lactation care was best provided by the health professional they had established the best relationship with in hospital (Table 5). This could be a social worker, a midwife, a neonatal nurse, an obstetrician, or a lactation consultant.

A health professional with expert knowledge may be required

Parents acknowledged, at times, they may benefit from a specialist health professional, such as a lactation consultant. Parents donating milk to an HMB appreciated the extra support they received from HMB staff. HMB staff provided specialist advice and filled an important gap in support often lacking once families returned home (Samantha, Table 5). Parents who sustained lactation for the purpose of donation to an HMB wanted increased recognition and support, including more practical support to facilitate transportation of milk to the HMB (Andrew, Table 5).

Discussion

Our results confirm that lactation remains a little considered aspect of Australian hospital-based bereavement care and that hospital-based health professionals called upon to provide care to bereaved mothers may lack suitable awareness, knowledge, capacity, confidence, and comfort to discuss lactation.¹² Consequently, bereaved mothers are unlikely to receive essential care and support to make informed decisions about their lactation or breast milk following the death of their infant. Bereaved parents in this study confirmed the need for expanded lactation management options and individualized evidence-based comprehensive lactation care to be available and presented to all bereaved parents.^1,11,12

By presenting specific information on how bereaved parents want lactation care to be provided, this article provides critical information that maternal and perinatal health services can easily use to build upon decades of otherwise successful time-critical lactation care practices^28,29 and extensive infant bereavement care and memory-making practices.^6,30 Our study findings highlight the need to leverage this existing expertise to bridge the current practice divide in lactation and bereavement care and respond to concerns that health professionals do not know how to incorporate lactation care into existing hospital-based bereavement care policies and practices.^1,11,12

Importantly, the manner in which bereaved parents want their lactation care to be provided is consistent with well-accepted and evidence-based perinatal bereavement care practices. Bereaved parents, however, are calling for lactation care to be discussed and more fully included within existing respectful and supportive bereavement care practices that prioritize good communication, shared decision-making, recognition of parenthood, and effective support.⁶ Bereavement care guidelines stress that health professionals must be prepared for parents to have a wide range of responses to infant death.⁶ The parents in this study remind us that lactation is not an exception to this rule, and consequently, bereaved parents should be presented with comprehensive lactation care options and support to make an informed decision that best suits their unique response and needs. Evidence-based perinatal bereavement care also demands that health professionals attend to parents' psychosocial, physical, and practical needs.^6,31 Again, this approach is consistent with the preferred lactation care outlined by study parents. They ask health professionals to consider lactation under the guise of physical support; and to include breast milk among the range of memorial or meaning-making activities already offered to bereaved families^6,31,32; and to acknowledge lactation practices among the many bereavement practices that recognize parenthood and the continuing bonds parents have with their deceased babies.^6,33

Health professionals, however, will only be able to provide enhanced bereaved lactation care if broader sociocultural and systemic changes are made. Bereaved lactation care operates within a policy and practice context replete with complexity across maternity, bereavement, and human milk banking settings. Evidence-based policies that support the provision of comprehensive bereaved lactation care are urgently required across each of these health settings. Recent calls to ensure high-quality emotional and physical care are available to bereaved parents in the postnatal period in hospital and when discharged to their home would assist health professionals to address lactation occurring after loss.^34,35 Health professionals also require ready access to adequate training, resources, and support to enact appropriate care.^30,31,34,35

To this end, existing perinatal bereavement care policies, guidelines, and training programs should be reviewed to assess whether a more comprehensive coverage of the full spectrum of bereaved lactation care options is required to help guide the provision of comprehensive lactation care following infant death.

Furthermore, any patient safety and quality care enhancements need to allow for and include local service microsystems, health professionals, and patients in order for appropriate design and implementation of new policy and practices.²⁰ Recommendations devised from afar are often insufficient. Policy proximity to frontline work and the incorporation of patients and families are needed to fully grasp how lactation care redesign and policy implementation can best be enacted.²⁰ Therefore, in addition to evidence, we recommend that practice change requires the direct attention and tacit knowledge of those with shared expertise, relationships, and emotional connection at the coalface. This is where practice enhancements may be discussed, refined, and implemented¹⁹ to ensure that bereaved parents receive the lactation care they require.

Limitations

The bereaved parents who participated in this study represented a range of different circumstances, including timing of infant deaths. Further research is required to attend to some remaining gaps in knowledge. This study benefited from the novel inclusion of fathers' perspectives, but the limited sample was unable to yield insights into the perspectives or experiences of lesbian, gay, bisexual, transgender, queer, intersex. or First Nations parents. Further research is required to elicit the unique needs of parents from minority or culturally diverse backgrounds.

Conclusion

Quality bereavement care is critical for the health and well-being of mothers and families following infant death.¹⁸ Lactation care is an important, but often overlooked, aspect of perinatal bereavement care.¹² Bereaved families have a critical role to play in informing care delivery and in helping to orient practice change on the factors they think are most critical to their well-being.^17,18 This study allowed bereaved parents to do just this; eliciting not only what lactation care they want and need, but also how, when, and by who bereaved lactation care is best provided. Health professionals must be supported by their organizations and a wider policy context to enact the comprehensive lactation care required and desired by bereaved families.

Footnotes

Acknowledgments

We extend our thanks to the members of our SAG, participating hospitals, and bereaved parents. The study would not have been possible without funding from the Australian Research Council, The Australian National University, and The Newborn Intensive Care Foundation.

Authors' Contributions

D.N.-C.: Methodology, investigation, data curation, writing—original draft, writing—review and editing, and project administration. K.C.: Conceptualization, methodology, investigation, writing—review and editing, project administration, and funding acquisition. S.C.: Investigation, data curation, and writing—review and editing. C.W.: Conceptualization, methodology, writing—review and editing, and funding acquisition.

Disclosure Statement

No competing financial interests exist.

Funding Information

This study is funded by the Australian Research Council, The Australian National University, and The Newborn Intensive Care Foundation (DP180100517).

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