The synthesized findings from the qualitative evidence base — spanning, broadly, 2000 to 2023, with several more recent studies extending the picture into 2024–2026 — suggest, taken as a whole, that parental bereavement after infant death is not a static psychological state so much as a dynamic, embodied, and deeply relational journey. Drawing on the methodological breadth summarized in [Table 1], which encompasses perspectives from settings as varied as New Zealand, Norway, Ghana, and Israel, the findings below are organized around themes that reflect both the multidimensional stressors parents face and the sometimes quiet, sometimes deliberate ways they work to reconstruct a shattered sense of the world. The five interconnected themes described below, along with the relationships we observed between them, are summarized visually in [Figure 1].
4.1 The Clinical Site of Trauma: Enforced Separation and "Surplus Suffering"
A fairly consistent finding across the literature — one that surprised us less in its content than in its persistence across such different health systems — is that the NICU environment often functions as the primary site of initial trauma, rather than simply the backdrop against which trauma occurs. As detailed in [Table 2], parents repeatedly describe the unit as a hostile environment, one where medical technology and a culture of high acuity prioritize the infant's physical survival, understandably, but often at the expense of the parental bond (Porter, 2018; Adcock et al., 2021). This has been termed surplus suffering: unnecessary emotional pain generated not by the loss itself but by systemic factors, such as being treated as a visitor rather than a primary caregiver in one's own child's care (Porter, 2018).
Mothers in particular describe how the physical design of so-called "baby barns" — open-bay wards offering little privacy — diminishes what might otherwise have been early, formative bonding moments. For indigenous whānau in New Zealand, this trauma is compounded further by a lack of cultural safety, where a clinical disregard for relational security, or whakawhanaungatanga, produces a profound sense of alienation and disenfranchisement (Adcock et al., 2021). It is worth noting, too, how small the triggering details often are: staff learning a parent's name, or making space for a father to participate in care, are recurrently described as "little things" that nonetheless function, in practice, as rather big things when it comes to a parent's ability to claim their identity within the ward (Porter, 2018).
4.2 The Embodied Paradox: Lactation as a Site of Grief and Meaning
The physiological reality of lactation after infant death emerges, across nearly every qualitative account we reviewed, as a uniquely agonizing form of embodied trauma — one that does not map neatly onto existing models of grief. Sources consistently indicate that the maternal body continues preparing for a role it can no longer fulfil, producing what has been described as a representational vacuum (Kartaginer et al., 2026; Oreg et al., 2026). As noted in [Table 2], the visceral sensation of milk letting down functions as a daily, involuntary reminder of the infant's absence — not a symbolic reminder, but a literal, physical one, which may be part of why it proves so difficult to simply reason one's way past.
And yet the findings also point to a meaningful shift in how parents come to manage this biological reality over time. Where hospital protocol has historically defaulted to immediate pharmacological suppression, parents increasingly appear to value what researchers term an informed choice approach — one that does not assume suppression is automatically the more compassionate route (Oreg et al., 2026). As indicated in [Table 3], for some mothers, the act of expressing milk purely for relief, or of donating it, ritualistically, to a milk bank, becomes a genuine tool for meaning-making rather than a purely medical decision. In this sense, the act allows a mother to perform one final maternal duty, transforming what began as biological grief into something closer to an altruistic legacy on behalf of the child who died (Værland et al., 2021).
4.3 Identity in Limbo: The "Whose Mother Am I?" Question
The death of an infant appears, again and again in this literature, to trigger a genuine rupture of identity — one characterized by a liminality that participants themselves describe as being "betwixt and between" (Kartaginer et al., 2026). Mothers grapple, often for years, with the deceptively simple existential question, "Whose mother, am I?" — a struggle that social and medical responses tend, unintentionally, to worsen by silencing grief on the assumption that a life so short cannot warrant such prolonged mourning.
The synthesis suggests, further, that identity reconstruction is best understood as a non-linear process: a slow movement from what has been described as a split identity, in which grief is compartmentalized away from daily functioning, toward a more unified sense of self in which the loss is, gradually, integrated rather than resolved (Kartaginer et al., 2026). As shown in [Table 4], when healthcare providers fail to recognize a mother's continuing parental status, an identity gap opens up — one that appears, across several studies, to increase the risk of longer-term depression and anxiety. Conversely, when staff actively validate a mother's role, using the baby's name and recognizing the mother as part of a dyad rather than a bystander, they seem to offer something closer to a compass for navigating this otherwise disorienting liminal space (Porter, 2018). This trajectory, moving from rupture through liminal negotiation toward an integrated sense of self, is depicted in [Figure 2].
4.4 The Architecture of Resilience: Rituals and Continuing Bonds
Resilience, within this body of work, is depicted not as "letting go" — a phrase several participants explicitly reject — but as the active, ongoing maintenance of continuing bonds (Klass et al., 1996; Værland et al., 2021). One of the more striking findings, reflected in [Table 3], concerns the therapeutic function of ritualized memory-making, often initiated not by parents themselves but by nurses and parent support groups acting, in effect, as ritual inventors. These individuals create scrapbooks and memory boxes containing locks of hair, footprints, and photographs, and these small collections appear to serve at least three distinct functions: granting the infant a kind of ontological personhood, by collecting tactile evidence that the child existed and mattered; validating the parents' own status as a family, through physical "proof" of a life however brief; and controlling chaos, by providing a structured, contained outlet for otherwise unmanageable emotion during an existential crisis (Værland et al., 2021).
A further, somewhat unexpected adaptive strategy identified across the sources is what one set of authors term "puddle jumping" — the ability to move, sometimes within a single afternoon, between deep sadness and moments of genuine joy or ordinary functional engagement. This capacity for emotional regulation appears essential to parents' ongoing functioning, particularly for those who have surviving children still requiring their care (Porter, 2018).
4.5 Systemic Barriers and the Path Forward
Finally, the results underscore the considerable role played by healthcare communication and institutional protocol in shaping long-term outcomes. As shown in [Table 4], recurring barriers to parental well-being include contradictory clinical information, resource scarcity in rural settings, and, perhaps most fixable of all, a simple lack of staff training on how to approach lactation care after loss (Hurt et al., 2023; Ani-Amponsah, 2016).
Staff who practice what the literature calls sensitive and responsive care — being heard, being genuinely involved in decisions, and being given adequate, unhurried time for final proximity with their infant — appear, across multiple studies, to meaningfully mitigate the trauma associated with loss (Redshaw et al., 2021). The phrase "this is time we'll never get back" recurs often enough in participants' own words that it seems worth taking at face value: time, more than any single intervention, is what bereaved parents describe as their most precious and least renewable resource (Redshaw et al., 2021). Hospital protocols, accordingly, may do well to prioritize maximum contact time and the creation of genuinely dyadic spaces, where parents can simply be with their children without the constant pressure of the medical gaze.
This is, admittedly, a simplification of a considerably messier and more individual set of experiences — parental coping after infant death appears to function as a negotiated process in which the physical (milk), the psychological (identity), and the social (ritual) intersect, each shaping and constraining the others. By shifting away from a narrowly medicalized model of suppression and toward a more humanized model of meaning-making, healthcare systems may be able to move from being, however unintentionally, sites of additional trauma toward becoming genuine partners in the tender, ongoing reconstruction of a bereaved parent's life.
Table 1: Study Characteristics and Methodological Overview of Included Qualitative Research (2000–2023). Each row summarizes one included study by author(s) and year, country, primary research aim, qualitative methodology, participant type and sample size, and data collection method.
|
Author(s) & Year
|
Country
|
Primary Research Aim
|
Methodology
|
Participant Type
|
Sample Size (N)
|
Data Collection Method
|
References (APA 7th)
|
|
Hurt et al. (2023)
|
UK/Global
|
Synthesize family views on preterm/LBW care
|
Qualitative Evidence Synthesis
|
Mothers, Fathers, Grandparents
|
1280
|
Database search & Thematic Synthesis
|
Hurt et al. (2023)
|
|
Redshaw et al. (2021)
|
England
|
Explore care experiences after neonatal death
|
Qualitative Descriptive
|
Bereaved Mothers
|
194
|
Open-ended survey questions
|
Redshaw et al. (2021)
|
|
Verland et al. (2021a)
|
Norway
|
Explore function of ritualized memory making
|
Reflexive Thematic Analysis
|
NICU Nurses & Support Group
|
N/A
|
Focus Group Interviews
|
Verland et al. (2021a)
|
|
Adcock et al. (2021)
|
NZ
|
Māori whānau experiences of preterm birth
|
Qualitative (Māori framework)
|
Indigenous Māori Families
|
N/A
|
He Tamariki Kokoti Tau interviews
|
Adcock et al. (2021)
|
|
Bosco (2019)
|
Australia
|
Maternal well-being in first 12 months
|
Phenomenology
|
New Mothers
|
N/A
|
Semi-structured Interviews
|
Bosco (2019)
|
|
Porter (2018)
|
NZ
|
First-time mothers’ meaning of prematurity
|
Interpretative Phenomenological (IPA)
|
First-time Mothers
|
15
|
In-depth Interviews
|
Porter (2018)
|
|
Taylor (2016)
|
UK
|
Evolving identities in breastfeeding
|
Qualitative Descriptive
|
New Mothers
|
N/A
|
Video Diaries & Interviews
|
Taylor (2016)
|
|
Ani-Amponsah (2016)
|
Ghana
|
Midwives' experiences with birth asphyxia
|
Hermeneutic Phenomenology
|
Midwives
|
N/A
|
Hermeneutic Spiral Interviews
|
Ani-Amponsah (2016)
|
|
Radjack et al. (2023)
|
France
|
Transcultural skills for professionals
|
Qualitative Review
|
Early Childhood Professionals
|
N/A
|
Literature Review
|
Radjack et al. (2023)
|
|
Dudley (2011)
|
UK
|
Use of picture books in bereavement therapy
|
Phenomenology
|
Bereaved Young People
|
N/A
|
Use of Bibliotherapy
|
Dudley (2011)
|
Table 2: Multidimensional Stressors Experienced by Parents Following Perinatal and Neonatal Loss (2000–2023). Each row identifies a distinct stressor category and cross-references its physical, emotional, social, and systemic impacts, its effect on parental identity, and associated mitigation strategies, with supporting references.
|
Stressor Category
|
Physical Impact
|
Emotional Impact
|
Social Consequence
|
Systemic Factor
|
Identity Impact
|
Mitigation Strategy
|
References (APA 7th)
|
|
Embodied Grief
|
Lactation/Milk "let-down"
|
Reminder of absence
|
Public leaking/Shame
|
Suppression protocols
|
"Body failure"
|
Milk donation rituals
|
Taylor (2016); Redshaw et al. (2021)
|
|
Medical Trauma
|
Enforced separation
|
Feeling like a "visitor"
|
Isolated from family
|
Tech-centric culture
|
Identity erosion
|
Proximity to baby
|
Porter (2018); Hurt et al. (2023)
|
|
Identity Rupture
|
Sleeplessness
|
Existential questioning
|
Withdrawal from peers
|
Social silencing
|
"Whose mother am I?"
|
Identity reconstruction
|
Porter (2018); Dudley (2011)
|
|
Cultural Alienation
|
Biological stress
|
Feeling unheard
|
Disenfranchisement
|
Lack of cultural safety
|
Devalued parenthood
|
Whakawhanaungatanga
|
Adcock et al. (2021)
|
|
Decision Trauma
|
Physical shock
|
Moral distress/Guilt
|
Conflict with partner
|
Lack of guidelines
|
Burden of choice
|
Active involvement
|
Redshaw et al. (2021); Hurt et al. (2023)
|
|
Informational Gaps
|
Insecurity
|
Anxiety/Incompetence
|
Deference to "experts"
|
Inconsistent advice
|
Imposter syndrome
|
Jargon-free comms
|
Hurt et al. (2023); Porter (2018)
|
|
Resource Scarcity
|
Exhaustion
|
Despair/Insecurity
|
Quarrels over gear
|
Rural ward limitations
|
Thwarted mothering
|
Relationship building
|
Ani-Amponsah (2016)
|
|
Environmental Stress
|
Sensory overload
|
Loneliness
|
Separation from whānau
|
Inhospitable design
|
Loss of autonomy
|
Single family rooms
|
Adcock et al. (2021); Porter (2018)
|
|
Ambiguous Loss
|
Fainting/Shock
|
Yearning/Searching
|
Hierarchy of grief
|
Unrecognized loss
|
Disrupted role
|
"Continuing bonds"
|
Klass et al. (1996); Dudley (2011)
|
|
Crisis Trauma
|
Limited presence
|
Abandonment/Panic
|
Social distancing
|
COVID-19 Restrictions
|
Invisible grief
|
Memory boxes
|
Redshaw et al. (2021); Verland et al. (2021a)
|
Table 3. Coping and Meaning-Making Mechanisms Reported by Bereaved Parents After Infant Death (2000–2023). Each row describes a specific coping mechanism, its theoretical grounding, the concrete activity involved, the facilitating role of staff or systems, relevant cultural considerations, its intended outcome, and potential barriers, with supporting references.
|
Coping Mechanism
|
Theoretical Basis
|
Specific Activity
|
Staff/System Role
|
Cultural Aspect
|
Intended Outcome
|
Potential Barriers
|
References (APA 7th)
|
|
Scrapbooking
|
Ritualization
|
Collecting photos/poems
|
Initiated by nurses
|
Individualized
|
Personhood
|
Workload burden
|
Verland et al. (2021b)
|
|
Memory Boxes
|
Ontological Status
|
Saving locks of hair
|
Collaborative
|
Transition rituals
|
Tangible proof of life
|
Institutional policy
|
Verland et al. (2021b)
|
|
Puddle Jumping
|
Emotional Reg.
|
Moving sadness to joy
|
Validating emotions
|
Universal human
|
Functional engagement
|
"Moving on" pressure
|
[Source History]
|
|
Bibliotherapy
|
Bibliotherapy
|
Children's picture books
|
Facilitating groups
|
Narrative metaphors
|
Emotional relief
|
Poor book selection
|
Dudley (2011)
|
|
Continuing Bonds
|
Continuing Bonds
|
Symbolic relationship
|
Minimal (Parental)
|
Spiritual connection
|
Unified identity
|
Social silencing
|
Klass et al. (1996); Dudley (2011)
|
|
Whanaungatanga
|
Māori Framework
|
Relationship building
|
Engaging whānau
|
Māori genealogy
|
Cultural safety
|
Medical technology
|
Adcock et al. (2021)
|
|
Milk Donation
|
Embodied Care
|
Altruistic donation
|
Bank coordination
|
Legacy building
|
Transformation
|
Lack of information
|
Taylor (2016); Verland et al. (2021b)
|
|
Social Support
|
Restoration
|
Peer support groups
|
Group referrals
|
Relational security
|
Reduced isolation
|
Stigma of loss
|
Hurt et al. (2023); Verland et al. (2021b)
|
|
Holding the Baby
|
Reality Testing
|
Skin-to-skin contact
|
Provided time/space
|
Physical bonding
|
Reduction in PTSD
|
Medical equipment
|
Redshaw et al. (2021); Porter (2018)
|
|
Spiritual Coping
|
Spiritual Care
|
Prayer/Guardian angels
|
Chaplain availability
|
Intersubjectivity
|
ACCEPTANCE
|
Secular hospital bias
|
Radjack et al. (2023); Verland et al. (2021a)
|
Table 4. Healthcare System Barriers and Facilitators Affecting Parental Well-Being After Infant Death (2000–2023). Each row addresses one dimension of care, contrasting an identified barrier with a corresponding facilitator, and detailing staff training needs, communication style, the role of spiritual care, and policy implications, with supporting references.
|
Dimension of Care
|
Identified Barrier
|
Facilitator (What Worked)
|
Staff Training Need
|
Communication Style
|
Spiritual Care Role
|
Policy Implication
|
References (APA 7th)
|
|
Environment
|
Technology-centric
|
Single family rooms
|
Family-centered care
|
Humanized/Welcoming
|
"Soul recognition"
|
Design standards
|
Porter (2018); Hurt et al. (2023)
|
|
Autonomy
|
Immediate suppression
|
Informed-choice milk
|
Lactation after loss
|
Empathetic
|
Validating biological bond
|
Informed choice
|
Taylor (2016); Redshaw et al. (2021)
|
|
Culture
|
Cultural alienation
|
Māori Framework
|
Cultural safety
|
Relationship-based
|
Wairuatanga
|
Indigenous rights
|
Adcock et al. (2021); Radjack et al. (2023)
|
|
Bereavement
|
"Silencing" of grief
|
Ritualized acts
|
Trauma-informed care
|
Sensitive/Responsive
|
Transition rituals
|
Standardized support
|
Verland et al. (2021b); Redshaw et al. (2021)
|
|
Relationship
|
"Visitor" status
|
Active involvement
|
Dyadic care focus
|
Collaborative
|
Validating motherhood
|
Shared decision-making
|
Porter (2018); Hurt et al. (2023)
|
|
Information
|
Contradictory advice
|
Consistent protocols
|
Communication skills
|
Jargon-free
|
Shared silence
|
Coordinated care
|
Hurt et al. (2023)
|
|
Logistics
|
Financial burden
|
Financial support
|
Resource allocation
|
Pragmatic/Helpful
|
Providing "peace"
|
Social welfare
|
Hurt et al. (2023); Ani-Amponsah (2016)
|
|
Diversity
|
Universalism
|
Tailored care plans
|
Transcultural skills
|
Culturally humble
|
Respecting "The Other"
|
Decolonized methods
|
Radjack et al. (2023)
|
|
Proximity
|
Separation/Curtains
|
Dedicated rooms
|
Privacy protocols
|
Direct/Inclusive
|
Shared humanity
|
Ward configuration
|
Redshaw et al. (2021); Hurt et al. (2023)
|
|
Crisis Care
|
Isolation (COVID)
|
Creative connection
|
Digital literacy
|
Reassuring
|
Inner peace
|
Resilient systems
|
Redshaw et al. (2021)
|