Introduction
The undiscovered country, from whose bourn no traveller returns.
(Hamlet, Act III, Scene I).
Despite Shakespeare’s enduring articulation of death as an unknowable frontier, much about how humans perceive death, grief, and dying remains deeply puzzling. Understanding of grief has evolved, shifting from private mourning to more collective and culturally variable experiences (Guldin and Leget Reference Guldin and Leget2024). However, grief and bereavement care (GBC) is an underdeveloped area of medicine, both in clinical management and medical education.
This gap is even more pronounced when focusing on pediatric palliative care (PPC). Children with life-threatening and life-limiting conditions, along with their families, often face profound uncertainty, cumulative losses, and complex decision-making (van Teunenbroek et al. Reference van Teunenbroek, Mulder and Verhagen2025). For these reasons, PPC is an essential component of their care. PPC aims to relieve physical, psychological, social, and spiritual suffering for children and their families from the time of diagnosis through the end of life and into the bereavement period (van Teunenbroek et al. Reference van Teunenbroek, Mulder and Verhagen2025).
One of the key benefits of PPC is the integration of GBC. Beyond families, it is important to recognize that grief is also experienced by healthcare professionals (HCPs), who may likewise be at risk for adverse psychological and emotional sequelae (Grunauer et al. Reference Grunauer, Mikesell and Bustamante2021). Grief among HCPs may be repressed or delayed due to professional responsibilities and expectations (Barnes et al. Reference Barnes, Jordan and Broom2020). This is due to the fact that very limited time is devoted to training medical students and postgraduate trainees in the assessment and management of grief, especially during developmental periods (Chandran et al. Reference Chandran, Raman and Shiva2025).
Despite previous literature describing grief experiences, GBC interventions, and barriers to care, there remains a lack of practical frameworks that integrate these elements into a longitudinal, interdisciplinary model spanning diagnosis, illness progression, and bereavement. This gap limits the consistent implementation of GBC across the pediatric illness trajectory. The challenge is particularly pronounced in low- and middle-income countries, where resource limitations, workforce shortages, and disparities in access to PPC may further hinder the delivery of comprehensive grief support. Moreover, the literature remains limited regarding GBC in specific pediatric populations, including children with congenital, genetic, neurodevelopmental, and progressive neurological conditions. Addressing these gaps is critical to ensure equitable, individualized, and developmentally appropriate grief support for children, families, and HCPs.
The aim of this perspective review is not only to summarize current evidence regarding GBC in PPC but also to propose a practical framework for its implementation. We argue that GBC should be viewed as a longitudinal, developmentally sensitive, and interdisciplinary component of PPC that begins at diagnosis and extends beyond death into bereavement. To support this framework, we first examine the unique characteristics of PPC and define key forms of grief relevant to children, families, and HCPs. We then review the experiences and needs of these stakeholders, discuss barriers and disparities that limit access to effective GBC, and identify opportunities for improvement. Collectively, these elements provide the conceptual foundation for the proposed implementation framework and future directions for integrating GBC into routine PPC practice.
Literature search strategy
This manuscript was conducted as a narrative perspective review. A literature search was performed using PubMed and Google Scholar to identify studies addressing GBC within PPC settings. Search terms included combinations of “grief,” “bereavement,” “bereavement care,” “pediatric palliative care,” “children,” “caregivers,” “siblings,” “healthcare professionals,” “anticipatory grief,” “complicated grief,” and “prolonged grief disorder.” The literature search was conducted between December 2025 and January 2026. Search terms were combined using Boolean operators (AND/OR) and adapted according to the requirements of each database. In addition to database searches, reference lists of relevant articles were manually reviewed to identify additional publications of interest.
Publications from 2020 onward were prioritized to capture contemporary evidence and emerging approaches to care. Foundational and highly cited earlier works were also included when they provided essential conceptual, clinical, or historical context relevant to PPC and grief support.
Articles were selected based on their relevance to grief and bereavement experiences among pediatric patients, families, siblings, and HCPs, as well as interventions, educational strategies, and models of care applicable to pediatric palliative settings. Studies focused exclusively on adult populations, non-English publications without accessible translations, or articles lacking relevance to GBC were generally excluded.
Given the narrative and perspective-based nature of this review, formal systematic screening procedures, risk-of-bias assessments, and PRISMA-guided reporting were not performed. This approach was selected to synthesize current evidence, highlight existing gaps in the literature, and support the development of a conceptual framework for GBC implementation in PPC.
Understanding grief in PPC
According to Barnes et al., grief can be defined as an “emotional reaction to bereavement, falling within expected norms, given the circumstances and implications of the death, with respect to time course and/or intensity of symptoms” (Barnes et al. Reference Barnes, Jordan and Broom2020). Some forms of grief include anticipatory grief, collective grief, ecological grief, ambiguous grief, disenfranchised grief, and complicated grief, as can be seen in Figure 1 (Kumar Reference Kumar2023). Anticipatory grief refers to the experience of bereavement in response to an expected or impending loss (Bilić et al. Reference Bilić, Skokandić and Puljak2022). Collective grief can be defined as grief that occurs when a large number of deaths in a community result in grief that can be shared by larger communities (Kumar Reference Kumar2023). Ecological grief is the emotional response to ecological change, including the loss of species, ecosystems, and meaningful landscapes (Comtesse et al. Reference Comtesse, Ertl and Hengst2021). Ambiguous grief is a form of grief that arises from an unclear loss, in which it is unknown whether a loved one is dead or alive, absent or present (Robins Reference Robins2024). Disenfranchised grief can be defined as grief resulting from a loss that is not openly acknowledged or socially recognized (Cesur-Soysal and Arı Reference Cesur-Soysal and Arı2024).
Types of grief relevant to pediatric palliative care.
Complicated grief is a disabling condition that occurs when the normal grief process is disturbed or prolonged (Champion and Kilcullen Reference Champion and Kilcullen2025). This type of grief has been reported to be more prevalent following the sudden or violent loss of a child (Champion and Kilcullen Reference Champion and Kilcullen2025). Hallmarks of complicated grief include persistent and intense yearning, longing, and sadness, often accompanied by an unwillingness to accept the reality of the person’s death, intrusive thoughts or images of the deceased, avoidance of reminders, and simultaneous attempts to “hold on” to the deceased (Champion and Kilcullen Reference Champion and Kilcullen2025).
Prolonged grief disorder, as defined in the DSM-5-TR, is characterized by a persistent and pervasive grief response following the death of a close person (Eisma Reference Eisma2023). The diagnosis requires that the death occurred at least 12 months prior for adults and at least 6 months prior for children and adolescents (Eisma Reference Eisma2023). Patients experience persistent grief symptoms occurring nearly every day for at least 1 month (Eisma Reference Eisma2023). In addition, affected patients experience symptoms that result in clinically significant functional impairment, causing distress in social, occupational, or other important areas of functioning (Eisma Reference Eisma2023). Furthermore, the symptoms are not better explained by another mental disorder, nor are they attributable to the physiological effects of a substance or another medical condition (Eisma Reference Eisma2023).
GBC is a component of PPC that focuses on supporting and improving emotional responses among patients, family members, and providers. Unfortunately, GBC is sometimes regarded as the poor cousin of palliative care. GBC is care that includes, but is not limited to, pre-death education and support, psychosocial and spiritual care for families and providers during the dying process, during periods of loss of quality of life or limbs, and after death, with the aim of supporting surviving family members, community members, and HCPs (Lichtenthal et al. Reference Lichtenthal, Roberts and Donovan2024). Comprehending the different types of grief and their clinical implications is crucial for developing and implementing effective GBC within PPC settings.
Why pediatric GBC is different
Key differences between adult and PPC
Although adult and PPC share overarching aims and ethical principles, they differ in several key aspects that substantially influence clinical practice, decision-making processes, and care organization. In adults, quality of life may be improved by discontinuing futile disease-specific or invasive treatments and shifting the focus toward symptom control and pain relief. In children, however, quality of life is more complex, and termination of treatment is not always necessary, appropriate, or aligned with family goals. This difference is closely related to the distinct disease trajectories and temporal horizons observed in pediatric populations. The Association for Children’s Palliative Care, now currently called Together for Short lives, developed 4 categories that could aid in the identification in which a child should get access to palliative care: (1) “life-threatening conditions for which curative treatment may be feasible but could fail; (2) conditions for which there may be long phases of intensive treatment aimed at prolonging life, but premature death is still possible; (3) progressive conditions for which there is no curative treatment; and (4) conditions that are not considered progressive but are characterized by severe neurological disability, which may cause the patient to deteriorate unpredictably” (Boucher et al. Reference Boucher, Downing and Shemilt2014). As a result, PPC cannot be conceptualized solely as end-of-life care but rather as a longitudinal model that accompanies the child and family throughout the entire illness trajectory.
PPC emphasizes child- and family-centered care, in which family members are active participants and themselves recipients of palliative support (Chelazzi et al. Reference Chelazzi, Villa and Lanini2023). This approach is particularly important because children often lack full self-determination, and their autonomy is exercised through their parents or caregivers (Chelazzi et al. Reference Chelazzi, Villa and Lanini2023). Within this framework, the family is not only a partner in care but also a population at risk of psychosocial distress, chronic burden, and anticipatory grief, necessitating ongoing assessment and support.
Another key distinction lies in the timing of referral. Adults are typically referred to palliative care at later stages of life-threatening illness, and in some countries only when life expectancy is estimated to be less than 6 months or when all curative treatment has been withdrawn (Chelazzi et al. Reference Chelazzi, Villa and Lanini2023). In contrast, PPC involves continuous care rather than a “handover,” allowing palliative support to coexist with disease-directed treatment from the time of diagnosis, following a concurrent care model that adapts dynamically to changes in clinical status and family priorities (Chelazzi et al. Reference Chelazzi, Villa and Lanini2023). Moreover, children represent a distinct patient population, as they may have difficulty communicating pain due to illness severity, the presence of delirium, and the frequent use of invasive monitoring as well as interventions (Rothschild and Derrington Reference Rothschild and Derrington2020).
PPC also focuses on helping families adapt to the progressive loss of a child’s physical autonomy. As a result, family caregivers are often trained in the use of assistive devices and medical technologies (Chelazzi et al. Reference Chelazzi, Villa and Lanini2023). Given the unique caregiving role of parents, bereavement following the death of a child is described as one of the most intense emotional strains, with many parents continuing to yearn for their child for the rest of their lives (Wiener and Weaver Reference Wiener and Weaver2025).
These distinctions become even more pronounced within pediatric subspecialties, as is the case with neonatal palliative care. In this context, the diagnosis of a life-limiting condition may be established during the prenatal period, necessitating the initiation of GBC before the child is even born (Garten et al. Reference Garten, Globisch and von der Hude2020). Consequently, parents are often required to confront complex and critical decision-making processes before fully assuming their parental identity (Garten et al. Reference Garten, Globisch and von der Hude2020). Moreover, the process of mourning may begin simultaneously with the periods of bonding, family formation, and identity development (Garten et al. Reference Garten, Globisch and von der Hude2020). This overlap between attachment and loss exemplifies anticipatory grief, a phenomenon particularly prominent in PPC and less commonly addressed in adult models. In some cases, the child may never become an integrated member of the extended family, leaving parents “orphaned” in their grief, mourning without social recognition or communal support, and at heightened risk of emotional and social isolation (Garten et al. Reference Garten, Globisch and von der Hude2020).
Risk and protective factors for complicated grief in PPC
There are several multifactorial elements that can predispose patients to, and place them at risk of developing, complicated grief. These include relational factors, personality traits, coping styles, psychiatric history, medical comorbidities, and socioeconomic factors (Mason et al. Reference Mason, Tofthagen and Buck2020). Specifically, risk factors for complicated grief include a history of mental illness, substance use, and poor caregiver coping skills (Mason et al. Reference Mason, Tofthagen and Buck2020). It is important to note that much of the research that has been published is regarding adult patients, and more light remains to be shed regarding pediatric patients. In pediatric settings, the grieving process can shape developmental trajectories, influence the coping strategies of parents and other family members, and affect the child’s own involvement in care. This highlights the need for pediatric-specific screening models rather than extrapolation from adult data.
According to recent studies, some authors argue that having a secondary education may act as a protective factor against complicated grief; however, this remains controversial (Parro-Jiménez et al. Reference Parro-Jiménez, Morán and Gesteira2021). Additionally, problem-focused coping, pursuit of transcendence, and engagement in planned recreational activities have been identified as potential protective factors (Parro-Jiménez et al. Reference Parro-Jiménez, Morán and Gesteira2021). Other factors associated with a decreased risk of complicated grief include older age, the patient’s decision to decline treatment, and involvement in medical decision-making (Sanderson et al. Reference Sanderson, Humphreys and Walker2022). With these considerations in mind, it is critical to encourage further research to better identify and validate protective and risk factors that can be screened early by HCPs and appropriately addressed as palliative care is initiated.
Grief across the PPC continuum
GBC for the patient
One of the most important key takeaways from grief support is that consultation with PPC should begin as early as the diagnosis is made, instead of near the end of life. These early interactions help address any grief that begins to build throughout the illness trajectory (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). How patients might feel toward death is multifactorial and may include restricted or veiled information about one’s health status, limitations in involvement in medical decision-making, and fear of poorly controlled physical symptoms (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). Children can understand the concept of death by around 8 years of age, while the irreversibility, universality, and finality of death are typically understood between 5 and 7 years of age (Kersun and Shemesh Reference Kersun and Shemesh2007). It is critical not to withhold information about death, as doing so may increase a child’s fear and anxiety (Kersun and Shemesh Reference Kersun and Shemesh2007). It is important to note that having death anxiety could reactivate or exacerbate previous health conditions, such as anxiety disorders and panic disorder (Schuelke et al. Reference Schuelke, Crawford and Kentor2021).
For the patient, having autonomy is critical in the setting of a life-limiting diagnosis; therefore, legacy-making interventions are important psychological interventions that aim to help children and their families create lasting memories (Deng et al. Reference Deng, Zheng and Hong2025). This may reduce anxiety and the emotional burden associated with leaving loved ones, especially concerns about whether younger siblings will remember them after they die (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). Surgical interventions that result in permanent physical loss, such as amputation, may also represent significant sources of grief. These procedures can profoundly affect identity, autonomy, and psychological well-being (Şimsek et al. Reference Şimsek, Öztürk and Nahya2020). In this context, integrating GBC before and after surgery, including early psychological support and rehabilitation planning, may improve both emotional adaptation and overall outcomes (Roșca et al. Reference Roșca, Baciu and Burtăverde2021).
Having outlets for creativity can be beneficial for the child; these may include music therapy, art therapy, and play therapy to help process intense emotions and grief (Boucher et al. Reference Boucher, Downing and Shemilt2014; Motlagh et al. Reference Motlagh, Bakhshi and Davoudi2023; Kammin et al. Reference Kammin, Fraser and Flemming2024). Applying concepts such as identifying sounds or songs that might soothe a child as they near death can also be helpful (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). It is important to keep in mind during planning that children may wish to participate in unique spiritual, cultural, or family traditions (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). Children develop their own understanding of spirituality and may choose to partake in it (Pravin Reference Pravin2023). These may include prayer, consumption of herbal substances for healing, or opening windows to allow the soul to exit (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). Therefore, it is critical to ask families what is important to them and to assist with access to chaplains or other spiritual guides for the patient.
GBC for the family
Parents consistently report high satisfaction with interactions with HCPs, particularly regarding communication, continuity of care, and parental involvement (van der Geest et al. Reference van der Geest, Darlington and Streng2014). However, some families may worry that the care team will withdraw support as the child approaches the end of life (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). During this period, families may experience emotional outbursts and physical strain related to underlying grief (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). To address these reactions, grief should be explicitly named and validated, as doing so can help families gain perspective and improve emotional coping (Schuelke et al. Reference Schuelke, Crawford and Kentor2021).
As part of anticipatory and end-of-life care, HCPs may support families in developing meaningful legacies. Children and families can establish legacy through abstract symbols or tangible keepsakes such as hand molds, handprints, memory books, photographs, and videos (Deng et al. Reference Deng, Zheng and Hong2025). Additional keepsakes may include ink prints, locks of hair, ink-print jewelry, and heartbeat recordings (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). While these items can be deeply meaningful, it is important that they do not become the central emphasis as death approaches; instead, focus should remain on honoring the child and the family’s experience (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). It is important to note that care at the time of death should remain family-centered and culturally sensitive. Social workers should be involved to assist families with memorial and funeral planning (Schuelke et al. Reference Schuelke, Crawford and Kentor2021).
Siblings may require special attention before and after a child’s death. Evidence suggests that the inclusion of siblings in the care of children with serious illness may confer psychological and emotional benefits (Gaab et al. Reference Gaab, Owens and MacLeod2014). When memory boxes are offered to the family, siblings may benefit from having their own individualized boxes to preserve and honor their unique relationship with the patient (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). Discussing death with young children is complex, and the use of euphemisms is discouraged, as they may create confusion or generate new fears (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). Therapeutic play sessions, counseling, and educational services may help siblings process their emotions more effectively (Charan et al. Reference Charan, Kalia and Kumar2024). Open discussions about grief and reassurance that a wide range of emotions is normal and acceptable are particularly beneficial (Schuelke et al. Reference Schuelke, Crawford and Kentor2021).
Despite best efforts, many families report feeling abandoned by the medical system after their child’s death (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). To mitigate this, providers can follow established protocols to ensure consistency and continuity of care. Paper or electronic checklists have been used to guide post-death care and ensure families receive appropriate resources to take home (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). Communication at the time of death should be delivered through multiple modalities, including verbal explanations, printed materials, and electronic information, and providers should avoid clichés that may minimize grief (Schuelke et al. Reference Schuelke, Crawford and Kentor2021).
Support should continue well beyond the immediate post-death period (Charan et al. Reference Charan, Kalia and Kumar2024). Establishing and maintaining a supportive relationship with the family after a child’s death can facilitate acceptance of the loss and ease the bereavement process (Pakseresht et al. Reference Pakseresht, Rassouli and Rejeh2021). Standard bereavement care practices include assigning a clearly identified point of contact for ongoing support and reaching out to families the day following the child’s death to address immediate questions (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). Bereavement programming should extend for at least 1 year and provide support through significant milestones (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). Common follow-up practices include sending condolence cards and making supportive phone calls (Schuelke et al. Reference Schuelke, Crawford and Kentor2021; Chelazzi et al. Reference Chelazzi, Marelli and Mantovani2025). Longitudinal support may also involve inviting families to participate in mentorship or advisory roles within the healthcare system (Schuelke et al. Reference Schuelke, Crawford and Kentor2021). Collectively, these findings highlight that grief in PPC is not a discrete event that occurs only after death but rather a longitudinal process that affects patients, families, siblings, and the HCPs who care for them throughout the illness trajectory and into bereavement.
GBC for HCPs
HCPs are particularly susceptible to burnout, which includes feelings of emotional exhaustion, depersonalization, and a decreased sense of personal accomplishment (Izdebski et al. Reference Izdebski, Kozakiewicz and Białorudzki2023). This is crucial because burnout can increase medical errors and put patient safety at risk (Izdebski et al. Reference Izdebski, Kozakiewicz and Białorudzki2023). Moreover, grief can be positively correlated with burnout and negatively correlated with job satisfaction (Phillips et al. Reference Phillips, Trainum and Thomas Hebdon2025). Despite having time-limited relationships with patients, HCPs often develop emotional connections and bonds during caregiving and may, in turn, experience grief (Phillips et al. Reference Phillips, Trainum and Thomas Hebdon2025). This grief may arise from cumulative losses and repeated exposure to patient death (Phillips et al. Reference Phillips, Trainum and Thomas Hebdon2025). It is important to recognize that grief is not inherently negative; however, when unaddressed, it can affect the healthcare workforce’s well-being and stability (Phillips et al. Reference Phillips, Trainum and Thomas Hebdon2025). Certain factors may intensify grief among HCPs, including the young age of the patient, the circumstances and duration of the dying process, the depth of the relationship with the patient or family, and situations in which a patient dies without family present (Sharif et al. Reference Sharif, Almutairi and Alnasser2025). Physical responses may include crying, nightmares, and fatigue (Feng et al. Reference Feng, Shen and Li2024). Cognitive responses may involve emotional numbness, self-doubt, and self-stigma, while psychological or existential responses can include loneliness, loss of meaning or hope, and death anxiety (Feng et al. Reference Feng, Shen and Li2024). Therefore, targeted education and training in GBC are essential for HCPs as they navigate both training and routine clinical responsibilities.
Fostering a sensitive work culture in which death is not treated as an unspoken expectation but is openly acknowledged may help alleviate grief among HCPs (Phillips et al. Reference Phillips, Trainum and Thomas Hebdon2025). Moreover, providing protected time for reflection and mourning can further support emotional processing and well-being (Phillips et al. Reference Phillips, Trainum and Thomas Hebdon2025). Many HCPs have reported that they would benefit from increased education, the establishment of grief-friendly spaces, such as mourning rooms, as well as proactive approaches to grief management, including team huddles and structured debriefings (Burm et al. Reference Burm, MacDonald and Melro2025). Further research is needed to better elucidate additional contexts in which HCPs may experience grief and to identify novel and innovative strategies that may be effective in managing grief and, consequently, improving the quality of care. Addressing professional grief should be viewed not only as an individual wellness issue but as a patient safety and workforce sustainability priority.
Barriers to effective GBC
Global disparities and barriers to GBC
Despite the previously described sequelae of untreated grief and the growing body of research on this topic, access to GBC remains limited. Care is often unstandardized, inconsistently available, and at times insufficient. Previous work by Grunauer et al. demonstrated that GBC fulfillment scores differ significantly between high-income countries and upper-middle-income countries, as well as between high-income and lower-middle-income countries (Grunauer et al. Reference Grunauer, Mikesell and Bustamante2021). Frequently reported barriers to accessing support services for parents include sufficient informal support, lack of perceived need, and lack of time (Bronsema et al. Reference Bronsema, Theißen and Oechsle2022). Additional barriers include limited institutional financial support, insufficient formal training, prevailing intensive care unit (ICU) culture, underdevelopment of palliative care services, and varying cultural perceptions of child death (Grunauer et al. Reference Grunauer, Bustamante and Zambrano2020).
A review article reported that only a limited number of studies have documented bereavement interventions in low- and middle-income countries (Pedraza et al. Reference Pedraza, Vokinger and Cleves2024). The authors emphasized that bereavement interventions should be culturally adapted and implemented within hospital settings, where more active support measures can be provided (Pedraza et al. Reference Pedraza, Vokinger and Cleves2024). These interventions may help guide bereaved parents and facilitate the expression of emotions that, according to the authors, parents may not otherwise express on their own (Pedraza et al. Reference Pedraza, Vokinger and Cleves2024). Integration of GBC into undergraduate medical education and continuing professional development is essential to improving outcomes for patients, families, and HCPs globally. This integrated approach should recognize that grief and bereavement are not exclusive to specialties such as palliative care. All HCPs across settings should be equipped to provide first-line, family-centered support.
Special considerations for GBC
Although the principles of GBC can be applied broadly across PPC, certain patient populations face unique emotional, developmental, and psychosocial challenges that may require tailored approaches. Children with congenital, genetic, neurodevelopmental, and progressive neurological conditions often experience prolonged illness trajectories characterized by functional decline, uncertainty, and recurrent losses, all of which can shape grief experiences for both patients and their families. Additionally, HCPs caring for these populations should be able to recognize anticipatory grief, ambiguous loss, caregiver burden, and other grief-related responses that may emerge throughout the disease course.
For example, parents of children with Down syndrome frequently report grief, sadness, anger, frustration, and uncertainty following diagnosis, experiences that have been described as a form of ambiguous loss (Jeter and Turns Reference Jeter and Turns2022). These findings highlight the importance of recognizing grief-related responses early and integrating psychosocial support throughout the care continuum. Similarly, progressive neurological and neuromuscular disorders, such as spinal muscular atrophy and cerebral palsy, may expose patients and families to prolonged periods of uncertainty, functional decline, caregiver burden, and anticipatory grief (Yang et al. Reference Yang, Mu and Wang2016; Volpe Reference Volpe2021; Swarnakar and Yadav Reference Swarnakar and Yadav2024). Early integration of palliative care may help address not only physical symptoms but also the psychosocial, emotional, and spiritual needs that appear as patients’ conditions worsen.
These examples illustrate how grief experiences may vary across pediatric populations and reinforce the need for flexible, individualized, and developmentally appropriate approaches within GBC. Nevertheless, further research is needed to better characterize grief experiences and identify optimal support strategies across diverse congenital and neurodevelopmental conditions.
Proposed framework for GBC implementation in PPC
The preceding sections highlight several recurring themes, including the longitudinal nature of grief, the developmental uniqueness of pediatric populations, the needs of patients, families, and HCPs, and persistent barriers to implementation. Based on these observations, we propose a framework for GBC implementation in PPC.
When a child is diagnosed with a condition that limits quality of life, GBC should be initiated early within an integrated model of care (IMOC). This model differs from a consultation-based approach by emphasizing shared responsibility among HCPs, with all team members possessing foundational competencies in PPC communication and grief recognition.
We propose that the framework be conceptualized in 3 phases: diagnosis, illness course, and bereavement, which can be seen in Figure 2. This framework is intended as a conceptual and hypothesis-generating model and should not be interpreted as a validated standard of care.
Proposed framework for successful GBC in PPC.
Figure 2 Long description
The phases of the Integrated Model of Care (IMOC) in Pediatric Palliative Care (PPC) are outlined. It is divided into three sections: Starting at diagnosis, Across the illness trajectory and Throughout bereavement. Starting at diagnosis includes: - Initial Grief Screening - Family meetings - Introduction to IMOC - Baseline Psychosocial assessment Across the illness trajectory features: - Key Transition Points: - Functional decline - Disease progression - Major interventions - Change in goals of care - Integrated Model of Care: - Psychology - Nursing Team - Social Workers - Nutritionist - Spiritual Care - Physician: Provide GBC to HCPs and screen for grief - Interventions: - Spiritual support - Legacy building - Music therapy - Play-based therapy - Art therapy Throughout bereavement includes: - Upon Child′s Death - Continue GBC with family - IMOC.
Phase 1: Diagnosis. Initial grief screening should be performed by members of the primary care team, including physicians, nurses, social workers, or other trained professionals. Assessment should include evaluation of emotional distress, coping strategies, family functioning, caregiver burden, spiritual concerns, previous mental health conditions, and available social support systems. This initial assessment should be followed by family meetings and an introduction to the IMOC. A baseline psychosocial assessment should identify emotional, social, spiritual, and family needs while establishing anticipatory support strategies.
Phase 2: Illness course. Grief-related needs should be reassessed longitudinally at key transition points, including functional decline, disease progression, major interventions, and changes in goals of care. Reassessment can be conducted through structured clinical interviews, psychosocial evaluations, validated grief screening instruments when available, and ongoing interdisciplinary observations during routine clinical encounters. Escalation pathways should rely on clinical judgment and may be triggered by persistent distress, significant caregiver burden, impaired family functioning, inability to meet caregiving responsibilities, or concerns for complicated grief. Depending on identified needs, referrals may be made to psychologists, psychiatrists, social workers, spiritual care providers, or other members of the interdisciplinary team. Developmentally appropriate interventions should be incorporated throughout this phase. Younger children may benefit from play, music, and art therapy, whereas older children and adolescents may benefit from legacy-making activities, structured communication, counseling, and participation in medical decision-making when appropriate. Concurrently, HCPs should receive ongoing support through education, debriefings, and access to grief resources.
Phase 3: Bereavement. Following the death of a child, support should extend beyond the immediate post-death period. Follow-up communication, condolence cards, referrals to bereavement resources, and outreach during significant milestones such as birthdays, anniversaries, and holidays should be incorporated into routine care. Families demonstrating persistent distress or symptoms suggestive of complicated grief should receive specialized support. HCPs should likewise participate in structured debriefings and be assessed for grief-related needs.
Future studies should evaluate the implementation of this framework using outcomes such as rates of grief screening, utilization of bereavement services, family satisfaction, caregiver burden, HCPs well-being, and identification of complicated grief.
The specific roles and responsibilities of HCPs within the IMOC are outlined in Table 1.
Interdisciplinary Team Roles Across Phases of Pediatric Grief and Bereavement Care
Table 1 Long description
Roles are listed by team member, with responsibilities described across three columns: Diagnosis Phase, Illness Course Phase, and Bereavement Phase. Primary physician responsibilities move from introducing PPC and GBC concepts, initial grief screening, and shared decision making, to reassessing grief concerns at transition points and coordinating referrals, then to family follow up and continuity when appropriate. Nurse responsibilities progress from identifying emotional distress and providing education, to monitoring psychosocial needs and reinforcing coping strategies, then to maintaining family contact when appropriate and identifying ongoing support needs. Social worker responsibilities include assessing social needs, caregiver burden, and financial and practical concerns, then resource navigation and caregiver support with family counseling referrals, then funeral planning assistance, bereavement resources, and longitudinal follow up. Psychologist responsibilities include baseline psychosocial assessment and coping evaluation, then counseling with grief interventions, cognitive behavioral strategies, and support for complicated grief risk factors, then bereavement counseling with monitoring for prolonged or complicated grief. Psychiatrist responsibilities include evaluating pre existing psychiatric conditions when indicated, then managing severe anxiety, depression, trauma related symptoms, or other psychiatric concerns, then continuing management of significant psychiatric sequelae related to bereavement. Chaplain or spiritual care provider responsibilities include exploring spiritual beliefs, meaning making, and cultural practices, then addressing spiritual distress and supporting rituals important to the child and family, then facilitating remembrance practices, memorial rituals, and spiritual bereavement support. Pediatric psychosocial specialist responsibilities include assessing developmental needs and coping style, then delivering play therapy, art therapy, music therapy, developmental support, and legacy making activities, then supporting siblings and surviving family members through developmentally appropriate interventions.
PPC = pediatric palliative care; GBC = grief and bereavement care
Future steps and directions
Although this framework provides a conceptual model for integrating GBC into pediatric palliative practice, further research is needed to validate its effectiveness, develop culturally adapted assessment tools, and identify the most effective interventions across diverse healthcare settings. In particular, future studies should assess the feasibility and effectiveness of implementing the proposed 3-phase framework across the diagnosis, illness course, and bereavement periods. Researchers should evaluate whether routine grief assessment at predefined clinical transition points improves the identification of anticipatory grief, caregiver burden, and complicated grief when compared with traditional consultation-based approaches. Moreover, future studies should investigate whether integrating HCPs support throughout the illness trajectory improves clinician well-being, reduces burnout, and enhances the sustainability of PPC services. Future directions begin with training future HCPs during medical school through continuous training. Recent studies argue that medical educators should actively support students in developing effective coping skills in response to loss and provide stronger institutional support during times of bereavement (Shapiro et al. Reference Shapiro, Freeman and Nguyen2024). This is crucial, as it offers firsthand exposure to healthy approaches for managing grief and coping with the loss of patients. GBC must be tailored to the specific cultural, religious, and professional contexts in which HCPs practice and apply these skills. We recommend that, at the country or regional level, culturally sensitive guidelines be developed to ensure that GBC is delivered in a manner that best supports both HCPs and the patient populations they serve.
Beyond training and guideline development, future research must address a critical methodological gap in PPC: the limited validated culturally sensitive tools for assessing pain, grief, caregiver burden, symptom distress, and quality of life. In a systematic review conducted by Friedel et al., the authors report that studies assessing PPC instruments have been conducted predominantly in the United States, Europe, Australia, and Canada (Friedel et al. Reference Friedel, Aujoulat and Dubois2019). Furthermore, this systematic review found that the psychometric properties of the instruments used in this field are insufficiently documented. Their direct application to other cultural, religious, and socioeconomic contexts may therefore fail to capture culturally specific expressions of pain, suffering, coping, and meaning-making, particularly given that many cultures hold distinct beliefs regarding the meaning, origin, and role of pain that influence how patients interpret and perceive pain (Givler et al. Reference Givler, Bhatt and Maani-fogelman2025).
In regions such as Latin America, PPC is characterized by family-centered models that extend support to siblings and extended family members, as well as by the significant influence of cultural norms, social values, and religious affiliations on the perception and implementation of care (Zuniga-Villanueva et al. Reference Zuniga-Villanueva, Ramos-guerrero and Osio-saldaña2021). As noted by Zúñiga-Villanueva et al., currently available standards and quality indicators may not be entirely translatable to local settings, highlighting the potential limitations of applying instruments developed elsewhere (Zuniga-Villanueva et al. Reference Zuniga-Villanueva, Ramos-guerrero and Osio-saldaña2021). Future directions should therefore prioritize the cross-cultural adaptation and validation of PPC assessment tools, including observational pain scales, grief and bereavement instruments, caregiver burden measures, and quality-of-life indices. It is important to note that cross-cultural adaptation is not limited to linguistic translation but encompasses the adaptation and validation of instruments within the cultural context in which they are intended to be used, including conceptual equivalence, cultural relevance, and subsequent psychometric validation in the target population (Cruchinho et al. Reference Cruchinho, López-franco and Capelas2024). Such efforts are essential to ensure accurate symptom assessment, equitable care delivery, and meaningful comparison across international studies.
More recently, a review study found that several interventions may support the grief and bereavement process. These include facilitated speaking sessions led by counselors or clinicians, trauma-informed support and psychoeducation, cognitive behavioral therapy, multidimensional grief support, writing for recovery, culturally adapted meaning-centered psychotherapy, spiritual and religious interventions, family bereavement programs, homicide transformation projects, wilderness-based therapeutic retreats, and expressive approaches such as Chinese brush painting (Aeschlimann et al. Reference Aeschlimann, Heim and Killikelly2024). Further research is needed to fully elucidate which interventions are most effective across different populations and settings. Future studies should determine which culturally sensitive interventions are most effective at specific phases of the proposed framework and identify the optimal timing, intensity, and delivery methods for GBC across diverse pediatric populations.
Discussion/conclusion
Beyond the moment of diagnosis or loss, families of children with life-limiting conditions often experience a prolonged and evolving grief process that parallels the child’s clinical trajectory, marked by recurring uncertainty, clinical deterioration, and renewed emotional burden. Families may also experience grief related to the loss of the anticipated “healthy child.” This may occur in waves across the disease trajectory, intensifying with clinical deterioration and transfers across different hospital units and teams. This longitudinal nature of grief exposes the limitations of one-time assessments and underscores the need for repeated, developmentally appropriate, and family-centered screening throughout the disease course. Accordingly, a consistent multidisciplinary model that integrates genetics, pediatric subspecialties, obstetrics, and palliative care is essential to shift from reactive, crisis-driven interventions toward anticipatory, continuous, and coordinated GBC.
HCPs in the formative stages of training are frequently exposed to sustained patient interactions that foster meaningful emotional bonds, particularly through their involvement in routine and longitudinal care. Despite this early exposure, formal medical education rarely equips trainees to manage the emotional consequences of patient loss, often leading to emotional distancing or desensitization as self-protective strategies. On-the-job experiences may help HCPs develop emotional boundaries, coping strategies, and comfort with difficult conversations. Additionally, structured education in palliative care, including grief training prior to direct patient contact, may serve as a preventive intervention that fosters healthier emotional processing and resilience throughout medical training and professional practice (Phillips et al. Reference Phillips, Trainum and Thomas Hebdon2025). Responding to professional grief should be regarded not only as an individual wellness concern but also as a critical patient safety and workforce sustainability priority.
Although several studies support the early integration of palliative care, family-centered communication, and interdisciplinary support, the evidence base remains heterogeneous with respect to the optimal strategies for grief assessment, bereavement interventions, and implementation approaches. These knowledge gaps are particularly evident in low-resource settings and low- and middle-income countries, where access to PPC and grief support services remains limited.
We acknowledge several limitations of this study. Much of the existing literature on grief and bereavement focuses on adult populations, limiting the direct applicability of findings to pediatric settings. Additionally, studies involving HCPs may underestimate the true burden of grief, as HCPs may be less likely to seek help or formally report emotional distress. Published data also tend to reflect settings where data are actively collected rather than capturing the absence of programs or insufficient efforts to implement GBC. Furthermore, due to the emotional and developmental complexity of children, some pediatric studies rely on anecdotal reports from siblings, caregivers, or patients themselves. Furthermore, as a narrative review, this study did not employ a formal systematic search strategy, PRISMA-guided study selection process, or risk-of-bias assessment, and therefore may not have captured all relevant publications. Future research employing clearer, objectively defined parameters and pediatric-specific methodologies would be beneficial to strengthen the evidence base for GBC.
The principal contribution of this review is not the introduction of a new model of PPC but rather the adaptation of existing integrated care principles into a longitudinal framework for GBC implementation. While previous literature has described the IMOC and individual grief-related interventions, the proposed framework integrates these concepts into a practical approach spanning diagnosis, illness course, and bereavement. By incorporating routine assessment at key clinical transition points, interdisciplinary collaboration, developmentally appropriate interventions, and support for HCPs, we propose that this framework may provide a practical roadmap for translating existing knowledge into clinical practice.
We believe that a call to action is warranted, urging HCPs, health administrators, educators, and policymakers to foster ongoing dialogue aimed at improving patient outcomes. The effective screening and identification of different types of grief, followed by the implementation of IMOC to deliver GBC, may facilitate the timely initiation of culturally specific interventions that benefit patients, families, and HCPs alike. Embedding GBC as a core, continuous element of PPC represents not an optional enhancement but an ethical imperative to honor the lived experience of children, families, and those who care for them.
Acknowledgments
The authors thank the School of Medicine at the Universidad San Francisco de Quito (USFQ), the School for Mental Health and Neuroscience (MHeNs) at Maastricht University, and Lehigh Valley Hospital–Cedar Crest, a Jefferson Health affiliate, for their continued support of academic scholarship and medical education. During the preparation of this work, the authors used ChatGPT to check grammar and clarity of the text when needed. After using this tool, the authors reviewed and edited the content as needed and take full responsibility for the content of the publication. The Socratic Research Consortium is a collaborative group of recent medical graduates and medical students committed to the ethical and high-quality production of scientific research. The consortium functions as a mentorship-driven network in which experienced members teach rigorous research methodology and, in turn, empower trainees to mentor others. Its primary objective is to foster a sustainable research culture in regions where research opportunities are limited and funding is scarce. Through the pursuit of knowledge, critical inquiry, and open discussion, the consortium seeks to generate meaningful scholarship that contributes to the improvement of patient outcomes.
Author contributions
K.C., M.C.L., and K.Z. are co-first authors as they provided significant and equally contributions in collecting data, analysis, writing, and revised the final version. M.D., D.M., G.M., V.M., L.N., and E.V. are considered as group “co-second authors,” as they collected data, analyzed the information, and provided insightful intellectual input. J.M.C., V.C., S.D., P.S., and S.G. are grouped as “co-third,” they collected data and analyzed the information for later writing of the present article. K.C., M.C.L., and K.Z. introduced the topic, developed key definitions, and wrote the sections addressing grief and bereavement care for patients and families. They also supervised the writing of the other sections. M.D., D.M., G.M., V.M., L.N., and E.V. developed dedicated sections addressing key differences between adult and pediatric palliative care, as well as the role of congenital diseases and surgical input in grief and bereavement care. J.M.C., V.C., S.D., P.S., and S.G. wrote the section regarding GBC for HCPs, future steps, directions, and conclusion. K.Z. conceptualized, designed, and directed this work. M.G. revised the aspects of this article and provided feedback for a holistic approach. M.G. contributed to supervision and project administration. The listed authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of this manuscript are appropriately investigated and resolved.
Funding
This work was funded by the School of Medicine, Universidad San Francisco de Quito (USFQ), and the School for Mental Health and Neuroscience (MHeNs), Maastricht University.
Competing interests
The other authors declare no known competing financial interests or personal relationships that could have influenced the work reported in this paper.
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