Supporting the Family After the Death of a Child or Adolescent

The death of a child, no matter what the cause, is devastating.¹  The pediatrician is positioned to help family members adjust to the loss of a child and adapt to the ongoing effects of the child’s death. This clinical report identifies the key considerations for pediatric care teams supporting family caregivers and siblings through grief and suggests ways that pediatricians can commit to joining with grieving families.

Throughout this report, the term “family” is used to be inclusive of whomever the child and caregiver consider to be “family.” Additionally, throughout this report, the term “child” is used to be inclusive of pediatric and young adult patients from birth into early adulthood with recognition of the relational role of child to family caregiver. The term “caregiver” recognizes the unique special bonds with parents while inclusively honoring whether a guardian, step-parent, same-sex partner, foster parent, or grandparent serves in caregiver role. Specific age and developmental groups or relationships are highlighted where relevant.

Although childhood is generally presumed to be a time of health and development, the reality of pediatric death rates cannot be ignored and should not be minimized (Table 1).²  Each of these stark statistics represents not just a number but the loss of a loved child and a family grappling with grief.

The coronavirus disease 2019 pandemic revealed the vulnerability of even pediatric patients. By March 2022, approximately 355 children ages 0 through 4 years and 737 ages 5 through 18 years died of severe acute respiratory syndrome coronavirus 2 infection and related causes in the United States.³  Although American Indian/Alaska Native, Black, and Hispanic children represent 41% of the US population under age 20, they accounted for 78% of coronavirus disease 2019-related deaths in this age cohort.⁴ 

Grief reactions may include waves of sadness or sorrow, anguish, anger, emotional numbness, anxiety, and guilt for caregivers and siblings.^5,6  Because of the unpredictable and intense nature of grief, these emotions may be experienced less like waves and more like tsunamis by a grieving family. Grief impacts physical, existential or spiritual, psychological, social, cognitive, and behavioral domains.⁷  Grief is a natural reaction to the loss of a loved one that is unique to each individual and family, and it is important not to pathologize it, particularly in the early phases.⁸  Trauma can complicate grief, warranting attentiveness to trauma symptoms as well as grief symptoms. Families are often in need of both practical and emotional support at each stage of their grief journey.⁹  The pediatrician and the pediatric practice can be an important source of support and linkage to additional community resources as indicated.

A pediatrician can support families after the loss of a child by being present for the family in the time surrounding loss. Hospital staff should consider suspending visitor restrictions to accommodate family members being with the child during the time of death and surrounding death. The family may benefit from a private space and additional time to remain with their child and welcome loved ones (such as siblings or grandparents) after the death. Pediatricians may recognize the child by name and acknowledge the family’s grief. Depending on the relationship with the child and family, a pediatrician may consider inquiring about the family’s traditions for remembering loved ones, verbalizing ways that the child will be remembered, and considering ways caring for the child or family may impact future care efforts. A quiet presence and actively listening ear may also be appropriate. Expressions of sympathy are always appropriate even when there is concern for malpractice (the American Academy of Pediatrics policy statement on disclosure of adverse events in pediatrics¹⁰  serves as a further guide for conversations contextualized to scenarios of medical liability).

The timing of conversations about an autopsy requires personalization for each family and the circumstances surrounding the child’s death. Suggestions to improve autopsy discussions include having a trusted professional sensitively broach the topic through preparatory guidance and education.^11,12  Some bereaved caregivers report that having a first conversation about the clinical, emotional, or research domains of an autopsy before death would help with decision-making.¹³  The pediatrician may consider obtaining a copy of the autopsy report and offering to review it with the family to help discern how much or how little information would be preferred, to interpret the medical language, and to keep the lines of communication open. Follow-up conversations regarding autopsy results provide care teams the opportunity to create a safe space for processing the medical facts surrounding the child’s death while supporting emotions and remaining available for questions.

In the initial days after the child’s death, families will be faced with practical decisions to be made regarding the final disposition of the child’s body, funeral or memorial plans, communicating news of the child’s death with family and friends, and managing activities of daily living for themselves and any surviving children. The preferences of adolescents to serve as organ donors as they indicated at informed consent times, such as on their driver’s license, should be honored.

Families will have varying levels of social support networks.¹⁴  The pediatric practice can be helpful in reminding families about the importance of reaching out to resources in their lives, such as clergy, family, friends, neighbors, the child’s school community, work colleagues, medical providers, grief counselors, and others either in-person or via telehealth modalities. These resources are the “front line” of support for families and can be extremely helpful in managing the initial phase after the death.¹⁵  Pediatricians practicing in areas with significant gaps in support resources may wish to foster a staff member becoming familiar with online or written grief resources (see Resources section for a starting list) and access to telehealth subject matter expertise.

As the weeks and months after the child’s death pass, families absorb the inevitable shock of the death and move into new phases of their grief that are more emotionally laden and existential.^16,17  This process is rarely linear and instead occurs via a waxing and waning of experiences and an evolution of emotions over time. Pediatricians can be helpful in preparing the family to expect changes in their reactions to the child’s death over time and to expect that it will be a long and difficult process during which it will be important for them to be emotionally gentle with themselves and each other.¹⁸  It is during this time that some families are interested in being connected to bereavement support systems. The array of grief supports that are available is unique to each community. Hospitals, hospice and palliative care programs, funeral homes, social workers, community centers, support groups, and organizations focused on chronic illness can be excellent sources of information on bereavement support offerings.

Some communities experience disproportionate burden in the type of death a child experiences. In 2019, Black youth had a firearm mortality rate 4.3 times higher than that of white youth and a firearm homicide rate over 14 times higher than that of white youth.¹⁹  Public health disparities in the burden of preventable deaths warrant consideration of strategic policy, coordinated advocacy, and increased access to support specific to particular types of death within communities. It can be helpful for pediatric practices to maintain a list of advocacy groups, support services, and bereavement resources for families. There are also online resources to include diagnosis-specific organizations (muscular dystrophy, sickle cell disease, etc) that some caregivers may prefer to access, rather than attending in-person supports.

Grief theories have matured to recognize that grief is not a linear process that goes through predictable stages.²⁰  Rather, the different emotions associated with grief, such as denial, depression, anger, bargaining, and acceptance, may appear at any time and with varying combinations in different individuals and families. It is important to recognize that not all grief is expressed in the same manner or timeline. The diagnosis of “prolonged grief” is a formal diagnosis according to Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision criteria²¹  and entails loss over a year (may be longer based on social, cultural, or religious norms) with at least daily occurrence of 3 of the following symptoms during the prior month: identity disruption, marked sense of disbelief about the death, avoidance of reminders, intense emotional pain related to the death, difficulty with reintegration, emotional numbness, feeling that life is meaningless, and intense loneliness.²²  It is important to stress that sibling and caregiver grief does not carry a predictable timeline and that care should be taken to not pathologize continued grief in caregivers of children who have died, especially when considering grief after the death of a child.²³  Occasionally, the grief reaction causes continued or prolonged functional impairment or intense emotional suffering, including not being able to sleep and eat, work, care sensitively for their surviving children, maintain or regain social connections, and imagine a future. In these situations, referral to professional support, such as counseling, is indicated.^24,25  Consider early counseling for surviving siblings to address survivor’s guilt about being alive (particularly pertinent in acute causes of death occurring after the family experienced a shared traumatic event such as a natural disaster, gun violence, motor vehicle crash, etc).

In some communities, there are grief counselors specially trained to support grief processes. Many mental health specialists (psychiatrists, psychologists, couples and family therapists, social workers, and counselors) have some foundational knowledge in supporting people through the grief process and can assess the extent to which there is a need for more specific mental health focused interventions. In resource-limited settings, telehealth support options may be considered. The physician should recognize when the grieving process has started (realizing anticipatory grief often begins before the child’s actual death for families experiencing the loss of a child from a chronic or prolonged terminal illness) and make a careful suggestion to the family about a counselor while remaining sensitive to the family’s preference on the timing and acceptance of counseling support.

Family members cannot be expected to “move on” or “get over” the death of a child; instead, families benefit from receiving compassionate and comprehensive support as they attempt to adjust to the physical absence of their child while maintaining a sense of continued connection.^26–28  The process of living with the grief of losing a child has been described by bereaved families as learning to live with an empty seat at the table and a hole in the heart.²⁹ 

Racial and socioeconomic disparities in health outcomes and mortality exist for many pediatric chronic illnesses, including cardiomyopathy³⁰  and childhood cancer,³¹  among others.³²  Cancer is the leading disease-specific cause of death in older children and adolescents.² 

Congenital and chromosomal diagnoses are the leading biomedical causes of death for children ages 0 through 4 years. Grief often begins at diagnosis for families of children born with congenital diagnoses. Improved understanding about genetic transmission of some diagnoses has revealed unique grief support needs for families who may experience guilt surrounding heritable conditions or face multiple losses within one family unit.³³ 

Pediatric palliative care represents an essential early intervention to support quality of life for children, to help families find meaning in each day, and to offer a safe space for processing emotions and existential concerns. The palliative care team may serve as an additional form of interdisciplinary support specialized in grief principles and in helping to connect the family with additional resources, such as hospice services. For pediatric patients with an anticipated survival of 6 months or less if the diagnosis were to take a natural course, enrollment in the hospice benefit would avail continued curative or disease-directed treatments (concurrent care). Hospices are required to provide a minimum of 1 year of bereavement support after death occurs.

Anticipatory grief may occur before an expected death occurs.³⁴  The “anticipatory” descriptor applies to the timing of grief before death and does not necessarily translate into a caregiver feeling more prepared for or accepting of the child’s death.³⁵  In the setting of a child’s illness, parental grief often begins long before the actual moment of death as part of ongoing adaptation to daily losses. Grief fluctuates throughout the illness and wellness trajectory as the child’s condition changes over time, warranting early support for families.³⁶  A family experiencing the death of a child with a chronic condition may have already experienced a significant amount of chronic grief before the child’s death. Ambiguous loss is a type of loss that occurs when a loved one is physically present but increasingly absent (because of illness trajectory, decline in alertness, or psychologic or developmental regression) and, thus, grief is experienced as perpetual and painful.^37,38 

When a child or adolescent’s death results from a chronic illness or complex medical condition, it is likely that the pediatrician and other members of the care team have been involved in the patient’s care and may have a long-standing relationship with the family. Although the family may have been medically advised to anticipate a child’s shortened life span because of the medical condition or prognosis, the weight and profound heaviness of grief at the time of death is not lessened or diminished. Depending on the duration and proximity of the therapeutic relationship with the family surrounding the child’s illness or disability, the family also may suffer from the loss of the relationship with the pediatrician and other members of the care team and risks feeling abandoned. Under these circumstances, the pediatrician’s continuing involvement with the family may be especially meaningful and a form of professional fidelity.

Unexpected deaths often can cause sudden, intense feelings of anguish for families with significant lasting effects.^39,40  Sudden and unexpected infant deaths, including sudden infant death syndrome, accidental suffocation deaths, and ill-defined deaths, represent 3400 deaths per year in the United States and are the largest category of sudden and unexpected deaths in childhood.⁴¹  Motor vehicle crashes were cited as the leading cause of pediatric deaths for over half a century.⁴²  Beginning in 2017, firearms now represent the number one cause of death among persons ages 1 to 19 years.⁴³  Overall firearm-related fatalities involving children and adolescents in the United States increased 29.5% between 2019 and 2020.⁴²  Drug overdose and poisoning increased by 83.6% in this same time frame among children and adolescents, now representing the third leading cause of pediatric death.⁴² 

Pediatricians may not immediately be aware of the death in sudden circumstances. If there is a brief period of survival after the event, the pediatrician may be involved; however, unexpected deaths often occur at the scene, in transport, the emergency department, or in the ICU. In these situations, the emergency or critical care physician can inform the pediatrician of the death, including the details of the last hours of care. These details will often be what haunts the caregivers’ thoughts in the months after the death.^44,45  Pediatricians may hear about the death of a child or adolescent who was one of their patients from the news or community members. Pediatricians may be asked to complete the child’s death certificate. Even if the pediatrician was not involved in the care of the child at the time of the death, they can still play an important role in supporting the family.

When death occurs by suicide⁴⁶  or the use of alcohol or drugs,⁴⁷  the emotions experienced by caregivers can be particularly strong and complicated. When death occurs in the context of medical error or malpractice, mistrust of the health care system may further complicate acceptance of hospital-relevant bereavement support. Homicide or injuries that are caused by negligence, such as by drunk driving, often produce intense anger and may overwhelm a prior sense of justice, security, or peace. Pediatricians may consider additional thoughtfulness toward families’ mourning or guilt experiences after sudden and unexpected death as law enforcement, death scene investigation, and courts may be involved. Pediatricians can be prepared to help connect families in these complex circumstances to specialized help to include focused support groups and professional counseling services.^48,49  If the cause of a child’s death is concerning for nonaccidental trauma, special considerations beyond the scope of this statement must be addressed.^50,51 

In honor of children as vulnerable community members, pediatricians maintain a duty to continue advocating for public health measures that protect the lives of children and adolescents and subsequently decrease the number of grieving families.

Physicians often fail to appreciate the deep feelings of loss and sadness experienced by caregivers and families after fetal loss or miscarriage.⁵²  Part of recognizing the potential depth of these feelings includes providing support for pregnancy losses and stillbirths for families with whom the pediatrician has an existing relationship.^53,54 

Infant mortality, recognized as death of a child younger than 1 year of age, accounts for more than half of all childhood deaths in the United States. In 2020, infant mortality rates (IMRs) in the United States reached a record low of 5.4 deaths per 1000 live births.⁴  Glaring IMR inequity exists across racial and ethnic groups, with an IMR of 4.5 for non-Hispanic white infants, 5 for Hispanic infants, 7.9 for non-Hispanic American Indian/Alaska Native infants, 8.2 for Pacific Islander infants, and 10.6 for Black infants born in the United States in 2019.⁵⁵  Pediatricians ought to be cognizant of these inequities and understand the role that social drivers of health and structural racism have in driving these inequities, recognizing how these realities can complicate grief reactions.^56,57 

Guidance regarding grief is ideally individualized, with attention to relational context and roles within family units.⁵⁸  Often parents, aunts, uncles, cousins, and grandparents experience grief warranting inclusive support. Pediatricians may help families explore ongoing meaning making within and across generations,⁵⁹  particularly for grandparents and other members of extended families who experience the confounding grief of losing a child and deep care for additionally grieving relatives.^60,61 

Research has shown that how caregivers cope with the loss of a child has a direct correlation to how well their other children will fare over time.^62–64  Caregivers will understandably feel the burden of managing the normal responsibilities of caregiving, helping their surviving children manage grief, and at the same time processing their own grief. Some caregivers may start to have excessive worry about the well-being of the surviving children. Some report that their grief is so overwhelming that they feel unable to provide the surviving siblings with the attention they need. Thus, helping caregivers get support helps the surviving siblings.⁶⁵ 

Parts of the sibling’s routines, such as school or sports or community events, can provide some familiar structure to the sibling’s day in the midst of family change and transition. Returning to routines can help children feel more safe and secure; spending time with family in fun activities or routine activities they previously enjoyed does the same. It might also be important, depending on the circumstances of the child’s death, for parents to reassure the child they are safe, that their sibling’s death is not their fault, and that the parent and trusted adults are there for them. Children often process feelings through play and so families should recognize that playfulness is not disrespectful or failure to grieve and instead may be cherished as a restorative part of life even during loss. Creating space where children can talk about their sibling, recall memories of their sibling, and look at pictures of their sibling can be helpful. Listening in an attuned way and validating the sibling’s feelings represent important components of trauma-informed care for siblings.

The pediatrician is in a unique position to screen for grief impact and provide direct support to the siblings, both immediately after the child’s death and in subsequent years as they follow and care for the siblings’ health.⁶⁶  The bereavement experience of siblings may be long lasting.^67,68  The loss of the sibling is absolute, and its effect ripples through virtually every aspect of the siblings’ lives: family, school, social interactions, extracurricular activities, and inner emotional life. Grief may present as anger outbursts, sleep disruption, behavioral issues at school, and/or social withdrawal.⁶⁹  It is also common for children to move back and forth frequently between expressions of grief within a single day, and even within a single hour.^70,71  Research has shown that during the first year after the child’s death, there are increases in anxiety, depression, and illicit substance use in the siblings before returning to baseline.^72,73  Adolescent-specific bereavement needs may be additionally exacerbated by the high level of identity transition already occurring as part of adolescence.^74,75  An extended period in which an adolescent sibling loses interest in daily activities and events, is unable to sleep or fears being alone, repeats statements of wanting to join the dead sibling, withdraws from peers, experiences a sharp decline in school performance, or refuses to attend school warrant heightened concern.

Initially, and especially if the death of the child has been sudden and unexpected, the caregivers may be overwhelmed by their own grief and, thus, less able to tend to each surviving sibling’s physical and emotional needs. Younger children requiring more intensive day-to-day care for things such as feeding and clothing may be especially at risk, but the needs of older children, who may be experiencing untended emotional needs, also warrant attention. Regardless of the age of the siblings, care from extended family or close friends can be a short- or medium-term bridge while the caregivers absorb the initial shock. When family or friends are not available, other social services may need to be recruited to provide support.

The way siblings respond to the death of a sibling of any age varies depending on the developmental stage of the sibling, including how they understand the concept of death. This response changes as the sibling matures (Table 2)⁷⁶  and may also be influenced by the personality of the sibling, the sibling’s preexisting mental health, family life stability after the loss, how the sibling’s needs are met, parental coping styles with stress, and any experience with prior loss.⁷⁷  Additional issues relevant to siblings include survivor guilt, overprotection of the surviving child, the “replacement” or subsequent children, parentification of the surviving child, becoming an only child, new responsibilities for the surviving child, and risk of parent-child role reversal.^78,79  If the death is attributable to a genetic diagnosis and the sibling has not been tested, the pediatrician can discuss testing with the family with sensitive timing. Pediatricians may caringly watch for and even inquire about surviving sibling experiences as part of pediatrician-family interactions (Table 3). Pediatricians can also provide grieving parents with anticipatory guidance on how to identify and address present and future grief reactions that can occur among their surviving children.

One of the most common responses to the death of a sibling is survivor guilt, especially in situations of unexpected death.⁸⁰  It can be beneficial for the pediatrician to reassure and gently explain to the sibling (aged preschool and up) how their thoughts, words, or actions in no way caused their sibling’s death. Fear may occur in accidental or abusive deaths if the sibling feels they “didn’t do enough” to save their sibling. Sibling guilt is also common and especially problematic if the sibling was a donor (eg, bone marrow) and the treatment was not successful.⁸¹  Again, in these situations, it can be beneficial to reassure the sibling about the lack of responsibility regarding the child’s death. All these associated thoughts and memories have the potential to become emotionally crippling unless talked about and processed in counseling or psychotherapy.⁸² 

Caregivers commonly fear that their surviving child or children will also die.⁸³  These fears and the associated anxiety may lead to an atmosphere of anxiety in the home as well as problematic overprotection of surviving siblings, such as restricting age-appropriate activities.⁸⁴  Behavior problems in these siblings may stem from a fear that they may also die or from the feelings of the need to break free from stifling overprotection. The pediatrician can be sensitive to these possibilities and assess the situation as able, through conversations with the sibling directly and/or with the caregivers. If significant overprotection is suspected, the pediatrician can help the caregiver understand that although fearful overprotection may be part of the coping process, it can be harmful to siblings. The pediatrician can then help families access support through professional counseling.

After the death of a child, caregivers and extended family may speak often of the child, put up many photos around the house, leave the child’s bedroom untouched, and/or develop rituals to honor the child. These activities may help caregivers process grief and honor the child who is now missing. Surviving children benefit from open conversations about memories and special family moments with opportunity for them to ask questions and participate without feeling pressured. Siblings may worry that they do not measure up to the child who has died, or they may feel neglected or experience feelings of jealousy or resentment.⁸⁵  In instances when an infant is born after the death of the child, existing siblings may also worry that they were not enough, and the newest child may grow to believe that they were born to replace the sibling who died.^86,87  Such feelings may impact one’s sense of identity and may lead to behavioral problems in the siblings.⁸⁸  The pediatrician can be aware of these potential dynamics, vigilantly assess for their presence, and offer counsel to the family when guidance is needed. With time and helpful support, the desire to honor the loved one who is gone can be balanced with attention and care for the surviving siblings in a way that is healing and healthy.

Older siblings commonly assume a parental role when caregivers are absorbed with their own grief.⁸⁴  Although this reaction may be adaptive in the early months of the caregivers’ grief journey, it may become maladaptive if it continues. The pediatrician can look for situations of parentification of older siblings and help the caregiver and surviving sibling to relinquish this distortion of family roles.⁸⁹ 

The loss of a sibling includes loss of the roles inherent in the relationship the surviving children had with their sibling.⁹⁰  For example, if the child had been living with illness, the surviving siblings may have played roles as helping caregivers. It is important to note that the children may not be sharing their feelings of loss or sadness with their caregivers because they do not want to burden the caregivers further.⁹¹  With the understanding of the family structure and dynamics, the pediatrician is well-positioned to assess for those relationships. The pediatrician can also assess for prior experiences with loss that the sibling may have—the death of a grandparent or pet, a divorce, or a move—that may inform the reaction to this new loss.

Providing support to siblings shortly after the death of their sibling will also include assessing the child’s understanding of what has happened.^76,89  The pediatrician may feel equipped based on their training in child development and communication to talk with children about death or to advise the caregivers in how to talk to the children about death and to support ongoing sibling sense of connection.⁹²  At a minimum, the pediatrician can be a bridge to help find professional support for the children so that they have a safe place or way to express their feelings.

As the sibling matures and develops, the pediatrician can track emotional development and inquire specifically about how the sibling is experiencing the grief over time.⁹³  A pediatrician may consider placing a reminder message of a deceased sibling in the electronic or paper medical record as a reminder to the care team whenever a patient is being seen. The well-child visit is an especially appropriate time to communicate care and assess for grief. It is important that pediatricians gently invite siblings and caregivers to share about how they are currently experiencing their grief. Sensitive questions can begin these conversations (Table 3). Even if a sibling or caregiver of the deceased child chooses not to respond at length, they may appreciate having their child or sibling remembered and the questions clearly demonstrate that the provider is a caring resource. Cultivating compassion via active listening to the family members and acknowledging their grief is important for healing.

Although the child may not wish to discuss their sibling who has died, this reaction may change over time.⁹⁴  It is always a good idea to name the loss gently and give the child permission to speak about their feelings and struggles. A prompt from a trusted person normalizes the grief and opens the door, in a safe place, for the child to process a life-changing event for which the impact shifts over time.⁹⁵ 

In addition to the clinical encounter, pediatricians may recommend professional grief support for the siblings. This support may be in the form of one or more of the following: one-on-one work with a professional therapist, summer camps, one-on-one work with a school counselor, or a support group with other bereaved siblings, which helps the child see that they are not alone. The pediatrician can be an effective resource by facilitating referral and linkage for families to have access to the appropriate and available mental health providers and support groups and organizations in the community. Peer support groups are preventive in nature and appropriate for most bereaved siblings, whereas psychosocial treatments by professionally trained personnel are appropriate to address severe or persistent grief experienced by a subset of the bereaved.⁹⁶  Research has shown that children are resilient and that with effective grief supports—family, community, professional—they can process the loss and adapt to life without their sibling.⁶⁹  There are many excellent children’s books as well as adolescent and young adult or teen books that deal with the death experience that may be helpful.^97,98 

Grief is both a universal and deeply personal phenomenon; however, culture influences all aspects of the grief experience in fundamental ways.⁵  Cultural differences exist not only between religions and cultures, but also within subgroups of the same culture or religion. Knowledge of all the different variations in the meaning and practices surrounding bereavement is not possible, but an understanding of the different dimensions of the grief process may be helpful to guide the clinician in navigating this subject with families of diverse cultural and religious backgrounds.⁹⁹  The following are aspects of grief and bereavement that are influenced by culture.

Different cultural groups often have common understandings of the meaning of death. These are often heavily influenced by religious, spiritual, or existential beliefs.¹⁰⁰  Although a belief in the immortality of the soul and a life after death is a common theme, the emphasis and details of what happens after death vary significantly between religions.¹⁰¹  Additionally, some religions posit that all life events, including death, are predetermined and, therefore, could not have been prevented. This belief tends to reduce the prominence of guilt as an emotion observed among mourners. Little is known about whether and how these beliefs influence the internal experience of grief.¹⁰² 

Some cultures may allow, normalize, or encourage the outward expression of emotional pain as a healthier alternative to “bottling” up of emotions and suffering internally.¹⁰³  In these cultures, the outward expression of grief may be expected and lack thereof may be interpreted as apathy or as a sign of not caring about the person who died. Other cultures value restraint in the expression of emotions and value “stoicism.” Again, little is known about the corresponding internal cognitive or emotional experiences associated with loss in different cultures.

Hospital chaplains may be offered as a resource in helping families facing loss. Chaplains can help provide access to cultural practices surrounding terminal diagnoses or religious traditions such as last rites. Hospital chaplains may serve as a direct support for caregivers and may additionally help connect interested families with members of communities with which the family identifies.

The role of religious figures in the practices surrounding death and in the spiritual care of the bereaved varies across cultures and religions. For example, Islamic religion has no priesthood and religious leaders do not have a spiritual authority. Their role tends to be restricted to knowledge and implementation of the religious laws and traditions. In Christianity, priests or pastors may be viewed as being endowed with spiritual insight or authority. In Judaism, the rabbi may serve as a spiritual leader and religious teacher. Religious leaders may have varying levels of involvement or engagement in providing spiritual guidance and comfort for the bereaved based on spiritual role within the community and family preference. Cultural factors may significantly influence practices and traditions among groups even within the same religion.

Traditions associated with burial are also influenced by religious traditions. Rituals surrounding the timing of burial and the treatment of the deceased body, including washing, embalming, and viewing of the deceased vary widely between religious and cultural groups.¹⁰⁴  For example, although in some cultures cremation is the norm for treatment of the body, other cultures consider cremation as mutilation of the body. In some cultures, all medical equipment, such as breathing tubes or intravenous lines, are required to remain with the body for burial rather than to undergo removal after time of death.¹⁰⁵ 

Mourning traditions may also be culturally driven and often impact the societal expectations of acceptable behavior of the bereaved.¹⁰⁶  The amount and quality of emotional and material support provided to the bereaved may vary, with some societies providing the bereaved with traditionally set periods of companionship, food, and other material support.¹⁰⁷  Cultural traditions may also govern the length of mourning period and assign different mourning roles and periods to family members.

Gender differences in the expression of grief is present across societies, with men often expected to show more restraint in the expression of pain than women in certain cultures and communities.¹⁰⁸  Additionally, the gender of a deceased child may have special implications in certain societies. For example, in some patriarchal societies, a male child provides an important economic advantage for families. In some matriarchal societies, a female child may be valued for future caregiving roles for aging relatives. Therefore, the loss of a child can have a social or relational significance extending beyond what is customarily observed during bereavement.

Culture determines the nature of relationships between individuals and often the strength of the emotional attachment within these relationships. Most cultures acknowledge the strong attachment that caregivers have with their children. However, in some societies in which infant and child mortality is high and children are not uniformly expected to survive, caregivers may intentionally avoid strong emotional attachment with young infants and children to protect themselves from the intense emotions associated with bereavement. This may be perceived as abnormal or callous in other cultures in which the loss of a young infant or a child is a rare and unexpected occurrence.

Cultural and religious attitudes toward suicide may complicate the bereavement process. These may include the heightened social stigma associated with mental illness and suicide in some cultures.¹⁰⁹  Death attributable to mass casualties, such as school shootings,¹¹⁰  war,¹¹¹  or political conflict, may also be associated with a unique set of complex emotions including guilt at having survived or having been positioned in a place of conflict, or at delaying grief because of preoccupation with one’s own survival. Also, grief for death by war can be exacerbated by multiple deaths and by the loss of social and material support systems. In addition to religion, tradition, and geography, cultural variations based on political history and collective trauma of a people may influence their concept of death and grieving. Acute loss and bereavement may be compounded by the historical trauma and continuing inequities, marginalization, and dispossession. Social and structural inequities exist in access to bereavement support according to racial and ethnic, rural and urban, socioeconomic, and educational domains.¹¹² 

The death of an infant, child, or adolescent is a devastating and traumatic experience for a family. The pediatrician can consider tangible forms of care, such as writing a personalized condolence letter or making a phone call to acknowledge the family’s loss, affirm the dignity of the patient, and share empathy.¹¹³  Content may be personalized with the child’s name and a special memory of the child.¹¹⁴  The pediatrician may consider offering continued ongoing correspondence with the family at special times, such as the child’s birthday, the anniversary of the child’s death, or special holidays for the family. Pediatricians may consider attending a celebration of the child’s life or funeral service in honor of the child based on existing relationship with the family.¹¹⁵ 

Pediatricians have a special role in honoring culture as part of grief care.⁹⁸  Welcoming a conversation with the family about their traditions and preferences may be helpful and appreciated by the family. Showing respectful and sensitive interest in the cultural traditions of families is not only helpful in improving the clinician’s knowledge and cultural competence and awareness but can also be helpful in building trust with the family.¹⁰⁴  Although it may feel awkward, humbly and sensitively asking families directly about their preferences is recommended and usually well received.¹¹⁶ 

Pediatricians may be in a unique position to offer grief resources to the child’s school through child life services or social work or other interdisciplinary expertise. Pediatricians may consider extending support to other families or children at the pediatric practice who may know the child or family as well as office staff. Pediatricians benefit from acknowledging the impact of a child’s death on their own well-being with attentiveness to caring for oneself and one another as a professional community.

The pediatrician is in a special position to help families through their grief experience and can partner with interdisciplinary colleagues and community resources to maximize support for families.¹¹⁷  The ultimate goal of such support is to help bereaved families realize they are not alone, to foster a culturally sensitive, trauma-informed approach to grief, to maximize adjustment and adaptation after the death of a child, and to promote the best interests of a grieving family.¹¹⁸ 

Pediatricians should consider the following regarding this support:

1. Respect that compassion is a universal language of care and can be expressed through taking the time to listen and provide emotional support to a family.

2. Realize how knowledge about the structure of a family and their intrafamilial and extrafamilial support systems may be important in recognizing each family’s unique needs and may be helpful in understanding some of the cultural aspects of the family’s concept of health and illness as well as death and dying.

3. Consult with resources to learn about the cultural and religious traditions surrounding death and bereavement to include culturally appropriate parental roles of grieving.¹⁰⁶ 

4. Become aware of personal beliefs, values, and practices about grief and death and reflect on how these may bring implicit and explicit biases; consider opportunities for formal training in cultural humility, cultural sensitivity, and implicit bias.¹¹⁹ 

5. Recognize that failing to acknowledge the death of an infant, child, or adolescent who was a patient can contribute to the family’s pain. Pediatricians should consider visiting their seriously ill or dying patients in the emergency department or PICU, as able. A telephone call or a face-to-face visit with the caregiver(s) of a patient who has died is encouraged.

6. Follow-up with and provide guidance to surviving siblings who are still patients. Providing guidance to siblings requires recognition of the special issues experienced by grieving siblings.

7. Recognize the potential of support groups in helping caregivers adapt to grief after their child’s death to include substance misuse resources, as may be relevant. Be aware of the presence of such groups in the community and provide this information to families, support families in finding support groups and organizations with their permission, and if families initially decline, then gently reassess whether they are interested in this information in the future.

8. Be aware that when the death of a child or adolescent is unexpected or sudden, such as by suicide, through the use of alcohol or drugs, from sudden and unexpected infant deaths, in a motor vehicle crash, or through homicide, the grief for caregivers may be especially intense and accompanied by guilt and/or anger.

9. Consider referral for counseling or psychotherapy as additional layers of support for families experiencing the death of a child.

10. Understand that the duration of grieving within a family after the loss of a child is longer than many expect, and families often hold a cherished, forever connection to the child.

• The American Academy of Pediatrics Resilience Curriculum: Resilience in the Face of Grief and Loss. Web site: https://www.aap.org/en/learning/resilience-curriculum-resilience-in-the-face-of-grief-and-loss/

• The Compassionate Friends. A national self-help support organization with >600 local chapters. Many local chapters have special groups for siblings. Web site: http://www.compassionatefriends.org

• Courageous Parents Network. A nonprofit organization with resources – including professionally produced videos of bereaved parents – for families caring for children living with serious illness, including bereavement materials for parents, grandparents, and siblings. Web site: https://courageousparentsnetwork.org/

• The Dougy Center. A nonprofit providing support to grieving children. Web site: https://www.dougy.org/

• Family to Family Health Information Centers. Family-led centers funded by the Health Resources and Services Administration (HRSA) staffed by knowledgeable, skilled family members with first-hand experiences and understanding of challenged faced by families of children with complex, diverse needs. Web site: https://familyvoices.org/lfpp/f2fs/

• First Candle. Support for families who have experienced a stillbirth or the loss of an infant. Web site: http://firstcandle.org

• National Alliance for Children’s Grief. Feature enables a search of individual and group support by state. Web site: http://www/nacg.org/find-support

• National Alliance for Grieving Children. A nonprofit organization that raises awareness about the needs of children and teens who are grieving a death and provides education and resources for anyone who supports them. The search feature enables a search for support groups by state. Web site: https://childrengrieve.org/find-support

• Missing Pieces. A coalition to support the availability and quality of resources for those impacted by pediatric deaths through education, program development, and collaboration. Web site: https://www.missingpiecesgrief.org/

• National Alliance on Mental Illness (NAMI). A grassroots organization dedicated to building better lives for those affected by mental illness. Web site: https://nami.org/Home

• SHARE. Support for those touched by the death of an infant through miscarriage, stillbirth, or newborn death. Web site: http://www.nationalshare.org

• Sudden Unexplained Death in Childhood (SUDC) Foundation. Foundation with a mission to promote awareness, advocate for, and support those affected by sudden unexpected or unexplained death in childhood. Web site: https://sudc.org/#

• Survivors of Suicide. Support for those who have lost a loved one to suicide. Web site: http://www.survivorsofsuicide.com

• Camps for grieving siblings such as Bereavement Camps, Siblings Grief Camps at Sudden Unexplained Death in Childhood Foundation, or Military One Source. Web site: https://www.militaryonesource.mil/casualty-assistance/grief-support/bereavement-camps-a-place-to-grieve-and-heal

• Hotline – 988 Suicide and Crisis Lifeline – Available 24 hours per day in English and Spanish

Meaghann S. Weaver, MD, PhD, MPH, FAAP

Arwa Nasir, MBBS, MSc, MPH, FAAP

Blyth T. Lord, EdM

Amy Starin, PhD, LCSW

Jennifer S. Linebarger, MD, MPH, FAAP (Contributing Author)

Arwa Nasir, MBBS, MSc, MPH, FAAP, Chairperson

Evelyn Berger-Jenkins, MD, FAAP

Beth Ellen Davis, MD, MPH, FAAP

Paul H. Dworkin, MD, FAAP

Tiffani Jenae Johnson, MD, FAAP

Irene P. Mathieu, MD, FAAP

Natasha Kapoor Sriraman, MD, MPH, FABM, FAAP

Kathleen Hobson Davis – Family Liaison

Anne Debattista – National Association of Pediatric Nurse Practitioners

Heather Fraser – National Association of Social Workers

Abigail Boden Schlesinger, MD – American Academy of Child and Adolescent Psychiatry

Zoe H. Warczak, MD – Section on Pediatric Trainees

Robyn Wheatley, MPH

Tamar Magarik Haro

Omonigho Ufomata

Jeffrey C. Klick, MD, FAAP, Chairperson

Renee Denise Boss, MD, FAAP

Christopher Alexander Collura, MD, FAAP

Khaliah Johnson, MD, FAAP

Elissa Miller, MD, FAAP

Conrad S.P. Williams, MD, FAAP

Jennifer S. Linebarger, MD, MPH, FAAP, Immediate Past Chairperson

Lisa Michelle Humphrey, MD, FAAP

Tolúwalàsé Ajayi, MD, FAAP – American Academy of Hospice and Palliative Medicine

Anna Laughman, MD – Section on Pediatric Trainee Liaison

Blyth T. Lord, EdM – Courageous Parents Network

Alexandra Kuznetsov

Tamar Magarik Haro