CLINICAL REPORT Guidance for the Clinician in Rendering Pediatric Care

Supporting the Grieving Child and Family David J. Schonfeld, MD, FAAP, Thomas Demaria, PhD, COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH, DISASTER PREPAREDNESS ADVISORY COUNCIL

The death of someone close to a child often has a profound and lifelong abstract effect on the child and results in a range of both short- and long-term reactions. Pediatricians, within a patient-centered medical home, are in an excellent position to provide anticipatory guidance to caregivers and This document is copyrighted and is property of the American to offer assistance and support to children and families who are grieving. Academy of Pediatrics and its Board of Directors. All authors have fi led confl ict of interest statements with the American Academy This clinical report offers practical suggestions on how to talk with of Pediatrics. Any confl icts have been resolved through a process grieving children to help them better understand what has happened and approved by the Board of Directors. The American Academy of Pediatrics has neither solicited nor accepted any commercial its implications and to address any misinformation, misinterpretations, involvement in the development of the content of this publication. or misconceptions. An understanding of guilt, shame, and other common Clinical reports from the American Academy of Pediatrics benefi t from reactions, as well an appreciation of the role of secondary losses and expertise and resources of liaisons and internal (AAP) and external reviewers. However, clinical reports from the American Academy of the unique challenges facing children in communities characterized by Pediatrics may not refl ect the views of the liaisons or the organizations chronic trauma and cumulative loss, will help the pediatrician to address or government agencies that they represent. factors that may impair grieving and children’s adjustment and to identify The guidance in this report does not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking complicated mourning and situations when professional counseling is into account individual circumstances, may be appropriate. indicated. Advice on how to support children’s participation in funerals All clinical reports from the American Academy of Pediatrics and other memorial services and to anticipate and address grief triggers automatically expire 5 years after publication unless reaffi rmed, revised, or retired at or before that time. and anniversary reactions is provided so that pediatricians are in a better DOI: 10.1542/peds.2016-2147 position to advise caregivers and to offer consultation to schools, early education and child care facilities, and other child congregate care sites. Accepted for publication Jun 27, 2016 Pediatricians often enter their profession out of a profound desire to PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). minimize the suffering of children and may fi nd it personally challenging Copyright © 2016 by the American Academy of Pediatrics when they fi nd themselves in situations in which they are asked to bear FINANCIAL DISCLOSURE: The authors have indicated they do witness to the distress of children who are acutely grieving. The importance not have a fi nancial relationship relevant to this article to of professional preparation and self-care is therefore emphasized, and disclose. resources are recommended. FUNDING: No external funding. POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential confl icts of interest to disclose. INTRODUCTION At some point in their childhood, the vast majority of children will To cite: Schonfeld DJ, Demaria T, AAP COMMITTEE ON experience the death of a close family member or friend 1, 2; approximately PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH, 1 in 20 children in the United States experiences the death of a parent DISASTER PREPAREDNESS ADVISORY COUNCIL. Supporting the Grieving Child and Family. Pediatrics. 2016;138(3):e20162147 by the age of 16. 3 Despite the high prevalence of bereavement among

Downloaded from www.aappublications.org/news by guest on October 1, 2021 PEDIATRICS Volume 138 , number 3 , September 2016 :e 20162147 FROM THE AMERICAN ACADEMY OF PEDIATRICS children, many pediatricians are introduced some of the key issues that surviving adults may not have uncomfortable talking with and that pediatricians should consider yet appreciated (eg, “I don’t know if supporting grieving children. 4 in providing support to grieving I ever will feel comfortable having 7 Bereavement is a normative children. Guidance is available my own children when I grow up, experience that is universal in nature, elsewhere regarding how to support without Mom there to help me.”). but this does not minimize the impact families faced with the impending When children ask such questions or 4, 8 of a loss. The death of someone close or recent death of their child, make similar comments, surviving to a child often has a profound and including practical advice on how family members may become lifelong effect on the child and may to approach notification of parents tearful and/or obviously upset. result in a range of both short- and about the death of their child in a Children may misinterpret these 8,9 long-term reactions. Pediatricians, hospital setting or in the unique expressions of grief triggered by 10 within a patient-centered medical context of a disaster. Because their questions as evidence that the home, are in an excellent position traumatic events often involve loss, questions themselves were hurtful to provide anticipatory guidance to complementary information on or inappropriate. They subsequently caregivers before, during, and after providing psychosocial support in the may remain silent and grieve alone, a loss and can provide assistance aftermath of a crisis can be found in a without support. In addition, when 11 and support in a number of areas, recent clinical report, which may be children lose a parent or other close including the following: particularly relevant to pediatricians family member, they are often fearful providing care in emergency that others they count on for support • exploring and confirming that departments and intensive care may also die and leave them all alone. children understand what has settings. Children may find it particularly occurred and what death means; unsettling to observe their surviving • helping to identify reactions such caregivers struggling and often as guilt, fear, worry, or depressive IDENTIFYING CHILDREN’S LOSS respond to their surviving parent(s) symptoms that suggest the need EXPERIENCES demonstrations of grief by offering for further discussion or services; support or assistance (eg, “Don’t In a busy pediatric practice, it is likely worry Daddy, I can help do many of • providing reassurance to children that a pediatrician interacts with a the things Mommy used to do; we who become concerned about child who is grieving a death virtually are going to be okay.”), rather than their own health or those of family every week, if not every day. But asking for help themselves, which members; many children who are grieving show may convince surviving caregiver(s) • few outward signs during an office offering support to grieving that the child is coping and has no visit. From an early age, children children and their families to need for assistance. For this reason, learn that questions or discussion minimize their distress and it is important for pediatricians to about death make many adults accelerate their adjustment; offer to speak with children privately uncomfortable; they learn not to talk • informing families about local after a family death to identify about death in public. In the context resources that can provide their understanding, concerns, and of a recent death, children may additional assistance; and reactions without children feeling also be reluctant to further burden that they need to protect surviving • offering advice on funeral grieving family members with their caregivers. attendance of children. own concerns. Pediatricians also can play an Children’s questions about the Caregivers who are struggling with important role in supporting impact of a personal loss can be their own personal grief may be parents and other caregivers after quite poignant and/or frame the particularly reluctant, or even unable, the death of a child, even in the experience in concrete and direct to recognize or accept their children’s 4–6 absence of surviving siblings. In terms that underscore the immediacy grief. The reality is that many addition, children may experience and reality of the loss to adults children in this situation are grieving grief in response to a range of other (eg, “If Mommy died, does that alone, postponing expressing their losses, such as separation from mean that she won’t be here even grief until a time when it feels safer, parents because of deployment, for my birthday? How can I live or seeking support elsewhere, such incarceration, or divorce, which the rest of my life without her?”). as at school or after-school programs may be helped by similar caring Adolescents who are in a better where they can talk about their strategies. position to appreciate the secondary feelings and concerns with adults This clinical report is a revision losses and other implications of a who have personal distance from the of an earlier clinical report that significant loss may raise concerns loss.

Downloaded from www.aappublications.org/news by guest on October 1, 2021 e2 FROM THE AMERICAN ACADEMY OF PEDIATRICS Young children, in particular, may school, or within the community tolerating the unpleasant affect can not yet understand the implications have occurred or are anticipated. 12 be very helpful. the death may have for them or their Practices that respond to these needs • Invite discussion using open-ended family. Children and their families as they arise in families, by inviting questions such as “How are you may wish to seek advice but view conversations, expressing concern, doing since your mother died?” or death as a normative experience and offering information and referral, “How is your family coping?” that does not warrant professional create an atmosphere in which assistance and may not realize that families are more likely to disclose • Limit the sharing of your personal their pediatrician may be interested their occurrence and actively seek experiences. Keep the focus on the in helping and able to assist them. assistance and support. child’s loss and feelings. During an incidental pediatric office • Offer practical advice, such as visit, children may be reluctant suggestions about how to answer to raise the topic because they INITIATING THE CONVERSATION questions that might be posed by worry that they will start crying or Pediatricians and other caring adults peers or how to talk with teachers otherwise embarrass themselves. often worry that asking children about learning challenges. They may be afraid to start a about the recent death of someone discussion in the pediatric office or at • Offer appropriate reassurance. Do close to them may upset them. school because they worry that once not minimize children’s concerns In the immediate aftermath of a they start to cry, they will be unable but let them know that over major loss, the loss is almost always to compose themselves by the end time you do expect that they will on survivors’ minds. Although a of an office visit or a conversation become better able to cope with question about the death may lead at school. Children may also express their distress. to an expression of sadness, it is the their grief indirectly through their death itself, and not the question, that • Communicate your availability behavior or attempt to address their is the cause of the distress. Inviting to provide support over time. Do feelings through play. Grief is, in children to express their feelings not require children or families to many ways, a private experience. allows them to express their sadness; reach out to you for such support, Older children, especially, may elect it does not cause it. In contrast, but rather, make the effort to to keep their feelings and concerns avoiding the subject may create more schedule follow-up appointments to themselves unless caring adults problems. Children may interpret and reach out by phone or e-mail invite and facilitate discussion. the silence as evidence that adults periodically. These are among the many reasons are unaware of their loss, feel that why pediatricians may be unaware Adults are often worried that they their loss is trivial and unworthy of of a death involving a close family will say the wrong thing and make comment, are disinterested in their member or friend of one of their matters worse. In the context of grief, are unwilling or unable to patients. talking with a patient who has assist, or view the child as unable to recently experienced a death, cope even with support. Instead, the Pediatricians can increase the caregivers may wish to consider the following steps can be used to initiate likelihood that children and families following suggestions 13: the conversation 13: will bring significant losses to their • Although well intentioned, attention by directly informing • Express your concern. It is okay attempts to “cheer up” individuals families, often during the initial to be tearful or simply to let them who are grieving are usually visit and periodically thereafter, know you feel sorry someone they neither effective nor appreciated. that they are interested in hearing care about has died. Anything that begins with “at least” about major changes in the lives • Be genuine; children can tell when should be reconsidered (eg, “at of patients and their families, such adults are authentic. Do not tell the least he isn’t in pain anymore,” “at as deaths of family members or child you will miss her grandfather least you have another brother”). friends, financial or marital concerns if you have never met him; instead, Such comments may minimize of the family, planned or recent let the child know that you professionals’ discomfort in being moves, traumatic events in the appreciate that he was important with a child who is grieving but do local community or neighborhood, to her and you feel sorry she had to not help children express and cope or problems or concerns at school experience such a loss. with their feelings. or with peer relationships. At subsequent visits, pediatricians can • Listen and observe; talk less. • Do not instruct children to hide ask whether any major changes Simply being present while the their emotions (eg, “You need to or potential stressors at home, at child is expressing grief and be strong; you are the man of the

Downloaded from www.aappublications.org/news by guest on October 1, 2021 PEDIATRICS Volume 138 , number 3 , September 2016 e3 house now that your father has personal loss (eg, Guiding Your Child to 7 years of age. Personal loss or a died.”). Through Grief is one such resource terminal illness before this age has for older children15 ) can be found been associated with a precocious • Avoid communicating that you through recommendations of a understanding of these concepts 19; know how they feel (eg, “I know children’s librarian or at bookstores. education has been shown to exactly what you are going Pediatricians can identify a few books accelerate children’s understanding through.”). Instead, ask them to to recommend and, ideally, may even as well. 20 The death of a pet in share their feelings. choose to stock their offices with a early childhood can be used as an • Do not tell them how they ought to couple of copies to lend to families. opportunity to help young children feel (“You must feel angry.”). both understand death and learn to express and cope with loss. • Avoid comparisons with your CHILDREN’S DEVELOPMENTAL own experiences. When adults UNDERSTANDING OF DEATH Understanding the concepts of share their own experiences in the death can be viewed as a necessary context of recent loss, it shifts the Before the development of object precondition, but not necessarily focus away from the child. If your permanence, something out of view sufficient, for acceptance and loss is perceived by the child as is felt to be literally “out of mind.” adjustment. Children at a very less important, the comparison can Therefore, it is unlikely that infants young age can understand that be insulting (eg, “I know what you in their first 6 months of life can truly death is irreversible; indeed, even are going through after the death grieve. But as children develop object toddlers come to learn “all-gone.” of your father. My cat died this permanence during the second half But accepting that someone about week.”). If your experience appears of the first year of life, they begin to whom you care deeply will never worse (eg, “I understand your acquire the ability to appreciate the return is difficult even for adults. grandfather died. When I was your possibility of true loss. It is therefore Pediatricians can counsel parents age, both my mother and father not coincidental that peek-a-boo to help children understand these died in a car accident.”), the child emerges during this time period concepts and assess children’s may feel compelled to comfort you as a game played by children in all comprehension directly through and be reluctant to ask for help. cultures, wherein the child shows simple questions. Parents can be heightened concern at separation encouraged to be patient with The use of expressive techniques, and joy at reunion, as if “playing” children’s repetitive questions after such as picture drawing or with the idea of loss. Infants and a loss, which may occur over an engaging children in an activity toddlers play this game repeatedly as extended period of time. For young while talking with them, may be they try to understand and deal with children, such questions may reflect helpful in some situations in which the potentiality of loss. It has been attempts to develop a more complete children appear reluctant to address suggested that peek-a-boo is one of understanding over time as cognitive the topic in direct conversation. many games that children play that development progresses. Pediatricians can also provide might allude to loss or death. In fact, written information to families about Misinformation or misconceptions “peek-a-boo” is translated literally how to support grieving children can impair children’s adjustment from Old English as “alive-or-dead.” (eg, After a Loved One Dies: How to loss. Literal misinterpretations Parents who worry that it is too Children Grieve and How Parents are common among young children. early to raise the topic of death with and Other Adults Can Support Them, For example, children may become their preschool- or even school-aged which is freely available and can resistant to attending a wake after children likely do not realize that be accessed through the coping being told that their parent’s body they began communicating with their and adjustment Web page of the will be placed in the casket; adults children about loss at an early age. American Academy of Pediatrics often assume this is because of a fear at https:// www. aap. org/ en- us/ Research has shown that there are of dead bodies. But some children, advocacy- and- policy/ aap- health- 4 concepts that children come to when told that the “body” is placed initiatives/ Children- and- Disasters/ understand that help them make in 1 location, may conclude that Pages/ Promoting- Adjustment- and- sense of, and ultimately cope the head is placed elsewhere; their Helping- Children- Cope. aspx). 14 with, death: irreversibility, finality reluctance to attend the wake may Books written specifically for (nonfunctionality), causality, and be attributable to a fear of viewing younger children that help them universality (inevitability). 14 – 19 their parent decapitated. It is best not develop a better understanding On average, most children will to assume the reasons for children’s of death or that help children and develop an understanding of these worries or hesitation but instead ask adolescents cope and adjust with a concepts, outlined in Table 1, by 5 what they are thinking about. Young

Downloaded from www.aappublications.org/news by guest on October 1, 2021 e4 FROM THE AMERICAN ACADEMY OF PEDIATRICS TABLE 1 Component Death Concepts and Implications of Incomplete Understanding for Adjustment to Loss Irreversibility: death is a permanent phenomenon from which there is no recovery or return • Example of incomplete understanding: the child expects the deceased to return, as if from a trip • Implication of incomplete understanding: failure to comprehend this concept prevents the child from detaching personal ties to the deceased, a necessary fi rst step in successful mourning Finality (nonfunctionality): death is a state in which all life functions cease completely • Example of incomplete understanding: the child worries about a buried relative being cold or in pain; the child wishes to bury food with the deceased • Implication of incomplete understanding: may lead to preoccupation with physical suffering of the deceased and impair readjustment Inevitability (universality): death is a natural phenomenon that no living being can escape indefi nitely • Example of incomplete understanding: the child views signifi cant individuals (ie, self, parents) as immortal • Implication of incomplete understanding: if the child does not view death as inevitable, he/she is likely to view death as punishment (either for actions or thoughts of the deceased or the child), leading to excessive guilt and shame Causality: the child develops a realistic understanding of the causes of death • Example of incomplete understanding: the child who relies on magical thinking is apt to assume responsibility for the death of a loved one by assuming that bad thoughts or unrelated actions were causative • Implication of incomplete understanding: tends to lead to excessive guilt that is diffi cult for the child to resolve Reprinted with permission from Schonfeld D. Crisis intervention for bereavement support: a model of intervention in the children's school. Clin Pediatr (Phila). 1989;28(1):29. children also may have difficulty home”) and misbehave whenever and discussion in addition to understanding why families would brought to religious services. emotional support. Although they choose to cremate a loved one after often turn to peers for support and Children with intellectual death. Providing developmentally assistance in many situations, after disabilities will generally benefit appropriate explanations for parents the death of a close family member from explanations geared toward and other caregivers to use to or friend, they can benefit from the their level of cognitive functioning, address common questions can be additional physical and emotional followed by questions to assess the presence of adults. Unfortunately, helpful and reassuring (eg, explaining degree of comprehension and to many adolescents receive limited to preschool-aged children that once probe for any misunderstandings. explanation or support after a people die, their body stops working Children with neurodevelopmental death. Often, surviving caregivers permanently and they no longer disorders, such as autism spectrum rely on them to take on more adult are able to move, think, or feel pain, disorder, may benefit from practical responsibilities, such as contributing which is why it is okay to cremate the suggestions about communicating to the care of younger siblings and body, or use high temperatures to their feelings and needs, as well performing more chores within the turn the body into ashes). as additional support to promote home, and may count on them to coping. Children unable to serve the role of a confidante and To minimize misinterpretations, communicate verbally may show source of emotional support for the it is best to avoid euphemisms; their grief through nonspecific caregivers themselves. Pediatricians especially with younger children, it signs or behaviors, such as weight may be able to assist in such cases is important to use the word “dead” loss or head banging. To provide by encouraging adult caregivers to support after a death, parents and or “died.” For example, a young identify their own support, such as other caregivers can draw on the child told that a family member is through faith-based organizations, strategies and approaches that have in eternal sleep may become afraid community-based support groups, or worked with their children in the of going to sleep himself. Religious professional counseling. explanations can be shared with past to provide comfort when faced with other stressors and to explain children of any age according to Juniors or seniors in high school challenging concepts. the wishes of their caregivers. But are at a point in their development because religious concepts tend when they may be particularly to be abstract and therefore more vulnerable to difficulties in coping ADOLESCENTS likely to be misunderstood by young with the death of a close family children, it is important to also share Adolescents may have a mature member or friend. This is a time of with children factual information conceptual understanding of death, heightened academic demands, and based on the physical reality. For but they still experience challenges the common short-term negative example, a young child told only that adjusting to the death of a close effect on academic productivity may a brother died “because he was such family member or friend. 21 Although be compounded by the high level a good baby God wanted him back at they are capable of rational thinking, of academic scrutiny characteristic his side” may begin to fear attending adolescents, like adults, nonetheless of applying to college. Completing church (if this is viewed as “God’s benefit from additional explanation high school and leaving family to

Downloaded from www.aappublications.org/news by guest on October 1, 2021 PEDIATRICS Volume 138 , number 3 , September 2016 e5 pursue their own education or a friend’s party rather than staying logical reason for it. Pediatricians career is a challenging transition for home to monitor his father, he can can explain that they know there is adolescents and often involves stress reassure himself that his mother nothing that the child did, failed to and ambivalence. A recent death can will be okay as long as he never do, or could have done to change the exacerbate academic and personal leaves the home at night again. The outcome but wonder if the child ever challenges. Youth anticipating leaving alternative to this kind of thinking believes that he or she somehow home for school or career may feel is accepting that we have limited contributed to the death as many guilty about leaving other family influence over tragic events, but that children do in similar situations. members who are grieving or worry reality leaves many feeling helpless. They can explain that feeling bad that they will have difficulty coping It is frightening to realize someone does not mean you did anything bad when separated from their family, else we care about could die at any and feeling guilty does not mean friends, and familiar supports. These time, no matter what we do. But you are guilty. When pediatricians young people may arrive in college assuming fault for a death in this help children express their guilt to face peers who are unaware of manner does not prevent future loss, associated with a death, it allows their loss, unfamiliar with how best and the resulting guilt contributes children to begin to challenge their to provide them with support, and to further distress. In situations faulty assumptions about personal focused on pursuits and activities in which children’s actions clearly responsibility and promotes a that seem incongruous with their contributed to the cause of death (eg, refocusing on the child’s feelings grief. The food, people, and settings a child who accidentally discharges about the loss. that normally provide them solace a firearm that results in the death of Children also may experience and comfort may be lacking at a someone) or when children persist guilt over surviving after a sibling time when they are most needed. in feeling responsible (whether such died or feeling relief after a death Pediatricians can support these guilt is logical), pediatricians should that followed a lengthy illness. In adolescents by staying connected consider referral for counseling. the setting of a protracted illness, with them during the transition In the context of ongoing support, family members and friends often and helping them and their families children can be helped to either experience anticipatory grieving. identify supports and resources dismiss illogical guilt or come to They can imagine the death and at college and in their family’s forgive themselves for unintended experience graduated feelings of loss, community. 13 actions they believe have contributed but when it becomes overwhelming in some way to the death. they can reassure themselves Children are also more likely to that their loved one is still alive. GUILT AND SHAME feel guilty about a death when Anticipating the death allows them the preexisting relationship with to accomplish some of the “work” of Because of the egocentrism the deceased was ambivalent grief before the death actually occurs. and magical thinking that are or conflicted. The relationship But this is a painful process, and at characteristic of young children’s between adolescents and their some point, many individuals in this understanding of causality, children parents often has some element of situation will wish for the death to will often assume that there was such ambivalence or conflict as the occur. Although they may couch this something they did, did not do, or adolescent strives for independence, in terms of hoping for the person should have done that would have and conflict is more likely to be who is dying to be able to end his or prevented the death of someone present if the deceased had a chronic her suffering, the death would also close to them and develop guilt mental or physical illness or problem end some of their own emotional over a death. Even older children, with substance abuse or had been suffering as they anticipate the death and indeed adults, often feel guilty abusive, neglectful, or absent (eg, of a loved one and free them of their when there is no logical, objective incarcerated or deployed). Guilt of responsibility to focus much of their reason for them to feel responsible other family members may also lead time and efforts on the needs of for a death. People may assume to difficulties: for example, it can the person who is critically ill. This some responsibility because it helps distort the relationships between situation can result in further guilt them believe that, by taking actions parents and surviving children after and complicate the grieving process. 8 they failed to take before, they can the death of a sibling. 22 prevent the future deaths of others When children assume that the about whom they care deeply and It is helpful for pediatricians to cause of the death was the result of feel more in control. For example, if approach children who have lost a the actions, inactions, or thoughts a child assumes that the reason his loved one to presume that guilt may of the person who died, they may father died was because he attended be present, even when there is no feel ashamed of the person who

Downloaded from www.aappublications.org/news by guest on October 1, 2021 e6 FROM THE AMERICAN ACADEMY OF PEDIATRICS died and/or the death and reluctant can be used by schools to respond • relocation resulting in a change in to talk with others about their loss. to a death by suicide of a student or school and peer group; Shame is also likely to complicate member of the school staff (freely • less interaction with friends or bereavement when the death is available at www. schoolcrisiscente r. relatives of the person who died somehow stigmatized, such as org). (eg, friends of a child’s sister no death from suicide or resulting from longer visit after the sister dies); criminal activity or substance abuse. This shame further isolates grieving SECONDARY AND CUMULATIVE LOSSES • loss of shared memories; children from the support and Although children generally show a • decreased special attention (eg, assistance of concerned peers and remarkable resiliency and ability to a child may no longer value adults. adjust to the death of someone close participating in sports activities to them, nonetheless, they do not “get without his parent there to cheer Suicide is often complicated by both over” a death in 6 months or a year. for him); guilt and shame among survivors. Rather, they spend the rest of their As a result, discussion about the life accommodating the absence. • decreased availability of the cause of death is often limited, and In fact, many find the second year surviving parent (who may need to children may struggle to understand more difficult than the first. The first work more hours or who becomes the cause or circumstances of the year after the death is filled with less available emotionally because death. Open communication helps many anticipated challenges: the of depression); and prevent suicide from becoming a first holiday or birthday without a • “family secret,” which may further loved one or the first father-daughter a decreased sense of safety and disrupt the grieving process. If the dance after the father’s death. trust in the world. explanations are too simplistic, Expectations typically are reduced Relationships that seemed incidental concerns may be increased. For (ie, the child expects to feel sad at may take on new meaning after example, if children are told only, the first special holiday without a they are no longer available. For “Your uncle killed himself because he loved one), and multiple supports example, after the death of his sister, was very, very sad,” they will likely are usually in place. But when these a younger brother may now miss notice that extended family members special occasions are still not joyful the advice and guidance provided by and friends, who are overwhelmed in the second year, children may his sister’s boyfriend, who no longer with grief, may look “very, very sad” wonder if they will ever be able to visits. Other losses may not become and worry that they, too, will kill experience joy again. Unfortunately, apparent until years later. A 5-year- themselves. A preferable explanation by this point in time, the support they old girl experiencing the death of her might aim to convey that suicide may have received from extended grandmother who was her primary is usually the result of underlying family, teachers, coaches, and others caregiver may not realize until many depression or other mental health at school and in the community has years later that she has lost her problems; it may also be related to probably already ended. However, grandmother’s advice and support alcohol or other substance abuse. It is the sense of loss is persistent, and as she faces puberty or her first date, important to emphasize that suicide without proper support it may or on the first night her newborn is not generally a logical “choice” be perceived as overwhelming. infant cries inconsolably. At each new made by someone who is thinking Maintaining support for children and milestone, the loss of someone for clearly and able to consider a range families is important well beyond the whom we care deeply is redefined of solutions to problems. In addition, initial period of grief. and grief is revisited. children should be encouraged When children experience a death to communicate when they are When children experience a death of someone close to them, they lose distressed or feeling depressed, at a young age, they may also not only the person who died (ie, the informed about where they can go for not fully understand the death primary loss) but also everything advice and assistance, and instructed or its implications. Each new that person had contributed or not to keep in confidence when peers developmental stage, as cognitive would have contributed to their or others communicate to them that development advances and life (ie, secondary losses). Common they are considering self-harm. 23 experience widens, may prompt secondary losses include the Sample scripts and language for a resurfacing of their grief and be following: discussing suicide with children accompanied by questions that at different developmental levels, • change in lifestyle (eg, altered permit the child to come to a more prepared by the National Center financial status of the family after mature understanding of the death for School Crisis and Bereavement, the death of a parent); and its implications.

Downloaded from www.aappublications.org/news by guest on October 1, 2021 PEDIATRICS Volume 138 , number 3 , September 2016 e7 Subsequent losses and stressors also and that we provide them with the individuals who are grieving may add to the challenge of adaptation. support and assistance they need to not anticipate the challenges posed Children who have experienced cope with loss and crisis. by anniversaries or events or may traumatic events or significant losses feel uncomfortable imposing on in the context of sufficient support the physician for advice for what and internal capacity to cope may GRIEF TRIGGERS AND ANNIVERSARY they believe to be a normative and experience posttraumatic growth REACTIONS universal experience. Pediatricians and emerge with increased resiliency can, instead, schedule follow-up Grief triggers evoke sudden and new skills to cope with future appointments to coincide with such reminders of the person who died adversity. These children may shift timed events (eg, just before the start that can cause powerful emotional their life goals to align more with of a new school year; just before the responses in children who are public service; place a higher priority first-year anniversary of the death), grieving. Although they are most on family, friends, spirituality, and when modest changes in the timing common in the first few months helping others; or become more make it practical, or can call, write, or after the death, they may happen empathic. 11, 24 But in communities e-mail a patient/family periodically months or years later, although the that are characterized by high to check in and let the child and strength of the emotions generally rates of violence, poverty, and family know of their continued lessens with time. Some triggers, frequent deaths of peers and young availability and interest. Pediatricians such as a Mother’s Day activity in family members, such supports interested in providing significant class or a father-daughter dance at are generally not present or are direct bereavement support for school, are easier to identify, but insufficient to meet the heightened children and families within their grief triggers can be ubiquitous and need. Children in such environments practice can explore coding by time often difficult to anticipate. A child do not somehow “get used to death” for counseling and coordination of may pass by a stranger wearing the or become desensitized. Rather, these care to maximize reimbursement for same perfume as her aunt or hear losses make them progressively more these services. When the pediatrician a song that her grandfather used to vulnerable to future stresses and lets the family know he or she is still sing and be reminded of the loss. loss. Children in these circumstances concerned and available, it increases Parents can work with teachers often come to appreciate that adults the chances that the child or family to both minimize likely triggers in in their communities are unable will seek advice and assistance when school settings and create a “safety” to provide for their safety and are needed. plan wherein students know they unwilling or unable to provide can leave the classroom if necessary. support and learn not to seek If children know that they can leave assistance from these adults because if they need to, they are less likely FUNERAL ATTENDANCE they know it is unlikely to be offered. to feel overwhelmed or afraid they One reason children and adolescents Children, like adults, often benefit will cry in class. As a result, they will in these environments may instead from participating in funerals, rarely need to exit and are more able turn to peers (and gangs) is to wakes, and other memorial or to remain within the classroom and seek such support, which may commemorative activities after the engaged in the classwork. 13 contribute to high-risk behaviors death of a close family member or that jeopardize their safety. They Anniversaries of the death, birthdays friend. It provides them with an may engage in risky behaviors out of the deceased, holidays, special opportunity to grieve in the presence of fear for their own mortality and events, and major transitions (eg, of family and friends while receiving the need to challenge these fears changing schools, graduating high their support and, as appropriate to by engaging in the same behaviors school, moving homes) are also the family, solace from their spiritual they know to be dangerous. Only by times when a loved one’s absence beliefs. Parents and other caregivers surviving these risks can children will be acutely felt. Pediatricians sometimes exclude children from and adolescents reassure themselves can help the family find ways to funerals and wakes for fear that that they are safe, at least for the meaningfully honor these events. the experience may be upsetting moment. In this context, it becomes The medical home is uniquely well or because they, themselves, are critical that adults in our society suited to provide ongoing periodic grieving and unsure whether they take responsibility for ensuring bereavement support. Pediatricians can provide appropriate support. that the environment is safe for should invite children and their Children who are excluded from children and adolescents, especially families to reach out for assistance memorial or funeral services often in communities characterized by and advice as children adjust to resent not being able to participate violence, poverty, and frequent loss, the loss over time. However, many in a meaningful activity involving

Downloaded from www.aappublications.org/news by guest on October 1, 2021 e8 FROM THE AMERICAN ACADEMY OF PEDIATRICS someone they care deeply about and picture of the parent to be displayed backgrounds and/or have been may wonder what is so terrible that at the wake. exposed to different cultures through their communities or schools. Parents is being done to the loved one that it It can be helpful to assign an adult sometimes have different beliefs is not suitable for them to view. What whom the child knows well but or practices from their children. they imagine is likely to be far worse who is not personally grieving (eg, Families or individuals may choose to than the reality. a teacher, babysitter, or relative follow practices of a different culture who is close to the child but less if they seem to align better with their It is best to invite children to familiar with the deceased) to current preferences. Assumptions participate in wakes, funerals, or accompany and monitor the child about how someone ought to memorial services, to the extent throughout the services. If the child mourn in a particular culture may they wish. Begin by providing basic is fidgeting or appears distressed, result in a stereotype that could information in simple terms about the adult can suggest they go for cloud our perceptions and make us what children can expect from the a walk and inquire about how the miss opportunities to be helpful. experience. For example, include child is coping with the experience. Pediatricians should therefore ask information about whether there will If the child prefers to stand outside families what they feel would be be an open casket and anticipated of the room and hand out prayer most helpful for their family or for cultural and religious rituals (eg, cards, that level of participation individuals within the family. guests may be invited to place some can be accommodated without dirt on the coffin at the gravesite), as disrupting the experience for The best approach is to be present, well as how people may be expected other grieving family members authentic, and honest. Approach to behave (eg, some people may be (ie, the child would be less able to children and their families with an crying and very upset; humorous stay outside of the room if being open mind and heart and be guided stories and memories may be watched by the mother who feels it by what you see, hear, and feel. The shared). Ask children what additional important to stand by her husband’s following are questions that may information they would like and what coffin throughout the wake). Older assist in this process: questions they might have. Children children and adolescents may • “Can you tell me how your family should not be forced or coerced wish to invite a close friend to sit and your culture recognize and to participate in particular rituals with them during the service or cope with the death of a family or to attend the funeral or wake. If assist with greeting guests as they member?” older children who had a very close approach the room. Suggestions on • “How does this fit with your own relationship with the deceased (eg, how to address the needs of children preferences at this time?” teenagers whose parent has died) related to commemoration and indicate they do not want to attend memorialization involving a crisis, • “Can you help me understand how the funeral, it is helpful to explore especially in a school setting, can be I can best be of help to you and 11,13 the reason for their not wishing to found elsewhere. your family?” attend and ask them to describe what accommodations might be made in CULTURAL SENSITIVITY WORKING WITH SCHOOLS the plans to meet their needs (eg, they prefer not to attend the wake Different cultures have a range of Children typically experience at least but will attend the funeral service). traditional practices and rituals as temporary academic challenges after But, as with all true invitations, the well as expectations around how the death of a close friend or family decision is ultimately left to the child. members of their culture typically member. The effect the loss has on Families can work with children mourn the death of a family member learning may first appear weeks or to identify alternate ways for them or close friend. Although it is helpful even months later. Some children to recognize the death, such as a for pediatricians to know something may even respond to a death by private visit to the funeral home about these cultural differences, it overachieving in school. Children once the casket has been closed or a is important to remember that the with learning problems that predated visit to the gravesite after the burial. fundamental experience of grief is the loss may experience a marked All children can be invited to make universal. worsening. meaningful but developmentally Knowledge of the common practices In general, it is best for the family to appropriate decisions about the of a particular culture may not anticipate at least brief difficulties service of an immediate family accurately predict how a family or in learning and concentration and member; they may be permitted to individual from that culture will to establish a proactive relationship select a flower arrangement or a behave. Many families have mixed with the school to coordinate

Downloaded from www.aappublications.org/news by guest on October 1, 2021 PEDIATRICS Volume 138 , number 3 , September 2016 e9 supports at school with those The Coalition to Support Grieving • bereavement support groups and within the home. If schools wait for Students was formed to develop a camps (a listing of national and academic failure to become apparent, set of resources broadly approved regional services and resources for then school becomes a source of by 10 of the leading professional grieving children can be found at additional distress rather than a organizations of school professionals http:// www. newyorklife. com/ nyl/ potential support. Instead, academic to guide educators and other v/ index. jsp? contentId= 143564& expectations should be modified as school personnel in supporting and vgnextoid= 755540bf8c442310V needed and supports put into place in caring for their grieving students. gnVCM100000ac841c acRCRD); anticipation of a possible need. The resources are available at • school-based programs and no charge to the public at www. Caregivers and educators can work services; grievingstudents. org. The video- together to identify the level of training modules feature expert • counselors who are interested and academic work that feels appropriate commentary, school professionals qualified in counseling children and achievable at a particular point who share their observations and who are grieving; and of time in the recovery process after advice, and bereaved children and a major loss. Some modifications • other mental health professionals family members who offer their that may be considered include the trained to counsel grieving own perspective on living with loss. following: children who are also experiencing Handouts and reference materials depression, anxiety, or trauma • adapting assignments (eg, oriented for classroom educators, symptoms. allow a student to prepare a principals/administrators, and written presentation if he feels student support personnel that As noted previously, adults in uncomfortable with an oral summarize the training videos, the family may benefit from their presentation; substitute smaller as well as a range of additional own support so that they do not projects for a large project that resources, can be downloaded from depend unduly on their children for may feel overwhelming in scope); the Web site. Although developed emotional support and so they are better able to discern and address the • for use by educators, the materials changing the focus or timing of needs of their grieving children. a lesson (eg, excuse the student are applicable for the professional from a lesson on substance abuse development of pediatric health care Grief from the death of a close if her sister recently died of a drug providers as well. Many are also family member or friend can overdose or consider postponing it appropriate for other sites where dominate children’s lives in the to later in the semester); child congregate care is provided, immediate aftermath of the loss, including early learning centers, causing disinterest in engaging • reducing and coordinating preschools, and in-home day care in previously enjoyed activities, homework and extracurricular settings. Those caring for children compromising peer relationships, activities so that the student is able younger than school age similarly interfering with the ability to to meet expectations for what is benefit from the support and training concentrate and learn, causing being required; or that can be provided by pediatricians. regressive or risk-taking behavior, • modifying or excusing the student or creating a challenge to healthy from tests or placing more weight social and emotional development. COMPLICATED MOURNING AND on grades achieved before the But with time and adequate support, INDICATIONS FOR REFERRAL death. grieving children learn that their In the immediate aftermath of a lives in the absence of the deceased, The goal is to maintain reasonable death, the reactions of children although permanently altered, expectations while providing the and adults can be quite extreme nonetheless can be meaningful support and accommodations so and varied. It is best to avoid the and increasingly characterized by that the student can achieve at that tendency to judge or try to categorize moments of satisfaction and joy. level and be prepared for successful such acute reactions as either Children who instead experience advancement to the next grade “normal” or “abnormal.” If children complicated mourning may fail to level. 13 or adults appear to be at risk of show such adjustment over time. 28 Pediatricians can help provide harming themselves or others, action They may experience difficulty training to schools about how best should be immediately taken to with daily functioning at school to support grieving students and preserve safety. Pediatricians should or at home that persists months provide consultation after a death be aware of community resources after the death. They may become has occurred involving a member for bereavement support. These preoccupied with thoughts about the of the school community. 11, 13, 25 –27 resources may include the following: deceased or develop nonadaptive

Downloaded from www.aappublications.org/news by guest on October 1, 2021 e10 FROM THE AMERICAN ACADEMY OF PEDIATRICS behaviors, such as tobacco, alcohol, continuing medical education venues, be able to take away the pain and or other substance use; promiscuous and via retreats and psychosocial sorrow (and should not see that as sexual behavior; or delinquent or rounds in hospital settings. their goal), but they can significantly other risky behaviors. Referral for Children’s grief may also trigger reduce the suffering and minimize counseling is particularly important reminders of loss and other reactions the negative effects of loss on in this context. More immediate or in pediatricians. It may remind adults children’s lives and developmental urgent referral is indicated if children of their own losses or raise thoughts courses. show deep or sustained sadness or or concerns about the well-being depression, especially if they are of those they love. Children’s grief LEAD AUTHORS perceived to be at risk of suicidal is often unfiltered and pure; their David J. Schonfeld, MD, FAAP behavior. questions are direct and poignant. It Thomas Demaria, PhD is difficult to witness a child’s grief CONTRIBUTING AUTHOR and not feel an effect personally. In PROFESSIONAL PREPARATION AND Sharon Berry, PhD, LP, ABPP SELF-CARE fact, not being affected should not even be an expectation or a goal. COMMITTEE ON PSYCHOSOCIAL ASPECTS Pediatricians often enter the Nonetheless, pediatricians should OF CHILD AND FAMILY HEALTH, 2015–2016 profession because of a desire to monitor their reactions and feelings help children grow, develop, and be Michael Yogman, MD, FAAP, Chairperson and limit their support to what they Nerissa S. Bauer, MD, MPH, FAAP healthy and happy. Understandably, feel ready and able to provide to Thresia Gambon, MD, FAAP pediatricians can find it difficult any particular family at that point Arthur Lavin, MD, FAAP to witness children’s distress as in time. If the family is in need of Keith Lemmon, MD, FAAP they grieve the death of someone additional supportive services, the Gerri Mattson, MD, FAAP Jason Rafferty, MD, MPH, EdM about whom they care deeply. Many pediatrician can seek the assistance Lawrence Wissow, MD, MPH, FAAP pediatricians have received limited of a professional colleague in the training about how to support office or through referral to someone LIAISONS grieving children. It is difficult to in the community. Sharon Berry, PhD, LP, ABPP – Society of Pediatric believe you are helping people when Psychology they remain in such distress. You It is important for pediatricians to examine and understand their Terry Carmichael, MSW – National Association of want to help people feel “better,” Social Workers but when they freely express their personal feelings about death to Edward R. Christopherson, PhD, FAAP (hon) – sorrow in the immediate aftermath be effective in providing support Society of Pediatric Psychology of a death, it is difficult to know that to children who have experienced Norah Johnson, PhD, RN, CPNP – National Association of Pediatric Nurse Practitioners you are helping them ultimately a personal loss or who are faced with their own impending death. L. Read Sulik, MD – American Academy of Child adjust and cope. Following up with and Adolescent Psychiatry children and their families over time Often, this understanding will and actively inquiring about how involve an awareness of the CONSULTANT effects of deaths of patients on they are continuing to adjust will George Cohen, MD, FAAP help the pediatrician support and pediatricians’ professional and observe the course of recovery and personal lives. The culture in STAFF understand his or her role in that medicine needs to acknowledge that Stephanie Domain, MS process. Professional preparation it is understandable to feel upset DISASTER PREPAREDNESS ADVISORY and education are helpful; resources when bearing witness to something COUNCIL are available on various professional that is upsetting. As professionals, Web sites (eg, the American pediatricians should offer support Steven E. Krug, MD, FAAP, Chairperson Sarita Chung, MD, FAAP, Member Academy of Pediatrics at www. to our colleagues and seek out and accept support for ourselves. Daniel B. Fagbuyi, MD, FAAP, Member aap. org/ disasters/ adjustment; Margaret C. Fisher, MD, FAAP, Member the Coalition to Support Grieving Pediatricians who do provide support Scott M. Needle, MD, FAAP, Member Students at www. grievingstudents. to grieving children and families David J. Schonfeld, MD, FAAP, Member org; or the National Center for School often have a meaningful and lasting Crisis and Bereavement at www. impact. A relatively modest effort to LIAISONS schoolcrisiscente r. org). Pediatricians provide compassion and support can John James Alexander, MD, FAAP – US Food and can also seek out and request have a dramatic effect. It can help Drug Administration Daniel Dodgen, PhD – Offi ce of the Assistant professional development training reduce the amount of time grieving Secretary for Preparedness and Response through professional meetings, children feel confused, isolated, and Eric J. Dziuban, MD, DTM, CPH, FAAP – Centers for through grand rounds, from other overwhelmed. Pediatricians will not Disease Control and Prevention

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Children’s Sons Ltd; 2012:223–230 Administration understanding of death: a review of David Alan Siegel, MD, FAAP – National Institute of 9. Leash R. Death Notifi cation: A Practical three components of a death concept. Child Health and Human Development Guide to the Process. Hinesburg, VT: Child Dev. 1984;55(5):1671–1686 Upper Access; 1994 STAFF 20. Schonfeld DJ, Kappelman M. The 10. Foltin GL, Schonfeld DJ, Shannon impact of school-based education Laura Aird, MS MW, eds. Pediatric Terrorism and on the young child’s understanding Sean Diederich Disaster Preparedness: A Resource for of death. J Dev Behav Pediatr. Tamar Magarik Haro Pediatricians. Rockville, MD: Agency for 1990;11(5):247–252 Healthcare Research and Quality; 2006. AHRQ publication 06-0056-EF 21. Stikkelbroek Y, Bodden DH, Reitz E, REFERENCES 11. Schonfeld D, Demaria T; Disaster Vollebergh WA, van Baar AL. Mental 1. Ewalt P, Perkins L. 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Downloaded from www.aappublications.org/news by guest on October 1, 2021 Supporting the Grieving Child and Family David J. Schonfeld, Thomas Demaria and COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY HEALTH, DISASTER PREPAREDNESS ADVISORY COUNCIL Pediatrics originally published online August 29, 2016;

The online version of this article, along with updated information and services, is located on the World Wide Web at: http://pediatrics.aappublications.org/content/early/2016/08/25/peds.2016-2147

Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. Pediatrics is owned, published, and trademarked by the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2016 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397.

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