15 Anticipatory Grief and Bereavement

Jennifer M. Snaman, Terrah Foster Akard, Sue E. Morris, and Lori Wiener

Anticipatory grief and bereavement—the before, during, and after of a death—comprise many different physical, psychological, spiritual, social, and cultural facets. The grief following the death of a child is never-ending and ebbs and flows over the lifetime of those who experience the loss.^1,2,3,4 At the core of pediatric grief and bereavement is the child, surrounded by concentric circles of family, friends, members of the interdisciplinary care team, and the wider community (Figure 15.1).

Over the past two decades of research, the perspectives of bereaved parents have proved to be invaluable in the development and expansion of the field of pediatric palliative care (PPC).^5,6,7,8 This burgeoning research area has explored the care provided to the child and family throughout the illness trajectory, at the end of life, and into bereavement, rather than exclusively focusing on the death itself.^{9,10,11,12,13,14,15,16} Approaching bereaved families (including parents and siblings) for research purposes had previously been questioned given concerns about inflicting psychological harm or distress in this vulnerable population.¹⁷ Yet multiple studies have shown that parents find participation to be a positive and therapeutic experience—often even more so than nonbereaved parents.^18,19

This chapter addresses the interplay between the universality of the grief experience and the uniqueness of the individual’s and family’s response. The phenomenon of anticipatory grief is described, followed by a discussion of bereavement. Emphasis is on the role of ongoing assessment in bereaved families and the implications for intervention, including cultural and spiritual dimensions of care and support. The roles that various interdisciplinary members of the primary and specialty palliative care teams play in supporting families throughout the illness and following the child’s death are outlined in Table 15.1.

Quotations from bereaved families are woven throughout the chapter to highlight important themes. The grief of clinicians is also addressed, including interventions designed to support interdisciplinary team members who care for children with serious illnesses and their families.

The Child, Family, and Community

The Family Unit

The definition of “family” has expanded over time to encompass many diverse constellations. From the outset, a family’s own definition of their family unit and the role of each member within that unit should be elicited. Without such information, clinicians’ assumptions of inclusion or exclusion may be faulty. This may result in overlooking members who are themselves valuable sources of support or those who are in need of additional support. The nuclear family of child, siblings, and parents is usually at the core, surrounded by the extended family. For families of children with serious illness, grandparents may play a major role and serve as informal caregivers to the ill child as well as siblings.^20,21 Close friends may be indistinguishable from family, especially during acute clinical changes and as the child or adolescent nears the end of life. With the changing structure of the family, teams must be open and accepting of nontraditional, alternative, and complicated arrangements. These may include divorced and reconstituted (blended) families, with their inherently conflicted histories and new alliances; single or lone-parent families; children of lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) parents; and children raised by grandparents. The composition of the family likely frames other factors, including developmental level, psychological history (including coping with past losses and trauma), sources of support, and cultural and spiritual beliefs.

A universal phenomenon in the bereavement process is that individuals in the same family grieve in different ways and on different schedules.^1,2,22,23 Despite mourning the same child, family members are often out of sync with one another in their experience and expressions of grief. Misunderstanding, guilt, anger, resentment, and a profound loneliness often arise when this phenomenon is not understood.^1,2 Additionally, the death of a child can send parents reeling into uncertainty about their identity.²⁴ This may be especially true for parents who have lost an only child or for those who have lost more than one child: Are they still parents? Are they still a family?

As for siblings of children who die, their modes of expressing grief may differ substantially from that of their parents or other adults. Thus, their grief’s meaning and depth may be underestimated or even missed completely.²⁵ All too often, siblings become disenfranchised grievers,²⁵ whereby their loss is minimized compared to that of their parents’. Bereaved siblings have also been described as “forgotten mourners” as they adjust to the loss of the sibling relationship and the resultant change in family dynamics and roles.²⁶

Culture and Background, Community, and Peers

There is a growing diversity of familial, cultural, and community influences throughout the world. It is crucial to recognize the impact of background, culture, and language on the family’s experience of the child’s illness and treatment, how they make decisions along the illness trajectory and at the end of life, and on the grief process.²⁷ Cultural perceptions may challenge the use of language. For instance, in English, the word “compassion” connotes a deep caring. In some Spanish traditions, however, the word is primarily connoted with care for the dying. Thus, the use of this term in the wrong context may communicate an unintended message to the family.

Many issues at the end of life and after a child’s death vary by culture, including the meaning of pain and suffering, illness, and death; the role of religion and spirituality; the role of family; and practices or preferences. There may be cultural differences in the expectations of the medical team, the expected role of family members and the community, and beliefs about the inclusion of children in discussions. Information regarding customs and rituals for specific cultures or ethnic groups is available and can provide a broad framework for beginning to explore a family’s beliefs. However, team members must be aware that significant differences can exist in these practices within the same ethnic groups (or even within the same family). Therefore, rather than make assumptions about preferences based on their race, religion, or culture, clinicians should incorporate a deep sense of humility and curiosity in developing a partnership with families.²⁸ Awareness of these nuances and differences may also enable bereavement care to be better individualized.²⁹

Anticipatory Grief

It might sound a little bit strange, but I guess I would have to say that the grieving process started with the diagnosis.

Anticipatory grief is a universal process among families of children with serious illness.^30,31 It begins at time of diagnosis, wends its way along the illness trajectory, and—for children with incurable disease—continues until the moment of death. Anticipatory grief often resembles the grief that immediately follows a death: emotions are alternately raw and numb and very much evident.³² The classic definition of anticipatory grief is “grief expressed in advance when the loss is perceived as inevitable.”³³ Experientially, the process reflects the emotional response to the pain of separation before the actuality of loss.³² The ill child may grieve multiple losses: the loss of his or her healthy self, of function and role, of separation from loved ones. Parents and other family members also experience anticipatory grief, grieving the loss of “normalcy,” of a healthy child and a typical future for that child. Throughout the illness course, parents move from the conceptualization that “our child may not survive” to “our child is going to die” to an even more anguished dawning that “we are going to lose our child.” It is at this juncture that the recognition of an inevitable separation has begun.³² The ebb and flow of anticipatory grief is unique for each person and family, depending on the nature and length of the illness trajectory, as well as psychological and cultural factors.³⁴

The child and family may feel overwhelmed by their intense emotions, not understanding the source. Often, they do not recognize that below the sadness lies the deeper and more complex phenomenon of anticipatory grief. Articulating this distinction and explicitly naming this phenomenon can be a powerful therapeutic intervention for both children and parents. It is important to explain that grief arises not only around the finality of death, but also for the cumulative losses that occur over the course of an illness.

A mother berated herself: “I can’t understand why I cry all the time. My daughter is doing reasonably well right now. It makes me feel guilty when I cry like this—I feel as if I am burying her before she actually dies.” Once the psychologist explained the concept of anticipatory grief, she experienced enormous relief at being able to attribute a meaning to her tears.

The grief of seriously ill children has its own immediacy.^35,36,37 Being in the hospital for extended periods of time separates them from their family and friends—at home, school, and in other activities, in the neighborhood and their faith community. They often express longing for these relationships, so disrupted by the illness. Children facing death may become fearful and express anxiety about being separated from their families. It is crucial that parents reassure children that they will always be loved and will never be forgotten. Children may feel isolated or fearful if they are not given permission to talk openly about their illness and impending death.³⁸ For parents who feel that such conversations could be in the best interest of their child and family, age- and developmentally appropriate tools to facilitate these discussions may be provided. However, parents should not be pressured or forced to initiate them.

Siblings of children with serious illness also experience anticipatory grief, which may be manifested in behavioral changes, school difficulties, or symptoms of acute and posttraumatic stress.³⁹ Awareness of these needs and provision of support to siblings during treatment and into bereavement is essential.⁴⁰ Child life specialists and mental health professionals can engage these children in discussions around their experience of the sibling’s illness and assist parents in talking with them to ensure that their unique needs are being met.

Grief following the death of a fellow patient can be intense, especially when the children have similar diseases or clinical courses. On one level, the child and family grieve the loss of their acquaintance or friend. On a deeper level, they are struck with the awareness that: “This could have been me/our child . . . and will I/our child be next?”³² A recent study indicated that for adolescents and early young adults with cancer, the death of a peer resulted in grief that was slow to ease⁴¹ and was associated with increased risk of adverse psychological outcomes. This close sense of identification provides an opening for the patient and family to address their own sadness and fear. It may also be an ideal time for medical and psychosocial clinicians to help them explore these fears and provide additional support as needed.

The exhaustion that accompanies the long course of a serious illness, with its many ups and downs, is inordinate. The family may find it difficult to know whether to prepare for loss or for life—and how to apportion their emotional energy. Discomfort may occur when a patient’s life extends beyond its prognostic expectancy. The family may at first feel jubilant to have more time with the child, while at the same time they may wonder how they will continue to manage under the ongoing threat of death and permanent loss.

A certain degree of disengagement from the child on the part of family members, or from one another, may be part of the anticipatory grief process. In a self-protective move against loss and further pain, the family may seem “to leave before being left.”³² Such disengagement may be seen in a general emotional withdrawal from the child, or it may take specific forms, including parents beginning to take a less active role in caring for the dying child. These phenomena are neither inevitable nor, when they occur, irreversible. However, they do signify a family’s difficulty in negotiating the anticipatory grief process. It is crucial that the family not feel chastised by the team. Furthermore, a timely referral to a mental health clinician for individual, marital, or family therapy³² may be considered.

Because there are no social rituals to mark anticipatory grief, as there are in bereavement, even close family and friends may be unaware of or confused by what the family is experiencing or how to help. Family members frequently describe a profound sense of loneliness and separateness from others. One of the most therapeutic interventions that clinicians can introduce at this time is to facilitate support among families going through the same experience (Box 15.1).

Right now, we are living in a different world. . . . Our friends in the “outside world” care about us, but they can’t really understand what we are living through. Our closest people right now are the other families at the hospital and our team.

The trajectories of life-threatening illnesses in children are variable and may include cycles of relapse and remission, steady or stepwise deterioration, or acute declines due to illness, injury, or accident. With the approach of the child’s death, everyone confronts the full intensity of anticipatory grief. The child faces the ultimate leave-taking from everyone and everything³²; the family stands at the brink of their new life ahead, facing the specter of life without the child. During this period, there may be the need for planning and critical decision-making interwoven with legacy- or memory-making activities with the child.^42,43

Decisions may include setting of end-of-life care and death (home-based or hospital), specific needs, advance care planning (ACP) and/or advance directives, autopsy, and funeral arrangements. Many families must consider (or reconsider) decisions to continue or discontinue interventions based on the balance between increased time versus increased suffering.

Children with cancer have reported their preference for honesty and parental involvement in communication about their illness.⁴⁴ Almost all children surveyed (aged 8–17) wanted to be told if they were dying.⁴⁵ Involvement in discussions and decisions, if they so choose, can help them to maintain a sense of autonomy.⁴⁶ How and when to include them is often a collaborative decision among the child, family, and primary team, along with guidance from the palliative care team.

Children near the end of life may confide wishes to loved ones and prepare for death.⁴⁷ Younger children may communicate their awareness via their actions and the implications of their words rather than through explicit discussions. Family communication tools (e.g., Hello, Hear My Voice, ShopTalk) and ACP guides that provide age-appropriate methods of voicing preferences (e.g., My Wishes, Voicing My Choices) provide a way for children and adolescents to express their opinions about their care and how they wish to be remembered in the future.^48,49

Many adolescents and young adults have an opinion about what they would want to happen to their body after death (including autopsy, burial, or cremation) and funeral planning. Research has shown that they would like the option of donating their body or tissues for research into their disease,⁴⁸ yet this conversation rarely occurs. Parents who agreed to an autopsy for research purposes found it to be feasible⁵⁰ and satisfying,⁵¹ with no parents regretting the decision.⁵² Interestingly, most parents who had not discussed autopsy would have considered it for the advancement of science and better understanding of their child’s condition.^53,54

Hospitals may offer legacy-building activities (e.g., shared artwork, making a memory box or book, storytelling, videos and portraits, tracing family members’ hands, making prints and molds of the child’s hands and feet) to assist seriously ill children and their families in documenting the child’s legacy. These are provided primarily by child life specialists, social workers, chaplains, and bedside nurses. Although the activities are typically not empirically based, some have demonstrated improved psychosocial outcomes and comfort in bereavement.^{42,43,47,55,56} Legacy research in pediatric oncology has shown that children desire that others remember their personal characteristics, things they like to do, and connectedness with others.⁵⁷ It is important to offer a variety of activities to find those that appeal to ill children and their family members while also respecting a decision for them to decline.⁵⁸ Those who decline can be reassured that children have already created a legacy by simply being who they are.

Parents have specific beliefs about their role in being a “good parent” to their seriously ill child.⁵⁹ Attributes include the recognition of their role in instilling hope within themselves and in their child as they strive to maintain the optimal quality of life possible for the child. As death approaches, families often need assurance that they have done all they could for their child. The team’s availability is crucial and usually appreciated, even by those families who appear to be coping well on their own. Mental health and spiritual care professionals can be of enormous importance for some families during this time.

Another dimension of the anticipatory grief process involves spirituality. The illness experience may challenge the beliefs and search for meaning of many children and parents, at times leading to significant spiritual suffering.⁶⁰ The task of spiritual care in PPC is to offer support to persons of many faiths, cultures, and practices.⁶¹ In most spiritual practices, prayer is a demonstration of faithfulness. In some traditions, the belief is that prayers are answered if they are asked properly and with faith. When prayers go unanswered and children become sicker, the notions of doubt and punishment may loom large.

A 16-year-old boy explained that he no longer prayed because God did not listen to him, but if the chaplain prayed for him, God might hear his prayers.

When the practices that comfort a child differ from what brings solace to the family, the chaplain and palliative care team search for ways to reconcile them.

Tommy, a 15-year-old teenager, was devastated when his disease recurred for the third time. His parents, devout Catholics, invited the priest to visit Tommy to provide support through prayer and sacraments. However, over the previous year, Tommy had been reading about Buddhist beliefs and had participated in a meditation workshop that brought him great comfort. The hospital chaplain arranged for Tommy to speak with a monk about his fears and search for peace as he continued to provide spiritual support for the parents. At Tommy’s request, after his death, his parents invited several monks to chant mantras. Knowing that they had honored their son’s spiritual preferences provided them with a sense of peace.

When families lose access to their primary spiritual and religious community (often because of geographical distance), making new connections is another of many adjustments. Interdisciplinary team members can help to facilitate access to the needed spiritual support.⁶⁰

A Muslim boy had end-stage kidney disease. His mother was a “match” for transplant and said that she would do anything not to lose her son. His father expressed fear of losing both his son and his wife. They requested to talk with an Islamic chaplain. Although the hospital chaplain was not Islamic, the social worker encouraged the family to meet with her nonetheless. They accepted the suggestion and found her to be deeply understanding. The father requested that she pray for the family. The fact that she represented “faith” was enough for the family to accept her.

Parenting is a permanent change in the individual: a person never gets over being a parent. Parental bereavement is also a permanent condition. The bereaved parent, after a time, will cease showing the symptoms of grief, but the parent does not “get over” the death of a child.^{62(p. 178)}

The death of a child is described as one of the worst and most stressful life events.⁶³ The resultant intense and prolonged grief ^2,64,65 may be compounded when parents have witnessed their child’s protracted physical and emotional suffering throughout the course of the illness.^5,10,65,66 Bereaved parents are at increased risk of short- and long-term psychosocial and physical morbidities.^{67,68,69,70,71,72,73,74,75} Likely related to the impact of grief on psychological health, there have also been documented deleterious effects on marriage quality, occupational status, and finances.^72,76 The significant morbidities and intensity and extent of the grief response are thought to be due to the disruption of the natural order of life⁷⁷ (a child dying before the parent), a sense of guilt and/or feelings of failure in protecting their child from harm,^78,79 and the profound disruption of family structure and roles following the child’s death.⁸⁰ Despite experiencing such a shattering event, the vast majority of parents are able to integrate their loss into their life over time. Although their grief is never-ending, it ebbs and flows, changes, and may abate in intensity over time with ongoing support.

Current Research on Parental Grief and Bereavement

Early research in the field of parental grief and bereavement was primarily descriptive or conceptual in nature. These studies provided a rich context within which the characteristics of an individual family may be viewed and have led to an expansion of data in larger populations of bereaved parents. Importantly, previously used frameworks for understanding the concept of grief as a whole may not accurately reflect the grief experience of parents.⁸¹ Popular and commonly understood concepts of the trajectory of “normal” grief, such as the Kubler-Ross model, suggested stages of coping leading to acceptance.^82,83 However, newer models of grief focus on finding meaning in the loss and living with it as opposed to recovering from grief.^15,84,85,86 Additionally, multidomain models of parental grief highlight the importance of ongoing relationships with others and continuing supportive bonds with their deceased child.^72,87,88,89

Much of the bereavement literature has focused on aspects of the child’s diagnosis, treatment, and end-of-life care to ascertain characteristics of the experience that are associated with poor outcomes in parents. Some of these factors may be fixed, whereas others can be modified in the healthcare setting. It is important to note that many of the correlations cited are from small, retrospective qualitative studies or those that include parents many years out from their child’s death; few are prospective quantitative studies examining the parental grief experience over time. Despite these limitations, there is much to learn from the available literature and innovative ways to support parents and families in their grief during treatment, at the end of life, and following the child’s death into bereavement.

Although “long-term” consequences often refer to sequelae 1 or 2 years following a loss, a time frame for parental bereavement has not been established in the literature. Qualitative data indicate that acute grief reactions in the first 2 years may be different from descriptions of parental grief at later points.⁴ Additionally, bereaved parent’s psychological and social needs may change over time. For examples, within cohorts of bereaved parents, parents closer to the death of their child (average of 4–6 years vs. 7–9 years from child’s death) had worse psychological well-being and poorer quality of life.¹⁰

Compared to nonbereaved parents, parents who experienced the death of a child have higher rates of hospitalization for psychological morbidity and physical health issues, including an increased risk for development of cancer, cardiac disease, and diabetes.^8,9,10,11 Additionally, an elevated incidence of both natural and unnatural death has been reported.⁹⁰ Bereaved parents are at increased risk of significant psychosocial morbidities,⁶⁷ including higher rates of psychiatric hospitalization, suicide, and substance misuse.^68,69 Unresolved grief emerges as a specific risk factor for the psychological and physical health of both mothers and fathers in the long term.⁶⁸ Bereaved fathers with unresolved grief are seven times more likely to report sleep disturbances, with ensuing impact on their capacity for work and overall well-being.⁶⁸

Importantly, bereaved parents can experience positive and negative changes in both personal and relational domains.⁹¹ A common and damaging misconception is that the incidence of separation or divorce is elevated in couples whose child has died. Yet a study on long-term marital status shows the opposite: bereaved parents actually are less likely to divorce or separate than are nonbereaved.⁹² Another study indicated bereaved parents were more satisfied with their relationship if they perceive that their partner has a similar level of grief intensity,⁹³ thus highlighting the importance of inclusion of both parents (or other caregivers) in supportive interventions.

Parental Grief: Impact of Parental Demographics and Child’s Diagnosis and Treatment

Parental demographics, a family’s history of previous losses, premorbid conditions, and financial problems likely affect the grief experience and bereavement outcomes. Although most of these factors are fixed, they are important because they have been found to influence parental outcomes. There are documented differences in grief experience by gender, both in coping strategies as well as in psychological and physical outcomes.^72,94 For example, fathers who were able to say farewell to their deceased child in the way they wanted and mothers who were able to talk about their feelings with family and trusted that the care team had made every effort to cure their child reported lower levels of prolonged grief symptoms.¹¹ Differences between genders may also be related to the parental role during the child’s illness; the secondary parent-caregiver may spend less time at the bedside given the need to work and maintain family income and health insurance. In general, fathers’ coping tends to be more work-focused and task-oriented in their grieving.⁷² The differing needs of mothers and fathers have implications for the types of interventions provided during the child’s illness, immediately after the death, and for family bereavement support. However, it is important to note that the literature on parental bereavement may not reflect the actual experience of all parents and may propagate certain stereotypes.

The child’s age at the time of death has been associated with parental outcomes of distress⁹⁵ and prolonged grief.⁹⁶ Aspects of the child’s illness and type of treatment have also been associated with long-term parental outcomes.^3,97 Finally, previous loss experiences have been associated with poorer adjustment in bereavement.³ This may be especially true in parents who have experienced the death of more than one child.

Quality of Care, Communication, and Care at the End-of-Life

Many modifiable factors relating to parental grief are related to the quality of care (perceived and actual) during treatment and at the child’s end of life. Open and honest communication is essential throughout the disease course and the child’s end of life.^14,16,98,99 Moreover, positive parental perception of doctor–patient communication has been directly correlated with perceptions of high-quality physician care at the end of life.^100,101 Parents who reported receiving high-quality prognostic information were less likely to experience decisional regret, and higher parental ratings of communication have been associated with lower levels of long-term parental grief.¹⁰²

Parents desire support and information about how to prepare practically and emotionally for the death of their child. Although most parents want to be fully informed of their child’s status, many clinicians avoid this type of communication. Parents who have been informed that their child’s death is imminent are more likely to be prepared.^103,104 Furthermore, these parents are more likely to talk about death with their child, even more so when they perceive the child also to be aware, an approach that has been shown to reduce the risk of psychological morbidity in bereavement.¹⁰⁵

Location of the child’s death is another factor in bereaved parents’ bereavement: one study indicated that fathers reported high levels of depression, anxiety, and stress when the child died in the hospital rather than at home. The chance of a child dying at home was greater when the parents received information that the child’s illness was incurable and were more cognizant of his or her imminent death.¹⁰⁶ It remains to be determined whether the significant factor is the actual location of the child’s death or the ability of parents (and patients) to discuss and plan the location of death.¹⁰⁷

The severity of symptoms and perceived suffering at the end of life have been associated with higher levels of long-term parental grief.¹⁰² Most parents who reported that their child experienced pain that could not be relieved or a “difficult moment of death” were still affected by this experience many years later.⁹ Knowing the many factors that have been associated with parental outcomes in bereavement, interdisciplinary team members can work together to facilitate high-quality communication, including issues related to dying and death, and address and manage distressing symptoms throughout the illness and at the end of life.

Post-Death Factors Associated with Parental Grief Outcomes

Understanding the parental perception of the child’s death is crucial to understanding the family’s response to the loss. Did they feel their child died peacefully? Was there disappointment in the care their child received at the time of death? Did they feel their child suffered or had poor symptom management? Was the timing of the death unanticipated? Did they perceive a sense of abandonment from their child’s medical team or close friends as death neared or following death?

There are other factors that are associated with parental grief outcomes. Parents who were not able to be physically and/or emotionally present at the time of their child’s death may have long-lasting regrets or feelings of guilt and inadequacy about their caregiving. Parental perception of the oncologist’s care, the child’s quality of life during the last month, preparedness for the child’s death, and economic hardship have been found to predict grief and depression outcomes.¹⁰⁸ Resilience has also been associated with healthier outcomes for bereaved parents, including factors such as perception of self, social resources, and family cohesion.^11,109 Family cohesion remains critically important. In studies conducted over the decades, communication within the family (being able to talk about feelings freely and comfortably) has been associated with more positive grief outcomes.

Many bereaved parents express a strong desire for something positive to come from their child’s death. For example, parents and siblings have reported choosing special activities to honor the deceased child,⁵⁵ such as a ritual or gathering on the child’s birthday or anniversary of the death or walking to raise money for a significant cause. Importantly, many aspects of the care the child received at the end of life and at the time of death appeared to be fixed or not modifiable, such as end-of-life course, location of death, and symptoms at the end of life. However, these details may change and shift over time as parents retell their stories and restructure the narrative of their child’s life. This process of making sense of and attempting to find some meaning in the illness and death (a desire expressed by some, not all, families) can be facilitated by mental health professionals.

Three healthy siblings complained to the psychologist: “Every holiday our parents say: ‘Let’s make this holiday perfect for your brother, since it may be his last.’ Meanwhile, he has lived for four years. How long are we supposed to keep this up?^{32(p. 73)}

Bereaved siblings face many challenges that may continue for years. With the death of the patient, they suffer multiple losses: not just of their brother or sister but also of the roles that were inherent in the relationship.^110,111,112 Siblings must negotiate this permanent loss while feeling the psychological distance of their parents who are immersed in their own grief. Siblings struggle with overwhelming sadness and other intense feelings that are strikingly similar to those faced by bereaved adults. Children often report previous losses; thus a “loss history” is crucial in understanding their strengths and vulnerabilities. Young children’s prior experience with death, if any, is typically the loss of a grandparent or a pet. They may also talk about objects that they have lost, especially if they are associated with their brother or sister. Children often report traumatic memories as well as express fears for the future. Frightening images tend to focus on the illness itself, such as how the person looked, visible symptoms, medical technology, or on the viewing, funeral, or burial. Children may express several worries, including the possibility of other losses, possible harm to themselves, loss of a specific aspect of the sibling relationship, religious concerns, and/or contagion and familial risk of illness. Adolescents often express sadness about the future (e.g., my brother or sister will never know my children). Anger at the injustice of the loss, as well as at the pain that they must now suffer, takes on many forms including verbal outbursts, physical aggression or other forms of acting out, sleep and somatic disorders, and school difficulties. Somewhat paradoxically, some children may withdraw from others, especially their family, as a part of their grief experience.

One of the most common—and most painful—aspects of sibling bereavement is a child’s sense of guilt. The guilt may focus on an act, word, or thought that was committed or omitted, real or imagined, rational or irrational. Whatever the source, its existence may sharply exacerbate the loss and complicate grief.

A 17-year-old girl who had served as a stem cell donor for her sister created the drawing in (Figure 15.2), 2 years after her sister’s death. (She also wrote the “Sibling Reflection,” later in this chapter.)

The frequent and inset intrusion of traumatic thoughts or an unrelenting sense of guilt often signals the need for psychological treatment. Children may also grapple with the fact that their loss reverberates throughout the social environment, often bearing a combination of both positive and negative consequences, such as the outpouring of support versus stigmatization.

Although limited, research on bereaved siblings is growing and new scales and instruments are being developed to better understand the sibling grief experience and how this may change over time.^113,114 Siblings are often referred to as being invisible because of the parents’ intense involvement in the care of their ill child.¹¹⁵ During the illness, the siblings desire open and honest communication within the family, adequate information from clinicians, involvement in the care of the sick child, and support to continue their own interests and activities.^{115,116,117,118} In fact, bereaved siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say goodbye, and perceived negative impact of the cancer experience had higher levels of distress and lower social support scores.¹¹⁹ Parents often try to protect siblings from involvement in the child’s illness, particularly end-of-life care, thinking that it will shelter them from trauma. Yet this well-intentioned approach may instead lead siblings to feel abandoned and potentially excluded from the family tragedy,^112,120 with long-term impact caused by these feelings.¹¹⁹

Like parental grief, the bereavement experience of siblings is slow to improve and long-lasting. In a survey-based study including siblings 2–9 years after the death of a sibling, the majority of siblings noted that they had not “worked through” their grief.¹²¹ Following the child’s death, bereaved siblings may experience both a positive and negative change to their lives.¹²² For example, bereaved siblings have reported that family relationships may become closer in some families, but more distant for others. Some bereaved siblings have improvements in school performance after the death, whereas others have experienced greater difficulties post-death. Siblings may experience changes in personality, schoolwork, goals and life perspective, activities/interests, and relationships with family members and peers; these changes have been found to continue for years following the death.^122,123

Siblings may be at increased risk of psychological sequalae.¹²⁴ Compared to nonbereaved individuals, bereaved siblings are at increased risk of low self-esteem, low levels of maturity, and difficulty falling asleep.¹²⁵ During the first year after a sibling’s death, rates of anxiety, depression, and illicit substance use increased before returning to baseline.¹¹⁹ All bereaved siblings indicated that their loss still affected them an average of 12 years later.¹¹⁹ A population-based study in Denmark showed bereavement in childhood due to sibling death was associated with an increased risk of both short- and long-term mortality.¹²⁶ There has been no significant change in self-reported peer relationships in siblings of children who died from cancer.¹²⁷

There is some evidence that certain groups may be particularly vulnerable to negative effects following a sibling’s death. One study indicated that younger (elementary school aged) and male siblings may have more social difficulties in bereavement, including more isolation, less acceptance, and fewer friends.¹²⁸ Additionally, children who serve as a donor of hematopoietic stem cells for their sibling may require special consideration. Studies have found sibling donors from transplants that resulted in the recipient’s death reported anger, guilt, and blame.¹²⁹ Negative emotions were reported by siblings who felt inadequately informed of possible complications from the procedure and/or the cause of the recipient’s death, perceived a lack of support from family and doctors after the sibling’s death, and internalized their feelings.^129,130 Further investigation into understanding the unique needs of these bereaved siblings is needed to advance specific support for this population.¹³¹ The following reflection is by a bereaved sibling, in which she shares her experience during her sister’s treatment and following her death. She also is the artist of Figure 15.2: Powerless.

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