BEREAVEMENT EXPERIENCES AFTER THE DEATH OF A CHILD
The death of a child of any age is a profound, difficult, and painful experience. While bereavement is stressful whenever it occurs, studies continue to provide evidence that the greatest stress, and often the most enduring one, occurs for parents who experience the death of a child [1–6]. Individuals and families have many capabilities and abilities that allow them to respond to interpersonal loss and to emerge from the experience changed but not broken. The few studies that have compared responses to different types of losses have found that the loss of a child is followed by a more intense grief than the death of a spouse or a parent . This conclusion must be considered cautiously, however, since these studies have typically confounded sample differences in age and degree of forewarning . Forewarning is important because according to the Centers for Disease Control and Prevention , about half of child deaths occur during infancy, most with limited preparation time. Unintended injuries are the leading cause of death in children age 1 to 14 and account for more than half of all deaths among young people 15 to 19 years of age. In addition, while the overall death rate for children aged 14 and younger has declined substan-
tially since the 1950s childhood homicide rates have tripled and suicide rates have quadrupled . Recent findings suggest that parents of children who die from any cause are more likely to suffer symptoms of traumatic stress and experience more severe problems with emotional dysregulation than occurs with the death of a spouse .
Integrating the loss of a child into the life narrative, making sense and new meanings of such a wrenching event, presents a challenge to parents and family . Although once common, deaths of children between the ages of 1 and 14 now account for less than 5 percent of all deaths in the United States; about 57,428 infants, children, and adolescents died in 1996. In contrast to the past when families might have had several children die, death in childhood is now rare. Children are expected to live to adulthood. Conflicting with current life-cycle expectations, the death of a child may be experienced as the death of the parents’ future dreams as well as creating a profound change in their present roles and functioning. Increases in the incidence of suicide and homicide in adolescents and random acts of violence in our society have increased the risk of traumatic stress responses for bereaved family members.
Medical advances have prolonged the dying process for children as well as adults, making terminal illness in children longer and more complex, often requiring parents to make difficult decisions about end-of-life care. Preliminary research evidence suggests that family bereavement may be adversely affected by the inability to reduce suffering during the child’s dying process .
This appendix reviews the unique features of the parent role; the importance of the parents’ continuing memory of the child; the impact of variations in atypical, unresolved, and catastrophic deaths; and the special features of parents’ loss of an infant, a school age child, and an adolescent, and the impact of a child’s death on siblings and other family members. Also reviewed are interventions and research directions.
BEREAVEMENT, MOURNING, GRIEF, AND COMPLICATED GRIEF
Bereavement is a broad term that encompasses the entire experience of family members and friends in the anticipation, death, and subsequent adjustment to living following the death of a loved one . It is widely recognized as a complex and dynamic process that does not necessarily proceed in an orderly, linear fashion [14, 15]. Rather, individuals have concurrent and overlapping reactions that may recur at any time during the family’s bereavement process. Bereavement includes the internal adaptation of individual family members; their mourning processes, expressions, and experiences of grief; and changes in their external living arrangements, relationships, and circumstances.
Grief is a term that refers to the more specific, complex set of cognitive, emotional, and social difficulties that follow the death of a loved one . Individuals vary enormously in the type of grief they experience, its intensity, its duration, and their way of expressing it. Mourning is often defined as either the individual’s internal process of adaptation to the loss of a loved one or as the socially prescribed modes of responding to loss, including its external expression in behaviors such as rituals and memorials. Taken together, the grief and mourning processes are understood to be a normal and universal part of the natural healing process that enables individuals, families, and communities to live with the reality of loss while going on with living [17, 18].
Complicated grief in adults refers to bereavement accompanied by symptoms of separation distress and trauma . It is defined as occurring following a death that would not objectively be considered “traumatic” (i.e., not resulting from an unanticipated, horrifying event) and requires that the person experience (1) extreme levels of three of the four “separation distress” symptoms (intrusive thoughts about the deceased, yearning for the deceased, searching for the deceased, and excessive loneliness since the death), as well as (2) extreme levels of four of the eight “traumatic distress” symptoms (purposelessness about the future; numbness, detachment, or absence of emotional responsiveness; difficulty believing or acknowledging the death; feeling that life is empty or meaningless; feeling that part of oneself has died; shattered world view; assuming symptoms of harmful behaviors of the deceased person; excessive irritability, bitterness, or anger related to the death). These symptoms must have lasted at least six months and led to significant functional impairment. Because parents of children who die are at greater risk for traumatic stress symptoms and emotional dysregulation, they are at greater risk of complicated grief .
Siblings of children who die have also been found to be at greater risk for externalizing and internalizing problems when compared to norms and controls [20-23] within 2 years of the death. Complicated bereavement has been less clearly defined for children but is also thought to include symptoms of PTSD, other psychological characteristics associated with this disorder, and grief. The Expanded Grief Screening Inventory is a 20-item measure developed to assess complicated bereavement in children and adolescents. Factor analysis indicates three independent factors including positive reminiscing, intrusion of PTSD on the grieving process, and existential loss [24-27]. This measure has shown strong psychometric properties and is currently being used to follow the clinical course of such complicated bereavement in children.
THE PARENT ROLE AND LOSS OF A CHILD
The process of conceiving, giving birth, and raising offspring is shared by virtually all living animals. The human experience of this process, however, adds many elements of psychological, social, and meaning construction. At various stages in the life cycle, men and women relate to child-conceiving and child-rearing roles as central to their existence. Of the bonds formed within the family, the parent–child bond is not only particularly strong, it is also integral to the identity of many parents and children . Much has been written about the significance of the parent–child attachment bond as a major organizer of the individual parent’s positive sense of self and significant relationships with others .
Parents of children and adolescents who die are found to suffer a broad range of difficult mental and physical symptoms. As with many losses, depressed feelings are accompanied by intense feelings of sadness, despair, helplessness, loneliness, abandonment, and a wish to die . Parents often experience physical symptoms such as insomnia or loss of appetite as well as confusion, inability to concentrate, and obsessive thinking . Extreme feelings of vulnerability, anxiety, panic, and hyper-vigilance can also accompany the sadness and despair.
Grieving parents evidence anger as part of the normal reaction to the loss of their child [17, 29–33]. This may be expressed as intense rage or as chronic irritation and frustration. It may be directed at the spouse, at other family members, at the professional staff, at God, at fate, or even at the dead child. Anger may also be directed at the self, creating feelings of self-hatred, shame and worthlessness [28, 34-36].
Children take on great symbolic importance in terms of parents’ generativity  and hope for the future. All parents have dreams about their children’s futures; when a child dies the dreams may die too. This death of future seems integral to the intensity of many parents’ responses. Three central themes in parents’ experience when a child dies include (1) the loss of sense of personal competence and power, (2) the loss of a part of the self [38, 39], and (3) the loss of a valued other person whose unique characteristics were part of the family system. While guilt and self-blame are common in bereavement, they are especially pronounced following the death of a child. The parent’s role competence as the child’s caregiver, protector, and mentor is severely threatened by untimely death.
Parents assert that their grief continues throughout their lives, often saying, “It gets different, it doesn’t get better.” Words such as “closure” can be deeply offensive. The few studies that have followed parents for years after the child’s death support the concept of their preoccupation with the loss of children across the life cycle [4, 40–42]. Klass  refers to the “amputation metaphor”: the vivid sense of a permanent loss of a part of
oneself that may be adapted to, but will not grow back. Freud’s letter to a friend about the loss of his eldest daughter describes this eloquently:
For years I was prepared for the loss of my sons (in war); and now comes that of my daughter. Since I am profoundly irreligious there is no one I can accuse, and I know there is nowhere to which any complaint could be addressed. “The unvarying circle of a soldier’s duties” and the “sweet habit of existence” will see to it that things go on as before. Quite deep down I can trace the feelings of a deep narcissistic hurt that is not to be healed [43, p.20].
Parents resist the idea that they will recover from their child’s death. Rather than “recovery” or “resolution,” which suggest a return to pre-loss functioning, “reconciliation,” and “reconstitution” have been used to describe the post-death period because these terms more adequately reflect the profound changes that take place when a child dies. They express the reality that even the successful mourning process results in a transformation in the person consequent to the death of a loved one . Despite traditional assumptions that all bereaved individuals must mourn, prospective studies have shown that considerable numbers of bereaved individuals evidence no overt signs of grieving or of the reconstitutive processes associated with grieving (for a review see ). The question these findings raise is to what extent this type of resilient pattern may also be found among those mourning the death of a child .
CONTINUING BONDS: THE TWO-TRACK MODEL OF BEREAVEMENT
There is little doubt that most persons respond with emotional and physiological distress following loss. Equally apparent is the fact that the bereavement response is predominantly one of readjusting and recalibrating the often covert psychological attachment to, and preoccupation with, the person now deceased. However, most studies have assumed that a reduction of symptoms defines “recovery” and constitutes a successful bereavement outcome. The parent’s continuing investment in the relationship with the deceased has often been neglected. In a recent study of parents of infants who died of SIDS (sudden infant death syndrome), the phenomena associated with the bereavement response had a very different time frame and trajectory when the continuing investment in the relationship with the deceased was assessed .
The Two-Track Model of Bereavement [41, 42] combines the perspective of both the symptomatic bio-psychosocial response to bereavement and the relationship with the deceased. The bereavement response is understood to unfold along two multidimensional axes or tracks that are generally
significant to understanding human adaptation to life demands. The first track focuses on how people function generally, and in the case of loss, it focuses on how functioning is affected following death. The second track focuses on how people are involved in maintaining and changing their relationships with significant others. In the case of bereavement, this relational track focuses on the bereaved parent’s emotions, memories, and mental representations as they relate specifically to the deceased. Thus, the human bereavement response is not only triggered by the death of a significant person, but also initiates a degree of a continuing, albeit quite varied and modified, relationship to that person across the life cycle.
The implications of the Two-Track Model of Bereavement are relevant to theory, research, social support, and clinical and counseling interventions. It is important to consider not only the degree of overt function and dysfunction following loss, but also the ways in which memories and thoughts about the deceased are discussed, thought about, and serve an active role in the emotional and mental life of the bereaved. This ongoing connection is most vividly and consistently reported, indeed insisted on, by many bereaved parents in relation to the death of a child.
The two-track model proposes 10 domains for assessment on each of these axes following loss. On Track I, the individual’s functioning is assessed in relation to (1) degree of anxiety and depressive responses and triggers of such responses; (2) other affective responses such as guilt and helplessness; (3) somatic concerns and dysregulation; (4) psychiatric symptoms including orientation and mental status, PTSD (post traumatic stress disorder) in both full-blown and partial forms, and suicidal ideation; (5) self-esteem; (6) the individual’s ability to work or perform major life tasks; (7) the management of family relationships, including the relationship to spouse or partner, to other children, and to the extended family; (8) the nature and degree of involvement in interpersonal relationships outside the family; (9) the meaning framework or structure in which the bereaved is embedded and its current power; and (10) the degree to which the bereaved is able to invest emotional energy in life tasks and the type of life tasks that are engaged.
On Track II, the nature of the relationship to the deceased is assessed on 10 other dimensions. These include (1) the degree of preoccupation with memories and thoughts of the deceased; (2) the extent to which the description of the deceased is characterized by an inability or unwillingness to express the personal feelings brought about by the death; (3) the degree of idealization of the deceased; (4) the report of psychological conflict or contradictions in the relationship; (5) the degree and type of positive affect and emotion; (6) the degree and type of negative emotion toward the deceased; (7) the degree of closeness or distance from the relationship and experience of the deceased; (8) the affective experience when discussing the
deceased (e.g., a parent who might say, “I always feel guilty thinking about how my son died”); (9) the presence of previously described grief phases of shock, seeking reminders of the deceased, disorganization, and restoration of a coherent life flow; and (10) the manner in which the deceased is memorialized both publicly and within the family. The individual with complicated grief is at greater risk for a variety of psychopathologies and physical illnesses.
ANTICIPATED, SUDDEN, TRAUMATIC, AND CATASTROPHIC DEATHS
The particular circumstances of the death (i.e., whether it was an anticipated death from illness, a sudden death, the result of a natural disaster or a terrorist attack that affects an entire community) also shapes families’ bereavement reactions and service needs. When a child’s illness is long, arduous, and filled with chronic crises, parents may develop unusual coping skills to sustain themselves and their family over many months and years or they may become worn down and depleted emotionally and financially by the entire process. Therefore interventions that provide practical and emotional support, skills training, and respite throughout the often long and crisis-filled period of the child’s illness may aid families’ bereavement. Psychological processes that parents have described as helpful include working through the need to assign blame for the disease including self-blame, becoming well informed about the disease and treatment, developing a more realistic assessment of the medical care system and an ability to communicate with professionals, becoming the child’s advocate, and focusing on immediate treatment successes while maintaining a long-range perspective.
When the child’s death can be anticipated, evidence suggests that effective management of the terminal illness period may also benefit the family’s bereavement. In Wolfe’s study , parents who were informed in a timely way that their child’s illness had become terminal, that death was now inevitable, were able to make decisions that lessened their child’s experience of pain and suffering. Compared to parents who were informed later, parents informed closer to the time the physician documented the terminal nature of the illness were able to reflect on the death with greater feeling of their own effectiveness in providing their child a peaceful death. With the longer terminal illness period made possible by medical advances, it is important for physicians to recognize and inform families when there is no realistic possibility of significant extension of life so that they can make informed decisions about palliative care or other concurrent model of care rather than curative treatments. Wolfe also found that families may be helped during this highly stressful period by mental health interventions.
Trauma theories and grief theories developed in separate literatures,
and only recently has research begun to integrate the findings, concepts, and responses related to these overlapping but distinct conditions [45–48]. There is some evidence to suggest that those bereaved by traumatic deaths may benefit from initial interventions focused on reducing terror, fear, and anxiety about the circumstances of the death—that is, by interventions similar to those typically used for PTSD. Grief therapies have also been found effective in situations of complicated grief, of which traumatic grief is one example . A failure to address the intertwining of these symptoms of trauma and loss early in their bereavement may compromise the individual’s capacity to experience optimal recovery. For example, cognitive behavioral interventions suggested for trauma symptoms in a treatment manual by one research team include stress inoculation therapy, gradual exposure, and cognitive processing. Stress inoculation involves such techniques as feeling identification, relaxation techniques, deep breathing, progressive muscle relaxation, thought stopping, cognitive coping skills, enhancing the individual’s sense of safety, psycho-education, and understanding the connection between thoughts, feelings, and behaviors . Gradual exposure aims to separate overwhelming negative emotions such as terror, horror, extreme helplessness or rage from thoughts, reminders, or discussions of the death of the loved one. Cognitive processing aims to identify, correct, and challenge thoughts about the death that are unhelpful or inaccurate (for example “my dad must have suffered terrible pain during the explosion in the WTC”). In contrast, bereavement interventions focus on understanding the mourning process including feelings of loss and anticipation of reminders; resolving ambivalent feelings about the deceased, preserving positive memories of the deceased, accepting that the relationship is one of memory and recommitting to present relationships . Nader describes convincingly how trauma prevents reminiscence necessary to grieve by evoking feelings of terror [25, 49]. Conversely, grief can also act as a traumatic reminder to the individual who may be experiencing a sub-clinical response to trauma or meet criteria for a formal diagnosis of PTSD, increasing anxiety in either situation. Those bereaved by deaths seen as nontraumatic are more apt to focus on their relationship to the deceased as an important feature of the experience of loss [44, 50]. Many aspects of parental grief reactions in response to the death of a child have been viewed as overlapping with traumatic symptoms, and indeed even parents whose children have cancer have been assessed to experience high levels of traumatic stress .
While the added stresses on families’ bereavement related to violent and intentional death have been documented, bereavement interventions or follow-up care have only recently been offered in emergency room settings in a systematic way. Even when offered, families affected by homicide have seldom participated in follow-up bereavement services [52, 53]. Manage-
ment of the final moments of an intentional or unintentional sudden death of a child continues to challenge professionals. Trauma research consistently supports the benefit of early intervention with traumatized individuals or families close to the time of the death in order to prevent later adverse reactions . However, which interventions are most effective in which situations continues to be debated and awaits further research. For example, a summary of studies of critical stress debriefing in a 2001 review of the effectiveness of psychological debriefing concludes that though debriefing holds potential as a screening procedure, it does not prevent psychiatric disorders or mitigate the effects of traumatic stress. Still, people generally find the intervention of debriefing helpful in the process of recovery .
Catastrophic events such as the Oklahoma City bombing and the New York City World Trade Center attacks are very public with broad media coverage. They involve large numbers of deaths and unusual situations that present unique coping challenges during bereavement. Each catastrophic event has important commonalities with other catastrophes, but also important differences. It is these similarities and differences that need to be identified and studied in order to sharpen the ability not only to treat grief reactions, but also to prevent the development of PTSD as well as other forms of complicated bereavement
The World Trade Center attacks involved an attack from an outside hostile enemy that mobilized patriotism and national anger and gave rise to an ongoing war on terrorists throughout the world. Victims, especially firemen, policemen, and rescue workers were hailed as heroes in a war, killed in the act of protecting or saving others. Victims were mostly adults. Particular stresses for survivors include the ongoing search for bodies or body parts and the many continuing reminders related to the ensuing war as well as the many public memorials. For some, finding no remains hinders progress with the mourning process. Early reminders included frequently announced threats of other impending terrorist attacks and other purported enemy acts, such as sending anthrax in letters. The war itself constitutes a reminder interspersed with media reports of investigations about “what went wrong” that permitted the attack and the deaths of thousands.
POSITIVE AND NEGATIVE IMPACT OF A CHILD’S DEATH ON SELF, MARITAL RELATIONSHIP, AND FAMILY
Bereaved parents report a number of potentially positive as well as negative reverberations as a consequence of adjusting to loss. Bereaved individuals discuss their experience of having changed as a result of the loss, of learning to value anew what is really important to them, and of reviewing priorities. Some relationships with families and friends are strength-
ened, others are found wanting. Perhaps the most important relationship affected by child loss is that of the parents.
The majority of studies on this issue have focused on divorce as an indicator of stress upon the parents. However, there is a great deal of variability across studies regarding the divorce rates following a child’s death. A recent review of these studies concluded that some writers give overly high estimates of divorce for which there is no empirical support . On the other hand a substantial minority of couples do seem to experience severe marital distress. Bohannon , for example, conducted a longitudinal study of couples’ grief responses and marital functioning. In her study, about 30 percent of husbands and wives reported having more negative feelings toward their spouse since the death; 19 percent of husbands and 14 percent of wives felt their marriages had deteriorated since the death. About the same proportion had considered divorce after the death of their child. A major difficulty in doing such research is that the frequency of divorce in the U.S. population is about 50 percent. Separating the “real” contribution of the death of a child from other causes of marital strife in bereaved families is a difficult research challenge.
To address this issue Compassionate Friends, a self-help organization for bereaved parents, recently completed a survey of 14,852 parents who had lost a child. When a Child Dies: a Survey of Bereaved Parents, was conducted by NFO in 1999 and published on the Web site of compassionate friends” (www.doorsofhope.com/grieving-healing/compassionatefriends.htm). Its concern was how troubled newly bereaved parents frequently feel when they read or hear about high divorce rates among couples following the death of a child (80-90 percent by some estimates). The survey found that of those who completed it 72 percent of parents who were married at the time of their child’s death are still married to the same person. The remaining 28 percent included 16 percent in which one spouse had died, and only 12 percent of marriages had ended in divorce. While acknowledging the potential bias in its sample, the conclusion was that the divorce rate among bereaved parents was substantially lower than is often cited.
Most studies of parent divorce after the death of a child are limited by methodological problems including the lack of a control group, selection bias, and high attrition rates. The highest estimates of divorce seem overstated. Indeed some studies have found that as many as 25 percent of couples experience increased closeness in their marriage [2, 33]. As Rando suggests  bereaved couples need to be informed that grief is a very individualized process experienced differently by each partner and reassured that relationships can and do survive after a child’s death.
A number of studies have investigated the marital relationship and tried to identify gender differences that may account for conflict and distancing
between couples. These and other common problems between parents after the death of a child include the following:
Breakdown in communication, such as avoidance of all discussion of the death or misunderstandings about it, is often associated with marital distress.
Discordant coping is related to differences in grief expression between men and women. Women tend to use more emotional expression as they process discussions to cope with the stress, while men try to control their emotions and cope with them alone, engaging in solution-focused discussions and activities.
Incongruent grieving in which father and mother react to the infant or child death with different levels of intensity and for different periods of time—women typically grieve more intensely and for longer periods of time than do their spouses . One study reported continued marital distress from such variations in grief as long as two to four years after the child’s death supporting the enduring nature of such stresses .
Low intimacy in which the combination of incongruent grieving, discordant coping, communication breakdowns, and other misunderstandings, as well as different needs for sexual intimacy are thought to contribute to a low sense of intimacy between parents [58, 59]. Lower levels of intimacy and support from one’s partner are associated with greater incidence, intensity, and duration of grief symptoms for both men and women [14, 38, 60-62].
IMPACT OF THE LOSS ON SIBLINGS AND OTHER FAMILY MEMBERS
The death of a child may be one of the most difficult and profound experiences for surviving siblings, grandparents and other family members as well as parents. In the case of an illness such as childhood cancer, the death may have been preceded by months or years of stressful treatments in which family attention and resources were focused on the ill child. In 1981, the title of an article on sibling loss, “Siblings: The Forgotten Grievers” , reflected the lack of attention in practice and research to sibling bereavement. Over the past two decades, clinical and research attention to sibling loss, although relatively new, has increased significantly . This development occurred in response to a growing awareness that earlier beliefs of children’s inability to grieve were incorrect. In addition, qualitative studies and personal narratives documented the intensity of sibling grief
and sometimes lifelong negative consequences of failure to recognize and support siblings in their grief.
Retrospective qualitative studies suggest that surviving siblings may have feelings of isolation and social withdrawal at home and with peers [23, 65, 66]. They have reported feeling different from peers as a result of their experiences and typical peer activities (e.g., interests in fashion, sports) may seem less important after the death. Parents and teachers reported that siblings have significantly lower social competence and higher social withdrawal scores on standardized measures within two years of the death [20, 21]. Siblings themselves describe feeling guilty, anxious, and depressed and parents have noted problems with sleeping, nightmares, anxiety and post-traumatic stress symptoms [22, 23, 67, 68].
Explanations for siblings’ distress have focused on the parents’ preoccupations with the child who has died and distraction with their own grief causing the neglect of the siblings. Bereaved parents have reported high levels of parenting stress as they are confronted with many new daily responsibilities. Siblings describe a lack of communication, decreased availability and support from parents . Some have suggested bereaved parents may also become closer to and overprotective of surviving children .
As understanding of children’s capacity to grieve has grown [44, 70] attention has turned to studying the variations in their grief experiences. Research has focused on the development of a measurement tool for assessing sibling bereavement, studied effects of sibling death on younger children and adolescents, identified longer term outcomes of sibling bereavement, and documented the natural history of sibling bereavement [3, 65, 71, 72]. Practice guidelines for interventions with bereaved siblings have also been developed .
Few interventions of bereaved siblings have been systematically studied in relation to their effectiveness . However, Davies, in her overview of the literature, suggests a number of principles that have emerged that may inform the structure of interventions and provide helpful thematic foci with the individual child and adolescent . The following principles expand on Davies’ discussion.
Children of all ages can benefit from validation of the normalcy and appropriateness of a broad range of grief reactions to the death of a sibling. Recognition of their unique relationship to the sibling and their individual responses to the loss of that relationship within their personal and familial situation is fundamental to intervention with bereaved siblings.
Context is important and includes taking account of the timing and specific circumstances of the death, the ethnicity and culture of the family. Siblings are likely to benefit from being included in interventions earlier in
the trajectory of the sibling’s death and continuing follow up contact over a longer period of time than generally occurs. Children facing the impending death of a parent experience greater anxiety and depression than they do immediately after the death occurs . This finding suggests that the terminal illness period offers the opportunity for family members to prepare for a loss and provides the possibility of preventive intervention. Similarly, facing the death of a sibling gives an opportunity to provide information, education, emotional support, and preparatory actions that can mitigate the adverse consequences of the death. Knowledge of longer term effects of sibling and parent death is limited, therefore interventions need to provide for monitoring of children’s and families’ functioning over time in order to identify later effects and infuse timely services.
The details of the specific circumstances of the death, (e.g., anticipated, sudden, catastrophic) affect how siblings and family members experience the loss. They may confront more or less traumatic stress, greater or less avoidance of reminders and thoughts about whether the death could have been prevented, and more or less hopefulness about the consequences of the death on the family and their future opportunities in life.
The importance of the family’s ethnicity and traditional way of coping with stresses including death is important in intervening effectively with a broad range of diverse family cultures. For example the level of openness in communication of facts and feelings about the loss with both adults and children, the expectations of the length and quality of the grief process, the use of particular rituals and symbolic processes, and decision making patterns can vary enormously and should inform intervention approaches.
Developmental attributes are likely to influence how siblings experience and express their loss. For example, young children are more likely to harbor unrealistic fears of their own vulnerability to the illness, injuries, or condition their sibling experienced. Adolescents are more vulnerable to depression in response to the parents’ grief and subsequent withdrawal from them as the adolescent goes through normal separation from the family. Knowledge of these differences in cognitive, emotional, and social/ ecological capacities should be integrated into intervention approaches and thematic foci.
A family and interpersonal focus is essential, whether the primary target of the intervention is the parent or the child. The parents’ management of their own grief and construction of the meaning of the loss has an enormous impact on surviving children. The degree to which they blame the surviving children, are able or unable to re-establish a positive relationship to the siblings, to engage in the siblings’ growth and view their progress and development as uniquely important as the lost future of the child who died has an impact on the stress of the situation for siblings. Facilitating communication and understanding between parents and their children
about these often unacknowledged dilemmas and management of family communication during terminal illness and after death is an important component of intervention efforts. Similarly the parents’ own positive mental health and ability to fulfill important life goals going forward contributes to a stronger support system for surviving siblings.
Empowering a broad range of support systems is also an essential part of an intervention. As children develop, they are affected by an increasing number of social, service, and political systems: e.g. extended family and friends, teachers, coaches, peers, health and mental health professionals, religious groups and institutions, community services, and national and international policies and structures . Influencing these systems through education, dissemination of information, consultation, and support can significantly expand the help available to siblings and other family members.
Qualitative analyses of sibling experiences highlight the following themes as a focus for interventions with siblings.
Loss of affection, attention, continuity, and stability within the family due to parental distress and preoccupation with their own bereavement. This can include multiple separations and lack of attention from parents during the ill sibling’s terminal illness or unavailability due to parents’ traumatic stress responses after the sibling dies. Stresses on the marriage after the death of a child affect the siblings as well.
A lack of social validation of siblings’ grief experiences. This can be due to lack of understanding of children’s grief, underestimation of the importance of the sibling relationship, or fear and lack of knowledge about how to respond to the grief of another child by peers and adults. A student bitterly reported a teacher’s question, “Why are you upset, he was only your step-brother?” “But he lived with me all my life,” she said to herself. Siblings experience a high level of social constraint in response to their grief.
Perceptions of not being good enough to fill the void in the parents’ affection. Parents’ intense preoccupation with the dead child is interpreted as a lack of love of the surviving sibling—“the wrong child died.” The sibling feels devalued, alienated, and isolated from both family and peers.
Davies summaries these themes from the sibling’s perspective  (pp. 211-216):
“I hurt inside” requires comfort, consolation, and validation of the child’s unique experience of the loss. This is a particularly challenging task for grieving parents and may be assisted by the use of peer support groups.
“I don’t understand” requires explanation and interpretation provided at a level appropriate to the child’s cognitive developmental level. Concerns about the child’s own safety and well being in addition to other facts about the situation should not be overlooked. Resources available to parents and professionals include books that focus on helping children with a broad range of grief reactions and types of losses [76-78].
“I don’t belong” requires including and involving the child before the death occurs in the case of anticipated loss, during the death and burial rituals, and in the post-death bereavement process. Research continues to support the helpfulness of children’s and adolescents’ involvement in these processes when they are given adequate preparation for their particular role.
“I’m not enough” requires continued reassurance and validation of the unique worth of each child. This response is somewhat unique to sibling loss compared to other types of losses and has at times powerfully affected siblings’ adaptation.
IMPACT OF THE DEATH OF INFANTS, OLDER CHILDREN, AND ADOLESCENTS
The deaths of infants, either through miscarriage, stillbirth, newborn death, or SIDS, were until recently regarded even by most professionals as “nonevents” or “non-deaths” affecting unnamed “non-persons” . Greater awareness of the importance of validation and recognition of the significance of the loss of infants to parents has resulted in the development of programs to guide parents in their expression of grief and to encourage them to engage in rituals from their particular religious, cultural, or ethnic background. While there are common issues in bereavement for all infants, each of these circumstances of infant death brings its unique stresses related to the way in which it occurs as well as to the individual parent(s) .
Stillbirths. A stillbirth turns an anticipated joyful event into tragedy. Stillbirth can assume two forms. The more common occurs when the baby was viable and then dies during labor or delivery. In the second type the fetus dies in utero and the mother is forewarned of the death days or even weeks before the delivery. Particularly difficult and stressful for the mother is carrying a dead fetus when movement has ceased. Parents often describe these situations as the simultaneous birth and death of the child.
Perinatal Deaths. With the dramatic increase in the survival of low birth weight babies, the death of a very tiny, sick, or deformed newborn is no longer always expected. Parents’ hopes may be buoyed with the suggestion of each additional medical procedures, and the added time that the
child lives increases their attachment. The advent of new technologies and surgical procedures that might prolong survival but at a price of pain, discomfort, or survival with gross disfigurement or retardation presents new problems to both parent and physicians. A not-uncommon situation occurs when careful diagnostic assessments and open discussions between physician and family have led to a decision not to perform a life-saving operation, with a change of mind by the parent following delivery when the full-blown symptoms of a lifelong disability are only minimally apparent. This situation may engage them in complex legal and ethical issues that intensify the emotional difficulties parents have in dealing with their loss.
Sudden Infant Death Syndrome. SIDS deaths declined by 46 percent from 1983-1996 due to successful education and broadly disseminated ad campaigns. SIDS usually occurs within the first year of life and is the most common form of death after the neonatal period. The particular stress of this type of death relates to the ambiguity about its cause that leads parents to struggle with guilt and whether the death could have been prevented. Family and friends often do not know how to respond and therefore withdraw, inadvertently creating a “conspiracy of silence.” Here, health care personnel can make a contribution by providing information about the nature of SIDS that helps reduce ambiguity about the cause of the death.
Grief Reactions to Infant Death
A very common grief reaction after perinatal or SIDS death of an infant is intense preoccupation with thoughts and images of the dead baby. According to several studies, between 65 and 95 percent of mothers and 51 and 85 percent of fathers report problems with preoccupation or irrational thoughts about their dead baby during the acute phase [81, 82]. Many parents report a sense of the baby’s presence—of hearing their dead baby cry—and some mothers say they feel fetal movements for months after the delivery. Others report illusions or hallucinations that their baby is still alive. This can be disconcerting to parents and family members; however it is reported in studies of many bereaved parents. Like many other traumatic events, the death of an infant challenges parents’ assumptions about their own and their families’ safety in the world. Anger and irritability about the injustice and unfairness of losing their child are common grief responses and may be directed toward health care professionals, their spouse, God, or fate. Alternatively, these may be emotions directed inward toward themselves resulting in lowered self-esteem, self-blame, and depression. Parents also experience intense anger and jealousy toward other parents who have living babies.
In general, parents of infants who have died from whatever causes share the experience that their friends and family do not know their infant,
that they may not recognize or empathize with the full extent of their loss . Many parents of infants who die report being particularly stressed by people who avoid any discussion of the loss or offer clichés or dismissing statements such as “you can have another child”. The advice to have a new child as a way of bypassing or avoiding the pain of loss for the particular child who died remains controversial because findings from research are contradictory . Friends as well as other family members may be impatient about the “slow” rate of parents’ recovery from the loss. As in most forms of bereavement, depressive feelings are often present following this type of loss. In fact, bereaved parents have been found to experience elevated symptoms of depression more than two years following perinatal death of their child [57, 84].
Almost all parents search persistently for explanations of the cause of the death following perinatal or SIDS death. Studies suggest that most families believe that it is highly important for them to understand the cause of their baby’s perinatal death. Often there is no definite answer or explanation, which they find frustrating. Of interest in one study was the tendency of parents to blame the mother for the baby’s death (26 percent of mothers and 13 percent of fathers), despite explanations by their physician to the contrary.
Across studies, mothers consistently report more intense and prolonged grief reactions than fathers except for the area of denial where fathers report greater denial in the immediate aftermath . These differences are reported to cause additional stress and strain on the marriage relationship and to reduce the support available from the intimacy it could provide. A range of theories are suggested to explain differences that could be the subject of future research such as the differences in the bond formed between mothers and fathers and the developing infant [2, 85–87]; general gender differences in reaction to stress; and differences in gender-role socialization involving emotional expressiveness and willingness to acknowledge and report emotions [58, 61, 88–90].
Deaths of Children and Adolescents
Deaths are less common among older children than among infants, with accidents, especially among adolescents, the most frequent cause. Cancer is the leading illness cause of death in children and adolescents. Parents who experience the death of an older child usually have many of the feelings already discussed in relation to infants. However, more is known about the grief of parents of children who die of an illness than about the grief of parents whose children die suddenly by accidents, homicide, suicide, natural, or man-made disasters . One reason for this greater knowledge may be that parents already connected to the health system during
their child’s illness are more likely to participate in bereavement services after the death as well as having access to services during terminal illness . Retaining parents in need of assistance who have experienced sudden death in formal longer-term bereavement services remains a challenge . At the same time, the existence of self-help organizations focusing on child loss, such as Compassionate Friends, provides alternative avenues for bereaved parents to receive support; yet such organizations serve only 25 percent of bereaved parents. These organizations have been the focus of significant studies on the services they provide to parents .
Families’ avoidance of formal and informal support services is thought to reflect, in part, avoidance of traumatic reminders. However, the lack of participation in interventions may also reflect inappropriate treatment models that fail to respond to the needs of families who have experienced the sudden death of a loved one . An example of this problem was reported by the William Wendt Center in Washington, D.C., a program developed to provide trauma and bereavement services to families at the time of identification of the body of a loved one who died suddenly from accident, homicide, or suicide . This innovative service established a site in the coroner’s office where providers can immediately meet with families upon identification of the body. The center soon discovered that in addition to trauma and grief counseling, case management services were needed to help families with the consequences of such losses (e.g. loss of housing, dramatic loss of income, unsafe living environments, and the loss of support networks) . Longer term follow-up of families affected by such traumatic deaths remains a challenge. With parents of older children, as with parents of infants, the intense nature of their response to the death of their child is thought to be related to multiple factors:
the love for the unique child who has died;
the challenge to parental identity as competent protector, provider, nurturer;
the isolation and loss of social support that often follows such stigmatized deaths; and
the existential crisis of finding meaning in life without parenting this child.
It is important to keep in mind that there are numerous individual, familial, and cultural differences that make responding appropriately to another person’s grief anything but a formula. The United States, as most Western countries, has a variety of cultural, religious, and ethnic variations that mediate and modulate the experience of grief and mourning . There is mounting evidence that forms of support that leave room for the bereaved to discuss their thoughts, feelings, and experiences are often seen as the preferred mode of response to bereavement [19, 99, 100]. This is in contrast to approaches that emphasize a more active approach to the bereaved, one that confronts them with models of the “appropriate ways” in which to grieve and expects linear progress along some stage model of grief. It is sometimes surprising to laypersons and professionals alike the degree to which people are willing to educate others about their culture, share elements of their experience, and feel benefited by the experience. What is needed in the listener is an ability to listen with a degree of empathy and patience.
Evidence suggests that parents of newborns, children and adolescents who die benefit from a range of early intervention services [62, 101, 102], yet bereavement programs connected with medical care are only beginning to develop. A small percentage of parents who experience child loss contact self-help organizations. Child death is infrequent in the United States and many parents feel stigmatized by their situation, become isolated, and find outreach difficult. This small number of parents who engage in support programs or participate in research on bereavement following the death of a child has limited knowledge development and innovation. Newer intervention models and interventions described below are promising as they are located at times and in places that are more accessible to parents and they focus on the broad range of needs of parents, siblings, and extended family after a child’s death. While additional research is needed to clarify post-bereavement outcomes both short and long term, existing knowledge suggests the following interventions. Those specific to families of newborns who die might include:
help parents accept the reality of their loss by gently encouraging them to see, hold, and name their dead baby and to hold and then participate in memorial services;
help parents retain important mementos such as photographs and locks of hair, hand and footprints, tangible reminders and “evidence” of the child’s presence such as bedding and clothing; and
connect families to other parents who have experienced this loss, to
self-help organizations, or to professional counseling or services that address this issue.
Interventions for families of children and adolescents might include:
accept a broad range of grief reactions without becoming judgmental or withdrawing—this may include parent’s anger, blame, humor, and inability to grieve;
provide information in multiple formats (e.g., written, audio/visual, public meeting, broader media programs, Internet based) about the bereavement process including gender differences, expected problems, needs of siblings and extended family, and available services;
include information on both trauma and grief responses of children and adults in all education efforts. This is especially important with children as so many children’s deaths occur from accidents;
create opportunities for families to meet other families facing similar situations that can make the experience less lonely as well as provide a perspective on the loss process. This includes connecting parents to self-help groups, especially those that include siblings and extended family services;
make available professional bereavement follow-up counseling for grieving family members, including individual, family, and/or group;
create a range of intervention models that address the bereavement process and are accessible to families in time and location. For example services should not be limited to once-a-week psychotherapy for one hour, to a time limited series of meetings, but models may also include less frequent, more intensive meetings offered over a longer period of time. Interventions should also be provided at places convenient to families both geographically (e.g., at home or within local communities) and/or in relation to where the child’s terminal condition is treated. Intervention models should address the broad range of families’ needs including financial and practical needs;
bereavement interventions should begin before the loss when it can be anticipated in order to take advantage of the opportunity for preparation and prevention of later adverse reactions;
create models of follow-up care that provide ongoing access and increase knowledge of longer term outcomes;
provide family focused interventions that assist parents in connecting or reconnecting with their existing families, friends, and networks of support as a means of re-establishing coherence and meaning as they go forward; and
provide specific services and outreach for neglected sub-groups of parents and family members: e.g., parents who have lost an only child,
parents who have lost multiple children, parents whose child died from accident, suicide or homicide, grandparents of children who die.
Interventions for surviving children and adolescents have been addressed in the section on siblings. Suggested models and approaches from the existing literature include the following:
provide information in multiple formats (e.g., written, audio/visual, Internet based, group meeting and larger event) for children and adolescents about the nature of grief following the death of a sibling and ways to cope with it;
provide information/consultation about ways to help bereaved siblings to parents, extended family, teachers, coaches, religious and social service organizations, hospitals and health care services, emergency services, mental health providers and the media. In this way the knowledge base and social and cultural context in which siblings experience their grief is improved. Information should include the emerging knowledge about the intertwining of trauma and grief, ways to recognize these symptoms and ways to manage them;
provide opportunities to receive mementos of the child who died and to participate in memorial services;
provide access of bereaved siblings to other bereaved children or adolescents who can share their experiences and reduce isolation. Since sibling death is infrequent in the United States, where possible, integrate children and adolescents who have experienced sibling death into existing bereavement groups and services that include children who have experienced loss from the death of a parent or peer or through divorce. Consider the use of the Internet and teleconferencing as additional ways to form sibling groups and facilitate communication; and
increase knowledge of, and provide for the special needs of particular sub-groups of bereaved siblings: those whose sibling died of homicide, suicide, accident or terrorist attack.
Newer intervention approaches have included:
Interventions that focus on developing ongoing networks of support within specific geographic, ethnic, or religious communities;
Interventions located within service organizations that treat the child’s terminal condition and can direct parents early in the bereavement process to appropriate services—e.g., hospitals, emergency services, the coroner’s offices, and schools;
Interventions that utilize intensive camp/retreat experiences or 1 day work shops with follow-up services in the community;
Combinations of professional and self-help leadership in groups; and
Novel uses of the Internet and technology to provide group information and on-line discussion groups. A recent qualitative analysis of an online perinatal bereavement group, not professionally led, identified themes of interpersonal connection, memorializing the child who died, and validation of the parent’s unique grief experiences. Such technologies can provide important opportunities for access to social support and education.
RESEARCH IN BEREAVEMENT
New intervention models have been developed for specific bereavement situations, some beginning during the terminal illness period [103, 104]. Evidence suggests that this time period offers an important opportunity for preparation and prevention of unnecessary bereavement distress after the death of a child as well as the death of a parent . Other variables that continue to be the focus of research include the role of symptoms of traumatic stress, particular types of child deaths such as suicide, homicide, and deaths from AIDS, gender differences in coping, marital distress and divorce, depressive symptoms, verbal disclosure, emotional expression in the face of social constraints, and the role and function of ongoing memories of and connection to the child who died [4, 105]. Additional research questions include the following:
What are relevant bereavement outcomes for sibling, parents, and the family as a whole?
What prevention opportunities occur during the child’s terminal illness?
What are the range of psychological symptoms including traumatic stress experienced by parents and siblings during a child’s terminal illness and after a child’s death and are they responsive to medical and psychosocial interventions?
Do current criteria for complicated grief in adults apply to bereaved parents?
Do symptoms and behaviors suggested for complicated or traumatic grief in children differentiate the grief experience of siblings?
Most studies of parents’ grief for a child who dies have relatively short-term outcome evaluations. Longer term prospective research could improve our understanding of delayed and complicated grief and associated risk and protective factors that occur over time.
How is child and adolescent functioning after the death of a sibling affected by family functioning and social support?
What are the range of risk and protective factors that affect differ-
ent outcomes such as the parent’s decision making about the child’s terminal treatment, timely information, and the use of psychosocial support services?
How do health professionals differ in their responses to parents during the child’s terminal illness from their responses to parents whose children are not terminally ill?
Does professional training and skill development in working with bereaved parents and siblings affect outcomes of the experience?
What are the barriers to recruitment of research samples in this area and how can they overcome?
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