Which emotional response are the parents most likely to experience immediately following the death of their infant?

Introduction

A seemingly healthy infant dies suddenly and unexpectedly. A parent or someone the parent trusted with their infant was nearby, but the moment of death went unwitnessed. The forensic process ensues, including parent and guardian interviews, a death scene investigation, and autopsy. But another highly consequential process also begins: the process through which the infant’s parents contend with their profound loss. As they seek an explanation, and the typically inconclusive results of the forensic process become known, they will experience intense emotions and a crisis of meaning. They will continue to face the complexities of coping with their loss for the rest of their lives. Medical relationships during involvement with sudden infant death syndrome (SIDS) begin and occur in a context of grief.

Medical and investigative interactions occur at the time of death, during the investigations, and as results are shared. Bereavement-related supportive services may be available; they may or may not meet the parents’ needs (a situation which is explored in more detail in Chapter 7). There is rarely a plan or anticipatory guidance provided for the future once the death investigation is concluded. The family’s usual medical care providers may not feel qualified to offer their assessment or advice, provided they even become aware of the challenges the family faces. All of these services and interactions will be influenced by the parents’ grief, just as their grief will be influenced by the interactions. We can improve our care in this area with an awareness of the parents’ emotional state and their needs. In the following, we present the state of knowledge about psychological coping following the loss of a young child and the process of grief that is seen.

Important Concepts

Grief is the emotional adaptation to loss and the way it is expressed. Those who interact with parents around the time of unexpected infant death would agree that the emotional state of the parents is extremely raw and intense. First moments in dealing with significant losses are predictably overwhelming but, from the perspective of grief research, the quality of grief in this setting underscores important concepts at the heart of the current theoretical understanding of grief.

Conceptually, grief is an attachment reaction. Attachment can be thought of in a behavioral sense as a naturally occurring system that protects individuals by discouraging prolonged separation from their primary attachment figure (1). The attachment bond between a parent and a child is considered the strongest human attachment bond (2). In the case of a young, dependent child, this is self-evident. The survival of a young child depends on the protection and nurturing of his or her parent. But the strength of this bond is bi-directional: a parent’s self-concept and self-worth are strongly tied to meeting their obligations to their child. This includes, at a baseline, protecting them from harm, but also providing for their future, a future they have imagined since becoming aware of their pregnancy. Their child’s safety and future is an extension of their identity. Death brings an end to the infant and the reality of that future, but not to the bond or the meaning embedded in it (3). Grief can be understood as an effort to maintain these bonds in the face of loss. In addition to the empirically based evidence that will be reviewed later, the innate process that seeks to restore these bonds has been understood through two important ways of conceptualization: stage models of grief and process models of grief.

Stage models of grief

Stage models of grief attempt to describe the changing emotional states and tasks that are commonly seen following death, as attempts are made to adapt and preserve the attachment bond. The work of Elizabeth Kübler-Ross (4) is a well-known example of a stage model, although her work’s primary focus was on how a person reckoned with their personal impending death. She described five stages a person goes through, following a significant loss: [1] denial and isolation; [2] anger; [3] bargaining; [4] depression; and [5] acceptance. The first four stages are negative conditions that are ultimately passed once a person learns to accept the loss. These negative stages can be seen from the perspective of frustrated attachment ties and the feelings that occur during efforts to reactivate them. The presence of these stages has been empirically demonstrated, although the population in question was made up of elderly, surviving life partners without pathological levels of grief (5). The current status of the Kübler-Ross stages is that they are regarded as descriptive and informative, but should not be taken as a strict sequence to be accomplished in some fixed period of time. Experience has found that people move back and forth between stages, retaining and revisiting feelings from “earlier” stages long after grief has “resolved”. The persistence of these stages has not been implicated as a key feature of pathological grief.

The inherent limitations to the stage conceptualization, particularly with its suggestion of a linear process, has been noted since stages of accommodation to loss were first proposed, as for example, can be found in Bowlby and Parkes’ four stages of normal adaptation to loss: [1] numbness; [2] yearning and searching; [3] disorganization and despair; and [4] reorganization (6). Similar to Kübler-Ross’s later proposal, this conceptualization remains relevant as another informative framework shedding light on the emotional states involved as a person strives to maintain a meaningful relationship (attachment) following loss, reconceiving their relationship with that person. While there may be a more typical sequence where certain feelings predominate, following a stereotypic sequence does not indicate healthier bereavement. It is also important to note that acceptance may not be the final, resolved state of a parents’ grief. It may not be reasonable to recognize that a parent must strive to maintain their attachment bond to their deceased infant, yet also expect them to accept their infant’s absence from the world or feel that other relationships can replace it. The idea of reorganization may better illuminate this stage of adaptation, where the loss is reconceived and incorporated into a satisfying but changed life.

Process models of grief

Important insights into the process through which this reconceiving of attachment occurs can be found in the Dual Process Model of Coping with Bereavement (7). The Dual Model brings attention to the way in which people accommodate to the absence of a significant figure while maintaining bonds, illustrating the adjustments necessary to keep the process sustained and yet tolerable. It highlights an oscillation between two kinds of adjustments involved in the coping process. Loss orientation refers to thoughts and feelings which are directed toward important elements of the loss. For example, remembering the sensations that were experienced while embracing their infant when he or she was alive is loss-oriented and generally creates intense emotions of yearning and pain. The fact that such experiences are no longer possible as they once were must be dealt with in order to be reconceived as tolerable remembrances of special aspects of their relationship.

Alternatively, restoration orientation involves the times when attention is diverted from what has been lost. Time may be spent apathetically on mundane tasks or in settings where memories of the deceased are not intrusive. Life occurs without pain and time goes on. A parent may feel guilty or disloyal to their child when they discover they are enjoying themselves, or that they have gone for a long period of time without noticing their sorrow, yet it is in this way that reorganization may occur. The dynamic of oscillating from loss orientation to restorative orientation is found in normal grief. Hindrances or imbalances in the oscillation suggest a more problematic process.

Normal Grief

Most grief is not pathological. Stage theories of adjustment describe an anticipated, acute experience of loss that is normal. It may be dramatic and can often involve negative emotions that are only considered normal in this context. Parents are stunned and dazed by their loss. There is a high level of emotional distress, especially intense sadness and yearning. Intrusive thoughts and dysphoria are to be expected. Acute grief involves affective, behavioral, and cognitive elements that are considered normal so long as they conform to cultural norms and do not persist (8). It may be interesting to note that in sudden infant death, the immediate expression of loss by parents has been found to be the same regardless of what the cause of death is ultimately determined to be (9).

Behavioral aspects of acute grief include social withdrawal, fatigue, irritability, sleep disturbance, and somatic complaints. These behavioral reactions may limit the ability of professionals to conduct an interpersonal assessment of the acutely bereaved. There are also cognitive consequences of significant loss that have an influence on our interactions with parents in the acute setting. An altered sense of reality and problems with memory and concentration are normal. Cognitive reaction time is significantly delayed (10) and there are diminished attention and lower scores in global cognitive performance (11). Normal grief involves preoccupation, lowered self-esteem, and self-reproach. Rumination — i.e. repetitive, self-focused thoughts and behaviors focused on negative emotions (“I’m so sad”) and the bereaved person’s difficult circumstances (“how can I live with this?”) — has been shown to be prevalent in bereaved parents (12).

While not everyone ruminates, those who exhibit higher levels of rumination regard it as a way to help solve the dilemmas their loss has occasioned. However, research has shown that they are less able to make sense of their loss. This is important because meaning making predicts grief severity (13). Parents who are better able to make sense of their child’s death have better post-loss adjustment. Tellingly, 45% of bereaved parents cannot make sense of their loss and 21% can find no benefits to their post-loss experiences (14, 15). Better grief outcomes rely on a parent’s ability to find meaning in their child’s life and their death (16).

In addition to behavioral and cognitive aspects, acute grief has affective dimensions. Depression, despair and dejection, anxiety, guilt, anhedonia, and isolation may be part of normal coping with regards to a loss (17). These are well-described and accepted parts of normal adjustment to significant loss, with an expectation that the intense presentation of these symptoms will resolve in a time-limited manner. Mourning is the culturally sanctioned manner that allows the symptoms to be experienced and not challenged, providing quarantine for the bereaved while they “recover”.

Informally, the affective dimensions of grief are sometimes spoken about as a kind of depression; alternatively, they may be spoken of in terms of psychic trauma and thus considered a variant of post-traumatic stress disorder (PTSD). But once one considers diagnostic categories of psychological pathology, this lack of precision becomes inaccurate. Pathological bereavement is increasingly understood in terms of prolonged grief disorder (PGD), now set for inclusion in ICD-11 (18, 19). Certain aspects of pathological grief, presented below, distinguish it from other psychiatric diagnoses. The intensity of PGD is related to the strength of the attachment bond, and whereas in depression the intensity is related to a withdrawal from attachment figures, in PTSD it is related to the enormity of the stressor event. PGD involves abnormal preoccupation with the deceased, but the preoccupation in depression is with low self-esteem and in PTSD with a sense of personal safety. Intrusions in PGD are positive remembrances that provoke yearning or emotional pain, whereas the intrusive thoughts in depression are self-referential and negative and in PTSD are marked by helplessness and fear (20). PGD has been shown to be a distinguishable syndrome by confirmatory factor analysis (21), distinct from grief-related depression (22), anxiety (23), major depressive disorder (24), or PTSD (19). People with disordered grief may also be clinically depressed or have diagnostic levels of post-traumatic stress, but pathological grief is a separate affective category that entails a different therapeutic approach.

Prolonged Grief Disorder

Although the dimensions of normal grief are significant, some bereaved persons experience more intense grief, which lasts longer than would be expected according to social norms and causes impairment in daily functioning. In these instances, the coping abilities of the bereaved leave them unable to adapt to their loss. The high levels of distress that are initially experienced do not abate, and the bereaved fail to achieve integrated grief. Prolonged grief disorder (PGD), also called complicated grief or persistent complex bereavement disorder, defines this pathological category of grief (19). Prolonged grief disorder affects 2-3% of the general population, with a pooled prevalence of 9.8% (25). Research establishing PGD initially focused on spousal loss later in life, which is the most common type of loss currently experienced, but now extends to many other populations and types of loss with consistent findings.

Prolonged grief disorder is a diagnosis used for bereaved persons who are abnormally affected (19). Its criteria require that the grief lasts for a period of greater than six months after a significant loss, along with clinically significant impairment in social, occupational, or other important areas of functioning. Separation distress must be present, manifest as yearning and physical or emotional suffering on daily basis or to a disabling degree. In addition, at least five cognitive, emotional, or behavioral symptoms must be present daily or to a disabling degree. These symptoms include role confusion or a diminished sense of self; difficulty accepting the loss; avoidance of reminders of the deceased; loss of trust; anger; difficulty “moving on”; emotional numbness; feeling that life is empty, meaningless, or unfulfilling; feeling stunned, dazed, or shocked by the loss.

Research to judge the significance of PGD in bereaved parents is plagued by inconsistent methodologies and varied indicators of grief outcomes. Among the populations studied, however, it would be fair to conclude that the risk for complex bereavement following the death of a child is greater than twice that reported in other forms of loss (26) and, in certain situations, may approach a sevenfold increase (27).

Is Parental Grief Distinct?

Many aspects of the death of a young child predict greater difficulty in grief for parents of dependent children who have died. The loss of a child is considered among the worst experiences when rated in life event scales (28). The loss is against the normal order of things (29). As stated above, insofar as grief reflects attachment, parental grief is a special case. The loss is hostile to defining elements of the close attachment relationship: to the feelings, hopes, and meanings projected onto the child by the parents; to the protective obligations of a parent; and to the closeness and intensity of the parent-child relationship. The loss is hostile to the assumed and socially assigned responsibilities of a parents. The loss attacks the very premise of all that being a parent incorporates.

As well as the psychological aspects of the bereavement adjustment, the death of a young child is associated with worsened physical health and mortality in parents. Research indicates that bereavement following the death of a young child is accompanied by a significant increase in mortality, physical health problems, and mental health difficulties in bereaved parents. Mortality from both natural and unnatural causes remains elevated for up to 18 years in mothers, with a nearly fourfold increased risk of death by unnatural causes in the three months following the death (30, 31). Fathers have an increased rate of death by unnatural causes for three years, and unexpected death leads to further increased risk (31). Bereaved parents have more health problems (32), including increased cardiovascular-related disease (33), more diagnoses of chronic medical conditions, and a greater than 10-fold rate of health-related work absence (34).

Research has shown increased levels of unresolved, complicated, or prolonged grief in parents of children dying from virtually any cause. Poorer outcomes in bereaved parents, and features that are consistent with PGD, are seen in much of the parental grief literature. Parental grief after the loss of a child is well documented to be more intense, complicated, and long-lasting, with huge fluctuations over time in comparison to grief related to any other type of loss (35). This view is remarkably unchallenged. Loss-related risk factors that have been shown to complicate bereavement and adjustment include the nature of the death (13); the bereaved person’s relationship with the deceased, with more grief intensity experienced by parents who have lost a child than by adults who have lost either spouses or parents; and the existence of unresolved issues or an inability to find meaning. Personal risk factors include pre-existing psychological morbidity and vulnerabilities (36), gender (37), social context, and role (38); including the role as a parent and the role as a competent adult. Research specific to parental loss points to more severe grief outcomes associated with the death of a younger child (39), parent-child kinship (40), a more dependent relationship (31), and being a mother (41). Sudden death in the home also carries increased risk (41), as does a lack of preparation for death (42). Parents whose only child has died experience greater symptoms (43). Parental grief may not be an entirely distinct experience but evidence is consistent that it is more severe. In bereaved parents with prolonged grief, 80% wished to die at some point following the loss (44).

Considerations Particular to SIDS

Research on parental bereavement adjustment following SIDS has become much less common in the “Back to Sleep” era. Whether due to the decreased incidence of SIDS, a bias against the legitimacy of the SIDS diagnosis, or an accusatory environment in these cases, very few of the more commonly used grief indicator measures have been used to study grief following SIDS. The grief in these parents, however, is extremely severe in whatever population it has been studied. Research on parental grief following a SIDS death has shed light on the greater psychological burdens for parents after the sudden death of a child (45), when approximately two-thirds of parents whose children died from SIDS, suicide, or accidents have pathological levels of grief 18 months following the death. Parents whose infants died from SIDS experience higher levels of isolation (46), with feelings of self-blame and guilt increasing in the months following the infant’s death (47). Research samples consistently show high levels of prolonged grief-related symptoms and extraordinary amounts of self-blame, especially in mothers (48).

Next Steps

In many ways, insights gained through better understanding the severe form of grief observed in parents following their child’s death from SIDS have great potential to increase the understanding of important areas of investigation in bereavement research. This population of parents has the power to inform important questions in PGD and its treatment. Their high levels of grief-related symptoms and pathology distinguish these parents as a “boundary population”. Their experience may not be typical, or especially common, in comparison to the prevalence of bereavement after the death of a life partner, yet the severity of their symptoms provides important insights into the diagnostic categorization of pathological grief. Their symptom severity raises important questions about the specificity of criteria for prolonged grief disorder, namely whether a condition should be labeled as pathological when it is a highly prevalent outcome of an event with relatively high incidence. As the disorder becomes established, it is valid to consider whether parental grief requires a modified set of diagnostic criteria, in order to identify the subpopulation of bereaved parents with the most heightened risk for pathology.

Bereavement support is generally regarded as helpful in parental grief, but its outcomes are relatively unstudied. Some promising cognitive behavioral approaches to grief support rely on motivating the bereaved with activities and structure, based upon the view that quotidian tasks act as “hidden regulators” of behavior (49). The pervasive isolation and self-blame seen in these parents after SIDS contributes to their bereavement outcomes, in part, by removing many of those regulators from people’s lives. Interventions aimed at invigorating daily structure and activities may demonstrate therapeutic efficacy.

Conclusions

Mortality from SIDS/sudden and unexpected infant death remains significant at this unique time in human history, a time when the death of a child is an uncommon event, and, indeed, when a typical death is not the death of a child (50). As long as these deaths occur, there will be an important population of bereaved parents with significant needs affecting their own health and productivity, as well as the health of their young families. Their intense feelings of responsibility and failure in their role as parent to their infant, provoked by their loss, are rooted in the same attachment bonds that would strengthen their abilities as parents had the death not occurred.

A child’s death from SIDS is a profound loss. Parental grief in its aftermath is severe, with physical, behavioral, cognitive, and emotional dimensions. This grief influences every medical encounter related to the death, from information gathering to the sharing of conclusions. Most parents’ difficulties are under-recognized and unaddressed, as they struggle under the weight of adjusting to a loss from which they will not fully recover. There is an important role for research and support in this area.

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