The Grief Of The Parents: A Lifetime Journey
Children are not supposed to die...Parents expect to see their children grow and mature. Ultimately, parents expect to die and leave their children behind...This is the natural course of life events, the life cycle continuing as it should. The loss of a child is the loss of innocence, the death of the most vulnerable and dependent. The death of a child signifies the loss of the future, of hopes and dreams, of new strength, and of perfection. - Arnold and Gemma 1994, iv, 9, 39
When a parent dies, you lose your past; when a child dies, you lose your future. - Anonymous
This space is with me all the time it seems. Sometimes the empty space is so real I can almost touch it. I can almost see it. It gets so big sometimes that I can't see anything else. - Arnold and Gemma 1983, 56
A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. But...there is no word for a parent who loses a child, that's how awful the loss is! - Neugeboren 1976, 154
The theme of parental mourning has been a universal one throughout the centuries. In the literature on bereavement, writers repeat certain themes, thoughts, and reflections; they talk of the powerful and often conflicting emotions involved in "the pain of grief and the spiral of mourning; [they refer to] the heartbreak at the heart of things...grief's contradictions"; they speak of parents devastated by grief (Moffat 1992, xxiii).
It is frequently said that the grief of bereaved parents is the most intense grief known. When a child dies, parents feel that a part of them has died, that a vital and core part of them has been ripped away. Bereaved parents indeed do feel that the death of their child is "the ultimate deprivation" (Arnold and Gemma 1994, 40). The grief caused by their child's death is not only painful but profoundly disorienting-children are not supposed to die. These parents are forced to confront an extremely painful and stressful paradox; they are faced with a situation in which they must deal both with the grief caused by their child's death and with their inherent need to continue to live their own lives as fully as possible. Thus, bereaved parents must deal with the contradictory burden of wanting to be free of this overwhelming pain and yet needing it as a reminder of the child who died.
Bereaved parents continue to be parents of the child who died. They will always feel the empty place in their hearts caused by the child's death; they were, and always will be, the loving father and mother of that child. Yet, these parents have to accept that they will never be able to live their lives with or share their love openly with the child. So they must find ways to hold on to the memories. Many bereaved parents come to learn that "memories are the precious gifts of the heart...[that they need] these memories and whispers, to help create a sense of inner peace, a closeness" (Wisconsin Perspectives Newsletter, Spring 1989, 1).
Parental grief is boundless. It touches every aspect of [a] parent's being...When a baby dies, parents grieve for the rest of their lives. Their grief becomes part of them...As time passes, parents come to appreciate that grief is [their] link to the child, [their] grief keeps [them] connected to the child. - ARNOLD AND GEMMA, IN CORR ET AL. 1996, 50-51
Sociologists and psychologists describe parental grief as complex and multilayered and agree that the death of a child is an incredibly traumatic event leaving parents with overwhelming emotional needs. They also agree that this grief must be acknowledged and felt in its intensity. These experts repeatedly state that dealing with parental grief involves deep pain and ongoing work as the parents attempt to continue their "journey down the lonely road of grief" (Wisconsin Perspectives Newsletter, February 1997, 1).
Grieving parents say that their grief is a lifelong process, a long and painful process..."a process in which [they] try to take and keep some meaning from the loss and life without the [child]" (Arnold and Gemma 1983, 57). After a child's death, parents embark on a long, sad journey that can be very frightening and extremely lonely- a journey that never really ends. The hope and desire that healing will come eventually is an intense and persistent one for grieving parents.
The child who died is considered a gift to the parents and family, and they are forced to give up that gift. Yet, as parents, they also strive to let their child's life, no matter how short, be seen as a gift to others. These parents seek to find ways to continue to love, honor, and value the lives of their children and continue to make the child's presence known and felt in the lives of family and friends. Bereaved parents often try to live their lives more fully and generously because of this painful experience.
To those outside the family, the composition of the family may seem to change when a child dies. A sibling may become an only child; a younger child may become the oldest or the only child; the middle child may no longer have that title; or the parents may never be able to, or perhaps may choose not to, have another child. Nonetheless, the birth order of the child who died is fixed permanently in the minds and hearts of the parents. Nothing can change the fact that this child is considered a part of the family forever, and the void in the family constellation created by the child's death also remains forever.
In a newsletter for bereaved parents, one mother wrote, "It feels like a branch from our family tree has been torn off." Another grieving mother continues, "I felt that way too. A small branch, one whose presence completed us, had been ripped from our family and left a large wound. Without it, we were lopsided and off balance. When subsequent children are born, [they] do not replace the fallen branch, but create a new limb all their own" (Wisconsin Perspectives Newsletter, December 1996, 1).
Common And Individual Characteristics Of Parental Grief
Death is an experience that is common to all mankind, an experience that touches all members of the human family. Death transcends all cultures and beliefs; there is both commonality and individuality in the grief experience. When a loved one dies, each person reacts differently. A child's death, however, is such a wrenching event that all affected by it express sadness and dismay and are painfully shaken. Such a devastating loss exacts an emotional as well as a physical toll on the parents and family.
Bereavement specialists point to the commonalities of parental grief that may include an overwhelming sense of its magnitude, a sense that the pain will last forever, a sense that the grief is etched into one's very being. They explain that it is also important for these parents to express their anger outwardly so that it will not turn inward and possibly become a destructive force in the future. These specialists say that although there are many commonalities in parental grief, individual reactions often vary and that the same person may even experience contradictory reactions. They also say that the two responses experienced most commonly by bereaved parents are a baffling sense of disorientation and a deep conviction that they must never let go of the grief.
But there are also many unique ways that bereaved parents express their grief. These individual parental responses are influenced by many factors including the person's life experiences, coping skills, personality, age, gender, family and cultural background, support and/or belief systems, and even the death or the type of death that occurred.
Parental grief is boundless. It touches every aspect of the parent's being...The range of expression of parental grief is wide...Some parents will express tears and hysteria openly. Others will silence these expressions and grieve inwardly...Despite the volumes of work on grief, the experience of grief seems to defy description... Definitions touch the fringes of grief but do not embrace its totality or reach its core...Grief is a complicated, evolving human process. Grief is a binding experience; its universality binds sufferers together. More is shared than is different. - ARNOLD AND GEMMA, IN CORR ET AL. 1991, 50-52, 55
As part of the grieving process, bereaved parents experience ups and downs and a literal roller coaster of emotions. For these parents, a personal history includes a past with the child and a present and future without the child. For most grieving parents, it is vitally important to verbalize the pain, to talk about what happened, to ask questions, and puzzle aloud, sometimes over and over.
It is the nature of grief that feelings, thoughts, and emotions need to be processed and that those in grief must look into their hearts and souls and try to heal from within. Each does this in his/her own way. "Grieving parents are survivors" (Rando 1986, 176), and each survivor travels this lonely and painful road in a way each maps out. In traveling this road, parents often respond differently, learn to live with their grief separately, and express their sadness uniquely. Grieving parents can and often do feel alone, disconnected, and alienated. They need to know that there are many ways to grieve; there is no timetable for grief's duration; there are no rules, boundaries, or protocols for grieving.
Moreover, those who seek to comfort grieving parents need to recognize and understand the complexities of the parents' emotions and should avoid relying on preconceived ideas about the way a couple is supposed to grieve if their child dies. Reactions of grieving parents may seem overly intense, self-absorbing, contradictory, or even puzzling. For bereaved parents, the death of a child is such an overwhelming event that their responses may often be baffling not only to others but to themselves as well.
The sorrow for the dead is the only sorrow from which we refuse to be divorced. Every other wound we seek to heal, every other affliction to forget; but this wound we consider it a duty to keep open; this affliction we cherish and brood over in solitude. - WASHINGTON IRVING, THE SKETCH BOOK , IN MOFFAT 1992, 270
Parental Grief And A SIDS Death
The impact of a Sudden Infant Death Syndrome (SIDS) death presents unique grieving factors and raises painful psychological issues for the parents and family as well as those who love, care for, and counsel them. SIDS parents must deal with a baby's death that is unexpected and unexplained, a death that cannot be predicted or prevented, an infant death so sudden that it leaves no time for preparation or goodbyes, and no period of anticipatory grief. In many cases, parents of SIDS babies are very young and are confronted with grief for the first time.
SIDS often occurs at home, forcing parents and siblings or other children to witness a terrible tragedy and possibly scenes of intense confusion. In some cases, the parents themselves are the ones who find the child dead and they must always live with that memory. In other cases, the parents may feel overwhelming guilt or anger if the death occurred while the child was in daycare. They may feel that the baby might not have died if they had been caring for it. "All too frequently, a SIDS loss is not socially validated in the same way other deaths are. Others often fail to recognize that, despite the brevity of the child's life, the family's attachment to that child is strong and deep and has been present in various ways since the knowledge of conception" (Rando 1986,167).
SIDS parents must take a journey that "involves a trek through grief-a strange and hostile territory that no one would ever pass through if given the choice" (Horchler and Morris 1994, 17). SIDS parents often retain strong feelings of guilt and sometimes a sense of responsibility for what happened even though they've been told there was nothing they could have done to prevent the death. Sometimes, parents are the victims of undeserved suspicion from law enforcement personnel, even family members, neighbors, or friends. In the most difficult situations, the baby's death may cause parents to be subjected to grueling investigations and hostile questions; they may even face accusations of child abuse.
Probably the most stressful and anxiety-provoking act in human existence is the separation of a woman from her newborn infant. The response to this, which humans share with most of the animal kingdom, is an overwhelming combination of panic, rage, and distress. - RUSKIN, IN HORCHLER AND MORRIS 1994,16
SIDS parents, relatives, daycare providers, health care professionals, and other adults feel helpless in trying to explain the unexplainable to other young children who may have been present at the time of the baby's death. It is especially difficult for children to understand why a baby died when it didn't appear to be sick. Also, in some cases parents are required to explain SIDS to adults who are misinformed or know nothing about the syndrome.
Any infant or early childhood death forces adults to think about their own vulnerability, but a SIDS death also brings with it total mystery, an absence of answers, and a frightening loss of control. The chaos surrounding a SIDS death leaves most parents feeling that nothing in life is predictable; a SIDS death throws everything off balance.
As is the case in most traumatic experiences, SIDS parents are likely to continually replay the events surrounding the death over and over in their minds and in their conversations. Whether the parents put a seemingly healthy baby down for a nap or for the night or took the child to the daycare provider, they assumed their child was well and in a protected environment. They felt secure; their family and their world were in order. Then suddenly, everything has been turned upside down. Even though there may be attempts to reassure the parents that the baby didn't appear to suffer, frequently they are not convinced. They repeatedly ask, "How can a perfectly healthy baby die?" Often these parents are told that SIDS doesn't carry a high hereditary risk; yet fears about having subsequent children haunt them.
[The grief SIDS parents feel is like a]...continuous, crashing waterfall of pain...SIDS is a forced separation that will last forever. In the beginning, survivors are so shocked that their bodies and minds cannot even begin to comprehend all that has been lost...Shock and disbelief overtake most survivors so they can only vaguely feel their own empty arms and the rage that will eventually come full force. ...SIDS parents attempt to transcend the awfulness of [the baby's] death by choosing to celebrate the dead infant's life while not denying the physical finality of the death...[After a SIDS death, parents attempt] to travel the long road of grief to a place of rest and hope...SIDS parents must [try to] actively seek peace and joy in life-even in the face of a grief that will never end... - HORCHLER AND MORRIS 1994, 2, 16, 17, 248
SIDS parents also are very often plagued by "if only's" that they are never able to resolve. They mentally replay such thoughts as: "If only I hadn't put the child down for a nap when I did." "If only I had checked on the baby sooner." "If only I had not returned to work so soon." "If only I had taken the baby to the doctor with that slight cold."
SIDS parents also need to know the value and importance of obtaining reliable information. They need to have access to professional support; and they need to be aware of the great benefits other parents have gained from attending support groups and sharing their experience or by expressing their thoughts and feelings in writing.
Moreover, bereaved SIDS parents often find that health care professionals are as perplexed as they are and cannot provide them with any explanation for the death. Although most health professionals know about SIDS, not all can provide parents with the information they so anxiously seek. They are unable to provide answers to questions such as: "Did my baby suffer?" "What are the possible causes of SIDS?" "What can I do to prevent another child from dying of SIDS?" "Are there symptoms I should have known about that could have prevented the death?"
In the case of some SIDS deaths, the autopsy findings may still leave unanswered questions, or the child's death may be attributed to causes that are problematic for the parents. Some families are subjected to agonizing doubts and delays from the legal system about the exact cause of death. The absence of standardized procedures for determining the cause of unexpected infant deaths brings added pain and frustration to parents already in the midst of a harrowing nightmare. Thus, SIDS parents are often denied the sense of closure that comes from knowing the exact cause of their baby's death.
A single SIDS death can have a ripple effect on as many as 100 people who came in contact with the baby or the family. "The expanded circle of concern" (Corr et al. 1991, 43) can include parents, extended family, neighbors, coworkers, child care providers, health care and emergency personnel, clergy, funeral directors, and other care providers.
SIDS parents and family members need to be around people who will offer them support in a nonjudgmental way; they need to know that some things in their lives are permanent and there are certain people on whom they can truly depend. Other family members, friends, or professionals can provide this sense of dependability and assurance by allowing parents both permission and ways to express their grief and talk about their confusion. SIDS parents need to talk and they need someone to listen-really listen-even if they tell their story, express their doubts and fears, and ask the same questions repeatedly. What SIDS and other bereaved parents are really saying is, "Let me tell you about my pain; let me talk about my child with you; please do call my child by name; please do not let my child be forgotten."
Friends and family members should try to do all they can to show their concern and help the parents in keeping alive memories of their baby. For most SIDS parents, it is also reassuring for others to try to mention special things they noticed about the baby and to remember the child's birthday or the anniversary of the death. By extending these personal and sensitive gestures, loving and concerned relatives, friends, and caregivers can become a source of reassurance and comfort for the grieving parents.
Some SIDS babies are so young when they die that family members and friends never had a chance to welcome them. They may have missed sharing the parents' excitement over the birth and affirming the child's existence. Many individuals do not understand the depth of parental attachment to a very young child. Bereaved SIDS parents should not be made to feel that others don't want to hear them, that others won't permit them to openly grieve. The parents of SIDS babies want their child's short life to matter not only to them, but to their families and friends, to the others in their "circle of concern," to the world.
The dynamics of a SIDS loss [mean]...there is no chance to say goodbye to the infant or to absorb the reality of the loss gradually over time; the unexpected loss so overwhelms people that it reduces their functioning and compromises their recovery...The physical and emotional shock of the infant's death undermines the [parents'] capacity for regaining a feeling of security; the SIDS loss evokes particularly problematic grief reactions, such as the abrupt severing of the mother and father infant bond. - RANDO 1986, 166
Fathers - The Forgotten Grievers
The death of a child is probably the most traumatic and devastating experience a couple can face. Although both mothers and fathers grieve deeply when such a tragedy occurs, they grieve differently, and it is most important that each partner give the other permission to grieve as he/she needs. This may be the greatest gift each can give the other.
Parental grief is strongly influenced by the nature of the bond between child and parent. Bereavement specialists actually speak of "incongruent grieving" patterns in mothers and fathers and of differences in the timing and intensity of the parental bond for mothers and fathers.
For the mother, the bond is usually more immediate and demonstrable, more intense at the beginning of life, more emotionally and physically intimate. The mother's bond with the baby is usually tightly forged from the moment of conception and continues through the pregnancy, the birth, and the nursing process. The maternal bond involves the present and the baby's immediate needs, while the father's bond with the baby more often concerns the future and dreams and expectations for the child. Today, however, many fathers are forging earlier and more intense prenatal bonds with their babies. Fathers also are often present in the delivery room for the birth. Some fathers become direct caregivers of the newborn, developing early and close bonds with their infants. Yet, still in many cases, "the father's emotional investment in parenting tends to occur later and less intensely than the mother's. This has implications for the way parents grieve" (Cordell and Thomas 1990, 75).
When is it my turn to cry? I'm not sure society or my upbringing will allow me a time to really cry, unafraid of the reaction and repercussion that might follow. I must be strong, I must support my wife because I am a man. I must be the cornerstone of our family because society says so, my family says so, and, until I can reverse my learned nature, I say so. - A FATHER, IN DEFRAIN ET AL. 1991, 112
In spite of the trend towards earlier bonding between fathers and babies, the influence of cultural expectations about men and grief persists and is powerful. Typically, the societal view of parental loss is not the same for the father as the mother. Most of the literature on parental bereavement still tends to focus on the mother's grief. Often, men are not acknowledged as experiencing grief; or more importantly, men are not taught that it's necessary to grieve and are discouraged from demonstrating signs of grief openly. Bereaved fathers frequently feel that they are the forgotten mourners and are often referred to as "second class grievers" (Horchler and Morris 1994, 72).
Fathers are expected to be strong for their partners, to be the "rock" in the family. All too often fathers are considered to be the ones who should attend to the practical but not the emotional aspects surrounding the death; they are expected to be the ones who should not let emotions show or tears fall outwardly, the ones who will not and should not fall apart. Men are often asked how their wives are doing, but not asked how they are doing.
Such expectations place an unmanageable burden on men and deprive them of their rightful and urgent need to grieve. This need will surface eventually if it is not expressed. It is not unusual for grieving fathers to feel overwhelmed, ignored, isolated, and abandoned as they try to continue to be caregivers and breadwinners for their families while their hearts are breaking. "Fathers' feelings [often] stay hidden under layers of responsibility and grim determination" (Staudacher 1991, 124).
Bereaved fathers often say that such strong emotions are very difficult to contain after their child's death. Fathers often fear that they will erupt like volcanoes if they allow themselves to release these feelings and so, too often, fathers try to bury their pain with the child who died.
It is most important that a father's grief be verbalized and understood by his partner, other family members, professionals, coworkers, friends, and by anyone who will listen. Fathers need to try to free themselves of stereotypes and societal expectations about men and grief; they must be able to tell others that their grief is all they have from their child's brief life. Fathers repeatedly say that for their own peace of mind, they (and those who care about them) need to move away from this mind set and allow them to grieve as they are entitled.
In too many instances, fathers' responses to infant loss tend to coincide with how they believe they should act as men, rather than how they need to act to confront and resolve [their own] grief. - CORDELL AND THOMAS 1990, 75
The Impact Of Grief In Special Parenting Situations
The tragedy of a child's death brings profound pain to all affected, and it presents incredibly difficult and unusual problems for grieving parents. For some parents, the effects of such a complicated and devastating tragedy can be further compounded when the death occurs in what are already trying family situations. There are some parents for whom there is no established "circle of concern"; there are some parents for whom there is no safety net; there are some parenting situations that are outside the domain of the typical support network; and there are some parents who choose to reject this network for their own reasons.
A child's death may present unique dilemmas for:
- Single parents who are often self-supporting and may be more isolated and ignored
- Unmarried parents who may already have experienced the disfavor of family and others
- Teenage parents whose grief is often not validated because of their situation or their youth
- Parents in stressful financial situations whose struggle to satisfy their most basic needs may cause them to stifle or ignore their need to grieve and for whom loss is a constantly repeated theme
- Divorced parents and parents in blended or nontraditional families who may require unique responses or resources
- Step-parents whose grief may not be understood or appreciated
- Adoptive parents who may be expected to grieve less than birth parents because their "bond" with the child is perceived to be less intense n Foster parents who are not thought to have the same "right" to grieve as birth parents
- Parents who experience the death of the only child they may ever have and who also grieve for the loss of their parenting role
- Parents losing a child who is one in a multiple birth and who are faced with the double task of saying "goodbye to the baby who has died and yet...still loving and caring for the baby who is living" (Hosford 1994, 1)
- Parents who are removed or estranged from typical and traditional support systems
- Parents whose language, cultural traditions, and/or beliefs are largely unrecognized or misunderstood by the society
- Parents in homeless shelters, prisons, jails, or other institutions whose needs require unique consideration and creative responses
- Parents with substance abuse problems whose child may have faced medical and/or developmental problems and who often must deal with guilt and other complex and overwhelming problems when a child dies.
When a child dies, inevitably there will be additional factors that will impinge on the parent's grief experience. Some of these will be negative... [and] sometimes, these factors will be positive. - RANDO 1986, 31
All of the grieving parents identified above as well as parents in many other situations may find their grief unusually complicated. They may discover the responses of others to be less concerned and may find support networks less readily available. These parents may not receive the same validation as parents in traditional nuclear families, and the needs and wishes of parents in these unique and complex situations may sometimes be ignored or misunderstood. Parental experiences, coping strategies, and cultural differences vary widely. At the same time, these parents may not have the same access to, need for, or reliance on peer or other support groups. Obtaining transportation or babysitters so they can attend meetings may be an impossibility for some parents. Still others may reject such support networks and depend solely on family, neighborhood, or church networks as the best support system for them. Parental bereavement support groups are not for everyone.
All of the parents exemplified here find themselves in special situations affecting their personal grief experience, how others react to their grief, and the type of support and/or intervention needed to help them resolve their grief. However, these parents are the fathers and mothers of the child who died; they are the ones who have nurtured, cared for, and loved that child. The sense of absolute emptiness, the lack of wholeness, and the feeling of diminishment after the death of a child are felt by all parents, regardless of marital status; age; language; financial or social circumstances; biological relation to the child; or cultural, racial, or religious background. Despite the differences among these groups in their responses and needs, all have one major need in common-their grief is intense and must be acknowledged.
There is no relationship like that of parent and child. It is unique and special...The bond between parent and child is so powerful that its strength endures time, distance, and strife. No loss is as significant as the loss of a child...On the death of a child, a parent feels less than whole. - ARNOLD AND GEMMA 1994, 25-27
From One Grieving Parent To Another
You will always grieve to some extent for your lost child. You will always remember your baby and wish beyond wishes that you could smell her smell or hold his weight in your arms. But as time goes on, this wishing will no longer deplete you of the will to live your own life. - HORCHLER AND MORRIS 1994, 158
- Parental grief is overwhelming; there is nothing that can prepare a parent for its enormity or devastation; parental grief never ends but only changes in intensity and manner of expression; parental grief affects the head, the heart, and the spirit.
- For parents, the death of a child means coming to terms with untold emptiness and deep emotional hurt. Immediately after the death, some parents may even find it impossible to express grief at all as many experience a period of shock and numbness.
- All newly bereaved parents must find ways to get through, not over, their grief-to go on with their lives. Each is forced to continue life's journey in an individual manner.
- Parental bereavement often brings with it a sense of despair, a sense that life is not worth living, a sense of disarray and of utter and complete confusion. At times, the parent's pain may seem so severe and his/her energy and desire to live so lacking that there is uncertainty about survival. Some bereaved parents feel that it is not right for them to live when their child has died. Others feel that they have failed at parenting and somehow they should have found a way to keep the child from dying.
- Grieving parents often have to adopt what one parent called a "new world view" (Wisconsin Perspectives Newsletter, December 1996, 7). Each parent must almost become a new and different person.
- Grieving parents should learn to be compassionate, gentle, and patient with themselves and each other. Grief is an emotionally devastating experience; grief is work and demands much patience, understanding, effort, and energy.
- Parental grief can and often does involve a vast array of conflicting emotions and responses including shock and numbness, intense sadness and pain, depression, and often feelings of total confusion and disorganization. Sometimes, parents may not even seem sure of who they are and may feel as if they have lost an integral part of their very being. At other times, parents may feel that what happened was a myth or an illusion or that they were having a nightmare.
- Typical parental reactions to a child's death often involve emotional and physical symptoms such as inability to sleep or a desire to sleep all the time, mood swings, exhaustion, extreme anxiety, headaches, or inability to concentrate. Grieving parents experience emotional and physical peaks and valleys. They may think life finally seems on an even keel and that they are learning to cope when periods of intense sadness overwhelm them, perhaps with even more force. (Experiencing any or all of these reactions does not mean permanent loss of control or inability to recover and are usually part of the grief process.)
- The death of a child can and often does affect not only personal health but sometimes the marriage, the entire family unit, other relationships, and even plans and goals for the future.
- Grieving parents need to know how important it is to express their pain to someone who will understand and acknowledge what they are feeling and saying. They should be honest with themselves and others about how they feel. These parents should allow themselves to cry, be angry, and complain. They need to admit they are overwhelmed, distracted, and unable to focus or concentrate. They may even need to admit to themselves and others that they might show physical and/or emotional symptoms that they don't want or can't even understand.
When are you ready to live again? There is no list of events or anniversaries to check off. In fact, you are likely to begin living again before you realize you are doing it. You may catch yourself laughing. You may pick up a book for recreational reading again. You may start playing lighter, happier music. When you do make these steps toward living again, you are likely to feel guilty at first. 'What right have I, you may ask yourself, to be happy when my child is dead?' And yet something inside feels as though you are being nudged in this positive direction. You may even have the sense that this nudge is from your child, or at least a feeling that your child approves of it. - HORCHLER AND MORRIS 1994, 158
- Each bereaved parent must be allowed to mourn in his/her own way and time frame. Each person's grief is unique, even that of family members facing the same loss. Bereaved parents shouldn't expect or try to follow a specific or prescribed pattern for grief or worry if they seem out of synchrony with their partner or other grieving parents.
- Bereaved parents need to know that others may minimize or misunderstand their grief. Many don't understand the power, depth, intensity, or duration of parental grief, especially after the death of a very young child. In some instances, bereaved parents are even ignored because some individuals are not able to deal with the tragedy. They find the thought of a child's death too hard, too Inexplicable, or too threatening. Many simply don't know what to say or do and so don't say or do anything.
- Most grieving parents experience great pain and distress deciding what to do with their child's belongings. Parents need to under-stand that this task will be most difficult and that different parents make different decisions. They should be encouraged to hold onto any experiences, memories, or mementoes they have of the child and find ways to keep and treasure them. These memories and mementoes-their legacy from the short time they shared with this very special person- will be affirming and restorative in the future.
- Most grieving parents also experience considerable pain on special occasions, such as birthdays, holidays, or the anniversary of the child's death. Parents will need to find ways to cope with these events and should do what feels right for them, not what others think they should do.
- Many bereaved parents find solace in their religion. Not only will these religious beliefs significantly alter the meaning that the parents give to life, death, and life after death, they will also affect their grief response. Grieving parents with a religious background should be encouraged to express these beliefs if this is helpful. Some grieving parents without a formal or organized religious background may maintain a spirituality or a personal faith that is also a part of their lives and that gives them comfort. They, too, should be encouraged to express these feelings. Seeking spiritual comfort in a time of grief does not mean repressing the grief. (It is important, however, that others offering support to grieving parents should not try to dismiss or diminish their grief by using religious or other platitudes or by forcing religion on parents who are uncomfortable with a particular belief system.)
Bereaved parents will recover and reach a place of rest and hope... [They] will never forget [their child], but rather will find ways to keep [the child] a cherished part of [their] inner selves forever. - HORCHLER AND MORRIS 1994, XIX
- Many grieving parents also find comfort in rituals. Funerals or memorial services have served many parents as beautiful and meaningful ways of saying goodbye, providing a sense of closure after the child's death. For others, sending announcement cards about the baby's death, writing poems, keeping journals or writing down personal reflections or prayers, or volunteering with a parental bereavement group become ways to remember and honor the child who died.
- Grief is the natural response to any loss. Parents need to be reminded how important it is to process all feelings, thoughts, and emotions in resolving grief. Bereaved parents must look within and be prepared to deal with the past and present. They need to talk about their loss, and the loss must be acknowledged by others. They need to tell others about what happened to their child; they need to talk out and through their thoughts and feelings from the heart, not just from the head. Healing for bereaved parents can begin to occur by acknowledging and sharing their grief.
- Probably the most important step for parents in their grief journey is to allow themselves to heal. Parents need to come to understand that healing doesn't mean forgetting. They need to be good to themselves and absolve themselves from guilt. They should not be afraid to let grief loosen its grip on them when the time comes. Easing away from intense grief may sometimes cause pain, fear, and guilt for a while, but eventually, it usually allows parents to come to a new and more peaceful place in their journey. Allowing grief's place to become a lesser one does not mean abandoning the child who died.
In the end parents must heal themselves. It was their baby; it is their loss; it is their grief. They need to gain closure, to experience release, to look to their new future. - NICHOLS, IN RANDO 1986, 156
Some Thoughts From Grieving Parents
- Bereaved parents face a devastating and difficult journey; expressing grief is the normal response to such a loss; unexpressed grief can be devastating and debilitating.
- An intense parental attachment has been formed between parent and child no matter how young the child is at the time of death. Others need to try and understand the intensity of this attachment, the depth of the parents' grief, and the magnitude of their sorrow.
- Grief is exhausting and demanding work. Grief is also a process, not a single timed event. Bereaved parents appear to exhibit different reactions at varying points in their grief and to grieve differently even when they belong to the same family.
- There are no easy ways to deal with grief, there is no one correct way to grieve, and no set time frame for grieving parents.
- Caregivers need to know there are no exact or right words or expressions when comforting grieving parents. Neither should caregivers try to take away the parents' grief. Most of all, they should try to speak from the heart and show their care and concern. Sometimes it may seem that they say the wrong thing.
- The caregiver should try again, using different words, or admit confusion about what to say. The pain must be walked through by the bereaved parent and also by those who seek to help them.
There is a need to talk, without trying to give reasons. No reason is going to be acceptable when you hurt so much. A hug, the touch of a hand, expressions of concern, a willing listener were and still are the things that have helped the most...The people who [were] the greatest help... [were] not judgmental. It's most helpful when people understand that [what is needed] is to talk about it and that this is part of the grief process. - DEFRAIN ET AL. 1991, 158, 163
- Bereaved parents need to find ways to keep the memories alive and also find ways to create memories. Memories are all they have left from the child who died. Bereaved parents often need to establish unique rituals to memorialize the child and in some cases, others may find this process puzzling.Grieving parents need to be allowed to set the tone and direct others about how to help them in their grief. Parents need validation as they attempt the process of healing.
- Friends and caregivers should try to help grieving parents express their grief. They should try to be a safe place for them-a place where they can be themselves, where they can be confused, where they can express their pain, sadness, and even anger. Those who care should grieve and mourn with the parents; they must also be willing to listen.
- In most cases, bereaved parents don't want to be avoided, but they may be hesitant to let others know they are needed. Usually, they are most grateful for the kind expressions and gestures of love and support.
- Bereaved parents need to know that the support of family, friends, and others will continue after the commotion and busy days immediately following the death and funeral. Their grief continues forever. One bereaved father said, "the period following the funeral is perhaps the most difficult time for the bereaved...[This is the time that parents must] absorb the magnitude of their loss and begin to integrate it into the rest of their lives" (Bramblett 1991, 39). Bereaved parents need to have extended remembrances of their child for a long while after the event, especially on anniversaries, birthdays, holidays, or special events, such as Mother's Day or Father's Day.
- Bereaved parents need to know that their child will be remembered, not just by them but also by family and friends. They need to have the child acknowledged and referred to by name. They want that child's life to matter. They do not want to forget and they don't want others to forget. One bereaved parent said, "The mention of my child's name may bring tears to my eyes, but it also brings music to my ears" (Anonymous).
Grieving keeps memories alive for bereaved parents and retains a place in their families and in their hearts for the dead child...[it is] a continuous process with peaks, valleys, and plateaus; it is a complex process that varies with each individual. - Arnold and Gemma 1994, 1994, 28
When Trying To Comfort Grieving Parents
- Acknowledge the child's death by telling the parents of your sadness for them and by expressing love and support; try to provide comfort.
- Visit and talk with the family about the child who died; ask to see pictures or mementoes the family may have.
- Extend gestures of concern such as bringing flowers or writing a personal note expressing your feelings; let the parents know of your sadness for them.
- Attend the child's funeral or memorial service.
- Remember anniversaries and special days.
- Donate to some specific memorial in honor of the child. Offer to go with the parent(s) to the cemetery in the days and weeks after the funeral, or find other special ways to extend personal and sensitive gestures of concern.
- Make practical and specific suggestions, such as offering to stop by at a convenient time, bringing a meal, purchasing a comforting book, offering to take the other children for a special outing, or treating the mother or father to something special.
- Respect the dynamics of each person's grief. The often-visible expressions of pain and confusion shown by grieving parents are normal. Grief is an ongoing and demanding process.
- Avoid the parents or the grief. Refrain from talking about the child who died or referring to the child by name.
- Impose your views or feelings on the parents or set limits for them about what is right or appropriate behavior.
- Wait for the parents to ask for help or tell you what they need.
- Tell them you know just how they feel.
- Be afraid to let the parents cry or to cry with them.
How Grieving Parents Attempt To Cope With The Loss And Move On
- Bereaved fathers and mothers try to cope with their grief by:
- Admitting to themselves and others that their grief is overwhelming, unpredictable, painful, draining, and exhausting-that their grief should not be diminished or ignored.
- Allowing themselves to be angry and acknowledging that they are vulnerable, helpless, and feeling disoriented.
- Trying to understand that to grieve is to heal and that integrating grief into their lives is a necessity.
- Acknowledging the need and desire to talk about the child who died as well as the moments and events that will be missed and never experienced with the child.
- Maintaining a belief in the significance of their child's life, no matter how short.
- Creating memorial services and other rituals as ways to commemorate the child's life.
- Deriving support from religious beliefs, a sense of spirituality, or a personal faith.
- Expressing feelings in journals, poetry, prayers, or other reflective writings or in art, music, or other creative activities.
- Trying to be patient and forgiving with themselves and others and refraining from making hasty decisions.
When you accept what has happened, you aren't acknowledging that it is okay but rather, that you know you must find a way to keep growing and living-even if you don't feel like it...[Don't let] grief be your constant companion...Realize that your grief is born out of unconditional love for your child and rejoice in that love which will never end... Embracing life again is not a sign that you have stopped missing your baby, but an example of a love that is eternal. - WISCONSIN PERSPECTIVES NEWSLETTER, SPRING 1989, 3
- Counting on, confiding in, and trusting those who care, listen, and hear, those who will walk with them, and not be critical of them, those who will try to understand their emotional and physical limitations.
- Increasing their physical activity and maintaining a healthful diet.
- Volunteering their services to organizations concerned with support for bereaved parents.
- Obtaining help from traditional support systems, such as family, friends, professionals or church groups, undergoing professional counseling, joining a parent support group, or acquiring information on the type of death that occurred as well as about their own grief.**
- Reassuring themselves and others that they were and still are loving parents.
- Letting go of fear and guilt when the time seems right and the grief seems less.
- Accepting that they are allowed to feel pleasure and continue their lives, knowing their love for their child transcends death.
** Grief support groups are often available through area hospitals, churches, or local chapters of national organizations, such as State SIDS or SIDS Alliance programs or through support organizations, such as SHARE, Resolve Thru Sharing, Compassionate Friends, and others.
When children die, the bond doesn't break... [But] the parents face two mutually exclusive facts. The child is gone and not coming back, and the bond is...as powerful a bonding as people have in their abilities... [Bereaved parents attempt] to let go, not of the child, but of the pain. - FINKBEINER 1996, 244, 249
Children are valuable and precious symbols of what lies ahead. Children are considered the hope of the future. When a child dies, that hope is lost.
Two universals stand out when reflecting on parental grief-a child's death is disorienting, and letting go of a child is impossible. Parents never forget a child who dies. The bond they formed with their child extends beyond death. As survivors, bereaved parents try to adapt to the new existence forced on them. They try to pass on to others the love and other special gifts they received from their child; they try to make the child who died a part of their lives forever; they constantly try to "honor the child who should have lived" (Finkbeiner 1996, xiv). Bereaved parents encourage others who care for and about them to do the same. They ask others to help them, to be for them "a lifeline of support, a lifeline to survival [and to understand]...the crying of their souls" (Donnelly 1982, ix).
Bereaved parents say, "Our children are in our blood; the bond with them doesn't seem to break [and they attempt to] find subtle and apparently unconscious ways of preserving that bond" (Finkbeiner 1996, xiii, xiv). Bereaved parents need to do this to deal with what seems like an endless roadblock of loss and sadness. One bereaved parent expressed it by saying that the wound heals, but the scar remains forever.
What has happened to these parents has changed their lives; they will never see life the same way; they will never be the same people. As they attempt to move forward, bereaved parents realize they are survivors and have been strong enough to endure what is probably life's harshest blow. By addressing their grief and coping with it, they struggle to continue this journey while making this devastating loss part of their own personal history, a part of their life's story, a part of their very being.
Bereaved parents learn to live with the memories, the lost hopes, the shattered dreams. [They] never 'get over' the death, but [they] do recover, adjust and learn to live with [the] pain. - DONNELLY 1982, X
In writing about bereavement, Rollo May, the religious psychologist said that the only way out is ahead and the choice is whether to cringe from it or to affirm it. To be able to continue this lifetime journey and to make it manageable and productive, bereaved parents must move ahead and affirm this loss while also affirming their own lives.
Eventually, time will cease to stand still for these parents. Painful and terrible moments will still occur-striking, poignant, but in some ways comforting, reminders of the child who died. There will also be regrets for experiences that were never shared. But at some unknown and even unexpected point, these parents will come to realize that there can be good moments, even happy and beautiful moments, and it will not seem impossible or wrong to smile or laugh, but it will seem right and beautiful and a fitting way to honor and remember the child who died. One day, bereaved parents may come to be "surprised by joy" (Moffat 1992, xxvii).
But in time... nature takes care of it; the waves of pain lose intensity a little and come less frequently. Then friends and relatives say the parents are getting over it, and that time heals all wounds. The parents themselves say that as the pain lessens, they begin to have energy for people and things outside themselves...This is a decision parents say [they] must make to live as well as they can in [their] new world... They can come to be happy, but never as happy. Their perspective on this and everything has changed. Their child's death is the reason for this and is a measure of the depth and breadth of the bond between parent and child. - FINKBEINER 1996,12, 20, 22, 23
Arnold, J.H. and P.B. Gemma. A Child Dies: A Portrait of Family Grief. Rockville, MD: Aspen Systems Corporation. 1983.
Arnold, J.H. and P.B. Gemma. A Child Dies: A Portrait of Family Grief. Philadelphia, PA: The Charles Press Publishers. Second Edition. 1994.
Bramblett, J. When Good-bye Is Forever: Learning to Live Again After the Loss of a Child. New York: Ballantine Books. 1991.
Cordell, A.S. and N. Thomas. "Fathers and Grieving: Coping with Infant Death. Journal of Perinatology, Vol. X, No. 1, March 1990.
Corr, C.A., H. Fuller, C.A. Barnickol, and D. M. Corr (Eds.). Sudden Infant Death Syndrome: Who Can Help and How. New York: Springer Publishing Company, Inc. 1991.
DeFrain, J., L. Ernst, D. Jakub, and J. Taylor. Sudden Infant Death Syndrome: Enduring the Loss. Lexington, MA: Lexington Books. 1991.
Donnelly, K. F. Recovering From the Loss of a Child. New York: Macmillan Publishing Co. 1982.
Finkbeiner, A. K. After the Death of a Child: Living with Loss Through the Years. New York: Simon and Shuster Inc. 1996.
Horchler J. N. and R.R. Morris. The SIDS Survival Guide: Information and Comfort for Grieving Family and Friends and Professionals Who Seek to Help Them. Hyattsville, MD: SIDS Educational Services. 1994.
Hosford, C. Fact Sheet: When a Twin Dies. Baltimore, MD: Maryland SIDS Information and Counseling Program. 1994.
Moffat, M.J. (Ed.) In the Midst of Winter: Selections from the Literature of Mourning. New York: Random House. 1992.
Neugeboren, J. An Orphan's Tale. New York: Holt, Rinehart & Winston. 1976.
Rando, T.A. (Ed.) Parental Loss of a Child. Champaign, IL: Research Press Company. 1986.
Schiff, H.S. The Bereaved Parent. New York: Penguin Books. 1977.
Staudacher.C. Men and Grief: A Guide for Men Surviving the Death of a Loved One, A Resource for Caregivers and Mental Health Professionals. Oak-land, CA: New Harbinger Publications, Inc. 1991.
Wisconsin Perspectives Newsletter. Milwaukee, WI: Wisconsin Sudden Infant Death Center, Spring 1989.
Wisconsin Perspectives Newsletter. Milwaukee, WI: Wisconsin Sudden Infant Death Center, December 1996.
Wisconsin Perspectives Newsletter. Milwaukee, WI: Wisconsin Sudden Infant Death Center, February 1997.
Staff of the National SIDS Resource Center (NSRC) collaborated in the preparation of this publication. We have tried to express our own thoughts and ideas, but most especially, we have drawn from our experiences with bereaved parents, whether in person, by phone, or from their own writings and reflections. We have learned from these parents, and we would like to share what we have learned with others.
We hope that this publication will help our readers better understand the magnitude of parental grief and its aftermath. We also hope that we may help others hear what grieving parents mean when they speak about "the crying of their souls."
We are deeply grateful to the many parents and caregivers who have been willing to share such sensitive and personal reflections with others. We have freely quoted from them and acknowledged each source whenever it was identified. A few citations remain anonymous because we were not able to identify their source.
NSRC staff also wish to thank the following two individuals who graciously offered their comments and suggestions and from whose publications we have quoted liberally:
Joan H. Arnold, PhD, RN
Associate Professor, College of New Rochelle, School of Nursing; Consultant to the New York City Information and Counseling Program for Sudden Infant Death Syndrome; and coauthor with Penelope B. Gemma of A Child Dies: A Portrait of Family Grief.
Joani N. Horchler
SIDS Parent; Executive Director of SIDS Educational Services Inc., Hyattsville, MD; and coauthor with Robin R. Morris of The SIDS Survival Guide: Information and Comfort for Grieving Family & Friends & Professionals Who Seek to Help Them.
Source: National SIDS Resource Center
Page last modified or reviewed on January 23, 2014
Filed Under: Uncategorized
Grace H. Christ, D.S.W.,*George Bonanno, Ph.D.,*Ruth Malkinson, Ph.D.,†and Simon Rubin, Ph.D.‡
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 substantially 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]. Management 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 strengthened, 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/compassionate friends.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:
Conflict and anger, at times directly or indirectly blaming the spouse for the death, [34, 56] are frequently described as a way of dealing with painful feelings.
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 special intimacy and strength of the parent–child bond, unlike most other relationships [17, 28];
the connection with the parent's hopes and dreams for the future and even immortality [17, 94, 95];
the challenge to parental identity as competent protector, provider, nurturer;
the social stigma associated with child death [96, 97];
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 different 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?
Can studies move beyond outcomes such as grief symptoms, depression, and social support to include broader variables of self-esteem, personal growth, and flexibility [4, 105]?
What are the barriers to recruitment of research samples in this area and how can they overcome?
Bonanno, G., Grief and emotion: A social–functional perspective, In: Handbook of be reavement research, M. Stroebe, editor. et al., Editors. 2001. Washington, D.C.: American Psychological Association. Pp.493–516.
Fish, W., Differences of grief intensity in bereaved parents, In: Parental loss of a child, T. Rando, editor. , Editor. 1986. Champaign, Ill: Research Press. Pp.415–428.
Martinson, I., B. Davies, and S. McClowry, Parental depression following the death of a child. Death Studies, 1991. 15:359–367.
Rubin, S. and R. Malkinson, Parental response to child loss across the life-cycle: Clinical and research perspectives, In: Handbook of bereavement research: Consequences, cop ing, and care, M. Stroebe, editor. et al., Editors. 2001. Washington, D.C.: American Psychological Association Press. Pp.219–240.
Sanders, C., A comparison of adult bereavement in the death of a spouse, child, and parent. Omega, 1979–1980. 10: 303–322.
Zisook, S. and L. Lyons, Bereavement and unresolved grief in psychiatric outpatients. Omega: Journal of Death and Dying, 1989–1990. 20(4):307–322.
Stroebe, M., editor; , W. Stroebe, editor; , and R. Hansson, editor. , Editors. Handbook of bereavement: Theory,research, and intervention. 1993, New York: Cambridge University Press.
Rates of homicide, suicide, and firearm related deathamong children: 26 industrialized countries. Centers for Disease Control and Prevention: Mortality and Morbidity Weekly Report, 1997. 46(7): 101–105. [PubMed: 9045035]
Wingfield, K., M. Petit, and T. Klempner, Mortality trends among U.S. children andyouth. 1999. Washington D.C.: Child Welfare League of America.
Bonnano, G. et al., Resilience to loss and chronic grief: A prospective study from pre-bereavement to 18 months post-loss. Journal of Personality and Social Psychology, 2002. In press.
Neimeyer, R., N. Keese, and B. Fortner, Loss and meaning reconstruction: Propositions and procedures, In: Traumatic and nontraumatic loss and bereavement: Clinical theory and practice, R. Malkinson, editor; , S. Rubin, editor; , and E. Witztum, editor. , Editors. 2000. Madison, Conn.: Psychosocial Press Press. Pp.197–230.
Wolfe, J. et al., Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care. Journal of the American Medical Association, 2000. 284(19):2469–2475. [PubMed: 11074776]
Parkes, C. and R. Weiss, Recovery from bereavement. 1983. New York: Basic Books.
Lang, A., L. Gottlieb, and R. Amsel, Predictors of husband and wives' grief reactions following infant death: The role of marital intimacy. Death Studies, 1996. 20:33–57. [PubMed: 10160531]
Walwork, E. and P. Ellison, Follow-up of families in whom life support was withdrawn. Clinical Pediatrics, 1985. 24:14–20. [PubMed: 3965226]
Bonanno, G. and N. Field, Examining the delayed grief hypothesis across 5 years of bereavement. The American Behavioral Scientist, 2001. 44(5):798–816.
Bowlby, J., Attachment and loss: Loss, sadness and depression. Vol. 3. 1980, New York: Basic Books. P. 472.
.Freud, S., Mourning and melancholia. 1915/1957, London: Hogarth Press. Pp. 273– 302.
Prigerson, H. and S. Jacobs, Caring for bereaved patients: All the doctors just suddenly go. Journal of the American Medical Association, 2001. 286(11):1369–1376. [PubMed: 11560543]
Birenbaum, L. et al., The response of children dying and death of a sibling. Omega, 1989. 20:213–228.
Hutton, C. and B. Bradley, Effects of sudden infant death on bereaved siblings: A comparative study. Journal of Child Psychology and Psychiatry, 1994. 35:723–732. [PubMed: 8040224]
Fanos, J. and B. Nickerson, Long-term effects of sibling death during adolescence. Jour nal of Adolescent Research, 1991. 6:70–82.
Rosen, H., Prohibitions against mourning in childhood sibling loss. Omega, 1985. 15:307–316.
Layne, D. et al., Trauma/grief-focused group psychotherapy manual. 1999. Sarajevo, Bosnia: UNICEF.
Nader, K., Childhood traumatic loss: Interaction of trauma and grief, In: Death and trauma: The traumatology of grieving. C. Figley, editor; , B. Bride, editor; , and N. Mazza, editor. , Editors. 1997. New York: Hamilton Printing Company, Pp.17–41.
Pynoos, R., Grief and trauma in children and adolescents. Bereavement Care, 1992. 11:2–10.
Rando, T., Complications of mourning traumatic death, In: Living with grief and sud den loss., K. Dolca, editor. , Editor. 1996. Washington, D.C.: Hospice Foundation of America. Pp.139–160.
Sanders, C., Grief: The mourning after. 1989. New York: John Wiley & Sons.
Kubler-Ross, E., Death and the final stage of growth. 1975. Englewood Cliffs: Prentice Hall, Inc.
Ragan, P. and T. McGlashan, Childhood parental death and adult psychopathology. American Journal of Psychiatry, 1986. 143(2):153–157. [PubMed: 3946646]
Rutter, M., Stress research: Accomplishments and tasks ahead, In: Stress, risk and resil ience in children and adolescents, R. Hagerty, editor. et al., Editors. 1994. Cambridge, U.K.: Cambridge University Press. Pp.354–385.
Oliver, B., Effects of a child's death on the marital relationship: A review. Omega, 1999. 39(3):197–227.
Bohannon, J., Grief response of parents to neonatal death and parent participation in deciding care. Omega, 1990–1991. 22: 109–121.
DeFrain, J., Learning about grief from normal families: SIDS, stillbirths, and miscarriages. Journal of Marital and Family Therapy, 1991. 17:215–223.
Johnson, S., After a child dies: Counseling bereaved families. 1987. New York: Springer Publishing Company.
Miles, M. and A. Demi, Guilt in bereaved parents, In: Parental loss of a child, T. Rando, editor. , Editor. 1986. Champaign, Ill.: Research Press Company. Pp.97–118.
Erikson, E., Childhood and society. 2nd ed. 1963. New York: W. W. Norton.
Klass, D., Marriage and divorce among bereaved parents in a self-help group. Omega: Journal of Death and Dying, 1986–1987. 17:237–249.
Klass, D., Parental grief: Solace and resolution. 1988. New York: Springer.
Malkinson, R. and L. Bar-Tuv, The aging of grief in Israel: A perspective of bereaved parents. Death Studies, 1999. 23(6):413–431. [PubMed: 10558506]
Rubin, S., A two-track model of bereavement: Theory and research. American Journal of Orthopsychiatry, 1981. 51(1):101–109. [PubMed: 7212022]
Rubin, S., The two-track model of bereavement: Overview, retrospect and prospect. Death Studies, 1999. 23(8):681–714. [PubMed: 10848088]
Jones, E., Life and work of Sigmund Freud p.20. First ed. Vol. 3. 1957. New York: Basic Books.
Christ, G., Healing children's grief: Surviving a parent's death from cancer. 2000, New York: Oxford University Press.
Bonanno, G. and S. Kaltman, Toward an integrative perspective on bereavement. Psy chological Bulletin, 1999. 125:760–776. [PubMed: 10589301]
Malkinson, R., editor; , S. Rubin, editor; , and E. Witztum, editor. , Editors. Traumatic and nontraumatic lossand bereavement: Clinical thory and practice. 2000. Madison, Conn.: Psychosocial Press.
Stroebe, M., H. Schut, and C. Finkenauer, The traumatization of grief? A conceptual framework for understanding the trauma-bereavement interface. Israeli Journal of Psy chiatry and Related Science, 2001. 38(3–4):185–201. [PubMed: 11725417]
Stroebe, M. and H. Schutt, Models of coping with bereavement: A review, In: Hand book of bereavement research, M. Stroebe, editor. et al., Editors. 2001. Washington, D.C.: American Psychological Association. Pp.375–403.
Nader, K., Children's exposure to traumatic experiences, In: Handbook of childhood death and bereavement, C. Corr, editor; and D. Corr, editor. , Editors. 1996. New York: Springer Publishing Co. Pp.201–220.
Christ, G., Adaptation of parentally bereaved children: Uncomplicated and complicated bereavement. Oncology Spectrum, in Press.
Kazak, A. et al., Post-traumatic stress in survivors of childhood cancer and mothers: Development and validation of the impact of traumatic stressors interview schedule (ITSIS). Journal of Clinical Psychology in Medical Settings, 2001. 8(4):307–323.
Freeman, L., D. Shafer, and H. Smith, Neglected victims of homicide: The needs of young siblings of murder victims. American Journal of Orthopsychiatry, 1996. 66(3):337–345. [PubMed: 8827257]
Freeman, L., Clinical issues in assessment and intervention with children and adolescents exposed to homicide, In: Promoting cultural competence in children's mental health services: Systems of care for children's mental health, M. Hernandez, editor; and M. Isaacs, editor. , Editors. 1998. Baltimore: Paul H. Brooks Publishing Co. Pp.185–206.
Pynoos, R. and K. Nader, Psychological first aid and treatment approach to children exposed to community violence: Research implications. Journal of Traumatic Stress, 1988. 1(4):445–473.
Elkolit, M., The effectiveness of psychological debriefing. Acta Psychiatrica Scandinavia, 2001. 104:423–437. [PubMed: 11782235]
Rando, T., Parental adjustment to the loss of a child, In: Children and death, D. Papadatou, editor; and C. Papadatos, editor. , Editors. 1991. New York: Hemisphere Publishing Company. Pp.233–252.
Murray, J. and V. Callan, Predicting adjustment to perinatal death. British Journal of Medical Psychology, 1988. 61:237–244. [PubMed: 3179246]
Schwab, R., Effects of a child's death on the marital relationship: A preliminary study. Death Studies, 1992. 16:141–154.
Lang, A. and L. Gottlieb, Marital intimacy in bereaved and nonbereaved couples: A comparative study, In: Children and death, D. Papadatou, editor; and C. Papadatos, editor. , Editors. 1991. New York: Hemisphere Publishing Corporation. Pp.267–275.
Dyregrov, A. and S. Matthiesen, Similarities and differences in mothers' and fathers' grief following the death of an infant. Scandinavian Journal of Psychology, 1987. a. 28:1– 15. [PubMed: 3672055]
Lang, A. and L. Gottlieb, Parental grief reactions and marital intimacy following infant deaths. Death Studies, 1993. 20:33–57. [PubMed: 10160531]
Forrest, G., E. Standish, and J. Baum, Support after perinatal death: A study of support and counseling after perinatal bereavement. British Medical Journal, 1982. 285:1475– 1479. [PMC free article: PMC1500632] [PubMed: 6814610]
Zelauskas, B., Siblings: The forgotten grievers. Issues in Comprehansive Pediatric Nurs ing, 1981. 5:45–52. [PubMed: 6912838]