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Hospice Care for Children$

Ann Armstrong-Dailey and Sarah Zarbock

Print publication date: 2008

Print ISBN-13: 9780195340709

Published to Oxford Scholarship Online: November 2011

DOI: 10.1093/acprof:oso/9780195340709.001.0001

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Caring for Bereaved Parents

Caring for Bereaved Parents

Chapter:
(p.181) 7 Caring for Bereaved Parents
Source:
Hospice Care for Children
Author(s):

J. William Worden

James R. Monahan

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780195340709.003.0008

Abstract and Keywords

This chapter examines the issue of caring for bereaved parents in the context of pediatric hospice care. It explains that the death of one's child can be one of the most severe, debilitating, and enduring losses to grieve and that this loss continues to present itself long after the pain of other deaths might have subsided. The chapter discusses the factors associated with the difficulty of dealing with the loss of a child that hospice care personnel need to understand.

Keywords:   bereaved parents, hospice care, children's death, grieving, hospice personnel

The death of one's child can be one of the most severe, debilitating, and enduring losses to grieve. This is especially true when the child is underage and still considered a child and dependent on the parent for life-sustaining activities. There are a number of factors that contribute to this difficulty. Hospice care personnel need to understand these factors, know what the issues are for bereaved parents, and know how to intervene with appropriate and facilitating interventions.

Stress On the Parent

There are a number of factors that influence the stress experienced by a bereaved parent. The most obvious is the untimeliness of the death. In our culture, we believe that parents are not supposed to outlive their children, and the death of a child fl aunts this orderliness. A contributing factor to this belief is the decreasing infant mortality rate in the United States. Infant mortality is defined as death prior to the age of 1 year.1 The infant mortality rate measures the number of infant deaths per 1000 live births. From 1978 to 2005 the infant mortality rate decreased by 50%, from 14 deaths per 1000 births to 7 per 1000 births. When a difficult event happens infrequently, it makes it more difficult to accept. This “out-of-season” death challenges the parents' need to find some meaning in the death. Frequently asked questions are: “Why me?” “Why my child?” “Where was God?” “How can I go on?” Such meaning is not easy to find and can challenge the parents' belief system about the world and evoke a major spiritual crisis. Quite often bereaved parents report changes in fundamental life values and philosophical beliefs as a consequence of experiencing the death of a child.2

(p.182) It is the role of parents to protect their children, especially underage children. The death of the child assaults this role, and one of the major stressors when a child dies is the question, “How could I have not prevented this from happening?”

Guilt is a frequent feature of bereavement, and this is especially true for bereaved parents. Guilt may arise from questions about whether they made the right treatment decisions for the child, about the decision to pursue palliative rather than aggressive treatment, or even about having conceived or given birth to a child who developed a terminal illness. There may be guilt about “genetically infecting” the child with the disease. Guilt may also result from breaking the perceived cultural injunction to protect one's child against harm. Another cause of guilt felt by a bereaved parent may arise from either behaviorally or emotionally abandoning other children or family members while caring for the deceased child. Miles and Demi have posited five types of guilt that bereaved parents may experience.3 The first is cultural guilt. Society expects parents to be guardians of their children and to take care of them. The death of one's child is an affront to this social expectation and may lead to this type of guilt. Causal guilt is a second type. If the parent were responsible for the death of the child through some real or perceived negligence, the parent may experience causal guilt. Causal guilt can also be a part of the parent's experience when the death occurs from some inherited disorder. Moral guilt is characterized by the parents' feeling that the death of the child was due to some moral infraction in their present or earlier life experience. There are a variety of such presumed infractions. One frequently seen is residual guilt from an earlier terminated pregnancy. “Because I elected to terminate a pregnancy, I am now being punished for that act by losing my child.” Survival guilt may also be found among bereaved parents: Why did my child die and why am I still alive? Survival guilt is more frequently found when the parent and child have been involved in the same accident, and the parent survives but the child does not. Finally, there is recovery guilt. Some parents feel guilty when they move through their grief and want to get on with their lives. They believe that such recovery somehow dishonors the memory of their dead child and that society might judge them negatively.

Bereaved parents frequently need to blame someone for the death of their child and blame can sometimes be projected guilt. Blame is a strong need when the child died in an accident or by suicide or homicide. But the same can hold true for the child who dies of natural causes. Sometimes this need to blame is targeted against a spouse or other family member and places stress on the family system. It is also possible for a family member, such as a child, to be scapegoated after a death. Counselors need to be aware of these dynamics and help the family to find the most appropriate ways to deal with their anger and blame.

(p.183) Concurrent losses after a child's death can also lead to parental stress. For example, one mother cared for her leukemic child for several years, and during this time he was one of the first to receive a bone marrow transplant. After her son died, the mother became aware that she had not only lost a son but had also lost the role of mother of a sick child, something that helped her to define herself and provided her with activity to fill her day. In addition, she lost the support that she received from the frequent contact with staff and other family members and patients at the oncology center where her son had been treated. In one Asian family the mother lost not only her son but also her status with the husband's family: she had been accepted into her husband's family primarily because she had born him a son. After the son's death she experienced ongoing rejection by his family, another loss.

Stress On the Marriage

Incompatible Grieving Styles

Partners do not always have similar styles of experiencing or expressing grief. This can be due to differences in personality, perceived gender roles, or levels of personal or spiritual development. Each parent needs to understand his or her own way of expressing grief, as well as their partner's grieving style.4 One partner may be more facile than the other at expressing and discussing emotions. An open expression of feelings may intimidate the other partner, close that partner off to communication, and thus drive the parents further away from each other. When a counselor is working with a couple, it is important not to appear to be siding with the more emotionally expressive partner. If this happens, the less expressive parent may feel left out and become frustrated with the counseling process. At the onset of counseling, the couple's communication with each other may be through the counselor. One parent may attend reluctantly or be there “just to help the other parent.” Often this will be the father. Some people believe that it does not help to dwell on the past, especially the painful past. For this reason they will not speak of the grief they are experiencing.

If partners do not understand each other's ways of grieving, the incompatibility can serve to drive them apart. Conflict may arise when one partner feels a need to talk about the experience and the other sees that as pointless. This may lead to marital conflict during an already stressful time. The most common grief-related conflict for grieving parents centers on what each partner believes to be the most appropriate choice of coping behavior. This conflict deals with internal verses external working-through of (p.184) grief.5 One study found that good communication within couples enabled them to experience more grief early on and led to better grief resolution for both men and women.6

Individual and Gender Differences

Bereaved parents handle grief as they do other major stressors in life. They experience and display grief in a manner congruent with their personalities. Most individuals tend to be more introverted or extroverted, more cognitive or emotional. Grief will be experienced and displayed according to these differences.

Extroverts find comfort in being around a group. The group may consist of other grieving individuals or any group of people. An extrovert will want to talk about the loss and ensuing feelings. He or she will probably feel a need to discuss the events leading up to and since the death. Introverts, by contrast, usually want to be alone or with a few trusted friends. The introvert has a tendency to internally reflect on the loss and ensuing feelings. If the introvert does discuss the situation, it is more likely to be about conclusions rather than the details leading to these conclusions.

There are also gender differences that play out in the expression of grief.7 Gender-role expectations are part of the socialization process of our society and its culture. Studies of men reveal that men are more likely to fear the consequences of emotional expression in a social context. Men disclose far less intimate information to others than do women. For men, close friendships are based on shared activities rather than intimacy and assumed loyalties rather than shared feelings. Bereaved fathers are faced with several double binds as they struggle to cope with their child's death. First, fathers are given little social support, but they are expected to be a major source of support for their wives, children, and other family members. Second, fathers are confronted with the culturally idealized notion that grief is best handled through expressiveness, whereas they need to control such frightening and overwhelming expressions of grief.8 These conflicts between social and personal expectations can lead men to feel frustration, anger, and aloneness in their grief. Sometimes these feelings lead to excessive alcohol use or having extra-marital affairs.

It may be necessary to have a third person, such as a counselor, help the couple understand their individual differences and that there is no correct way to grieve. It is beneficial for each partner if he or she grieves in a style that is congruent with his or her personality and feels understood by the other.

(p.185) Sexual Intimacy

The death of a child can place strain on the couple's sexual intimacy. Couples frequently report sexual abstinence and lack of sexual interest because of overwhelming grief. Powerful feelings of loneliness, yearning, and sadness that can be elicited during sex may render sexual contact aversive. This lack of interest may be true for one partner and not the other. If so, this disparity will place strain on the relationship.9

The opposite can also be true. Sexual activity may be sought out by some couples shortly after the death. For these couples, sexual intimacy serves as a reaffirmation of life and supports their strong need to be close to each other and take care of each other.10 Johnson11 studied bereaved couples and noted that some men who previously could not be close to their wives without sexual activities could, after the loss, be close without sex. This was a surprise to some of the men, who now understood why their wives enjoyed and were comforted by hugging.

Divorce Potential

It is important for grieving parents to understand the potential for their relationship to disintegrate. Such parents are frequently reminded by well-meaning friends and family that many marriages end in divorce after the death of a child. If so, this may become a concern of the grieving parents. Data are available that both support and do not support the breakup of a marriage due to the death of a child.12

The group Bereaved Parents conducted a literature survey and found that there were no conclusive studies showing an increased divorce rate resulting directly from parental grief. The results indicated, however, that there was sufficient anecdotal evidence to suggest an increased divorce rate among this population.13 In the same article, Klass gives an excellent description of the paradoxical effect of the death of a child on the relationship of the parents: “The shared loss creates a new and very profound tie between them at the same time that the individual loss each of them feels creates an estrangement in the relationship. The paradox is expressed differently in couples with different relationships prior to the death.”13 Klass summarizes by indicating that the divorce rate may indeed be higher but that the increase in the divorce rate may not be a direct result of the death of the child but of preexisting factors.

If grieving parents are told about or read about the increased potential for divorce, it may become the expected outcome. After all, the unthinkable happened with the death of the child, so why not this? A few months (p.186) after the death of his young son, a father stated, “I am glad that we found out that not all grieving parents get a divorce. I am relieved to know that does not have to be down the road for us.”

The focus of grief counseling should not be on divorce statistics but on surmounting the stressors brought about by the child's death and on addressing underlying marital difficulties. For some couples, mutual support and intimacy may increase during the intense pain of grief. The opportunity exists for the parents to develop or enhance a supportive relationship, and the risks of the situation should be reframed into opportunities to nurture the marriage.14

Stress On the Family

Replacement Child

One area of concern for the family and grief counselor is what is called the “replacement child.” This term refers to the substitution of another child for the child who has died. The replacement child may be conceived subsequent to the death or during the terminal phase of the child's illness. The replacement child could also be an adopted child or a sibling of the child who died. This replacement child is often seen as a second chance or as a way to make up for mistakes or shortcomings the parents perceive in their parenting of the deceased child. It is important, however, that the hospice professional not assume that any child born subsequent to the death of the sibling is automatically a replacement child. The parents may not be placing the new child in this role. There will naturally be comparisons with the deceased child. These comparisons may center on the child's age, physical characteristics or mannerisms, or milestones in the child's development or maturation. The distinguishing characteristic of the relationship with a child in the role of replacement child is the inability to accept or acknowledge the child as distinct from the deceased sibling.

Parents should be encouraged not to have further children until they have worked through the loss of the first child. Otherwise, they may not do the necessary grief work, or they may work out their grief through the replacement child.15

The child who is placed in this role is also at a distinct disadvantage. Being a replacement child can interfere with cognitive and emotional development. It may lead to a relative absence of a sense of individuality, as the child is treated as the deceased sibling.16 The development of the replacement child is further complicated because replacement children are often overprotected by fearful parents and raised in homes dominated by (p.187) images of the dead child.17 , 18 Replacement children are expected to emulate the deceased child—a child who can be easily over-idealized—and are not allowed to develop their own identities.

Roles Played by the Dead Child

Children play various roles in the lives of their parents. After the death of a child, the loss of these roles is accompanied by grief as the parents confront life without each intra- and interpersonal facet added by the child. Among the various facets a child may add are a sense of intergenerational continuity, a means for the parents to accomplish something that they personally might have been unable to do, a sense of accomplishment, a state of excitement, and something to brighten the day. The child is often the means to starting a conversation with strangers, a source of recognition as strangers pass the parent with a cute baby or child. This attention is often accompanied by a sense of accomplishment and pride on the part of the parent. Whatever the roles may have played, they are lost.

The sick or terminal child may have brought about certain recognition. Being a parent of a deceased child places the parents in a new social role. The disclosure by parents that a child is dying or has died is often met with compassion, sorrow, anxiety, apprehension, or pity. The child continues to play a part in the life and identity of the parent.

Klass19 asserts that the loss of a child is a permanent condition. It is a loss to the self-image of the parent. He states that the parents face two tasks: (1) learning to live without the child, which includes a new form of interacting with the social network; and (2) internalizing an inner representation of the child that brings comfort.

Unaddressed Grief

Some bereaved families have a “no-talk” rule and choose to deal with their grief by not addressing it. The deceased child's name may seldom be mentioned. If there are other children in the family, they may not be given full or even factual details of the circumstances surrounding the death. The parents may intend to protect the siblings from pain, or they may believe that the siblings cannot understand or feel the loss. This situation may arise when the perceived role of the parents is to be strong and being strong means showing no painful emotions. Unaddressed grief may also reflect the religious convictions the family holds, namely, that it is wrong to display or feel anything that may convey a doubt in the actions of God. Anger, doubt, or questioning the loss is to question the ways of God.

(p.188) The absence of discussion of the death or of a display of grief leaves the siblings without a model to deal with what they may be feeling or thinking. This no-talk rule may lead to future problems, including an exaggerated fear of death or of any objects, events, or people associated with the death. In time, this can lead to a delayed grief reaction that may be triggered by another loss years later. The surviving family members may develop an inability to form intimate relationships because of an underlying fear of being abandoned.20 It is important for the professional working with such a family to be aware of the no-talk rule. The professional may point out the importance of the siblings' learning to express their grief and the potential long-term consequences of unexpressed grief.

Discussion of the events surrounding the death of the child may be even more difficult if the death was due to AIDS. Many parents of children of any age who died of this disease find it difficult to discuss their situation with others. If the child was older or an adult and contracted AIDS through intravenous drug abuse or unprotected anal intercourse, there may be social and emotional complications in addressing the death. The parents may feel responsible for the drug abuse, for not preventing it, for not noticing it, or for not doing the right things to stop it. If the disease was contracted through gay male sexual contact, the parent may feel somehow responsible for the offspring's homosexuality. Parents may have been able to come to grips with the fact that a child is dying but not with the fact that the child is gay. This can lead to cognitive and emotional dissonance, which may complicate the grief process.21 If the child is very young and contracted AIDS from the mother, there may be issues such as anger, guilt, or emotional overload and apathy. The situation may be further complicated if the disease was contracted from the child's father. The mother may be dealing with her own deteriorating body and failing mental capacity and probable death. This situation combined with possible social and economic problems may confound the grief associated with losing the child.

Risk Factors For Poor Outcome

Spinetta and colleagues22 followed bereaved parents for 3 years after the loss of their child. Parents who were doing better at that time (1) had a consistent philosophy of life that helped them find some meaning in the loss, (2) had viable and ongoing support, and (3) could give their dying child information and emotional support consonant with the child's needs. Parents who lacked these coping mechanisms did less well. One might surmise that parents whose children had longer illnesses would do better after the death. Such was not the case, although there was a trend in this direction.

(p.189) Lack of Support

Grieving is a social phenomenon. For grief to progress and the tasks of grief to be accomplished, it is important for the grieving person to have the opportunity to express and share grief with others and to talk about what he or she is going through. Such sharing includes talk about the events leading up to the death, including diagnosis, treatment, and interaction with others and with the deceased. Some people feel uncomfortable when they are around bereaved parents and may cut off conversations about the deceased. Because of this, support groups for bereaved parents, such as those sponsored by Bereaved Parents, can be a safe haven for grieving parents to share their thoughts and feelings with others who have also lost a child.

Segal and associates23 asked a group of bereaved parents what they would have wanted after the death of their child. Many parents felt that they were given insufficient information. They said that it would have been helpful to have more information about the cause of death, about risks to their other children, and about grief. When asked to give advice to those who are confronted with grieving parents, the participants listed the following as important:

  • Take the initiative to contact the parents.

  • Don't judge their grief reactions; rather, listen to them.

  • Give them practical help.

  • Repeat information as needed; the stress of the situation may preclude one from grasping it the first time.

  • Don't offer platitudes or artificial consolation.

Intervention Goals

Before Death

Bereavement interventions begin before the death of the child. There are several goals for such interventions that hospice personnel need to be aware of. Specific techniques of intervention can be tailored around these goals, depending on the child, the family, and the type of hospice setting and program. Here are some of the important goals.

First, help the family stay connected with their child until death. For most families, this is not difficult and needs little prompting. For others, however, seeing their child declining is a painful situation, and they may have trouble staying connected with the child until the end. One of our clients had a son who was born with major congenital defects. He lived for 6 years, (p.190) but during this time he was very demanding and difficult for the mother to manage. During his final hospitalization, she was not there with him, and she later developed serious clinical depression related to her guilt feelings of abandoning him during this period. It took considerable therapy after the death to help her work through her feelings.

Second, help to facilitate communication. This involves communication not only between the family and the caregiving staff but also among family members themselves. Being sensitive to what a parent or the patient wants to know or does not want to know is important, and facilitating this is a part of good hospice care. Helping parents say to their child what they need to say before the child dies is important and may preclude regrets after the death.

Third, help the family develop memories that they can hold and cherish long after the death. Pictures of the child and other family members can be important. Some hospice programs help families make videotapes or CDs of the dying child being with other family members. Making these films available to families gives them something concrete that they will cherish and replay over the years as they appropriately memorialize the child in their lives and in their family.

Fourth, help parents to negotiate the medical system. Some parents are well skilled in this and do not need our help. Others are more intimidated by the system and are hesitant to ask questions or to assert their preferences. Helping parents develop these skills through role playing and providing them encouragement to do what they need to do can be an important part of pre-bereavement counseling.

Fifth, provide respite care. The demands of caring for a sick child are many and often fall on the shoulders of the mother. The closer to death the child is, the more the mother may want to be with the child. Hospice volunteers are often good resources for this type of respite care so that the parent may take a break from caregiving responsibilities. This support may have to be provided by a professional. The parents may feel very uncomfortable leaving the child with a stranger whom they perceive as lacking the skills to recognize a potential problem with the child.

Sixth, help parents with the concept of appropriate death.24 This is a concept developed by Drs. Avery Weisman and J. William Worden in the Omega Project at the Massachusetts General Hospital. An appropriate death is a death that is consonant with the goals, values, and lifestyle of the individual. Although used more with adults, it can be a useful concept with children, particularly adolescents. One older adolescent girl wanted to spend her final weeks of life out of the family home and in an apartment near the shore. Although her parents would have preferred to have her home, they helped her find such living quarters where she (p.191) could experience a degree of autonomy, express the individuation appropriate to her age, and be with her friends—all values that were important to her.

Seventh, prethinking the funeral can be important for some parents. Helping parents talk about choices and think of the funeral or memorial service is difficult, but it also can help them plan a service that reflects the uniqueness of the child who is dying. In our experience, including family members such as siblings in this activity can be worthwhile. For some parents, this activity may not be acceptable, as it connotes to them a loss of hope and the reality that their child will not make it. However, those parents whose children are under hospice care tend to be more open to planning a service in advance of the death.

After Death

After death, the goals of intervention center around the tasks of mourning.21 Here, bereavement is not seen as falling into neat stages or even into predictable phases. Rather, the course of mourning can be seen as involving four tasks that must be accomplished. These tasks do not have to fall into a specified progression, and they can be reworked at various times, depending on the needs of the parents.

The first task of mourning is accepting the reality of the loss. Even in the case of an anticipated death, there is a certain sense of unreality after the loved one is gone. This sense of unreality is greatly heightened in the circumstance of a sudden death, such as an accident, homicide, or suicide. This acceptance of the reality is not just one of mental assent but involves emotional acceptance as well. One mother, whose 12-year-old daughter was killed in a house fire, went to visit her daughter's grave every day but would not let herself believe that her daughter was dead. For 2 years she went around saying, “I don't want you dead, I won't have you dead.” She finally realized that she was not moving through bereavement and sought out grief therapy. The focus of the therapy involved accepting the reality of her daughter's death and that the daughter would never return, and being able to say good-bye to her.

There are several ways to facilitate this task. If the parents see the body of their child and are able to have a service that commemorates the uniqueness of the child, it will help to bring home the reality of the loss. Talking about the child with the parents using the past tense—for example, “Ashley was a good swimmer,” and using difficult words like “dead”—can facilitate interactions with bereaved parents. It is also useful to encourage parents to visit the cemetery or other place of final disposition as a part of their grief work.

(p.192) One of the most difficult things for most bereaved parents to do is to dismantle the room that belonged to their child and do something with the child's belongings. Early after a loss these possessions can be seen as “linking objects” to the dead child. Later in bereavement some of these possessions become and remain “keepsakes.”25 There is no set time frame for this difficult task, but at some time it needs to be done. There are some parents who never accomplish this task and set up the room as a shrine to the dead child. This is a less healthy accommodation to the loss. Hearing from the bereavement counselor a facilitating comment such as “When you are ready, you will” can help parents struggling with this decision.

The second task of mourning is processing the pain of the loss. This pain involves the strong feelings and sensations associated with grief. If these feelings are cut off or not allowed to find expression, they will remain with the person, to be expressed at a later time when a subsequent loss triggers them. The expression of grief comes in many forms and is determined by one's culture, personality, and ego development and by the availability of social support. The support of others is most important in helping bereaved persons to not be overwhelmed by their pain.26 , 27

Hospice personnel who work with the bereaved can help mourners identify how they are feeling, sanction those feelings that the person may experience as awkward, and help them find expression for these feelings in a manner that will bring about both relief and resolution. Counselors need to be well versed in cultural differences in the expression of feelings and to ply their interventions within these cultural frameworks. For instance, the outward expression of feelings is not always socially appropriate in Korean and other Asian cultures, where internal grief may be more common. Individuals and families do not wish to burden others, especially their children, so they cry by themselves or smile artificially when they wish to cry.28

Several feelings can be problematic for bereaved parents. One of these is anger. Most bereaved parents experience some anger, which may include anger at their child for dying and causing them to hurt so much. The counselor needs to evaluate this displacement of anger onto another person for its appropriateness and help the parent find an expression of this anger that will bring it to conclusion.29 A father whose teenage son was killed in an automobile accident was not angry with the boy who was driving the automobile at the time of the accident but discovered that he was really angry at the driver's father. Once he discovered this target, he was encouraged to write a letter to the boy's father to express his strong feelings and identify the wants he had associated with these feelings.

Guilt is another feeling frequently found among bereaved parents. Sources of guilt were described earlier in this chapter. Some of this guilt is irrational and will resolve after reality testing. Parents who feel that they (p.193) did not do enough for the child may relinquish this guilt when led to examine just what they did and did not do. In cases in which the culpability is real, parents may need some professional assistance to deal with this.30

The third task of mourning is adjusting to an environment from which the deceased is missing. Some of these adjustments are obvious and others are subtle. An early confrontation for most bereaved parents afer the death of their child is how to answer when asked the question, “How many children do you have?” The first Christmas brings the dilemma of how many stockings to hang. Parents try different solutions to these challenges and may change their response as time passes and grief changes. What one adjusts to depends on the roles and type of relationship that the dead person had in one's life. Children play different roles in the family system and have specific personal meanings to each of the family members. Adjustment takes time, and this is one of the reasons why bereavement can be such a long process. Groups for bereaved parents can be useful, not only for the emotional support they provide but also because they can be a valuable resource for parents while they are dealing with this third task of mourning.

For many parents, one dimension of this task of mourning is finding some kind of meaning from the death of their child.31 How did it happen? Why did it happen? Parents may go about this in various ways. Some find meaning in adherence to religious and philosophical beliefs.32 Others find meaning through identification of the child's uniqueness and by finding some appropriate memorialization for the child. Still others find meaning by becoming involved in activities that can help individuals and society.33 Klass19 found that parents who could transform the parental role of helping and nurturing one's child to one of helping and nurturing others in a self-help group had more positive and less stressful memories of the deceased child.

The fourth task of mourning is to emotionally relocate the deceased so that one can move on with life. Traditionally, withdrawing emotional energy form the deceased was seen as a way to work through grief. We now know that mourners stay connected to the lost loved one through “continuing bonds.” Parents need to find ways to develop these bonds, retaining the memories of the dead child while still going on with life. The bereaved parent goes through a period of evolution in relation to the thoughts and memories associated with the child and does this in a way that allows him or her to continue on with life after the loss.34 , 35

One such parent eventually found an effective place for the thoughts and memories of her dead son so that she could begin reinvesting in life. She said:

Only recently have I begun to take notice of things in life that are still open to me. You know, things that can bring me pleasure. I know that I will continue to (p.194) grieve for Robbie for the rest of my life and that I will keep his loving memory alive. But life goes on, and like it or not, I am a part of it. Lately, there have been times when I notice how well I seem to be doing on some project at home or even taking part in some activity with friends.

Here is a bereaved parent who is moving through her grief and carrying on with her life without feeling that she is dishonoring the memory of her child. This is the ultimate and most challenging goal for any bereaved parent.

Intervention Models and Strategies

There are different models for providing bereavement services to grieving parents. These include (1) individual grief counseling for one or both parents, (2) couples counseling, (3) family counseling, and (4) bereavement support groups.36 The modality of the approach is determined by the request of the grieving parents and the clinical judgment of the counselor. Alexy37 found that bereaved parents wanted different kinds of counseling depending on which phase of mourning they were in. Murphy and colleagues found that the timing of the intervention was as important as the intervention itself when measuring the effectiveness of bereavement intervention.38

Individual Grief Counseling

The goal of grief counseling is to assist the grieving person with the various tasks of grief. Videka-Sherman39 pointed out that the goal of grief counseling is not to change the reality of the loss but to help parents adjust to the reality. Grief counseling assists the client with this task. Counseling is often helpful when the individual feels frustrated or stuck in the grief process. Because normal grief can take so many forms, individuals may feel as if they are not grieving appropriately or for the correct amount of time. Well-meaning family members and friends may support the belief that the grief process is not following a “correct” course. They often tell the grieving person that there must be something wrong because the intensity, variety, and duration of symptoms should be subsiding and the parent should be getting on with life. The first 6 months is often the time when grieving parents seek counseling because they are hurting and receiving messages that the pain is abnormal.

Couples Grief Counseling

Couples counseling is appropriate when grieving couples are in need of help with communication skills. Communication may be defi cient for (p.195) a number of reasons. Causes of incomplete communication include the following:

  1. 1. Single-focus communication when the child was ill. Because the focus for each parent may have been on the needs of the child, there may not have been much demand for communication other than about the child.

  2. 2. One parent is protective of the other. When one parent is feeling especially pained and the other appears to be having a good day, the hurting partner does not want to ruin the seemingly positive mood of the other.

  3. 3. One parent may misinterpret the behaviors of the other because of different grieving styles.

  4. 4. The child may have kept the couple together. After the child is gone, the reason for staying together is also gone. However, leaving and facing yet another loss at this time may be unbearable, so the couple stays together physically but not emotionally.

  5. 5. One parent may believe that it is a sign of weakness to discuss or display painful emotion to the other.

  6. 6. There may be anger or guilt about the death that is displaced or projected onto the other spouse.

The counselor's role is to help identify the issues behind poor communication and to facilitate more effective interactions. One particularly effective approach to working with bereaved couples is emotionally focused therapy developed by Les Greenberg and Sue Johnson.40

Family Grief Counseling

The goal of family grief counseling is to assist the family in adapting to life without the deceased child. The family is an interactive system. When one part of the system is changed or removed, the whole system is affected. The death of a child challenges the systemic balance of the family.

The child who died played various roles in the family and had different relationships with surviving family members. Each family member will grieve differently because each has had a unique relationship with the deceased and must embark on a personal odyssey through the mourning process and confront what he or she has lost.41 Also, the deceased child performed many tasks within the family. The replacement for each of these tasks will have to be addressed as they arise. These tasks may be concrete, such as doing household chores, or they may be abstract, such as having been the son who was wanted and was finally born.

The grief of grandparents is also a part of the family picture, though it is sometimes overlooked.42 Often grandparents experience anger and disappointment (p.196) over the child's illness and death and may point the finger of blame at the parents. Occasionally, these blame scenarios are switched when the mother of a dying child is disappointed by her own mother's inability to understand and offer emotional assistance.

It is important that the needs of the siblings be addressed, as well as those of the parents and grandparents. The surviving siblings may feel left out as a result of the attention that is or was being paid to the terminally ill or deceased brother or sister. Siblings may have been told or otherwise perceived that their own needs came after those of the child who was dying. Unless this belief is changed, it could have long-lasting effects on the sibling's self-esteem.20

Surviving brothers and sisters may also experience guilt. The etiology of this guilt is as varied as the personality and developmental level of the sibling. It may be due to a sense of relief at the death because their own needs were overlooked in favor of those of the deceased. Guilt may also arise as a result of sibling rivalries or arguments prior to the illness and/or death. There may be a form of survivor guilt if the dead sibling was treated as a very special child and received more attention than the surviving brother or sister. This could lead to the belief that the deceased was more worthy of life and that the wrong child died.

Magical thinking may also play a part in the grieving process of younger children. Magical thinking is the belief held by children that they somehow caused or helped bring about the death by their thoughts or unrelated actions prior to the death. Magical thinking may also be present in a different form after the death. A child may believe that the deceased may be brought back by strong wishing or even by certain behaviors.

Unspoken family rules are often established to dictate if, how, and when grief may be expressed. But feelings that are not expressed do not vanish. They become part of the underlying system that governs individual choices and behaviors. In order for the family to successfully adjust to life without the lost child, the new family circumstances must be investigated and discussed.

Virginia Satir43 has described the ghosts that may be part of a family system:

I believe that anyone who has ever been part of a family system leaves a definite impact. A departed person is often very much alive in the memories of those left behind… If the departure has not been accepted, for whatever reason, the ghost is still very much around and can disrupt the current scene.

The manner in which children grieve is often learned from their parents. Children of parents who do not express emotions will tend to be unexpressive. Often, children are excluded from discussion or information about grief or the dying and death of the sibling. This exclusion may be done in an attempt to protect the surviving children from the pain of the grief. Whatever the reason, this protection may make it more difficult for the (p.197) child to grieve. Accurate information is vital to the successful resolution of the grief process. Children do not have the same opportunity as adults to gather information or seek a sympathetic person. Usually the only source of information and sympathy for the child is the family.44 If information is not forthcoming, the child might imagine circumstances, which may be worse than reality, to fill in the void. Family grief counseling should include information and education for the parents so that they might assist the surviving children with their grief. As children mature and develop, they need to reprocess the loss. It is important that the parents continue to provide support and information to them.

Bereavement Support Groups

Individuals who are reluctant to seek individual, couples, or family counseling may be more inclined to attend bereavement support groups. Support groups may seem less intimidating than counseling or therapy and are more likely to appeal to a wider range of people.

There are a number of approaches that may be taken when planning a bereavement support group. These depend on the needs of the population and the personnel available to conduct the groups. Groups may be ongoing or closed-ended. They may meet once a week for 6 or 8 weeks, once a month, or indefinitely. They may include a specified topic of discussion, a presentation, or whatever the group decides on. They may be closed or open to new participants. They may include social functions or be limited to grief-related discussion. They may combine any of these features. It is important to be flexible and to try different approaches in order to meet the needs of those attending.

The following topics are appropriate for bereavement support groups: symptoms of normal grief, changing roles and identities, guilt and anger, stress management, or getting through holidays. Other topics specific to parental grief may be discussed, such as parenting the surviving children while grieving, helping the other children with their grief, dealing with spiritual issues that arise as the result of surviving one's child, and having other children.45

The most beneficial component of a support group is contact with others who have a clear understanding of what one is experiencing. To hear the stories of others who are experiencing the same symptoms is often reassuring to grieving parents. When parents hear that they are not the only ones to experience the unique painful reactions of parental grief, there is less of a tendency to judge their reaction as abnormal. This tends to reduce the anxiety and fear that accompanies new painful experiences and lead to increased feeling of relief and normalcy.

(p.198) Videka-Sherman and Lieberman46 looked at the effects of participation of bereaved parents in self-help group and found that such participation changed the parents' attitudes about bereavement but did not have a major impact on the parents' mental health or on the marital functioning of the couple. Those parents who experience chronic symptoms such as anxiety or depression would be better served by seeking out someone competent for grief therapy. Similarly, couples or families who experience serious dysfunction after a death would be good candidates for couples or family therapy.

Social Support Groups

These groups are a very important aspect of bereavement services. Social get-togethers, such as luncheons, potluck suppers, picnics, and other outings, provide a means for bereaved parents to meet each other. These settings are not perceived to be as threatening as support groups or counseling sessions. Although social get-togethers are not therapy sessions, they can be therapeutic. Parents meet others who have experienced similar losses, hear about coping techniques, and may feel less anguished because they are no longer the only ones they know who have suffered such a tragedy.

Social support groups provide an excellent opportunity for grieving parents to “compare notes” and normalize painful experiences. for instance, at one get-together at a popular restaurant, one of the bereaved asked another how she felt when she saw her deceased child in the coffin for the first time. This is not the usual luncheon chatter, but it was important for the two to share their perceptions, feelings, and thoughts about this very difficult experience.

Conclusion

The death of a child is one of the most difficult losses to grieve. The losses continue to present themselves long after the pain of other deaths might have subsided. Graduations, marriages, births, children playing, or any other event can serve as a reminder of what might have been if the child had survived and bring about renewed pain.

One grieving mother, speaking of her grief, said, “I know that this will go on for a long time, but I look forward to the day when the pain will not be so intense. I know that life will never be the same as it would have been if the baby had survived, but I hope to one day make some sense of all of this and perhaps even find some meaning for what we are going through.” By addressing the pain, seeking to feel understood and not judged, negotiating painful events, and perhaps discovering some meaning in the loss, grieving parents may find life returning to normal. Of course, this does not mean “normal” as it was or would have been, but a new kind of normalcy.

(p.199) Notes

(1.) World Health Report, 1999. Making a Difference. Geneva: World Health Organization

(2.) Schiff HS. The Bereaved Parent. New York: Crown; 1977

(3.) Miles MS, Demi AS. Toward the development of a theory of bereavement guilt: sources of guilt in bereaved parents. Omega 1983; 84:14:299–314

(4.) Littlewood JL, Cramer D, Hoekstra J, Humphrey GB. Parental coping with their child's death. Couns Psychol Q 1991; 4(2–3):135–141

(5.) Gilbert KR. Interactive grief and coping in the marital dyad. Death Stud 1989; 13:605–626

(6.) Kamm S, Vandenberg B. Grief communication, grief reactions and marital satisfaction in bereaved parents. Death Stud 2001; 25:569–582

(7.) Sidmore KV. Parental bereavement: levels of grief as affected by gender issues. Omega 1999; 40:351–374

(8.) Cook JA. Dad's double binds: rethinking father's bereavement from a men's studies perspective. J Contemp Ethnogr 1988; 17:285–308

(9.) Oliver L. Effects of a child's death on the marital relationship. Omega 1999:39:197–227

(10.) Hagenmeister A, Rosenblatt P. Grief and the sexual relationship of couples who have experienced a child's death. Death Stud 1997; 21:231–252

(11.) Johnson S. Sexual intimacy and replacement children after the death of a child. Omega 1984–85; 15:109–118

(12.) Najiman J, Vance J, Boyle F, Embleton G, Foster B, Thearle J. The impact of child death on marital adjustment. Soc Sci Med 1993; 37:1005–1010

(13.) Klass D. Marriage and divorce among bereaved parents in a self-help group. Omega 1986–87; 17:237–249

(14.) Schwab R. Effects of a child's death on the marital relationship: a preliminary study. Death Stud 1992; 16(2):141–154

(15.) Reid M. Joshua. Life after death: the replacement child. J Child Psychother 1992; 18(2):109–138

(16.) Legg C, Sherick I. The replacement child. A developmental tragedy. Child Psychiatry Hum Dev 1976; 7:113–126

(17.) Pozanaski EO. The replacement child: a saga of unresolved parental grief. J Pediatr 1972; 81:1190–1193

(18.) Cain AC, Cain BS. On replacing a child. J Am Acad Child Psychiatrists 1964; 3:443–456

(19.) Klass D. Parental Grief: Solace and Resolution. New York: Springer, 1988

(20.) Worden JW, Davies B, McCown D. Comparing parent loss with sibling loss. Death Stud 2000; 23:1–15

(21.) Worden JW. Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner, 3rd ed. New York: Springer, 2001

(22.) Spinetta J, Swarner J, Sheposh J. Effective parental coping following the death of a child from cancer. J Pediatr Psychol 1981; 6:251–263

(23.) Segal S, Fletcher M, Meekison WG. Survey of bereaved parents. CMAJ 1986; 134:38–42

(24.) Worden JW. Towards an appropriate death. In: Rando T, ed. Clinical Dimensions of Anticipatory Mourning. Champaign, IL: Research Press, 2000. pp. 267–277

(25.) Jiong L, Laursen T, Precht D, Olsen J, Mortensen P. Hospitalization for mental illness among parents after the death of a child. N Engl J Med 2005:352:1190–1196

(p.200) (26.) Hazzard A, Weston J, Gutterres C. After a child's death: factors related to parental bereavement. J Dev Behav Pediatr 1992; 13:24–30

(27.) Brabant S, Forsyth C, McFarlain G. Life after the death of a child: initial and long- term support from others. Omega 1995; 31:67–85

(28.) Martinson I, Lee H, Kim S. Culturally based interventions for families whose child dies. Illness Crises and Loss 2000; 8:17–31

(29.) Drenovsky CK. Anger and the desire for retribution among bereaved parents. Omega 1994; 29:303–312

(30.) Miles MS, Demi AS. A comparison of guilt in bereaved parents whose children died by suicide, accident, or chronic disease. Omega 1991–1992; 24:203–215

(31.) Wheeler I. Parental bereavement: the crisis of meaning. Death Stud 2001; 25:51–66

(32.) Gilbert K. Religion as a resource for bereaved parents. J Relig Health 1992; 1992:31:19–31

(33.) Miles MS, Crandall EKB. The search for meaning and its potential for affecting growth in bereaved parents. Health Values 1983; 7:19–21

(34.) Sormanti M, August J. Parental bereavement: spiritual connections with deceased children. Am J Orthopsychiatry 1997; 67(3):460–469

(35.) Klass D. Solace and immortality: bereaved parents' continuing bond with their children. Death Stud 1993; 17(4):343–368

(36.) Romanoff BD. When a child died: special considerations for providing mental health counseling for bereaved parents. J Ment Health Counsel 1993; 15(4):384–393

(37.) Alexy WD. Dimensions of psychological counseling that facilitates the growing process of bereaved parents. J Counsel Psychol 1982; 29:498–507

(38.) Murphy SA, Aroian K, Baugher RJ. A theory-based preventive intervention program for bereaved parents whose children have died in accidents. J Trauma Stress 1989; 2:319–334

(39.) Videka-Sherman L. Coping with the death of a child: a study over time. Am J Orthopsychiatry 1982; 52:688–698

(40.) Greenberg L, Johnson S. Emotionally Focused Therapy for Couples. New York: Guilford Press, 1988

(41.) Rubin S. A two-track model of bereavement: theory and application in research. Am J Orthopsychiatry 1981; 51:101–109

(42.) Ponzetti JJ, Hohnson MA. The forgotten grievers: grandparents' reactions to the death of grandchildren. Death Stud 1991; 15:157–167

(43.) Satir V. The New Peoplemaking. Mountain View, CA: Science and Behavior Books; 1988

(44.) Bowlby J. Attachment and Loss, Vol. III. Loss, Sadness, and Depression. New York: Basic Books; 1980

(45.) Berti G, Berti AS. When an offspring dies: logotherapy in bereavement groups. International Forum for Logotherapy 1994; 17(2):65–69

(46.) Videka-Sherman L, Lieberman M. The effects of self-help and psychotherapy intervention on child loss: the limits of recovery. Am J Orthopsychiatry 1985; 55:70–82

Notes:

(1.) World Health Report, 1999. Making a Difference. Geneva: World Health Organization

(2.) Schiff HS. The Bereaved Parent. New York: Crown; 1977

(3.) Miles MS, Demi AS. Toward the development of a theory of bereavement guilt: sources of guilt in bereaved parents. Omega 1983; 84:14:299–314

(4.) Littlewood JL, Cramer D, Hoekstra J, Humphrey GB. Parental coping with their child's death. Couns Psychol Q 1991; 4(2–3):135–141

(5.) Gilbert KR. Interactive grief and coping in the marital dyad. Death Stud 1989; 13:605–626

(6.) Kamm S, Vandenberg B. Grief communication, grief reactions and marital satisfaction in bereaved parents. Death Stud 2001; 25:569–582

(7.) Sidmore KV. Parental bereavement: levels of grief as affected by gender issues. Omega 1999; 40:351–374

(8.) Cook JA. Dad's double binds: rethinking father's bereavement from a men's studies perspective. J Contemp Ethnogr 1988; 17:285–308

(9.) Oliver L. Effects of a child's death on the marital relationship. Omega 1999:39:197–227

(10.) Hagenmeister A, Rosenblatt P. Grief and the sexual relationship of couples who have experienced a child's death. Death Stud 1997; 21:231–252

(11.) Johnson S. Sexual intimacy and replacement children after the death of a child. Omega 1984–85; 15:109–118

(12.) Najiman J, Vance J, Boyle F, Embleton G, Foster B, Thearle J. The impact of child death on marital adjustment. Soc Sci Med 1993; 37:1005–1010

(13.) Klass D. Marriage and divorce among bereaved parents in a self-help group. Omega 1986–87; 17:237–249

(14.) Schwab R. Effects of a child's death on the marital relationship: a preliminary study. Death Stud 1992; 16(2):141–154

(15.) Reid M. Joshua. Life after death: the replacement child. J Child Psychother 1992; 18(2):109–138

(16.) Legg C, Sherick I. The replacement child. A developmental tragedy. Child Psychiatry Hum Dev 1976; 7:113–126

(17.) Pozanaski EO. The replacement child: a saga of unresolved parental grief. J Pediatr 1972; 81:1190–1193

(18.) Cain AC, Cain BS. On replacing a child. J Am Acad Child Psychiatrists 1964; 3:443–456

(19.) Klass D. Parental Grief: Solace and Resolution. New York: Springer, 1988

(20.) Worden JW, Davies B, McCown D. Comparing parent loss with sibling loss. Death Stud 2000; 23:1–15

(21.) Worden JW. Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner, 3rd ed. New York: Springer, 2001

(22.) Spinetta J, Swarner J, Sheposh J. Effective parental coping following the death of a child from cancer. J Pediatr Psychol 1981; 6:251–263

(23.) Segal S, Fletcher M, Meekison WG. Survey of bereaved parents. CMAJ 1986; 134:38–42

(24.) Worden JW. Towards an appropriate death. In: Rando T, ed. Clinical Dimensions of Anticipatory Mourning. Champaign, IL: Research Press, 2000. pp. 267–277

(25.) Jiong L, Laursen T, Precht D, Olsen J, Mortensen P. Hospitalization for mental illness among parents after the death of a child. N Engl J Med 2005:352:1190–1196

(p.200) (26.) Hazzard A, Weston J, Gutterres C. After a child's death: factors related to parental bereavement. J Dev Behav Pediatr 1992; 13:24–30

(27.) Brabant S, Forsyth C, McFarlain G. Life after the death of a child: initial and long- term support from others. Omega 1995; 31:67–85

(28.) Martinson I, Lee H, Kim S. Culturally based interventions for families whose child dies. Illness Crises and Loss 2000; 8:17–31

(29.) Drenovsky CK. Anger and the desire for retribution among bereaved parents. Omega 1994; 29:303–312

(30.) Miles MS, Demi AS. A comparison of guilt in bereaved parents whose children died by suicide, accident, or chronic disease. Omega 1991–1992; 24:203–215

(31.) Wheeler I. Parental bereavement: the crisis of meaning. Death Stud 2001; 25:51–66

(32.) Gilbert K. Religion as a resource for bereaved parents. J Relig Health 1992; 1992:31:19–31

(33.) Miles MS, Crandall EKB. The search for meaning and its potential for affecting growth in bereaved parents. Health Values 1983; 7:19–21

(34.) Sormanti M, August J. Parental bereavement: spiritual connections with deceased children. Am J Orthopsychiatry 1997; 67(3):460–469

(35.) Klass D. Solace and immortality: bereaved parents' continuing bond with their children. Death Stud 1993; 17(4):343–368

(36.) Romanoff BD. When a child died: special considerations for providing mental health counseling for bereaved parents. J Ment Health Counsel 1993; 15(4):384–393

(37.) Alexy WD. Dimensions of psychological counseling that facilitates the growing process of bereaved parents. J Counsel Psychol 1982; 29:498–507

(38.) Murphy SA, Aroian K, Baugher RJ. A theory-based preventive intervention program for bereaved parents whose children have died in accidents. J Trauma Stress 1989; 2:319–334

(39.) Videka-Sherman L. Coping with the death of a child: a study over time. Am J Orthopsychiatry 1982; 52:688–698

(40.) Greenberg L, Johnson S. Emotionally Focused Therapy for Couples. New York: Guilford Press, 1988

(41.) Rubin S. A two-track model of bereavement: theory and application in research. Am J Orthopsychiatry 1981; 51:101–109

(42.) Ponzetti JJ, Hohnson MA. The forgotten grievers: grandparents' reactions to the death of grandchildren. Death Stud 1991; 15:157–167

(43.) Satir V. The New Peoplemaking. Mountain View, CA: Science and Behavior Books; 1988

(44.) Bowlby J. Attachment and Loss, Vol. III. Loss, Sadness, and Depression. New York: Basic Books; 1980

(45.) Berti G, Berti AS. When an offspring dies: logotherapy in bereavement groups. International Forum for Logotherapy 1994; 17(2):65–69

(46.) Videka-Sherman L, Lieberman M. The effects of self-help and psychotherapy intervention on child loss: the limits of recovery. Am J Orthopsychiatry 1985; 55:70–82