2. CARING STEPS

(B) Dispelling Myths about Children and Grief

Reproduced from the Last Acts web site, www.lastacts.org  or http://www.lastacts.org  Last Acts is a national campaign to engage professionals and the public in improving care at the end of life. 

Dispelling Myths About Children and Grief 
by Laura M. Schmidt 

A mother of two daughters, aged 5 and 7 years, left her job as an accountant and vacationed with the girls during the final summer before she died. As a result, many of the girls' early symptoms of anxiety and depression improved. Their mother subsequently found a therapist for each daughter, and at the final follow-up interview, the girls were functioning at a level that was equal to or better than the level at which they had functioned before the mother's condition was terminal. This mother recognized her husband's limitations in providing consistent nurturing because he worked long hours and was a recovering alcoholic. Thus, she arranged for others to help with their emotional care when she was no longer there. Although these children expressed the sense of loss of the mother they had gotten to know so much better, they had important memories and experiences on which they could build over time. 
                From the book, Healing Children's Grief 

Few people, when faced with the diagnosis of a terminal illness, have the foresight to envision the impact of impending death on their children. Unlike the mother highlighted above, many parents and adult caregivers try to protect a child from feelings of loss and grief. Others may deny the experience, leaving an emotional void that the child will carry into adulthood. As some retrospective studies have found, denying a child the opportunity to grieve can be harmful, with potentially long-lasting effects that continue well into adulthood. However both parents and professionals have struggled to understand how children experience and express their grief so that they can be most helpful. 

Although current estimates say that approximately 1.2 million children in the United States will lose a parent before the age of 15, little research has been conducted on how children actually cope with death at different stages in their development. "We, as a culture, tend to think that children are incapable of grieving," says Grace Christ, DSW, a child bereavement expert at Columbia University in New York City and a Senior Soros Faculty Scholar for the Project on Death in America who recently completed a major study on grief and bereavement among children. "As a society, we feel that, because it is too arduous an experience for them, it is better not to share information or be open about death. An alternative myth is that children recover from loss quickly on their own. Both of these erroneous beliefs have limited our capability to address the topic."

To examine how the death of a parent impacts on a child at different developmental stages, Christ has offered tremendous insights into effectively helping children deal with death. Her research, which has recently been published in the book, Healing Children's Grief, addresses many of the myths that have been applied to children and grief. The second through fourth chapters provide a comprehensive literature survey that includes other pertinent studies and the specific methodology used in this study. The next ten chapters are devoted to each of the five development groups described below. The first gives an intimate account of two families, the second highlights important similarities and differences in the experiences of boys and girls in each group; the factors that helped or hindered their adaptation, and ends by listing recommendations specific for their age group. The last chapter summarizes key similarities and differences between age groups, and ends by emphasizing the importance of long-term prospective studies in clarifying later consequences of the death of a parent. 

The Intervention Study: How do children react to death? How do they deal with their grief? 
In the largest intervention study ever conducted, Christ and colleagues at Memorial Sloan-Kettering Cancer Center in New York City studied 157 children whose parents were cancer patients from 1988 to 1994. "People have talked about the issue of children's grief from a number of clinical perspectives, but systematic descriptions of how their responses vary by developmental status have been limited." says Christ, who was the Center's Director of Social Work at the time of the study. "In addition, previous studies had only evaluated children after their parent died, often years later, and none during the period of illness that led to death." 

For six months before and 14 months after the deaths of their parents, the children, who ranged in age from 3 to 17, and their families received counseling and therapeutic intervention with social workers and other mental health professionals. Christ evaluated the reactions of the children within 5 different age categories: 3-5, 6-8, 9-11, 12-14, 15-17. These age categories were derived by grouping children who had similar cognitive, psychodynamic, and ecological attributes. "What was most surprising," says Christ, "were the distinct differences we found in how children at different developmental levels felt, experienced and expressed their grief. If surviving parents and adults fail to understand and respond to the ways a child experiences grief, says Christ, "the result for both parent and child may be heightened fear, confusion and helplessness."  Learning About Grief: Study Results 

In addition to the importance of development, two common points emerged. "The sense of uncertainty during the period of illness leading to the parent's death produced more of an emotional maelstrom for most children than the immediate period following death," says Christ. "They were deeply affected by the family stress and often imagined and feared utter catastrophe in their own existence after the parent died. This finding suggests that the terminal illness period is an important time for intervention." 

The third common finding was that children work actively after the death to construct an ongoing psychological relationship to the parent who died, a process that generally gives them solace. "It is likely that this relationship changes and evolves over time," says Christ. 

Three-to-five year olds cannot anticipate the loss of a parent and do not immediately understand that the parent will never return. Their grief behaviors were generally non-specific, manifested by temporary irritability, toileting regression, sleeping with surviving parent, somatic symptoms, nightmares and increased separation anxiety. Once they do accept the finality (about 3-6 months after the death) they want to see the family restored to the way it was in happier times and, therefore, may hope for quick remarriage by the surviving parent. "As the child gets older, there is a more ambivalent reaction to the surviving parent dating," says Christ. "Younger children are so eager for the replacement of their parent's functions and their "whole family" that negative feelings are more easily overcome about the replacement of the parent who died." 

What Can Help: Set aside regular time to talk with the child about the parent who died, recalling pleasurable activities. Play groups can be helpful even for these young children as a way of providing a language for discussing the loss and gaining a sense that they are not the only children who have experienced loss. Parents often described how their children's communication with them improved and their anxiety was reduced after participation in such groups. 

Six-to-eight year olds generally understood death's finality when it occurred. However, they struggled with misunderstandings of the situation based on magical thinking and their focus on themselves as the cause when bad things happened. They put together events that did not belong together. For example, one seven-year-old girl thought she had killed her mother because she prayed for an end to her pain the night before she died. Incidences of crying and sadness among children in this age group were sporadic. The children were able to overcome these feelings and quickly return to recreational activities. Other grief behaviors emphasized happier times through displaying pictures of the parent and wearing deceased parental belongings. Their mourning, often characterized by such "joyful reminiscence" was hard for grieving adults to hear. Although they did not have inclinations towards suicide, many children this age spoke of wanting to die to be with the deceased parent. Most felt comforted by speaking with the dead parent, and were convinced the parent watched and cared for them from heaven. 

What Can Help: Encourage children to discuss their understanding about the death and surrounding events in order to provide clarification and relieve guilt. Resonate with their sadness, anger, and disappointment. Encourage rituals, such as going to the cemetery and observing father's or mother's day. Model moderate expressions of grief, but not the full intensity of adult grief. 

For children ages nine to 11, providing information was a key factor in helping the young person accept death. They need to know as much as they can about the illness or death as a way to bring more control to the experience. Without these facts, they can become overwhelmed by feelings they are unable to express. Both mothers and fathers found boys and girls in this group easier to understand and support than younger children. Disconcerting to parents was the children's fear of intense emotional feelings and their reluctance to express them. Grief behaviors incorporate a strong need for intellectual understanding and avoidance of feelings. In school some wrote reports about cancer, about treatments, even about euthanasia. 

What Can Help: Regularly provide clear concrete information about the illness and death of the parent. Help the child balance their fear of strong emotion with encouragement of appropriate reminiscence. Use formal family reminiscence to encourage children to express feelings they avoid in informal discussion. 

Because children ages 12 to 14 are beginning to emotionally distance themselves from the family and they can become enraged and very frightened when they realize a parent is dying. Their normal intense focus on themselves at this age can become exaggerated to the point of harshly excluding others' feelings. Intolerant of strong emotions, both boys and girls were also avoidant of information about the illness and death that might arouse emotion, even with their peers. For this age group, grief was very private ("I cry in my room, alone."). Contrary to this were the reactions of adolescents whose parents were recent immigrants. These adolescents more openly shared their grief with parents and interviewers, a behavior that suggests the important role of culture in shaping grief responses. Grief responses included a strong 'sense of presence' of the parent who died and obvious efforts to identify with them. Dreams of them were often freely expressed.

 What Can Help: Set appropriate limits on acting out behaviors and reduce high levels of family conflict. Provide formal reminiscence experiences. Honor adolescents' need for adequate time with peers. 

Older teenagers, ages 15-17, begin to describe the intense sense of loss and emptiness that adults feel after the death of a spouse. While the grief experienced by older teenagers was close to the adult experience, the mourning period did not last as long. Youth in this age group recognized the impact of the death not only on their own personal life in the future, but also expressed concern about the future of their family. They mourned more complex attributes of the parent than younger peers and thought in specific ways about what the parent who died expected of them and how they might fulfill his or her dreams. Whereas parents were concerned that 9-11 and 12-14 year old children were not grieving, parents of 15-17 year old children were more likely to be concerned about the intensity of the grief. Grief behaviors included sleeping problems, waking early, and inability to concentrate in school and sports activities. 

What Can Help: Individual counseling is sometimes more acceptable than group participation. Develop activities to encourage the youth's self-confidence and independence. 

Key Conclusions 
Contrary to myth, the study found that most children have the resilience to survive the death of a parent. "We found that 83 percent of the children had returned to normal functioning, in their schoolwork, within their families, psychologically and emotionally, a little more than a year after their parent died," says Christ. "Although the children's depression, anxiety and self-esteem scores were significantly elevated in the pre-death period, they returned to normal levels within 14 months after the parent's death." One key reason for this return to normalcy is the role of adults in supporting and nurturing the child during the terminal illness and bereavement phases. "Having adults who respect and respond to their grief is an important factor if a child is to return to normal functioning after a parent's death," says Christ. "Grandparents, teachers, coaches, other adults and peers can be a wonderful added resource to help children." 

Christ plans to continue her research and focus on the long-term study of these children. The study was supported in part by grants from the National Institute of Mental Health, the American Cancer Society, the Van Ameringen Foundation, the Society of Memorial Sloan-Kettering Cancer Center, the American Cancer Society, and The Soros Foundation's Project on Death in America. For more information, contact Grace H. Christ, DSW, at Columbia University School of Social Work, 622 West 113th Street, New York, New York 10025. To view excerpts from the book, visit the author's website at http://childrensgrief.com This article was posted on 08/22/2000 Contact: Laura Schmidt 301-528-4255