When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
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Appendix E: Bereavement Experiences After the Death of a Child
Appendix E: Bereavement Experiences After the Death of a Child
Pages 553-579
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From page 553... ...
Forewarning is important because according to the Centers for Disease Control and Prevention t8] , about half of child deaths occur during infancy, most with limited preparation time.
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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 t121.
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From page 555... ...
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 t101. 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 t20-231 within 2 years of the death.
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From page 556... ...
Grieving parents evidence anger as part of the normal reaction to the loss of their child t17, 29-331. This may be expressed as intense rage or as chronic irritation and frustration.
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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 t441. 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 t111.
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somatic concerns and dysregulation; (4) psychiatric symptoms including orientation and mental status, PTSD (post traumatic stress disorder)
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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 mode! of care rather than curative treatments.
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From page 560... ...
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 t481.
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From page 561... ...
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.
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From page 562... ...
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.
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, 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 t641.
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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 t20, 214. Siblings themselves describe feeling guilty, anxious, and depressed and parents have noted problems with sleeping, nightmares, anxiety and posttraumatic stress symptoms t22, 23, 67, 684.
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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.
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From page 566... ...
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.
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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 Infant Death 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" t791.
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From page 568... ...
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 t81, 821.
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, 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 t844.
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Families' avoidance of formal and informal support services is thought to reflect, in part, avoidance of traumatic reminders. However, the lack of .
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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 postbereavement outcomes both short and long term, existing knowledge suggests the following interventions.
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From page 572... ...
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; 3.
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From page 573... ...
provide information/consultation about ways to help bereaved siblings to parents, extencleci 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.
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From page 574... ...
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 t4, 1051. Additional research questions include the following: 1.
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9. 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?
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From page 576... ...
Amsel, Predictors of husband and wives' grief reactions following infant death: The role of marital intimacy. DeatI7 Studies, 1996.
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From page 577... ...
et al., Post-traumatic stress in survivors of childhood cancer and mothers: Development and validation of the impact of traumatic stressors interview schedule (ITSIS)
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From page 578... ...
and L Gottlieb, Parental grief reactions and marital intimacy following infant deaths.
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From page 579... ...
101. Lowman, J., Grief intervention and sudden infant death syndrome.
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