Facilitating Adjustment to Catastrophic Illness through Involving Children in Age-Appropriate Education

This article seeks to promote a greater awareness among healthcare providers of the implications for a child and family affected by life-threatening illness. Based on a program developed at an inpatient rehabilitation center, methods are suggested for facilitating familial adjustments by including children in an educational program geared to the child's level of understanding. By developing similar programs in various healthcare settings, children may be better informed and equipped to manage the emotions and familial adjustments brought on by life-threatening illness. A child experiences loss as soon as a parent has a physical change in function which alters the relationship between the child and family. Sudden disability of a parent brought on by stroke or other life-threatening illnesses can have a devastating effect on a child at any age. Families are frequently ill-equipped to deal with the questions and concerns that children have regarding the nature of the illness and course of recovery. Wright and Oliver (1993) in their description of steps toward appropriate grieving stated that children need to accept the loss, experience the pain, and express their sorrow. Children may need assistance to identify and express the wide range of feelings they are experiencing. In the case of death of a significant other, children need encouragement to remember and review their relationship with the loved one. Children may need help in learning to relinquish and say goodbye to what they have lost. This article seeks to promote a greater awareness among healthcare providers of the implications for a child and family affected by life-threatening illness. Methods are suggested for facilitating familial adjustment by including children in an educational program geared to the child's level of understanding. Background According to the National Stroke Association's 1993 statistics 550,000 people in the United States annually will suffer stroke and 400,000 will survive. Of the individuals who survive, the road to recovery can be a long and tedious process involving weeks and even months of intensive rehabilitation. In some rehabilitation settings, family conferences are routinely conducted to inform families of the patient's progress and to provide family teaching. For the most part, however, children have not been a part of this process. According to Sanders, there is compelling evidence to suggest that children are frequently excluded by adults from the grief experience. Adults may feel like they are protecting children or they may be too shocked and grief stricken to realize the children's needs (1995). Bojanowski even refers to children as "the forgotten grievers" in her article which she wrote at age 13 regarding her own grief experience in the loss of her father (1990). Children, however, easily perceive when something very serious has happened to the family. An honest answer is comforting and should foster an atmosphere of open communication (Norris-Sortle, Young, & Williams, 1993). Open communication further reassures the child that there is nothing too threatening to discuss and may assist the child in developing skills essential for coping with the loss (Doka, 1995). According to Doka, keeping information from a child is not only futile, but harmful. It may inhibit the child from seeking support, increase fears and anxieties, reduce trust, and complicate the child's ability to cope or respond to a crisis (1995). For these reasons we need to see these situations through the eyes of the child (Wright and Oliver, 1993). According to Corr, children's comprehension and reaction to illness and loss change as they develop cognitively, behaviorally, socially, physically, and spiritually. Loss and life-threatening illness will affect each form of development (1995). Similarly, the concept of loss and death undergo a continual process of maturation and the way children respond will depend in part on their age and level of cognitive and emotional maturity (Grollman, 1995). …