Approximately 5-8% of U.S. children will experience parental death; rates are much higher in other parts of the world more directly affected by war, AIDS, and natural disasters (Chapter 36.2). Anticipated deaths due to chronic illness may place a significant strain on a family, with frequent bouts of illness, hospitalization, disruption of normal home life, absence of the ill parent, and perhaps more responsibilities placed on the child. Additional strains include changes in daily routines, financial pressures, and the need to cope with aggressive treatment options.
Children can and should continue to be involved with the sick parent or sibling, but they need to be prepared for what they will see in the home or hospital setting. The stresses that a child will face include visualizing the physical deterioration of the family member, helplessness, and emotional lability. Forewarning the child that the family member may demonstrate physical changes, such as appearing thinner or losing hair will help the child to adjust. These warnings, combined with simple yet specific explanations of the need for equipment such as a nasogastric tube for nutrition, an oxygen mask, or a ventilator, will help lessen the child’s fear. The primary care provider can be of great help in addressing these issues. Children should be honestly informed of what is happening, in language they can understand, allowing them choices, but with parental involvement in decision-making. They should be encouraged, but not forced to see their ill family member. Parents who are caring for a dying spouse or child may be too emotionally depleted to be able to tend to their healthy child’s needs or to continue regular routines. Children of a dying parent may suffer the loss of security and belief in the world as a safe place, and the surviving parent may be inclined to impose his or her own need for support and comfort onto the child. However, the well parent and caring relatives must keep in mind that children need to be allowed to remain children, with appropriate support and attention. Sudden, unexpected deaths lead to more anxiety and fear, because there was no time for preparation and uncertainty as to explanations.