Don't Let Child's Illness Define the Family
Physical symptoms are only part of the challenge families face when a child has a chronic illness, such as asthma, eczema, or food allergies. The time and attention demanded by care for the child, anxiety about potential flare-ups of the disease, and embarrassment about the disease can all take an emotional toll on both the patients and their families.
"Emotional distress for the entire family is a common, but under appreciated, consequence of pediatric illness," said Dr. Bruce Bender, PhD, head of pediatric behavioral health at National Jewish. "It is all too easy to let one child's illness dominate the entire family's life. We try to teach families strategies that will help them avoid defining their lives solely in terms of the child's illness."
Dr. Bender offers a few tips for retaining a normal family life in the face of a chronic illness.
Focus on normal elements of childhood. It is easy to focus too much on a child's illness, reinforcing the concept that the illness defines the child and the family. In dinner conversations, while watching television, or at other times the family gets together, try to talk about everyday elements of childhood, from school and friends to birthday parties and toys.
Beware of transmitting anxiety to child. Some illnesses, such as asthma and food allergies, can involve acute, even life-threatening episodes. As a result, many parents experience lots of anxiety about their child. Try not to transmit this anxiety to children. It is certainly helpful to listen to a child's concerns, and to try to reassure them. However, parents should try not to talk too much about their own fears. Anxiety can be a normal and even helpful response during an acute crisis, but at other times it can be particularly destructive.
Medical hour. Take an hour once a week to devote specifically to management of the disease. Go over medications, schedules, lifestyle adjustments, doctors' appointments and any other issues either a parent or child thinks is important. This can allow the family to address important issues in a specific time period, thus reducing the chances that these discussions dominate family life.
Reserve time for siblings. Set aside at least an hour a week to devote specifically to healthy siblings. Caring for a chronically ill child can demand so much time, that healthy siblings often feel ignored, and can become resentful. A parent's attention is the most valuable commodity. Every child in the family needs some of it.
"Learning to manage a child's chronic illness, keeping an eye on parent's fears, and focusing on the normal elements of childhood and family life can ease stress and help families cope better with a difficult situation," said Dr. Bender.