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Children who are diagnosed with a life-threatening illness frequently have their world turned upside down, and health care professionals and parents understand that; therefore, emotional issues as well as physical issues are addressed during treatment. Yet, the patient’s siblings can be overlooked even though they have just as many reactions and adjustments as the sick child, says Hallie Bloom, MS, MA, CCLS, director of Child Life at St. Jude Children’s Research Hospital in Memphis, TN.
Siblings of a sick child who are left with family and neighbors while Mom and Dad spend time at the hospital can experience feelings of abandonment. Parents rarely include siblings, especially if they are young, in discussions about the illness and treatment of their brother or sister, so they may feel left out.
Often, they think that their parents may not love them anymore because they don’t spend as much time with them as before. Sometimes they develop psychosomatic illnesses to see if Mom and Dad will take care of them as they do their sick brother or sister. Young children may think they did something to cause their brother or sister to become ill.
"Children are very egocentric; so life centers around them, and this is a major disruption in their life," says Bloom. It’s important that children gain an understanding of all that is going on, including the illness, so that they don’t live in fear of it thinking that it might happen to them or that they did something wrong. It’s also important that they find ways to become involved so that they have a role, she explains.
With their attention on the sick child, parents often do not notice behavior changes in their other children or they react with disdain demanding that the well child explain how they could be acting that way when his or her brother or sister is so sick.
That’s why staff at St. Jude Children’s Research Hospital give parents material that covers behavior changes they might look for in their children, how to contact Child Life if they notice these changes, and how that department works with the siblings of sick children.
It’s important to help parents understand the reactions siblings have when a brother or sister is extremely ill, to educate them about how to handle behavior changes in their children, and to teach them how to incorporate their children into the things that are going on, such as discussions about the illness, so that they feel a part of it, says Bloom.
At the hospital, siblings can join their brother or sister in group therapeutic play activity, or parents can schedule individual appointments with a Child Life specialist for the child. During medical play, children use dolls and real equipment and needles to work through hospital experiences and learn what is going on during treatment.
Child Life specialists do a lot of expressive play so that children can explain how they are feeling. "A lot of children don’t have the verbal skills to tell you how they feel, nor do they really understand the feelings they are having. It may be feelings they are having for the very first time but they are able to show you that through their play," says Bloom.
Teens often need someone that they can talk openly with about their feelings and life issues. They may have been ready to leave for college when a sibling was diagnosed with cancer and they had to stay home and help.
It’s good to let children know that their feelings are OK. They may be very angry yet are told that they have no right to be mad because they aren’t going through the illness. "Being angry is OK; it is what they do with that anger that counts, so we teach them coping mechanisms and how to express themselves appropriately," says Bloom.
Helping children overcome their fear of hospitals and the medical environment also is important. To familiarize children with this setting, staff developed two activity books, one for the patient and one for a sibling. The coloring books give a brief introduction to what happens in the hospital and why equipment is used the way it is. Child life specialists also work with children individually to help them become familiar and comfortable with hospital surroundings.
What’s important is to include the children and help them understand the situation. "Once they are included, it gives them a little more peace and they are able to continue with their daily activities knowing that they aren’t going to be left out," says Bloom.
For more information on addressing the concerns of patients’ siblings during an illness, contact: