Child Development and Child Life
Arriving at the hospital, parents often find themselves in a situation that they never thought possible. Many parents tell us that they feel overwhelmed and uncertain about how they will meet the responsibilities as the parents of an ill child. At St. Jude, there are many people on staff, including child life specialists, who care for and provide support to patients and their families. Child Life Specialists are professionals with a clinical background in child development who are trained to help children and teens adjust to hospitalization and their illness. They work with all patients, siblings, and parents to offer explanations about diagnosis, tests, and procedures in a way designed for children and teens to understand.
Child Life Specialists make the hospital a less intimidating place through the use of play and preparation. They provide opportunities to meet other children and teens in similar situations, encourage the expression of feelings, and promote normal growth and development by using playrooms, the teen room, and individual bedside activities. Child Life Specialists are also here to help support you in your search for ways to help your children cope.
Simple ways to support your child
- Tell all your children about the illness and answer questions in honest and simple terms (diagnostic teaching link)
- Recognize accomplishments (getting through a difficult procedure, waiting patiently and taking pills, etc.) with verbal praise
- Let your child know which family member will be with him during treatment
- Continue to set rules and limits to continue routines and give a sense of security
- Give permission to play with no interruptions whenever possible
- Let him control his play
- Provide choices when possible
- Include your child in packing his favorite toys or items (coloring books, cards, GameBoy and walkman, for example) that bring comfort or could be used as a distraction while waiting for appointments
- Allow them to participate in treatment
Reactions of Brothers and Sisters
Once a child or teen is diagnosed with an illness, it affects the entire family, including brothers and sisters. Siblings of a St. Jude patient can experience extended separation from a parent or the patient. They also may have to cope with the unfamiliar hospital setting and changes in routines at home. Because of these changes, it is normal for you to see siblings acting differently. During this time, sibling behaviors may include being jealous, “clingy,” demanding, or introverted. Each sibling response to stress is unique, but all need your understanding and reassurance. These changes in behavior are usually not permanent and should improve as the family establishes a new routine.
Brothers and sisters often have unspoken questions and fears when their sibling is first diagnosed. For example, they may not understand the diagnosis or why the patient cannot come home. Siblings commonly wonder if they or the patient could have done something wrong to cause the illness. They might even worry that they can “catch” the illness. They may also be thinking about who will care for them in their caregiver’s absence. Talk about these unspoken fears with your children, and answer their questions honestly and in simple language. This will help to maintain trust and keep the lines of communication open.
If the siblings spend little or no time at the hospital, they might imagine something very different than what is really happening to the patient. At St. Jude, brothers and sisters are encouraged to visit the hospital. Child life specialists can meet with siblings to prepare them for some of the new things they will see. For siblings who are too far away to visit, Child life specialists can assist parents in making those siblings part of the hospital experience. They can give parents materials to send home, such as books, current audio and video recordings, photos, medical play dolls, and personalized letters to explain the patient’s diagnosis.
Ways to support siblings
- Tell them about the patient’s illness honestly, using words they understand.
- Answer questions simply and honestly. Also don’t be afraid to say “I don’t know” (example: If asked, “why did this happen?” it is okay to answer “we don’t know why kids get cancer, no one does but we know there is nothing any of us could have done to have made this happen. The doctors are trying every day to find out why this happens).
- If possible, arrange for them to visit the hospital
- Don’t be afraid to show your own feelings and talk about them (example: Mommy is crying because she is sad that Sissy is sick and wants her to feel better). This models for everyone in the family that feelings don’t have to be hidden and that you can trust and talk to each other.
- Ask how they are feeling. Listen to their feelings. Let them know that it is okay to have these feelings.
- Encourage siblings to express their feelings through talking with a person they trust and other expressive activities suggested by your child life specialist.
- Exchange letters, photos, phone calls, or videos about what the patient and parents are doing while they are away from home.
- Stay aware of activities and events that are important in the sibling’s life and are happening while you are away. This will give you an opportunity to talk to the sibling about the event and they know you are still interested in them even when you can’t be there.
- Positively recognize the child or teen in some way when they have taken on a responsibility or sacrificed something that helps to make this transition smooth for the family in some way.
- Let siblings know who will be taking care of them while you are away
- Talk to the siblings’ school teachers or counselors so they are aware of the stresses at home.
- Talk to your child life specialist about involving your children in sibling programs that celebrate them including sibling star day and several mail based organizations lasting throughout treatment
- When together, plan times for just the two of you to do something special (reading story, playing a game, going on short outing without the patient).