Childhood Cancer

Childhood Cancer

Planning for procedures

Procedures are needed to make diagnoses, check for spread of disease, give treatments, and monitor responses to treatment. Some procedures are pain-free and easy to tolerate when the parents and child know what to expect. Other procedures can cause both physical and psychological distress, which can be amplified if the child or parents are taken by surprise.

The best way to prepare the child is for parents to prepare themselves, intellectually and emotionally, to provide the support and comfort their child needs during procedures. In most cases, although the procedure itself is non-negotiable, options are available to lessen the pain or stress. Parents need to know what these choices are to be effective advocates for their child.

A family-centered approach works best when planning and implementing procedures. Most children’s hospitals have a child life program. These programs exist to minimize psychological trauma and maintain, as much as possible, normal living patterns for hospitalized children. The American Academy of Pediatrics considers child life programs the standard of care for hospitalized children. As soon as possible after admission, find out whether your hospital has a child life program or an equivalent support team.

Matthew was in sixth grade when he was diagnosed, and he was worried about the surgery for implanting the port. The child life specialist came in and really helped. She showed him what a port looked like; then they explored the pre-op area, the actual surgery room, and post-op. She showed him on a cloth doll exactly where the incision would be and how the scar would look. Then she introduced him to “Fred,” the IV pump. She said that Fred would be going places with him, and that Fred would keep him from getting so many pokes. She told Matthew that he could bring something from home to hang on Fred. Of course, he brought in a really ugly stuffed animal. Throughout treatment, she really helped his fears and my feelings about losing control over my child’s daily life.

Child life specialists or other team members may provide support before and during procedures. They establish relationships with children based on warmth, respect, and empathy. They also communicate with the other members of the treatment team about the psychosocial needs of children and their families.

One way to help child life specialists do their job is to communicate openly with them from the beginning. In particular, it is helpful to share insights about your child’s temperament and history to help the specialist understand how to approach your child.

You can do quite a bit to prepare your child for procedures. Discuss with the child life professional or social worker when and how to prepare for upcoming procedures. Although it may not always be possible, try to schedule procedures so the same person does the same procedure each time. Call ahead to check for unexpected changes to prevent any surprises for your child. Repetition can provide comfort and reassurance to children. Ritual can also be important. A child may prefer a precise sequence of steps or the use of certain cue words to signal the start of a procedure. If staff members know the child and comply with her wishes, the child is usually calmer and more cooperative.

I started giving my 4-year-old daughter 2 days’ notice before procedures. But she began to wake up every day worried that “something bad was going to happen soon.” So we talked it over and decided to look at the calendar together every Sunday to review what would happen that week. She was a much happier child after that.

Parents should have a choice whether or not to be present during a medical procedure. If your child does better when you are not in the room, ask the child life specialist or another member of the treatment team to be present solely to comfort your child. Teens often want to handle the procedure on their own and it is normally best to respect their wishes.

During procedures, a parent’s role is to be supportive and loving. In most cases, the best place to position yourself is at your child’s head, at eye level. Speak calmly and positively to your child. You can tell stories, sing songs, or read a favorite book. It helps to praise your child for good behavior, but don’t reprimand or demean your child if problems occur.

We decided from the very beginning that, even though it’s no fun to have procedures, we were going to make something positive out of it. So we made it a party. We’d bring pizza, popcorn, or ice cream to the hospital. We helped Kristin think of the nurses as her friends. We’d celebrate after a procedure by going out to eat at one of the neat little restaurants near the hospital.

Giving children some control over what happens helps tremendously, but only give choices when they truly exist.

Oncology clinics usually have a special box full of toys or a selection of rewards for children who have had a procedure. It sometimes helps for the child to have a treat to look forward to afterward. Some parents bring a special gift to sneak into the box for their child to find.