If your child will be treated with a bone marrow or cord blood transplant (also called a BMT), he or she may have many questions. You may want to protect your child from information that you feel may be frightening. But your child will sense your worries. Giving your child the information he or she needs along with a sense of hope will help him or her cope with treatment.
You know your child best. Think about what your child will be able to understand. Tune in to his or her concerns. Your child takes cues from you, so think about how you can convey hopefulness along with the facts. Talking openly and honestly with your child about his or her illness and the transplant process is important so that your child:
- Can trust you and rely on you for answers and support.
- Has words to describe his or her disease, the transplant process and getting well.
- Has words to describe his or her feelings.
- Will not imagine something worse than the truth — the unknown is often scarier than reality.
- Can better cope with and be more willing to cooperate with treatment.
- Can get answers to questions and talk about fears.
What to tell your child about transplant
How much your child wants to know and can grasp will depend on age, development and personality. As you talk, ask your child questions to see if he or she understands what you are saying. You don't need to cover everything at once. Answer your child's questions honestly and supportively as they come up. If you need help, your transplant center child life specialist, psychologist or social worker can give you resources and even help you talk with your child. Some things you could talk about include:
- The reason for a transplant — To help make your child healthy. Reassure your child that he or she did nothing to cause his or her disease and treatment is not a punishment.
- How a transplant works.
If your child is young, you may want to use a story to explain transplant. Make up a story that your child can relate to. For example: "Your body is like a garden. If the dirt in the garden is sick, seeds won't grow. The gardener removes the sick dirt and puts in healthy dirt so beautiful flowers can grow. Your bone marrow is like the dirt. Doctors will use medicines, chemotherapy and radiation to take away your sick marrow and make room for the donor's healthy marrow — the good dirt. Once you get the healthy marrow, your blood cells will grow, making you healthy so you can feel good." A child interested in cars might see the treatment as a car repair: take out the broken parts, put in new parts, and the car runs well again.
- The hospital stay — How long your child may be in the hospital, who will be with him or her, what he or she can bring from home, who can visit and things he or she can do there. A hospital tour is helpful.
- What to expect from treatment — For example, blood tests, feeling sick for a while. Be honest about whether a procedure might hurt. Some children cope better when they are told about procedures just before they happen. Other children need to know ahead of time so they can feel prepared.
Depending on your child's age, include him or her when you talk with doctors about diagnosis and treatment. Encourage older children and teenagers to bring their own questions to the doctors.You may also want to ask your child if he or she wants time to talk with doctors alone.
Other ways to communicate
For younger children, you may want to use stories, books, pictures, videos or puppets to help your child learn what to expect. Children do not always know how to talk about their feelings. They may be afraid to ask questions. Spend time with your child and pay attention to what he or she may express through behavior, play or artwork. If your child shows signs of trouble coping, a clinical social worker, child life specialist or child psychologist can be helpful.
Informed consent and assent
Before a transplant, you will be asked to sign an informed consent for your child's treatment (for children under age 18). Informed consent means that you have been told about your child's treatment plan, understand the possible risks and benefits, and agree to begin treatment. This is the legal agreement to treatment.
Older children and teenagers can be active partners in learning about their disease and making treatment choices. Therefore, many hospitals ask for the informed assent of children age 8 and older. Informed assent means that your child is told about what will happen during a transplant and agrees to the plan. The informed assent process involves your child in decisions about his or her own treatment in a way that is appropriate to age. It is a good opportunity to talk about your child's questions. You and your child's doctor can build stronger relationships with your child by listening to his or her concerns.
For help talking with your child about transplant, your hospital social worker or child life specialist can offer advice and materials suitable to your child's age. Other resources include:
K. Scott Baker, M.D., Director, Pediatric Blood and Marrow Transplantation and Survivorship Programs, Fred Hutchinson Cancer Research Center, Seattle, Wash.
Nancy J. Bunin, M.D., Director, Blood and Marrow Transplantation, Children’s Hospital of Philadelphia, Philadelphia, Pa.
Eva C. Guinan, M.D., Associate Professor of Pediatrics, Harvard Medical School, Dana-Farber/Children’s Hospital, Boston, Mass.
Mary Jo Kupst, Ph.D., Professor of Pediatrics, Medical College of Wisconsin; Director, Program in Pediatric Psychology, Milwaukee, Wis.