Talking to Your Child’s Cancer Care Team

Many healthcare professionals will be involved in caring for your child while they receive cancer treatment. Good communication and teamwork between you, your child, and the cancer care team is crucial.

Know who to talk to about specific issues or concerns. Clear communication with the cancer care team will help them understand your needs.

Who is on the cancer care team?

Your child’s cancer care team includes experts in treating children with cancer. These specialists understand the unique needs of children with cancer and their families. They work together to provide support and care throughout the cancer journey.

This team can include:

• Pediatric oncologists: Doctors who use medicines to treat children with cancer.
• Pediatric surgeons: Doctors who perform surgery in children.
• Radiation oncologists: Doctors who use radiation to treat cancer.
• Pediatric oncology nurses: Nurses who specialize in caring for children with cancer.
• Nurse practitioners (NPs) and physician assistants (PAs): Health professionals who are trained to practice medicine alongside doctors.
• Child life specialists: Professionals who help children understand their diagnosis and what to expect during tests and treatment. They might use activities, art, music, or therapy animals to help children stay healthy and happy.
• Physical or occupational therapists: Professionals that can help children maintain or regain physical function during treatment, especially after surgery or long hospital stays.
• Social workers: Professionals that can support families with emotional, financial, and other stresses and connect them with resources for assistance.
• Dieticians or nutritionists: Professionals that monitor a child’s weight and nutrition to help make sure your child is as healthy as possible during treatment.
• Psychiatrists, psychologists, or counselors: Professionals that can help children and families emotionally cope with the stress of a cancer diagnosis and its treatment.

The team can also include other health professionals depending on your child’s specific needs.

Building trust with your care team through family meetings

Building trust takes time, especially when it involves your child. Tell the cancer care team how much information you want and how you would like updates to be given. Having a family meeting can be another way to build trust. In a family meeting, you can sit down with core members of the cancer care team. This way, you can make sure everyone has the same information. You can ask questions and tell the care team what you need extra help with.

Taking an active role

As a parent or caregiver, you are a valuable member of the care team. You know your child better than anyone. When you bring your experience and knowledge and the cancer care team brings their expertise and skills, together you can create a plan that is best for your child.

These tips can help you communicate effectively and take an active role in your child’s care:

• Give clear, direct, and honest information about your child.
• Keep a notebook or log of hospitalizations, tests, and treatments.
• Keep a list of questions in your notebook and bring it to appointments or the hospital.
• Take notes or bring someone with you to take notes when having important talks with your child’s cancer team.
• Sign a release of information if you want your child’s cancer care team to be able to share medical information with other family members or care facilities.

If communication with the care team is difficult

Most of the time, children with cancer and their families develop a bond with the members of their cancer care team. But sometimes, people may have many strong emotions and there may be conflict. Things may not always go smoothly. Not everyone may get along.

• If you have any worries or doubts about your child’s cancer care or plans, ask if you can discuss them more. Or talk to a member of your care about how to get a second opinion.
• Ask for a family meeting.
• If you are feeling frustrated or disagree with a certain person on the cancer care team, try speaking with them. There might be a misunderstanding on both sides that can be resolved just by having a conversation.
• If you’ve spoken to them and still have concerns, ask another team member how to report your concerns.

Finding and giving the best possible treatment for your child is both your goal and the goal of your cancer care team.