Talking to Your Child’s Cancer Care Team

Cancer care for children is complex. Many healthcare professionals will be involved in caring for your child, so open, honest, and clear communication is crucial.

Children with cancer and their families often build strong bonds with the cancer care team. But there still might be times when communication is challenging. Knowing who to talk to about specific issues and how to communicate your frustrations or concerns will help the cancer care team understand your needs.

Who is on the cancer care team?

Your child’s cancer care team includes experts who understand the differences between adult and childhood cancers, as well as the unique needs of children with cancer and their families. They work together to give support and care throughout the cancer journey.

This team usually includes:

• 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.
• Certified Pediatric Oncology Nurses (CPON):  Nurses who specialize in working with pediatric cancer patients and has passed a certification exam.
• Nurse practitioners (NPs) and physician assistants (PAs): Health professionals who are specially trained and licensed to practice medicine alongside doctors.
• Recreational therapists or child life specialists: Health care team members who help kids with activities to stay healthy and happy.

The team can also include many other health professionals. Children’s cancer centers often have psychologists, social workers, nutritionists, rehabilitation and physical therapists, and educators who can support and care for the entire family.

Building trust 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, ask questions, and tell them what you need extra help with.

Taking an active role

As a parent or caregiver, you are an invaluable 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 is difficult

Most of the time, children with cancer and their families develop a bond with the doctors, nurses, and other members of their cancer care team. But sometimes, personalities and styles may clash, and things may not always go smoothly.

• If you have any worries or doubts about your child’s cancer care or plans, ask if you can discuss them more or 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.