How to Talk to Your Child’s Cancer Care Team

Trust and confidence

Confidence comes with knowing that all team members are well trained and experienced in treating cancer in young people, and that the facility meets the highest standards. Information about the education and credentials of all team members should be readily available. The institution’s status and reputation can be researched quickly. No matter what you know about training, it will take time to form relationships and build trust with the team.

Two-way communication

Parents are the experts when it comes to their children. It’s important for them to have that expertise recognized, just as it’s important for professionals to have their knowledge and skills recognized. Parents can help team members learn how best to work with their children. On the other hand, health professionals who’ve worked with many children with cancer can often give parents new ideas to try when the old ones don’t work. Good communication comes from mutual respect for what each person brings to the joint effort to give the child with cancer the best possible care.

Because of the emotional impact of a cancer diagnosis, it’s often necessary to repeat things and ask questions more than once. This is normal, and it’s better to do this than have misunderstandings.

Tips for good communication with your health care team

• Communication should be clear, direct, and honest.
• Become a partner and actively take part in your child’s care.
• Keep a notebook or log of hospitalizations, tests, and treatments. This will be very helpful if team members change, and when dealing with things like referrals to specialists and medical bills.
• Many doctors and treatment centers give a printed summary of each visit. .This printout often also lists the medicines your child was prescribed.  If there is something you do not understand, stop and ask about it.
• Sign a release of information if you want certain family members (besides the parents) to be able to talk to the health care team to find out about tests and treatments.
• Develop and expect an attitude of mutual respect and cooperation.
• Give accurate information about your child’s and the family’s health history.
• Keep a list of questions for doctors or other team members.
• Ask for explanations of medical or technical terms you don’t understand.
• Take notes or take someone with you to take notes when having important talks with your child’s cancer team members.
• Let team members know about your doubts or concerns about information given or about requests made of your child.
• Have reasonable expectations about how much time team members can spend with each patient and family. Let them know when you need more time.
• Let team members know what the family and patient prefer when there’s more than one way to give care.
• Try to develop positive relationships with team members.
• Make sure both parents have direct and equal access to doctors and other team members.
• Expect to sometimes have lapses in communication and other problems because of the many experts involved in caring for patients.
• Address confusion, frustrations, or disagreements directly with the team member involved.
• Get help from other team members only if your first efforts to resolve conflicts directly do not work.