Working With Your Child’s Healthcare Team

Learn how to get the information you need, communicate with your child’s healthcare team, and help them do their best work caring for your child.

Be Your Child’s Voice

When your child is first diagnosed with a brain tumor, you may feel overwhelmed by new information. But parents and caregivers are important members of a child’s healthcare team. That team may include doctors, nurses, social workers, child life specialists and others, but you are the expert on your child. Sharing what you know may help your child’s healthcare team make the best plan for treatment and care.

Tips for Communicating With Your Child’s Team

Find a space where you feel comfortable talking. When talking to your child’s doctor or nurse, it’s okay to ask for your child to be taken to another room, especially if your child seems anxious. You may also ask the doctor or nurse to leave your child’s room with you to talk in private.
Write down your questions. It’s easy to forget your questions during a busy doctor’s visit, especially when you are tired or worried. Write down your questions before the visit, and ask them one by one.
Keep asking. Don’t worry about asking the same question multiple times. If you don’t understand an answer, ask the doctor to explain in a different way. If the doctor tries to leave before all your questions are answered, say you have more questions.
Bring a friend. Bring a family member or friend to help you ask questions and write down answers. After the appointment, talk to them about what happened and what you need to do next.
Take notes. Write down what you hear, the answers to your questions, and any steps your child’s team asks you to take next. (You can also ask to record the conversation.)
Learn how your child’s team likes to communicate. Some doctors like to talk by phone, others by email or website portal. Other times, a social worker or nurse will be the best person to talk to. Learning how each team member likes to communicate will help you share information and get answers faster. (Sometimes, you may need to make sure that members of your child’s team communicate with each other.)
Speak up. You are your child’s advocate and voice. Share any concerns you have with your child’s healthcare team. If you don’t feel the team is responding to your concerns, let them know. Remember, you can ask for a second opinion at any time.