Communication Guide

Communication Guide: Sharing Information About Your Child

Learning to communicate with your child's health care providers will help you become an active partner in all choices and be helpful in your child's health care. This involves much more than listening to what the doctor has to say. It also involves learning as much as you can about your child's health issue and asking the doctor to explain anything you don’t understand. Your child’s doctor may be an expert in his/her field, but remember that you are the expert on your child. You are your child’s voice, or advocate, and you can help the doctor know your child and make the best care plan for him or her.
Many parents feel uncomfortable talking with doctors, afraid of asking stupid questions, or of seeming rude by questioning something the doctor wants to do. Most parents find that they get better at speaking up with time. Here are some ideas of positive ways to voice your concerns.

1) Your child's doctor writes a prescription for chewable antibiotics:

Skip this=> "Not the chewables again! He hates those."
Try this instead=> "He's had problems with the chewables in the past. Are there any alternatives?"
You may also ask the doctor to record in your child's file that chewables are not an option. That way, anyone looking at your child's record in the future will also know.

2) You have received a third letter from your health insurance denying payment again for what should be covered:

Skip this=> "Why do you insurance people keep denying this bill? It should have been paid months ago!"
Try this instead=> "I have a bill and a denial in front of me. Can you help me figure out exactly where the problem is?"
By speaking calmly to the person on the other end of the phone, rather than getting angry, you have a better chance of getting help with the problem. Ask your doctor's office staff for help, too—they may even call for you. Sometimes the problem is the doctor's use of the wrong billing code that is not recognized by the insurance company.

3) Your child has just been scheduled to have blood drawn for the second time in one week:

Skip this=> "More tests? This poor child is being treated like a pincushion!"
Try this instead=> "He has had several tests done this week, is this one needed? Can we get any of the information you need from those tests? Or can we combine them with the tests her other doctor has just requested?"
Talk with your doctor's office about scheduling visits and tests together to save travel time. Often the nurse or office staff can be very helpful. And ask your doctor to try to work together with other involved doctors. They may be able to order lab tests in the same visit to reduce tests and time.

4) The doctor has quickly written a prescription for a drug you know is very costly:

Skip this=> "Why do you doctors prescribe such expensive medicine?"
Try this instead=> "I know this is really high priced. Is there a generic brand you could prescribe instead? Or do you have any samples we could take home?"
You can also call your pharmacist for help—sometimes there isn't a generic, but often there are other choices. There are also financial assistance plans for certain medications. Don't be afraid to ask for help.

Making the most of each doctor's visit

Plan ahead - Before you go, think about questions you have for the doctor. Writing your questions down may help you stick to the main issues and not forget during the visit. Bring medication records and any other records of your child's health from other doctors your child has seen. Care Notebook log sheets may help you keep track of the information. Offer your records to the nurse or doctor—that way it easy to make sure that they have right information on their chart.
Ask questions - Ask for handouts or help with anything you don't know understand. Ask questions about treatment, such as the expected benefits and side effects.
Be honest - Make sure the doctor has all the important information about your child, like "He complains of a stomach ache after taking this medicine," or "We can't afford this medicine." There may be other choices for your child.
Test results - Ask how and when you will be told about test results: by phone, by mail? Will you be called only in the case of positive results?
Know the next step - Do you need to make a follow-up appointment to see how your child is doing? Do you know the warning signs to watch for if your child's health worsens?
Keep records - Record information from each visit in your child's health log or Care Notebook. Whether you keep these in a notebook or toss them in a box, keeping your child's records at hand will help you stay on top of things. If your child sees many doctors, a health log will help you keep track of medications and care, and will also help you work with each doctor to coordinate all medications and tests.

Become Part of the Team

Being an active part of your child's health care team is the best way to help your child. Keeping good records and keeping the communications lines open will help the health care team help your child.

Resources

Information & Support

For Parents and Patients

Center for Parent Information and Resources (DOE)
Parent centers in every state provide training to parents of children with disabilities and provide information about special education, transition to adulthood, health care, support groups, local conferences and other federal, state, and local services. See the link for Download a List of Parent Centers across the USA to find the parent center in your state; Department of Education, Office of Special Education.

National Center for Family - Professional Partnerships (F2F HICs)
Family-to-Family Health Information Centers are nonprofit, family-staffed organizations that assist families of children and youth with special health care needs (CYSHCN). Locate state-based F2F HICs, providing support, information, resources, and training.

Authors & Reviewers

Last update/revision: March 2019
Current Authors and Reviewers:
Authors: Gina Pola-Money
Chuck Norlin, MD
Robin Pratt
Reviewers: Tina Persels
Alfred N. Romeo, RN, PhD