Building a Good Partnership With Your Care Team

Good partnerships with the people on your care team are very important for managing a medical condition like CHD, and good communication is the foundation of any partnership.

Communicating with your care team helps you understand your child’s condition, get information to make treatment decisions, learn skills to care for your child, and so much more.

You rely on the care team for their medical expertise, but you know your child better than anyone. Both you and the medical professionals are essential partners in getting your child the best care possible.

You start building partnerships with your care team during the initial diagnosis and continue through every step of the CHD care journey. Learning about the different types of medical professionals and how to communicate with your care team in the hospital are important as you find your way.

Everyone communicates differently and some people are more comfortable communicating with some types of providers than with others – this is true for both parents and medical professionals. It can take time to build a good partnership, and you will frequently need to get to know new people on your care team. Be patient with yourself and with others as you learn to work together in support of your child.

Tips for Communicating With Medical Professionals

1. Learn what they do

When you meet a new medical professional, they should introduce themselves and explain their role on the care team. If they don’t tell you what they do – or if you cannot remember – it’s okay to ask any time.
2. Tell the care team how you like to receive information

People learn in many different ways. Some people like to learn by hearing or reading information, or by seeing it explained in a picture. It helps some people if they repeat back the information out loud to the physician to make sure they understand what the physician is saying. Think about the easiest way for you to receive information and tell your medical professionals. This will help them communicate in the way that works best for you.
3. Learn how the heart works

Ask your physician to explain how a normal heart works and what is different about your child’s heart. This will help you understand your child’s heart problem and how the physicians and surgeons can help it work better. It may be difficult at first, but you will understand more over time. Your child will have a heart problem for all of their life, so it is very important that you feel confident making decisions about their care.
4. Keep a written list of your questions

Bring a list of questions to your physician’s appointments – on paper or on your phone – so that you can discuss any concerns or problems. In the hospital, many patient rooms have a white erase board where you can write any questions you think of.
5. Share relevant personal and cultural values

It is important to tell your medical professionals about personal preferences that you want them to consider when they care for you and your child. For example: food, manners, celebrations, clothes, and traditional remedies. Physicians want to know about your personal and cultural preferences because it helps them provide care that meets your family’s needs. Please feel comfortable sharing your personal preferences because it will improve communication and partnership with your medical team.
6. Tell your care team if faith is important to you

It is helpful for the care team to know and understand what your faith means to you. Medical professionals recognize that faith is important, especially during the diagnosis and treatment of a child’s illness. It is okay to discuss your faith with your medical professionals. This can help them support you through the challenging times in your child’s life.

PARENT TIPOvercoming Communication Challenges

Communication styles vary from physician to physician, hospital to hospital, and diagnosis to diagnosis. It will be easier for you to connect with some physicians and nurses than others, and that is okay.

The reality is that you will not have a perfect relationship with every medical professional. The most important thing is that you are both doing your best for your child.

If you are having difficulty working with someone on the care team, try discussing the problem with the person. If you don’t feel comfortable talking with them directly, discuss it with a person you do feel comfortable with – for example, another physician, your social worker, or a nurse. When your child is in the hospital, nurse managers and patient experience officers specialize in conflict resolution and can help resolve the challenge you are facing.

You will become more skilled at building partnerships with your care team as you get more experience and more comfortable with the medical language of CHD.