Tips for Advocating for Your Child with Medical Professionals

When you’re in a doctor's office or hospital, you’re going to have a lot of questions — naturally. Sometimes, it will be hard to process all the information being thrown at you. It’s okay to ask the same question twice (or 10 times!). While medical staff and your team should be able to help clarify your questions, that may not always be the case. For Heather, the first hospital she and her family were in wasn't necessarily the most informative. She tells us that while certain professionals were easy to talk to, the majority were not. “I was on my own,” she says. “I ended up having to have a lot of heart-to-hearts with the team, saying, ‘Hey, we're all part of this team. We all care for this baby. Let's communicate. Let's work together. I have questions. I know I've asked this a million times, but I need to ask it one more time.’”

Some of the best resources Heather found were in other parents. “I leaned on the community. I found support groups online for my daughter's syndrome, for her diagnosis, and I started trying to find families who had the same kind of experiences, long hospitalizations, and complex diagnoses that were similar to my daughter. Then I could pick their brains, and they could point me to other information. But asking questions is going to be the most important thing. No matter where you are, ask questions. Don't let yourself feel stupid. Don't say that there's a dumb question; all these questions are important. You need to be able to have the ability to ask questions.”

Make yourself known. Introduce yourself to all the doctors, nurses, and staff, and make sure everyone knows who you are and which child is yours. It can be overwhelming to be surrounded by so many people coming in and out of a clinic or hospital room, but remind yourself: “I’m here. I’m the expert on my child.” Connecting personally with the hospital staff can also help you as a parent. Nurses are a great source of information and resources as well, so don’t hesitate to ask for help.

Leslie reminds parents to keep these two words in mind: thank you. “Say thank you to everybody who doesn't hear thank you. Someone comes in and cleans your child's room, and they're doing nothing all day but cleaning up medical waste and cleaning bathrooms. It's really important to say thank you. It's a time where sometimes it's difficult to feel [thankful]. And that's a particularly important time to say thank you.”

As a parent, you are one of the most important people on your child’s care team. You may not be familiar with all the medical lingo or what every machine does, but you know your child better than anyone, even if your baby was born a week ago. You are a part of the team as the insider to your child's life and are so incredibly valuable because of that perspective. It’s understandable to feel anxious or intimidated, but you should be able to ask questions, voice concerns, and talk to staff members confidently, and with the mindset that you are all working together. Because you are working together.

The staff may know the reason your child is in the hospital or medical facility, but they probably won’t know everything about your child, such as any other areas of need. One study in Pediatrics on healthcare discrimination for medically complex children resulted in caregivers sharing that hospital staff lacked interest in caring for their kids, sometimes dehumanized their kids, had negative assumptions based on their kids’ disability, had bias regarding their kids’ quality of life because of disability, and had a lack of knowledge regarding disability in general.

As the parent, you can change — or at least challenge — those assumptions and biases by letting staff know who your child is, what they need, what they like and don’t like, and that they are more than their diagnoses. Here’s what you can do to prepare:

• If your child’s care is complex, make a list and take it with you to the facility. On the list, write down all the medication they're on — doses, frequency, what medication, etc. — and all the doctors and specialists they see. It’s hard to remember everything when you’re in such a state of stress and overwhelm.
• Don’t expect the staff to know everything about your child’s care. Your child could go to an appointment for one thing but have a few other diagnoses, some of which the staff may be familiar with, some they may not. Be open to teaching nurses the specifics of your child and their care needs.

Being intimidated when surrounded by white coats is completely normal, especially if you are a new medical parent. But being a great advocate for your child means being open to communicating, even when it feels sticky. Here are a few tips:

• Ask for clarity if you don’t understand something.
• Don't pretend you understand something that you don't understand.
• Ask them to explain things in another way.
• Ask them to write down any information so you can look at it again later.
• Don’t hesitate to tell them that you have a list of questions and to leave room for them at the end.
• Ask for a translator if the language at the hospital is not your primary language (they can even provide a simulcast video translator).
• If conversations feel emotional or confrontational, don’t panic. Express a sentiment such as "I'd like to get your thoughts on this" to phrase things without sounding confrontational.
• If you need time to think, saying, "I can't think of anything to ask right now. Is there a number, email, or some way I can reach out if I do think of a question?" is a great way to allow your mind some time to process.