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Tips for Advocating for Your Child with Medical Professionals


Published: Feb. 16, 2024Updated: Dec. 6, 2024

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Regardless of whether your child’s hospital stay or medical procedure is anticipated or totally unexpected, there will be a lot to absorb and learn. Knowing the ins and outs of navigating medical staff can help your experience be a bit less stressful. To get insights on advocating for your child with doctors and other medical professionals, we spoke to several parents of medically complex children: Undivided Navigator Heather McCullough, Undivided Public Benefits Specialist Lisa Concoff Kronbeck, and Undivided Director of Healthcare Advocacy Leslie Lobel.

Brush up on your communication skills

For Heather, her top priorities were learning to navigate the hospital and medical system, as well as learning how to communicate with the doctors to better interpret the information they gave and know how to find information. “Those were the keys to being able to be such a good advocate for [my daughter] — that's what drove everything. If I don’t understand, how can I advocate for her? How can I say, ‘I don't think this is the right decision’ or ‘Maybe we should try this.’ So being able to find the information you need to understand what they're saying, asking questions, and communicating: those were probably the most important things to be able to do from day one.”

Ask all the questions

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.”

Be mindful of hospital culture

Whether you’ve been in the same hospital for years or you’re switching to a new one, knowing the culture of the hospital can help avoid some disasters. Leslie tells us that when her daughter was in the hospital, she was on a specific medication that the hospital wasn't getting. “It was a hormone that my daughter was taking for a specific reason,” she says. “It's also a hormone that's in birth control. We were in a Catholic hospital that did not want to give her that medication because even though it was not being used for birth control for our daughter, it was not compatible. Nobody told me that, but eventually I figured it out. So you should be mindful if there's anything about the culture of the hospital that's not compatible with any regimen that your child is on.”

Connect with nurses and other staff

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.”

Come prepared with your expertise on your child

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.

Tips on talking to doctors and nurses

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.

7 Tips for Talking to Doctors and Nurses

Ask for a second opinion

Leslie tells us that if parents have a different opinion from a doctor, they shouldn’t be afraid to ask the doctor to address that. They can even talk to a nurse or their primary doctor, if it's a specialist, and ask for a second opinion. “Ask a doctor who you already trust what they think of what that doctor said. Ask your primary care physician what they know about this physician and what they think of the opinion expressed. If you're going to ask for a second opinion, ask for it respectfully — you're completely entitled. And before you ask for a second doctor you've never met, reach out to someone else on your child's medical team and ask them to help you assess the information you've been given. That's a good thing because the doctor could say, ‘Yeah, that's valid,’ or ‘I don't think that's a valid concern, or ‘That's the standard of care,’ because it's easy to lose perspective.”

Learn medical terms and definitions

Understanding medical terms and definitions isn’t always the easiest thing. Some common terms you may hear may include SATS or O2 (oxygen saturation), RR (respiratory rate or rate of breathing), BP (blood pressure), and DME (durable medical equipment). Lisa explains that when her daughter was born, the hospital provided her with two books: “One of them was about Down syndrome and one of them was about preemies. And it was actually really helpful to read the book about preemies because it had a lot of stuff like what they mean when your child has bradycardia. Sometimes babies who are super premature will stop breathing, they’ll breathe intermittently — there's just all sorts of things to look out for so that you're not freaked out by it when it happens. That doesn't stop you from being freaked out by it when it happens, but at least the intellectual side of you can think, ‘Oh, yeah, this is that thing I read about in the books that happens frequently, and it's not something to panic about.’ When your child starts to turn purple while you're holding them, the book doesn't really matter, but it's still nice to try to prepare yourself.”

Remember that you’re part of the team

It’s very important for parents to understand that they're not beneath any of the care team — they are part of the care team. As Heather says, “There are the doctors, there are the nurses, there's the family, and they're all on the same level. Yes, the doctors have the knowledge and the experience to help us find treatments and guide the care plan, but so do the parents. Parents can say, ‘Hey, I'm not comfortable with this. I have questions. I heard about this, can we try that? Can you contact this other doctor who's a specialist in this field?’ So you do have input and you are part of the team. And a lot of families have a hard time understanding and having that confidence. They do feel like they shouldn't be questioning doctors, or that the doctors are going to be offended and they're going to take it out on their child and their child is going to get less care or worse quality of care. If you're seeing that, that's a red flag that you should find a different team.”

Contents


Overview

Brush up on your communication skills

Ask all the questions

Be mindful of hospital culture

Connect with nurses and other staff

Come prepared with your expertise on your child

Tips on talking to doctors and nurses

Ask for a second opinion

Learn medical terms and definitions

Remember that you’re part of the team
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Author

Adelina SarkisyanUndivided Writer and Editor

Adelina Sarkisyan is a writer, editor, and poet with an undergraduate degree in anthropology from the University of California, Irvine, and an MSW from the University of Southern California. Her fiction, poetry, and content have appeared in various mediums, digital and in print. A former therapist for children and teens, she is passionate about the intersection of storytelling and the human psyche. Sarkisyan was born in Armenia, once upon a time, and is a first-generation immigrant daughter. She lives and writes in Los Angeles.

Reviewed by

  • Cathleen Small, Editor
  • Brittany Olsen, Undivided Content Editor

Contributors

  • Heather McCullough, Undivided Navigator
  • Lisa Concoff Kronbeck, Undivided Public Benefits Specialist
  • Leslie Lobel, Undivided Director of Healthcare Advocacy

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