Maggie McKay (Host): Welcome to the Parent-ish podcast, where experts at Children's Mercy, Kansas City talk about the little everyday things parents experience with their babies, teens, and in-betweens. I'm your host, Maggie McKay. Joining us today is Angie Knackstedt, Program Manager of Health Literacy and Nursing Bioethics; and Susanna Elizarraraz, Mother and Family Advisory Council member. Thank you so much for being here today.

Angie Knackstedt, BSN: Thank you.

Susana Elizarraraz: Thank you for having us.

Host: Yes. So, let's start with you, Angie. What is health literacy and why is it important for parents to develop this skill?

Angie Knackstedt, BSN: Health literacy is actually defined as the ability to find, understand, and use health information to make informed decision about your child's health and healthcare. It's your right as a parent to understand the information that's given to you by healthcare professionals. But better health literacy leads to better understanding of the outcomes, the health outcomes, and the healthcare that's being provided to your child. So, it's important for parents to understand the words that we use, but it's also important for healthcare providers to give the information in a way parents can understand.

Host: And can you share some effective strategies for parents to communicate with their child's medical team?

Angie Knackstedt, BSN: Sure. The most important thing is that we have open and clear communication with parents and their child's healthcare team. It's actually crucial for them to understand what needs to be done, but also parents know their children best. We need to have them have the ability to share their thoughts and concerns with their team, and to always ask questions so the healthcare team can give them the information that they really need.

Host: And so, how can parents prepare for medical appointments to ensure that they get the most out of them? Should they bring notes? Should they write out questions ahead of time? What should they do?

Angie Knackstedt, BSN: All the above. Before coming to a medical visit, it's really important for the parents to really think about what they want to communicate with their healthcare team. So, bringing a list of your child's medications, things that you want to discuss with the doctor, maybe questions that have come up since the last time you saw their physician or their nurses. It's always helpful to find a way to keep that information handy. And we've developed a special form that's on the Children's Mercy website under the area of Participating In Your Child's Care that they can track what they've been doing while their child's been away from the hospital or since their last visit. They can take notes on that same form on the backside about the information that's given at the visit. So, being prepared is whatever works best for you and what you're trying to get from the appointments so that you can care for your child.

Host: And Susana, what should parents do if they don't understand the medical information provided by healthcare professionals? Because I'm sure it can be overwhelming. You're already kind of a wreck because your child has an issue, and now you have to figure out all the paperwork. So, what should they do?

Susana Elizarraraz: Yeah, absolutely. I've definitely been there. Our son is four years old and he's been with Children's Mercy for many years and has a trache and G-tube and sees 10 different clinics at the hospital. And so, there really is no way as a parent to be an expert in all of the things, and really medical professionals also aren't experts in all of what our son has going on, and that may be the case for other parents. So, I would definitely encourage you as a parent to look at it as you being the consumer, right? So if you think of yourself as the customer and the hospital, or the doctor, as the provider of a service, it kind of helps alleviate that stress or that hesitancy that there sometimes is to ask questions or to ask followup questions.

 It's your right, as Angie said earlier. And many, most amazing medical professionals are willing to get those questions and to dive deep with you. Chances are that you probably, as a parent, are seeing exactly what the medical professionals are talking about at home and in their day-to-day lives. It may just be a matter of understanding the lingo or understanding things that are a little bit more technical.

So, another big thing is making use of the patient portal. The patient portal has been so helpful for me, because if it's just a quick, "Hey, I'm noticing this thing and I can send over a picture," versus feeling like "I need to go in and make a whole appointment," right? And transport everything. That's another kind of easy way that you can get those questions answered.

Host: You bring up a good point. I feel like there's a theme, and I a thousand percent agree with it, that you have the right to know everything going on. And if you don't understand it the first time, ask again. And if you don't understand that person, ask somebody else maybe. I mean, I learned that early on when my son was little. Some of my friends are more shy maybe, and they'd be like, "Oh, I don't get it, but I just do what they said." I said, "No, you have to understand what you're doing and why. You can't be shy." We wouldn't with our own healthcare and especially with our children. I have to say, I think when it's your child, you're even more brave, hopefully. So, would you agree? Don't be shy and get the answers until you understand them and you have them.

Susana Elizarraraz: Yeah. And if Maggie, you make a great point of asking around to your friend groups, to your parent groups, other people who are in your circle, that maybe have gone through what you're nervous about. I think as parents we often feel isolated or often feel like my kid's the only one who throws tantrums this way, right? My kid's the only one who throws toys at their sister. But chances are that other parents have experienced it too. And so, asking around maybe helping build that confidence before you go to a medical professional is also super valid.

Angie Knackstedt, BSN: And Maggie, I was going to share one some other things that oftentimes I think parents need to speak up in their appointments because if they don't understand, then they can ask them to explain it in a more simple way, or show some pictures or share some tools that families can use. And one health literacy technique that is super important for our parents to realize, as well as our providers, is using what's called Teach Back.

And it's a way that our providers and our nurses and other healthcare professionals can teach the information that they're needing, but actually have the family repeat back in their own words what they understand, and then ask open-ended questions so families can ask more questions and give them information and they can clarify what they may not have understood or what they missed in the long sentence that they provided, or the technical words that they don't understand.

Host: Right. I'm just laughing because I'm thinking of my son, he's 21, and when he helps me with tech issues, like computer stuff, he'll do it. He'll tell me what he is doing. And then, at the end he always said, "Okay, now you tell me back how to do it when I'm not here." And I'm like, "Are you kidding? I wasn't paying attention." So, you're right though. I think that's a great tool because if you can't say it back or explain it back, you don't get it. You need to. So Angie, why is it important to involve children in their own healthcare and how can parents encourage this? Do kids want to know everything?

Angie Knackstedt, BSN: I think they do, and I think it's really important. It's a part of growth for children if they're an active partner in their healthcare and I think they should start even when they're young. And I not always do our physicians do that. They talk more to mom and dad, but I think we should allow them, teach them about their medicines and their health conditions and maybe their allergies that they have so that, no matter where they are, they can be ready to share with an adult if they're being taken care of by someone else. But at the hospital or at the clinic, they can actually ask questions. I would allow them to ask questions of the doctor so that they understand what they're going through.

It helps them prepare also if they're included for medical procedures or visits so they know what to expect so they know when they're going in that they're going to have a shot and what that means and how they can participate by asking the doctor more questions, "Well, what's my shot for?" or " What's going to happen when I get that?" But I also think as the children get older, they need to be an active part. They need to be helped and allowed to lead their visit with the healthcare provider.

Susana Elizarraraz: if I can add to that really quick. Our son, like I mentioned, he's four and his native language is sign language, American Sign Language. And so, we've been encouraged as a family to request those interpreters in the room, as he's getting his care so that he can be an active participant.

And so, kind of a kudos to Children's Mercy for kind of seeing that is important for kids to be a part of their decision-making and a part of their health. I think it makes it less scary, right? Our son has some conditions and some complexities are kind of scary. But if he's able to be an active participant and ask the questions that may alleviate some of that fear, that anxiety, I think that's awesome.

Host: That is very impressive that Children's Mercy has that resource and that they knew there was a need for it, like you said. Do most hospitals have an interpreter for that?

Angie Knackstedt, BSN: Yes, they do. And it's actually a law that for our folks that need that service, that they need to provide a person that can provide sign language. And that works with our children who are deaf or hard of hearing also, and other children that need that. But it's any type of language interpretation that we need. Now, it may not be an in person, person that comes in person, but it may be virtually, we can get interpreters that way also so that we can make that available to patients and their parents that may need those skills or need that way to communicate.

Host: Definitely. That's great. What are some reliable sources of health information that parents can trust?

Angie Knackstedt, BSN: I think one of the things is hopefully they have trust in their own provider or their own healthcare team that can provide them information, either based on national resources or local resources within the hospital. But one of the things you want to make sure that it's reliable and evidence-based health information. Looking for different sources maybe for vaccines, maybe from the CDC and other governmental agencies or research that's being done by many areas of healthcare. But also, our local libraries have wonderful, reliable resources and asking a librarian to help you. Here at Children's Mercy, we have our Kreamer Center for Families where there's information and folks to help you find that information. But also, our medical librarians here at the hospital are willing to do that. And there's also many non-for-profit organizations that work with different types of healthcare information and disease processes or conditions that they can have information of their own. And so, they can reach out to their local not-for-profit organizations.

And I think that's very important. But one of the things we need to remember, especially as we do more digitally, is be cautious of information because we're not always sure which site or source is reliable. So, doing your due diligence to check on that or to talk with your provider or your healthcare team or a librarian that can help you find that reliable information.

Host: And Susana, how should parents address concerns about their child's treatment plan with the healthcare providers?

Susana Elizarraraz: I think for many of us, I'm going to use the word confrontation, though it has a negative connotation, right? But confrontation is nerve-wracking, right? Confrontation really, honestly, has to be a part of the process when you're seeking adequate and equitable healthcare for your kiddo. Ultimately, you are the voice for your kiddo in a lot of scenarios and instances. And so, there have been many, many times in the last four, almost five years that my husband and I have had to ask questions or maybe disagree or ask for alternatives in terms of his healthcare. My suggestion for people who may kind of need a partner in that is that many hospitals, and Children's Mercy included, has a department for patient advocacy.

We have made use of patient advocacy in the past where it's very simple. You can make a phone call, they have an email access as well. And they're a group of people that are trained to help you kind of sift through an issue that you're having. And sometimes, it doesn't have to be escalated, right? Sometimes it's just either a misunderstanding or there's another way to access that information, but they make sure to be the liaison between the clinics and the health providers and the families, right? So, you're nervous about kind of leading that conversation on your own, Children's Mercy does have a patient advocacy team that can support you in that.

Host: That's so smart because everybody wants the best outcome for the child, obviously. That's why they work there. You're the parent. It's just maybe some people have a different bedside manner or someone, just doesn't understand information the way it's being given. So, that's brilliant.

Angie Knackstedt, BSN: When you're talking with your providers, if you're at a visit or use your patient portal, if a parent finds something they don't understand, actually ask that question, ask it right then and get that answer so you can understand better. But I agree with Susana, that it's really important to remember you're not alone and you have a voice with your child's care, and that you bring up concerns or ask questions so you get more information in a more timely fashion.

Host: Absolutely. What resources are available, Angie, to help parents boost their health literacy and navigate the healthcare system effectively?

Angie Knackstedt, BSN: I think first of all is using that patient portal as much as you can, or calling your physician and your healthcare team to make sure that you're getting the information. But I always think there's lots of other information that we provide. Our health literacy committee works very hard with our teams to get information written in a way that it's more understandable, trying to work in the plain language. What we talk is plain language, trying to aim for the fifth to seventh grade level to get information that can be written and working more to get it translated into more types of different languages so that all of our families have access to this.

 We're developing brochures, videos. I think seeing things in action also helps with the learning. For example, with trach care is having videos or pictures and things like that will help new families when a child has to have this care. But also, on our Children's Mercy website, we have what's called Kids' Health. It's a tool that has access to thousands of articles related to questions that parents and teens and kids may have. So, it's not only for the parents, but kids and teens can also use that. It has pictures and videos. We've worked with kids health for a long time. There's also videos in the patient rooms that they can watch and see that.

Another thing is to visit the What To Expect Paige so that you'll know what to expect for various procedures before your child's visit. And I would always say be sure that you got the discharge instructions you need as you leave a child's visit or you're discharged from the hospital. And make sure that you go through that thoroughly with your healthcare team so that you can ask questions upfront. If it's a new medication, understanding how to take that, when to take it, asking those questions there before you leave the hospital or the clinic so that you can have those questions answered and feel more comfortable when you get home.

Host: Absolutely. Susana, is there anything else you'd like to add in closing?

Susana Elizarraraz: I think the only thing I'll add. In the spirit of the topic of this conversation is that, as I mentioned earlier, none of us are experts in life, in anything, right? And so, we're only experts in the things that we're trained in and that we learn about. And the way to learn things is to ask questions. As your kiddo is on their health journey, and you're gaining that knowledge. As I said, you are your kiddo's advocate. You're your kiddo's voice in some instances. And so, don't be afraid to ask those questions and ask other parents, and be an advocate. Be there.

Angie Knackstedt, BSN: One last thing, I want to thank Susana and her fellow parents that are either on staff or part of our PFAC Groups. We love to have their input and reach out to them for many things as we help develop information and processes and procedures for families here at the hospital. And I think they're the invaluable resource that we do have so that, when one parent's gone through some things, they have the experience and tell us what helps to make that experience better for another family that's coming into Children's Mercy.

Host: Absolutely. It's a team effort, right? Both the parents and the providers. Well, thank you both so much for talking to us and taking the time. This has been fascinating and educational.

Susana Elizarraraz: Thank you, Maggie. Thank you for having us.

Host: Absolutely. It seems like you have covered all the bases and Children's Mercy just sounds amazing to me. So if you would like to find out more, please visit children's mercy.org/parentish. Thank you, Angie and Susana, for sharing this information. That concludes this episode of the Parent-Ish Podcast. For more parenting tips and tricks, visit us at parentish.org where we help you celebrate the craziness and challenges of parenthood.