SEGMENT 1: Culinary medicine is an evidence-based medical practice that affirms the saying “You are what you eat.” One part food, one part cooking, and one part medical science, culinary medicine aims to help folks make the right decisions about food to help prevent and treat disease. Pediatric gastroenterologist Dr. Maria Mascarenhas with the Children’s Hospital of Philadelphia counts among her many specialties culinary medicine. On this episode, we talk about her passion for this relatively unknown but vitally important sliver of health care.
SEGMENT 2: Whenever a child leaves the hospital setting for home, it’s a cause for celebration. But it’s also the moment when the role of hospital-based child life providers — the specialists who help children cope with their medical experience — often ends. For children whose medical conditions continue to require treatment, even at home, their psychosocial needs don’t end, and one Texas-based organization, Child Life On Call, is using technology to bring important child life services to kids outside the hospital setting, no matter where in the world they may live.
Guests:
Maria Mascarenhas, MBBS, pediatric gastroenterologist, Children’s Hospital of Philadelphia
Katie Taylor, CCLS, CEO & Founder, Child Life on Call
Jamie Gentille, MPH, CCLS, Advisory Board Member, Child Life on Call
Producer, Host: Carol Vassar
EPISODE 48 TRANSCRIPT
Carol Vassar, podcast host/producer:
Welcome to Well Beyond Medicine, the Nemours Children’s Health Podcast. Each week we’ll explore anything and everything related to the 80% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar. And now that you’re here, let’s go.
When a child leaves the hospital, it’s cause for celebration, but it’s also the moment when the role of hospital-based child life providers, the specialists who help children cope with their medical experience, often ends. For children whose medical conditions continue to require treatment even at home, their psychosocial needs don’t end. And one Texas-based organization is using technology to bring important child life services to kids outside the hospital setting, no matter where in the world they may live. More on that in a moment.
Right now, let’s talk food. We’ve all heard the saying, “You are what you eat.” Well, culinary medicine is an evidence-based medical practice that affirms just that. It’s one part food, one part cooking, and one part medical science. The goal? To help folks make the right decisions about food to help prevent and treat disease. Pediatric gastroenterologist Dr. Maria Mascarenhas with the Children’s Hospital of Philadelphia counts among her many specialties culinary medicine. We spoke with her recently about her passion for this relatively unknown but vitally important sliver of healthcare.
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
Culinary medicine is teaching people the science and art of how to use food to better their health and for enjoyment. So we don’t want to have people just eat food because they have to eat food because it’s good for them. We want them also to enjoy it and cook it and participate in it. So they will pretty much want to motivate them to make changes, but make changes with their active participants.
Carol Vassar, podcast host/producer:
How is this different than walking into my doctor’s office and saying, “I need some advice on what to eat or what I can cut back on or what the most nutritious foods are.”
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
Yeah, your doctor probably would say, “Here’s a handout, do this, this, this, and you’re fine.” Well, culinary medicine is different. We actually meet the patient where they are, and this can be done individually in one-on-one consultations, or it can be done in group sessions where it’s focused on certain areas, but it’s really explaining to the patient and their family and their caregivers because you can’t teach someone culinary medicine in isolation. You need to really teach the whole family. So it’s meeting them where they are, assessing their level of interest and what they’re willing to do, and then based on what the goals are, the mutually agreed on goals, you kind of help them understand first why you’re making, recommending these changes, and then you teach them how to use foods.
Carol Vassar, podcast host/producer:
And this is evidence-based. Talk about that.
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
There’s more and more evidence showing the power of culinary medicine, the power of teaching patients to change their eating habits, their diet habits. There’s plenty of evidence in adults and now growing evidence in children as well. This actually works really well in the underserved as well because it’s easy to teach people who are well off to do this. But even more powerful is to take someone who may not have access to these foods and then teach them how to use foods that they have access to, but in a good way, in a way that will promote health. So for example, we have had a wellness education program through CHOP, and one of the lessons is on nutrition. And so in that session we have a health educator working with the family on culinary medicine, telling them what the different food groups are.
And the patient I’m thinking about was someone who had ADHD. And so kind of explaining how dyes and chemicals were not good and allowing them to find choices of how they could get the same food they want, but in a healthy way. So, for example, instead of having fruit juice, eating the fruit. Or if they wanted, instead of having a soda, using fruit infused in water, so then you get the flavor of the fruit. So it’s not plain boring water. That’s what they call it. I like water myself, but it’s not just boring water. It’s more spa water, as we call it, but it’s fancy.
Carol Vassar, podcast host/producer:
And it can be really tailored to each patient. Tell us more.
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
Correct. So it can be tailored for each patient. So for example, for patients with inflammatory bowel disease, we want them on an anti-inflammatory diet. So we work around what kind of foods they like, what’s in their cultural background, and taking that into account, we help them make choices and then we teach them how to cook. So we actually cook with them. Chopping, sauteing, whatever it is, we work with them and teach them. The nice part about working with children is if you can give them a good reason why and explain to them and make them part of the process, they jump on board very easily.
Carol Vassar, podcast host/producer:
Is this a throwback to what my grandmother told me when I was a young kid, that you should eat the fresh fruits and vegetables and the whole grains?
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
Yes. We are going back to basics. That’s what I call it. I look back at how my grandparents ate. That’s what we have to go back and do. So whole grains, fruits, vegetables, water, and part of culinary medicine is also enjoying the food, being connected with the food. So maybe going and picking blueberries or apples depending on the season. And also family time, cooking together. It’s all that. Because really culinary medicine, we base it on… A lot of the benefits of eating we based on the Mediterranean diet or the anti-inflammatory diet. And that really is a way of living. So yes, it’s the food, it’s how you cook, it’s who you cook it with, when you eat it, you eat in season, locally grown. So it’s good for the environment.
And so for teenagers, connecting them with the environment and showing them how if they eat in an environmentally responsible way, which is the same as eating a healthy diet often, that they’re actually doing a big thing, and you get them there. So, we have to tailor the message based on our audience.
Carol Vassar, podcast host/producer:
This is individualized medicine at its most basic, isn’t it?
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
Yes. Or people think personalized medicine is looking at your genetic makeup and deciding what drugs you need, what biological agents you need, but this is personalized medicine or individualized medicine. Yes. When you meet the patient where they are. And it’s a journey. Healthcare, or the relationship between a provider and the patient or the team and the patient, is really a journey. And as pediatricians, it’s a gift that we have to be able to follow that child from birth through adolescence and young adulthood.
And so if along the way we can help them learn how to eat healthy foods, learn healthy eating habits so that they stick with them in the long term, we’ve done our job because they will do better in the long term. Once you have good habits, even if you stray away from them, let’s say in college, et cetera, you’ll come back to it, ultimately. It’s like your comfort food. You know that
Carol Vassar, podcast host/producer:
When it comes to children, is this a way of approaching the seemingly endemic issue of childhood obesity?
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
Yes, absolutely. I think that when we see patients in the office who have obesity, one thing that we have to work with them is what a healthy diet is. Because the goal is yes, they have to lose weight, but the message is not you have to lose weight. The message is we want you to be in a healthy weight and eat healthy food so that you’ll have a healthy body. There’s too much focus on losing weight, and we don’t want kids to have eating disorders or disordered eating. That’s not our goal. Our goal is to teach them because, really, if you learn to eat healthy foods and you feel good when you cheat or you eat an unhealthy food, you don’t feel good. And then you want to go back to say, “No, no, this doesn’t agree with me. I’m not going to eat it. I’m going to eat the healthy food.” So my colleague over here, Dr. Michelle Loy, she has a daughter in college. And she says, “Can you make me the banana bread you made at home? Because the banana bread here in college doesn’t taste good, and I don’t feel good after I eat it.” Because it’s made in a healthy way, right? Using culinary medicine principles.
Carol Vassar, podcast host/producer:
In some ways, and I’ve read this about culinary medicine, and we don’t want to take away people’s medications if they’re working, but can there be a substitution of better eating with certain prescriptions?
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
Absolutely. So, there is very nice data on how food can be used to treat reflux, constipation, eosinophilic esophagitis. Celiac disease is an obvious, because you go on a gluten-free diet, but inflammatory bowel disease, irritable bowel syndrome, the list goes on and on. And really, the anti-inflammatory diet is a very nice complimentary modality to use for patients with inflammatory conditions, whatever the etiology is, whether it’s inflammatory bowel disease or rheumatologic conditions. Absolutely.
Carol Vassar, podcast host/producer:
Can you cite an example of a patient, without going into anything that would be disturbing their privacy or giving us any privacy issues, who has benefited from culinary medicine?
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
I’ll give you an example of a patient who came to us with belly pain, intermittent diarrhea, bloated, fatigue, just not feeling right, irritable, gassy. And so in the program where I have a dietician with me, we did a whole medical evaluation, history, physical exam, got a few labs that I thought were indicated, and then we got a really good diet history. And we found out that the patient had fructose intolerance and sorbitol intolerance. And so really, by working with the patient and the family around fructose-containing foods and sorbitol-containing foods and giving them suggestions as to how to use little bits, none of it depending on what meal the date was, by partnering with them, we have got her to a point now where she doesn’t need to see us anymore, which is always a win-win. But she and her family have the tools for how to handle this. And so they know if they eat a little bit more of something that’s not good for them, that they may run into problems, but if they eat within the parameters, they’d be okay. But it’s not restrictive. There’s choice, and there’s so much we can give them that they have experimented actually on their own.
I would like to share another example.
Carol Vassar, podcast host/producer:
Sure.
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
It just came to mind. So, this was a young man with autism. Homeschooled. He was a late diagnosis of autism, homeschooled because school was too stressful for him. So very high-functioning autism. And someone who liked growing vegetables in the garden. And he came to us on a very restricted diet, self-restricted because he has autism. And so those kids, they want things a certain way.
By using a combination of diet and pancreatic enzymes for him, we were able to stabilize his weight loss. He had lost like 15 pounds. We were able to stabilize his weight loss. We were able to add a sucrase enzyme product. And he’s now back to eating a regular diet. He’s gained weight. He’s growing vegetables in the garden. He’s growing so much that he’s feeding not only his family but the neighbors as well. And he’s in a much better place, much, much better place. So, I think for him, this one-on-one that we worked with him and his family was huge.
Carol Vassar, podcast host/producer:
We’ve talked a little bit about, or a lot about, actually, the physical benefits of culinary medicine. Let’s talk about some of the mental health benefits.
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
I am so glad you brought that up because there is growing evidence that eating right, eating a healthy diet, and again, when I say healthy, plant-based, plant-forward, grains, fruits, vegetables, and not as much animal protein in the diet, has been shown in many studies using different diets to have higher quality of life, less anxiety, less depression. Because what happens is when you eat the right food that your microbiome likes, the whole brain gut connection works well. And then the microbiome release chemicals, we call the metabolome, that overall work well. So we know this, that the microbiome can be manipulated based on the food you eat, and the microbiome is connected with your brain and really every part of your body at this point: the immune system, endocrine system, the whole body.
Carol Vassar, podcast host/producer:
Let’s talk about when you don’t have access to fresh fruits, vegetables, whole-grain foods. That seems like it’s a barrier to actually participating in culinary medicine. What are some ways people can overcome that?
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
So a simple choice would be you don’t have access to fresh fruit and vegetables, but you might have access to frozen vegetables and fruit. That’s an easy choice because you can keep it. It won’t get spoiled and…
Carol Vassar, podcast host/producer:
It keeps its nutritional value?
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
Nutritional value. And usually, when they freeze fruit and vegetables, they freeze it at its peak condition. So you’re not going to get slightly old beans or peas or carrots or corn. You’re going to get fresh. Fresh berries. They’re frozen. So we get creative with families around what you can mix that with. But you can take frozen berries, let’s say, and mix it with yogurt, so then you’re not buying, and you’re buying plain yogurt, or if they were interested, you could even teach them how to make their own yogurt. So then you’re getting the power of a fermented food, the power of protein and calcium from that yogurt. And the berries. And berries are really, with all their antioxidant powers, they’re really good for the brain, for stress, anxiety, yes. So we work with families around that. And there are many examples in the country of people who work with the underserved and teach them how to use WIC, SNAP benefits at farmer’s markets, and how to eat on a budget.
Carol Vassar, podcast host/producer:
What do you wish pediatricians and other people who work directly with children knew about culinary medicine?
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
I would love for them to know that there’s power in food, and given that they are such important people in the lives of those children and their families, that they have the power to make these changes slowly, one by one, and make suggestions. And I would love for them to actually share the changes they’ve made in their life because there’s nothing more powerful than you sharing with your patient.
And I’ll share this, I’ll be honest with you. I was a Diet Coke junkie. I used to have two a day. Well, I have them now, but on rare occasions, but I got over it, so I’m no longer addicted. And when I shared that example with patients, they’re like, “Oh, you did it.” In fact, on Thursday, I saw a patient, and she said, “Okay, I’m going to start tomorrow,” because I told her I did it, “But can I just have my last Diet Coke today?” And I said yes.
So you have to meet people where they are. And no carrot and stick. It’s more motivational interviewing style, encouraging, putting it there, especially if you’re doing it at home, putting it there, offering it, having parents offer it several times because we know children need to be offered something many times before they’ll take it.
Carol Vassar, podcast host/producer:
What happens when someone has a setback? Maybe they go back to Diet Coke, maybe they’re eating brownies for breakfast. What do you suggest?
Dr. Maria Mascarenhas, Children’s Hospital of Philadelphia
Well, then you have them check in with themselves and ask them how they feel. If they’re honest with themselves and with you, they’ll say, “I don’t feel as good. I’m not sleeping as well. I’m kind of crabby.” And then you ask them what changes they want to make and start with small changes. I always say Rome was not built in one day. It can be a small change. It could just be as simple as we’re going to switch out the white bread for a whole grain bread. Or it can be as simple as instead of having an eight-ounce glass of juice. I’m going to decrease it to four ounces of juice. Small changes, small changes go a long way because you develop those habits, and then once you develop the habit, then you’re more likely to stick with it.
Carol Vassar, podcast host/producer:
Dr. Maria Mascarenhas is a pediatric gastroenterologist with a specialty in culinary medicine with the Children’s Hospital of Philadelphia.
MUSIC
When most people think of a child life specialist, they think in hospital services. Katie Taylor herself, a certified child life specialist, recognize the fact that many families leave the hospital with a child who is still receiving medical care and still needing child life. To fill that gap, Katie created Child Life on Call to provide child life services and family support delivered both in real-time and on demand. Child Life on Call leverages technology, an app, a podcast, virtual support groups, and telemedicine platforms to bring child life services to children and families wherever they may be. Katie and two of her colleagues, child life specialists, Jamie Gentile and Annie Gunning, stopped by our mobile podcast truck at the American Academy of Pediatrics conference recently to tell us all about Child Life on Call.
Katie Taylor, Child Life on Call:
What we really are are psychosocial care and child development experts in healthcare. And we look at the whole family system from children and siblings and parents, and how can we best support these families through critical times in healthcare and also beyond the hospital setting? So we try to see how can we use child development and what we know about trauma-informed care to really support families and not only help them survive what they’re going through but really thrive in the medical environment.
Carol Vassar, podcast host/producer:
I’m curious because I’ve only ever personally experienced child life in a hospital setting. How did your organization get started? Katie, you’re the founder.
Katie Taylor, Child Life on Call:
Yes. Yeah. Well, as a child life specialist working in many different settings, from large children’s hospitals to small, really finding that there was a need beyond the hospital for child life. We often see them and say, “All right, families, we’ll see you next time you come in.” But so how can we meet families where they are? And that’s really where the idea of the mobile app was born of Child Life on Call. And how can we work with families beyond the hospital setting?
So what it looks like often is virtual sessions with families, providing resources, preparing them for procedures, teaching parents how to advocate for their child, connecting them with community resources. So, taking what we would do with a family in a patient room and then just doing it outside of the hospital too.
Carol Vassar, podcast host/producer:
So you’re doing all this through an app, it sounds like?
Katie Taylor, Child Life on Call:
That’s correct.
Carol Vassar, podcast host/producer:
Describe the app to us. It’s downloadable, I’m assuming from both the Android and iPhone stores.
Katie Taylor, Child Life on Call:
IOS and Android in English and in Spanish. It’s HIPAA-compliant. So we partner with hospitals and healthcare systems so that they can expand and enhance the amazing work that their child life team is already doing. So not replacing child life, but when child life goes home, to provide equitable care. Those families still need access to child life resources. That’s really where we try to bridge that gap.
Carol Vassar, podcast host/producer:
Annie, I want to ask you, how did you get involved with Child Life on Call?
Annie Gunning, Child Life On Call:
Yeah, so Katie and I connected a couple years ago initially, and it was about the app, and that kind of evolved into, “Hey, I’m partnering with this organization, Hope for HIE, and we want to provide innovative care and provide child life services virtually to these families.” So I work with Katie through Child Life on Call, and we work together with Hope for HIE, so I can be that child life service, that supportive service for all of those families, which is global.
Carol Vassar, podcast host/producer:
Jamie, how did you get involved?
Jamie Gentile, Child Life On Call:
So Katie was a child life specialist that I worked with at Inova, and years after she had moved on to the great state of Texas, she had this great idea and thankfully, we stayed in touch, and I was able to just be connected with Katie and see this idea go from a podcast to a tool that child life specialists can use across the country and that it are benefiting so many parents and families. So I’ve been able to see it since inception, and then we like being first and we were really excited to be the first hospital to use it. So it’s been a pleasure to watch it. And what’s really nice is that as a Child Life specialist, knowing that it’s created and curated by a child life specialist, is really comforting. We want to make sure our families are getting the best possible information in the way that we would present it as child life specialists, and that’s what this provides for us.
Carol Vassar, podcast host/producer:
Katie, I’m a parent. Maybe I need some child life support for the child in my home. How would I experience Child Life on Call? How does this appear to me in my daily life?
Katie Taylor, Child Life on Call:
Oh, Such a good question. So the first thing you could do is go to childlifeoncall.com/parents, where we have so many free tools for parents, some that are included on the app and some that aren’t. But really, we start with what works best for parents, and usually, that’s other parents and community. So we use our podcast, which has over 190 stories of parents sharing stories, and we can curate and say, “I really recommend you listen to this podcast. This mom was going through a really similar situation.” Even if it’s not the same diagnosis, parents are telling us the feelings actually are still the same even though our child may have totally different conditions. So we really start with that community aspect, which is so important with trauma-informed care.
And then, we move to what other resources will help you feel empowered. Do you want to learn how to communicate with the care team? Do you want to learn how to do comfort positions with your child so the next painful procedure, you know how to appropriately support or prepare them? Or does your child have sensory needs? We recommend this tool so you can communicate your child’s sensory needs with the care team. And really just try to look at a unique family and how can child life really support them?
Carol Vassar, podcast host/producer:
Jamie, you mentioned that your hospital is using the app. In what way is the hospital Inova using this particular app in its day-to-day work with kids?
Jamie Gentile, Child Life On Call:
So Inova has used the app for about a year and a half now, and we have seen it as an extension of our child life services. We always get asked the question when patients are being discharged, “Well, how do I follow up with you when I have questions?” And you can’t. Our physical services end at discharge, but this has been an amazing way for us to say, “This is what you can follow up with. There’s great information on here. It’s material that you might have questions and you’ve got a lot of information during your hospitalization. You can refer back to this and kind of help sort through it.”
So we’ve used it as an extension of our services. We also can’t be in every place at once, so we need to figure out how to extend our toolbox and get our child life tools in the hands of families, even when we’re not physically there. So it’s been an amazing way, a one-stop shop for us to have, okay, this is great for you to download. We’ll show them resources while they’re there, and then they’ll take it home and actually digest it. And it’s been also amazing for us to extend to our outpatient and ambulatory settings that see hundreds of kids a day. And some of those parents just need a bit of information on what to expect. We can put it right there. So it’s been an amazing asset for us to use for that.
Carol Vassar, podcast host/producer:
Annie, you mentioned that you worked with a child or mother or father in Kenya. Tell me about the work you do, the virtual work that you do. It sounds like you have, if not direct, it’s virtually direct care. Talk about that.
Annie Gunning, Child Life On Call:
Yeah, so the mom that I worked with in Nairobi, her child had HIE, and she just needed help with some additional resources that weren’t available to her, but HIE was able to help provide that, and I’m able to do that through Child Life on Call. So it was just setting up. I set up Zoom calls with her, and I taught her the infant massage, but then I was also able to utilize the resources from Child Life on Call and send her additional information on typical developmental play, things that she could try, and that, I think for that mom, was the most beneficial. I could also provide suggestions for just how could she play with her child, who had different ways that he needed to do things and just make her feel more successful and that she was empowered to do things for her child that she didn’t think she could do.
Carol Vassar, podcast host/producer:
Do you do virtual visits every day?
Annie Gunning, Child Life On Call:
So it depends. Some weeks I have more people that I talk to. And by virtual, sometimes it’s a phone call, sometimes it’s I’m sending them emailed resources, sometimes I’m responding to a Facebook post, and there’s a conversation happening. So then we might schedule a Q and A and provide some resources for this is how you can play with your kids. There was a lot of talk about that. So I just decided, look, instead of me typing this all out to a bunch of different families, we’re just going to have a live session to talk about the importance of play and how you can do it, and you can adapt it for your child and for their needs.
Carol Vassar, podcast host/producer:
Katie, you talked about equity, and I’m hearing what Annie is saying, and certainly, this is reaching a global aspect of child life. Talk about how this goes toward the idea of equity.
Katie Taylor, Child Life on Call:
I think sometimes, when we think about health equity, we can just be thinking about medicine and treatment, but really, the psychosocial care of children and families is so important. We always say hospitals that take care of their parents really well have great success with pediatrics. So when we look at health equity and child life, it’s do all families have the same access to child life resources? And the answer is often no. Because child life isn’t there, we don’t work 24/7. We are just like the rest of healthcare in a staffing crisis and have open positions everywhere. But this at least gives parents who come into at least Inovo Children’s and other hospital partners access to the same tools and resources that are curated by child life specialists and really work. So, this child who needs help with pill swallowing can now get it on the app because their parent knows how to properly support them. They now have access to more medications because they know how to swallow pills. And really just that psychosocial information that is just essential for better outcomes for pediatrics.
Carol Vassar, podcast host/producer:
I’m going to talk cost, and I know that’s kind of a gauche question to ask.
Katie Taylor, Child Life on Call:
Gosh, yeah.
Carol Vassar, podcast host/producer:
The app, I’m assuming, is free, and the information that’s on the app on the Facebook page, on your podcast is free of charge. For the virtual sessions, are those covered by Medicaid? Are they covered by private insurance?
Katie Taylor, Child Life on Call:
Yes. That’s such a good question. They’re not covered by insurance yet, although we are working on that. Right now, our business looks a lot like we partner with companies, hospitals, healthcare systems, Hope for HIE, who pay for the licensing of the app and access to services. So, it’s an annual payment made by the company who sees patients. So it’s called a B2B2C. So they’re partnering with Child Life on Call and they provide the service or app to their families. So the cost of the company comes, Inova Health System pays for it, Hope for HIE pays for it, but all of the families get it for free. And that was our main goal in developing this. We don’t want families to pay for one more thing, especially when they should already be getting access to child life services.
Carol Vassar, podcast host/producer:
I was going to say it goes right to the access issue, and it sounds like you are trying to break down that access barrier as best you can and in great ways. Jamie, is there a story that you can share with us, the work that you do through Child Life on Call, that kind of inspires you as you move forward in this work?
Jamie Gentile, Child Life On Call:
Absolutely. Lots of them come to mind, a couple in particular. We had a patient I was alluding earlier to. Just the overload of information and parents having a hard time keeping track of everything, and particularly when their medical team comes and rounds on them, the questions that they thought they had that went out the window because they’re in a moment of stress and they can’t remember things. We were able to work with the family, they got access to the app, read through information at their pace, organized their thoughts, and there are even guidelines on how to have medical conversations with the team. And that was able to help prepare them for rounds the next day. So when the physician team came around, they were ready to go and they had all of their thoughts organized. They were able to reach out and say, “This is exactly my question, and this is what I would like to find out for today’s plan.”
And that family came back to the child life specialist and said this, “This was essential. I would not have been able to organize all of this beforehand.” So it really helped there. It was kind of like a virtual complex care binder for them.
So that’s patient-specific and then practice-specific. We’ve been able to utilize it for our multi-specialty clinic and our physician team. One of our groups, the genetics team, has asked us that we put some very specific things because they want families to come into their genetics appointment informed and not stressed, or as minimally stressed as possible. So we’ve built out some resources. Here’s what to expect during this clinic appointment. Here’s what’s not going to happen. Don’t worry about that. That’s not going to happen. Here are pictures of the facility just to allow people to feel more comfortable. So it’s allowed us to really extend the reach and allow parents to come in more informed and less stressed. And when parents are less stressed, they are much more able to be partners in care and be there for their kids.
Carol Vassar, podcast host/producer:
Annie, I’m going to ask you the same question. Patient story, somebody you’ve worked with that kind of helps to inspire you moving forward in your child life work.
Annie Gunning, Child Life On Call:
Let’s see. I’ve worked with so many kids over the years. Recently, I feel like one of my, I guess, really impactful interactions that I’ve had I’ve been working with a child in the community. I think it kind of goes with Child Life on Call. I feel like the non-patient is a really important part of the patient’s life. We have to support the whole family, the siblings, and the parents. So I work with a lot of siblings, and then I work with a lot of children in the community who are not in the hospital. So I go to their home.
And I have a little girl that I’ve been working with, and our goal with her is to do G-tube changes at home because they’re super traumatic for her when she goes to GI, and they have to change them every three months. She has a very hard time with that. And we’ve been able to, through me going to see her in the community at her house and working on a coping plan, we talk about her worries, her anxieties. We do therapeutic activities and education. We’ve been able to do G-tube changes at her house with her mom and one provider. So there’s only three people in the room and her, and she gets lots of choices. She’s in control of where she wants to lay, how she wants the room to be, and who she wants to do it. And that’s a huge empowerment situation for a child as opposed to she goes to GI, and it doesn’t go as well, and it’s really scary and really terrifying.
So I feel like that has been a huge just impactful thing that we’ve been able to do this and give her success and her mom success at home.
Carol Vassar, podcast host/producer:
Katie, you serve all types of complex medical cases. Is that true?
Katie Taylor, Child Life on Call:
Yes. We have resources and child life expertise that we know child development, psychosocial care and trauma-informed care. So, for us, almost the diagnosis or condition is a part, of course, what we’re teaching and how we’re educating, but we really look at the family as a whole. So yes, you could say that.
Carol Vassar, podcast host/producer:
So the family as a whole really does benefit from all of this, doesn’t it?
Katie Taylor, Child Life on Call:
Yes.
Carol Vassar, podcast host/producer:
Is there a patient story? Is there a story?
Katie Taylor, Child Life on Call:
Well, I was thinking you were asking them about what inspires them to keep moving forward. And for me, a few weeks ago, we did a live masterclass for parents on how to implement comfort positioning, which is basically where the parent takes on the role of securing their child very safely during a procedure instead of the child having to be held down on a table, which causes so much unnecessary trauma.
And after the live session, the next day, I got an email from a mom that says, “We’ve already used what you taught us last night in the cardiac clinic, and it made a world of difference for my son.” And that kind of connection, that aha moment that that mom learned something, felt empowered to advocate for it, it actually happened, and that all happened without child life in the room, but child life was still a part of it because we were able to be a part of the education. It just really affirms that this education can make a difference and we can expand child life even further.
Carol Vassar, podcast host/producer:
Where do you see the app, the podcast, all of this information, and the services that you provide going in the future?
Katie Taylor, Child Life on Call:
Yeah, I really hope that any parent who feels unsupported or scared taking their child to any healthcare appointment feels like they have something to fall back on now. They have Child Life on Call. They know they have resources that are vetted, evidence-based, and can truly make a difference. I don’t want any parent to feel like they’re alone through their journey. Often, we say we like Child Life on Call to feel like the hug that’s like, we’ve got you. And so you can get your kid.
Carol Vassar, podcast host/producer:
Katie Taylor is a certified child life specialist and the founder and CEO of Child Life on Call.
Many thanks to our guests today, Dr. Maria Mascarenhas, Katie Taylor, Annie Gunning, and Jamie Gentille, for sharing their expertise and insights. And thanks to you for listening.
How do you see access to healthcare being enhanced by technology like Child Life on Call? Leave us a voicemail at nemourswellbeyond.org. That’s nemourswellbeyond.org, where you may also find our previous episodes. Subscribe to the podcast and leave a review.
Our production team this week includes Cha Parker, Susan Masucci, and Cheryl Mann. Join us next time as we talk about more ways that modern technology is enhancing healthcare for the smallest of babies. I’m Carol Vassar. Until next time, remember, we can change children’s health for good well beyond medicine.
MUSIC
