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Tiffany Kaczorowski: Welcome to Inside Pediatrics, a podcast brought to you by Children's Hospital of Alabama in Birmingham. I'm Tiffany Kaczorowski. Today, we're talking with Dr. Brad Troxler, who is Director of the Pediatric Pulmonary Center and Medical Director of the Pediatric Sleep Disorder Center at Children's. He's also an associate professor at UAB, the University of Alabama at Birmingham. We're also talking with Linda Russo, who is family faculty with our Pediatric Pulmonary Center, a respiratory therapist by training and a parent of a now young adult with chronic healthcare needs. Welcome, Dr. Troxler and Linda.

Dr. Brad Troxler: Thanks, Tiffany. Glad to be here.

Tiffany Kaczorowski: So tell us about the pediatric pulmonary center and the role that it plays here at Children's for parents and for kids. This is not just a typical kid is coming in for their pulmonology appointment.

Dr. Brad Troxler: The Pediatric Pulmonary Center is actually a grant-funded center through the Maternal and Child Health Bureau. There are six of them across the country, and we're one of the six and have been since, I think, 1979. And one of the great benefits of the PPC or Pediatric Pulmonary Center is that it has an emphasis on multidisciplinary care and particularly the idea that family is a critical piece of providing the best care for our patients.

About seven years ago I think now, the PPC kind of asked us to get families more involved and actually become full partners with our families, being a full faculty member. We were very fortunate to recruit Linda to join us.

Tiffany Kaczorowski: So Linda, tell us about your role with the PPC.

Linda Russo: I started with the PPC as a respiratory trainee and absolutely fell in love with the faculty, the program and being at Children's. And then they asked me to stay on as the family faculty, and I've been with them ever since and worked on so many projects. And now, I have family trainees and it's just an amazing program.

Tiffany Kaczorowski: Having a child with some chronic healthcare needs, you're fully aware of some of the issues and some of the overwhelm that parents may experience when they come to the hospital when they come in for appointments. And so you guys have actually developed some videos that will be shown to those families, to those parents and caregivers. Tell us about the need for that training and for those videos.

Dr. Brad Troxler: Well, I think it really started with the idea, as you mentioned, that it's overwhelming when you're diagnosed or your child is diagnosed with a chronic healthcare problem. But we realized that those same people are the best advocates for their children and more broadly for changing the healthcare system.

So working with Linda and the PPC, we really recognize the important voice that families have. And we wanted to help develop tools to give them their voice more powerfully. And so toward that end, we sat down as a group and began to develop these modules, which became ultimately the videos you're talking about to basically take the experiences of a family when they're first diagnosed, kind of how to cope in that first hospitalization, how to cope with having a child with chronic illness and then how to become an advocate and how to take your experiences to really change not just your child's health or maybe not even just your visit at the doctor or in the hospital, but more broadly to the healthcare system. And really, it's been a great journey that Linda and I have been on for what feels like longer than we expected.

Tiffany Kaczorowski: So Linda, tell me about your role and some of the important aspects of those videos and the training that you offer to parents and caregivers.

Linda Russo: So as I developed the modules with Dr. Troxler's vision, we have a patient family advisory council within the PPC that's made up of parents of different pulmonary diagnosis.

Tiffany Kaczorowski: And, you know, as a parent yourself, what do you feel? What are your concerns? What are some of the most overwhelming things, some of the experiences that the parents are having when they come to the hospital and find out that their child has a chronic illness that they'll have to manage?

Linda Russo: I think the main thought about all these videos and what we're trying to portray is that when this occurs, you're not alone and how to incorporate that and not feel alone. It's a new language that's being thrown at you, the medical world, and there's so much to learn. Just be patient. Talk with everyone. The communication is key and to build the trust between everyone.

Tiffany Kaczorowski: Yeah. And being able to advocate for your child, right, with the medical team.

Dr. Brad Troxler: Absolutely. I think, Linda, even began to think about even the language we use is sometimes so foreign to many of our patients and their families. When you first enter the medical system, you may not know what rounds are. You may not know what's the difference between an attending physician or a specialist and the intern or medical student who you're seeing most often actually. And so really just starting from that kind of baseline of the vocabulary you might need all the way up to what are the emotions that are kind of going through the family as you're grappling with this. And I think Linda really pointed out the idea of not being alone and really being the voice for your child who may not have that ability to even speak yet, given their age.

Tiffany Kaczorowski: And then navigating and coping with being in this huge place and parking and visitors or lack thereof, you know, during the pandemic and then also having that child with the newly diagnosed illness. And so I would imagine you guys have a team of people who can work with these parents and talk to them about some of these things in addition to the videos themselves.

Linda Russo: Yes. We have a great team within the PPC and then Children's in general. The child life specialists and social work does a great part. We have the nutrition aspect. So yeah, we do have a great team.

Tiffany Kaczorowski: Yeah. And then, Dr. Troxler, you mentioned not just being an advocate for your child within the healthcare system, but then also in the community, possibly at the state level. Tell us what that would look like.

Dr. Brad Troxler: So I think you're right. We kind of envisioned this idea of almost like once a rock is dropped into a still water, you get that initial splash and that's coping with that first visit first hospitalization, and then the ripples go outward.

And so maybe the next step is you've made it through that first hospitalization, now you're dealing with a chronic disease. And what does that feel like? What is that like? And for many people that may be as far as they get. It was just, "Let's make it through the day to day. Let's make it through this week, this month, this year."

But then there are some people, Linda being a great example, who had the ability to take on even more and realize that the issues that they face with their child's illness are not unique to them or maybe not even unique to the disease that their child has. And so then they can begin to build coalitions and work together to organize, to advocate as a group. Maybe it's in conjunction with the AAP, maybe it's in conjunction with Children's or maybe it's just actually directly working with the legislatures or others to try to affect change. And certainly, we've seen some bills go through our state legislature that parents have really been the driving force to make it happen.

Tiffany Kaczorowski: Absolutely.

Linda Russo: The third video, it showcases some young adults, two in particular that have gone that extra mile and achieved that level of advocacy for themselves. And that's the greatest part of all this when it comes to that.

Tiffany Kaczorowski: So yeah, you guys are seeing, you know, kids that come in, babies that come in, eventually they become young adults and then they transition maybe over to UAB or the adult side. You know, they might be thinking to themselves, "I want to advocate for kids just like me."

Dr. Brad Troxler: Right. Or even more broadly for the other kids who struggled with other problems. I mean, I think that's what's really the goal and vision is if we could take the expertise that Linda and our family kind of advisory council have and the lessons they've learned and to be able to share them with folks was really the vision and the driving force behind what really started this project.

Tiffany Kaczorowski: So the end goal, I guess, internally you guys do have these video modules that parents and caregivers, and I'm assuming the kids can watch. Also externally, there are some resources that are available if parents have recently discovered their child is diagnosed with a chronic illness. Can you give us some of those examples of some resources that you typically recommend?

Depending on what condition a family is dealing with, there's likely to be a website perhaps linked to a foundation. Ones that I'm most familiar with are neuromuscular diseases like Cure SMA or the Muscular Dystrophy Association, or certainly the Cystic Fibrosis Foundation, all have great information about kind of family involvement, about patient, about the disease process and progress. Then more broadly, there's other organizations that aren't disease specific that I think Linda knows more about than I do.

Linda Russo: Yes. One that I would like to highlight is called family voices. And then there's a family to family information center that's here in Alabama. They have one of those in each state, but ours is great for the newly diagnosed and then as you progress with the chronic disease.

Tiffany Kaczorowski: What would you say to other parents who might be trying to navigate this system or who might be trying to figure out where to go?

Linda Russo: Well, I started with the child with the diagnosis, like you said, and then go into all the different doctor's appointments and seeing that and knowing that I knew nothing about the medical world is where I started.

And I guess I would tell parents to reach out to your healthcare providers. They want to help. They do this every day and they're working just to make your child better and make your life better. That's their main goal. They're there to help you. They have resources for you. And so just ask them, talk to them. Don't be shy about that. And there's a lot of advisory councils that are out there for you to lend your voice, to share it, to let them know how they can help, how they can improve things for you. And in the PPC, we have training programs and we have family trainees where you share your voice with other healthcare professionals as they begin their journey to care for your child and for you.

Dr. Brad Troxler: I'd just like to echo some of what Linda said is just when you're with your child at your healthcare provider's, speak up. If you don't understand, ask the questions. And that's the first step to really becoming an advocate for you and your child, is to ask the questions and start to find your voice.

Tiffany Kaczorowski: Thank you guys so much for being with us today.

Dr. Brad Troxler: Thank you.

Linda Russo: Thank you.

Tiffany Kaczorowski: Thanks for listening to Inside Pediatrics. More podcasts like this one can be found at childrensal.org/insidepediatrics.