Transcription:
Sensory Awareness

Dr. Corinn Cross (Host): Welcome to Peds Cast, a podcast brought to you by Children's of Alabama. I'm pediatrician Dr. Cori Cross. Today we'll be speaking with Dr. Michelle Kong. Dr. Kong wears many hats at Children's of Alabama and University of Alabama Birmingham.

She's a Pediatric ICU Attending Physician. She's a Physician Scientist and an NIH researcher. She's a Co-Founder of an international nonprofit Culture City, but today she'll be speaking with us as the Founder and Medical Director of the Sensory Integration Program at Children's of Alabama. Dr. Kong, it's such a pleasure to speak with you. Thank you for being here.

Michele Kong, MD: It is my honor to share this time with you as well.

Host: So tell us, what was the impetus behind the Sensory Integration Program? How did it come to be?

Michele Kong, MD: So we started the Sensory Integration Program in 2016, and we actually piloted the program first, in our emergency room. It, it because there was a realization amongst the care providers as well as institutionally, I think, that there is a gap in the way that we manage our patients who have sensory barriers and challenges. And honestly, this pathway and program was triggered by families and children that we saw where it was very clear that they had different barriers that was related to their communication, their social interaction, and also their sensory challenges, that was making it different and, potentially difficult for care providers in managing and in diagnosing their acute illness when they presented to our emergency room and our hospital.

room.

Host: Okay. And so then these are patients who not necessarily have a sensory processing disorder, but may also have other comorbidities or other underlying conditions that are creating these barriers to care. Is that correct_

Michele Kong, MD: Yeah, so that's absolutely right. You know, some of the children will have an actual sensory processing disorder, but actually what we've realized is that a lot of them may not, and actually some of them may even acquire the sensory sensitivity while they're in the hospital. When we look across the patient population, it's actually a rather wide spectrum of children. We have seen it across the age spectrum and it can be anywhere. In fact, we actually did a survey of our patient population and we saw that it can affect, you know, children as young as two to three years of age up to those who are even teenagers and the prevalence, of course, is even higher in certain patient populations such as those with autism, with ADHD, Down Syndrome. Fetal alcohol syndrome is another big one, or those with a history of prematurity. But I think what's really important about this is that what it means for us as medical providers is that across all specialties, you know, I'm an ICU doctor and I see it in my ICU, but you can be a pediatrician and you see it in your practice, or a emergency medicine doctor, might see it in the ED. Or it might be a patient who's coming in to our operating room for a procedure. So the scope of the problem is actually quite wide because it spans this really large patient demographic and we are bound to encounter them within our practice across the scope of settings.

Host: study. Now, do we have an idea of what percentage of patients might experience these barriers?

Michele Kong, MD: That's a really good question. I think it depends on who we are looking at. So if for instance, you're looking at children with autism, then it's almost going to be a hundred percent because part of being diagnosed with autism is that you have a sensory barrier. But it can vary depending on the sort of what your comorbidity is.

But also what was really interesting is we've actually seen it in previously healthy children who are coming into the hospital for an illness. And what we've seen is that you can actually acquire it in hospital.

Host: So there are other Tthings that someone can have a predisposition for. And if put in a circumstance that increases stress level or either physically or emotionally, it can, if you're on that cusp, it can push you over. And we know that with other disorders. Do you think that these issues with sensory processing, that perhaps a child could maybe have the predisposition but having never had these overloads before cause coming to a hospital, nothing short of sensory overload for almost everybody between the sounds and the lights and everybody touching you and putting on different clothes, like all of that is a lot. Right. So is it possible that this could push you if you were predisposed?

Michele Kong, MD: Absolutely. I think that's exactly it, because if you think about sensory processing, what does that even actually mean, right? Sensory processing is a very general term that basically refers to the continuum of interaction, where our brain is able to take in all this different sensory input, whether it is auditory, visual, tactile, whether it is olfactory, propreceptive, or vestibula. And then what we do is that we take all these different inputs and then we create a behavioral response to it, and our brain is able to receive it. We modulate it, we discriminate it, and then we organize it into an appropriate response. So when someone has sensory barriers or challenges, they can be either an over responder or under responder.

So what I mean by that is, for instance, if you are hypersensitive or you're someone who's sensitive, noises can be too loud, lights can be too bright. An under responder would one who, for instance, you might be calling my name, but I don't respond to you. Or you might be giving me a lot of tactile input, but I don't feel it, I don't feel pain.

And so you might be a child or a person who's experiencing your sensory inputs in those various ways. And the beauty of our brain is that we can sometimes adapt and we can compensate. We can make it make sense, right? And so you might imagine now like for instance, a child who is sensitive to noise, for instance. At home, maybe it causes them to be a little bit dysregulated, but they can cup their ears or they may wear headphone, but now suddenly you put this child in a setting where they're entering a new environment, i.e. a hospital, where the people are different, the routine is different, the smells are different. The whole entire environment is different. And so it can definitely be the thing that then tips them over where they become very dysregulated and unable to adapt and cope with the situation.

And on top of it, they don't feel very good, right? Because that's a reason why they're coming to the hospital, you know, whether they have a broken bone or they have an ear infection, they have pneumonia and things like that. And so that is really the whole mission of our Sensory Integration Program at Children's is to say, understanding that these patients exist and understanding that they have these challenges at baseline. How do we adapt our care? How do we teach our providers? How do we change our environment so that we can be responsive to them? We can meet them where they are and provide them the care that they need and the positive experience for them and for their family.

Host: How do you identify which patients can benefit from the program? Is it an input form you have? Is it from parents feedback? How do you do this.

Michele Kong, MD: So there's several ways that we can identify these patients. One is from the family and from the patients themselves. So if you have a family that knows that this child has a sensory need, or has a communication barrier, they can self-identify and say, hey, I want to have access to these resources and these tools, and that can be available to them.

Obviously, in order for that to happen, we did an inpatient and hospital-wide, sort of set up where it is very obvious to the family that these resources are there and available to them should they need it. So that's one way that they have the resources available to them is by self-identification.

The other way is by the provider realizing in their assessment, seeing that this patient may benefit from the resources. So, for instance, it may be somebody that I see, in the emergency room and this child is bouncing up and down and really having a properceptive need. If I am in this space, and I know that, okay, that may be part of the way that the child is using sort of the bounciness to try to regulate themself. Me as a provider, because I understand that, I'm going to integrate that into my physical exam and in my engagement with the child and incorporate it, versus saying, oh, no, can you please be still, please sit on the table, or please come sit on this exam chair. So really, when you think about the program, a big foundational piece of it is the education piece, which is we educate frontline providers, not just the physicians, but the nurses, the RTs, anyone who's really patient facing and who will be touching the patient, or have any sort of interaction with the patient. I think the other beauty of it too, is the understanding that it can be at any point during the hospitalization or during the hospital visit. So you may come into the ED and let's say nobody realizes it, or the patients didn't self-identify, by the time you come to the inpatient unit, a nurse might identify the need or a physician might identify the need, and we can still put the patient on the pathway and have all these tools and resources available. Ultimately, our goal is to say, how can we make this experience the best it can be? And more important than that, how can we move barriers to misdiagnosis and mismanagement, to provide the best care for this family and child.

Host: That's really interesting. And so, what type of resources are available? How is this different than a typical Child Life Program that many hospitals have? It sounds to me like you're educating all of the touchpoints that the child will have throughout their hospital stay, whether it be the nurses, the phlebotomists, the pediatrician, the surgeon, so that they can all identify, this is part of a spectrum of behavior, of needs and that we need to see it not as a barrier, but a way to work with them.

And so a lot of that is, like we said, education and learning how to examine and do the things that we need to do with this patient without further disrupting their sense of wellbeing. But also what actual resources, are there, tools you use, and are there people who come in to actually help? Like there are Child Life specialists.

Michele Kong, MD: So I think Child Life Specialists is certainly an integral part of any child's experience, whether they're on the program or not because, Child Life are incredible group of people that really has a lot of expertise in making that experiences positive and better for them despite the acute illness that the child and family might be experiencing.

But I think what is key is that understanding the important point that Child Life is not always there. And in fact, for this to work, it can never solely be dependent on one service or one person or one group. And that's our mission. While we do have those resources and these resources can take the form of certain sensory toolkits for instance, right?

So we provide toolkits to all the different units that's been onboarded and active, where they have noise canceling headphones, they have fidget tools, they have visual cue cards, and all of that. What is most important is the understanding of how to use these tools and also that the different level and different types of providers and care professionals understand how to engage these patients and how to interact with them because, if a child comes in at 2:00 AM and your physician, your nurse, your technician, or even your front desk person, if they don't have the awareness of what is going on, why the child behaves in certain way, and how to best engage with them; that experience is not going to be as good, right? That encounter may not be as good because Child Life is not going to be there at 2:00 AM. And for our care system to change, it can never be dependent on one set of discipline. It has to be everybody has to have a level of understanding of why this is important, what we can do, what are the tools that we can use, and how can we can use the tool.

Because a headphone is just a headphone unless you know how to appropriately use it, if that makes sense. The other thing that we also have is something called a mobile sensory station where we provide it to specific units and mobile sensory station is a really cool unit because it allows a space or room to be transformed into sort of a sensory room.

You know, some hospitals and certain spaces, we actually have a physical sensory room, but the mobile sensory station actually allows for a space to be transformed in a calm, safe space within that setting. So for instance, we could have one in the ED triage. We have one in our ICU, we have one in the inpatient unit.

And, when a patient needs it, it's mobile so it can be transported to that particular patient and space. And, the unit actually has bubbles. It has sounds, it has certain lights, fiber optic strands, basically that gives a certain sensory input that can be used to help sort of regulate and calm the child who's going through that experience.

Host: That's amazing. As you were talking, I was thinking about my own experiences being in a hospital as a patient and, uh, wanting to put a sign on the door. Just be, leave me alone. I need of peace and quiet. You You know.

Michele Kong, MD: Yeah, so I that, that's an interesting point that you bring up because that's actually a really important piece which is if we have a sensory patient, for instance, right, that we have identified, we will actually put up signage that says, you know, sensory patient please ask nurse before entering, because, as you might imagine, oftentimes, you can have a child who's now finally, the lights are off, it's a little bit quiet. Child's getting regulated, and if people don't know, they just knock loudly on the door. They open it and they bust in and they're like, hi, I am, so and so, and then the whole moment is disrupted.

So signage is important. Communication is important. When I think about our sensory pathway and our Sensory Integration Program, what we do for our children and our patients, the big pillars of it is one, the tools which we have talked about. Two is communication. And communication is from the aspect of communication between provider to provider. So the way that I sign off to my fellow nurse, or my fellow attending to my next team that's coming up. So, I know the important information to relay, right? I'm going to say, Hey, these are John's strengths and these are the things that helps him calm down. He loves music, he hates noises. He loves it when you give him time. So that's an important piece of communication to tell the next persons coming on in terms of sign off, like, not to say John has a pneumonia and he's on 10 liters of oxygen. Yes. Those are important things to relay, but it's also just as important to say, John is really averse to loud noises.

We have to be thoughtful about how we talk around him with using the one voice technique and so forth. The other piece of communication is communication with the family. And what I mean by that is to say Mom and Dad, I understand that you are the person who knows this child the best, and I'm going to ask you the questions that's going to help me take care of your child the best. So we even teach this and what that communication looks like. So asking the appropriate question, we have to ask questions that relates to the baseline of the child. Yes, your child is sevenold, but what is the functional age? If I elicit that your child is more functionally like a three-year-old.

Well that will frame my engagement very differently cause I know even though you're a seven year old, the way you are is more of a three-year-old. So that will frame engagement in a different way. So teaching our providers in asking the family, in communicating with the family, what are the key questions to ask, you know.

And then the third is our communication with our patients. How do we communicate with them, saying things in a very concrete way. So for instance, instead saying, Hey John, it's really easy. No problem. Oh, hey Jane, it's easy. No problem. It's a piece of cake. You know, for someone who's a concrete thinker, it's a piece of cake, is a dessert. And so if you have a child who's NPO or not having anything by mouth and you're saying it's a piece of cake, well that might create a lot of problem, right? So instead of saying, Hey, it's a piece of cake, we teach them to be very concrete communicators and saying things like, it is easy. You can do this. Versus saying things like it's a piece of cake, or things like that. In the pillar of communication, those are the three angles. Communication with the fellow provider, communication with the family, and then how we communicate with our patients themselves.

And then the third one, I think, is our environment. How do we modify our environment so that we can best adapt to the situation at hand? And sometimes you're not able to do this because if the bed situation doesn't allow it, you just don't have that option. But if you do have that option, I might choose to say, I'm going to put this patient that I know is highly sensitive to commotions and noises and things like that, in a room that's further away from the trauma bay or further away from the nursing hub. Or I can be modifying the environment where I can say this is the room where it's going to be a little bit more dim, or as you said, with the signage and things like that.

Host: So I can imagine that this has been received wonderfully by both patients and their families. I am sure that it has made a difference to both patients and their families when they come into the hospital and during their stay, that they just feel more cared about and that their needs are being met more, and that it's a just more enjoyable experience of being in the hospital can ever be enjoyable.

My question for you is, as physicians, we love data, and I was wondering if it's been around long enough, if there's been any sort of data collected or looked at to see does this decrease in stress have any outcomes that are measurable; fewer complications, better adherence to action plans or medications, better patient satisfaction, something that you've seen?

Michele Kong, MD: We actually published our experience here a few years ago when we first piloted in the emergency room and as we were going into inpatient. And, what we were able to elicit from our experience then was that it was widely across each spectrum. And that was also when we was able to show that sometimes you can come in without any sort of sensory barriers and then you acquire it while in the hospital.

And I think that's an important point because it puts everybody sort of on the proactive side and to be really having open eyes and ears to see how we can best help our patients. We haven't published it here yet. We're in the process of writing this up in terms of outcome changes.

But if you look into the literature, studies have shown that it can decrease your use of sedatives, for instance, right? Where if you know how to interact with a patient who is perhaps, so just imagine a scenario when the child comes in. And, perhaps they're a little bit dysregulated and if you don't understand what's going on, and we've certainly seen this many times, they may get restrained or they may get held down and that on top of a communication barrier and a sensory overload and not feeling well, sometimes it can escalate to even more difficulty and sometimes that may end up leading to medications being used, and anecdotally we have seen it in our experience that we are able to use less medication. The patient experience is definitely significantly improved. We have a lot of patient feedback where we have seen themes of my experience is improved, I feel more included. I feel safer. Those are big themes that have come out, but we're actually in the process of writing another follow up paper. So be on the lookout for that one. And I can certainly send you the other one that we have already published.

Host: That's so interesting. I mean, it seems like Children's of Alabama is on the cutting edge of really recognizing this and seeing the potential to implement it across the board at the hospital and really change patients' experiences. I would assume you anticipate other hospitals across the country eventually adopting this type of programming.

Michele Kong, MD: I think it's been really wonderful. We have done a lot of it throughout the community with our urgent care centers, with outpatient clinics and so forth, and certainly has been adopted in other hospital systems, as well. UAB Callahan, is actually, one of Culture City's partners and they have also done a really wonderful job with making sure that the UAB Callahan Hospital is trained and all the community clinics within the Callahan System is also trained. So the resources are also available to the patients. The key is also understanding that this is not just for pediatric patients. I mean this is for entire age spectrum, cause you can have, for instance, veterans with PTSD. We also see this a lot in the older population with dementia or Alzheimer's, where they can have a lot of sensory issues and it's been very impactful for them as well.

Host: Well, this has been so educational. I really appreciate you spending the time talking with us Dr. Kong. Thank you for sharing your expertise with us today.

Michele Kong, MD: Yeah, it was my pleasure to do it. It was great speaking with you.

Host: For more information or to refer patients to Children's of Alabama, visit children'sal.org. That concludes this episode of Children's of Alabama Peds Cast.

If you found this podcast helpful, please share it on your social channels and be sure to check out the entire podcast library for other topics that might be of interest to you. Please remember to subscribe, rate, and review this podcast. Thanks for listening to this episode of Ped's Cast. I'm your host, Dr. Cori Cross.