EPISODE 250

[OVERVIEW]

[00:00:00] MD: Okay, so for today's gratitude journey, I don't honestly know how to sum this up. I am grateful for the philosophy of servant-led leadership. To me, servant lead leadership, while I interpret it as tithing of my time, and it's also spiritual and faith-based for me, it doesn't have to be. When I think of servant-led leadership, it means someone who's willing to lead a group of individuals in any capacity of life. But not only do they sit and talk about it, but also, they take action, right? They're on the front lines, whether that be handing out backpacks to youth in need, whether that be collecting donations for a colleague whose house has burned down, whether that be, I don't know, actually leaving a think tank. There's so many different ways that that could be interpreted or perceived. But I am grateful for the training that I have taken to learn more about that, but also for the women that I have seen that demonstrate that.

Because watching my colleagues live that life and perpetually demonstrating it, in not just their professional, but also their personal lifestyles, it helps me want to be a better human. So, I am grateful for servant led leadership and those who embody it. Y'all, today's guest shares anything and embodies it. So, I know you're going to enjoy the talk with Dr. Meg. But if you have that person in your life that you see, model that, go tell them thank you, because they probably need to hear it. So, you people know who you are in my life and I'm trying really hard not to cry, but thank you.

[INTRODUCTION]

[00:02:38]  MD: Hi, folks, and welcome to First Bite: Fed, Fun and Functional. A speech therapy podcast sponsored by SpeechTherapyPD.com. I am your host on this nerd venture, Michelle Dawson, MS, CCC-SLP, CLC, the All Things PEDs SLP. I am a colleague in the trenches of home health, early intervention right there with you. I run my own private practice, Heartwood Speech Therapy here in Columbia Town, South Carolina and I guest lecture nationwide on best practices for early intervention for the medically complex infant, toddler, and child. First BiteÕs mission is short and sweet, to bring light, hope, knowledge, and joy to the pediatric clinician, parent or advocate.

[00:03:26] EF: By way of a nerdy conversation, so thereÕs plenty of laughter too.

[00:03:30] MD: In this podcast, we cover everything from AAC to breastfeeding.

[00:03:34] EF: Ethics on how to run a private practice.

[00:03:37] MD: Pediatric dysphagia to clinical supervision.

[00:03:40] EF: And all other topics in the world of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts.

[00:03:49] MD: To break down the communication barriers so that we can access the knowledge of their fields.

[00:03:55] EF: Or as a close friend says, ÒTo build the bridge.Ó 

[00:03:58] MD: By bringing other professionals and experts in our field together, we hope to spark advocacy, joy, and passion for continuing to grow and advance care for our little ones.

[00:04:09] EF: Every fourth episode, I join them. IÕm Erin Forward, MSP, CCC-SLP, the Yankee by way of Rochester New York transplant who actually inspired this journey. I bring a different perspective, that of a new-ish clinician with experience in early intervention, pediatric acute care, and non-profit pediatric outpatient settings.

[00:04:30] MD: Sit back, relax and watch out for all hearth's growth and enjoy this geeky gig brought to you by SpeechTherapyPD.com.

[DISCLOSURE]

[00:04:45] MD: Hey, this is Michelle Dawson, and I need to update my disclosure statements. My non-financial disclosures. I actively volunteer with Feeding Matters, National Foundation of Swallowing Disorders, NFOSD, Dysphagia Outreach Project, DOP. I am a former treasurer with the Council of State Association Presidents, CSAP, a past president of the South Carolina Speech Language and Hearing Association, SCSHA, a current Board of Trustees member with the Communication Disorders Foundation of Virginia. I am a current member of ASHA, ASHA SIG13, SCSHA, the Speech-Language-Hearing Association of Virginia, SHAV, a member of the National Black Speech Language Hearing Association in NBASLH, and Dysphagia Research Society, DRS.

Additionally, I volunteer with ASHA as the topic chair for the Pediatric Feeding Disorder Planning Committee for the ASHA 2023 Convention in Boston, and I hope you make it out there.

My financial disclosures include receiving compensation for First Bite Podcast from speechtherapypd.com, as well as from additional webinars and for webinars associated with Understanding Dysphagia, which is also a podcast with speechtherapypd.com. I currently receive a salary from the University of South Carolina in my work as adjunct professor and student services coordinator, and I receive royalties from the sale of my book, Chasing the Swallow: Truth, Science and Hope for Pediatric Feeding and Swallowing Disorders, as well as compensation for the CEUs associated with it from SpeechTherapyPD.com. Those are my current disclosure statements. Thanks, guys.

[00:06:43] EF: The views and opinions expressed in today's podcast do not reflect the organizations associated with the speakers and are their views and opinions solely.

[INTERVIEW]

[00:06:51] MD: All right everybody, y'all, we have absolutely one of the world's lead researchers in Pediatric Feeding and Swallowing Disorders and Caregiver Engagement on today. I am so over the moon and stars excited and humbled that she's gracing us with their time and her talents. We got a lot of ground to cover, because this woman has done a lot of research. When I was like, ÒSend me some resources.Ó She sent me her own bibliography page of all of the things that she's collaborated on, and research truly is collaboration. I was like, ÒOh, my God, look how many lives have been positively impacted by this.Ó That is just a very cool and humbling thought.

So, without further ado, and I'm really trying hard not to butcher this, but we all know multisyllabic words are not MichelleÕs strong strength, strong points, stronghold, something like that, words are hard. Anyways, I have none other than Meg Sim Ð damn it, Simione. Did I do it?

[00:08:00] MS: Well, I loved it. You did it with a little bit of an Italian flair to it. For all the Americans here, Simione, but I love it. I love how you said it.

[00:08:11] MD: I find it really hard because you said it's a time. So, I was like, ÒErin would do it this way.Ó Thank you for letting me not speak English well. It is my first and only language, but it's hard.

[00:08:25] MS: Like really hard.

[00:08:28] MD: So, Meg, aside from being incredibly gracious that I can't talk, is a phenomenal speech language pathologist. For those of you that don't know her, she's a clinician scientist with a focus on infant and child feeding and growth, in implementing innovations to improve care delivery. Y'all, she's a Research Scientist with the Division of General Academic Pediatrics, at Massachusetts General Hospital, MGH. And she's also an instructor of pediatrics at Harvard, which I can say Harvard, that's like kind of amazing.

But we're talking about a topic that is caregiver, coaching caregiver empowerment, that psychosocial component, that domain of PFD is just so incredibly not addressed, but so important. I say not addressed because big picture, if you're listening to it, time of reference, we're in the tail end of August 2023. We haven't even had the PFD diagnosis for two years yet, officially, because ICD-10 code came out in October 2021. If we look across at the academic setting, very few of our colleagues had exposure to ICD-10 code PFD, and very few current academic instructors actually come from the world of pediatrics when they teach that peds dysphagia class. So, they don't have that firsthand knowledge and experience which isnÕt wrong, it's just different. That means that we have to work that much harder that when we're addressing those four domains, that we give that psychosocial domain justice, because that one's a tricky one to teach in our world.

There's my backstory. Hi. I had a pot. I had to trip all over.

[00:10:27] MS: Well, hello, Michelle, and thank you so much for having me. Thank you for the wonderful introduction. Anyone who knows me knows that my cheeks are bright red right now, and I'm blushing. But I'm really just feel so honored and privileged to be here, and so excited to talk about these things. I love that you bring up this Ð one of these lines of research that I have in regards to really thinking about other impacts of the child in the family.

When I started this line of research, I was like, ÒPeople know this, like, we know it's hard for the family. We know it's hard for the child. Do I really need to do this research?Ó I was like, ÒWell, it's good to have it documented versus kind of, what as clinicians we were seeing.Ó But then, as I was starting to talk about the results in sharing them, there are two kind of memories that pop up is, I was presenting the results of one of the studies, which I'll probably talk about in a little bit. Then, we were asking families about how their child having a pediatric feeding disorder kind of impacts their day-to-day life and kind of the bigger picture of social participation.

So, what I was going through was qualitative. I was going through the findings and pause for questions and I didn't realize a mother Ð there were parents in the audience. I thought it was all clinicians and researchers. She got up and she was sobbing. I was like, ÒOh, geez, have I said something wrong?Ó What she said was, Ôthank youÕ. Thank you for putting this out there that this is what we've been experiencing. Most people, sadly, most health care professionals who they Ð who she would interact with them for many of our families didn't believe her, didn't recognize how hard for family members. I always remember that, that I'm doing this for the families.

Then, second was, I was at ASHA and I think it was a post Ð I think it was a poster presentation. I think it was a poster, and in a clinician had come up. She was a pretty new clinician working in early intervention and in Ð

[00:12:42] MD: EI. I love EI. Yes.

[00:12:44] MS: So, I'm going to go back to EI, because I think EI, in my experience with EI is why this has been such an important line of research for me, and talking about kind of barriers to families achieving their goals. Some of them are more financial in time and whatnot. And this new clinician said, ÒOh, I've never considered those things. When I'm working with my families on feeding, they're working very much on skill development.Ó Which is critically important, right? My early research was on that and I'm still passionate about it. I still love chewing to death, probably more than any person who love chewing. But I really felt like I needed to expand that. 

Then, I also remember that, that what is obvious to maybe me and other clinicians may not be obvious to all of our clinicians, because like you said, not all of them have had a four-credit course in graduate school, or have had a mentor or supervisor to give them that training. So, those are those things that I go back to when I'm like, ÒDo I really need to do this?Ó Yes, I think we do. Ultimately, those are kind of the next steps I'm thinking about is how do we more widely disseminate and get people to really make sure that they're asking about the family and all of those impacts.

[00:14:14] MD: Yes. Okay. So, this to me, knowing your drive, like it makes sense, like why you tied your time working with Feeding Matters. It makes sense why that's a perfect Ð it's an extension of who you are as a researcher, but also as a human, because Feeding Matters put so much Ð wait, people may not know. She's past chair for the Ð you were convention chair for Feeding Matters for this past spring 2022.

[00:14:48] MS: Past two years.

[00:14:48] MD: Two years? ThatÕs a lot.

[00:14:54] MS: I planned a convention for SCSHA on more than one occasion, so Ð

[00:14:59] MD: I hope somebody bought you a whiskey or whatever, pick your poison.

[00:15:06] MS: When you're planning these, you have to review call for papers, you have to find invited speakers, and you have to make sure research is current. ThereÕs so much. Yes, thank you.

[00:15:18] MD: Okay, wait. I want to start at the beginning, beginning. What made you want to be a speech pathologist? 

[00:15:24] MS: Yes, great question. This is great, because then I'll be able to kind of work in some my early intervention. Why did I want to be a speech pathologist? It was in high school, and I was like, ÒI love language. But I also love science. So, what is a profession that I can blend both of those?Ó And I don't think most high schoolers know exactly what speech-language pathology is. I was a little kid who went to speech therapy. I'm sure everyone can hear it in my S, right?

[00:15:58] MD: No.

[00:15:58] MS: I never would have picked up on that. So, it comes out. I do have to say to my Boston accent occasionally comes out too. But that's an accent that was not a disorder. 

[00:16:12] MD: Ð but I think itÕs beautiful for my Ð

[00:16:17] MS: So, I was really thinking about it. I decided to apply for Ð oh, and then, one of my high school, he was the drama teacher. And when he was deciding, he was actually had thought about becoming a speech-language pathologist. So, he had talked to me about it, and he was just so cool. We called him Q. I was like, ÒOkay, I think that's what I wanted to do.Ó So, I only applied to schools for speech pathology. I did my undergrad at Boston University. It was so nice at Boston University. I was given some experiences to help out with research. I was like, ÒI love this. This is amazing. This is like my people. I get this.Ó

I do have to say, it's so funny. I didn't realize this till I was a PhD student. My sisters and I were first-generation college students. So, like this idea of like, going to school and then getting a master's, and going to PhD, and kind of other jobs beyond what you see in your day-to-day life wasn't really what I now realized on my radar. Or, how to build a trajectory like that. Most of my life, you will see it, just kind of like came about. I like to think that that has made me who I am. But I also like to acknowledge that because it's just such a different experience for first-generation college students. 

So, went on for my masterÕs, and I finished my masterÕs when I'm 22, and here I am, I make a grand plan for life, because that's what you do at 22.

[00:17:58] MD: Mine bit the dust, but man, it fun going down.

[00:18:02] MS: At least I'm humble enough now to be like, ÒWow, boy, was I wrong about my grand plan.Ó

[00:18:08] MD: Okay, also, if you're listening, when everybody's getting engaged at the same time at 20, and 22, and 23, you don't have to. If you need their permission, you don't have to marry the high school or college guy. You do you. Okay, continue. But if you do it and it works, congratulations. Otherwise Ð

[00:18:29] MS: Yes. Don't we think we know it all then? So, the grand plan was to go work at my CF. But a CF, it was nine months, so I would need to be a little bit, understand more. I'm saying all of this and if you can see my face, I'm doing this with like a look of awry on my face. I would need one more year experience to be the expert clinician. I'd work for two years and then go back and get my PhD. That was the grand plan.

I finished school, I was in Chicago, moved back to Boston, and it was in grad school that actually my love of feeding came about. Because I entered grad school thinking, ÒI love research. I love neuro. I love speech science. So, I have to work with an adult population.Ó And it was in grad school that I discovered, ÒOh, wait, no, I don'tÓ, and I had wonderful mentors there who really helped me understand like the wonders of PFD. Came back, was able to find a wonderful mentor here in the Boston area to help me with really learning about feeding, and then also doing that, and then life was happening. So, I didn't quite go back for my PhD, but instead, I was able to open my own private practice and I was like, ÒOh, that will kind of satiate this need for doing something a little bit different.Ó So, I had my own private practice for eight years, but it just kept coming back.

Even though all of my friends and colleagues would tell me, ÒDon't get a PhD. It's torture. You're not going to like it. Blah, blah, blah.Ó Everyone kept telling me, ÒDon't do it. Don't do it. Don't do it.Ó But I was like, I have to stay true to me. It just keeps Ð every time I try to avoid it, it just keeps coming back. So, I finally went back when I was in, let's see, I was 30 Ð I was in my mid-30s. I think I was like 35, 36, which is also a little bit crazy to essentially, like have this second career when you're like 36 years old, and you have a successful private practice and blah, blah, blah. But it was the right thing for me. As soon as I went back to research, I was like, ÒAre you glad you did?Ó I was like, ÒYes, I found my people.Ó 

[00:21:04] MD: Yes, hi. It's like when your soul wakes up, and it's like, ÒYou're home.Ó

[00:21:08] MS: Exactly. That's really how my research journey has been. I wouldn't trade any of the experiences that I've had for anything, because all of those experiences have informed my research. So, that line of research we were talking about earlier around the impacts of family, I truly believe it was because I Ð two to three years, I worked in an early intervention, in low-income communities, and I really saw what it was like for our families who have children with disabilities. I would see families, or usually mothers, just mothers and children in shelters.

I remember distinctly going into a family's household. They had twins. Both of them had lead poisoning. One of them eventually got an ASD diagnosis. So, I'm painting that picture because they were really high energy, and I went in and their stove was open and on, but they weren't cooking anything. So, my father was in heating. I remember talking to him and being like, ÒWhy was your stove on?Ó He's like, ÒBecause that's how people heat their house when they can't afford fuel.Ó Suddenly, I'm realizing like, I'm asking them to work on an X, Y, and Z, and they're just trying to heat their house. It just started to click for me and that we needed to be more aware of what was happening in our families.

All of those things of working in early intervention, being a clinician, has so completely informed my research. So, I wouldn't trade it for a bit and I'm okay with my 22-year-old master plan going a bit awry.

[00:23:01] MD: I love that. Oh, my God. Okay. You said something that I think everybody needs to go back and focus on. When we're working with any families, whether it be PFD or anything else, if that familyÕs base foundation, if their house is not built on rocks, if it's built on sand, if itÕs shifting, they do not have the baseline capacity to do the one more thing. They can do the thing that they're doing for survival. So, wearing a professor hat, in any class I teach, I always work in the Maslow's Scale of Hierarchical Need. Because as I get choked up, we have to have the here. If we don't have the here, they can't move on.

But that also goes true for our students. If the students don't have the here, if your students are at a point of crisis, if they don't have secure housing, if they don't know how they're going to pay for the next semester, if they had whatever going on in their life, if their base isn't straight, then they're going to fall apart and not be able to hear what we have to impart.

So, y'all just filter this through. As we go through today's conversations, remember that like our caregivers are the key, and if they're crumbling, we won't be able to move forward, which is something that I just Ð I don't think that's addressed enough within the framework of the big nine. But I mean, add it to the list of things that I would like to change the world. ItÕs very beautiful list. I really think we should get rid of grass on the side of sidewalks and just plant bee flowers, like the plants, like natural Ð but whatever.

[00:24:55] MS: Well, I'm with you on the grass, a better use of land and water resources and all of that. But I more than anything I agree with you that we need to understand where anyone we're interacting with is coming from, whether it be our students, whether it be our collaborators, our co-workers, and absolutely the families who were working with. I mean, that was truly why I started on this line of research, which I'd love to Ð can I tell you?

[00:25:32] MD: Take me there. So, when we're looking at this, when we're looking at the caregivers, and what's going on, how do we assess what are you researching? And then how do I carry Ð huge question. And then how do I carry that over to the double wide trailer that I see on a Tuesday afternoon?

[00:25:52] MS: Yes, absolutely. So, I think first, let me start with telling you a little bit about some of the work that we've done, and this work has made me really think deeply about, what can we do? I don't know if I have all of the answers, and I would say, in my mind, it's a work in progress. Because one of the things I'm always thinking about is scale. So, maybe we can do something with a smaller population. But how can we scale that to like, all of the speech pathologists who are working on feeding and thinking about all those different care settings, and kind of what works appropriately. I'm kind of always thinking about that. I would say this, itÕs a work in progress, that second part of what can we do as clinicians to support our families in this.

In this line of research, in a span a couple of different studies. In this first study, what we wanted to do is we first start to think about the international classification of functioning. So, we have kind of our limitations or body impairments. That might be Ð I like to always give physical therapy examples, because to me, it translates really, really easily sometimes, which is so weird. I'm a speech pathologist, but like, I sometimes get tripped up trying to translate that to like speech and feeding things. I sometimes have to step out a little bit.

Those body impairments, it might be that you have like a messed-up knee, let's say an ACL, like torn ACL. So, then we think about activities, and then social participation. Then therefore, you can only walk a couple of feet, so then the social participation, so therefore you can't go to, I don't know. A new CrossFit gym just opened by, so I'll say, ÒYou can't go to CrossFit.Ó And that's where your social circle is. That torn ACL has impacted your ability to walk and exercise, and then you're struggling to go to CrossFit. 

What we wanted to do is recreate this for children with pediatric feeding disorders. We did this both through quantitative. We did surveys and EHR data polls, and then we also did qualitative interviews, and we really needed to use the interviews to get at this idea of how it impacted their activities and social participation.

So, for some of the data poll and the surveys that we did, first we wanted to characterize their impairments. What was kind of neat is we'd written this grant, and then the consensus definition came out. So, we made sure that Ð

[00:28:49] MD: The consensus. When she says the consensus definition, folks, that's when we got the definition for PFD. Okay, continue. Sorry.

[00:29:00] MS: No. Perfect. Thank you. So, we made sure that those impairments kind of aligned with those domains within the consensus definition. But then, for some of the surveying, what we also did is we looked at caregiver impact. How impacted our families by having a child with feeding disorder? We use this great tool, the Feeding and Swallowing Impact Survey. It was developed by Dr. Maureen Lefton-Greif and her team at Johns Hopkins. So, this was a great survey that we could use. Then, we also did a quality of life survey. So, the pediatric quality of life, which is really commonly used in research so that what was nice is that we had a lot of documentation in terms of other studies that have used pediatric quality of life.

One of the things we did with this is we compared it to other reported surveys and what we found, this to me just really, it just blows my mind. We found that children with pediatric feeding disorders, that their quality of life was impacted by children with brain malformations in liver transplants, and were worse than children with kidney transplants and acute liver failure. That Ð

[00:30:43] MD: Wait, wait, wait, wait. You're saying that the outcome of these studies, kids with their quality of life, their ability to enjoy, and go, and move, and be, was as bad as little ones that had kidney transplants and liver dysfunct Ð bless them. Bless them. Okay.

[00:31:05] MS: Yes. Isn't that impactful? I mean, we were like, ÒOh, this will be interesting to compare.Ó But like what we were finding in the, in the literature weÕre like, the findings really took us aback. Even when I say it, I have to pause. This is how our children are living, and is how our families are living with that level of impaired quality of life. So, that piece was really important for us to understand.

We also found, when I was talking about the caregiver impact survey, that caregivers were reporting high level of impact and stress. We didn't have anything in the literature to compare that to, but I'm seeing more and more people using that. So, I'm hoping over time, we'll be able to put a little bit more context to that. Then, what we found in our qualitative interviews, is that families were reporting that activities were affected, that their social participation. That they their children struggle to go to playdates and birthday parties, and eating at school. Then, we were also hearing that families talking about that other family members not believing them about their child struggling to eat.

Again, this was, if you remember earlier, I said, ÒDid we need to do this research? Do we actually need to quantify some of this?Ó It was these things because we hear that as clinicians, but why I think it was really important for us to do this research is we've documented. We've documented it. I see other groups starting to document it within specific populations that have PFD. And then it's going to help us start to think about how we impact treatment, and also on a larger level, in terms of policy and making sure there are these rights supports for these families.

What was interesting with these qualitative findings, we were like, ÒOkay, is this is really good and I love qualitative research. But the one drawback is that it's not generalizable.Ó So, you can go really, really in depth, but you can't generalize it to a population. Then, I had the wonderful opportunity to work with a master's student. I'll give a big shout out to June Okada.

[00:34:02] MD: Hi. Hi, June.

[00:34:06] MS: She wanted to see, ÒOkay, well, can  we make this work more generalizable?Ó So, we went to a national dataset, the National Survey of Children's Health, and they actually have a question around eating and swallowing, and if families are having difficulty with that. Then what we did is we looked at a lot of the same themes that we found in the qualitative. We wanted to see would this come up in a quantitative analysis. This was a national dataset that is representative, so we can actually, very few times, can you extrapolate. But we can cautiously extrapolate, and what we found is that parents who report their child were having difficulty with eating and swallowing. They didn't specifically use the diagnosis of pediatric feeding disorder. It wasn't there. So, we tended to use the word feeding difficulty just because that hadn't been in use yet.

But what we found is those families had a higher odds ratio. Essentially, a higher chance of having higher out-of-pocket costs for medical and healthcare than children without feeding difficulties. A parent was more likely to have left a job. They were more likely to have food insufficiency, and then they were more likely to receive special education and developmental services. This for us really echoed what we were finding in our qualitative study.

[00:35:50] MD: One, I just want to take a moment, when you're talking research, and you get into the nitty gritty, your face lights up like Christmas morning. It's legit. Your soul is like, ÒOh, my God. But then this happened and then this happened.Ó The enthusiasm is worthy of like, we got to acknowledge. It's amazing, and I love it.

But also, I have Ð okay, this is a technical question, because I don't do research. One day, I want to do it. I'm 40. I still have time to go back for a PhD, but like, we got a mortgage. And hell, since we moved, it's a bigger mortgage than what we had in South Carolina. Plus, and we bought the money pit. She's a wonderful home, but we found out they butchered hogs in the side yard and hung them in the basement. If that doesn't say I moved to the country from the city. I don't know what does, but it's okay. My daddy bless the house and he brought the good sage. So, we're going to be okay.

But the technical get me, because I don't do research. But when you're talking about going to these databases, how do you have access? How does an individual get access to these databases to be able to pull the information? That's like shrouded in mystery for me and I'm kind of envisioning, like, Thelma, was it Scooby Ð Velma from Scooby Doo like walking around with like her Ð so your sweet student, her name was Juna?

[00:37:22] MS: June.

[00:37:23] MD: June. I'm envisioning June dressed as Velma going somewhere to like pull information. So, I know that that is not the right analogy, but that's where my brain went. So, please, help.

[00:37:34] MS: Okay, well, I love that image.

[00:37:36] MD: Well, we were just Scooby Doo, because I'm 40. So, anyhow. 

[00:37:41] MS: First, it's never too late to go back to research. As I said, I did it when I'm 36. But it took me till then because of life, right? But what I also say, and hopefully we'll kind of circle back to this is that anyone can be involved with research. You don't have to get a PhD. There are so many options now. It might be in SLPD, so a doctorate in speech language pathology. It might be collaborating with a researcher. There's a whole host of options. But I loved your Ð then my second thought was about your house, and I'm so glad you saged it. I was like about to go put my sage stick in the mail to ship it to you. So, IÕm glad that's been taken care of.

[00:38:38] MD: Don't mess around in Dawson land.

[00:38:43] MS: So, getting access to databases, what an amazing question, because sometimes it can be really easy and sometimes it can be really complicated. But with that answer, I'm going to give you some examples, and then give a plug to all the clinicians out there of how they can help with this.

So, for this particular dataset, it's the National Survey of Children's Health, and that is readily available. You just have to ask for permission, and then they will send you the data and it's done. I think it's done every other year. It might be yearly. But it's done in conjunction with a couple of federal agencies. So, that's a really great place for researchers to go, to really start to get a pulse of what's happening. It really is a rich database. There are certain databases like that, that are readily available. Because as a beginning, when you're a beginning researcher, you have lots of ideas, but not a whole lot of money. So, I have examined and looked at a lot of these freely available databases. There are other ones that have great information. A lot of them don't have specific information about feeding or in the National Surveys of Children Health, it's called eating and swallowing difficulty. So, a lot of them I looked at, I really couldn't use because they weren't asking those types of questions, but they have other developmental questions. For other questions, they might be really appropriate.

There are one that are freely available, pretty easy to access. Then you have ones that are maybe within Ð held within or created to different agencies. Typically, you need to know someone in that agency and ask for permission, and they may or may not give you access to it. It might be for a fee. There might be restrictions on it. So, you have that.

The other place that has some rich data is Payor dataset. So, when Ð

[00:41:04] MD: What is that one? Like, pair? P-A-I-R, like a pair of things?

[00:41:11] MS: No, sorry. That totally is my accent. P-A-Y-O-R. So, insurance datasets, so you'll have that for Ð

[00:41:22] MD: Well, Payor. [inaudible 00:41:23]. Oh, my God. IÕm home. I tried really hard to hide. My family is from the valley. We're from the Blue Ridge Mountains and I tried to hide the Appalachian lang, but like now that I live here, it's coming back. Okay, continue.

[00:41:40] MS: I get that. I moved to Chicago Ð no, I went to school, pretty much lost my Boston accent. Told myself, first day of school, I couldn't use the word wicked. Went to Chicago, thought I'd lost it, and then I moved back home and it just has gotten stronger.

[00:41:58] MD: I love it.

[00:41:59] MS: So, I get that.

So, access to databases that insurance companies or Medicare. Those are sometimes a nice resource. Typically, with those, you have ICD codes or the diagnosis codes that we use to submit to insurance companies. That's kind of a nice way when you have a question about a specific population. The other is through electronic health records. If you're affiliated with a company or a hospital or a clinic that has an electronic health record, you're usually able to query that dataset to or that Ð I'm calling it dataset, or data warehouse to get information that you want.

So, a lot of my work right now, I'm using the electronic health records of Mass General Hospital in our larger organization is Mass General Brigham, which is one of the largest providers in the country. I'm really able to query quite a bit of locations and also patients. All sorts of different ways to access this. I am going to give a big pitch to clinicians of no one likes documentation. I still see patients clinically and I still have my moments of being like, ÒDo I really need to document this? Do I need to do this? It's fine. I thought I told the parents what to do, blah, blah, blah.Ó One of the things that motivates me, one, is because it's really good communication for the physician. It's putting everything I've told the family in writing. ItÕs also that it has implications for researchers, for healthcare administrators going in, and they start to understand maybe, who's the population? How is that service being used? If we didn't have clinicians willing to document appropriately, then we wouldn't have a lot of data that's really important for our research. I like to think that our research not only informs clinical practice, but it also informs policy. I see it on both sides, but it's really important.

[00:44:28] MD: Well, I can tell you, I know for a fact, I've had to have your babies. Not your babies, but I've had patients that have gone up to Boston for second opinions, because we couldn't get what needed to happen in South Carolina to occur. When they come back, the work that's being done up there is profound. And, wait, folks, shameless Feeding Matters plug, because God knows I plug them all the time.

But Feeding Matters has a scholarship so that if you are in need of a second opinion, or for that matter, a third, or a fourth, or maybe even a fifth, because we've been there, you can apply for the scholarship, well not necessarily you. But the caregiver can apply for the scholarship and it will help offset the cost of getting to a location. I have a dear friend who has been a recipient of that. They were able to get to Cincinnati Children's Hospital and in fact find out her little one had EOE and it was not just behaviors. She was like, ÒMichelleÓ, she was in Alabama, she was like, ÒThere's nothing here.Ó She was like, ÒThere's nothing here to help us figure out what's going on.Ó So, thank you for your clinical work as well, just saying. Clinical and research, because we, out here in the country appreciate it. Oh, my God, my roots are showing, literally. 

I want to come back to the research clinician dyad, because I feel like that needs its own designated time. Also, I will plug that in a minute. But focus, Michelle. What do we do with your research to carry it over to my Monday through Friday? We know these families are struggling, but what do I Ð how do I take that information? Because I know what I'm going to ask. When I personally engage in a caregiver coaching, a routine daily routines-based interview. Words are heart. That's what I was trained to administer by Dr. Frances Burn, who is the chair of Francis Marion University's grad program. And she taught me everything I know about a routine-based interview, and I would love Ð I want to see an RBI created specifically for PFD. I would love to talk to you about that afterwards, because I think that would be a game changer for the world of early intervention. Let's put that joy and hope and prayer into the universe.

But that's what I do, is I customize my RBI to seek to understand where their point of system failures are, but that's me winging it. I don't necessarily always like flying by the seat of my pants. So, help me do better.

[00:47:26] MS: Oh, I love that question, Michelle, and I'm excited Ð yes, I'm excited. I have so many thoughts about this. First, I need to address Feeding Matters. I just love and I love that they are so family focused, and they really understand that it really all comes down to the family and the child, and to everything they do. That's why it's been like, my privilege to been able to volunteer with them. But what do we do? How do we take my research and translate this over? I'm going to like kind of second this idea that I think there were a lot of people who are doing this work, and they kind of pieced it together in terms of what they've learned and how they've been taught or what they've learned as they've been treating children in families. And wouldn't it be so nice to have a more systematic and standardized way to think about this, and to integrate this into our clinical evaluations? WouldnÕt that be awesome?

[00:48:35] MD: Yes, but also it takes in different cultures, because I don't just treat white, Anglo-Saxon children. The babies I work with in their families, they don't look like me, and that's what makes America beautiful is that we are this tapestry. But I want that piece in there too. I want a lot, no pressure.

[00:49:00] MS: But it has to be. Because for us to truly deliver family-centered care, we have to not just account for the Ð kind of look looking and thinking about the family's unmet social needs, but we need to account for in work in all of these cultural considerations. Family-centered care is not family-centered care without doing that piece of it. And I haven't even Ð well, a little bit here and there. I've kind of touched upon some of my family-centered care work. So, kind of what I go back to when I think about what do we need to do.

In 2019, the National Academy of Medicine, it put out a report that talked about this, and it's called the five As. First is awareness, and this is like identifying what those unmet social needs are, or social risk factors which I use interchangeably. Technically, they're slightly different, but I use them interchangeably. So, awareness, and then adjustment, in how can we give recommendations and treatment plans tailored to the needs of our families, versus just kind of these rote recommendations. Assistance, so how can we provide the care that they need. For people who are working in a hospital or even, I think, about it in early intervention, I used to do this. I would then refer on to a community health worker. I refer to the social worker who, for that family, who's heating their house with their oven, they then put in a referral for fuel assistance, to help that family be able to heat their house through, I would say, oil or gas, or however, that house was being heated.

Then, alignment. So, this starts to go a little bit beyond kind of maybe what we can do in our day-to-day as a clinician, but we all can be really wonderful advocates and proponents of policy. What systems need to change? How do we start to link our healthcare to community, and then finally, that advocacy work of really starting to change policies to work? So, I'm going to focus a little bit more on that awareness and adjustment. The awareness, exactly what you said, that we need to be asking these questions, in lieu of having a standardized way or intake to get at this. I encourage people to ask relevant questions in terms of parentÕs stress levels, their impact, their childÕs feeding disorder is having on their family system, and then being able to participate. I would ask questions around unmet social needs.

Right now, as we all know, because I've been talking about my Boston accent, I live in Massachusetts. We just had a state-wide report come out in that over 50% of children have food insecurity in Massachusetts, and I somehow think that that's fairly representative across the entire country. I mean, we're talking about feeding therapy. We need to make sure that families have access to food. Really incorporating those types of questions.

[00:52:46] MD: I have the perfect example for that. As a clinician, I always ask the families on our first appointment, when I was scheduling my eval for home health. I would say, ÒOkay, and I just need you to have the preferred foods there that we'll be working with so that I can do the eval. But I want to see the natural state. I want to see what's going on.Ó And you know, I change my specific word selection, give or take, the way the flow of the conversation, right? I had one mom tell me one time and she goes, ÒWell, I don't have no food. The other girl, she brought the food.Ó And I said, ÒWell, do you have any leftovers from dinner the night before?Ó And she goes, ÒNo, we just drive-thru theÓ Ð she called it McDÕs, I think is how she phrased it. ÒAnd we did bring it home and we eat it. But there's no leftovers.Ó

So, by the end of the initial eval, just schedule the initial eval. I found out that this child ate lunch at school and breakfast at school, and they may or may not have dinner. If we don't even have the bare basics to do with the eval, this is why we have to ask these questions, y'all, even to schedule the eval. Okay, continue. Sorry. But that was mind-blowing. That was my open oven moment.

[00:54:03] MS: Yes. And I think, what that family was telling you is probably more common than we've realized. And that I think we would be surprised to know how many families are food insecure. Once we learn that, we need to recognize that we then need to Ð if we're not going to put in a referral, help that family sign up for a food assistance program, then we need to make sure we're connecting with them with someone who can help them or identify. It's probably a multi-prong approach of food assistance, plus food pantry, plus other options too. We've got to be doing that.

[00:54:51] MD: Yes. Okay. I interrupted your thoughts. I'm sorry. I just felt very strongly on that. Yes, continue.

[00:54:57] MS: No, I love that. Honestly, it's stories like that, that I think help us understand, one, the importance and helps us remember too, right? It's really easy for me to say, ÒYou should be screening for a family's stress level, and a family's, their social context, and social risks and whatnot.Ó But to give it a story like that, I think makes it way more meaningful. So, I think we need to ask questions in a non-judgy way, especially when the families who were working with maybe don't look like us, or don't come from similar backgrounds as us. So, I think thatÕs really important.

[00:55:50] MD: Yes. Seek to understand mentality. That's what my daddy would say.

[00:55:53] MS: I love that. Then, once we find out this information, we need to do something with it. It's not good enough to just ask. We need to respond. So as appropriate, we refer, and that's going to look different depending on where you work. Like I said, in early intervention, we were really fortunate. In my program, we had a social Ð we had like, amazing social workers, where if I asked and found something out, I talked to the social worker, and we kind of developed a plan, and they would loop back with the family. In our hospital system, we have community health workers, or patient navigators who we can kind of refer and have them help with a family.

I also worked in a private practice, right? So, I wasn't affiliated with a larger hospital. It was really important for me to have that network of who I could refer to when appropriate, and building relationships with pediatricians, so I could pick up the phone and be like, ÒHey, someone just came in. I'm really concerned about X, Y, and Z.Ó I get it's harder to do everything we're talking about when you're in a more Ñ not isolated Ñ but when you're not affiliated with a larger practice, but you still have to do this, and you have to get creative and there are ways to do it.

[00:57:17] MD: I learned from some of your colleagues at ASHA last year, it was a panel discussion. I think there was four colleagues from MGH, and they talked about a website called findhelp.org. I had never heard of this. Oh, my God. I felt like I'd been living under a freaking rock. But findhelp.org, people, you put in your zip code, and you can find help for things you didn't even know that you needed help before. And then afterwards, you're like, ÒWell, dang. But it is like from food banks, to power support, like helping to get electricity paid for, or like transportation, that helps with transporting individuals that like need adaptive equipment. It was Ð yes. Okay. But I didn't know about that. But I learned about it, because I listened to your colleagues.

[00:58:09] MS: I love it. So, once we find out, then we need to do something. Like I said, refer on. But there are things that we can do too, right? Listening to what the family circumstances are, their preferences, what's meaningful for them, and then tailoring that treatment plan for them. For instance, if there's a particular food, maybe it has the right texture or flavor that you want to work on, and you make that recommendation to that family, but maybe that's a food that's not covered by food assistance programs, by WIC or SAP. Well, think about a food that maybe would be covered. Or if you're making a recommendation to go buy something at a certain store and that store doesn't take food assistance, help that family think about where they could go buy that food.

So, really starting to tailor. I'm talking specifically around, when families have unmet social needs, but we could bring this to what we were talking about earlier, about the impacts of families, that if a family is saying that they are struggling bringing their child Ð actually, this is a real-life example I had. I had a family who said, ÒOh, he's doing so well blah, blah, blah. But we just can't go to McDonald's.Ó I think they went to McDonald's after like soccer or something like that, like all the kids went. But this child just had never had any of the food there and never blah, blah, blah. So, I was like, ÒGreat.Ó We went to McDonald's and kind of worked through everything, so that they felt like they could participate. We figured out foods that were going to be appropriate for their chewing skills, blah, blah, blah. 

Like I said, talking about unmet social needs, but it really applies to everything, that we really need to be tailoring this to our families. So, I think those are some of the ways that our research starts to really make impact on clinical practice. There's still ways to go and where I'm hoping my research goes, is really thinking about how we can start to, in a more standardized way, evaluate for some of these things, in terms of caregiver impact, quality of life, unmet social needs. Then, once we have that, then to start thinking about how can we start building treatment programs that really incorporate all of this?

So, if you have thoughts, if anyone listening has thought, email me. I'd love to talk because this is something that I'm actively thinking about. I don't know if I have the answers yet, though.

[01:01:02] MD: Yes. Well, one thing that I have struggled personally with is, when can I, as a clinician, make the recommendation that the caregiver get counseling. I go back to one day when I'd first come back to work after Goose was born. We're talking nine and a half, 10 years ago, it's been a minute, right? Because he's 10. But one of the interpreters that I worked with at a family's house, we were just out of nowhere, stopped me in the middle of my sentence, and she put her hand on my knee, and she goes, ÒHow was your postpartum?Ó I was like, ÒMy what?Ó She goes, ÒHow was your depression? How were your baby blues? How was your anxiety?Ó Out of nowhere, I burst into tears. It just like hit me. Like, ÒWhat just happened?Ó

But that put me in the, ÒHey, my headspace isn't as good as I thought that it was and I'm here trying to do therapy.Ó But when we're trying to talk to our families, if their headspace isn't as good as we think it is, and I have sat with a mother, whose baby was on hospice, and I was in helping set up a quality of life, and the momÕs depression was so bad, that it wasn't safe for me to leave her with the child. I had to scrub my afternoon and sit with her until her husband could get home and I spoke with the pediatrician on the phone and ensured the baby was safe. I made all the necessary calls. But that piece right there, we have to Ð selfish research request. I would love to get more information on when do we say in our plan of care, SLP recommends caregiver referral for counseling due to signs and symptoms of whatever. That just Ð

[01:02:53] MS: Yes. It's something that for so many of our families, they're experiencing. That they have had probably traumatic births, and then their child has medical complications, isn't feeling well. So, of course, it should come to us as no surprise that they're probably going to be struggling. I think, making this part of the conversation, and making it part of the conversation is so important. In the other piece, that so many of these families are feeling so isolated. That no one truly is understanding what they're going through, and so we are people who can understand that. It's important. We need to bring it to the forefront, to talk about it.

It was one of the reasons this year for the Feeding Matters conference. We were thinking about what are interesting invited sessions? What are interesting keynote speakers to have? We really heard the community talking about mental health and trauma-based informed care and that's why we ended up really having kind of this nice focus on that, this nice line throughout the conference on that, because we just felt like he needed to bring more awareness to that.

[01:04:23] MD: Okay, so folks, if you're listening, two favorite resources to support the caregivers. One, Feeding Matters has The Power of Two program where one caregiver who's gone through training, will mentor and support another caregiver for free. Meg, I will be the first to tell you, you may go in there with an amazing future tool that she developed to help ask the questions, to coach the caregivers. But they're still not going to tell you, because they can't put it into words because you're not a caregiver going through it. But they're going to talk to the other caregiver about it. As such, they should, and we should respect it.

Then, two, National Foundation of Swallowing Disorders, one Thursday every month. I think it's third Thursday, but don't hold me to that. They have a, for free, virtual caregiver support group that meets, and it's a bunch of other caregivers that get together on Zoom, and they support each other. Various clinicians from across the country tie their time to help, like, support the flow of the conversation and give guidance without giving recommendations, which is a very fine line to walk, but they do it. So, I love those supports.

Okay, we went over, but can I ask one more question?

[01:05:40] MS: Of course.

[01:05:41] MD: Okay. I say that as I'm like, ÒI have another podcast to go record.Ó But I want to know, if we're a clinician, and I'm in the trenches, and I'm there Monday through Friday, how can I partner with the researcher? How can I bring my skills to the table and help put evidence in the world? Help?

[01:06:01] MS: Absolutely. So, I would first say, if you have seen research that interests you, reach out to that person and let them know that you're interested. They might not right then in there have a project, but there might be one that is coming down the line, and then you're going to be at their forefront of, ÒHey, this is a person who would be willing to partner with us.Ó So, I would say, reach out over email. If you're at conferences, go up and talk to them. I think that's going to be really important.

With that, though, I don't want to put all the onus on clinicians, that this is a two-way street, and that researchers need to involve clinicians. As researchers, I know, I'm always actively looking for clinician and family partners, because that enriches my research. Unfortunately, not all researchers think that way. For many, many, many years, researchers sat in an ivory tower and was like, ÒWe did this and you all should listen to us.Ó Now, I like to think that that is changing in that we see that it really is a Ð it's bidirectional, or more like a feedback loop that research informs clinical practice, which clinical practice informs research, and clinicians have amazing ideas and really important research questions to ask.

So, sometimes through different, whether it might be within a hospital or different state associations, sometimes thereÕs like a research group or collaboration. Check those resources as well. But I would have to say my number one thing is, which is really hard, and it's like even more hard after a pandemic. I guess it's really hard. It's hard because we're women. WeÕre predominantly women, and it's even harder after a pandemic is like, putting yourself out there and that lurking, that's going to be the best way to do it. Because I think all great things come from social connection, and you just have to figure out that first step to making that connection.

[01:08:20] MD: Wait, the Feeding Matters app. Okay, this episode was not supposed to be all about Feeding Matters, but we love them. So, there you go, ladies. But they have an app. I know, I post, like people email me all the time and they'll say, ÒHey, Michelle, I'm doing this research project. Can you share it somewhere?Ó I just shared one for Dr. Louisa and she was doing NICU research. But I've shared stuff for like Kristin in the past. But there's different groups that you can join. There's like the family caregiver group, there's the clinician group, there's a research group, and then, forgive me, I don't remember the fourth group. But they set it up so it's four domains kind of like PFD which I sold the numerology thing in there. I thought that was cute. But anyhow, you can pop in there and volunteer your time there. That's a thought, yay.

[01:09:09] MS: That was brilliant, the app. Because that is in a place where actively people are posting.

[01:09:16] MD: Yes. Let's make it. There it is. We're putting Ð weÕre claiming this for 2023. I mean, it may be halfway over, but like we can still claim things. See, Erin, I'm learning to manifest. You've trained me well.

Okay, so then, I always, one, thank you for coming on. Please come back. We barely scratched the surface. We need like a few more hours. So, please come back.

[01:09:41] MS: Well, thank you for coming and anytime, I would be happy to come back.

[01:09:46] MD: Thank you. Then, two, at the end of every episode, I always ask people if they have any love money lying around. If they've got a little extra that they could donate to. Do you have a scholarship, a grant, or an organization, or an entity that you'd like them to donate that money to?

[01:10:04] MS: Oh, hands down, don't even have to think about it, Feeding Matters.

[01:10:10] MD: I was waiting for you to throw some obscure scholarship in there, but thatÕs great.

[01:10:20] MS: I could sing their praises. But I feel like we did plenty of that during this conversation.

[01:10:27] MD: Oh, well, thank you. Seriously. Thank you for making us better and driving us forward. I am grateful for you and all the supports and all of the individuals that have supported you, that we can learn. So, thank you.

All right, everybody. If you're listening, be sure to tune in on First Bite podcast on Instagram. Take a peek at our research Wednesdays that Erin and I rolled out because we wanted another way to be a bridge to expedite research to practice. I do believe you will see Meg on there and her fabulousness. This is amazing. Hopefully, we haven't screwed it up, and we have learned how to save the recording and post that afterwards. If we did screw up, trust me, it was me and not Erin. So, there's that.

Okay, everybody. Thank you. Thank you. And don't forget, come join us at ASHA for the PFD track because I know for a fact that representing with the invited talk with Rachel Arkenberg, correct?

[01:11:25] MS: With Jean Marshall.

[01:11:28] MD: Oh, I love Jean. Okay. All right. So, come join us there

[END OF INTERVIEW]

[01:11:33] MD: Feeding Matters, guide system wide changes by uniting caregivers, professionals and community partners under the Pediatric Feeding Disorder Alliance. So, what is this Alliance? The Alliance is an open access collaborative community focused on achieving strategic goals within three focus areas, education, advocacy and research. So, who is the Alliance? It's you. The Alliance is open to any person passionate about improving care for children with a pediatric feeding disorder.

To date, 187 professionals, caregivers and partners have joined the Alliance. You can join today by visiting the Feeding Matters website at www.feedingmatters.org. Click on PFD Alliance tab and sign up today. Change is possible when we work together.

[OUTRO]

[01:12:26] MD: That's a wrap folks. Once again, thank you for listening to First Bite: Fed, Fun and Functional. I'm your humble, but yet sassy host, Michelle Dawson, the All Things Peds SLP.

This podcast is part of a course offered for continuing education through SpeechTherapyPD.com. Please check out the website if you'd like to learn more about CEU opportunities for this episode, as well as the ones that are archived. As always, remember, feed your mind, feed your soul, be kind and feed those babies.

[END]



FBP 250		Transcript

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