First Bite Ep 280
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Michelle Dawson: [00:00:00] Hi folks, and welcome to First Byte, fed, fun, and functional, a speech therapy podcast sponsored by Speech Therapy. I am your host on this NerdVenture, Michelle Dawson, MSCCC 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 Cullatown, South Carolina.

And a guest lecturer nationwide on best practices for early intervention for the Medically Complex Project. First Bite's mission is short and sweet, to bring light, hope, knowledge, and joy to the pediatric clinician, parent, or [00:01:00] advocate by way of a nerdy conversation. So there's plenty of laughter, too. In this podcast, we cover everything from AAC to breastfeeding, ethics on how to run a private practice.

Pediatric dysphagia to clinical supervision 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. To break down the communication barriers so that we can access the knowledge of their fields.

Or, as a close friend says, to build the bridge. 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. 

Erin Forward: Every fourth episode, I join in. I'm Erin Forworth, MSP, CCC SLP. The Yankee Byway of Rochester, New York transplant, who actually inspired this journey.

I bring a different perspective, that of a new ish clinician, with [00:02:00] experience in early intervention, pediatric acute care, and 

non profit pediatric outpatient settings. So sit back, relax, and watch out for all our stories. 

Michelle Dawson: Hey,

this is Michelle Dawson and I need to update my disclosure statements. So 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, SCESHA. A current board of trustees member with the Communication Disorders Foundation of Virginia. And I am a current member of ASHA, ASHA SIG 13, SCISHA, [00:03:00] the Speech Language Hearing Association of Virginia, SHAHB, a member of the National Black Speech Language Hearing Association in Basel, and Dysphagia Research Society, DRSA.

My financial disclosures include receiving compensation for First Byte 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. And I currently receive a stipend. Salary from the University of South Carolina in my work as adjunct professor and student services coordinator.

And I received 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. [00:04:00] com. So, those are my current disclosure statements. 

Erin Forward: Hi, this is Erin Forward and these are my disclosure statements.

I receive a salary from Cincinnati Children's Hospital Medical Center. I receive royalties from Speech Therapy PD for my work with First By Podcast and other presentations. I also receive payment for sales from the First By Boutique. Which I have with Michelle Dawson for non financial disclosures. I am a member of ASHA and a member of Special Interest Group 13.

I also am a volunteer for Feeding Matters. I am a contributor for the book Chasing the Sol of Michelle Dawson, which I received no financial gain. I also am a member of the South Carolina Coalition Committee with ICDL DIF for a time. 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.

Right, everybody. We are back with two of the most [00:05:00] amazing pediatric dysphagia, pediatric feeding disorder, SLPs in literally the entire globe because today's episode is brought to you from Australia and Alabama, and then we're coming in hot with Virginia and bringing in Ohio. And this was a probably an act of God to pull this off because about 40 minutes before we went to record last time Goose Danger Dawson in his infinite, talented self sprained his ankle, pulling his own sock off and managed to punch himself in the face.

So this has been like 

Memorie Gosa: There's a tornado before that. 

Michelle Dawson: There was a tornado before that. Oh, we had another tornado touchdown about a mile and a half. And then last week in the foothills of the mountains, they shut down the main road in and out because of a mountain fire. So, This has literally been quite the move to Virginia all of the natural disaster happens. [00:06:00] Although, my husband assured me when we moved here, this was supposed to be the safer place given global warming in the next 50 years. I think it's just gonna be trial by fire literally until we get there. But yeah, so hi patient and kind and gracious.

And I, I think we'll just go alphabetically because I feel like that's the best way to do this. There's me, there's Erin, and then we have Memorie. So Memorie, can you please introduce yourself and where you're at and all the good details? 

Memorie Gosa: Absolutely. I'm Memorie Gosa. I'm the chair of the Department of Communicative Disorders at the University of Alabama, and I teach pediatric dysphagia and voice and voice disorders and other Courses as needed here.

I've been in pediatric dysphagia and feeding clinically and doing research for the last 20 years and most recently have been working with Jeanne there [00:07:00] in Australia on how do we assess PFD. It's such a broad term to be so inclusive but trying to understand how to operationalize the definition such that we can identify kids in our outpatient clinics.

Michelle Dawson: Yes, and, and folks the reason we have a pediatric feeding disorder and a pediatric dysphagia track at ASHA is because of Memorie. She was the original chair of that Track for the first two years. So, thank you. Thank you. Thank you for laying a awesome foundation for all of us to be able to have a place to grow and propel our field. So that is much appreciated. And then we have Jeanne who it is bright and sunshiny early there in the morning while it's shutting down time for all of us. So Jeanne, thank you for waking up early and being with us. 

Jeanne Marshall: [00:08:00] That's okay. It's, it's nearly 8 AM here, so it's not too bad.

Not too bad. So you just want me to tell you a bit about myself? 

Michelle Dawson: Yes, please. 

Jeanne Marshall: Great. So yes, my name is Jeanne Marshall and I'm located in Brisbane, Australia which is kind of about halfway down the East coast of Australia. I have also been a clinician for a long time, 20 years as well. And have had this passion for pediatric feeding for a really long time.

I've worked across a range of different settings. in schools, in private practice and then in a tertiary hospital as well. And then more recently have transitioned into this wonderful, it's called a conjoint research fellow position. So my position is half funded by, our local tertiary hospital, tertiary children's hospital and our university.

So, I work across both of those settings and really have been trying to forge my research [00:09:00] program in pediatric feeding across those two settings, kind of really doing research that's very relevant right at the, the coalface. So, It's been wonderful, and it's been wonderful to work with Memorie through that process, too.

Michelle Dawson: Thank y'all. And, you've been talking about teletherapy, because I remember we talked about that previously, and y'all just got to say the States have a long way to go to play catch up to the groundbreaking work that Australia has done on just improving access of care. What the research that's coming out of there is just profound.

So is there, is there a journal or favorite resource you would recommend folks follow up with? 

Jeanne Marshall: around teletherapy. Not specifically. I mean, we've published a lot in Dysphagia, Journal of Dysphagia Journal of, I'm not going to say it right, Telemedicine and Telecare, I think. [00:10:00] Oh, I don't know. I know, Professor Liz Ward here, who's a wonderful friend of mine and of memories, has done a huge amount of work in this space, particularly in adult dysphagia care.

So, she was probably the mother of telepractice in Australia and from her, a lot of work has evolved. So she actually Co supervised Madeline Ratz with me a few years ago, who's done the paediatric dysphagia work in this area, so yeah I would look up anything that, that Prof Liz Ward has written as a great guide in that area.

Michelle Dawson: Yes. And we, we had Madeline on several, several years ago. She was utterly delightful. Yes. 

Jeanne Marshall: Yeah. Yeah. She is delightful. She's got a little baby now. . 

Michelle Dawson: Is she really? Mm-Hmm. That's a boy or a girl? 

Jeanne Marshall: Little girl. 

Michelle Dawson: We had a [00:11:00] SHAV last week. And one of the colleagues brought their baby and she had the biggest bows and she was five months old and sitting up and I was like, I know you don't know me, but can I please smell your child?

She looked like I was crazy, but then she let me smell her. So I was like, okay, good. I can move on about my business. But like, ah, she smelled like lavender. That's the best thing in the world. But yes. And then Erin, hello, Erin. How is Cincy? 

Erin Forward: Oh, it's good. It's sunny. I'll take it. It's not snowing. So what more could you ask for?

Michelle Dawson: Nice. We have the boys decorated the trees with the Easter eggs. And I caught Goose putting the Easter egg on a string on a stick and slingshotting it into the tree. So today when we get home, we had seven eggs to pick up off of the ground to attempt to Shoot into the trees. So yay for sunshine and outdoors.

Well, okay. We have a [00:12:00] lot of ground to cover. But I don't, and I'll, we we've got our questions, but today's topic is all about PROM. So, we're not talking about the kind that we get dolled up for and go on the dates, but the other kinds. So, could someone explain what is PROM? 

Memorie Gosa: Yeah. And, you know, we just talked about. How we this particular episode kept getting pushed back and pushed back, but now it has landed squarely in PROM season. So maybe it was just meant to be. We've enjoyed seeing everybody dolled up here in Tuscaloosa the last several weekends as the high schools have done prom. But PROMs, as they relate to pediatric feeding and swallowing disorder, are parent reported outcome measures or patient reported outcome measures. So their specific tools that we can use that gather the patient or the parent's perspective about whatever the topic is. How would you add to that, Jeanne? 

Jeanne Marshall: Yeah, I think that [00:13:00] that's a perfect description actually. They can be something that is collected during the course of an illness or, or condition.

They give us information that the clinical assessment really is just not going to give us. So information about how the condition is affecting quality of life for that family. Well, you know, What are the things that you would normally ask in an informal interview with the family? It's usually put into a PROMIS questionnaire.

Michelle Dawson: So, something akin to like a SWAL call with our adult patients? Mm hmm. 

Jeanne Marshall: Yeah, yeah, absolutely. 

Michelle Dawson: And how are y'all using a PROM within the space of of peds? Like when I, cause I'll be honest, I've struggled trying to find something that takes into account that psychosocial domain for pediatric feeding disorder. Cause Sometimes the tiny human is too tiny, I feel like, to gather that, [00:14:00] what is that quality of life impact, and the caregivers are the ones that are falling apart because they're so stressed. 

Memorie Gosa: Yeah, well, and in pediatric populations, specifically in infant populations, you know, feeding is in diets, and so it includes the mother or whoever the primary caregiver is.

Often it is the mom that's doing the majority of the feedings. So it's, it's not just that the infant is too little to tell us, it's that it does involve this other human and their experiences around feeding and those have an impact on feeding the mom's feelings and stress and anxiety that can come with having a child who is a difficult feeder or who has difficulties around feeding can certainly impact her feelings around feeding there. So I think it's important to consider that perspective, especially in our, in our infants. Jeannene and I just came to this topic through organic [00:15:00] conversation around what are you doing in your clinic? So we're on opposite sides of the world but we are treating the same pediatric feeding disorder in, in both places.

And so the, the conversation just in a general sense was, tell me about your. protocol, like what all are you using now in your space to gather this information that's going to touch across these four domains so that we're not just limiting what we see in a speech pathology clinic to feeding skill.

If we're truly trying to diagnose and understand pediatric feeding disorder across all four domains, what are you using to do that? Because Jeanne mentioned when she was talking a minute ago about how breastfeeding, A lot of this information can sometimes be gathered in an informal kind of interview process, sometimes when we're talking to families and, and young clients, we get some of this information through just a conversation, but for us to gather it in a systematic way, in a way that's reportable and [00:16:00] measurable across time points we need measures like PROMS to help us do that.

And we need questions sets that have been vetted and have been shown to be valid and reliable for measuring the information that they tell us that they're measuring. Jeanne, what would you add to that? 

Jeanne Marshall: You are just covering it so well. Memorie. Yeah, I mean, I guess, Yes, as Memorie said, this did come from just organic conversation about operationalizing the PFD diagnosis.

So how, what do we use? What should we be using to try and measure these types of things at the beginning of a journey with the family of a child with PFD? And then also what can we use to measure the impact of any treatment that we're providing to them as well? I know. There are just so many different questionnaires and things available in the literature.

[00:17:00] And what has been found when people have done surveys and that sort of thing, is that lots of people are just making them up as well. So we wanted to, through this work that we've been doing, try and figure out which are the best PROMs that we should be using to try and capture this information. Are there PROMs out there that, as Memorie was saying, are the strongest ones from, you know, being valid?

Do they actually assess what they're supposed to assess? Are they reliable when you use them over and over again? Are they capturing the same thing? And then are they responsive to change? So when you use them over different time points with the child, are they showing us that things are improving or not improving, etc.

So, Yes. That's kind of what evolved from our conversations is this big review that we did to capture all of the information about the different PROMs. We did do that specific to feeding [00:18:00] skills in the end Memorie because the whole area of PFD is so broad that yeah, we would have ended up spending about 10 years trying to categorize all of those different PROMs.

Michelle Dawson: I'm just. I like the origin stories because I feel like the origin story of like Meg and I were having a quick conversation today on the phone when I called to tell her I screwed up the dates for the due dates for the PFD invited talks. She goes, Hey, I have an idea. And I was like, Oh, what about this?

And it was just like this rapid fire spit ball while I'm speeding down the highway, going slightly above the speed limit in a safe manner down the highway. But like the, the origin stories just. That's what, that hunger for knowledge and to make the world a better place. It's how do we then act on it? 

Memorie Gosa: Yeah. Well, and also a desire [00:19:00] to provide, you know, quality care. We, the, the working group that provided the PFD definition and framework, I mean, that was several years in the making, right? So, it was three years. It was thoughtful. It was deliberate in considering all the ways in which we've missed families and, and kids that needed help in the past because we just so singularly focused on one area or another, depending on our discipline specific lens that we approach. you know, problems and, and challenges with. 

So I appreciated the work that went into the definition there and then having that in the clinic was great, but then it was like, what do I do with this? How do I, how am I gonna use this in a way so that it can be beneficial? And there are, to Jeanne's point, So many, like, if you do a lit search, just a quick, in PubMed, you know, tell me things that can help measure feeding skills, well, you get, [00:20:00] Thousands of papers that come out.

So the challenge for clinicians is how do you weed through that? And Jeannene and I are both clinicians. So in addition to doing research, we still see kids and infants and on a regular basis trying to help families that, that experience pediatric feeding disorder. So I think it, it, the origin of it grew from just a, a very real place of, well, what do I do in my practice to, to meet the challenge that, is introduced with, with new diagnosis codes and those kinds of things.

Michelle Dawson: I'll be honest at the universities that I've worked at previously, one of them would not touch PFD in the university clinic because of concerns of fear of liability. 

One of them did, but we did not have I want to say FIM scores. That's what it equates to in my mind, the functional. We did not, um, put those in place.

And part of that was time [00:21:00] constraints. I was a clinic of one and we're going through our initial accreditation. It was, I fall back on the implementation science piece. If we set up this aspect of it and we're in the process of process improving. And that's, that's where that. Implementation science may be a subset of the world of speech pathology, but it touches on every single area of practice, but through the way of assessing what it is that you're doing towards process improvement.

So folks, if you do not use a PROM in this moment, that's okay. You can give yourself grace and then take this as a meaningful opportunity to say, Okay, well, what can we do? How can we do and what can we implement? Because that's the fear of the not knowing that you're missing something.

Memorie Gosa: Sorry. Well, and I think too there are so many different PROMs [00:22:00] available of varying quality, but that they're also measuring different aspects. Jeanne mentioned that we'd just be narrowed in on what are the problems that we can use to help measure feeding skill to help us understand the parent or the client patient's perspective of their feeding skill.

Well then when we start talking about that, you've got chewing, but you've also got the swallowing piece that goes with that swallowing might include some aspiration risk, but there are measures that just solely focus on aspiration, too. So even within feeding skill, there are lots of different areas that these specific PROMs are trying to provide additional information . 

Michelle Dawson: Is there a particular PROMs that y'all find that you use in your practices that bring you joy? And good evidence, 

Memorie Gosa: so we started conversations around what, like we told you what are you using in your clinic currently? And a lot of the different measures that we use here were patient [00:23:00] parent reported outcome measures.

So, when that is the, or some that are in our protocols include the sensory profile that's a parent reported outcome measure. The Behavioral Pediatric Feeding Assessment Scale, the BPFAS. That's one that we use here on a regular basis. That's also a parent reported tool. The PDE10 is a parent reported tool.

Jeanne, I'm going to stop. So you have something. 

Jeanne Marshall: Yeah. Yeah. Oh, I mean, there's so many, a lot of the ones that are on that have been developed by Britt Paytas and Suzanne Thoyer. Hayley Estrom, those tools are all parent reported tools as well, PROMs. So, and a lot of those have very good psychometric data and are freely available.

So, a lot of those are the ones that we usually end up recommending and using quite heavily as part of clinic. 

Memorie Gosa: And those, in addition to being valid and reliable and all the things that they're supposed to be, they [00:24:00] do provide terrific information. So, I don't know if that brings me joy in the same way that other things do, but in a clinical assessment setting, they do provide terrific information.

Erin Forward: Yeah, and I think the. The importance too of, there's so many, so much value to that parent report, patient report, both from a, you're getting information of what's happening when you're not there. I mean, the amount of times that I have a family come in and be like, especially for an evaluation, like they usually do this at home and they do the complete opposite because it's a completely new environment.

And that's not what they're used to, whether it be, they do more than the caregiver is going to say or not, but then it also provides opportunity to measure What's the caregiver's understanding? What's their cultural expectations? What is meal time like? It starts to open up that door of better understanding between the clinician and the family of what are you expecting?

What is your understanding of this measure? What are [00:25:00] you seeing at home? Which I think is important. in the long run provides better therapy for everyone because there's more checkpoints for where those breakdowns might happen, where if you're just looking at your perspective with the child, you may be, there may be all these breakdowns that you have no idea are happening because you're never touching base with that caregiver's understanding.

Jeanne Marshall: And it's not to say that the clinician's perspective is not important, but it's the combination of those things that really makes a comprehensive assessment. Totally agree. And as you say, Erin, that PROM can really just open the door to lots of conversations as well, can't it? 

Memorie Gosa: One of the features of the behavioral pediatric feeding assessment scale that I really appreciate is it gives a statement. It'll say like, my child eats fruits, and you might say one to five, they do it all the time, or they never do it, right? And so you rate that. But then there's a follow up question for each of those statements. And the follow up question [00:26:00] says, is this a problem for you? Yes or no? Because many things that have been reported to me that I think, yikes, that We're going to work on that.

Parents will report back, it's not an issue, like that eats fruit statement. Well, I, sometimes the mom might say, well, I'm fructose intolerant, and so we don't really have fruit at the house, and so that's not a big deal in our family. So those kinds of insights, to Erin and Jeanne's point, is really helpful, especially around goal planning and goal setting.

We want to do things that are culturally relevant and important for the family, right? How families say this was successful or not is when it improves quality of life for them and, and their family and meal times for them specifically. So I think these types of tools give us that insight that other tools would miss because we wouldn't ask those same kinds of questions.

Michelle Dawson: I like having a tool [00:27:00] also from the clinical supervisor perspective. Every single one of us on here mentors the next generation. And how, and trying to teach a student on how to ask a question of a caregiver when they themselves are not. are typically not parents. How do you hold those conversations and elicit that information can be really, really challenging.

But if there's a tool that kind of guides you in my head coming from the world of EI, it reminds me of like the family guided routines based intervention and the tools that are coming out of, out of that space. Like that, it's just awesome to watch their eyes light up when they were like, Oh, I get it now. And they start piecing it together. 

Memorie Gosa: Yeah. And I think it also teaches some really critical interviewing skills. Recognizing that sometimes you're going to be in situations in the home is a great way. a great example doing early intervention therapy where you may not have the [00:28:00] tool in front of you, but you've trained around the types of questions.

And then that leads you to those follow up questions. I think that are important. So using these types of tools for their intended purpose, yes, but then also I think it helps to, to train the types of questions that you want to ask families as you're considering what's important to them around mealtimes.

Michelle Dawson: So I feel like the follow up question is, should I use a pram in my clinical experience? And Dawg is very enthusiastically shaking yes, now that the her arch nemesis has finished to leave her home.

Jeanne Marshall: Yes, I think we would encourage that yes, as part of your clinical assessment. We would advise you to use PROM wherever possible. And we would advise you to use a PROM that's considered to be of better quality. So valid, reliable tool that's gone through proper psychometric testing. Yes, which probably, yeah, [00:29:00] go.

Michelle Dawson: Are you allowed to recommend some, or is that a conflict of interest, or should I just pretend I did not ask that question? 

Memorie Gosa: We can absolutely talk through some of the ones that scored highly on the assessment, but I think it would be important to talk a little bit about the assessment tool that we used to determine quality and whether or not the tool met these different criteria that Jeanne was just talking about.

Because I think that's, it's not a secret tool or something that you have to have a whole lot of specialized training to use. It's a tool that's freely available, you know, in the literature and out there, and it's called COSMIN. Jeanne, do you have the abbreviation definition for COSMIN? 

Do you know what?

Jeanne Marshall: I was just looking it up and now I've lost where you all are. So I'll 

find you in a minute. 

Memorie Gosa: I have my COSMIN Bible here on my desk. 

Jeanne Marshall: Oh good, you read it out. [00:30:00] 

Memorie Gosa: So much. Hold, please. I will find it. 

Michelle Dawson: This, this reminds me of the pneumonic when it's the, Oh, Oh, Oh, to touch and feel for the 12 cranial nerves. Like, I know I know them, but like, let me, let me pull that from the recesses of my brain.

Memorie Gosa: Yes. Well, COSMIN was, has been out since 2005, I think. And it stands for the consensus based standards for the selection of health measurement instruments and it is in an initiative that was started by an international multidisciplinary group of researchers With the aim to improve the selection of outcome measurement instruments both in research and in clinical practice So that was that was the goal and it's updated It's been updated since its initial introduction into the literature in 2005.

There continues to be a working group, a steering [00:31:00] committee that meets to update the different tools that are there. So to use COSMIN then it involves reading, First you have to identify all these papers. So we worked with a research librarian to develop our search strategy and narrow it in so that we were able to identify I don't want to say all because that sounds so definitive.

Jeanne Marshall: Yeah, most of many as we could. Yeah, 

Memorie Gosa: as we reasonably could tools that were available that were specific to the PROM tools that were available that were specific to feeding skill. And so the librarian helped us to do that. We also had some. Some research assistants in Jeanne's lab that were helping to put this information in there.

So once we had the tools identified, we did a screening. So it was much like an evidence based systematic review, right? You had a systematic structure in place that helped you find the articles. You did a title screen first. A lot [00:32:00] of the information could be, or a lot of the papers could be excluded based on that title screen.

And then we went through an abstract screen, additional articles were removed after that. And so then we were left with our final set of tools that are problems that we were then using this COSMIN framework to evaluate. So the COSMIN framework helps you to identify how the tool was developed. So Jeanne said earlier, a lot of tools sometimes are just made up. Well, yes, all of them were initially made up, but how they were made up matters, right? So who was involved in that conversation? What disciplines were represented in creating the questions that were being asked? put onto the paper, then how were those how are those questions tested?

You know, were they, were parents of children that were going to be filling these out part of the pilot process? What types of changes were made after the pilot data was collected? How was the pilot data collected? Was there [00:33:00] blinding used? What was the rigor around data collection for that? How many parents were part of that?

So that is the initial part of the COSMIN tool is helping us to understand how the tools were developed and what kind of rigor was used in that. And that's not to say that those that don't. that didn't score high in that area weren't necessarily done with careful thought and consideration, but those that, that scored higher, that increases your confidence in the the way that the tools were created.

Jeanne Marshall: The The authors of the COSMIN Memorie really assert that that element, like actually involving people with lived experience of pediatric feeding disorder or being a parent of a child with pediatric feeding disorder, that element is a really, really essential component of a PROM. So those PROMs that did have good data, What's called content validity the much stronger performing [00:34:00] PROMs.

Michelle Dawson: How long did this take? 

Jeanne Marshall: This took a really long time. 

Michelle Dawson: Y'all both just were like, 

Memorie Gosa: again, this now lives on my desk. This is when Jeanne and I meet every few weeks. We just go back to this tool often, right. And cause it seems easy enough on the surface. You're just answering questions about the tools, but the terminology that different disciplines use, and the way that tools are described, and what one group calls content validity, maybe what another group calls construct validity, might not have been included in descriptions in some papers.

So, it really takes It took Jeanne and I a long time, especially as we were getting started to go through them and identify these pieces. And with the COSMIN, you are coming to consensus together. So we would write them individually, and then we would meet together and [00:35:00] look at how we rated. The different tools, and if there were discrepancies, and there were, especially in the beginning, you know, as we're learning the tool and what all of the terminology means, then we would have to have it out with one another about who is right or who is wrong, or was the answer actually somewhere in between the two ratings that, that we assigned.

So it is a, it is a lengthy process. 

Jeanne Marshall: Yeah, yeah, it did. It took I don't even know how long it took. I don't like to think about it. Memorie. I feel like we started kind of mid 2021. 

Michelle Dawson: Oh, again, dog agreed with that. And that was not a dog. That was a bird. But so this has been going on for it's 2024. Bloody hell. That's like almost three years worth of. Right. 

Jeanne Marshall: We've finished and published the PROMS review, so that one we've done, that [00:36:00] one's available. But now, now we've been working on looking at clinical assessment tools. So we're in the final stages of finalizing. those, the evaluation of all different clinical assessment tools that are available.

Memorie Gosa: Logical next step. So we get that perspective, but then what are you using in your clinic? And there have been many evidence based systematic reviews published on the different tools that are available for children under six months of age. And those that are over six months of age and those that are you know, transitional feeders versus Full like adult diet feeders.

So there are lots and lots of tools there and there's lots and lots of information about from an evidence based systematic review standpoint. But what Jeanne and I were interested in specifically is, okay, If this tool scores well, and there are plenty that it comes out and says this tool works, is it available?

[00:37:00] Because a lot of our tools are no longer in print or they're expensive or they require training, you know, for, for us as clinicians to use them valid to have them have valid results and for us to use them reliably. We'd have to go through training and that information is not readily available from the systematic reviews that are out there.

There are really good systematic reviews there, but the clinical nuance of the tools was not captured in a lot of the reviews that we read. And so that's what we're trying to add with the COSMIN review of the tools that we've identified is how did they score? And then clinically, can you get them?

What kind of training's involved? What kind of financial investment is there? And then what populations were these tools designed for? Because many of them, you know, score out and it says, this is a valid and reliable tool to assess clinical feeding difficulties. Great. [00:38:00] The nuance there is that it might be for kids with neurodevelopmental disabilities or it may have been formed on kids with or autistic children, or it may have been done on kids with upper air digestive tract anomalies.

And so the population really matters. And so in the work that we're doing, we're trying to organize that information. 

Jeanne Marshall: Yeah, and then also. Really looking at how it maps to those different elements of the feeding skills domain, too. So what, you know, what is captured in the various different tools?

Swallowing, chewing. That we've looked at, yeah, yeah, which elements specifically. 

Michelle Dawson: But this is a conversation that Erin and I have all the time. Most of the babies that we serve don't fit one box. Mm hmm. They're, they have, they may be autistic, but I and her and I have both worked with plenty of patients that are autistic, but they might have an underlying cardiac issue or a comid [00:39:00] comorbid air digestive tract component or like it's not,

Jeanne Marshall: Yeah, just speaks to the complexity of humans and PFD in general, doesn't it?

Memorie Gosa: But knowing that information and knowing the tools that you've selected, who they've been validated on previously, I think helps you make an informed decision about what you're going to use in your work clinic because it you're right. It is multifactorial all the way across the board off. Usually the that we work with There's something from each of those four domains that are impacted for this child and their family because of their feeding disorder and so understanding how to quantify or describe all of the different issues then helps us to track those issues and improvements and that the, that the child makes in those areas so that we can show gains that may not be just readily obvious if we're only using a clinical assessment.[00:40:00] 

That's where the PROM piece is so important. 

Michelle Dawson: Well, then my next thought is, is this unique just to an outpatient clinic, or what about our inpatient colleagues as well?

Memorie Gosa: Yeah, it's important, I think, across all of our different settings, but the tools that you may use are going to be different, and the focus is going to be different depending on the setting. I've worked in a, in a Inpatient and, you know, acute care environments. So is Jeanne probably. You guys have it? Mm-Hmm.

Well, in addition to working early intervention and now working in a, you know, in an outpatient clinic base, I think the full weight and the full impact of PFD is felt more so in our outpatient settings than in our inpatient settings, because in an acute care setting, the focus is on nutritional adequacy and safety and get 'em home.

Right, because that's where they're going to flourish and that's where they're going to have a better chance of improving across all the other areas if we can get them, you know, out of this kind of [00:41:00] artificial medical environment. So I think while all of the aspects are important across all the different settings, I think in an outpatient arena is when you're going to have the best opportunity to impact and improve across all of those settings.

Erin Forward: And your scope, like I now in my role, I'm inpatient two days a week and then see our inpatient to outpatient transition. And it's been very eyeopening. Our scope just gets bigger as children leave the hospital because there's not as many providers all right there making all the decisions together. And even being at the hospital, sometimes I have trouble getting a hold of people.

a doctor or somebody or who's in charge of what once they're no longer in this acute situation. And to Michelle's point, a lot of the children I see have so taken care of by so many specialists. And sometimes it's like, wait, who's in charge of their two feet or who's in charge of [00:42:00] this or who's in charge of that.

And so then we're having to also take that case management type role as well, just to get answers. And I think I had to learn too, I mean, The surgeries that we do at the hospital that I'm at are some of the most complex surgeries I've ever seen. And we, I love being in both settings because it reminds you of the difference of your perspective as children go from one setting to another, whereas you have to be very niche in that inpatient setting when you're on the complex airway floor on the cardiac floor.

Because there's so much to know, but then you almost forget what it is that is so specialized that you understand that maybe the outpatient therapist isn't going to know, and that's okay. They may know they had a big cardiac surgery. They may not know all the intricacies of the surgery, but. It does shift so much to that, to that point.

Memorie Gosa: Yep. 

Michelle Dawson: That gets [00:43:00] back to an identifiable theme that the topic committee kept coming back to this year was that the continuum of care and who has ownership and responsibility from inpatient to outpatient, to home health, to schools, whose responsibility is it? to reach out. And essentially the onus is on all of us.

It's a non billable code. Even it's, it's not billable time, even with the new caregiver CPT code coming out because we're both licensed professionals. So we can't bill anybody for our time in continuity of care, but good quality care. We'll focus on Carving out a few minutes in the day to reach out to the colleague that had them previously or who you know will be receiving them.

It's just, how do we make those [00:44:00] moments possible? And I don't have a solution for it. It's just a, We truly are all interconnected in what it is that we do and having high quality tools to do a high quality assessment better equips us with communicating the results of those assessments to future and current colleagues that are involved in care.

Jeanne Marshall: Yeah, that's exactly what I was going to say, Michelle. Like using a predictable tool or battery of tools to be able to communicate your results will improve your handover quality, I think. Nice. Because, Yeah, I mean, I, I think the journey of supporting a family with feeding needs often does start in the hospital, even though you, you kind of feel that full impact in an outpatient setting potentially.

I know a lot of the families I've worked with, sometimes feeding is what's [00:45:00] holding them at the hospital. So it might be like, okay, well, once they're feeding better, then they'll get to go home. And then all of this pressure and stress. It's sort of comes around, well, they need to be drinking more. They need to be, you know, drinking more to get off this tube or drinking more to be able to go home.

So we can trust they're going to be able to, to cope at home. And then, you know, things can fall apart in terms of communication, but the parents at the center of this really complex storm. So yeah, it's really, really tricky, isn't it? That sort of whole continuum of care. But I guess we've always got to remember that the parent and the child are at the middle of, of that 

Memorie Gosa: to Michelle, what you and Erin are speaking to is, is kind of phase three of, of what started with a conversation around What do you use in your clinic to, to evaluate kids with PFDs?

Is around the outcome measures that, that we should be reporting. What are they? The [00:46:00] metrics that really let us know that a child is making progress towards a more functional feeding situation for that family. And that can look like a lot of different things, right? So the goals are individualized to what is that family's definition of successful feeding, what does it look like for that family?

And so Jeanne and I along with our colleague, Pamela Dodrell have talked about what are, what's the outcome measures that we should all be discussing so that when we do these handoffs, we can say. They're currently doing X, Y, Z. The goal is for them to do A, B, C. So we can communicate the same way around that kind of centralized outcome measures set.

Michelle Dawson: And then I'll add in the piece and I'll toot Erin's horn. I hate writing goals. Like, honest to goodness. I mean, I hate writing goals because I came from [00:47:00] the training of deficits based. I was taught to write deficits based. If a child fails this on a standardized assessment, or they fail this on a clinical swallow, then that's what you're going to write the goal for.

And good Lord, I remember administering the PLS 4 and writing 12 to 15 goals, because that's what we were trained to do. Yeah. So glad we don't have to do that anymore. But Erin writes the most beautiful strength space. goals I've ever seen. So I get her to mentor me in that, but it's, it's that advanced training that you did.

I know, I know you told the training that you did from like DAR and like the trauma informed care, but like her goals make it feel more tangible that I don't know. It just feels hopeful when you read them [00:48:00] as opposed to some reports when you read them and it's just, I don't know, they leave you with a pit in your stomach about where the child currently is as opposed to where we could go. So yeah.

Thoughts for the conversation on transition. 

Erin Forward: Well, I was going to say on that too, like, I think, and I always say this, that our first job is to understand where the family is. Because it's very easy to, to do an assessment and be like, this is what the child's not doing, or this is what the family isn't doing.

But how do we work to understand what is working and what they've been going through and meet them there? Because just like with anybody, with any child you're working with, any family, if they don't feel understood, they're not going to trust you and they're not going to want to follow, you know, what they're going through.

And a lot of that is just. attuning and acknowledging, like, especially when I see the kids that have [00:49:00] been inpatient, I need to acknowledge what you've been through. I need to acknowledge the trauma that you've experienced. I need to also acknowledge that you may have seen a speech therapist inpatient for weeks and you may not remember their name.

And that's okay because you had a million people coming to your room. And so you might need me to re explain what we're doing here and to not make you feel bad about it. So there's so many pieces of like, let's understand where we are. And then And I, you know, and I've talked a lot about this with any type of eval, like I do read some evals were like, I don't know who this kid is.

This kid could be any, this could be any kid. I have no, I understand what they can't do, but I have no understanding of what they're actually doing. And so that's where these, you know, if we get these measurements too, but then use them in a way of like, let's explain what the child I might see is going to be like, because if it's just an eval report that says they can't do this and can't do this and can't do this and can't do this, that gives me no information.

Jeanne Marshall: Yeah, and actually, it's interesting in the big sort of circling back to the big review that we did about the different PROMs. One [00:50:00] of the things that we did was we mapped all of the different items in the PROMs to the ICF model. So we looked at, okay, Does this measure just elements of impairment? So, you know, eating and drinking skills, can they chew, et cetera?

Does this measure elements of activity? So can they use these measures, these things, these skills within a meal, but then does this also measure elements of participation? So, you know, does this impact them being able to go out to dinner? Can they go on a holiday? Can the family get a babysitter? That sort of thing.

So we actually found that, unfortunately, very few of the PROMs actually included participation items in there. Yeah, there were, there were a couple though and they are described in our review. So, we would encourage you to use. PROMs that do capture elements of social participation just because that is such a major part of PFD that, that's really emerging at the [00:51:00] moment in the literature is something that's just so important for us to measure and so important to families as well.

Michelle Dawson: So can you, can you recommend your, your, your top tier, so to speak? 

Memorie Gosa: Yes. Yeah, 

Jeanne Marshall: I think so. I mean, we've written them in our paper. 

Memorie Gosa: Jeanne or or me or Pamela Dodrell is the other author there and we can share a copy if people are interested. We can always do that. There's no rules against that. And so I had just pulled it up to look and give you some information there.

So on tables both two and three so table two goes through the methodological quality there so it's going to talk about the cross cultural validity. Has it been tested in more than one group of children? either different diagnoses or in different Countries and, and, and truly different cultural variables there and it's responsiveness and hypothesis [00:52:00] testing and all of that.

And then in the other table there's the scoring methodology that gave us information about the quality of the tool there so parents can get to that. So one of the tools that I remember is the feeding impact scale that's from Estrom and colleagues. It gives some information there about feeding impact on participation.

And then the, is it the F S I S, the Leftengreif tool also gives some information about a child's or the impact of the feeding difficulties on the family's ability to participate in things that are important to them. 

Jeanne Marshall: Yeah. Yeah. Yeah. I think those were the main ones Memorie that captured those social participation elements.

Michelle Dawson: So the feeding impact scale, excuse me, does not look like it cost anything.

Jeanne Marshall: No, it doesn't. It's freely available. [00:53:00] 

Michelle Dawson: And then what was the other one? You said it so fast, but my fingers were too slow. 

Jeanne Marshall: Feeding, swallowing, impact. Survey. That's also freely available. Yeah. So you should just be able to get it through the primary paper that reported that in the first place.

Michelle Dawson: Okay. And came out in the dysphasia article. 

Memorie Gosa: And then I think a lot of these. I'm looking at our list now. I don't, I don't believe that any of them required purchase that'll be different in the paper that we're working on now, or we're talking about the clinical assessment tools. Some of those you need to purchase or go through training specific to be able to use them.

But the PROM tools are were available in the literature, we were able to access them without purchasing anything separate. And I know that evidence based care is important. And it's also difficult for clinicians that aren't affiliated with a university or like a teaching hospital to [00:54:00] access. You know, research articles.

So I think it's important to remember that you can always email the author. And they can share the article with you. And I will not speak for every researcher everywhere, but I'm always happy to. 

Jeanne Marshall: Yeah, me too. 

Memorie Gosa: Nobody cares. You're like, Hey, can I get a copy of this paper? Yes. And do you, would you like the rest of my papers to share with them?

You can always reach out. To the first author and they can share the paper with you. And so if it's behind a firewall and you're interested in it, then, then you can do that. 

Jeanne Marshall: Yeah. And as an academic Memorie, it's actually one of the things that at my university anyway, is a measure of impact. So how widely your research is being felt in terms of, you know, are people contacting you for it? Are people sharing it on social media, people talking about it. That is all really important in terms of, of the impact that you're having as a researcher in the world. So always welcome to contact [00:55:00] me. 

Michelle Dawson: Last week it got brought up about the ivory tower came up in a conversation. So folks, if you're not familiar with the ivory tower, it is the concept or notion that research is done essentially for the sake of research to be hoarded and to be holden in an ivory tower. However, I have found the opposite to be true within our field of PFD.

I have found that those that are doing the research truly want to make it clinically applicable and that everybody wants to share to get the word out to improve what it is that we're offering. So, I don't know. I've seen Rapunzel. Every time anybody says ivory tower, I'm like, I met Rapunzel. So like, and like, The happy Rapunzel, not the grim fairytale version where like everybody dies.

Memorie Gosa: All of the researchers that I'm aware of came into this with, good intentions, right? Like [00:56:00] they were interested beyond the information that was currently available. And so then took on extra training so that they could add to the information, you know, that's, that's in our profession that clinicians can use. Basic scientists too, like everyone has a goal in mind. And I can tell you in, I mean, you could guess just from us talking about the, kind of the slog that was going through this process, nobody's doing it just Have it sit on a shelf and it not be applied to the world at large. Even basic scientists, clinical researchers like Jeanne and I, I mean, everyone is, is working to impact something specific.

So, I would encourage and say, reach out to the to the researchers to, if you need their papers or have questions, then, you know, that, That's part of what they do in an academic setting is to provide that information to the public and, and to, to [00:57:00] disseminate the information broadly. 

Michelle Dawson: Yes. So can I be nosy and ask what you use in your clinics?

Memorie Gosa: Yeah. So I can tell you here that in our comprehensive assessment, we do something called the adapted pre feeding skills checklist, which is something that was introduced by Dodrell and Marshall and some of her earlier work on the, is it called the help study that you guys did, Jeanne? 

Jeanne Marshall: Yeah, a long time ago.

Memorie Gosa: Yeah, that was their tool. So we used That here, and we've done some internal work to validate that that's not published yet, but that's our measure where we're looking at feeding skill. That's the tool that we use here. We use the parent stress index to give us information about parent help and how they're managing the stress of, of having a child that has feeding challenges.

We use the sensory profile to give us information about sensory domain. [00:58:00] particularly looking at the oral sensory processing area of that tool. But the tool in general gives us great information and helps us make informed referrals for occupational therapy. Since I work in a, in a speech clinic here we also do a general developmental kind of screening tool, but it's a PROM that parents fill out.

It's the developmental profile. I think we're on version five now, may still be four, but developmental profile four or five. That gives us that general information. We do the, Pediatric, the Behavioral Pediatric Feeding Assistance Scale, the BPFAS. And then we also do a bit of an unstructured snack opportunity where we ask parents to bring food from home, something that they know their child likes to eat, and something that they would like for their child to eat, something that their family eats that they want their child to enjoy as well.

And then we let them, eat together without us in the room. And we go back and evaluate [00:59:00] that for specific behaviors, you know, that may be interrupting the feeding process. So I think that's everything off the top of my head. 

Michelle Dawson: So then the immediate clinical suit question wearing that hat is, How much is sent home for the caregivers to fill out in advance versus in the moment versus what do you pick up on the follow up session?

Memorie Gosa: Yeah, we send all of the things that the parent can fill out themselves that don't require like an interview type. Response home ahead of time. Now, they don't always fill it out ahead of time, but we send it out at least a week in advance with instructions to say, take your time, maybe one a day, fill these things out and bring it back with you.

There's also a structured interview and we use the ASHA CSE clinical swallow evaluation report template as a guide for evaluation questions that we ask the family to get developmental history, feeding history, [01:00:00] and just general medical history there as well.

Michelle Dawson: It's incredibly comprehensive, but that's what the purpose of a dynamic assessment is. We on our second session, we follow up with A modified version of the McWilliams routines based interview to like hone in on where in the course of the day are your specific breakdowns. But that also allows us to add in the questions about the language.

Because I mean, most kids that you're seeing, there's the language component in conjunction with the feeding. And so it allows us to, to kind of. Okay. Well, while we're doing this two birds, one stone concept, where is the communication breakdown and is that, is the mealtime even more impacted by when emotions are high and we don't have the vocab, we don't have the, the communication. So, but I now know 

Memorie Gosa: that I'm going to order from Roderick Williams is here at the university of [01:01:00] Alabama. Yeah, he's in the college of education. 

Michelle Dawson: Oh, I have so many ideas. 

Memorie Gosa: Listen, legends are made right here. 

Michelle Dawson: I, I want to create a pediatric feeding disorders routines based interview.

That's what I want in the world. One specific for it. 

Memorie Gosa: We'll write it down, and we'll see what we can do. Jeanne, what's different about what you do at your clinic versus what we just talked about? 

Jeanne Marshall: Look, I mean, most of my focus at the moment is research so I don't do a huge amount of clinical work specifically, but the types of tools that I've used historically in an inpatient setting there's quite a useful, it's called a pediatric inpatient assessment scale for severe feeding problems.

The PASF which is specifically for tube fed children which asks sort of, it's a PROM as well. So you can get some information about how things are affecting the family. And then the early, early feeding skills assessment [01:02:00] from Suzanne Boyer is quite useful as well for infant feeding which is predominantly the clinical space that I've occupied more recently.

Historically we've used things like the BPFAS quite a lot. And we've used the PBA the Parenting Stress Index as well. And I've also found quite useful in the past asking parents, like if I'm going to send something home, I'll ask them to fill out a bit of a food diary, but it's also got information about what's happened at that point in the day.

So a little bit like a combination of what you were talking about, Michelle like saying, okay, what what was happening at that point in the day? Were they tired? What happened? What type of textures were offered? Was this a new food? So it's not just tell me about, you know, what volume and type of food they ate.

There's a lot of kind of richness of information about what's happening. in terms of behavior and response and [01:03:00] what else is happening for the family at that time, so that I can unpack a bit about what's happening in the home environment. And then, I mean, I know we, we said not to make stuff up, but we have a few tools. 

Quite a few years ago now, I worked with a few clinicians to put together, like we pulled together. from a whole bunch of research evidence, some normative data and put it all together into some clinical assessment forms. So we've got a clinical assessment form for infant feeding, one for transitional like oral motor type development kids, and then one for children who have more of a restricted diet as well.

So because there were no fit for purpose Forms that you could use as a catch all. We have got those that are quite useful and semi evidence based, like they are, they've got information from the literature, but it would be great to actually validate those as a means of, of assessment. [01:04:00] Yeah. So that's, those are the main things that we use at the moment.

Memorie Gosa: We ask for a three day diet history, but most often we end up doing like a multi pass, 24 hour diet recall because it's hard for families to do that three day diet history, especially for our school age kids. The majority of the things they eat, the parent doesn't see. Yeah, absolutely. We ask for a three day diet history, but we most often get a, like a multi pass, 24 hour recall type in there.

Jeanne Marshall: Sometimes even asking the family if, if it's feasible to take photos, like use their phone to take photos of some of the things that the kids are having across the day can give you an idea without them having to write it all down of, you know, the texture, the volume of what they're having. 

Michelle Dawson: I am completely guilty of creating the report that I needed because what, but what I needed [01:05:00] was something to coach the students through and how to ask the questions.

So I built what I needed and, honestly, part of me like wants to send it over to you for review, but then at the same time scares the bejesus outta me to have y'all put a a what is it that the cos 

Jeanne Marshall: COSMIN, 

Michelle Dawson: I want COSMIN done to it. Yeah. I want you to COSMIN my eval, but at the same time. . . Erin, what about an outpatient efficiency?

Erin Forward: Well, I think that's I will very likely take a lot of this information to our outpatient clinic, because we've done a lot of building our own and, you know, I've, we've been very lucky at our clinic to have a lot of information from Claire Miller, who's really like grown this clinic and so, I think that we've talked, I've talked a lot with my manager about, I use the parental [01:06:00] stress index with my families, especially in our inpatient outpatient program, because that's a big measure.

You know, we've been, because the other thing is when you're building a program, what are we measuring the success of the program? Like, what does this look like, especially with these patients that mine specifically are, my goal is not necessarily And within this program to get them to their most optimal outcomes overall, it's really to get them feeling comfortable with feeding after they've been in the hospital so that they feel like they have more control over that.

So I've used that. We've definitely used the behavioral feeding measurement that you both were talking about. And we also, and I don't know if, if this is one that I'm sure it's one you all have measured, but, and you have to be trained to do it. But the dysphagia. I'll have to find the name of it.

Yes, we started because they and they do the behavioral feeding. That's the measurement we use a lot in our interdisciplinary feeding program. That's kind of what they've [01:07:00] used as a whole to Measure outcomes there as well, which I think has been really helpful because we have OT Speech and registered dietitian all going in at the same time and asking those questions together and kind of collaborating So that's been a really good measurement for the team the interdisciplinary collaboration 

Jeanne Marshall: And I think I mean I don't think that we can completely move away.

There is no catch all assessment that we can do that's going to meet perfectly the needs of every child and family. We've already established that this area is so multifactorial. But I think what we're saying is just to try and incorporate some of those. measures as a part of your whole assessment battery for some of these kids will be helpful because if we are using them like more consistently and using the stronger measures more consistently, then we'll more able we'll be able to collect kind of information [01:08:00] about the whole group of children. Yeah. 

Memorie Gosa: Michelle, if we go back to the question that you asked us about recommendations, The whole study found 14 different PROMs across, I think, 22 different papers, because some of them had been reported on in multiple papers that are appropriate for use in determining or assessing the feeding skill domain for PFD.

The ones that had the stronger content validity scores were the PDE, which we've talked about and the CHOMPS as a parent reported measure of oral motor skills. And they actually measure different skills across those, both of those tools. And then the feeding, impact scales, the FIS is the one that scored highest.

That includes some measure of social participation. So those were the three that in the conclusions of the paper were recommended based on how they scored in the COSMIN. But all of them, Some of them, it just depends on what you [01:09:00] need in your clinic, the types of kids that you're seeing and the needs that you have.

And then within the paper and those two tables you can look at the 14 different tools and see which ones might work best for the population that you serve. 

Jeanne Marshall: And all of those were freely available. We found so. 

Erin Forward: Yeah. And it's also, I mean, the more you know, Yeah, so much of what we do in feeding.

There's so much critical thinking. There's so much of, you know, Experiences that we've all had as clinicians and what we've learned from our patients and our caregivers, but the more Information we can have in regards to the assessments the more comfortable Younger clinicians can also start to feel in having these resources because it is kind of if as a You with my communication and language patients, I had to remember everything that I was every piece of information I was supposed to get.

I mean, that's a lot in creating these assessments. You [01:10:00] know, I think there's a lot of clinicians, Michelle, like you said, you built an assessment you needed, but you have all of this clinical experience and you've taken from these other assessments to know what you needed. But for younger clinicians to have something that I'm getting the information I know I need.

I'm going to also need to use my critical thinking skills, but I feel a sense of safety and comfort in knowing this assessment is well measured and well documented, and I'm, I'm getting a good picture of this child without having to, you know, pull all these questions from. Nowhere, essentially. 

Memorie Gosa: Forget things if you don't have kind of a way to interview.

Erin Forward: Yeah. But like when you forget, you're like, I forgot that one question and you just like beat yourself up or an e mail. Oh my goodness. And then, yeah. 

Michelle Dawson: Then that gets us back to the big picture of how many students, how many younger clinicians are currently getting a pediatric dysphagia, [01:11:00] pediatric feeding disorder class that's mandatory, as opposed to maybe a one night lecture embedded in within an adult dysphagia class, and goodness gracious, are they actually getting any hands on in a clinic or in a practicum, and then if they're not, then they're They're just tossed to the wind and it's like, good luck, Chuck.

You have a degree, go save the tiny humans. And then that scares the bejesus out of me because like, we have the things that I wish to solve in the world. But but this is, Oh, I have so many ideas. 

On that note, if somebody, cause I do realize that we're all over on time if somebody has additional questions. Is there a way that they could reach y'all? How would you prefer them to contact you? Also, everybody please join ASHA CIG 13 and attend feeding matters because these are very, very, very critical things to your growth as a [01:12:00] PFD clinician, but what are your thoughts ladies?

Memorie Gosa: I think Gina's going to represent us at the upcoming International Pediatric Feeding Disorders Conference. So she's going to bring this information there, and I think at any conference where you see us or we're presenting, we're happy to answer questions and talk then. I'm happy to talk to people through email, but I'm slow in email because You get so many that are like actually job or student related that have to be addressed in your eight hour day.

And so oftentimes that can be a slow way to respond, but I'm happy to to do that. 

Jeanne Marshall: Yeah, I'm happy. I'm happy with email as well. It's totally. Great. 

Michelle Dawson: Thank you. All right. Now, next very important question. If anybody has, as my grandma calls it, a little bit of mad money land or that's what she calls her extra pocket money at the end of the month.

But is there a scholarship or an entity where you would [01:13:00] recommend that they could donate it to? 

Memorie Gosa: Well, I mean, Feeding Matters is an obvious first place because I feel like they're doing such good work around PFD. Another One that I would, that I would promote because it benefited me in the past is the Ash Foundation. So they are providing scholarships to clinicians, to researchers, and to students to help advance knowledge in our field. And so I think they also do terrific work and are great stewards of the money that, that they have. What about in Australia, Jeanne? 

Jeanne Marshall: Oh, look, I usually suggest people donate to Feeding Matters actually, in the absence of having anything else that's PFD specific. That's usually my area for advocacy. 

Michelle Dawson: Folks, if you want to learn more, we've had Feeding Matters on a couple of times in the past. So we always recommend you go check out the. episodes. But last year we also were fortunate enough to have the [01:14:00] Ash Foundation come on. And we had some recipients of the scholarship donations to come on.

And it was a panel discussion about where that money went. So I can tell you right now, if you get on the wild world of the internet and read all about The naysayers of Ash or ASHA or the Ash Foundation. This is the hill that I will die on. Nothing's perfect, but they're doing really, really good work in the process.

So, I would recommend those That scholarship. So also one of a couple of my students over the years have been recipients and that's just that's delightful. 

Memorie Gosa: Yeah, it makes a big difference in master's degrees and in doctoral study when when you have scholarships to help you through that. 

Michelle Dawson: Yes, especially when it comes down to paying your, your grocery bills because at the end of the day,

well, ladies Erin and I are ever so grateful for your time. And thank you. Thank you. Thank you for sharing. And we will see y'all folks, if you haven't done [01:15:00] so already, be sure to check out the First Bite podcast on Instagram. You can catch upcoming episodes or whatever delightful initiatives that we have taken on Erin and her sweet friend, Taylor, and the process of setting up I think it's bi monthly a book reading club that will be turned into episodes. So, to grow our skillset together and kind of be nerdy SLPs together. So, stay tuned there and everybody. Thank you so much. 

Memorie Gosa: Thank you. 

Jeanne Marshall: Thank you.

Speaker: Thank you for joining us for today's course. To complete the course, you must log into your account and complete the quiz and the survey. If you have indicated that you are part of the ASHA Registry and entered both your ASHA number and a complete mailing address in your account profile prior to course completion, we will submit earned CEUs to ASHA.

Please allow one to two months from the completion date for your CEUs to [01:16:00] reflect on your ASHA transcript. Please note that if this information is missing, we cannot submit to ASHA on your behalf. Thanks again for joining us. We hope to see you next time. Feeding Matters guides system wide changes by uniting caregivers, professionals, and community partners under the Pediatric Feeding Disorder Alliance.

Michelle Dawson: 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 [01:17:00] and sign up today. Change is possible when we work together. That's a wrap, folks. Once again, thank you for listening to First Byte, 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.

And as always, remember, feed your mind, feed your soul, be kind and feed those babies.