[00:00:01] Speaker A: Wouldn't it be great if you could access some of the best sessions from the Feeding Matters International PFD Conference whenever and wherever? Well, good news, you can. Our On Demand conference lets you access key sessions and more on your own time. You'll get high quality recordings of sessions that discuss the intersection of food insecurity and feeding disorders, that explore how a holistic multi domain view of PFD improves diagnosis and treatment outcomes, that identify actionable steps that will propel the field of PFD forward, and that answer the question, what does success look like during the Shannon Goldwater Summit for Change? All of these amazing on Demand offerings and more are available for viewing beginning March 1 through April 30. We have great on demand pricing for families, students and healthcare professionals, including a healthcare professional's group rate. Visit feeding matters.org conference to view the on demand agenda, see available CEUs and register today.
[00:01:07] Speaker B: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
[00:01:17] Speaker C: Feeding Does Matter hey everyone. Welcome to Feeding Does Matter. We are taking a little bit of a break this week because Feeding Matters and the team, we are still very much in our conference haze. Hopefully we're seeing you in the On Demand platform as you're learning some of the great work that was done by all of the speakers and presenters for the conference, both in person and on demand. So in lieu of a guest, we've got just a short episode for everybody today and Hayley and I thought we would take the time to really spend sharing a little bit more about our consortium work because I know we've shared a little bit about our family centered PFT Research consortium and it was definitely the genesis of this podcast. But we thought as long as we needed a little small episode, we would give an update on where the Consortium is at and some reflections that we have in working with them with where we're at right now. So Haley, I don't know if you want to share a little bit about. I know that our listeners have probably heard it before, but any like overview of the consortium itself?
[00:02:29] Speaker B: Yeah, I'll just go ahead and share that. We did have a meeting with the consortium. So our family centered PFD Research consortium met prior to the conference and so that was a hybrid meeting we had. Some of the leadership from the consortium were there in person and some were there virtually with us and then the rest of the consortium was there with us as well for part of it. And the purpose of that meeting was to work on setting up research prioritization for the field of feeding from A family and patient centered lens.
[00:03:11] Speaker C: Yeah, I think so often, and I know I've heard providers share this with me personally too, that are practicing out in the community. The research that is coming out isn't always inclusive or doesn't always keep in mind all of the things that families and individuals experience and what maybe they need in terms of supports for their journey. And so we were really excited, Haley and I, to even get to this meeting. It felt like it was this big lead up to this one meeting where we would choose these priorities. And the meeting itself was really, really wonderful to be able to blend different perspectives together because like she said, we had consortium members who have that lived experience of either being a parent or a caregiver or an individual themselves that struggles with feeding and struggled as a child with feeding. And also we do have some professionals that have the lived experience as well. So they were able to kind of bounce between those different lenses. And then our subject matter experts are our project team members. And that was many different types of disciplines and perspectives inclusive of physicians, psychologists, feeding skill perspectives, wic, the Women, Infants and children. Yep, Women Infants and Children and disability advocate, and another parent perspective in that regard too. And so lots of different perspectives. And it was a blending of perspectives and coming together. And I think that says Haley and I have been downloading what that meeting was about. We've also had a lot of perspectives that we've been thinking about as this work progresses. And one of the things that I think everybody calls for is more family and patient centered care. And I don't know about you, Haley, but I feel like this project in and of itself has been like a great exercise in, you know, how to do that and how do you blend different perspectives? And everybody's got different needs and everybody talks in different language. And so how do you blend all that together?
I don't know if you've got any thoughts on that.
[00:05:30] Speaker B: I do.
I think it's an excellent exercise in communication. And just when you think you, you might be getting it, make sure that you're actually getting it again. You always have to always be checking and making sure that you're clarifying your understanding.
And never, never, ever, ever assume. Always make sure that you're always circling back and clarifying that understanding again. Always make sure.
[00:06:01] Speaker C: Yeah, always double check, really clarity in conversation and making sure that the words everybody is saying, everybody's interpreting those the same way. And I think, you know, we've talked about that a lot on this podcast in different ways. But I, I often think sometimes I'M thinking about that, as are the disciplines that treat pfd. Talking to each other with the same words, meaning the same things.
But I think the divide is even greater. Well, yes, I know that they're not. They're not.
But I think the divide is even greater when you're looking at professionals and the language of professionals and then the language of families and patients. And the process is much slower. To do that double checking and to make sure that we aren't assuming and just on the point of assumptions, too, or even preconceived notions, I think is really challenging when it's your.
The role that we asked our consortium members to fill was something that was so big. And I think it'll be interesting to have them on to talk about the meeting and how they're feeling about it and their perspectives on it, because I do worry that the weight. The weight of it in how transformational we want it to be for the field can probably feel really challenging too. And I just know that whenever I'm even talking to individuals within the community, too, there's. It just always seems to be like, different preconceived notions or different assumptions as you're talking with X individual or X discipline or ex parent or. Or provider even. And so it's. It's hard to check those things. It's hard to check, like, what are the assumptions I'm having and is. Am I interpreting language in a different way because of that?
[00:07:54] Speaker B: I. I know that I think I said this at some point during conference to some of the other consortium members that, like, for myself, like, being kind of in this dual role as a parent and as a professional, it can be kind of weird sometimes. And when I first got into this, it. It took a while before I was able to be seen and to gain entry into the world as that professional role. It took several years.
[00:08:29] Speaker C: Yeah.
[00:08:30] Speaker B: To gain trust and to have entry in that way.
[00:08:35] Speaker C: What do you think it was? Do you think it was. They were just. Just in general, people were just seeing you as a parent first or not realizing qualifications or. What do you think?
[00:08:47] Speaker B: I think it is a matter of, you know, like, getting past assumptions and establishing trust and, you know, everybody's ultimately on the same side.
[00:09:00] Speaker C: Yeah.
[00:09:01] Speaker B: Yeah. Like, we're all doing this to help kids and to help families.
[00:09:06] Speaker C: Yep.
[00:09:08] Speaker B: I think that people can be nervous at first.
I think at the end of the day, it became clear, you know, that.
But. But I think at first people can be nervous.
[00:09:24] Speaker C: Nervousness does get in the way of, like, clear communication. I mean, like when you're best friends with someone, you're understanding each other a whole lot differently than when you're meeting someone for the first time and really trying to, like, double check that what you're saying is being interpreted in the right way. And it's just all those pitfalls in language and communication that, like, I think we tried to try to really be cognizant of as we're moving this work along, not only just within the consortium, but also the field in general as we work to clarify language broadly.
[00:09:54] Speaker B: Right, yeah. There is just so much history too, with, with feeding just in general, like with the history with blame, like the maternal deprivation and the, the things it has in common with the history with autism, with refrigerator mothers and, you know, all the, all those things we'd like to avoid and perhaps forget. But, you know, it can, It's a very sensitive topic and it can hit very personally for parents who have received, and I say it received because you. It's not just your child that gets that diagnosis, but you really, like, you receive it and you feel it like a gut feel crunch. When you're that parent that has a child who's diagnosed with one of those things, with failure to thrive or something like that, it feels very personal.
So.
[00:10:57] Speaker C: And it often is very personal.
[00:11:01] Speaker B: Well, yes. Yeah.
[00:11:03] Speaker C: And that, I think that sometimes is what gets left out as we think about just in communication in general. I was thinking about how providers approach something versus how individuals with lived experience, whether they're patients or families and caregivers themselves.
But if you're a provider approaching something, you're like problem solving first and you are as a family too. But there's so much other things that you're thinking about and caring. And we see all of our families and individuals being the medical home and being that communicator in trying to gain that trust as an expert can be really challenging too.
[00:11:42] Speaker B: And it's very, I mean, like, providers are, you know, it's, you know, you're trained to be subjective and, you know, collect the subjective information and then to be objective and, you know, to have all these differences. But for families, it's. It's extremely personal in this experience.
[00:12:01] Speaker C: And so it's, you know, we can't separate the emotion. No, I mean, providers are used to setting emotion aside.
[00:12:10] Speaker B: Well, I mean, to some extent. I mean, they're human as well.
[00:12:14] Speaker C: Yeah, that's true.
[00:12:15] Speaker B: But they also see a lot of people and have to get through their day and then they have their own lives. But for, for families, words definitely Matter for individuals, words definitely matter. And so for us to just always be checking with people as we conduct research and plan studies, I mean, I. I think that the work that we're doing here is extremely important, so to always check back on the meaning of things and to, you know, verify that we're on the right track. I think I'm just very excited about this project and what's going to be coming with the consortium.
[00:12:57] Speaker C: Yeah, I am, too. And I think you saying that just made me think about some of the things that we've talked about in this project in general, which is we want families and patients to be there at the start of research, and that's what this is, as opposed to what we often see, which is them participating as research subjects. And I think if we expand the lens on language and misinterpretation of language and some of those areas that we navigate as we're working on blending perspectives, if you're a parent or an individual taking a survey that was just thrown out to parents without a parent or a caregiver and an individual being at the start of creating that research survey, that could be fraught with misinterpretation or assumptions or preconceived notions, and it really does affect what the end result looks like. And so I think that's also why this is really important work and important at the beginning, and why blending perspectives is intentional work for you and I as we kind of sit at the cross section of bringing these two wider groups together.
But really important work and really excited about it.
[00:14:16] Speaker B: Well, and another thing is that everything's always moving and changing, right?
[00:14:22] Speaker C: Yeah.
[00:14:23] Speaker B: So you have to keep in mind that something developed five, ten, even five years ago, things change rapidly. And that questionnaires and such should also be, I don't know, open to change.
So it's also good for things to be open to modification or change.
[00:14:46] Speaker C: Yeah, I think that's a general rule of thumb.
[00:14:49] Speaker B: Yeah.
[00:14:50] Speaker C: I mean, as we talked about the PFD and ARVID work too. There's going to need to be iterations on that stuff as well, for sure.
So, yeah, definitely. I mean, it will be great to talk to the group. I know that we've got some families that will be sharing their story that are also members of the consortium. And so it would be great to hear from them what this work is means to them. And I know that as we're looking at how does this work continue beyond the current contract term, we're looking at what other perspectives do we need included and how can we broaden and deepen this work. Anything that you want to say about that?
Right.
[00:15:34] Speaker B: I mean, I'd be interested in hearing about more with ethical treatment.
[00:15:42] Speaker C: Yep. That came up a lot.
[00:15:44] Speaker B: Yeah. And trauma informed care.
[00:15:49] Speaker C: That also came up a lot. Yeah. Yeah. So as we dive into this work deeper, we will continue to keep you all updated. But hopefully this little small snippet gave you a little snippet into what we're trying to think about for the future of this work. And we hope that you all have a really great week. I know that there's a lot going on right now and just take care of yourselves and we'll see you next week. Thank you.
Feeding Matters Infant and Child Feeding Questionnaire was developed as an evidence based tool to promote early identification of feeding disorders. Developed by internationally recognized feeding experts, this online questionnaire, available in both English and Spanish, can help you better understand your child's feeding differences and needs. Take it online for free
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