[00:00:01] Speaker A: 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
[email protected] that's questionnaire Feeding Matters. Org or type ICFQ in your search bar.
[00:00:31] Speaker B: Presented by females with hosts Jacqueline Peterson and Dr. Haley Estrom.
Feeding Does Matter.
[00:00:44] Speaker A: Hi everyone, welcome. I'm Jacqueline Peterson, CEO of Feeding Matters, welcoming you to Feeding Does Matter, a podcast brought to you by Feeding Matters. Haley, how are you doing today?
[00:00:56] Speaker C: I'm doing pretty well, thank you very much. How are you?
[00:01:00] Speaker A: I am doing well. I'm excited to talk to our guests today and dive into the psychosocial domain. It's a huge domain and such a big impact in feeding and so I think people are going to get a lot out of it today.
[00:01:13] Speaker C: Yeah, me too. And I'm really excited to be getting into this in the It's Not Picky Eating series with clinical psychologist Dr. William Sharps.
Will, would you like to tell us a little bit about your background?
[00:01:29] Speaker B: Sure. As you noted, I'm a clinical psychologist by training, but have the privilege of working with a multidisciplinary team in my professional life. And that includes all the domains of pfd, medical, nutrition and skill. And I've been doing this for about 20 years, so treated probably by this point. A few thousand children have come through my clinical program at some point in time. And really at this point I think I've seen the gambit of what you can expect with atypical restricted eating.
[00:02:11] Speaker C: And I feel like we've been really fortunate to be able to work with you and get to know you a little better. And so glad that you're able to share this talk with us today and to be able to share more about the psychosocial domain.
[00:02:28] Speaker B: Sure. So, learning objectives for this talk Identify the four diagnostic features associated with psychosocial dysfunction, describe the impact on the child and the caregiver in terms of when there's psychosocial dysfunction present and then a possible intersection with other domains of pfd.
All right, so the PFD diagnostic criteria identifies four potential areas of psychosocial dysfunction. These are active or passive avoidant behaviors by the child, inadvertent caregiver management strategies of the child's feeding and or nutritional needs by the caregiver, disruption of social functioning within the feeding context, and disruption of caregiver child relationship associated with feeding.
[00:03:17] Speaker C: So, Kim, for about the active or passive behaviors, is that why it's important to know all the domains, because the behavior they might be communicating might be active or passive?
[00:03:34] Speaker B: Yeah, I mean, I think the first thing to be thinking about when a child is not eating and rejecting food is they are communicating something. I mean, behaviors are about communication. And we want to make sure that we're looking at those behaviors in ruling out what may be contributing to those. And we'll talk about that a little bit later on in terms of what are potential options. But most of the time when we think about behavior, behavior is something that we learn. It's usually functional. And in the case of pfd, when refusal behaviors are present, they tend to be functioning as a means to escape something or get away from something that's unpleasant or painful. Right.
And so what we want to make sure is that the child isn't in pain. And we're ruling out there's any type of underlying organic issue that's leading them to reject food.
Regardless of the underlying cause.
When you do have disruptive behavior, they tend to be either active or passive.
And active really refers to that. You can see it. It's actively avoiding the food, such as pushing the food away. Tantrums. We've seen kids have aggression, in some cases elopement if they can get away from the table if they're older. But there's also passive refusal. And the PFD definition distinguishes between active and passive. And these are times when the child may be refusing to self feed, might be pursing their lips if food is being presented to them. But in both cases, we know that without intervention, these behaviors can strengthen over time. Because what kids tend to learn is that these behaviors are effective in avoiding or restricting food intake. They're going to keep doing them. And our job as a team is to make sure that efforts to reintroduce food to children do so in a way that minimizes any more potential trauma or avoidant behavior, but also reestablishes that food is something that doesn't hurt them.
[00:05:28] Speaker A: So it's all kind of learning.
[00:05:30] Speaker C: Yeah.
[00:05:31] Speaker B: In terms of this is interesting. So we ended up changing the word. In the original PFD paper, I believe they use the word inappropriate management strategies or something along those lines. What is the exact same they use.
[00:05:45] Speaker A: The word is inappropriate. And I think that's really harsh on some families when reading that diagnostic criteria. So I hear you say inadvertent, and I think that's a good shift in terms of sharing this diagnosis with families, because it's.
[00:05:59] Speaker B: So we did make the shift to inadvertent management strategies. And really one reason to make that shift is, you know, food refusal is really confusing. When I talk to friends, family and they say, what do you do? And I say, I work with kids who don't eat.
You normally get a puzzled look like, why wouldn't anybody want to eat? Like, you know, And I think that's because we all have a relationship with food. And for most of us it's a positive relationship with food. People look forward to eating. Most people do.
And so when caregivers are faced with a child who's rejecting food and not eating, it can be confusing. And you'll try a lot of different things to try to get your child to have a better relationship with food. Right. And so the definition itself notes four possible ways that you might respond as a caregiver that might inadvertently strengthen or cause further psychosocial dysfunction.
One option here is only offering preferred food or CC meals altogether.
So if you know, that's for the child who's selective and eats something, but you know, in order to avoid their child rejecting other foods, they might only give them foods they know they'll eat. And if they're not eating anything, they might just say, I'm done, you know, I'm not going to try to feed my child anymore because it gets them highly distressed. And maybe use an alternative means to meet their needs like a feeding tube or formula through oral supplementation. We also know that when your child's not eating, it's common to excessively prompt coaxial. Really attend to that refusal behavior because you're trying to get your child to eat food. And so you might try to encourage them repeatedly because you want your child to eat.
I don't like the term force feeding. I think it connotes an intention to cause harm. But I do. Some parents often say I had to really persist with trying to get my child to eat because they were so resistant to eating. And they might call that force feeding, but you know, that idea of trying to persist and establish that your child makes contact with food.
And then lastly, the definition notes that it could involve feeding a child who possesses the skills, that is your self feeding, that is you're feeding the child yourself. We call that non self feeding a child who knows how to self feed. So we've had clients who we know they know how to use utensils, but they wait for their parents to actually feed them during that meal.
[00:08:22] Speaker A: Okay, yeah. And so any of these would condone that dysfunction within that psychosocial domain. Consistent with a PhD diagnosis.
[00:08:30] Speaker B: Exactly. And I think this is really to denote that feeding is a dyad. It's. There's a child on one side and there's the parent on the other, and there's.
[00:08:41] Speaker C: There's still learning and going on still. There's still learning happening in that situation.
[00:08:48] Speaker B: Exactly. There's also learning on the side of the parent, the parents learning what works and what doesn't work. Right.
Yeah.
And we also know that it. When you. When you have chronic food refusal and a disruptive relationship with your parent and your child in the meal, it can cause broader disruption social functioning.
We know that parents often report, you know, as. As social creatures, we usually come together and use food as a time to celebrate. So we might have food at parties, events, birthdays. And if you think about what can I bring? Is usually something somebody will say when we're getting together.
So kids with PFD and their families, they're not going to be participating in social events with food the same way it's not going to be going to restaurants is not oftentimes reported as a highly desirable activity for kids, especially with that psychosocial dysfunction.
It also impacts their relationship with their peers, their caregivers, and other family members. When food is not a time to come together and bond, it can be really stressful for those families. And we'll talk a little bit about that a little later on.
But we've also know that it can restrict what they're participating in, including attending school where you gotta eat, traveling where you gotta be more flexible with what you eat, and extracurricular activities that may require a certain level of fuel, which is what food is ultimately is fuel to participate in those events.
[00:10:12] Speaker A: Yeah. And what does that kind of lead to?
[00:10:14] Speaker B: Yeah, well, I mean, I think ultimately it leads to a disruption in the caregiver child relationship. We know that chronic and persistent feeding concerns erodes an already fragile caregiver child relationship in many cases. So a lot of kids with PFD we know have complex medical and developmental conditions that have led to or contributed to the feeding problem. And it's already stressful enough being a parent with, you know, I have two kids of my own. Having young kids is not necessarily the easiest thing. And you roll onto that. One of your major jobs as a caregiver is to feed your child.
And we know that parents report that meals are not a time to come together and bond. When you have an individual with PFD and psychosocial dysfunction. They're reporting that these meals are significantly stressful, high levels of distress.
And I think caregivers sometimes report that they leave meals drained. The interactions were, you know, they have negative emotions for the fact they weren't able to feed their child and they feel like they've let themselves down in terms of their major role as a caregiver. And then you finally get disengagement from conducting meals because they're so stressful and aversive. They're just not times. They're not something you want to go and do as a caregiver.
[00:11:33] Speaker A: Yeah, that's a lot of what we hear from families.
And I think an extremely isolating part of it is if you're doing a lot of those strategies, those inadvertent strategies to make sure feeding happens, in whatever way it happens, it becomes your soul. You are the sole feeder in the family, which is even more isolating. And I think that that just exasperates some of that significant stress and negative emotions and disengagement. And you're right. And that they're feeling that way about the meal themselves too.
[00:12:10] Speaker B: And there. And there's not a lot of good advice out there for what to do. Right. And so, no, no, not practical, like.
[00:12:17] Speaker A: What do I do in this moment? Advice. I think there's a lot of more theoretical advice.
[00:12:24] Speaker C: Well, and what I hear from families a lot in interviews is that they'll receive often mixed advice from providers or they'll receive maybe misguided advice from other distant like extended family or friends. And it will end up being this big mix of confusing advice, you know, well intentioned things.
And it ends up being kind of a mess. And they do end up very isolated and they'll be trying to follow the advice perhaps of like that one provider who is within a feeding program or their outpatient program. And they'll feel very alone in trying to do that. Like they might be the only one that's ambassador from the feeding program, trying to, you know, stay the course. And it can be very difficult in doing so.
[00:13:24] Speaker A: Yeah.
[00:13:26] Speaker C: To have that support.
[00:13:27] Speaker B: Yeah, definitely.
And so, you know, talking about the impact of this really nice transition term, the impact of caregivers in the family, you know, once again, we oftentimes view meals as a time to come together and bond as a family. But when you have that significant psychosocial dysfunction, they're once again stressful, chaotic and unpleasant.
They're unpleasant because the child is either fearful or of the food or hasn't had experience with food. And in many Points views food as dangerous because of their medical or past history with eating, but it also leads to really impacting the diet of others. Because we've had families who have said things like, oh, we can't eat that, because if we bring that in the house and my child sees it, it causes a meltdown. Or, you know, just the sight or smell of that food can cause the child to shut down for the rest of the meal. So we do know that pfd, when psychosocial dysfunction is present, that it can start to limit the diet or shape the diet of other family members.
[00:14:37] Speaker A: Yeah, I think that's a really big point because so many times we're sharing, like, feeding is complex. Feeding is complex. And not only is it complex within the individual, but within the feeding, the parent, child dyad and then the whole family context, it's incredibly complex. And it has this, like, erosion effect. I think when stress and trauma is present.
[00:15:00] Speaker B: Yeah. And I think that's one reason that when caregivers are approaching treatment and assessment and treatment, it's so important that the caregiver and the family is part of the treatment itself.
You know, we often recommend, if you're going to see a treatment provider, how are they involving you? And they should be involving you from the first appointment in some type of overall plan.
[00:15:23] Speaker A: Mm, very true.
[00:15:25] Speaker C: But also, how can we make it to where, like, the whole. The whole family can be integrated in some way to where it won't have that erosion effect on the entire family? How can we reinforce it?
[00:15:40] Speaker A: Do you mean even with siblings and not just like your primary feeding parent?
[00:15:46] Speaker C: Right. Not just that one caregiver, but how can it be integrated into the whole family experience so that when the program intensive part, or, you know, just so that when it transitions back into the whole family experience and they go for the long haul, how can it be more seamless?
[00:16:05] Speaker B: Yeah, what we do is we do family meals. We say, hey, can you. Can you bring the siblings in? Can you bring. Can dad and mom come? And we basically, we want to make sure that whatever you're doing in treatment sticks. Right. So ultimately, if you're going to some type of psychosocial treatment provider, the goal is not to show proof of concept in clinic, but actually so that it transitions to home and the family can adopt it. So, you know, it should involve some type of effort to make sure that the family unit is supported and can adopt the treatment approach.
[00:16:40] Speaker C: That's great.
[00:16:40] Speaker A: Yeah. Because life is so different outside of any sort of treatment environment. Often, I know this is shifting gears A little bit from this conversation, but so many of the families that come to us at Feeding Matters and the families of the consortium even, also have a child with the diagnosis of arfig. Can you share a little bit more about that?
[00:17:02] Speaker B: Yeah. You know, ARFID predates PFD by a few years. How many years? It doesn't really matter. Maybe like four or five years.
[00:17:11] Speaker A: The formal, the formal distance is about five or six years.
[00:17:14] Speaker B: Yeah, yeah. But it doesn't really, you know, ARFID replaced and extended what used to be feeding disorders of infancy in early childhood. So I guess that would be the og, the original feeding disorder. Right. And then ARFID came along and what they did with ARFID when they, when the DSM went and expanded it, extended and expanded it. I'll talk about the expansion first. They went from. It used to be that in order to get a diagnosis of pediatric feeding disorder from the DSM standpoint, which is, by the way, the DSM is the psychiatric manual. It's a psychiatric. It's a counterpart to pfd, but you used to have to be, I believe, the six years or younger in order to get a pediatric feeding disorder of infancy in early childhood and the DSM 4. And so one of the things they did when they went to ARFID is they got rid of any age requirements. So they basically said you can be diagnosed at, you know, 4 years old and you could be diagnosed at 40 years old, so that your disruptive relationship with food could emerge at any point in your life. And we can talk, you know, chat a little bit about what we think about that lifespan approach. The other thing they did, they. The extension they did was they. It used to be that you could only get a diagnosis of pediatric feeding disorder of infancy early childhood if you were underweight. So, like, yeah, you. That was the only diagnostic criteria. So I actually like ARFID that it got away from weight being the lone diagnostic criteria. So now you have basically all the nutrition dysfunction you have in pfd. That is, you could be underweight, you could have a narrow diet that leads to nutritional insufficiencies. You could be formula dependent either by tube or oral, or you could have significant psychosocial dysfunction. And ARFID recognizes those four domains.
So it's got the same nutritional manifestations. It also obviously has an overlap with PFD in terms of the psychosocial dysfunction. But what PFD you did, and you know, I really learned this through my work with Feeding Matters, is that what PFD does is it brings to light the fact that some kids might not eat because they're not medically cleared to eat or they have significant skill concerns that doesn't make it safe to eat, such as aspiration.
And so, you know, I think when you get to the only remaining area of dysfunction is psychosocial, I think ARFID and PFD are very aligned in terms of the diagnostic criteria. But I do think pfd, you know, being framed from an international classification of function, disability and health does have more of that multidisciplinary framework that, that recognizes that medical and skill based concerns need to be rolled out before you start a, any type of psychosocial intervention.
[00:19:54] Speaker A: Yeah. And it's often has been really confusing to families receiving both either not knowing what PFD is and they know what ARFID is, or not knowing what ARFID is and they know what PFD is.
And this is something that we worked on internally at Feeding Matters in partnership with you and this group right here. But maybe talk a little bit about what we tried to do with the consensus and we'll continue to do with that consensus to bring clarity to this.
[00:20:22] Speaker B: Yeah, yeah. As a clinical psychologist, one of the most interesting thing about ARFID when it came out as a diagnostic entity was apparently there was a whole host of patients that have been accessing eating disorders, eating disorders treatment centers for a long time. And a lot of the DSM work that went into developing ARFID was being driven by that eating disorders group. And they were really interested in having a diagnostic home for kids who, who restricted their food intake. Usually these were older kids and when I say older, 10, 11, 12, 13, 14, maybe even, you know, adolescents who were not eating for a variety of reasons, but they weren't the same as what I'm going to call our younger PFD kids who, you know, when you come to my clinic, you're oftentimes coming because you were born premature or you had some type of other congenital or acquired respiratory, cardiac, GI concern that led you to associate food with painful, some pain or discomfort. Right. What they were seeing in the eating disorders world was they were seeing kids that were older who may have already been vulnerable for developing a feeding or eating disorder, but have an event, either, you know, some type of choking event or the emergence of significant anxiety. And they really have this precipitous decline in their intake of food. And what we did as a project, sort of kind of loop this all around to answer your question is we brought together the people who had been studying that older cohort and then the people who had been studying the younger cohort. So the PFD side of ARFID and the eating disorder side of arfid. And we've come together for upcoming. We have our second annual series of talks that are meant to drive thought leadership about what the relationship between ARFID and PFD is.
[00:22:11] Speaker A: Yeah. And I think the lifespan approach is a really interesting one because clearly the diagnostic criteria enables them to overlap.
But with pediatric feeding disorder happening in pediatrics and infancy and early childhood then allows for that psychosocial piece, the piece of the consistent poor experiences around meals that just is exacerbated in adulthood. And so I think what I've learned in bringing the groups together has been just the ability to think about it from a different lens and think about it in that lifespan approach and really thinking about how do the two diagnoses work together.
And it'll be interesting to see where this all goes.
[00:22:57] Speaker B: Yeah, kids grow up. And so we don't know how many of those kids with PFD that are being diagnosed with ARFID later on actually might have had PFD as well. I think there's a lot of unanswered questions.
[00:23:09] Speaker A: Yeah, for sure. We're going to share a case or two with us. Do you have a case that you want to share with us around the psychosocial complexity?
[00:23:15] Speaker B: Yeah, I'll share the top case and then we can chat about whether any. So I was on the fence, by the way, about psychosocial dysfunction and ARFID in general. What I meant by that is you can measure weight, you can measure nutritional deficiencies, you can measure where you're getting your food from. But psychosocial dysfunction or psychosocial is such a ambiguous term in some ways. And it wasn't until I had this child with food allergy, and it was a child who, 10 years old, he didn't eat outside the home. He'd only eat foods that his mother prepared and they got to watch her prepare. But he went to school and he didn't have weight concerns. So he ate enough food. He didn't have nutritional deficiencies because he ate enough variety of food and he didn't have a feeding tube or needed any type of oral form of supplementation. He just had a very rigid way of eating because he had an anaphylactic event where he had almost died related to having being exposed to that. And so this really brings up this question between what's the relationship between a medical condition and when it goes over to being a psychosocial dysfunction. And so you should restrict your intake of food when you have food allergies to make sure you don't make yourself sick and or possibly, you know, get exposed to something that could kill you. But he was restricting to the degree that it went beyond the allergens. Right? He was, he was not eating at school. He was coming home and binging when he got home because he was so hungry because he had spent eight hours not eating at school. Yeah. And so I think that's a really nice example of like when medicine should weigh in, like, tell me what foods I should not feed. But then the psychosocial piece, it needs to be treated by a behavioral or, you know, an expert with a psychologist or so forth with expertise, and how to help that family overcome that additional rigidity or avoidance that can result from a medical condition. There's also examples here about kids with cerebral palsy who have underlying skill deficits where the mismatch is between I want my kid to eat table texture foods, but in reality, the skill and the stamina to eat an adequate volume is just not there. And so the point of this is that psychosocial complexity should be informed by the other domains when it's present.
[00:25:34] Speaker A: Yep, yep, that's very well said. That makes a lot of sense. Well, thank you.
[00:25:39] Speaker C: Yeah, yeah.
[00:25:41] Speaker B: So in conclusion, psychosocial dysfunction and PFD negatively impacts the child, the caregiver, and the broader family unit.
The complexity of managing the psychosocial dysfunction is increased when there's intersection with other PFD domains. That is you have to be aware of those other domains when you're managing a pfd. And a co occurring diagnosis of ARFID should be considered when other domains are effectively managed and psychosocial is the only thing that left over to manage.
And that's it.
[00:26:11] Speaker A: Yeah. Thanks, Will. I know we have one question that we're asking all of our guests.
So, Haley, I don't know if you want to ask a question.
[00:26:21] Speaker C: What are the biggest challenges you see in making pediatric feeding research more inclusive of family perspectives, and how do you think we can overcome them?
[00:26:32] Speaker B: I think involving families in the research such as this project is really important. I think oftentimes, you know, researchers get interested and think they're interested because they see it, but they're not actually then going back and reengaging the family to say, is this accurate? Is this, is this how your experience looking back important? Yeah, yeah, yeah. So the whole idea, and it's not because scientists are or researchers are not thinking about the families, they're thinking about questions and data. Right. And that's what scientists do. And sometimes engaging humans can be a little bit messier than numbers and collecting measures. So I think that's something we need to get researchers more comfortable with.
[00:27:14] Speaker A: Yeah, that's a really good point. It's just truly talking different languages.
It's a complete mismatch in terms of how you're looking at a problem.
[00:27:24] Speaker B: Yeah, definitely.
[00:27:27] Speaker A: Well, this has been wonderful. Will, we really thank you for participating in the project for the consortium in general, but also being here with us during this It's Not Picky Eating series.
[00:27:38] Speaker B: Great.
[00:27:39] Speaker A: So thank you. Thank you, everybody.
[00:27:43] Speaker B: Cool. Thanks.
[00:27:45] Speaker C: Thank you.
