How one physical therapist uses the Infant and Child Feeding Questionnaire to identify a child’s areas of need and how she can help
Feeding challenges never occur in a vacuum. While I’m neither a speech therapist or a feeding therapist, the Infant and Child Feeding Questionnaire® (ICFQ©) from Feeding Matters remains one of my most important assessment tools in my initial encounters with new patients.
The ICFQ was authored in partnership with internationally renowned thought leaders representing multiple disciplines related to feeding. It’s an age-specific tool designed to identify potential feeding concerns and facilitate discussion with all members of the child’s healthcare team – including physical therapists (PT).
Based on the caregivers’ responses to six questions, the ICFQ has been shown to accurately identify and differentiate pediatric feeding disorder (PFD) from picky eating in children 0-4.
Using the feeding questionnaire as a physical therapist
Whenever I meet with a new PT pediatric patient at Texas Children’s Hospital, I spend the first session speaking to the family to determine how we can help the whole child.
For example, I recently was working with a family in the plagiocephaly – head-shaping – clinic at Texas Children’s. When I asked the parent about feeding, she responded that the baby just won’t stay still to eat. That response led me to ask more questions about feeding. I learned the baby has torticollis – tightness of neck muscle that causes the baby to turn to one side. Plus, the baby was dysregulated, which could mean a neurological issue. I asked about reflux, which could be a gastrointestinal issue. I knew how to help in some areas as a PT, and I knew to refer the family to an occupational therapist and a speech pathologist.
I can’t even describe how relieved this parent was. When it came to feeding, everyone else had simply told her to “keep trying.”
While physical therapy focuses on a child’s functional mobility, no movement’s isolated from the rest of a child’s health. Movement takes mental and physical regulation. An infant requires proper nutrition to perform at their highest level. A child without enough calories doesn’t have the necessary energy to make the most progress in physical therapy – or any other therapy, for that matter.
6 feeding questions that help me identify physical therapy patients’ needs
There are six basic questions on the ICFQ that clinicians identify when a child has a feeding issue. As a physical therapist, responses to the questions highlight issues around endurance, function level and the parent’s understanding of the child’s needs.
Following are the six questions and how the responses help me as a physical therapist.
- Does your child let you know when he/she is hungry?
This question gives me insight into how well parents understand their child’s communication cues. Recognizing an infant’s or nonverbal child’s cues allows parents to know when a child is hungry, uncomfortable or tired. This communication is essential to the parent’s ability to do PT exercises at home.
- Do you think your baby/child eats enough?
Often, the responses to this question are cultural. Among the patients I see at Texas Children’s, I find some cultures expect babies and children to eat more than others. This is an opportunity to educate parents about what is typical. For those babies and children not getting enough nutrition, it’s a chance to refer them to specialists who can help.
- Do you have to do anything special to help your baby/child eat?
This question helps me gauge a baby’s stamina level. The baby may be having trouble coordinating breathing with swallowing. This tells me that in physical therapy, I need to work on the baby’s ability to open her chest out wide and back in. The goal is to increase the baby’s endurance to work for 30 minutes of exercise. That causes fatigue at the time, but it actually builds stamina for later.
A baby who doesn’t have the endurance to finish feeding isn’t likely to have the energy to make as much progress in physical therapy. This makes getting more calories into the baby especially relevant for PT.
- Do you have to do anything special to help your baby/child eat?
This question helps me determine when a baby is dysregulated. It means I need to refer to a specialist who can help the family uncover why feeding isn’t typical.
In physical therapy, I’ll determine whether the child needs to work on muscle retraction. This is one of the issues I see often in infants, especially, and sometimes even older children who are having trouble feeding. Retraction takes them away from their midline without being able to find their center again easily. This makes it difficult to eat.
As a physical therapist, I’ll work with the baby on midline rotation. We work on coordinating the movement of opening and closing the arms and chest. The baby’s shoulders should expand back and then be able to come back to center. The baby should be able to find his flexion and make symmetrical motions in the upper and lower body.
Working on the body in this way can improve feeding, supporting the therapy that speech pathologists and occupational therapists are doing as well.
- Does your baby/child let you know when he is full?
When a baby is not recognizing fullness, this indicates there might be a chronic condition. Once full, a baby should cry, turn the head, push away the breast or bottle or spit out milk. But if a baby just keeps eating, this is a cue that the family needs a referral to a specialist.
As a physical therapist, it helps me identify a baby’s level of function.
- Based on the questions above, do you have concerns about your baby/child’s feeding?
Responses to this final question provide an opportunity for education. I’ll know how much information I should give parents on typical development for their child’s age and stage.
It’s also an opportunity to encourage parents who need a referral to go ahead and make that appointment.
As physical therapists, we’re not just looking at the legs and the feet. Treating our patients means treating the whole patient.
Knowing how a child is feeding doesn’t only alert me to a patient’s nutrition needs. It helps me identify other issues a child might be experiencing. Each question in the ICFQ paints a picture of the whole child’s needs.
Karen Crilly, PT, DPT, MAPT, CBIS, is an advanced clinical specialist at Texas Children’s Hospital who has dedicated her professional life to forming a strong background and expertise in the assessment and treatment of infants and children with chronic and complex developmental and/or neuro-motor impairment.
New guidelines for NICU discharge can lead to radical improvements…as long as staff have the means to implement them
In his years as a neonatologist, Vincent C. Smith, MD, MPH, has found anecdotally and in his research that the clinician managing a family’s discharge from neonatal intensive care units (NICU) disproportionately impacts patient outcomes.
Smith, the division chief of newborn medicine at Boston Medical Center, led a study examining how families are prepared for discharge and found significant variability in outcomes. Families with a primary nurse invested in their transition home after NICU discharge fared better. “It wasn’t about gestational age, length of stay or medical complexity. That discharge clinician sets the course,” he says.
Smith wasn’t alone in his findings.
Clinicians across disciplines working with NICU families, as well as parents, find that whether families are ready for the dramatic adjustment of going from a team of clinical support to being on their own is usually left to chance.
Erika Goyer, parent liaison and communications director of National Perinatal Association (NPA), says, “Medical care is siloed. You have a high-risk pregnancy with one team. Once your baby is born and needs intensive care, they’re transferred to the NICU, and you move on to another team. As your baby progresses, you’re supposed to move on to a team at home. What that team comes down to at home is usually just you.”
An estimated 9-13% of newborns in the U.S. require neonatal intensive care for complex medical needs, a number that’s increasing.
To support these families, a cohort of multidisciplinary clinical leaders – including Feeding Matters – and parents came together to standardize NICU discharge. Their hope with the NICU guidelines is to improve families’ experience, reduce stress and help NICU babies access the follow-up care they need to thrive.
Why NICU families need more support
If you speak to NICU families after their first night home, says Smith, what’s true for all of them is that none slept comfortably. Even in the best circumstances, there tends to be a lack of continuity for families. “A lot of families feel abandoned by the NICU. They get their papers and their baby, and they’re joyous. Then they go from bells, whistles and lights, with 50 people around to just them and a baby. And they just had to make do.”
Kristy Love, executive director of NPA and NICU patient advocate, knows firsthand what it’s like to have a child in the NICU. Both of her children were NICU babies. She spent as long as three months in the hospital with one of her kids. What she’s found in her years supporting other parents is that not much has changed since she struggled to transition home with her preemie over 20 years ago. Parents still contact her as much as a year after leaving the NICU to share their struggles. “We have all this support in the NICU during our journey, and then once we go home we’re flying solo,” she says.
She shared her concerns with Smith at a board meeting for the National Perinatal Association, and from there, the NICU discharge guidelines were born.
NICU discharge guidelines explained
The National Perinatal Association spent a year looking at NICU discharge factors like research, protocols, insurance benefits and parents’ experience. The National Perinatal Association looked at NICU discharge factors like research, protocols, insurance benefits and parents’ experience. They worked together with a group of multidisciplinary experts, including Cuyler Romeo MOT, OTR/L, SCFES, IBCLC, director of strategic initiatives at Feeding Matters. Together the content experts finalized the NICU guidelines and submitted them to the Journal of Parentology for peer review.
The guidelines address topics like:
Family and home needs assessment
Transfer and coordination of care
Other important considerations
Smith says there are around 300 guidelines, and no one expects NICUs to adopt all of them at the same time. The hope is that hospital neonatal teams will identify a few of the guidelines particular to their organization and population and then build from there. Over time, they can gradually implement all of the guidelines.
“Many people get overwhelmed when they see the challenges before them because they don’t necessarily have the team, resources or funding. I find everybody can make small changes leading to bigger changes,” says Smith.
Having peer-reviewed guidelines is an important step to improve all families’ experiences. Organizations like the American Academy of Pediatrics and others recommend that hospitals have a transition plan, but it was never formalized until now. “Everybody said you needed to have a plan in place to execute, but they weren’t given any guidance on it,” says Goyer.
Pilot program to put NICU guidelines into practice
Having NICU discharge guidelines is an important first step. Putting it into practice in the field is essential. When the team who wrote the guidelines looked for a NICU as a pilot program for implementing them, they chose Banner-University Medical Center Tucson.
Romeo, who served on the guidelines committee, is a clinician there. Plus, a local community partner, Smooth Way Home, helps families transition home from the NICU.
In January 2022, Romeo says they launched the pilot program by identifying barriers to a smooth transition home. Through crowdsourcing in the unit and close collaboration with the developmental RNs, Nancy Gates and Ashley Lee, they chose three areas of focus:
Processes: Discharge processes and coordination
Providers: Community provider readiness to accept infants into community-based care
Parents: Parent and caregiver education and advocacy to support optimal care and development at home
The team found that families may not receive developmental care support once they were discharged home. It was unclear if families referred to the Arizona Early Intervention Program (AzIEP) were receiving care. Not all children discharged from the NICU qualify for early intervention services despite their difficult beginnings. If they did qualify, getting that first appointment proved challenging. “Before piloting the guidelines, our NICU team would refer families to AzIEP and then have no way to know if they received care,” says Romeo.
A long standing barrier to accessing services after discharge was knowledge sharing. Nancy and Ashley reported that early intervention agencies often were unable to access the infants’ medical records. Without this information it was difficult for families to qualify for service.
To address these issues, says Romeo, the developmental RNs are leading the way in investigating process improvements for information transition while working closely with Smooth Way Home as a liaison for a warm handoff into the EI system.
It’s a multi-year pilot program that we hope will grow into a larger program if we are able to secure funding. Our families deserve to be well prepared so they can finally enjoy their baby at home.
Romeo says the guidelines lead to better outcomes, but funding remains the most significant barrier. “This work is done while the clinicians continue to fulfill their typical job demands. Nancy and Ashley do not have time allocated for this project, but they feel it is vital to the infant’s health and development so the work continues.”
Everyone involved says improving the continuum of care for NICU babies and their families requires tremendous work. But every level of improvement matters to the families who benefit from it. As Goyer says, “This is all about making sure families aren’t alone and have the support and skills they need from the clinicians and community around them.”
Visit NICU to Home for more information about the NICU guidelines.
Feeding Matters has been a strategic partner in creating and implementing the guidelines, together with NPA. For more information about how we help families of children with pediatric feeding disorder, click here.
This blog post is published as part of a paid partnership between Feeding Matters and Reckitt Mead Johnson Nutrition. Learn more about our corporate partnership program and ethical standards for collaboration.
There are many opinions on using human milk or infant formula when it comes to feeding your baby. Most of the focus goes into what is being fed to your child, but less emphasis is placed on the safety of how feedings are prepared. Unless you are directly breastfeeding your child, you need to consider food safety when preparing infant bottles or tube feedings.
This focus on food safety has been front and center over the last couple of years since infant formula recalls have been in the news. These recalls occurred due to microorganism contamination concerns in a manufacturing facility. Food safety matters and is why liquid ready-to-feed or concentrated formulas undergo a heat treatment that sterilizes the product. Powder formulas are not sterilized, which poses an additional risk for contamination when incorrectly handled and prepared. The Food and Drug Administration (FDA) is the regulatory and enforcement authority over the manufacturing and distributing of infant and pediatric formulas. It is important to consider food safety when preparing both infant formula (< 12 months old) and pediatric formulas (> 12 months old) being fed via a bottle or a feeding tube.
For families preparing pediatric feedings at home, it is important to remember these safety tips:
- properly wash your hands
- clean/sanitize feeding equipment and preparation space
- store prepared feedings appropriately
- follow the recipe from your provider
Practicing good hand washing techniques helps to diminish the risk of transmitting germs. Make sure that hands are washed for a full 20 seconds with soap and water. Proper handwashing is the #1 method of preventing the spread of germs for your child.
When bottles or pump parts are being used, cleaning them regularly is essential. It is also recommended to sterilize these components in the microwave or dishwasher. Any child that has complex medical conditions has increased susceptibility to infection. Steps to clean and sterilize equipment are crucial for these children’s overall health.
Any time you mix up formula – those feedings are good to use for 24 hours. Make sure that you label and note of when feedings are mixed and store in the refrigerator until it is time for the feeding. This includes recipes of human milk fortified with formula or formula only recipes. When warming infant feedings, never microwave. Options for warming include a bottle warmer or placing bottle in a warm water bath. When leaving the house with infant feedings, transport in a cooler with ice pack to help ensure the milk/water is kept cold to decrease risk of microbial growth.
When preparing your child’s feedings, follow the recipe on the can or given by your health care provider and check the expiration data prior to preparing. Some children need special feeding recipes to meet their growth goals. Use the scoop in the formula container or measuring utensil provided by your health care provider. Use a safe water source for mixing feedings, this can be tap water or nursery water.
Feeding your child seems like the most basic parenting task, but it can be challenging and complicated for many families. Remembering some of these guidelines of food safety can help ensure that you are doing the best for your child and keeping them safe. Click here to download and print handout from the Center for Disease Control and Prevention (CDC) our HOW TO PREPARE (cdc.gov)
1. Green Corkins, K., & Shurley, T. (2016). What’s in the Bottle? A Review of Infant Formulas. Nutrition in Clinical Practice, 31(6), 723–729. https://doi.org/10.1177/0884533616669362
2. Turck, D. (2012). Safety Aspects in Preparation and Handling of Infant Food. Annals of Nutrition and Metabolism, 60(3), 211–214. https://doi.org/10.1159/000338215
3. Green Corkins, K., & Shurley, T. (2016). What’s in the Bottle? A Review of Infant Formulas. Nutrition in Clinical Practice, 31(6), 723–729. https://doi.org/10.1177/0884533616669362
4. CDC. (2018, May 7). Infant Formula Preparation and Storage. Centers for Disease Control and Prevention. https://www.cdc.gov/nutrition/infantandtoddlernutrition/formula-feeding/infant-formula-preparation-and-storage.html Accessed August 8th, 2023.
Anna Busenburg, RD, CSP, LD, CLC has been a registered dietitian for the past 11 years and specializes in pediatric nutrition and specifically neonatal nutrition, working in a level IV NICU at Cincinnati Children’s Hospital Medical Center. She has covered inpatient NICU and outpatient NICU follow-up clinic patients.
She has undertaken many projects over the years to help improve patient care and cultivate a culture to support nutrition education. She has been involved in developing a process for utilizing donor breast milk in a 25-bed NICU and she was involved with leading the launch of a breast milk/formula scanning system in a 100-bed NICU. Anna is a certified specialist in pediatrics and has completed the pediatric weight management course. She obtained her Certified Lactation Counselor credential in 2019.
She authored a chapter of the book The Nutrition Communications Guide from AND published in 2020 and published an article in the Pediatric Nutrition Practice Group on RDs Involvement in Infant Feeding Preparation Rooms published in 2019. She currently serves on multiple committees for the Pediatric Nutrition Practice Group and has held various positions within AND on the state and local level. She is also a member of the American Society of Parenteral and Enteral Nutrition. When not busy with work, Anna spends her extra time and energy with her family, which includes her husband, 3 boys, and a Chihuahua.
On a vacation to Monterey, Mexico, I sat at a fancy restaurant and friends presented me with a plate of worms. Since I am a curious eater, and it was a delicacy, I cautiously took a bite.
At that moment, I couldn’t help but think of my feeding therapy clients. After decades as a pediatric occupational therapist, I wondered, “If somebody made you eat this, held your hands down while they put it in your mouth, or made you eat three bites of those worms before you could have your regular dinner, would that be fair?”
Understanding how children feel during mealtime is the pediatric feeding with empathy that I try to share in my teachings with parents and feeding therapists. Empathizing with why children struggle to eat or drink is key to setting clients up for a lifetime of better feeding. “We need to look deeper to find a compassionate lens. The foundation for supporting all areas of feeding therapy has to be fully cemented in an understanding of empathy, connection, safety, motivation, enjoyment and brain science.”
In a presentation at the International PFD Conference, I outlined eight mindset shifts to consider for a more empathetic approach to PFD feeding therapy.
Communicate the empathy circle
Empathy is the ability to understand and share the feelings of another. It’s the ability to sense another’s emotion and imagine walking in their shoes. For children and their parents, pediatric feeding with empathy means seeing food as they see it and reflecting to them that they’ve been understood.
Communicating what might be going on for a parent or the child is called the empathy circle. We need to find empathy for the child and what they might be going through. And we need to help parents have empathy for their child and understand what might be going on for them.
Look beyond just calories during mealtime
Nourishing children needs to include more than focusing on calories. Having a child feel like a celebrated part of mealtime is essential to skill mastery. Food is nourishment, but it’s also a means of communication and socialization. It can be about giving and receiving love, celebration and family time. This is why mealtime is an important opportunity to develop strong parent-and-child relationships. We need to ensure we’re also nourishing little souls with pleasant, safe company.
Shifting adult and child roles during meals
The role of adults at mealtime is to decide the menu and provide a safe environment for learning. When children come to the table, it’s to be nourished and have energy for the day. That means some of the foods offered at that mealtime must be foods the child knows and will comfortably eat while they’re learning about other foods that the family and siblings are eating.
Many of us have approached feeding therapy as if it’s our job to “get food into kids.” However, it’s the child’s job to decide what and if they’re going to put food in their mouths, and our job is to offer a variety of foods to allow for opportunity and learning about foods so the child can discover what he LOVES.
Rethink exposure to new foods
In the past, exposure to new foods meant getting a child to put it in their mouth. In some cases, a child gets pushed past their sensory safety zone. Exposure done with pressure can decrease the enjoyment of eating, along with any benefits of that exposure.
Asking a child with PFD to try a mouthful may be way too big of an ask. A little taste, lick, touch or even seeing others enjoy a food can be considered an “exposure.” Instead of thinking of “exposure” where adults often ask (or demand) that children interact with that food in a certain way, can we think of “opportunity” where the child gets to explore the food and decide if or when ready to try it on their own.
Work with the whole family
Both parents and children bring their experiences to the table. A trusted connection with parents from infancy supports a child’s ability to self-regulate. Feeding therapists must be sure to support parents’ success. This means asking assessment questions that reflect what’s going on with a child and parent. It also means including parents in planning and solutions with questions like: Of all the things we did today or talked about today, what would you like to try this week?
Consider why a child says no
A child says no to food for a reason, such as:
- They don’t feel well
- The sensory challenge is too great
- They have a difficult motor response to that food
- They have poor regulation
- They are too worried
Consider food refusal as communication. It invites us to be curious about what’s going on and how we can make that child feel more ready and safe for this mealtime interaction.
Shift from food tolerance to enjoyment
Tolerance is the capacity to endure pain or hardship. But enjoyment means satisfaction, pleasure and gratification. Food constitutes not only the taste but also sensory aspects, socialization, experience and satiation. Many of us have used the word “tolerance” in our feeding goals. But if a child doesn’t like that food, why would we settle for “tolerance” when we could aim for “enjoyment?”
Pay attention to communication cues
Forcing a child to eat when the adult is the more powerful figure in the relationship could mean missing cues of a child’s sense of safety, worries and need to protect themselves. It’s easy to push into their stress and worry zone and then call food refusal a behavior problem. This can unintentionally teach a child to ignore their body and sensory cues.
When we allow children to tune in to the wisdom of their own bodies, we’re supporting safety. Children who experience safety with us as parents and therapists are better able to regulate themselves. Pediatric feeding with empathy means seeing them, hearing them, valuing them and understanding them, to climb into their skin and walk around in it.
Ultimately, eating is a learned behavior. How parents and children interact over mealtimes matters. This is why parents and feeding therapists must do what they can to create positive memories around eating, food and mealtimes.
View Marsha’s International Pediatric Feeding Disorder Conference Session: Shifting our Focus in Pediatric Feeding Towards a Compassionate Lens here
Marsha Dunn Klein has spent over five decades working in feeding therapy as an occupational therapist, author, inventor and co-founder of the Get Permission Institute. This article is based on a presentation from the 2023 Feeding Matters International Conference.
Hello! I’m Michelle, and I am thrilled to share where my inspiration for becoming a feeding therapist came from and introduce my newest research project. I have a full-circle story of how I ended up working in the field of pediatric feeding. I am so passionate about working with these clients and their families.
When I was a junior in high school, a friend asked if I could help her babysit for a family in my neighborhood. I became this child’s habilitation and respite provider and began attending their therapy sessions. I loved all of them, but was particularly intrigued by his feeding therapy sessions. I started helping with his home program, introducing new foods, playing with new foods, and working on feeding skills at home. I knew that was the space that I wanted to be in when I grew up, and I worked hard to graduate with my doctorate in occupational therapy in 2020.
During my capstone in my OT program, I began a small research study, studying the interventions I was observing in feeding therapy. Unfortunately, in the middle of this experience, the COVID-19 pandemic hit, and I was unable to get my study off the ground.
I have always been a question-asker and answer-seeker, looking to research and clinicians with more experience for advice and support for how to best help my clients and their families. Since graduate school, I have been interested in returning to my research question and helping feeding therapists provide the most evidence-based interventions to support our clients and their families.
As a therapist, I get my evidence and best-practice by learning from families, colleagues, and reading the most current research. However, with pediatric feeding disorder as a new diagnosis and feeding therapy as an emerging practice area, research on feeding therapy interventions is scarce. This is the gap I’m trying to address as I begin my journey into conducting research.
- Formulate a question. What are common questions that you find yourself asking or that you are asked by families, other practitioners, or from people that you are mentoring? For me, I was often asking why are these the interventions that I keep coming back to. I ask myself daily how the strategies that I choose to use are helping my clients find success at mealtimes. I have asked the same questions of all of my mentors and frequently find caregivers or other health care providers asking the purpose of certain strategies that I bring to the table.
- What population/setting do you need? Could you answer your question using the data from your documentation? Do you need to study your clients or their caregivers or other clinicians? Where would you find data to support your research? Would you need to be in an outpatient clinic, a hospital or acute care setting, home health, school, etc.?
- Current project you can help with or start something new: Are there current research projects that are addressing your question or a question you’re interested in, or do you need to start your own? Start with a literature review to look for what’s been researched and where the gaps are. Contact organizations or communities that may be doing research (ie. Feeding Matters, Universities, etc.). Use social media to find others who are like-minded and connect with them. Don’t be afraid to send a DM or email to a researcher or clinician who you relate to who may be interested in helping with your idea.
- Resources: If you’ll be conducting research with human subjects, you will need an IRB. The best way to get an IRB is to connect with a university. Doctorate programs in the therapy fields are becoming more common and often have benefits for community research partners including access to student research teams, access to university libraries and libraries who can help with research design, and professors who may have similar interests or projects that you can model yours off of.
- Develop a plan. Through your literature search, determine which type of research fits your question and resources best. Will you be conducting qualitative or quantitative data? Do you have the resources and ability to pursue a randomized control trial, or would a pilot study or case study fit better? Take time to find the right research type for you. Use templates for research protocols, plans, and write-ups from the beginning that match your study type, especially if this is the first study you’re leading. During your literature review, look for strategies in their research protocols that you can model your procedures off of and save these ideas together to reference as you work on yours.
I clearly remember the day a doctor’s news changed my life. After months of chasing my baby around with a bottle to eat an ounce at a time, I learned Alex has a rare chromosome disorder.
The neurologist enthusiastically delivered the devastating news, charmed that he was the first to solve the puzzle of why Alex’s development was delayed. Even as a registered nurse, I found his explanation confusing. My shock meant I couldn’t have processed the information even if it had been simple.
How NOT to support families with pediatric feeding disorder
As a healthcare professional, that day was one of many where I learned how not to support a family of children with pediatric feeding disorder (PFD). The news should have come from a genetic counselor, my husband should have been there, and it should have been shared with compassion.
The journey before learning about Alex’s disorder was a struggle as well. Although he was my first, I knew it wasn’t normal for a newborn to eat only an ounce at a time. What he took in, he spat up. His growth was slow, and at 9 months, he was neither sitting up nor crawling.
Our pediatrician told us to give it time, that I was a nervous new mom and that Alex was slow to grow because it was a difficult pregnancy, and he would catch-up. It wasn’t until we saw a different provider at 9 months that we were connected to a neurologist, geneticist and Early Intervention (EI) services. This too, was a lesson in how not to support families of children with PFD.
Armed with a diagnosis and therapy services, we hoped to help Alex eat more and get the calories he needed to grow and develop. Instead, we were told to try harder to feed him and to schedule weekly weigh-ins. A feeding tube was held over our heads like a threat, as if inserting one would signal our failure as parents.
By the time Alex was 18 months and weighing only 16 pounds, I nearly begged for a G-tube. When he finally got one and started gaining weight, I couldn’t help but wonder why we were encouraged to try so hard. Why didn’t he have the nutrition he needed during such a critical developmental time?
Alex’s genetic diagnosis and the PFD that came with it became a springboard for my career. I had a choice to struggle with the question, “Why me?” or do something that would make this odyssey less painful for others.
I chose the latter.
Leading research to support families of children with PFD
After completing a master’s degree in nursing education and then a doctorate in nursing, today I research PFD and how it affects the entire family unit. I’m dedicated to fixing what we went through for others.
At the beginning of Alex’s diagnosis 15 years ago, there wasn’t common terminology among physicians and clinicians. This was a focus for my dissertation because it is a big barrier to building research and supporting families of children with PFD.
It’s why I have a big affinity for Feeding Matters, who did the work to get a PFD ICD-10 diagnosis.
One of the things I’ve done with our Feeding Flock Team is to develop several parent questionnaires about feeding behavior, skill, family management of feeding, and parent and family impact of feeding. For example, on a project with researchers and clinicians at Children’s Hospital of Atlanta, we are developing an assessment of the impact of intense food allergy regiments on caregivers and households.
Our goal is to provide data to clinicians and parents to help determine whether a food allergy intervention eases the psychosocial impact that food allergy has on everyday life for parents and families. For example, new oral immunotherapy treatments for food allergies require children to take a certain amount of allergenic food and have activity restrictions every day at a specific time. Is the cost-benefit worth it? Ultimately, the child still needs to avoid the food, but should have less severe reactions if exposed to small amounts unintentionally. Are there quality of life improvements for the family? We only know if we measure this.
I’ve interviewed parents as I go through the process of developing measurement tools for PFD, and I’ve heard their stories. Witnessing what others go through and being in the position to do something about it is what gives our family’s struggle meaning.
Because of our experience with feeding therapies, I learned to ask more questions. And I learned that research for PFD must be patient-centered. Only with patients who have experienced PFD and their families at the helm can research lead to better journeys and improved outcomes for the whole family.
The pitfalls of unhelpful and misleading social media advice for clinicians and caregivers and how to avoid them
Whether you’re a clinician or a caregiver, unhelpful and inaccurate content is a common pitfall for anyone following feeding therapy accounts on social media. Here’s an example that speech therapist Bri Miluk, MS, MS, CCC-SLP, CLC, owner of Pediatric Feeding Therapy, sees often.
A therapist with a few years of experience shares a Reel highlighting the “dangers” of using a sippy cup. With a flashy video and a viral song, the account owner warns the audience of all the negative ways a sippy cup can affect speech, feeding, swallowing and sleep. Then, instead of sippy cups, the post recommends a special straw or open cup. The author shares a link to where you can buy it and the hashtag “#ad” as well.
Not only is the information, at best, misleading, and, at worst, entirely inaccurate, but it also violates Federal Trade Commision (FTC) rules for advertising.
Miluk, who is pursuing a PhD in communication and information sciences through the University of Alabama, explains, “This kind of content uses fear-mongering to convince people to avoid something based on baseless claims.” Pointing out that there’s no evidence to show that a child using a sippy cup is going to have sleep, airway, feeding or speech difficulties, she goes on to say, “A sippy cup uses similar oral motor patterns as sucking on a pacifier, thumb or bottle, but we know that frequency and duration matter. A child doesn’t have a sippy cup in their mouth all day long.”
Social media is a powerful tool for education and community among caregivers and clinicians alike. But the onus is on the user to ensure the information obtained there is accurate and helpful.
Healthcare misinformation mixed with fear-mongering on social media makes a recipe for disaster
Richard Noel, MD, a pediatric gastroenterologist at Duke Health, has treated hundreds of patients with pediatric feeding disorder (PFD) and other pediatric GI issues. One problem he hears from caregivers gathering PFD information from social media is that content typically features only one perspective. “On social media, you only see the numerator but never see the denominator. You’re not told about when an approach fails. They always generally talk about their successes.”
When information is shared as a general recommendation, it can be particularly challenging. “Pediatric feeding disorder can have many different forms and severities. What works for one person may not work for another,” says Dr. Noel.
Knowing that social media can be full of inaccurate information and even fear-mongering has led clinicians like Miluk to spend time creating social media educational content. Miluk has built up an audience of over 24K on Instagram with content to educate clinicians about feeding therapy. Caregivers also follow her for tips, and Miluk is especially driven to dispel myths for both audiences.
Here’s a great example of how Miluk does this:https://www.instagram.com/p/CuQO6cCOd-S/
Clinicians need to gauge content on misleading social media advice
Even clinicians and students pursuing a therapy degree can fall prey to misinformation on social media. Miluk started sharing social media content, primarily on Instagram, after seeing other speech therapists promote inaccurate or misleading content. She started in 2020 by sharing evidence-based content on pediatric feeding. That evolved to trying to support clinicians and caregivers to better understand dark marketing and how misinformation is shared online. According to Business Review at Berkeley, dark marketing is highly targeted advertising that “causes the audience to think about the product more subtly.”
TikTok posts and Instagram Reels from influencers promoting a product take dark marketing to a new level. “Some of these sources are selling a method or a booklet, and you’re getting advertising disguised as a documentary,” warns Dr. Noel.
Because dark marketing is so pervasive on social media, Miluk teaches her students in university courses and clinicians online how to spot it.
“The better understanding we have of how to be informed consumers ultimately leads to better patient care,” she says.
Judging the accuracy of information on social media
When using social media to view healthcare information, one tool Miluk recommends considering is the aptly-named CRAAP test.
CRAAPstands for currency, relevancy, authority, accuracy and purpose. Miluk explains each letter of the acronym as follows:
Currency: Is the information timely or is it outdated?
Relevancy: Is the information relevant to you?
Authority: Who is the source of the information?
Accuracy: Is this information supported by scientific evidence?
Purpose: What is the reason this information exists? Is it to inform? Is it to sell? Is it to teach? Is it to entertain? Is it to persuade?
Best practices for clinicians using social media for pediatric feeding disorder information
Miluk and Dr. Noel recommend the following ways to access informative PFD content on social media without being misled.Just because it’s a common refrain doesn’t make it gospel
One of Miluk’s favorite podcasts, Duped by Dr. Michelle Mazur and Maggie Patterson, has a quote she repeats often: Just because you hear something frequently doesn’t mean it’s true.
“Because of cognitive biases, when we see something repeatedly, it’s natural for our brains to believe it to be true. In reality, that doesn’t mean truthfulness,” says Miluk.Make your intentions clear
For clinicians who promote products on social media, you need to disclose any affiliations in the post. This can’t be simply including #ad. You must clearly state that you may receive a commission on qualifying purchases. “It’s something that I wish would be normalized. An affiliation is not something to be embarrassed about. People have a right to know if you have a potential bias for something when you’re earning a profit, no matter how small,” says Miluk.
Clear disclosure on posts is required by social media channels themselves, as well as the Federal Trade Commission.Unfollow toxic accounts
For those clinicians and caregivers who actively share on social media, one of the biggest challenges is the ability to hide behind a screen. This can create divisiveness and even be shame-inducing. “If you put something on a public forum, you should expect public replies and even public criticism, but that doesn’t mean we should be disrespectful,” Miluk says.
Miluk recommends treating your social media like your digital home. “If I wouldn’t allow someone to walk through my door and talk to me like that. Then they’re not welcome here, either.”
Advice for parents and caregivers
Caregivers should be wary of social media before adopting a new method or following advice to support children with PFD. Dr. Noel recommends the following tips:Use your therapy provider as a sounding board
When you find new health information, bring it to your therapy provider before investing time or money into a specific method, book or video series. “You see something new on social media that looks amazing and promises to help 10 out of 10 kids with a feeding disorder. If you run it by your therapy provider, they might point out it’s not new. It works for some, but it doesn’t work for all. That’s how you get better, more realistic information for your child,” he says.Seek information and support from advocacy organizations
Dr. Noel is a fan of and a critical professional leader for advocacy organizations like Feeding Matters. He says, as a physician, there are many questions he can’t answer because he doesn’t live with the disorder his patients’ families confront every day. Having a peer referral source is crucial. “These advocacy organizations are incredibly valuable to provide for patients’ needs that are way beyond what I do in medicine,” he says.
Technology today is moving faster than your finger can drag down to refresh. Access to this information overload is only as beneficial as the receiver’s level of skepticism. Miluk’s most important advice for using social media to find support for PFD or any other health issue is to slow down. “You have to slow down your thinking and be willing to appraise the information before feeding education on social media can be effective.”
Click here to read a blogby Miluk on why she recommends clinicians attend Feeding Matter’s annual PFD conference.
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Additionally, download and print the new guide to Thickening Breast Milk In the Healthcare Setting which includes product information, mixing instructions and recipes for when thickening breast milk is recommended for swallowing difficulties, or for reducing spit-ups, in the healthcare setting.
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Have questions or want to learn more? Visit our website to contact us, to request samples or to schedule a webinar in-service!
In honor of occupational therapy month this April, a leader in addressing pediatric feeding disorder shares what OTs can do to improve care for children
By Kate Barlow, OTD, OTR/L, IMH-E
Associate professor of OT at AIC
Early in my occupational therapy career, I worked with a girl who appeared to be in pain every time she ate. She couldn’t speak or communicate well, but it was clear to me that something was wrong.
After checking with her mom, I expressed my concerns to her pediatrician, who instructed me to continue offering milk. It was then that I encouraged the mother to find a developmental pediatrician.
Through evaluation and my conversation with the developmental pediatrician, the girl got a G-tube. She gained weight. Her whole demeanor changed once she was no longer uncomfortable. It was the first time I felt the power of advocating for one of my clients.
As occupational therapists, we always make the best estimates based on our experience and clinical observations.
This was an important lesson for me that I need to trust my gut and be there for my clients. If we as clinicians don’t push for those kids and families, they may not get the care they need.
I’ve been advocating for children with feeding issues ever since.
Feeding is among the main reasons kids are referred to an occupational therapist (OT). And yet, as an OT, I see that the work we do for kids’ feeding issues is an area that needs improvement. With more awareness, education and system-wide assessment tools, all children with feeding issues can access better care.
Universal screening for feeding issues would identify more children who need support earlier
Feeding issues in young children are so common that I believe all children should be screened for feeding concerns. Similarly to school-wide hearing and vision testing, feeding screening should occur in early childhood education centers and schools. We as OTs should advocate for universal screening for feeding issues.
Conservative evaluations estimate that PFD affects more than 1 in 37 children under the age of five in the United States each year. That rate is even higher for children with developmental delays.
A recent study indicates that feeding problems could indicate a developmental delay. Results showed that compared with children who never experienced feeding problems, children who experienced high feeding problems at one or two time points were more than twice as likely to have a delay on all Ages and Stages Questionnaire (ASQ) domains. Children who experienced high feeding problems at all three-time points were four or more times as likely to have a delay on all ASQ domains.
OTs and SLPs need a comprehensive screening tool
With the help of a Feeding Matters grant, Dr. Paula Rabaey and I completed a research study, “Investigation of Assessment Tools in the Area of Pediatric Feeding Evaluation: A Mixed Methods Study.” We surveyed 263 pediatric occupational therapists and 182 speech and language pathologists who identified as pediatric feeding therapists. Results showed that OTs and SLPs use various assessment tools. Non-standardized assessment tools were most commonly reported in assessing all four domains of pediatric feeding disorder: medical, nutrition, feeding skill, and psychosocial.
The results indicated a clear need for a standardized assessment tool covering all pediatric feeding disorder domains. The research will be published in the American Journal of Occupational Therapy this summer.
Clinicians need to continue constantly learning
Today’s occupational therapy programs include more pediatric feeding, eating, and swallowing education. In order for occupational therapists to stay up to date on pediatric feeding issues, all feeding therapists need to participate in continuing education courses.
The International PFD Conference from Feeding Matters is an excellent way to level up your pediatric feeding skills knowledge. The conference features the latest research and methods from leaders in the field and attracts clinicians of all levels of experience. The virtual conference is available live Thursday, April 13 through Friday, April 14, and then virtually until Wednesday, May 31.
Feeding therapy needs to be culturally sensitive
We as clinicians do a great job of educating parents, and it is important to be culturally sensitive when working with families. I recently received the infant mental health endorsement – IMH-E – emphasizing the importance of culturally sensitive, relationship-focused practice.
It’s important to consider a family’s cultural norms, home life and income level when recommending what foods children should or shouldn’t eat and how they should approach mealtimes.
We need to ask open-ended questions to access information we might not have even considered and so that families don’t feel judged by any insinuations.
For parents, struggling to feed a child is extremely challenging. It’s our job as clinicians to do everything we can to make that a little easier.
Kate Barlow, OTD, OTR/L, IMH-E® is an associate professor at American International College. She’s also the current ambassador for the CDC’s Learn the Signs. Act Early. program for Massachusetts. She has over 20 years of clinical experience that includes public school practice, early intervention, a pediatric hospital-based outpatient clinic and management. Her areas of clinical expertise are early identification of delays and pediatric feeding.
Of all the clinical appointments for 15-year-old Maya Roberto over the years, one stands out. Instead of catatonically going through the motions of her echocardiogram, Maya interacted with her cardiologist, even asking questions. Her mother, Dr. Anka Roberto, recalls how shocked she and her doctor were as Maya actively engaged with her cardiologist for the first time.
Noting that his patient, who was five years old at the time, was much more lively, the physician asked what had changed. Roberto, DNP, MPH, APRN, PMHNP-BC told him, she was in trauma therapy and just had an Eye Movement Desensitization and Reprocessing (EMDR) session to help her work through her medical trauma.
The doctor had never heard of it, and was pleasantly surprised with its efficacy.
Today, Roberto uses EMDR to help heal her pediatric patients from trauma as a private practice clinician.
Roberto’s years as a NICU nurse and mother of a child with complex congenital heart defects prepared her for a career in trauma-informed care as an advanced practice nurse. She’s seen personally and professionally how much treating a patient’s trauma as part of the continuum of care can make a difference.
Since birth, Maya’s journey has included multiple open heart surgeries, years of feeding therapy and an NG tube. Roberto knows firsthand how traumatic medical and feeding interventions can have a lasting impact. For children with pediatric feeding disorder (PFD), considering and treating medical trauma can go a long way toward healing children.
Trauma-informed care offers a comprehensive approach that considers emotional and mental well-being to help children and their families affected by PFD. Understanding the impact of trauma on the body and how to navigate it allows families to access an effective care modality.
Trauma varies for everyone. One major incident or many minor insults can cause trauma. Two people experiencing the same situation can respond entirely differently. One can move forward, while the other carries a lasting physical and emotional imprint. “When I think about trauma, it’s more of an adversity,” says Roberto. “We could have a big trauma, or we can have little things that add up to carry the same weight of a big trauma.”
What matters is how trauma affects the brain and body.
The CDC-Kaiser Permanente Adverse Childhood Experiences (ACE) study is one of the most comprehensive investigations into the lasting effects of childhood trauma. The longitudinal study showed that early adversity could significantly impact future physical, social and emotional health – as well as lead to early mortality rates.
The pandemic further raised awareness of how trauma can affect mental and physical health.
How the body reacts to trauma
Trauma can profoundly affect the body. Potentially traumatic experiences trigger the body’s “fight or flight” response. In this state, the heart rate increases, and respiration speeds up as the sympathetic nervous system prepares to defend against danger.
The disruption of hormones and enzymes caused by the experience can lead to difficulty regulating temperature, breathing and digestion. The gastric emptying system turns off. It causes constipation, loss of appetite, and/or motility (muscles in the wall of the gut) issues.
“It’s like the fire alarm in the house is going off,” says Roberto. When this happens, the parasympathetic system, sometimes called the “rest and digest” system, stops working.
These acute responses can make an imprint that has long-term effects. Families of children with PFD can mitigate the impact of trauma with support and care. “Trauma leaves a mark, but it’s up to us to find those who can help us get out of being stuck in the triggered cycle,” says Roberto
Understanding trauma-informed care for children with PFDTrauma-informed care is an approach to support those who have had adverse experiences during their lifetime. Unlike traditional forms of care, which may not be sensitive to traumatic experiences, trauma-informed care recognizes the impact of trauma on an individual’s behavior, thoughts and emotions. The goal is to create a safe space for healing and recovery.
Trauma-informed care involves four key components, known as the “Four R’s:
- Realizing how trauma can affect an individual
- Recognizing signs an individual has experienced trauma
- Responding effectively with appropriate interventions
- Resisting re-traumatization by promoting safety, trust, empowerment and collaboration
Understanding these components is essential to effectively support children with PFD, who may be dealing with the long-term effects of traumatic experiences.
Trauma can disrupt eating patterns by causing fear or anxiety around food, leading to refusal or avoidance behaviors. This compounds feeding issues children with PFD already experience.
For children with PFD, trauma-informed care offers a safe way to explore emotions while helping them build positive relationships around eating.
How to navigate the impact of feeding trauma
The effects of trauma on children with PFD can be challenging. What’s traumatic to one child may barely register for another. And the traumatic experience often isn’t even something the child can recall.
This is why it’s crucial to understand each child’s experience, recognize triggers and provide emotional support. Therapeutic interventions such as EMDR can help children reprocess past traumas without needing to talk about them. In her practice, Roberto uses a sand tray and play therapy to help children process previous experiences and feelings.
“They may not have verbal recall and a story to tell, but they remember feeling a certain way,” she says.
A child’s visit to a doctor’s office, for example, can trigger a panic attack because they don’t want to lie on the table, says Roberto. “It’s really because of this unprocessed adversity, which for many people may come from a place of not having control.”
With EMDR, she helps children uncouple the emotional tenacity from that memory.
Benefits of trauma-informed care for children with PFD
Trauma-informed care provides a safe space for families to build trust and better understand how to support their children. Trauma-informed care allows children to explore the experiences that triggered their trauma and develop improved emotional regulation skills. It can also lead to an improved appetite and a willingness to try new foods.
When children get emotional support, they can better articulate their needs to their parents and healthcare team. A therapist can help a child develop practical communication skills and problem-solving techniques. With practice and guidance, these tools allow children facing medical trauma to cope more effectively in difficult situations.
3 ways to support children with feeding trauma
Finding the right resources for trauma-informed care can be challenging, but more resources are developing with a heightened awareness of trauma’s impact.
Focus on the whole family
Roberto says supporting the entire family is key to helping children heal from traumatic events. “Families are like a tree, so if one limb is struggling, the others will start to wither as well.”
Give kids time
Children with medical complications react to stress in the same instinctual way as anyone who senses physical danger. Anyone who’s had to submit their child to medical testing has likely witnessed the fight, flight or freeze response. Roberto recommends slowing down in those moments. “Listen to your kids and give them the time to get there. It’s not about our agenda, as parents or as clinicians. It needs to be about the child’s agenda and providing them with the support they need in the moment.”
Get outside support
Talk to your child’s doctor or pediatrician about what type of care is available in your area and look for mental health providers who specialize in this trauma-informed therapy.
Online resources can also be helpful when seeking out trauma-informed care. The National Child Traumatic Stress Network offers comprehensive information geared toward helping families affected by traumatic events.
Finally, it’s important to remember that although trauma can be difficult, it can be an opportunity to move forward and break the trigger cycle. Roberto says, “We all have our experiences, but we don’t have to let them define us or limit our future possibilities.”
By understanding the trauma children with PFD can experience and working through it with compassion, children can regain control over their lives and reach their full potential.
Anka Roberto, DNP, MPH, APRN, PMHNP-BC an assistant professor at the University of North Carolina Wilmington and has authored book chapters and numerous publications on trauma and resilience. In her private practice, Holistic Healing, PLLC, she provides functional psychiatry care and EMDR therapy to target and reprocess negative life experiences across the lifespan.
Roberto is the keynote speaker at the 10th Annual International PFD Conference on April 13-14. Click here to learn more and register.