post

A case for giving: Why gifts to Feeding Matters matter

Published by Feeding Matters on Nov 27, 2023

Feeding Matters is the only organization where education, advocacy and support for pediatric feeding disorder (PFD) is our passion and purpose. In this season of nonprofit giving, one supporter explains why her family chooses Feeding Matters for their charitable giving.

From the day Kirbi Lamb’s first son, Finn, was born, she knew something was wrong with feeding. “He was just totally not interested in eating, literally from the moment of birth,” she says.

She reached out for support from the hospital providers, but everyone told her it wasn’t unusual. On the day of discharge, Lamb finally met a lactation consultant who handed her a nipple shield and formula.

Lamb was sent home with a baby who refused to eat and never did manage to breastfeed. She pumped, but her baby only took a little bit from a bottle. Milk dribbled down the sides of his mouth, and he vomited nightly.

Lamb and her son were at the pediatrician’s office once or twice a week. There, she also felt like she wasn’t being heard. Her baby was still steadily growing, thanks to the Lamb family’s sheer determination to feed him. Everyone told her spitting up and vomiting was normal.

It took 10 months until they finally got a referral for a swallow study. They discovered he was aspirating so badly that his liquids had to be as thick as honey. “That was the day I broke when they told me my child had been aspirating all this time. I was holding it all together until that day,” she says.

Since then, Finn, who’s now 7, has undergone feeding therapy, medical testing, laryngeal cleft surgery and an intensive feeding program. He never got an official diagnosis to explain the exact issues. What was clear is that from birth, it was hard to swallow, and gastrointestinal issues made eating more uncomfortable. Today, he eats about 20 different foods.

One of the most challenging parts of navigating their son’s feeding issues was not knowing what was wrong and not being believed. When Lamb’s second son was born with similar issues, the family knew how to help him from the start.

Since becoming a parent of a child with PFD, Lamb has been dedicated to supporting the education and advocacy work of Feeding Matters. “It’s the only organization where pediatric feeding disorder is their passion and purpose,” she says.

PFD impacts 1 in 37 children, making it more prevalent than autism and cerebral palsy.

Still, even providers need the education Feeding Matters offers, says Lamb. “Providers still don’t know what they need to know about feeding disorders. Everyone thinks it’s picky eating.”

The Lamb family are generous donors to Feeding Matters. She says, “I want other people who are going through it to know what to look out for and that there are others out there going through this.”

How Feeding Matters uses charitable gifts to support families and raise awareness about Pediatric Feeding Disorder

Feeding Matters is a 501c3 nonprofit organization that operates on grants and charitable gifts from generous donors. We have the highest possible rating on Charity Navigator of 4 stars.

Charitable gifts to Feeding Matters are used in the following ways.

Family financial assistance program:
Raising a child with PFD is expensive. That’s why we offer grants to help support families in need. Grants are used for formulas, care and medical costs.

In 2023, 4 families were awarded $2,500 each.

Advocacy:
We advocate for policy changes and increased awareness of pediatric feeding disorder on a national and international level. We were the catalyst for the name and code for PFD, which is the foundation for all future system changes.

Research:
A lack of longitudinal, evidence-based data and the diverse nature of PFD are barriers to understanding the individualized needs of children with the disorder. Together with our PFD Alliance, we strive to identify, fund and facilitate research and clinical studies that address these issues. We aim to move the field from using practice-based evidence to relying on evidence-based practice.

Education:
We provide crucial resources and support to families navigating the challenges of PFD. We facilitate professional educational initiatives for clinicians, ensuring healthcare providers are equipped with evidence-based knowledge and tools. XX clinicians joined our International PFD Conference in April.

Whether you are a long-time supporter or are giving for the first time, thank you for helping us improve the lives of children with pediatric feeding disorder. We are grateful for donations of all sizes.

Donations made to us are generally tax-deductible in accordance with applicable laws. Click here to donate.

Championing change: One feeding specialist’s advice for improving NICU feeding

Published by Ramya Kumar, M.S., CCC-SLP, BCS-S, CNT, IBCLC, NTMTC on

By Ramya Kumar, NICU Developmental Coordinator at Abrazo Arrowhead Hospital; Speech-Language Pathologist at Arizona NICU Follow-Up Specialists

As a NICU feeding specialist, advocating for even a small change in practice can help decrease long-term feeding challenges for babies with a NICU stay. How feeding and breathing tubes are positioned and taped, supporting breastfeeding and the kind of pacifiers and bottles babies used all can impact NICU babies’ future feeding.

Simply put, priming NICU babies appropriately leads to more feeding success upon discharge. But any feeding specialist who’s worked in a NICU can relate to the roadblocks to improving feeding practices.

Consider the following scenario. Research shows that using a slow and consistent bottle nipple flow rate supports a baby’s feeding quality and eventual intake quantity. However, many well-meaning NICU staff members use a faster flow because they assume slower flows tire a baby out or make them work harder. This often creates a more stressful feeding experience for the baby and it can lead to inconsistency in practice.

In addition, many NICUs stock disposable nipples that come from formula companies. The flow tends to be inconsistent, and they’re not a product that families can access once babies are discharged.

While staying up to date with the latest clinical research is important and a crucial step in change management, simply citing that information to colleagues isn’t likely to help you make changes. What I found in my time working in NICUs and mentoring NICU teams is that creating a culture change takes time. It needs to be implemented in small steps that are systematic and strategic.

For example, with nipple flow practices in the NICU, here is what I’ve found works:

  1. If you are in a NICU that stocks disposable nipples, try choosing one brand based on flow rate. While we know that there is still inconsistency between each disposable nipple used, there is some predictability when choosing one brand instead of multiple options.

  2. Choose a small focus group of patients to test a research-based product. For example, try a new nipple and bottle system with the more vulnerable babies in the NICU, typically those who are born under 30 weeks. If you can show feeding improvement with this demographic, you may get more buy-in to gradually expand the process to other NICU babies and medical diagnoses.

Many logistical challenges make it hard for feeding therapists to change how feeding has always been done in some NICUs. Staffing is a common problem in every area of healthcare, including the NICU. And parents of babies who spend early weeks or even months in the NICU cannot always be present to assist with feeding as discharge nears.

The following are two challenges parents and NICU teams have to work together to overcome.

  1. Increase parent confidence and competence with feeding at discharge. Most parents spend a lot of time in the NICU with their newborn in the beginning when the baby is in an acute stage. As time passes, they have to go back to work or to care for other kids. However, these later stages of the NICU stay are crucial moments of learning and skill development –– for the baby and for the parents. Building parental confidence and competence in the early days and toward discharge should be an integral step in the process of transitioning from hospital to home.

  2. Focus on quality together with quantity. NICU staff are understandably focused on how much food a baby eats and how well they are growing. There is a big emphasis on numbers and percentages of intake rather than how engaged the baby is during feeding. Focusing more on quality by letting the baby guide the feeding pace more, even when it means a temporary drop in quantity, can improve feeding in the long run.

baby in an incubator with a nurse taking notes on a clipboard beside him or her

Planning and implementing changes in your NICU

Over the years, I’ve mentored many new clinicians motivated to implement all the research and practices they learn into their NICU. They’re disappointed to find that the existing culture can be hard to change. The key is to focus on slow growth and not to take resistance personally.

Following are eight tips to slowly implement changes that can improve care for NICU babies and their families.

  1. Learn the lay of the land and build trust. No one wants a new boss or employee to make changes immediately. Take your time and learn the culture you’re entering. Get to know your coworkers and make sure they know and trust you before you suggest changes. Enter from a space of learning and collaborating to optimize outcomes.

  2. Know your why. Many changes that would improve the experience for NICU babies take more effort and time – like slower or more frequent feeding. Knowing why these changes matter are necessary for explaining your position. Do your homework and bring research to support any recommendations you make.

  3. Identify NICU feeding champions. Find three clinicians open to helping you improve the NICU: a neonatologist, a neonatal nurse practitioner and someone from the nursing staff. This way, you have a team to support your goals, as well as perspectives from all the stakeholders. Always make sure you have representation from the night shift and day shift.

  4. Start small. Slowly pick low-hanging fruit when deciding how to make changes in your NICU. You can build on that initial success later.

  5. Pay attention to logistics. Anytime you introduce a new system, you’re changing and often adding workflow steps for the bedside staff. Find ways to help alleviate that work so that it doesn’t become the focus of negativity.

  6. Roll up your sleeves and help. Don’t be afraid to win over team trust by jumping in and helping with areas other than feeding. Changing diapers or holding a baby are some of the best times to talk about feeding. You’re sharing knowledge and supporting the baby and overall team in ways that set you up for a culture of collaboration.

  7. Track qualitative and quantitative improvement. NICU teams track the volume of feedings and some are also tracking readiness and quality of feeding sessions. Compare new data to the old data to see if the changes you implement are effective. I always recommended looking at 24-48 hours of data, rather than just a few feedings.

  8. Set babies up for success at home. Involving the parents, especially near discharge, can ensure continuity at home. For example, if a baby’s parents want to use a particular feeding system at home, have them bring it to the NICU to try it out.

Implementing changes in the NICU takes time, patience and resilience. Leading change in an environment that has long-standing practices is not simple, but the ability to impact long-term care and developmental outcomes is worthwhile. NICU feeding specialists have the power to shape children’s future, one mealtime at a time.

Ramya Kumar, M.S., CCC-SLP, BCS-S, CNT, IBCLC, NTMTC, specializes in infant and pediatric feeding development. She works with clinicians across the country and internationally through workshops and direct mentorship to improve NICU care practices.

Thoughts from the Airport after the ASHA Convention

Published by Jaclyn Pederson, MHI on Nov 20, 2023

This week took my breath away. Something I’m working on in my own leadership journey is taking the time to celebrate and acknowledge success as sometimes I’m moving too fast to do so. And this week while attending the ASHA Convention, Igniting Innovation, I was able to witness first-hand the growth of our PFD movement…and it blew me away. So during the convention, and now with all of you, I am celebrating the moment.

I’ve been around Feeding Matters for a long time, but not always in this position. I was here when our founder, Shannon Goldwater, first presented the idea to create a stand-alone name and identity for the broad spectrum of feeding difficulties in 2015 to our PFD Alliance (previously Medical Professional Council). I was around to coordinate the flights and hotels to make sure leaders were there for the consensus meeting in Phoenix in 2016, around in 2017 and 2018 to help “herd cats” to keep the PFD Consensus publication moving, and around to plan and listen to the community to build a strategy for our PFD identity movement in 2019 and beyond. Even though I’ve been involved in the planning and execution of all of this, I don’t think I fully comprehended the impact that it would create years down the road, like now in 2023. Some dreams are so big they feel like a hazy image instead of a clear picture.

Some dreams are so big they feel like a hazy image instead of a clear picture.

But this week that image became a little clearer. I was in awe as I saw the representation of SLPs specializing in pediatric feeding overwhelm any room they entered, I was proud as I saw discussions of what emerging research is happening in PFD (and it’s a lot), I was curious as I listened in on brainstorming of what is needed to better support feeding specialists. I heard ideas of what we can be doing better and what we are doing well. And overall, I felt overwhelmed at the sheer growth and the familiar way that PFD is now discussed at a non-feeding specific convention. PFD as a name didn’t exist until 6 years ago. Now, it is commonly used amongst professionals from many different disciplines, backgrounds, and geographies including SLPs, OTs, MDs, and many more. I am in awe. It was the stuff of dreams.

If this week is any indication of the many other important disciplines involved in PFD and the direction this entire community, not just our SLP friends, is headed with our PFD movement, we have an unbelievable journey ahead.

Overwhelmed with gratitude and in awe with excitement– that’s how I’d describe the week. Thank you to all of you I saw and to those I didn’t get a chance to say hello to. And thank you for your passion and partnership to turn these big, hazy dreams into reality.

Walking the Path of PFD

Published by Jaclyn Pederson, MHI on Oct 19, 2023

October holds a special place in my heart. Professionally, it’s the birthdate of the pediatric feeding disorder (PFD) diagnosis in the US (PFD turned two this year!). And personally, it’s the birth month of my two young sons.

While Feeding Matters was the birthplace of PFD, we do not own it. It’s amazing to see how the professional and parent community have taken it and run. And while we do not own PFD, we do serve as PFD’s champions, advocates, and storytellers. We feel an immense responsibility to walk alongside any family during their feeding journey while also improving the system to make that walk a little easier.

Research confirms what families tell us: they tend to find a way to navigate life during and after the initial throes of feeding challenges in the early months of their child’s life. They are shown to hold it together, so to speak, through formula switches, bottle changes, seemingly endless appointments, tubes or no tubes, medications, and more. But something happens around their child’s first birthday. Whether it’s an anxiety filled smash cake session or figuring out how to reduce bottle feeds, a sobering reality often hits families on their PFD journey at this typically joyous milestone.

And this is something I’m keeping in mind as my son George turns one later this month. After 10 years of fighting tirelessly for PFD families, I find myself asking the same questions I’ve listened to other families ask. This last year with my sweet George, my family has navigated an atypical feeding experience. After many bottle and formula switches, tears, and anxiety as we worked through George’s reactions, we introduced solids timidly, with only some success. Now we’re coming up on George’s first birthday.

I don’t know what’s next in November or the months to follow for us. I do know the various paths I’ve seen families go down. I am grateful that we were fortunate to have many resources and early intervention for George. But, I’m keeping every Feeding Matters family on my mind as I walk this road, especially those who don’t have the resources I was fortunate to have. It’s a responsibility I carry for my son, for your family, and for all the professionals who work to give our kids the best care they can.

While every PFD journey is different, I hold this research close to me and will take comfort that I walk on the same path as so many other parents who have come before me and hope it helps me forge a new one for those who come after me.

All the best,

Jaclyn Pederson, MHI
Feeding Matters CEO


References

Estrem, H., Knafl, K., Thompson, K., & Thoyre, S. (2023, June). Revealing the Complexity of Family Response to Infant Feeding Challenges. Podium presentation at the 16th International Family Nursing Conference, Dublin, Ireland 2023.

Thoyre, S., Knafl, K., Estrem, H., Thompson, K., Cromeens, M. G., & Park, J. (2023, June). How parents of developmentally at-risk infants define “successful feeding” at 1, 6, and 12 months of age. Podium presentation at the 16th International Family Nursing Conference, Dublin, Ireland 2023.

Estrem, H. H., Thoyre, S. M., Knafl, K. A., Pados, B. F., & Van Riper, M. (2018). “It’s a long-term process”: Description of daily family life when a child has a feeding disorder. Journal of Pediatric Health Care, 32(4), 340-347. https://doi.org/10.1016/j.pedhc.2017.12.002

Calm Confidence

Published by Courtney Bliss, MS, RDN on Sep 28, 2023

Hi! I’m Courtney Bliss, a pediatric dietitian and a Feeding Matters board member. Last week I was able to participate as a board liaison in Feeding Matters’ PFD Alliance executive council meeting where we discussed all of the amazing work of our staff and volunteers. I’m very excited for you all to see the work we have underway and our next International Pediatric Feeding Disorder Conference (Save the dates now! April 24 – 26, 2024).

In our meeting, we spent time discussing the recent meeting between the avoidant restrictive food intake disorder (ARFID)/eating disorder (ED) world and our pediatric feeding disorder (PFD) crew.

In my day to day life, I work as a pediatric dietitian running my own practice supporting families from birth to 21 years old. I have the privilege of supporting individuals with a wide range of conditions, including ARFID, EDs, and PFD. I am lucky to be able to help families with all of these conditions – ARFID, EDs, and PFD. Something that stands out to me working with all three populations is the different approach many providers have when it comes to advocacy.

In my experience and opinion, the PFD world embodies a certain scrappy spirit. When you have to fight for validity for years (especially prior to the official PFD diagnosis in 2019) – there is an unparalleled intensity as we have had to justify our space in the world, to be seen and heard. When you step into the ED world (where ARFID mostly lives) there is a completely different energy. They aren’t trying to prove themselves. The ED provider community is decades into their advocacy journey, and they approach collaboration and advocacy with a more calm confidence. For me, this stark contrast helps me realize how the crossover and confusion of ARFID and PFD continues. Both worlds haven’t been talking with one another.

That calm confidence is something I look forward to our community stepping into for this next season. I think of it as a collective deep breath, a pause before we push again. The consensus paper published in 2019, the diagnosis code(s) released in 2021, our numerous research projects, and the recent consensus meeting with the ED population all underscore one undeniable truth: we are here, and our work matters and profoundly impacts children and families. As we continue to increase awareness in our communities, let’s approach those with a zen-like confidence that comes from being seen. Your work is valid. Your family’s experience is valid.

This will certainly help us reach more families in need of support, inspire more providers to get involved, and accomplish our mission of creating a better system of care for children with PFD.

Thank you for your unwavering dedication to Feeding Matters and for being an integral part of our journey. Together, we are making a tangible difference in the lives of countless children and their families.

Best,

Courtney Bliss, MS, RDN
Founder and CEO – Feeding Bliss
Feeding Matters Board Vice-Chair

Breastfeeding for babies in the NICU and beyond

Published by Joy Browne, PhD, PCNS, IMH-E on Sep 13, 2023

A comprehensive guide for navigating baby feeding for infants in the NICU By Joy Browne, PhD, PCNS, IMH-E Clinical Professor of Pediatrics at the University of Colorado School of Medicine Most expecting parents have the best intentions to breastfeed new babies. The science is clear that breast milk has the most benefits for a baby’s health even beyond the infant years. Mothers, too, reap emotional, mental and physical benefits from breastfeeding. But breastfeeding can be harder than it seems. The challenges are even greater for parents with babies in the neonatal intensive care unit (NICU) for any number of reasons, such as medical complications, a mother’s delayed milk production or a mother’s lack of access to the baby. That’s not to say breastfeeding babies in the NICU is impossible. With support, it certainly can be possible. And even those babies who can’t breastfeed immediately benefit from colostrum expressed at birth and skin-to-skin contact that lays a foundation for breastfeeding.

Can I breastfeed if my baby is in the NICU?

The journey of nurturing your newborn is more complex when your baby requires specialized care. One common concern is whether you can breastfeed a baby in the NICU. The answer is a resounding yes. Breastfeeding has many benefits, especially for premature or medically fragile infants. NICUs will often actively encourage and support breastfeeding, recognizing its vital role in promoting bonding, immune system development and overall growth. While it might require extra patience and support from both you and the NICU staff, remember that you are an essential part of your baby’s care team. Your commitment to breastfeeding can provide comfort, nourishment and a sense of familiarity to your baby during this critical time.

Benefits of breastfeeding in the NICU

A mother’s breastmilk is specially designed to meet their baby’s unique nutritional needs, whether they begin their lives in the NICU or typically develop and are born at term. Babies in the NICU, especially, benefit from breastmilk for their health and development. A study in Nature.com shows, “…early human milk feeding is associated with a decrease in mortality and morbidity in the Neonatal Intensive Care Unit (NICU), decreased rates of illness and rehospitalization in the first year of life and improved neurodevelopmental outcomes.” We also know that a mother’s colostrum is a powerful protector. Many nurseries will ask mothers to express colostrum to be used for oral care and first tastes while in the NICU. Besides breastmilk’s nutritional benefits, breastfeeding also may facilitate bonding between mother and baby, reduce a mother’s stress levels, and decrease the risk of postpartum depression.

Is bottle feeding easier than breastfeeding?

It’s commonly misunderstood that breastfeeding is harder for babies than bottle feeding. Instead, studies show in many instances that breastfeeding is easier than bottles.
  • With bottle feeding, babies may work hard to extract milk from the nipple, expending extra effort to consume their required nourishment.
  • With breastfeeding, babies can grasp, latch and regulate milk flow according to their comfort and pace. They control how much they consume and how to coordinate their sucking with breathing.
Unlike some instances of hurried bottle feeding that might involve manipulating the nipple to facilitate milk intake, breastfeeding respects the baby’s innate rhythm of sucking, breathing and swallowing.

Why skin-to-skin contact matters for babies and new moms

One of the most important benefits of early breastfeeding is skin-to-skin contact. It’s an intimate and powerful connection a mother will have with a baby. Skin-to-skin contact creates physiologic organization of both the baby’s and the mother’s bodies. Following are some ways new babies and mothers benefit from skin-to-skin contact:
  • The mother’s body supports the baby’s temperature regulation. Once the fetus leaves its temperature-controlled environment of the uterus, the mother’s physiology heats up to ensure the baby is warm enough.
  • The mother’s breathing helps to regulate the baby’s breathing.
  • The mother secretes oxytocin, also called “the love hormone,” when the baby is nearby, supporting attachment as well as social and emotional development.
Even babies who aren’t breastfeeding can benefit from skin-to-skin interaction. In the NICU, younger and more critically ill babies are often transferred to their mother’s bodies so that the baby benefits from the mother’s ability to regulate their physiology. Skin-to-skin contact is now becoming a more standardized procedure for those babies who are stable enough to be off their mechanical support systems.

Continuing your breastfeeding journey beyond the NICU

Just because you know the benefits of breastfeeding doesn’t mean it’s easy. Having a baby in intensive care is extremely stressful – often coming after a stressful pregnancy, labor or delivery. The stress of these circumstances could interfere with successful breastfeeding, so mothers who can’t breastfeed should never feel guilty. Even with the best intentions, there are variables new mothers have to manage to be successful at breastfeeding. All mothers – especially those with babies in the NICU – need more support for breastfeeding from policies, NICU resources and community support. Following are some breastfeeding resources available:
  • Hospitals usually have lactation consultants on staff for in-patient support and outpatient appointments
  • LaLeche League operates in most communities.
  • The Affordable Care Act in 2011 made coverage of lactation consulting a federal requirement for mothers from the prenatal period through weaning. This includes the cost of breast pumps. If your health plan fails to provide coverage, the National Women’s Law Center has a script to use when calling a health plan.
  • SimpliFed provides a virtual baby feeding and breastfeeding support service, fully covered by health plans in all 50 states.

Continuing breastfeeding at home after discharge from the NICU

Babies in the NICU typically eat well at discharge but may have eating difficulties around two to four months. This is a period where babies’ brains are reorganizing, which leads to a change in the way they eat. It’s essential that babies get the most positive feeding experiences at this stage. Researchers have found that by three months, babies’ brains are about 65 percent the size they’ll be in adulthood, making the period around and right after a time of huge brain growth and organization of neurons. Any unused neurons are shed. This is why early experiences impact brain organization, and lay the foundation for all behavior – including eating. Professionals who support families after NICU discharge need more information about attending to the eating needs of these babies and their development. Educational programs about the science behind supporting babies’ transitions into their homes are essential for early intervention providers. By understanding the benefits of breastfeeding in the NICU and beyond, parents can make informed choices that support their baby’s health journey. It’s up to everyone who supports families with new babies to make caring for them easier.
Joy Browne, PhD teaches multi-disciplines in areas of development from newborn to very young infancy, especially for babies who start their lives in intensive care. Her research has helped to develop standards of evidence-based care for infant and family centered developmental care.

On the threshold of a new school year…

Published by Jaclyn Pederson, MHI on Aug 25, 2023

Dear Friends of Feeding Matters,

If you are one of the many people embracing the return of routines, packing lunches, sports and activities, you’ve been on my mind. I am wishing you a smooth transition from lazy summer days to busy homework nights. At Feeding Matters, we are acutely aware that this time of year can bring a mix of excitement and apprehension.

Our recent consensus endeavor, a summit with leaders in the PFD and ARFID communities, also produced a mix of enthusiasm and anticipation, underscores what is core to our mission. We believe in the power of consensus and the value of uniting various perspectives to focus on what children need. Reflecting on our recent Consensus Summit in partnership with Emory University and Children’s Healthcare of Atlanta, I was reminded of the magic of collaboration. This gathering allowed Feeding Matters to dive into the challenges and solutions related to PFD and ARFID diagnoses. The collective effort of this group is propelling us toward a brighter future, and we intend to share these results with our wider community soon.

The lessons that we learned from this consensus serve as key principles that resonate within our team but that I also think might benefit us all:

  • Embracing core values: Where there is disagreement, values aren’t aligned. By bringing individuals to the table, united in their dedication to improve access to care for children and families, we found pathways to alignment.
  • Words matter: The meanings, intentions, and assumptions tied to words often vary.  As we work to provide clarity within our field, we always have to ensure that we are speaking a shared language.
  • Continuous learning: A shared commitment to always do better invites us to approach each day with open minds, ready to absorb insights from one another.
  • Challenging assumptions: Assumptions can easily take root regarding various fields, disciplines, and individuals. But only by actively questioning these assumptions can we begin to find common ground and forge meaningful connections.

While these principles have allowed us to learn and grow, they also extend to our full community.

As we stand on the threshold of a new schoolyear, we approach it with a shared commitment to collaboration and growth. Thank you for being an essential part of our community. Together, we can transform challenges into triumphs and nurture a more promising future for all children with PFD, their families, and the professionals who treat them.

In gratitude,

Jaclyn Pederson, MHI
CEO, Feeding Matters

When ‘Expert’ Advice Is Unhelpful: A Guide to Avoiding Misleading Social Media Advice on PFD

Published by Feeding Matters on Jul 17, 2023

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.

woman on phoneA 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

visual description of what CRAAP stands for

When using social media to view healthcare information, one tool Miluk recommends considering is the aptly-named CRAAP test.

CRAAP stands 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 blog by Miluk on why she recommends clinicians attend Feeding Matter’s annual PFD conference.

Advancing Feeding Matters: A Report from Dublin and London

Published by Jaclyn Pederson, MHI on Jul 13, 2023

Greetings, Feeding Matters Community! It’s with great pleasure that I bring you an exciting update on the summer awareness travels of the Feeding Matters team. As Feeding Matters’ CEO, I had the privilege of attending the International Family Nurses Conference alongside our Program Manager, Heidi Van der Molen. Our mission to raise awareness and enhance support for families facing pediatric feeding disorder (PFD) took center stage as we engaged with esteemed professionals, discussed key concerns, and explored opportunities for collaboration.

Hayley Estrem, PhD, RN; Heidi Van der Molen; Jaclyn Pederson, MHI at the International Family Nurses Conference

Feeding Matters’ Power of Two: Empowering Parents, Transforming Lives
During the International Family Nurses Conference in Dublin, Heidi and I had the honor of presenting on Feeding Matters’ “Power of Two” program. We shed light on the incredible impact of parent-to-parent support in the PFD community, emphasizing the significant role it plays in helping families navigate their feeding concerns. By sharing personal stories, challenges, and triumphs, we showcased the power of connections, empathy, and knowledge exchange in transforming lives. It was truly inspiring to witness the positive response and engagement from healthcare professionals and fellow attendees. If you are interested in sharing this program with your families or participating as a family member yourself, please visit our family support roadmap to learn more.

Heidi Van der Molen (left) and Jaclyn Pederson (right) presented at the International Family Nurses Conference in Dublin

Addressing Top Feeding Concerns: A Pathway to Support
As part of our presentation in Dublin, we highlighted the “top feeding concerns” that parents often encounter when they find Feeding Matters. By understanding these concerns, we aimed to equip healthcare providers and families with valuable insights into common challenges faced by children with PFD and the struggles that families often face as they work to ensure their children are growing. By sharing our expertise, resources, and evidence-based strategies, we are committed to nurturing a supportive environment that fosters positive outcomes for children with PFD.

Leading the Way with Research and Tools
Feeding Matters’ dedication to research and the development of practical tools was also showcased through our poster presentations at the conference. One poster focused on our comprehensive Feeding Matters family guide, a valuable resource for families seeking guidance on managing PFD. The family guide, available here, is a great tool to any parent on the PFD journey. The second poster highlighted our Infant and Child Feeding Questionnaire and the research to identify 6 questions to facilitate early identification of PFD. These initiatives demonstrate our commitment to bridging the gap between research and practice, ensuring that families receive the support they need.

Heidi Van der Molen with Feeding Matters poster on the Family Guide to PFD

Collaboration and Advocacy on an International Scale
In addition to the informative sessions, we had the opportunity to connect with various partners, potential collaborators, and researchers from around the world. Engaging in insightful discussions, we explored ways to advance the field of pediatric feeding disorder and promote early intervention strategies. Notably, I had a productive meeting with Natalie Morris, the Founder and CEO of the Feeding Trust in London. Our discussion focused on the growing challenges related to Avoidant/Restrictive Food Intake Disorder (ARFID) and PFD in the UK. Together, we aim to enhance awareness, understanding, and pathways for assessment and treatment in the medical professional community and families alike.

Natalie Morris, CEO & Founder of The Feeding Trust (left) and Jaclyn Pederson, CEO of Feeding Matters (right)

Looking Ahead: Our Commitment to Progress
As we reflect on the events in Dublin and London, it’s evident that Feeding Matters is playing a pivotal role in raising awareness and fostering change within the PFD community. But we know that we are not the only ones. We have been excited and grateful as we’ve seen a huge increase in presentations about PFD at major conferences across the country and world. Together, we can continue making strides towards a future where every child has the opportunity to thrive.

Feeding Matters’ journey to Dublin and London has been a great chance to talk about PFD, build partnerships, and focus on collaboration and research. Through our impactful presentations, informative posters, and meaningful conversations, we have expanded our network, shared our expertise, and advocated for improved support systems for families facing pediatric feeding disorder. As we move forward, we are more determined than ever to drive positive change, empower parents, and advance the field of PFD so that all children with PFD will thrive.