Telehealth offers advantages for treating children with feeding disorders

2024-01-08

Many neurotypical and most neurodivergent children struggle with feeding difficulties. This does not just affect the child – it impacts the whole family. Focused Approach is a startup that helps children aged six months to 16 years old with feeding disorders. Its program Focused on Feeding has helped families go from hospital bed (with malnutrition) to the dinner table – entirely via telemedicine. In addition to helping individual families virtually, Focused Approach also offers clinics the opportunity to add the Focused on Feeding program to their list of services. Dena E. Kelly is a licensed professional counselor and founder and CEO of Focused Approach. We interviewed her for a deep dive into feeding disorders and how telehealth can help. Q. How did you get the idea for the startup to help kids with feeding disorders? And how did telemedicine come into the mix? A. Feeding disorders in children are a prevalent issue nationwide. In fact, it’s estimated that up to 45% of neurotypical and 80% of neurodivergent kids struggle with feeding difficulties – not eating an appropriate variety and volume of food. When children struggle with eating, it doesn't just impact the child, it impacts the whole family. Over the past 15 years of working with these kids and their families, the biggest barrier has been accessibility to services, either from physical location or waitlist availability for a program. When COVID hit, it forced everyone to get creative in revamping how therapy was conducted. For me, that meant shifting from a hands-on, child-centered therapy to a virtual, parent-focused treatment. What was soon discovered was that the outcomes remained the same, if not improved, for most families. In fact, therapy in the child’s familiar home environment, with parents taking the lead in treatment, offers numerous benefits. Families now can access services directly from their own homes, enabling the child to immediately generalize the skills they are learning. This means there is no transfer of skill from therapist to parent or from clinic to home environment. The child is learning to eat in the place we want them to eat, with the people we want them to eat with. Additionally, this approach helps parents avoid the inconvenience of another car trip to a therapy center. Often families with special needs children are spending a large chunk of their day, every week, driving around to different therapies with no end in sight, as most therapies can require years of service. By using a telemedicine platform for feeding therapy, families can conduct the session in their own kitchen while feeding their child a meal. And most families are able to graduate within six months. Lastly, in addition to significant benefits to the patients and their families, there also are direct financial and operational advantages to clinics. When delivering feeding therapy in person in a clinic setting, it requires both set-up and clean-up time, which can cut the number of clients seen on a daily basis by 25% or more. In this therapy format, therapists also have to build in time for late arrivals or last-minute cancellations. This is common as families could get held up going from one appointment to another, traffic changes or sickness of a family member. This can cause inconsistencies in therapy sessions and lead to a longer duration of time to meet feeding goals. With sessions via telemedicine, late arrivals and cancellations are much less frequent as the session is happening in their own home, so no travel is involved, and even if a family member isn’t feeling well, oftentimes a therapy session can still occur, improving consistency across sessions and decreasing overall therapy time. Despite the clear demand and need for this treatment, there was still a limited number of therapists in any given area that were trained in feeding disorders. As I continued to see the difficulty families had accessing care in a timely manner, I knew there was more that could be done. One of my biggest motivators for opening Focused Approach was to find therapists in the field of applied behavior analysis that were working with children that struggled with feeding difficulties and didn't know how to address it and train them to feel more confident working through the refusal. This way, more therapists would gain an understanding of a feeding disorder and how to treat it so more children could access the service. Q. Your program called Focused on Feeding is designed to help families go from hospital bed to the dinner table through virtual care. Please explain how this works, and where telemedicine comes into play. A. Our Focused on Feeding program is designed to help families in many stages of the food refusal journey. We work with families that can flag the refusal early, usually thanks to another therapist they are working with, and they just need some guidance toward developing structure in meal times or teaching basic eating skills. We also work with families who have a child who has been refusing for years but it has recently become a bigger concern, either due to social difficulties, weight issues or medical challenges. The most severe cases are families who often didn't know there was help for feeding disorders and the child's nutrition intake decreased so low they required a hospital stay and a feeding tube. The therapy includes both direct engagement with the child, as well as parent/caregiver training so the family can learn how to adjust interactions with the child to improve eating behavior. Each case is individualized in how the sessions look day to day but typically involves a lot of prep on the parent's part to set the sessions up for success. The child will always look to the parent's reaction to learn how to behave – we see this outside of mealtime, as well. Since the sessions are heavy in parent/caregiver training, it is easier in most cases to conduct the sessions via telemedicine because they are the ones running the sessions and we are there to provide the support to implement techniques reviewed in training. The program thrives on being able to collaborate with other disciplines the family might already be working with. Occupational and speech therapists can be great support to a child's successful eating. Medical professionals like GI doctors and registered dieticians are helpful consultants to ensure the child's physical body is growing appropriately and work through any medical barriers that may be blocking successful feeding. Feeding challenges can be extremely complex and when a child has a team of providers that can bring together their areas of expertise, it allows that child the greatest opportunity to improve overall symptoms. Q. Please pick a case and talk about the outcomes of using the program and how telemedicine helped. A. I had a family call me from their daughter's hospital room, desperate for help. Their 12-year-old girl had become so malnourished she lost a significant amount of weight and required a feeding tube be inserted to force intake. The medical team wanted to enroll her in an inpatient hospital program to combat her food refusal, but the parents were against the idea. They wanted her to be able to be treated from home. I agreed to take on the case. The treatment was conducted completely via telemedicine and was very heavy in parent training sessions initially, as they needed to address the environment they had created and work through how they were going to make adjustments to make it a positive eating environment for their daughter. During the first couple weeks, each family member experienced a rollercoaster of emotions. Treating them virtually allowed me easier access to support them in between their regularly scheduled sessions, as needed. The child began making gains almost immediately. As her oral food intake increased, her mood and energy level improved and her parents gained more confidence in conducting protocol. She became more internally motivated to eat and required less direct intervention. Within six weeks, she was able to remove the feeding tube and sustain herself on oral food consumption. This was made possible by consultation with her GI doctor and registered dietician. Her parents have learned techniques to help her work through challenges that arise and it has allowed them to go out to eat, both socially with friends and at restaurants as a family. This family went from a six-week daily intensive intervention to once-a-week check-in sessions and will continue to fade frequency of sessions over the next few months until they no longer require continued consultation. Follow Bill's HIT coverage on LinkedIn: Bill Siwicki Email him: bsiwicki@himss.org Healthcare IT News is a HIMSS Media publication.