Encouragement Feeding Program

Overview

The Pediatric Encouragement Feeding Program (EFP) at the Kluge Children's Rehabilitation Center is an intensive day treatment program that focuses on treating pediatric feeding disorders by normalizing the oral feeding experience. An interdisciplinary team approach is utilized in a family centered care atmosphere to ensure family participation and long term success. This program was started in 1990 and is well established. We continue to use outcome measures and parent satisfaction surveys to help us evolve and grow as a program.

Who needs the Encouragement Feeding Program?

Most people take eating for granted, but for some children, eating can be an unpleasant experience. The ability to eat normally is dependent on intact oral structures (lips, tongue, palate, jaw) and normal eating experiences. When there is a problem with oral structure or if early feeding experiences are unpleasant, normal eating can become disrupted. As a result, eating can become unsafe, stressful and many times aversive.

Children with unsafe or inefficient feeding may receive a supplemental feeding tube (nasogastric- "NG" or gastric- "G-tube") to promote normal growth and nutrition. Tube feeding schedules may not mimic age appropriate feeding schedules and therefore do not promote self regulation of hunger/satiety. These children may never develop the "drive" to eat, although they may be interested in experimenting with food in small quantities. Other children may spend long periods of time hospitalized and have unpleasant experiences surrounding feeding, which in time can lead to oral hypersensitivity, feeding aversion and food refusal.

In addition to the physical aspects that can create or maintain an oral aversion, parental or caregiver attitudes towards meal time management can indirectly affect the eating process. Mealtime can easily become unpleasant when the expectation is weight gain, but the child refuses to eat. The family may be told to get the child to eat but not shown the proper methods for success. Outpatient therapy may be successful in the development of eating "readiness" skills, but may not be successful in weaning or decreasing tube feeding amounts due to infrequent visits, unnatural feeding environment, and a long history of resistant/avoidance behaviors.

How does it work?

To help children with feeding aversion and tube dependence, an intensive, interdisciplinary program aimed at successful weaning from a feeding tube was developed. The Encouragement Feeding program was designed from those children who are tube-dependent, but who exhibit normal oral motor skills. There is usually an element of hyper- or hypo-sensitivity or inexperience, but no abnormal oral motor patterns that may interfere with safe and efficient eating. The program lasts 2 weeks and is dependent on parent participation.

Why does it work?

KCRC demonstrates a widespread philosophy of wellness and family centered care. The Encouragement Feeding Program is based on the idea that children with feeding difficulties and/or tube dependence need to be treated in an environment that exposes them to wellness and holistic treatment. These children need to have improved sensory integration, increased oral competence and internal motivation to learn to eat in the most normal, age appropriate manner. The program goal is to initiate the weaning process or help a child transition to age appropriate eating while promoting normal, age-appropriate eating behaviors. This is accomplished by immersing children in sensory and oral functional therapy in the most normal and least restrictive manner. All our our children are fed in the cafeteria with parents present and normal-for-age behavior management techniques are used when appropriate. We teach our families the proper division of eating responsibility; it is the child's responsibility to eat and it is the family's responsibility to provide the right environment, foods, and opportunities to eat. We feel that through comprehensive, holistic treatment of sensory integration, oral competence, and internal motivation, these children will become independent, normal eaters. Over the last 12 years we have continued a success rate over 75% for weaning children from Gastrostomy tubes. We have also successfully helped many children without feeding tubes to transition to more developmentally appropriate textures and foods.

What we have learned?

Over the last 10 years or so, there has been an increase in the population of children who are surviving pre-maturity and respiratory and cardiac problems. As a direct result of this increased survival, there has been an increase in children with feeding difficulties. Children born with multiple complications are at greater risk for oral functional/feeding problems. These children experience many months/years of invasive oral procedures, are unable to regulate their own hunger/satiety and may miss out on the critical period or oran exploration and exposure (ages 6 to 12 months). In addition, their ability to bond with a parent or experience independence or autonomy may be hindered. The result is a population of children who are tube dependent, highly hypersensitive and have had limited to no positive oral experiences with foods. Over the last 12 years, we have built a program specifically designed to meet the needs of this challenging population. Children from over 30 different states and several countries have come through the KCRC program and inquiries have come from as far away as New Zealand, Japan, Canada, England and France.

Keys to Success

Over time it has become evident that certain elements are key to the success of any feeding program.

Creation of Internal Motivation

To make the transition to oral feeding work long term, the child must develop an internal motivation to eat. Some of the children may eat in the short term to receive praise or rewards, but will not continue such behavior long term if their bodies are not internally motivated to do so. One of the most important elements of of a feeding program must be a development of internal movtivation in the form of hunger/satiety. To create this internal motivation, these children need to be made to understand hunger/satiety as much as possible. This takes place through cutting back or rearranging the tube feeding schedule to create the feeling of hunger and fullness. Decreases in tube feeding must be based on current growth parameters as determined by the nutritionist. For some of our children, it has been possible to teach the child that it is their responsibility to eat, not the parents responsibility to feed their child. This is the second piece of creating internal motivation. In the long term, the child needs to be taught that the parent will provide the foods, but that it is the child's responsibility to take in enough for growth. For most of these families, this is a foreign concept as they have spent several years "trying to get their child to eat." Teaching them to step back and allow the child to not eat at a meal or snack is very difficult.

Immersion into Sensory Stimulation

The second element that is extremely important for success in this program is the immersion into the entire sensory experience, not just working on oral sensation. Most of these children have sensory systems that are disordered. Oral aversion is usually just one element to their sensory difficulties. A successful program must include intensive sensory integration therapy. In the KCRC Encouragement Feeding Program, this is accommplished through direct occupational (OT) and physical therapy (PT), and if warranted, therapeutic recreation, hydrotherapy, and preschool. In all of these arenas, the children are being challenged to address sensory integration. OT and PT address the traditional areas of difficulty and therapeutic recreation and preschool accomplish this through developmentally appropriate activities. Planting plants, playing in sand, making peanut butter play dough, playing in the water, etc. all address the entire child. Most parents report improvements in the attitude of their child towards dirty hands, sticky materials, and are thrilled with the first finger paintings.

Immersion into Eating

Equally important as immersion into the sensory situation is the immersion into oral eating. These children have missed out on the critical period of time when learning to eat is normal and have no pleasant oral experience. Most of these children have put very little in their mouths and when they put food items up to or in their mouths gagging occurs. Most often at home this gagging has resulted in a discontinuation of the feeding situation. The children in the EFP are fed up to 4 times per day depending on their age. They are immersed in the oral experience. Usually within a day or two gagging is significantly reduced and intake becomes measureable. When compared to outpatient therapy which usually takes place 2 to 3 times per week or less, our program has completed 8 to 12 weeks of home therapy in one in the KCRC day treatment program!

Individualized Programs

Each child brings a completely different situation and therapy history. It is a must to individualize the program to treat the special needs of each child. Most of these children have never eaten anything, but some are able to eat higher textured in small amounts. The program must take into account the eating experiences brought by each child and begin accordingly.

Determination of the primary barrier to normal eating

Determination of the primary barrier allows for better individualization in each therapy and thus improved outcomes for each child. Most children demonstrate more than one barrier but it is possible to indentify the predominant one and to peel back the layers, one layer at a time, until the child is on their way to becoming a happy, competent eater. Examples of common barriers include: poor hunger/satiety, or internal motivation, inexperience, severe sensory/anxiety issues, behavioral issues, or cognitive delays/disorders.

Case Management

This is not case management in the traditional sense. We are referring to one person who, with input from many, determines the major barriers that are preventing a child from becoming a competent oral eater. This person thinks holistically and not just about a child's oral skills. Recognizing that unresolved gastrointestinal issues, disordered sensory processing, oral inexperience, a lack of internal motivation, and structural issues impact highly on a child's competence and enjoyment of eating is very important.

The KCRC Encouragement Feeding Program is unique in several ways:

• Family Centered Care
• Treat the whole child
• Day treatment program
• Short length of stay
• In-depth pre- and post- follow-up
• School and therapeutic recreation services
• Proven success rate
• Intimate, highly personalized program

Therapeutic Recreation

Children are typically seen 3 times weekly for therapeutic recreation (TR) sessions. These sessions take place in a quiet area of the KCRC gymnasium.  The focus of this therapy is on the following elements:

• Age appropriate play/developmental play
• Exposure to pre-school/early elementary activities
• Texture exploration
• Food play
• Pre-cooking skills
• Providing a stree free environment to play during their admission
• Allowing for parent-child play in a stress free environment
• Providing resources to parents

Activities are selected based on the individual child’s needs. Sessions are conducted in a safe environment with success-oriented progression. Family members are encouraged to participate in the sessions. Addressing these developmental milestones may increase a child’s comfort level and decrease anxiety related to the eating experience.

Horticultural Therapy

This program is part of the Therapeutic Recreation (TR) department at KCRC. During scheduled TR time, children are seen two times weekly in the greenhouse and garden area. The main focus of this therapy is textural exploration of outdoor textures, including sand, potting soil, water, plants and grass. Activities are designed to expose children to these textures in a non-threatening, playful way that encourages participation. Activity examples include transplanting and nature crafts for exploration with the hands, and barefoot nature walks and sandbox play for exploration with the feet. Goals are set according to the child’s comfort level.  For instance, if getting hands dirty at the greenhouse worktable is too intimidating, we start out playing with match box cars in a small bin of soil. If getting into the sand box is not possible, making a craft using sand might be the starting point. With repeated exposure to these textures through organized horticulture activities, children are often able to explore them more independently, and with a longer attention span, than before.

Occupational Therapy

The occupational therapist's role in the KCRC Feeding Encouragement Program includes evaluation of the child's developmental skills, including their sensory processing and motor abilities, and treatment to strengthen these skills. The OT utilizes parent report, clinical observations, and possibly standardized assessments to determine the child's strengths and needs. Treatment tends to be focused on use of sensorimotor activities to promote a calm, organized state of arousal and to enhance the child's ability to partake in the feeding program.

Sensorimotor activities might include swinging and bouncing, blowing whistles and bubbles, and playing with Play Dough. Most children look forward to and enjoy their OT sessions. Parent education is another important part of the OT session.  We try to expand the parents’ understanding of sensory processing and sensory integration and how these skills affect their child’s ability to function in the world.

Hospital Education Program

The Hospital Education Program (HEP) is a school within the walls of a hospital. As a state operated program, the HEP provides free education services to children who are hospitalized. Your child is welcome to participate in learning and play opportunities during his/her day treatment program. Infants are seen for individual sessions with or without their parents. Preschool is offered to children 1-5 years of age. School sessions may include dramatic play, art, creative movement, and activities with blocks, puzzles, and stories. Education services are also available for school-aged children in the day treatment program; attendance credit is transferred to the home school at discharge.

Oral Functional Therapy

All participants in the EFP are seen up to 4 times per day for 30 minute sessions of oral functional therapy. The goal is to help children build a relationship with food, to expose them to oral exploration, and to eliminate gagging or fear of foods. Therapy is initiated at the level where the child is most comfortable. Parents are included in every session and are active participants. Therapy takes place in the KCRC dining area and the goal is to normalize the situation as much as possible.

Some children start with creamy, smooth foods to help eliminate gagging and help them learn to swallow without fear. Other children start with learning how to bite and chew higher textured foods. The goal of the program is to increase normal-for-age oral intake in the most normal environment possible. Additional goals include teaching the child to pay attention to their own body cues such as hunger/satiety; promoting oral competence, and helping to organize the sensory system.  Family education regarding meal-time management and normal toddler eating patterns is provided at every meal.

Nutritional Services

Nutritional evaluation and counseling is a big part of the KCRC program. A registered dietitian will evaluate your child's past and present growth patterns and help make decisions regarding tube feeding. In addition, he/she will make suggestions as to how to balance your child's diet. It is very important to bring an updated copy of your child's growth chart.

Other Services Offered

Some of the children who participate in the KCRC Encouragement Feeding Program may also benefit from one or more of the following services in addition to what is described above. These may include:

• Psychology
• Physical therapy
• Pediatric Gastroenterology

Learn more: Feeding Barriers & Feeding Protocol »

More information: Contact Polly Tarbell at 434-924-8242 or mcv2w@virginia.edu

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