Pediatric Feeding Disorders and Severe

Developmental Disabilities
Jane O’Regan Kleinert, Ph.D., CCC-SLP1

ABSTRACT

Children with severe developmental disabilities face numerous

challenges to function and participate in activities of daily life. One of
the most significant challenges to accomplishing this goal is that of oral
feeding disorders. Indeed, it is estimated that among children with

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developmental disabilities, up to 80 to 90% present with some level of
feeding disorders. In addition, it has been shown that as the level of
severity of intellectual disability increases, so does the severity of the oral
feeding disorders. Due to the broad range of etiologies that result in
developmental disabilities, types of feeding disorders in the population
vary greatly. This article is designed to provide information regarding
assessment and intervention approaches currently used in this area and
to provide an overview of the evidence available to support these
approaches. Suggestions for much needed future clinically relevant
and immediately transferable research are included.

KEYWORDS: Pediatric feeding disorders, developmental

disabilities, dysphagia

Learning Outcomes: As a result of this activity, the reader will be able to (1) identify the main classifications
of feeding disorders for children with severe developmental disabilities (CSDD); (2) describe the primary
elements of an assessment of feeding disorders in CSDD; (3) list three current approaches used in feeding
intervention for CSDD; (4) discuss the need for empirical evidence to support assessment and intervention of
feeding disorders in CSDD.

D evelopmental disabilities (DDs) are typ- and physical impairments” that is identified
ically defined as “a severe, chronic disability of prior to age 22 and affects three or more of
an individual that is attributable to a mental or primary life activities including “self-care,
physical impairment or combination of mental receptive and expressive language, learning,

1
Department of Rehabilitation Sciences, University of Semin Speech Lang 2017;38:116–125. Copyright # 2017
Kentucky, Lexington, Kentucky. by Thieme Medical Publishers, Inc., 333 Seventh Avenue,
Address for correspondence: Jane O’Regan Kleinert, New York, NY 10001, USA. Tel: +1(212) 584-4662.
Ph.D., 900 S. Limestone St., Lexington, KY 40536-0200 DOI: http://dx.doi.org/10.1055/s-0037-1599109.
(e-mail: jklei2@uky.edu). ISSN 0734-0478.
Pediatric Dysphagia; Guest Editor, Gilson J. Capilouto,
Ph.D., CCC-SLP, ASHA Fellow.
116
 FEEDING DISORDERS AND DEVELOPMENTAL DISABILITIES/KLEINERT
mobility self-direction, capacity for indepen-
dent living and economic self-sufficiency.”1,2
DDs affect approximate 1.5% of the U.S.
population and result from a broad range of
etiologies including chromosomal and genetic
disorders, metabolic disorders, teratogenic dis-
orders (exposure to toxins), infections, intellec-
tual disability, neurologic disorders or disease,
birth trauma or loss of oxygen, and prematurity,
among others.
Children with severe DDs face numerous
challenges to function and participate in activi-
ties of daily life. One of the most significant
challenges to accomplishing this goal is that of
pediatric oral feeding disorders. Indeed, it is
estimated that among children with DD, up to
80 to 90% present with some level of feeding
disorders.3–6 In addition, it has been found that
as the level of severity of intellectual disability
increases, so does the severity of the oral feeding
disorders.7 Such disorders vary in their charac-
teristics and origins and typically are classified in
a variety of ways with no one classification of
pediatric feeding disorders used across interven-
tionists and researchers.8–12 Frequently used
classifications include neurologically based,
structurally or anatomically based, and behav-
ioral/sensory-based feeding disorders (e.g., as
seen associated with autism spectrum disor-
ders).9–11 It is important to note that in children
with DD, feeding challenges and interventions
go beyond the realm of “swallowing.” Because
children with severe DD have experienced feed-
ing problems from birth or very early childhood,
they may well have never experienced a normal
sucking, swallowing, chewing pattern and pres-
ent differently from an adult with an acquired
swallowing disorder. With children, we often
hear the phrase, “Feeding is more than swallow-
ing,” because all phases of swallowing along with
multiple other potential motor, sensory, intel-
lectual, and experiential elements are in play and
must be addressed to facilitate progress in oral
feeding. Multiple assessments and interventions
have been specifically developed, proposed, and
implemented to address pediatric feeding dis-
orders. However, despite the very high frequency
of feeding disorders among children with DD,
there appears to be limited evidence-based
research to support any one approach to pediatric
feeding disorders.13–16
117
This article is intended to provide (1) an
overview of the major types, characteristics, and
challenges for pediatric feeding disorders in
children with severe DD; (2) a review of the
assessments and interventions currently in use
with this population; (3) evidence available
regarding effectiveness of current assessments
and interventions; and (4) resources for the
readers’ further investigation.
TYPES OF PEDIATRIC FEEDING
DISORDERS
Structural Differences and Anomalies
Structural differences and anomalies are com-
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mon among children with severe DD. These
can occur in the oral/pharyngeal area and in
other parts of the body as well and interfere with
efficient feeding and metabolizing of food.
Feeding therapists working with children
with DD must be familiar with the impact of
structural differences in the oral pharyngeal area
such as oral/facial clefts, atresia, differences in
size and shape of the oral mechanism, dental
malocclusions, short frenulum, and laryngeal
hypoplasia.5,10,17 Just as importantly, however,
are those structural anomalies in other areas of
the body that could have a direct impact on oral
feeding including differences and disorders in
the respiratory, cardiac, and gastroesophageal
systems. Such structural differences can only be
addressed by a full medical team including
surgeons, otolaryngologists, gastroenterolo-
gists, dieticians, nurses, as well as occupational
and physical therapists. The speech-language
pathologist (SLP) plays an integral role on the
team from assessment to treatment. Highly
specific interventions and medical research are
available in this area, along with various surgical
and nonsurgical medical procedures.
Neurologic and Neurodevelopmental
Disorders
Neurologic and neurodevelopmental feeding
disorders, sometimes referred to as sensory-
motor disorders, can affect coordination, move-
ment, and/or muscle tone throughout the body
or can specifically affect oral motor movement.
Examples of etiologies include feeding disorders
118 SEMINARS IN SPEECH AND LANGUAGE/VOLUME 38, NUMBER 2
that occur as a result of central nervous system
dysfunction such as cerebral palsy or genetic or
chromosomal disorders such as Down syn-
drome. Feeding disorders of this type typically
involve not only the oral/facial area and swallow-
ing mechanisms but also the entire body, result-
ing in poor respiratory control and poor overall
body positioning and stability, which are all
necessary for safe feeding and swallowing.
Neurologic disorders that may be more
specific to the oral-motor system include dis-
orders or diseases that involve cranial nerve
damage, such as Möbius syndrome. Paralysis
and paresis would be common with this type of
neurologic involvement.
Sensory-Based and Behaviorally Based
Food Aversion
This category, although not new, has begun to
receive much more attention in research and in
clinical practice in the past several years. Food
aversion encompasses a broad set of characteristic
and behaviors. Food aversions include food
sensitivities, sensory defensiveness, and food
rejection, which may occur as a result of a variety
of situations and conditions. These conditions
include refusal of food after gastric pain, slow
gastric emptying, and other conditions that result
in unpleasantness associated with eating. Even
after the medical condition is corrected, these
children may still resist eating due to their history
of negative reactions of their body to food. Other
reasons for food avoidance include children with
hypersensitivities to taste, smells, textures, and
visual aspects of food. Children with sensory
integration disorders and often children with
autism have such responses. Lack of exposure
or experience with eating and food can also result
in food aversions. Children who have been
primarily tube fed or children who have experi-
enced deprivation or neglect may evidence food
rejection. Some children with feeding issues are
commonly known as “picky eaters” and may
refuse to eat certain foods or eat only a very
circumscribed set of foods. Finally, some children
may refuse food for behavioral or psychological
reasons. In all cases, poor nutrition and poor
weight gain are possible.12
Although the observable behaviors of these
feeding disorders are often similar, researchers
2017
and experts differ on approaches to specific
disorders depending on their discipline. Occu-
pational therapists and specialists in sensory
disorders provide children with various sensory
experiences with foods by gradually introducing
new foods based on their sensory characteristics
and emphasizing positive experiences with
food.18,19 Behaviorally based approaches focus
on food refusal by addressing environmental
factors and applying systematic behavioral
interventions designed to increase food intake.20
ASSESSMENT OF PEDIATRIC
FEEDING DISORDERS
Because the focus of this article addresses feeding
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disorders in children with severe DD, the dis-
cussion on assessment and interventions will
primarily pertain to those feeding problems
associated with severe neurologic and motor-
based impairments and those related to severe
food aversions, which are frequently reported in
children with autism spectrum disorder.
Regardless of the orientation of researchers
and interventionists working with pediatric feed-
ing disorders, there is general agreement that
these disorders are complex, arise from varying
etiologies, and require an interprofessional
approach at assessment.17,20–22 Members of the
interprofessional team will vary according to the
child’s needs. Table 1 lists and describes roles of
potential interprofessional team members.
Assessment Approaches
The primary reasons for feeding assessment are
to determine (1) if the child is or can be a safe
oral feeder; (2) whether the child is receiving
and properly absorbing nutrition; and (3) what
the child currently consumes and what may be
lacking to ensure proper nutrition, weight gain,
and health. This article will deal with the SLP’s
role in the clinical assessment of pediatric feed-
ing. The reader is referred, however, to the
article in this issue by Arvedson and Lefton-
Grief for information on the multiple instru-
mental assessments available for identifying
swallowing and feeding problems, some of
which arise from gastrointestinal, metabolic,
cardiac, respiratory, and other health issues
that frequently occur along with DD.23
 FEEDING DISORDERS AND DEVELOPMENTAL DISABILITIES/KLEINERT 119

Table 1 Potential Members of the Pediatric Feeding Team

Discipline Specialty Area Information to Access

Family/caregivers History, current status, concerns

Pediatrician/primary Child’s overall health Care for newborns, infants, children, and
care physician adolescents; weight gain/loss
Gastroenterologist Gastric and esophageal disorders Gastric function and structures, reflux, GERD,
surgeries, medications, feeding tubes, etc.
Cardiologist Heart and circulatory status Precautions, medications, surgeries
Pulmonologist Respiratory issues Medications, surgeries, precautions
Otolaryngologist Ears, hearing, palatal issues, etc. Medications, hearing status, FEES
Radiologist MBS, gastric studies Aspiration, gastric study results
Neurologist Neurologic status Surgeries, neurologic disorders and results,
shunt insertion and management
Allergist Food and other allergies Foods to avoid
Speech-language Feeding and swallowing, Assessment and treatment of feeding disorders,

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pathologist communication instrumental assessment, communication
systems for children with CCN
Dietician Diet, nutrition, weight Daily diet, food exchanges, nutrition, etc.
gain or loss, etc.
Nursing Overall health Ongoing support of child and family
Physical therapist Gross motor skills and respiration Handling of muscle tone, positioning for
feeding, preparatory respiration activities
Occupational therapist Fine motor skills, sensory Sensory and food aversions, calming or
development and status alerting strategies, adaptive equipment
Educator/special Educational and cognitive status Learning patterns, activities and participation
educator needs
Psychologist Cognitive, behavioral, Family support, behavioral strategies
social, and emotional status
Audiologist Hearing and balance Amplification, communication, cochlear
implant settings

Abbreviations: CCN, complex communication needs; FEES, flexible endoscopic evaluation of swallowing; GERD,
gastroesophageal reflux disease; MBS, modified barium swallow.

Published Assessments clinical utility and psychometric properties.

Clinical assessments of pediatric feeding fall into
the following categories: observational, criterion
referenced, standardized, and interview based. A
systematic review of noninstrumental swallow-
ing and feeding assessments for children was
reported by Heckathorn et al in 2016.24 Thirty
assessments, either in professional literature or
commercially published, were reviewed; all uti-
lized either clinician or caregiver responses.
Populations, designs, and areas of assessment
varied significantly and the majority of the
instruments did not include instructions for
use. Very little data on reliability and validity
were reported. Benfer et al completed a system-
atic review of nine measures of pediatric feeding
in 2012.25 They analyzed instruments for both
Two instruments, the Schedule of Oral Motor
Assessment and Functional Feeding Assessment
modified, emerged as having the strongest psy-
chometric properties,26–28 but the Schedule of
Oral Motor Assessment and the Dysphagia
Disorders Survey showed the strongest clinical
utility for decision making.29 Both of these
systematic reviews cite the extensive problems
in the area of assessment in regard to standardi-
zation of assessments, high variability among
instruments, and the need for research in this
area. The reader is referred to both of these
systematic reviews for extensive listings of pos-
sible assessments of pediatric feeding. There are,
however, some frequently used and easily acces-
sible checklists available to clinicians. The
120 SEMINARS IN SPEECH AND LANGUAGE/VOLUME 38, NUMBER 2
American Speech-Hearing-Language Associa-
tion (ASHA) has a variety of assessment tem-
plates available for use with pediatric feeding, as
do several of the more popular texts in this
area.30–32 With the advent of behavioral ap-
proaches for the assessment and intervention
of food aversion disorders, there are also some
highly systematic, observational, and interview-
based assessments available in the literature of
behavior and psychology.
Clinical Assessment in Pediatric
Feeding
Children with DDs and feeding disorders most
commonly receive ongoing clinical assessments
of feeding by the SLP as part of the therapeutic
process. ASHA has developed materials to guide
such assessment. The same elements are also the
focus of the most frequently used clinical/obser-
vational assessments and checklists available in
texts or developed by individual clinics or in-
stitutes that focus on pediatric feeding.10,11,17,33
Elements most commonly included in the pedi-
atric feeding assessment include extensive devel-
opmental, medical, and feeding histories;
current nutritional status and food intake; type
of foods and feeding utensils currently used and
or tolerated; sensory responses and preferences;
mealtime routines and problems; postural con-
trol and stability; movement patterns and motor
control; oral motor structure and function; nor-
mal and abnormal feeding patterns in oral
structures during feeding (suck-swallow-breath
triad, bottle and cup drinking, biting, chewing,
and so on); signs of aspiration or choking; and
family concerns. These assessments require an
interprofessional team. In cases where there are
no obvious motor impairments, assessment of
the child’s sensory responses to foods, history,
and behavioral patterns is emphasized.
Best practice tells us that the clinical feed-
ing assessment should be conducted with the
family or primary caregivers as fully participat-
ing members of the team. To obtain the most
natural and valid example of the child’s current
feeding patterns and skills, the primary caregiv-
er should be the individual who initially feeds
the child during the assessment. This not only
provides a true picture of the child’s current
functioning, but gives the child with DD, who
2017
may be wary of unfamiliar people and situa-
tions, a greater sense of security, allowing the
observer a chance to view the interactions
between the child and caregiver. Input from
physical and occupational therapists regarding
positioning, handling of muscle tone, seating,
feeding utensils, cups, and so on will also be
necessary to determine the child’s current safety
and efficiency in eating. During intervention,
assessment is ongoing with specific monitoring
of caloric intake and weight gain/loss, number
of feedings per day and average time to take a
meal/bottle, parental/caregiver concerns, type
and variety of foods accepted, sensory aversions
and preferences, and the child’s health status as
relates to potential signs of aspiration or respi-
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ratory or gastric problems. Any or all of these
issues are of particular importance in children
with severe DD, as they typically have concom-
itant disorders that accompany or precipitate a
feeding disorder. A systematic assessment of
what types of foods and liquids the child can
safely take must be continually updated along
with information regarding the child’s preferred
rate of food intake, amount which can be safely
handled, and whether the child has a reliable
communication system to indicate these intents
to the feeder. The presence of a readable,
reliable means of telling the feeder that he or
she is full, tired, likes or dislikes a food, and so
on is vital to a successful feeding session.
In summary, feeding assessments complet-
ed for children with significant DDs require
instrumental and or/clinical feeding evalua-
tions, interprofessional teams, awareness of
the many etiologies and concomitant disorders
that may accompany or precipitate feeding
disorders, and regular monitoring and reassess-
ment during feeding intervention. Table 2 pro-
vides additional information to guide the
transition from assessment to intervention.
FEEDING TREATMENT AND
INTERVENTION
Guiding Principles
When working with families and children with
severe DDs, important principles should guide
treatment. Treatment must be child- and fami-
ly-centered and built on the individual family’s
 FEEDING DISORDERS AND DEVELOPMENTAL DISABILITIES/KLEINERT 121

assets, priorities, and concerns. In this approach,

Is there evidence of oral/food aversion,food refusal or

What textures are managed (i.e., liquid type, pureed

What food-related characteristics are tolerated (e.g.,

treatment will incorporate the following guiding
principles.2,10,11,33,34
Does the child need adaptive equipment?

What utensils are used independently?

1. Establish trust between the therapist, child,
Food/Utensil/Adaptation Needs

and family by acknowledging their feelings and

Are there dietary restrictions?

Are there dietary restrictions?

focusing on the child’s assets and strengths.
2. Acknowledge and honor cultural differences.

temperature, texture),
foods, solid foods)? Culture plays a significant role in how the
family interacts with others and how they

picky eating?
respond to and address the presence of
disabilities, mealtime routines, and diet.
Religious and regional differences also play
a major role in a family’s diet and preferences.
3. Ensure and honor the child’s communica-
Are sensory preparations and/or behavioral strategies

tions, in whatever form he or she uses. The

What input from medical specialists is needed?

Is preparation of the oral mechanism required?

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child must have some feeling of control during
What quantity/types of foods are needed to

What quantity/types of foods are needed to

feeding and must have ways to indicate likes

Does hypo- or hypertonicity need to be

and dislikes, requests, rejections, increase or

What team members are needed?

What team members are needed?

What team members are needed?

needed to support intervention?
Preparation/Readiness Needs
Table 2 Questions to Explore in Assessment and Intervention of Pediatric Feeding Disorders

decrease in the rate of feeding, and so on.

Treatment should follow the child’s lead.
4. Establish a partnership with the child, fami-
ly, and therapists that reflects respect at all
managed? If so,

levels and within activities during interven-

maintain/gain

maintain/gain

tion. It is only when the family and child are

weight?

weight?

how?

in accord with the therapy program and

strategies offered by the therapist that a
feeding program can succeed and carry
Abbreviations: GERD, gastroesophageal reflux disease; SSB, suck-swallow-breathe.

over from treatment to mealtime at home.

Is there a history of pain or discomfort during or after feeding
Do atypical patterns of movement interfere with feeding?

5. Ensure that a quality assessment drives the inter-

vention plan. This is especially important for
children with severe disabilities as they present
with a variety of potential interfering factors and
What is the etiology? Is there paralysis or

accompanying etiologies that can impact feed-

Is enteral feeding in use? If so, type?
What is the respiratory status? SSB

ing safety, efficiency, and development.

Considerations and Questions

(e.g., GERD, crying fussiness)?

Signs/symptoms of aspiration?
Do medical precautions exist?
Is there paralysis or paresis?

Is enteral feeding in use?

paresis? If so, where?

Treatment Approaches
The etiology of and type of pediatric feeding
coordination?
If so, where?

disorder the child displays will determine the

If so, type?

treatment approaches used. As noted earlier,

pediatric feeding disorders most commonly
seen in children with severe DDs are those
related to structural abnormalities; neurologic
Structural abnormalities and/or

or motor-based disorders as evidenced in move-

ment, muscle tone, or sensory-motor chal-
Feeding Disorder Type

lenges; and sensory and behavioral feeding

neurodevelopmental

Sensory/behavioral

disorders.10 Though some strategies are

comorbidities

effective regardless of the type of feeding disor-

Neurologic/

der, each major category is typically addressed

with certain specific elements.
122 SEMINARS IN SPEECH AND LANGUAGE/VOLUME 38, NUMBER 2
Structural Abnormalities and Feeding
Interventions
Children with DDs often have comorbid con-
ditions and disorders, such as structural abnor-
malities. These disorders vary widely depending
on etiology and the structures affected and
include such varying issues as cleft palate,
gastrointestinal disorders, cardiac disorders,
pulmonary disorders, and esophageal, pharyn-
geal, or laryngeal differences. Various surgical
procedures or appliances may be necessary to
support oral feeding. These problems require
specific medical interventions and a full com-
plement of medical and therapeutic specialists
and are beyond the scope of this article. How-
ever, it is vital that the pediatric feeding thera-
pist be aware of the characteristics and
implications of structural abnormalities and
the effect on the development of oral feeding.
This is especially important because some of
these disorders may require the use of alternate
means of nutrition. The SLP will be an impor-
tant part of the team when the child is ready to
wean from the feeding tube. In cases of gastro-
esophageal disorders, the child may well have
experienced pain prior to the resolution of the
gastric problem. This can result in food aversion
even after the medical or structural problem has
been corrected. Again, the SLP will be involved
in a feeding program for these children.
Neurologic or Sensory-Motor
Disorders and Feeding Interventions
Children with DDs very often have feeding
disorders secondary to a neurologic, neuromotor,
and/or sensory-motor disorder. Some of the more
common etiologies might include cerebral palsy,
various chromosomal and genetic syndromes such
as Down syndrome or Möbius syndrome, trau-
matic brain injury, anoxia, prematurity, cranial
nerve damage, among others. Because these dis-
eases and disorders can affect movement and/or
muscle tone in body or specifically to the oral/
facial area, the most commonly used approaches
are those labeled neurodevelopmental interven-
tions. The principals involved in these approaches
focus on full body stability, midline orientation,
body or oral/facial positioning and handling, and
management of increased or decreased muscle
tone. Various forms of sensory stimulation may
2017
also be used to increase active movement of the
oral mechanisms or to reduce negative responses
oral input. These may include tactile input and/or
thermal stimulation, techniques such as tapping
or stroking, or in some cases, resistance exercises.
The goal is to prepare the body and oral/facial
areas for feeding and to improve the coordination
of respiration, swallowing, and oral/facial move-
ments to improve the safety and efficiency of the
feeding process.29,31,35–38 These approaches are
often interdisciplinary or transdisciplinary in na-
ture because movement, sensory, and oral/motor
control and coordination are targeted. Feeding
targets are gradually increased in complexity
according to the type of liquid and food to be
managed, the developmental complexity of the
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feeding activity (sucking, suck-swallow-breathe
(SSB) triad, drinking, handling spoon foods,
biting, and chewing), the graded texture and
composition of foods (thin versus thickened
liquids, levels of puree, soft solids, and gradually
more difficult solid textures and mixed textures),
and the feeding utensil involved. Attention is
given to body and oral/facial positioning and
facilitation of controlled movements.
Sensory and Behavioral Approaches
In recent years, the field has seen a rise in the
occurrence of children with DDs who have
significant food aversions. As noted earlier, cur-
rent literature is rife with possible causes for this
phenomenon. Edwards et al offer an excellent
overview description, characteristics, assessment,
and interventions for these disorders with an
emphasis on the need for an interdisciplinary
approach.39 Treatments differ significantly de-
pending on the source of the food aversion. There
are several popular approaches in current use
founded on a systematic introduction of foods
based on their sensory characteristics. Character-
istics chosen to be addressed might include color,
texture, taste, temperature, or other salient fea-
tures of the food. An inventory of what foods the
child can currently tolerate is analyzed by their
sensory characteristics. In addition, an assessment
of the child’s overall tolerance to environmental
and sensory input is also analyzed. Based upon the
approach selected, therapy may begin with food
or it may begin by helping the child to interact
with various sensory experiences in the
 FEEDING DISORDERS AND DEVELOPMENTAL DISABILITIES/KLEINERT
environment without reference to food. The child
then begins interaction with food, without
requiring the child to eat it or put it in his or
her mouth, and then finally eating the new food is
introduced. In other approaches, the therapy may
begin with foods that very closely approximate
those the child already accepts and adding those
foods that vary only a very little bit to the diet. So if
a child will eat a crunchy cheese puff already, then
other crunchy foods may be introduced. In
another approach, the child is given his or her
preferred food and then offered others to feel,
touch, and so on. Then he or she is offered food
that is very similar to his or her preferred foods to
try. These new foods may be the same color or
texture as the preferred foods.40–42
There are also popular feeding approaches
used currently that combine elements of both
neurodevelopment- and sensory-based disor-
ders. Limited empirical evidence exists for
some of the approaches to food aversion that
are in use today. The ASHA Portal (http://
www.asha.org/practice-portal/) provides sys-
tematic reviews of feeding approaches for the
reader to employ when determining which
approach may best suit the needs of a particular
child with DDs and feeding disorders.
Another current model for feeding interven-
tion is the behavioral approach to food aversions
often utilized with in children with autism spec-
trum disorder. Such approaches have become
commonly reported in the literature on pediatric
feeding and come from the disciplines of psychol-
ogy and behavior management. Feeding is viewed
as a behavior that can be shaped by systematic
teaching. Systematic analysis of food types, feed-
ing behaviors, caregiver behaviors, and level and
type of food resistance are analyzed, though the
etiology or cause of the food aversion or feeding
problem may or may not be always be considered
in these approaches.43–45 Strategies include sys-
tematic presentations, positive reinforcement,
and caregiver training, and some methods include
negative reinforcement or removal as well. Al-
though these approaches may well have a place in
a pediatric feeding treatment, careful analysis is
needed before behavioral approaches alone are
selected, especially with children who have severe
DDs and may not be able to communicate their
preferences, dislikes, wants, hunger, sensory is-
sues, motor limitations, and so on. Children with
123
severe DDs must be provided with some under-
standable form of communication to participate
in any feeding program.
EVIDENCE BASE FOR FEEDING
INTERVENTIONS
The term feeding disorders is a broad one, which
makes it difficult to clearly report the findings of
evidence to support interventions. Morgan et al
completed a systematic review of oropharyngeal
dysphasia and neurological impairment for The
Cochrane Review in 2012.14 Randomized con-
trolled trials and quasi-randomized controlled
trials were reviewed. Three outcomes were ana-
lyzed: a change in function of the oral pharyngeal
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mechanism necessary for feeding, presence of
pulmonary illness, and diet tolerated or taken.
In addition, changes in the child’s growth, par-
ticipation in meals, and parental stress were also
reviewed. Findings indicated that “there is
currently not enough high-quality evidence . . .
for any particular type of oropharyngeal dysphasia
intervention in this population of children.”
Additionally the authors reported that “there is
an urgent need for larger-scale (appropriately
statistically powered), randomized trials to evalu-
ate the efficacy of interventions for oropharyngeal
dysphagia.”14 Sharp et al completed a systematic
evidence review of literature on pediatric feeding
disorders, which focused specifically on “severe
food refusal and selectivity.”15 Only studies that
demonstrated strict experimental control met the
criteria for inclusion in this review. The authors
found that in the studies that met these criteria, all
studies included behavioral intervention; “no
well-controlled studies evaluating feeding inter-
ventions by other theoretical perspectives or
clinical disciplines” met such criteria. The results
of this review indicated that behavioral interven-
tion was “associated with significant improve-
ments in feeding behaviors”; however, a review of
the studies included in the analyses were primarily
generated from fields of behavioral interventions
or psychology. Reviewed studies required an
“experimental design to investigate treatment
outcomes, including the use of a control group
with designs or experimental single-case research
methodology (e.g., changing criterion, reversal,
alternating treatments and multiple baseline.”15
Such research design is optimal to show
124 SEMINARS IN SPEECH AND LANGUAGE/VOLUME 38, NUMBER 2
effectiveness of interventions; however, designs
that include an untreated control group or re-
moval of intervention can raise ethical challenges
when providing treatment to children with severe
DDs. This may account for the paucity of litera-
ture that Sharp et al cite in areas outside of
behavior interventions. In addition, group designs
and randomized placement require a relatively
homogeneous population, which is not typically
seen in the population of children with severe
DDs and severe oral feeding disorders.
CONCLUSION
This article presents current information regarding
assessment and intervention for pediatric feeding
disorders in children with severe DDs. Though
there are multiple resources and approaches to
assessment and intervention in this area, there are
few standardized procedures in place. Factors
common to successful interventions reported in
the literature include systematic or clearly defined
protocols, parent involvement and carryover,
intensive interventions that may take place in
the inpatient setting, and interdisciplinary in-
put.20,44,45 However, a stronger evidence base for
effectiveness of the many interventions currently in
use is needed. It is difficult to say, with any level of
certainty, which approaches are most effective for
which type of pediatric feeding disorder at this
time. Indeed, perhaps a systematic integration
of neurodevelopmental, sensory, and behavioral
approaches to pediatric feeding disorders is
indicated in light of the multiple etiologies and
variations seen in the DD population. Future
emphasis on more standardized classifications for
feeding disorders in the DD population, standard-
ized descriptions of relative severity of disorders,
and clearly defined programmatic descriptions of
assessments and interventions are all needed.
Interprofessional research at the clinical level and
collaborative training of clinicians and researchers
may be the path to addressing these vital needs.
DISCLOSURES
Jane O’Regan Kleinert receives a salary from the
University of Kentucky. Thirty percent of her
work is supported by a grant from the Kentucky
Department of Education. Additionally, she
receives honoraria for state and national
presentations. There are no nonfinancial
conflicts to disclose.
2017
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