city research online · 200715), and the graz model in austria, (scheertrabi et al, 200616)....
TRANSCRIPT
Harding, C., Faiman, A. & Wright, J. (2010). Evaluation of an intensive desensitisation, oral
tolerance therapy and hunger provocation program for children who have had prolonged periods of
tube feeds. International Journal of Evidence-Based Healthcare, 8(4), pp. 268-276. doi:
10.1111/j.1744-1609.2010.00184.x
City Research Online
Original citation: Harding, C., Faiman, A. & Wright, J. (2010). Evaluation of an intensive
desensitisation, oral tolerance therapy and hunger provocation program for children who have had
prolonged periods of tube feeds. International Journal of Evidence-Based Healthcare, 8(4), pp.
268-276. doi: 10.1111/j.1744-1609.2010.00184.x
Permanent City Research Online URL: http://openaccess.city.ac.uk/3573/
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An evaluation of an intensive desensitisation, oral tolerance therapy and hunger
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Abstract.
Background: Some children with early feeding difficulties may require
nasogastric, (NG) tube feeding or insertion of a percutaneous
endoscopic gastrostomy, (PEG) from a young age. A small cohort of
these children can develop severe oral aversions that can delay the
re-introduction of oral feeding. Multi-disciplinary approaches that
provide an intensive approach are deemed the most effective
method of intervention to reduce NG and PEG dependency.
Method: Two children and their parents received an Intensive
Approach to reduce PEG feeds, (Child A and Child B), whilst one child
and her parents elected to receive a Traditional Feeding Clinic
Approach, (Child C). The mean age of the participants was 4 years 4
months.
Results: Child A initially took 500 kcal (440% daily nutritional
requirement) via her PEG, and 750 kcal (60% daily nutritional
requirement) orally one week prior to the intensive programme, and
Child B took 1200 kcal (100% daily nutritional requirement) via his PEG
and O Kcal orally. Three months post the intervention, Child A took
100%all of her nutritional requirements orally, (1300 kcal/ 100% daily
nutritional requirement), and Child B had reduced PEG requirement
significantly to 38% oftook 500 kcal ( 50% daily nutritional requirement.)
via his PEG, and 500 kcal orally. Child C showed no changes in PEG
versus oral intake.
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Children who received the intervention were able to remain
focused on mealtimes for longermore, with fewer instances ofand did
not leavinge the table. Parents altered their language styles post
coaching on the intensive intervention with using fewer reprimands. No
changes with these behaviours were noted with Child C.
Conclusions: Although this was a small pilot study, there are some
strategies used within an intensive multi-disciplinary context that can
enable children to reduce their reliance on PEG feeds significantly.
Introduction.
Feeding, eating and drinking problems (dysphagia) within a
paediatric population are complex and varied, and many children
with such difficulties require multi-disciplinary intervention from
healthcare professionals to overcome these issues, (Puntis, 20081).
Some children may have a more serious difficulty with eating and
drinking that impact on swallow safety. The inability to cope with
eating and drinking safely is referred to as “dysphagia”. Problems in this
area could include the following; inability to manage food effectively
in the oral cavity to create a bolus pre-swallow, difficulties triggering a
swallow, and problems with the mechanics of the swallow action itself.
Some infants and children may have complex difficulties that
can lead to alternative feeding methods such includingas naso-gastric
(NG) tube feeding sometimes leading onto percutaneous endoscopic
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gastrostomy insertion (o PEG) feeding, (2,3,4,5)Cook et al,
1999;Mathisen et al, 2002; Vakil et al, 2006; Bhatia et al, 2009.).
There is a small cohort of children who have a gastrostomy
PEGtube inserted early in their life, but who make progress medically,
(such as children in whom have had chronic reflux has resolved), and
who should no longer require PEG feedingthe tube. These children can
be highly resistant to developing oral feeding feeding and maintain
dependence on PEG feedingskills.
This paper seeks to explore an Intensive Approach within a
Paediatric Gastroenterology Team that developed oral feeding
tolerance with children who had had prolonged periods of tube PEG
feeding. All children who participated had an early history of persistent
infant reflux that impacted on feeding development and the safety of
the swallow. This study will also attempt to consider the rationale for
working with this population.
Prevalence.
Some studies have attempted to quantify the types and range of
difficulties that children may have. Predictions vary, but Babbitt et al,
(19946) report that there are up to 25% of children within a normal
population who experience some eating aversions, and up to 33%
within a developmental disability group. Other studies predict 40% of a
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sample of normal infants will have some degree of feeding difficulty in
the first 15 months of life, (Northstone et al, 20017), and food aversions
have been reported to affect around 4 % of a normal population,
(Wilensky et al, 19968).Food aversions can have a serious impact on a
child’s oral motor development, (Senez et al, 1996; Hawden et al, 2000;
Mathisen et al, 2002), and consequently, early monitoring and
intervention is highly recommended, (Puntis, 2008).
A UK study explored early feeding with 9,360 mothers of infants
born in 1991/1992, aged from 6 – 15 months,(Northstone et al, 2001).Up
to 40% of the sample reported some degree of feeding difficulties by
the time the infant was 15 months of age. Other studies reflect that the
number of children with feeding aversions within a normal population
may be around 4%, (Skuse et al, 1994; Wilensky et al, 1996).
There appear to be key clinical areas where there are increased
likelihood of dysphagia. For example, children who were born
prematurely or those with developmental delays or disorders with an
early history of gastroesophageal reflux disease (GORD),severe reflux
ccan have difficulties establishing successful feeding, (Douglas et al,
1996; Reilly et al ,1996; Mathisen et al, 2002; Vakil et al, 2006; Bhatia et
al, 20093,4,5,9,10). Infants who have GORD are likely to have lower
energy intake, a significant increase in food refusal behaviours, be
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difficult and more demanding feeders and have challenging mother-
child interaction during mealtimes, (Mathisen et al, 2002).
Infants and children who receive tube feeds because of
complex needs are at risk of developing oral hypersensitivities and food
intolerance, due to prolonged tube feeding, (Senez et al, 1996;
Hawden et al, 200011,12). Tube feeding, either NG or PEG feeding can
reduce stress for parents during mealtimes, (Manhant et al,
200913).However, Mathisen et al,(20023) note that parent-child
interaction during mealtimes can be effected. There can be long term
repercussions with weaning off tube feeding due to sensory issues,
(Senez et al, 199611), and reduced feelings of hunger, (Bazyk, 199014).
Consequently, these children are highly likely to develop significant
difficulties in learning to tolerate eating orally. This may have an impact
on the child’s social and emotional development, (Hawden et al,
2000).
Approaches to working with children who have long term feeding
needs.
multidisciplinaryA multidisciplinary approach to persistent
feeding disorders is recommended and where there are a range of
skilled professionals can help to minimise long term and persistent
problems, (Puntis, 20081). Some establishments describe services in
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hospitals using an in-patient multidisciplinary approach for a whole
range of feeding disorders, including food refusals linked to NG and /
or PEG dependence e.g. The Kennedy Krieger Institute, (Darbari,
200715), and The Graz Model in Austria, (ScheerTrabi et al, 200616).
parents feel that tube feeding can enable both themselves and
their child to have an improved quality of life, (Manhant et al,
2009).However, children who have needed tube PEG feeding for a
significant amount of time, but who do not require this any longer may
have difficulties weaning off their tube dependence. Senez (1996)
suggests that therapists should work on the tactile, taste and olfactory
aspects of development for tube feeders, whereas Bazyk (1990) stresses
the importance of allowing tube PEG fed children who are planning to
wean off feeds the opportunity to experience hunger. This may act as
an important trigger in developing opportunities to tolerate oral
feeding.
Douglas (2002) critiqued various approaches used that deal with
food refusal. Due to the complex nature of feeding problems and the
various aetiologies involved, it is important to reflect on a range of
theoretical models linked to each child’s individual needs. Douglas
recognises the fact that parental support and a mixture of
psychological and therapy approaches, (e.g. messy play), are
essential aspects in intervention with this population. Parental support
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may involve specific coaching and feedback during mealtimes to
provide confidence to ensure appropriate strategies are implemented.
Food aversion is often considered to be primarily a behavioural
issue, with a likely organic origin, and many approaches for dealing
with food refusal are thus behavioural in design, (Freeman et al , 2001 ;
Douglas, 2002; Kelley et al, 2003 ; Ahern, 200617,18,19,20). and
therefore some researchers have chosen behavioural approaches to
remediate food refusal eating disorders. Approaches may include
stimulus fading, giving contingent positive reinforcement and making
food refusal behaviour non-functional, (Freeman et al, 1998). Single
case studies, (Markell et al, 2001; Kelley et al, 2003),focus on specific
shaping behaviours and training to encourage children to eat more,
but results are not clear as to maintenance effects. Ahearn et al, (1996)
developed an in-patient programme for three children with a range of
food aversions. All made improvements with physical guidance and
non-removal of the spoon. Clear definitions of mealtime behaviours
were given, e.g. acceptance, negative vocalisations, expulsion,
disruptions, and self-injurious behaviour and these decreased as the
intervention progressed. Follow up improvements were noted for two
children up to10 months.
A few studies have attempted to evaluate interventions to
evaluate in-patient interventions to wean children onto oral feeding
from prolonged tube PEGtube feeding., (Blackman et 21,22,23,24al,
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1987 ; Byers et al, 2003 ; Burmucic et al, 2006 ; Kinderman et al,
2008)).These studies cover a wide range of ages, (from 9 months to 5
years, 5 months), and a wide range of aetiologies. Stays of up to 24
days have been reported, (Kindermann et al, 200824), and average
times to wean off NG tube feeding is reported as being 9.1daysbeing
9.1days, (Kindermann et al, 200824), 11.4 days average for PEG fed
children, (Byers at al, 200322), and for the two cases in the Burmucic et
al (200623) study, the child fed by NG tube taking 7 days, and the child
with a PEG taking 13 days. However, limitations of these approaches
include; disruption to family life and routines and unnecessary
hospitalisation. Actual protocols outlining the interventions are also
unclear.
An out patient study was carried out by McGrath Davies et al,
(252009) for 9 PEG fed children with a mean agae of 27.3 months;
(range; 7 months to 52 months). A key element of this programme was
“pain rehabilitation” with use of medication, the rationale being that
feelings of pain during feeding may contribute to significant food
aversions. This was an out patient study lasting 14 weeks, with 9 out of
the 10 participants feeding orally at the end of the programme. Eleven
children with mild to severe learning disabilities participated in a
programme to reduce dependence on tube PEG feeding, (Blackman
et al, 1987). Staff carried out the intervention with the children, not the
parents. It was not clear as to what the level of parental support was
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during and post the process. The range of children within the group
had with very different feeding disorders and needs, and therefore it is
difficult to draw specific conclusions and possible strategy
management skills to be able to replicate it. In addition, it was stated in
the study that two of the children had significant swallowing issues post
the study, (one of whom died due to a choking episode during
eating).Consequently, the results need to be treated with caution
because of the types of disorders the children within this group had.
Two studies have attempted to define in more detail their
approaches. Burmucic et al, (2006) evaluated tube weaning with two
children with Alagille syndrome, (2 years and 4.5 years).This paper
described the intervention schedule, (an in-patient approach), and the
role of each professional, including developmental psychology and
speech and language therapy, (e.g. oral –motor stimulation).
Interestingly, both children lost weight when beginning the programme,
but gained weight as they progressed. One child weaned successfully
in 7 days, the other in 13 days. Kindermann et al, (2008) worked with
ten children, aged 9 – 21 months over a period of 12 days where
children were admitted as in-patients. This study also included specific
inclusion criteria as did the Burmucic et al, (2006) study. These criteria
included the following; team agreement that the child would benefit;
exclusion of significant organic issues and stable oral motor skills with no
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aspiration. Children who were at risk of aspiration were excluded.
Outcomes for the Burmucic study stated that “normal feeding
behaviour and stabilization of body weight were established” for both
children, (p935), but there is little information on parental feedback
and longer term outcomes. Kindermann et al, (2008) demonstrated
success with nine out of ten of the children eating orally. All children
were eating post 1 week of intervention with a mean of 9.1 days,
(range 4 – 24) to wean off tube. The children were re-evaluated at 3
months and six months. At 3 months children maintained their skills. At 6
months post the intervention, eight out of ten remained on full oral
feeding.
Other studies have also attempted to define a specific
approach when dealing with this population, (Byers et al, 2003;
McGrath Davies et al, 2009). Byers et al, (2003), recruited 9 children with
a mean age of 3.1 years, (range 1.8 – 5.5 years), on an in-patient
programme which lasted an average time of 11.4 days. The
programme involved largely behavioural therapists and psychologists
coaching parents using behavioural approaches. On discharge from
the programme, 44% of the population had weaned completely from
gastrostomy feeding with maintenance effects noted. McGrath Davies
et al, (2009) also carried out a tube weaning programme with nine
children with a mean age of 27.3 months; (range; 7 months to 52
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months).Assessment of oral motor skills was carried out to eliminate
aspiration risk. Unlike other studies, this paper clearly defined the team
involvement. As part of the intervention, pain rehabilitation was
implemented with use of medication, the rationale being that early
feelings of pain during feeding may have caused a strong association
with mealtimes, and therefore contributed to significant food aversions.
This was an out-patient study lasting 14 weeks, with eight out of the nine
participants feeding orally at the end of the programme.
Background and rationale to the study.
The studies mentioned have small samples by nature of this
specific population of children. This study attempts to define a rationale
for this population that could be a discussion point in providing a more
consistent approach to these children and parents, and hopefully lead
to further studies and investigations to exploreing key themes more
rigorously. At present, there is no specific recommended package of
care prescribed that demonstrates the most effective intervention for
children who have prolonged NG or tube PEG feeds but who have the
oral and pharyngeal capability to take an oral diet.
A number of studies *** outline prolonged inpatient stays for
children whilst participating in tube weaning programmes. Stays of up
to *** days in a hospital setting are reported in the literature. Although
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the reported positive outcomes are significant, limitations of
inpatient/institutional programmes include:
staff carrying out interventions with the parental role being
diminished.
extensive “down-time” where intervention is not possible, for
example, overnight where no feeding occurs.
Cost and training implications for small cohorts of children. If a
programme is provided 24-7, then numerous additional staff
require training and support to ensure consistency of approach
in evenings and weekends when the core “feeding team” is less
likely to be present.
Disruption to family life, including at least one parent usually
“rooming-in” with the child; exacerbated care demands in
families with siblings; disruption to education if child in
nursery/school.
PEG weaning occurring in a non-naturalistic environment and
increased risk of hospital acquired infections.
PEG weaning success has also been reported following long term
outpatient programmes. Weekly intervention for up to ** months have
been reported. This is a valuable model to consider, however the
impact on the family of committing to travelling weekly, often over
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long distances to tertiary centres, at least in our experience, often
resulted in families not being able to access such support.
This pilot project has attempted to evaluate an intensive five day
group intervention where children with food aversions who need to
wean off tube PEG feeds received a multi-disciplinary out- patient
therapy package of intervention at an inner city hospital. Families were
considered core to the team and directlywere directly involved in
carrying out interventions from day 1. The programme was designed
so that parents/carers were supported by the multidisciplinary team for
one meal out of three each day; with daily advice to enable repetition
of strategies in their home environment. This was compared with a
parent and child who opted for the traditional feeding clinic approach
that involved individual consultations.
Method.
Participants.
This study recruited five children aged from 3 years 9 months – 4
years 8 months from the paediatric gastroenterology caseload at an
Inner City Hospital. Given the highly specific nature of the difficulties
these children have, gaining a large sample was challenging., hence
the small sample size. Two of the children were excluded from the study
as both were unwell at the time of the interventions being offered.
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Two children and their parents / carers elected to receive an
Intensive Approach, (Child A and Child B), whilst one child and her
parents/carers elected to receive the Traditional Approach, (Child C).
The mean age of the participants was 4 years 4 months, (range 3 years
9 months – 4 years 8 months).The mean age of the surgical placement
of the tube PEG was 8.3 months, (range 8 months – 9 months). All
children had had NG tube feeding commence in the first month of life.
Put Table 1 about here.
Ethical approval was gained form the local NHS Committee and
City University, London.
Inclusion Criteria.
Inclusion criteria were as follows:
1. Children participating had to be known to the hospital
gastroenterology team, and aged between 6 months – 5 years
of age.
2. Children participating should not have had any illnesses relating
to aspiration over the last year, and have highly competent oral
motor skills as assessed using the Paediatric Oral Skills Package –
POSP ,(26Brindley et al 1996 ; Table 2).
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3. Children participating would have had clear evidence such as
videoflouoroscopy data to indicate that they had a safe swallow
and no other significant risk factors that would effect the
development of full oral feeding.
4. General health with of participating children would be judged
by doctors paediatricians involved to be robust enough to
sustain a progression to full oral feeding during a programme
that included hunger provacationprovocation.
5. Maintenance of adequate weight during tube PEG feeds for the
past year.
6. Children participating would have competent cognitive and
language skills that did not fall below the first standard deviation
in assessments.
Put Table 2 about here.
Setting and materials.
The interventions offered were as follows:
1. Traditional Approach.
The child and her parent who elected this approach received an
individual monthly 30 minute multidisciplinary feeding clinic
appointment (dietitian, speech and language therapist, consultant
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gastroenterologist, psychotherapist). Sessions includedInformation
collected included growth assessment, monitoring of tolerance to
enteral feeding and dietary assessment, as well as a review of
medications and goal setting relevant to the child’s immediate needs.
2. Intensive Approach (intervention).
Children and parents who elected to receive this approach were
offered a five day intensive programme of daily group intervention.
This involved Monday to Friday outpatient attendance of 1.5 hours at
an inner city hospital, but was based within the hospital playroom and
school room.
Assessment pre-intervention: baseline assessments for all children
of height, weight and amount of water/feed via PEG were recorded
and a paediatrician assessed the child’s general health. A 7 day food
diary was also completed by the parents and carers. These were
analysed by a dietitian using Dietplan computer programme.
Children’s nutritional requirements were calculated using dietary
nutrient RNIs (Reference Nutrient Intakes). Each child was videotaped
during a mealtime. Analysis of videos included parent-child interaction
strategies, child mealtime behaviours, and volume of food/drink taken
orally. This and provided information to inform goal setting for the
intervention week. All children had their oral motor skills evaluated
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using the Paediatric Oral Skills Package (POSP), (Brindley et al 1996) to
ensure they met the inclusion criteria.
Assessment – acceptance to intensive programme: Three days
prior to day one of the intervention week each of the children in the
intervention group were individually assessed for a reduction in tube
PEG feeds. prior to the commencement of interventions. This was
designed to stimulate hunger in the children by the start of the five day
intervention. The following matrix was used to inform PEG feed
reduction:
If child receiving more than Child A already met over 50% of her
total energy EAR (Estimated average requirement) with orally
nutrition ; then discontinue PEG feed.
If child receiving 20-50% total EAR orally, then reduce PEG feed
by 50%.
If child receiving less than 20% total EAR orally, then reduce PEG
feed by 30%.
The same volume of water was replaced via PEG to limit the risk of
dehydration for the 3 days pre-intervention. During the intervention
week the volume of water was reduced according to clinical
assessment by the dietitian which included; oral fluid and food intake,
and clinical observations such as number of wet nappies/toilet visits.
Childso A’s tube PEG feeds were stopped prior to the intervention
week. and instead the same volume of water was given via PEG to limit
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the risk of dehydration for three days pre-intervention. Child B’s PEG
tube feeds were reduced by 30% (400kcal). only as pre intervention less
than 10% of his total nutrition came from oral intake. The reduction in
tube feeds was supplemented by an increase in water (400ml) via tube
pre intervention to remove risk of dehydration.
Parents agreed to keep Food Diaries for seven consecutive days
prior to and during the intervention. These were analysed by a dietitian
using Dietplan computer programme. An average of the daily oral
intake was determined from this programme.
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Intensive Approach Methodology (intervention)
These daily sessions were 1.5 hours long and involved multidisciplinary
assessment and intervention as follows:
1. Greeting time: Children would arrive with their parents /carers and
lunch boxes/picnics would be placed unpacked on a trolley.
2. Mat time: Children would be informed of the routine of the session
with a visual timetable. Children then participated in , and would also
be introduced to basic oral stimulation and desensitisation work with
the speech and language therapist through “vegetable of the day”.
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This involved biting, licking, smelling, sensory and imaginative play and
exploration using raw foods. This activity was developed by the ,
(speech and language therapist and carried out/led by any of the
multidisciplinary team present. dietitian present to provide support).
Rationale: Some researchers suggest that children experience tastes
and textures and gain sensory stability and development from these
experiences around 6 -9 month level, and that should they miss these
experiences, then sensory integration and development will not take
place. (Illingworth et al, 1964; Clark et al; 1990; Lawless, 1985;Senez et
al,199611, 27,28,29). This task is rooted in this assumption, and enables
children to become desensitised to and experience tastes and textures
as well as practice skills such as chewing in a fun, non-threatening
activity. , (11,Winsten, 1983; Langmore, 1994; Gilmore, 2003; Senez et al,
199630,31,32,).
. This activity allows adults working with the child to focus on oral
desensitisation and practice functional movements such as chewing in
a play context. Oral desensitisation therapy is rooted in the acquired
oral-motor disorders literature. However, the assumption that the
alignment and integration of motor and sensory skills is an important
aspect considered within paediatric therapy approaches, and as such
forms the foundation for activities such as this one, (Winsten, 1983;
Langmore, 1994; Gilmore, 2003; Senez et al, 1996).
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3. Drink time: Water only, (up to 50mls – 100 mls in a cup, no bottles or
cartons).
Rationales: Water can have an impact on satiation, so amounts were
limited pre-eating so that children could potentially take in more solid
food, (Lappalainen et al, 199333). This was encouraged as iIt was
noted in pre-intervention assessment that all children were distracted
through out mealtimes with opening cartons and bottles, playing with
lids and straws. Drink time was an opportunity to decrease distractions
and encourage independence by introduction of a cup.
4. Cooking / messy play activity: Children hadwould have a specific
play task around messy play activity e.g. making fruit kebabs, fruit trifle,
etc, to enable them the opportunity to experience positive feelings
about food through play. This activity was led by the speech and
language therapist and play specialist. During this time, parents
/carers would leave the room and spend time discussing concernsand
setting/ clear goals for the next 24 hours, etc with the psychology,
speech and language therapy and dietetics staff. Use of information
from the video recordings such as e.g. specific language to use with
the children, (for example, decreasing not using reprimands, modifying
questioning style when food is not eaten), suggested serving
sizeamounts of food to target, etc, behavioural management
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techniques (such as how to react if the child left the table). was
shared.
(One speech and language therapist and play specialist
remained with the children for messy play, and one speech and
language therapist joined the dietitian and clinical psychologist with
the parents for discussion of goals).
RRationales: Experiencing tastes and textures, oral desensitisation and
encouraging fun with food remained a rationale as per activity 2. In
addition; it was noted during pre-intervention assessment videos that all
children were exhibiting avoidance or distraction behaviours including
fixating on opening/unwrapping/preparing food to the detriment of
actually eating any. Additionally parents used “language teaching”
strategies at mealtimes including requesting children named foods and
their attributes, at times disrupting the sequence of the mealtime .by
inadvertently interrupting a child as they were about to take a bite.
Rationale for this activity therefore included an opportunity for children
to be in a language rich learning butlearning but distraction free
environment where they could also practice skills for independence
including using utensils and tools and preparing food. It would be
expected that at mealtimes children and parents/carers would eat in
a distraction-free environment with minimal preparation activity
occurring at the table.
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This activity allows adults working with the child to focus on oral
desensitisation and practice functional movements such as chewing in
a play context. Due to prolonged periods with no or minimal oral
feeding, children often develop challenging behaviours associated
with eating as well as oral hypersensitivities. Oral desensitisation therapy
is rooted in the acquired oral-motor disorders literature. However, the
assumption that the alignment and integration of motor and sensory
skills is an important aspect considered within paediatric therapy
approaches, and as such forms the foundation for activities such as this
one, (Winsten, 1983; Langmore, 1994; Gilmore, 2003; Senez et al, 1996).
5. Washing hands.
6. Plating Up and Eating: Parents/ carers re-entered the room at this
point and prepared the child’s meal. They were expected to eat with
their child. Team members made sure that parents only offered their
child a did not put on how much they wanted child to eat, but how
much is realistic and achievable serving size. The goal was for children
to have experiences of success, i.e. finishing a plate, and having the
opportunity to go back for more if they wanted to. In addition, to
reduce children becoming too full from just water, only ¼ of a cup of
water was allowed during the meal. If more was requested, then they
would have to have finished their plate of food first. Children would be
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given specific coaching and modelling from their parents, who in turn
were provided with verbal support from the multidisciplinary team as
required(speech and language therapist and dietitian present to
provide support).
7. Washing hands.
87. Good-bye. Parents were offered the opportunity to discuss the
mealtime outcomes and consequently modify goals for the pending
evening meal and breakfast if required. Children were invited to play
and wait in the playroom with play / support staff if there were any final
specific issues pre-the next session to be discussed with parents.
Assessment Data collection and agreement.
At the beginning of the intervention, baseline assessments were
carried out. These involved height, weight and amount of oral versus
tube feeding the children experienced, and number of days taken to
achieve full oral feeding. A food diary was also completed by the
parents and carers at each stage of the process. All children
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participating had their oral motor skills evaluated using the Paediatric
Oral Skills Package (POSP), (Brindley et al 1996) to ensure they met the
inclusion criteria.
Day 5 of intervention: Repeat At the end of the intervention, the
same assessments of height, weight and amount of water/feed via
PEG were completedrecorded for children receiving the intensive
intervention. Food diary records for the intervention period were
analysed by a dietitian using Dietplan computer programme.
Assessment with a further follow up at one month and 3 months:
Repeat assessments of height, weight and amount of water/feed via
PEG were completed for all childrento evaluate maintenance effects.
A 7 day food diary was also completed by the parents and carers and
analysed by a dietitian using Dietplan computer programme. Each
child was Assessments were video recorded during a mealtime at both
reviewsat each stage.
Video recordings of mealtimes
Independent blind-rating of the video recordings took place and
was carried out by a health care professional who did not participate
on the intervention to validate the results. The inter-rater agreement
was 89%, (Agreement/Agreement x Disagreement x 100). Discussion
took place where some of the meanings were unclear.
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Video analysis was undertaken for each child pre-the
intervention, at one month and at three months post the group and
involved distinct areas of observation linked to papers reviewed within
the literature review. Child The rresponses were coded and observed
for the children included:
Initiation of language;(hypothesis; a child may initiate more
language when more relaxed during a mealtime),. therefore those
in the Intensive Approach may initiate more after the intervention);
ignoring of parent;(hypothesis; the child may ignore the parent less
once he/she has received some intervention to support feeding);
leaving the table;(hypothesis ; children receiving the Intensive
Approach may leave the table less as they become more
confident with eating).
The responses observed and recorded for parents /carers included:
Reprimands;Reprimands; This included negative parental language
associated directly with eating, For example “stop messing; don’t
play with it” ( hypothesis ; with coaching, the parents may use fewer
reprimands over time during mealtimes);
coaxing; This included parental language associated directly with
encouraging the child to eat. For example, “put it in your mouth;
take a bite; have some yoghurt now” (hypothesis; post with
coachingtraining, the parents would use lessmodify the amount of
directive coaxing needed to encourage their child to eatt );
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commenting This included general parental language related to
the mealtime, but neither directive nor reprimanding in nature. For
example, “mmm that looks yummy; oh you took a big bite”.
(hypothesis; parents should reduce their feelings of anxiety and
therefore make more positive general comments during mealtimess
about their child’s mealtime behaviour).
Descriptive data was collected for weight and height for all
children. Changes in oral versus gastrostomy tube intake were
calculated. Child and parent language and behaviours during
mealtimes were analysed descriptively. Children’s nutritional
requirements were calculated using dietary nutrient RNIs (Reference
Nutrient Intakes).
Results.
The results summarising outcomes for the children include weight
and height measures, changes in oral and gastrostomy PEGtube
feeding, and changes in the use of language by children and parents
during mealtimes.
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Oral Intake vs PEG intake: These Rresults show that the children
who received the Intensive Approach, (Child A and Child B),
demonstrated significant increases in oral intake (percentage of
estimated average requirement) over the study period orally over
three months. Child A was managing 66% of requirements orally at the
beginning of the intervention period, 91% by the end of the
intervention week, 96% at week 6, and 100% at 3 months. PEG feeding
was stopped for Child A at the beginning of the intervention week and
was not resumed. Prior to intervention Child A’s progress was such, that
she did not require any gastrostomy feeds at 3 months. Child A did not
restart tube feeds and supplementary water via the tube was
discontinued. Child B B required 100% of his feeds via had a further
reduction in tube PEG; this was decreased by 400kcal on
commencement of the intervention, and feeds were decreased by a
further 200 kcal mid-way through the intervention week as oral intake
increasedimproved. Child C, who elected to receive the Traditional
Approach, did not demonstrate any significant changes in percentage
of estimated average requirement orally over three months.
Put Table 4 about here.
Weight: All three children demonstrated changes in weight
during the intervention period. Child A increased her weight by 0.2 kg,
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from 12.5 – 12.7 kg, (2-9th centile), during the Intensive Approach week.
She had a loss of 0.1kg at the 6 week review which likely to be due to
her receiving on average 91-96% average daily requirements orally,
with no PEG feed “top-up”. coincided with a drastic reduction in
gastrostomy tube feeds. At 3 months post the Intensive Intervention,
Child A’s weight increased to 13.5kg, (9th centile). At this stage, she was
taking all of her nutrition orally.
Child B maintained weight during the intervention period at 12kg
(, (0.4th centile)). He lost weight at his 6 week review to 11.7kg,
dropping to (below 0.4th centile). T and this was attributed to an illness
that he had had at the time. At Time the 3 month review4, his weight
had increased recovered to 12.2kg and he was continuing along
above the Time 1 level to 12.02kg, (0.4th centile).
Child C maintained growth appropriately (12.5 -13.5kg across the
intervention period) which was expected as she maintained 100%
estimated average daily requirements through a combination of PEG
and oral feeds.
Put Table 5 about here.
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Height: All children showed changes in height over the three
month period that correlated with what was expected height gain
along their respective centiles on the UK growth charts..
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Parent Child Interaction: It was hypothesised that following the
intervention, mealtimes would consist of fewerthe number of
reprimands, a change in the number of direct coaxing or prompting
the child to eat, and a more naturalistic balance of general
conversation. It is impossible to make generalisations with a sample
size this small. It was apparent following the pre-intervention video
taping session that the parents of each child approached mealtimes in
different ways; and that modifications in parent-child interaction should
be applied in both cases, but with quite different goals. Goals for Child
A’s parents included increased awareness of child initiations, to follow
the child’s lead, less prompting and coaxing, and decreasing the
amount of “chat” in order to allow more time to chew.
Conversely, for Child B, parental goals included decreasing
“following the child’s lead” and increasing parent direction and
coaxing to provide more specific feedback, decrease questioning
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(“do you want any more?”) to be replaced with increased
commenting (“mmmm that looks fun”).
The most significant change in parental behaviour would
decrease with coaching. Few Reprimands were used used by Child A’s
parents was a considerable reduction in the direct coaxing of the child
to eat. This followed coaching during the intervention week that
included “following the child’s lead” and taking the focus away from
“prompting” to eat. There was also a marked decrease in
commenting. .
The most significant change in parental behaviour used by Child
B’s parents was a dramatic increaseChild B’s parent demonstrated an
increase in commenting behaviour throughout the study period,
alongside a considerable increase in coaxing and decrease in
reprimands by the 3 month mark., then a final decrease in Reprimands
during the 3 month period.
Child C showed an even pattern of parental use of reprimands
and commenting during the meal with no major changes. There was
an increase in commenting noted at the 3 month review and no
reason for this increase has been proposed.The original hypothesis
speculated that there would be greater changes with use of
Reprimands, although this has not been indicated in this study.
Coaxing a child to eat food verbally was considered to be a
communication aspect that would decrease during and after the
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intervention. This occurred with Child A’s parents, although Child C’s
parent demonstrated less change. Child B’s parent showed an
increase in Coaxing, an opposite effect to the hypothesis.
Commenting, i.e. making positive comments about the
child’s mealtime experience, or how they were functioning, e.g. “Good
chewing”, was considered something that would increase during and
post the intervention. Interestingly, Commenting decreased for Child A,
increased for Child B and was an equal pattern for Child C.
It was noted following the initial video-taped mealtimes that
considerable variation in communicative styles and behaviours were
used by parents in a 30 minute time-frame. Reprimands ranged from 1-
20, coaxing from 24-42 and commenting from 24-57 occasions. Great
variation remained at the 3 month session, however what changed for
child A and B was the proportion or balance of each of the types of
parental behaviour used.
Put Table 47a/b/c about here.
Child Behaviours:
Child A demonstrated a net decrease in all behaviours of It was
hypothesised that during and post the intervention, children would
iInitiating e more language, ignoring parents and leaving the table. It
was hypothesised that Child A may increase initiation of language
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following the intervention, however it should be noted that Child A’s
parents had dramatically reduced the amount of language used at
mealtimes in order to allow Child A sufficient time to focus on chewing
and swallowing. A decrease in all verbal output from Child A therefore
correlates with a calmer, quieter mealtime environment.
Child B demonstrates marked and dramatic changes in ignoring
behaviours and leaving the table. There was a peak in initiation
behaviours at the 6 week review. with their parents. All children
demonstrated variable levels of Initiation, with no distinct pattern being
evident.
An assumption was made that children receiving the
Intensive Approach would Ignore their parents less and engage with
them more during the meal. Child A and Child B showed a decrease in
the number of times they Ignored their parents. Child C who received
the Traditional Approach showed a more even pattern across all areas
measured.of Ignoring.
Focus on parent-child interaction strategies and styles during the
intervention week resulted in sustained changes in interaction patterns
in the 2 intensive study children. There were no changes in parent-child
interaction strategies in the child who did not receive the intensive
programme. It was thought that after the intervention, children
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would leave the table less. This was the case for Child A and
particularly for Child B who both received the Intensive Approach.
There was no specific change throughout the three month period of
the study in the number of times Child C left the table, (Traditional
Approach).
Discussion.
This particular pilot project investigated supports the use of
specific strategies to enable change to occur for children who have
had long term tube PEG use. These were: : i) clear components of
parent coaching based around language use to encourage the child;
ii)developing parents’ perception of the food amount the child could
manage orally and how to deal with this practically and emotionally;
iii) involving the children in strategy management through visual
prompting and learning from others; iv) modelling and
support;vsupport) and v) hunger provocation combined with as well
as clear role definition within the team.
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The results indicate that weight and height were stable and
maintained along respective centiles on the growth charts for all
children. Both Child A and Child B dipped below their usual centile at
the 6 week review, but both recovered by the 3 month review. Child C
maintained growth as expected as there were no significant
reductions in PEG volume at any time. throughout the three months for
all three children. Child A had an increase in weight at the end of the
Intensive Approach, (from 12.5kg/ 2 – 9th centile to 12.7kg / 2 – 9th
centile), but at 6 weeks, (Time 3), displayed a slight loss of 0.1kg.
However, at Time 4, three months post the Intervention, Child A’s
weight had increased to 13.5kg, (9th centile). At Time 3, Child A had
recently moved onto taking all of her nutrition orally, and the slight
drop in weight at that time was attributed to this. Child B did increase
his weight from 12.0kg (0.4th centile), at Time 1 to 12.02kg, (0.4th centile),
at Time 4. A weight loss to 11.7kg at Time 3 was attributed to a cold
virus he had had just before follow up, and his mother reported that his
appetite had been affected. Child C showed a high increase in
weight, from 12.5 kg at Time 1 to 13.5kg at Time 4.
This study proved successful at maintaining significant decreases
in the volume of PEG feed required by both of the children in the
intensive programme group. The children entered the study at quite
different stages of the “weaning from tube” process. Child A had been
requiring 500 kcal via the PEG at entry to the study, whereas Child B
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had been requiring a full 1200 kcal via the PEG. Both participated in
the intensive programme resulting in a decrease of PEG requirement of
500 kcal for child A within the intensive week, and maintained at 3
months, and a decrease of 600 kcal achieved within the intensive
week for Child B, and maintained at 3 months. Child C was still
receiving 50% of her nutrition by tube, 600kcal, with 600kcal orally. Her
increase in weight and the fact that she displayed no weight loss was
attributed to her ongoing use of the tube. Child C’s mother did report
that her daughter had started to eat more of her packed lunch at
school although if she felt that C had not eaten enough orally, then she
still altered how much was taken via the tube.
All children had their average estimated calorific
requirement via tube and orally measured before and during the study
period. Child A had an estimated average frequency of 750kcal orally
at Time 1, and 500kcal by tube, (total = 1250kcal). At Time 4, Child A
was able to take her 1300 kcal required intake per day orally with no
additional tube feeding necessary. This has been maintained, and
Child A no longer has a gastrostomy PEG. tube. Child B still has some
tube feeding, at Time 4 his average daily oral intake was 800kcal with
500kcal received via his tube, (total = 1300kcal). However, although he
still has some tube feeding requirements, he did not receive any
nutrition orally at Time 1. Child C’s PEGtube requirements continued to
be necessary throughout the 3 month project period. , (Time 1;
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800kcal, and Time 4; 600kcal). McGrath Davis et al, (2009) reported a
time period of 14 weeks for 8 out of 10 children to receive full oral
feeding. Within this study, Child A took 12 weeks to reduce to nil by
PEG, and was meeting Estimated Average Requirements orally with no
additional input by week 12. , and Child B took 12 weeks to take
6800kcals orally from previously taking nothing, was taking 750 kcal
orally by week 6; and 800 kcal orally by week 12. Again this was
achieved with no additional input to the 1 week intensive programme..
It is difficult to make an assumption about which strategies
enabled the children to make progress. It could be a combination of
factors linked to sensory play to reduce food phobia, (Senez et al,
199611), developing a sense of hunger between meals, ( Bazyk,
199014), and supporting and coaching the parents, (Douglas,
200218).All children displayed varying levels of texture aversions to
food. The strategy used by the speech and language therapists of
working with food textures to reduce food phobias was beneficial in
this study as with Senez et al, (1996). The consultant and
dietitiandietician with support from the clinical psychologists and
paediatricians coached the parents to enable them to allow children
to experience hunger between meals as suggested by Bazyk, (1990),
and Child A and Child B certainly made progress in changing their oral
intake.
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Parents who received the Intensive Approach changed in their
coaching used a different balance of communicative and
behavioural approaches whilst interacting with their childfewer
Reprimands at Time 4. There was no change for Child C. Coaxing and
Commenting were considered strategies that parents would used
differently to support their child’s eating development. However, Child
A’s parents increased rather than decreased their use of this as a
strategy, and no specific pattern was noted with Child B, or Child C.
Child B’s mother increased in coaxing and commenting when
encouraging B to eat; this could be because he was not really eating
orally at all at the beginning of the study, and that B’s mother was keen
that he maintained oral feeding and therefore continued to prompt
and motivate him. He also had mild oral motor difficulties, preferring
not to chew foods. B’s mother found that reminding B to chew verbally
and commenting on this has successful outcomes for him. Child C’s
mother did not display any specific differences in Reprimands, Coaxing
or Commenting during the project period. A tentative suggestion is that
analysis of parent-child interaction and subsequent discussion during
parental coaching about to reduceing negative comments such as
reprimands during mealtimes, and increase or decrease commenting
and coaxing depending on individual need can have beneficial
outcomes in terms of the amounts children will attempt to make orally.
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The parental coaching used by all professionals to support the
parents in this project was successful as in the literature, (Douglas,
2002).Here, a mix of psychology and therapy approaches in the areas
outlined, (language use, parent confidence in amounts and types of
foods given to the child, etc), had positive outcomes.
Children who received the Intensive Approach showed
differences in leaving the table. Both Child A and Child B showed
improvements in this area, especially Child B. Child B attempted to
avoid mealtimes initially, leaving the table 34 times at Time 1 ,but did
not do so at Time 4. Child C, (Traditional Approach), showed no
specific change in avoiding the meal and attempting to leave from
Time 1 to Time 4.
Children’s behaviour and language such as Iinitiatinged
language and Ignoringignoring the parents’ language were also
evaluated. Child B particularly showed significant changes in a
number of areas with fewer occasions of leaving the table (from 34
occasions to 0 following intervention) and fewer occasions of No
distinct pattern was noted with Initiating throughout the project,
although with Ignoring, Child A and Child B did show a decrease in the
number of time they ignoring ed their parents’ communication during
the meal (21 to 3 occasions). , (Child A at time 1 ignored her parent 7
times, and at Time 4 5 times; Child B ignored his parent 22 times at Time
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1 and 3 times at Time 4. This suggests that the parental
promptingcoaching did had significanthave some value for the
children.
The literature quoted does discuss some specific parent
strategies, although it has already been stated that these approaches
are behavioural in origin, (Ahearn et al, 1996; Freeman et al, 1998;
Markell et al, 2001; Kelley et al, 2003).Such strategies included
supporting parents to use hand over hand prompting with utensils to
help their child participate in the meal, as well as ignoring negative
vocalisations. Benefits in the quoted studies from supporting parents in
this way have been beneficial.
Conclusion.
This study was different because it attempted to define and
provide a rationale for a range of strategies and component parts of
treatment for children with prolonged PEG use used by members of the
team. to facilitate change within an out-patient, non-acute context. In
particular, specific methods were used with success. TheseMethods
included; parental coaching in specific areas; working with food
textures; and enabling children and their parents to deal with changes
in their eating behaviours. and describing therapy approaches by
using a rationale.
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This study does support the fact that good outcomes were
obtained by close multi-disciplinary working. This study also has value in
that it describes component parts of the treatment regime. Of
particular interest is the use of language and communication during
mealtimes and the impact this can have on the child’s ability to
engage with the eating and drinking process. It was hypothesised that
an Intensive Approach using specific strategies would improve
outcomes, and enable children able to feed orally to reduce or wean
off the tube PEG feeding totally. Success was achieved, but as the
sample size was small, it is difficult to generalise these findings to a
larger group.
In addition, the types of children in the literature who have
received interventions to reduce tube PEG feeds have included those
with a range of learning disabilities. Future studies do need to focus on
specific patterns within clinical groups, but within this pilot project it is
interesting to note that all three children had had an early history of
GORD, all three had had early oral-sensory issues, and all three had
had significant difficulties establishing feeding as infants.
The impact of early infant feeding difficulties can chewing be
highly pervasive,pervasive; whilst further research is needed to
replicate the findings in this project it is also clear that the initial stages
of early feeding require further investigation and exploration in an
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attempt to prevent the need for long and unnecessary use of tube
PEG feeds.
Acknowledgements.
The authors would like to thanks the parents and the children
who participated in this study. In addition, they would also like to thanks
the wider members of the MDT especially the clinical psychology team
members. This pilot project would not have been possible without the
support of a Pump Priming Award from City University, London.
Additional thanks also need to be extended to Dr. Mark Furman,
Consultant Gastroenterologist, Dr. Camilla Salveistrini, Consultant
Gastroenterologist and Dr. Nicky Botting, Reader, City University,
London.
Conflict of interests, source of funding and authorship.
The authors declare that they have no conflict of interests.
This pilot project was supported by the local trust and a Pump Priming
Award from City University.
All authors reviewed and contributed to the manuscript prior to
submission for publication.
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References:
1. Puntis JWL . Specialist Feeding Clinics. Archives of Disease in
Childhood 2008; 93: 164 – 167
2. Cook IJ, Kahrilas PJ . AGA technical review on management of
oropharyngeal dysphagia. Gastroenterology 1999; 116:455-478
3. Mathisen B, Worrall L, Masel J, Wall C, Shepherd RW. Feeding
problems in infants with gastro-oesophageal reflux disease: a
controlled study. Journal of Paediatric Child Health 2002; 35 (2)163–169
4. Vakil N, van Zanten SV,Kahrilas P, Dent J, Lones R. The Montreal
definition and classification of gastroesophageal reflux disease: a
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5. Bhatia J, Parish A. GERD or nor GERD: the fussy infant. Journal of
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6. Babbitt RL, Hoch T A, Ed D, Coe DA, Cataldo M F , Kelly KJ,
Stackhouse C, Perman JA. Behavioral Assessment and Treatment of
Pediatric Feeding Disorders. Journal of Developmental & Behavioral
Pediatrics 1994; 15 (4); 278 -291
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provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
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7. Northstone K, Emmett P, Nethersole F and the ALSPAC study team.
The effect of age of introduction to lumpy solids on foods eaten and
reported feeding difficulties at 6 and 15 months. Journal of Human
Nutrition and Dietetics 2001; 14: pp 43-54
8. Wilensky D S, Ginsberg G, Altman M , Tulchinsky T H, Ben Yishay F
Auerbach J. A community based study of failure to thrive in Israel.
Archives of Disease in Childhood 1996; 75: 145-148
9. Douglas J,Byron M . Interview data on severe behavioural eating
problems in pre-school children. Archives of Disease in Childhood 1996;
75: 304-8
10. Reilly S, Skuse D H, and Poblete X. The prevalence of feeding
problems and oral motor dysfunction in children with cerebral palsy: a
community survey. Journal of Paediatrics. 1996 ; 129: 877-82
11. Senez C, Guys JM, Mancini J, Paz Paredes A, Lena G, Choux M .
Weaning children from tube to oral feeding. Childs Nerv Syst 1996 ;
12:590–594.
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provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
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12. Hawden JM, Beauregard N, Slattery J, Kennedy G. Identification of
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18. Douglas J. Psychological Treatment of Food Refusal in Young
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23. Burmucic KT,Deutschmann A, Scheer PJ, Dunitz-Scheer M. Tube
weaning according to the Graz Model in two children with Alagille
syndrome. Pediatric Transplantation 2006; 10: 934 – 937
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M,Douwes AC. Discontinuation of tube feeding in young children by
hunger provocation. Journal of Pediatric Gastroenterology and
Nutrition 2008; 47: 87 – 91
25. McGrath Davis A, Schule Bruce A, Mangiaracina C, Schultz T,
Hyman P. Moving from tube to oral feeding in medically fragile
nonverbal toddlers. Journal of Pediatric Gastroenterology and Nutrition
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26. Brindley C, Cave D, Crane S, Lees J, Moffat V . Paediatric Oral Skills
Package – POSP.1996; Winslow Press
27. Illingworth RS ,Lister J. The critical or sensitive periods, with special
reference to certain feeding problems in infants and children. Journal
of Pediatrics, 1964; 65: 839 – 848.
28. Clark B J, Laing SC .Review of weaning. Journal of Human
Nutrition,1990; 3: 19-26
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29. Lawless H. Sensory development in children. Research in taste and
olfaction. J.Am. Dietetic Assoc.1985; 85: 577-582
30. Winstein CJ. Neurogenic dysphagia. Frequency, progression, and
outcome in adults following head injury. Physical therapy. 1983 ;
63:1992-1997
31. Langmore SE. Behavioural treatment for adults with Oropharyngeal
dysphagia. Archives of physical medicine rehabilitation,1994; 75: 1154-
1160
32. Gilmore R, Aram J, Powell J, Greenwood R. Treatment of oro-facial
hypersensitivity following brain injury. Brain Injury, 2003; 17: (4) 347 – 354
33. Lappalainen R, Mennen L, van Weert L, Mykkänen H. Drinking water
with a meal: a simple method of coping with feelings of hunger, satiety
and desire to eat. European Journal of Clinical Nutrition; November,
1993; 47 (11): 815 – 9
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48
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Ahearn WH, Kerwin ME, Eicher PS, Shantz J, Swearingin W. (1996): An
alternating treatments comparison of two intensive interventions for
food refusal. Journal of Applied Behaviour Analysis No 3 (29) 321 – 332.
Babbitt RL, Hoch T A, Ed D, Coe DA, Cataldo M F , Kelly KJ, Stackhouse
C, Perman JA. (1994) Behavioral Assessment and Treatment of Pediatric
Feeding Disorders. Journal of Developmental & Behavioral Pediatrics
(15)4; 278 -291.
Bhatia J; Parish A. (2009): GERD or nor GERD: the fussy infant. Journal of
Perinatology: 29, S7-S11.
Bazyk S (1990): Factors associated with the transition to oral feeding in
infants fed by nasogastric tubes. Am J Occup Ther 44:1070–1078.
Birch LL, Marlin DW (1982): I don’t like it; I never tried it: effects of
exposure on two-year-old children’s food preferences. Appetite 3:353–
360.
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provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
49
49
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Blackman JA, Nelson CLA (1987): Rapid introduction to oral feedings to
tube-fed patients. Development and Behavioral Pediatrics Vol.8 , No 2.
Burmucic KT,Deutschmann A, Scheer PJ, Dunitz-Scheer M.(2006): Tube
weaning according to the Graz Model in two children with Alagille
syndrome. Pediatric Transplantation 10: 934 – 937.
Byars KC, Burklow KA, Ferguson K, O’Flaherty T, Santoro K, Kaul A (2003):
A multicomponent behavioural program for oral aversion in children
dependent on gastrostomy feedings. Journal of Pediatric
Gastroenterology and Nutrition 37: 473 – 480.
Clark B J , Laing SC (1990): Review of weaning. Journal of Human
Nutrition, 3: 19-26.
Cook IJ, Kahrilas PJ , (1999): AGA technical review on management of
oropharyngeal dysphagia. Gastroenterology 1999; 116:455-478.
Darbari A (2007) Special Needs: Realizing Potential. Feeding disorders
are often misunderstood. Pediatric News : December 2007Daniels S. K.,
Foundas A. L. (2001): Swallowing physiology of sequential straw
drinking. Dysphagia 16: 176-182.
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50
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Douglas J. Byron M (1996): Interview data on severe behavioural eating
problems in pre-school children. Archives of Disease in Childhood 75:
304-8.
Douglas J. (2002): Psychological Treatment of Food Refusal in Young
Children. Child and Adolescent Mental Health Vol (7) No 4 173 – 180.
Evans-Morris S & Dunn-Klein N (2000): “Pre-Feeding Skills: Second
Edition.” Pub. Therapy Skill Builders. Builders
Freeman KA, Piazza CC(1998): Combining stimulus fading,
reinforcement and extinction to treat food refusal. Journal of Applied
Behavioural Analysis, 31: 691-4.
Gilmore R; Aram J; Powell J; Greenwood R. (2003): Treatment of oro-
facial hypersensitivity following brain injury. Brain Injury, 17; (4) 347 – 354.
Gisel EG (1991): Effect of food texture on the development of chewing
of children between six months and two years of age. Dev Med Child
Neurol 33:69–79.
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provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
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Harris G, Booth DA (1985): Sodium preference in food and previous
dietary experience in 6-month-old infant. IRCS Med Sci 13:1177–1178.
Harris G, Thomas A, Booth DA (1990): Development of salt taste in
infancy. Dev Psychol 26:534–538.
Hawden JM, Beauregard N, Slattery J, Kennedy G(2000): Identification
of neonates at risk of developing feeding problems in infancy. Dev
Med Child Neurol 42:235–239.
Illingworth RS ,Lister J(1964) : The critical or sensitive periods, with special
reference to certain feeding problems in infants and children. Journal
of Pediatrics. 65; 839 – 848.
Kelley ME, Piazza CC, Fisher WW, Oberdorff AJ (2003):Acquisition of cup
drinking using previously refused foods as positive and negative
reinforcement. Journal of Applied Behaviour Analysis No 1, (36) 89 – 93.
Kindermann A, Kneepkens CMF,Stok A,van Dijk EM, Engels M,Douwes
AC. (2008): Discontinuation of tube feeding in young children by
hunger provocation. Journal of Pediatric Gastroenterology and
Nutrition 47: 87 – 91.
An evaluation of an intensive desensitisation, oral tolerance therapy and hunger
provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
52
52
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Langmore SE. (1994): Behavioural treatment for adults with
Oropharyngeal dysphagia. Archives of physical medicine
rehabilitation, 75: 1154-1160.
Lappalainen R, Mennen L, van Weert L, Mykkänen H. (1993) : Drinking
water with a meal: a simple method of coping with feelings of hunger,
satiety and desire to eat. European Journal of Clinical Nutrition;
November, 47(11): 815 – 9.
Lawless H. (1985): Sensory development in children. Research in taste
and olfaction. J.Am. Dietetic Assoc. 85: 577-582.
Mahant S, Friedman JN, Connolly B, Goia C, MacArthur C. (2009): Tube
feeding and quality of life in children with severe neurological
impairment. Archives of Disease in Childhood 94: 668-673.
Mathisen B, Worrall L, Masel J, Wall C, Shepherd RW (2002): Feeding
problems in infants with gastro-oesophageal reflux disease: a
controlled study. J Paediatr Child Health 35(2)163–169.
McGrath Davis A, Schule Bruce A, Mangiaracina C, Schultz T, Hyman P.
(2009): Moving from tube to oral feeding in medically fragile nonverbal
toddlers. Journal of Pediatric Gastroenterology and Nutrition 49: 233-
236.
An evaluation of an intensive desensitisation, oral tolerance therapy and hunger
provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
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53
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Northstone K,Emmett P, Nethersole F and the ALSPAC study team.
(2001): The effect of age of introduction to lumpy solids on foods eaten
and reported feeding difficulties at 6 and 15 months. Journal of Human
Nutrition and Dietetics 14: pp 43-54.
Patel MR, Piazza CC, Kelley ML, Ochsner CA, Santana CM. (2001): Using
a fading procedure to increase fluid consumption in a child with
feeding problems. Journal of Applied Behaviour Analysis No 3, (34) , 357
– 360.
Pelchat ML, Rozin P (1982): The special role of nausea in the acquisition
of food dislikes by humans. Appetite 3:341–351.
Puntis JWL (2008): Specialist Feeding Clinics. Archives of Disease in
Childhood 93: 164 – 167.
Reilly S., Skuse D H, and Poblete X (1996). The prevalence of feeding
problems and oral motor dysfunction in children with cerebral palsy: a
community survey. Journal of Paediatrics. 1996 129: 877-82.
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Senez C, Guys JM, Mancini J, Paz Paredes A, Lena G, Choux M (1996):
Weaning children from tube to oral feeding. Childs Nerv Syst 12:590–
594.
Trabi T ;DunitzT; Dunitz-Scheer M; Scheer P. (2006) Tube weaning
according to the Graz model: A retrospective analysis of 124 patients
from 1999 to 2005. European Journal of Pediatrics 165 - 220
Vakil N, van Zanten SV,Kahrilas P, Dent J, Lones R. (2006): The Montreal
definition and classification of gastroesophageal reflux disease: a
global evidence-based consensus. American Journal of
Gastroenterology. 101: 1900 -1920.
Wilensky D S, Ginsberg G, Altman M , Tulchinsky T H, Ben Yishay F
Auerbach J(1996): A community based study of failure to thrive in
Israel.
Arch. Dis. Child. 75; 145-148.
Winstein CJ. (1983): Neurogenic dysphagia. Frequency, progression,
and outcome in adults following head injury. Physical therapy. 63:1992-
1997.
Wolke D, Skuse D. (1992): The management of infant feeding problems.
In : Cooper PJ, Stein A. Eds., Feeding problems and eating disorders in
children and adolescents. Chur: Harwood Academic Publishers, 27-59.
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Figure 1 : Session Plan.
Pre-Intervention Assessment
Inclusion in 5 day intensive
Mat time – Greeting/Vegetable of the Day/ Drink time
Children
Cooking/ Messy Play/
Parents
Feedback/education session/
goal setting
Children
Washing Hands
Parents
Preparing and plating food
Meal time – maximum 30 minutes
Children
Play time
Parents
Review of goals
Home time
3 day PEG feed reduction
Review Assessment – 6 weeks
Review Assessment – 3 months
Repeat on 5
consecutive days
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Table 1: Child characteristics and medical history.
Greeting time
Mat time: Vegetable of the day
Cooking/ messy play
Children
Washing hands
Plating up , i.e. getting the meals ready.
Meal time, (for 30 minutes only).
Play time Goal setting
Parent feedback Parents education session Goal Setting/ objectives
Parents
Goodbye Goodbyes
Children
Children
Children
Children
Parents
Parents
Parents
Parents
Planning
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Child:
Age at
onset of
study:
Age of
gastrostomyPEG
tube insertion:
Gender: Medical
history:
Child A:
4 years, 4
months.
8 months.
Female.
IUGR; GORD;
premature,
born at 34
weeks. Displays
some mild
texture
aversions.
Child B:
3 years, 9
months.
9 months.
Male.
GORD; born at
41 weeks;
uncoordinated
sucking and
swallowing
pattern in
infancy;
“floppy larynx”. Displays some
severe food
texture
aversions.
Child C:
4 years, 8
months.
8 months.
Female.
GORD; motor
delay – floppy
baby; liver
disorder;
premature,
born at 36
weeks. Displays
some
moderate
texture
aversions.
Key:
IUGR = Intrauterine growth retardation.
GORD = Gastroesophageal reflux disease.
Table 2: Summary of oral motor function before the intervention.
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Child:
01 -
02
03 -05
06 – 08
09 -
011
012 -
014
Child
A:
0
0
0
0
0
Child
B:
0
1
1
0
0
Child
C:
0
1
1
0
0
POSP Categories
01 Facial features / symmetry.
02 Symmetry of the smile.
03 Jaw: habitual posture.
04 Jaw: ability to open mouth.
05 Ability to close mouth.
06 Lips: habitual posture.
07 Lips: tone of upper lip.
08 Lips: tone of lower lip.
09 Tongue: habitual position.
010 Tongue: status at rest.
011 Tongue: habitual posture.
012 Palate: structure of the hard palate.
013 Palate: structure of the soft palate.
014 Palate: movement of the soft palate.
Key:
0 = no oral motor difficulties.
1 = mild oral motor difficulties.
2 = moderate oral motor difficulties.
3 = severe oral motor difficulties.
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Table 23: Estimated Average Requirement / intake before and after the
intervention.
Time
Total oral
nutrition
intake
(kcal)
Nutrition
from PEG
(kcal)
Total
(kcal)
EAR
(estimat
ed
average
require
ment)*
% of EAR
from
oral
intake
Pre-
intensive
intervention
week
A 750 A 500 A 1250 1140 66
B 0 B 1200 B 1200 1050 0
C 600 C 800 C 1400 1140 53
Final day of
intensive
intervention
week
A 900 A 0 A 900 1140 91
B 600 B 600 B 1200 1050 57
C 600 C 800 C 1400 1140 53
6 weeks
post
intervention
A 1100 A 0 A 1100 1140 96
B 750 A 540 A 1290 1050 71
C 650 C 600 C 1450 1140 57
3 months
post
intervention
A 1300 A 0 A 1300 1140 114
B 800 B 500 B 1300 1050 76
C 600 C 600 C 1300 1140 53
*EAR (estimated average requirement)
Girls 4-6 years of age 95kcal/kg
Boys 4-6 years of age 90kcal/kg
Intensive Approach:
Child A
Child B
Traditional Approach:
Child C
An evaluation of an intensive desensitisation, oral tolerance therapy and hunger
provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
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61
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Formatted: Font: 10 pt
Table 4: Weight before and after the intervention.
Time 1 = Pre-intervention, (one week).
Time 2 = Post-intervention , (final day).
Time 3 = 6 weeks post-intervention.
Time 4 = 3 months post-intervention.
Table 5: Height before and after the intervention.
12.5 12.75 12.6 13.5
12 12 11.75 12.25
12.5 12.5 13.5 13.5
Weight in kg of t
13
13.5
14
kg
.
Height in cm of the participants.
80
85
90
95
100
105
110
1 2 3 4
Time measurement taken.
Heig
ht
in c
m.
Child A
Child B
Child C
An evaluation of an intensive desensitisation, oral tolerance therapy and hunger
provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
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Time 1 = Pre-intervention, (one week).
Time 2 = Post-intervention, (final day).
Time 3 = 6 weeks post-intervention.
Time 4 = 3 months post-intervention.
Table 36 a/b/c: Language strategies used by parents before and after
the intervention.
Child A parent behaviours
0
5
10
15
20
25
30
35
40
pre 6 wks 3 mths
reprimands
coaxing
commenting
Formatted: Tab stops: Not at 10.32cm
An evaluation of an intensive desensitisation, oral tolerance therapy and hunger
provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
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63
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Formatted: Font: 10 pt
Child B parent behaviours
0
20
40
60
80
100
120
pre 6 wks 3 mths
reprimands
coaxing
commenting
Child C parent behaviours
0
10
20
30
40
50
60
70
pre 6 wks 3 mths
reprimands
coaxing
commenting
Language strategies used by parents
to support mealtimes
0
20
40
60
80
100
120
1 2 3 4 5 6 7 8 9
Type of language strategy
Nu
mb
er
of
str
ate
gie
s u
sed
Child A Child B Child C
An evaluation of an intensive desensitisation, oral tolerance therapy and hunger
provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
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Formatted: Font: 10 pt
1 = Reprimands used during time of Time 1, (assessment pre- Intensive or Traditional
Approach).
2 = Reprimands used during mealtimes at 6 weeks post Time 1.
3 = Reprimands used during mealtimes at 3 months post Time 1.
4 = Use of coaxing during time of Time 1, (assessment pre- Intensive or Traditional
Approach).
5 = Use of coaxing during mealtimes at 6 weeks post Time 1.
6 = Use of coaxing during mealtimes at 3 months post Time 1.
7 = Use of commenting during time of Time 1, (assessment pre- Intensive or
Traditional Approach).
8 = Use of commenting during mealtimes at 6 weeks post Time 1.
9 = Use of commenting during mealtimes at 3 months post Time 1.
Table 47a/b/c: Mealtime strategies used by participant children before
and after the intervention.
Formatted: Indent: Left: 0 cm, Firstline: 0 cm
Formatted: Indent: Left: 0 cm, Firstline: 0 cm
Formatted: Indent: Left: 0 cm, Firstline: 0 cm
Formatted: Indent: Left: 0 cm, Firstline: 0 cm
An evaluation of an intensive desensitisation, oral tolerance therapy and hunger
provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
65
65
Formatted: Font: 10 pt
Formatted: Font: 10 pt
Child A behaviours
0
5
10
15
20
25
30
pre 6 wks 3 mths
initiation
ignoring
leaving the table
Child B behaviours
0
5
10
15
20
25
30
35
40
pre 6 wks 3 mths
initiation
ignoring
leaving the table
An evaluation of an intensive desensitisation, oral tolerance therapy and hunger
provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
66
66
Formatted: Font: 10 pt
Formatted: Font: 10 pt
Child C behaviours
0
2
4
6
8
10
12
14
16
18
20
pre 6 wks 3 mths
initiation
ignoring
leaving the table
1 = Language initiated with parent during time of Time 1, (assessment pre- Intensive
or Traditional Approach).
2 = Language initiated with parent during mealtimes at 6 weeks post Time 1.
3 = Language initiated with parent during mealtimes at 3 months post Time 1.
4 = Ignoring of parent’s communication about the meal during time of Time 1,
(assessment pre - Intensive or Traditional Approach).
5 = Ignoring of parent’s communication about the meal during mealtimes at 6 weeks
post Time 1.
6 = Ignoring of parent’s communication about the meal during mealtimes at 3
months post Time 1.
7 = Leaving the table during mealtime at Time 1, (assessment pre- Intensive or
Traditional Approach).
8 = Leaving the table during mealtimes at 6 weeks post Time 1.
9 = Leaving the table during mealtimes at 3 months post Time 1.
Mealtime strategies used by the children.
0
5
10
15
20
25
30
35
40
1 2 3 4 5 6 7 8 9
Time measurement taken.
Nu
mb
er
of
tim
es
ch
ild
ren
use s
trate
gie
s.
Child A
Child B
Child C
An evaluation of an intensive desensitisation, oral tolerance therapy and hunger
provocation programme for children who have had prolonged periods of tube feeds. ID JBR-10-0168 .R1
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67
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Formatted: Font: 10 pt
Formatted: Indent: Left: 0 cm,Hanging: 1.27 cm