city research online · 200715), and the graz model in austria, (scheertrabi et al, 200616)....

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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/ Copyright & reuse City University London has developed City Research Online so that its users may access the research outputs of City University London's staff. Copyright © and Moral Rights for this paper are retained by the individual author(s) and/ or other copyright holders. All material in City Research Online is checked for eligibility for copyright before being made available in the live archive. URLs from City Research Online may be freely distributed and linked to from other web pages. Versions of research The version in City Research Online may differ from the final published version. Users are advised to check the Permanent City Research Online URL above for the status of the paper. Enquiries If you have any enquiries about any aspect of City Research Online, or if you wish to make contact with the author(s) of this paper, please email the team at [email protected] .

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Page 1: City Research Online · 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

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/

Copyright & reuse

City University London has developed City Research Online so that its users may access the

research outputs of City University London's staff. Copyright © and Moral Rights for this paper are

retained by the individual author(s) and/ or other copyright holders. All material in City Research

Online is checked for eligibility for copyright before being made available in the live archive. URLs

from City Research Online may be freely distributed and linked to from other web pages.

Versions of research

The version in City Research Online may differ from the final published version. Users are advised

to check the Permanent City Research Online URL above for the status of the paper.

Enquiries

If you have any enquiries about any aspect of City Research Online, or if you wish to make contact

with the author(s) of this paper, please email the team at [email protected].

Page 2: City Research Online · 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

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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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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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Comment [c2]:

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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.

Put Figure 1 here.

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.

Put Table 3 2 about here.

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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..

Put Table 63 a/b/c about here.

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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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.

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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.

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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.

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facial hypersensitivity following brain injury. Brain Injury, 17; (4) 347 – 354.

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of children between six months and two years of age. Dev Med Child

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Illingworth RS ,Lister J(1964) : The critical or sensitive periods, with special

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drinking using previously refused foods as positive and negative

reinforcement. Journal of Applied Behaviour Analysis No 1, (36) 89 – 93.

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hunger provocation. Journal of Pediatric Gastroenterology and

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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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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

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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

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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

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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

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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.

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Formatted: Indent: Left: 0 cm, Firstline: 0 cm

Formatted: Indent: Left: 0 cm, Firstline: 0 cm

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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

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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

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