Child:

Original Article
care, health and development
doi:10.1111/j.1365-2214.2011.01327.x

Feeding difficulties in children with cerebral palsy:

low-cost caregiver training in Dhaka, Bangladesh cch_1327 1..11

M. S. Adams,* N. Z. Khan,‡ S. A. Begum,‡ S. L. Wirz,* T. Hesketh* and T. R. Pring†

*Centre for International Health and Development, UCL Institute of Child Health
†City University London, London, UK, and
‡Child Development and Neurology Unit, Dhaka Shishu (Children’s) Hospital, Dhaka, Bangladesh

Accepted for publication 9 July 2011

Keywords
caregiver education,
cerebral palsy, feeding
disorders, interventions,
low-income setting,
maternal stress
Correspondence:
Melanie S. Adams, City
University London,
Northampton Square,
London EC1V 0HB, UK
E-mail:
mel.adams@uclmail.net
Abstract
Background The majority of children with cerebral palsy have feeding difficulties, which, if not
managed, result in stressful mealtimes, chronic malnutrition, respiratory disease, reduced quality of
life for caregiver and child, and early death. In well-resourced countries, high- and low-cost medical
interventions, ranging from gastrostomy tube feeding to caregiver training, are available. In
resource-poor countries such as Bangladesh, the former is not viable and the latter is both scarce
and its effectiveness not properly evaluated. The aim of this study was to evaluate the effectiveness
of a low-cost, low-technology intervention to improve the feeding practices of carers of children
with moderate–severe cerebral palsy and feeding difficulties in Bangladesh.
Methods An opportunistic sample of 37 caregivers and their children aged 1–11 years were invited
to a six-session training programme following an initial feeding assessment with brief advice. During
home visits, pre- and post-measures of nutritional status, chest health and feeding-related stress
were taken and feeding practices were observed. A control phase was evaluated for 20 of the
participant pairs following initial assessment with advice, while awaiting full training.
Results A minimum of four training sessions showed significant improvements in the children’s
respiratory health (P = 0.005), cooperation during mealtimes (P = 0.003) and overall mood
(P < 0.001). Improvements in growth were inconsistent. Dramatic reductions were observed in
caregiver stress (P < 0.001). A significant difference in the outcomes following advice only compared
with advice plus training was also observed.
Conclusions In situations of poverty, compliance is restricted by lack of education, finances and
time. Nonetheless, carers with minimal formal education, living in conditions of extreme poverty
were able to change feeding practices after a short, low-cost training intervention, with highly
positive consequences. The availability of affordable food supplementation for this population,
however, requires urgent attention.

most common cause of disability in children. Globally, 2.5 in

Introduction
Improvements in perinatal care over the past three decades have
led to increased survival rates. This has meant, however, that
many children who would not previously have survived infancy
are now living with conditions such as cerebral palsy (CP), the
every 1000 children are born with CP (Stanley et al. 2000) with
more developing it post-neonatally. In situations of poverty,
inadequate obstetric care and risk factors such as low birth-
weight can increase this figure to 40–50 per 1000 live births
(Sullivan et al. 2000). In 2000, a population-based study of

© 2011 Blackwell Publishing Ltd 1

2 M.S. Adams et al.
children aged 2–9 years in Bangladesh (Mobarak et al. 2000)
estimated the prevalence of severe disability to be 22/1000.
In the developing world the burden of care for the child with
CP falls almost entirely on the family. Up to 90% of these
children are reported to have feeding difficulties (Reilly et al.
1996), leading to moderate–severe secondary malnutrition and
limited fluid intake, which in turn leads to a further decrease in
level of functioning, health and well-being (Sullivan & Rosen-
bloom 1996). The impact is further exacerbated in the context
of widespread malnutrition and in a study conducted in Bang-
ladesh, malnutrition was found to be the leading cause of death
for children with CP in urban and rural populations (Khan
et al. 1998).
Difficulties with feeding also create a risk of aspiration, which
predisposes children with CP to recurrent respiratory disease. In
a study by Reddihough and colleagues (2001), the primary
cause of death in 155 children with severe CP in Australia was
pneumonia. Feeding children with CP can be extremely chal-
lenging and can take caregivers up to 7 h a day (Johnson & Deitz
1985). Caregiver stress is consequently high (Reilly & Skuse
1992; Sullivan et al. 2002), which in turn promotes unrespon-
sive feeding practices, feeding in a controlling and often abusive
manner, which leads to further difficulties (Black 1999; Hurley
et al. 2008). Mealtimes are frequently distressing for the child
and caregiver alike (Sullivan et al. 2000).
Despite years of investigation into the problems of feeding in
CP children, limited attention has been paid to this population
by health services, even in high-income countries (Sullivan et al.
2000). Nonetheless, in such countries, a range of services and
expertise exists to support these children, with an emphasis on
high-technology medical procedures, such as the introduction
of alternative feeding methods where required. This can result
in significant improvements with regard to child weight, health
and well-being, and reductions in time spent feeding, thus also
improving the quality of life of the caregivers (Sullivan et al.
2004, 2005). However, such services in resource-poor countries
are very scarce (Mobarak et al. 2000) and little research has been
conducted on the benefits of low-cost, low-technology solu-
tions, essential for addressing these issues in the developing
world.
This study was therefore set up to design, implement and
evaluate a low-cost intervention, to address the feeding difficul-
ties of children with moderate–severe CP in Dhaka, Bangladesh,
with a view to informing appropriate service development for
this population and their caregivers. The intervention was based
on the most widely respected practices developed by healthcare
professionals in the West and supported by the literature (see
Table 1).
© 2011 Blackwell Publishing Ltd, Child: care, health and development
The aim of the intervention itself was to promote child health
and well-being through maximizing children’s nutritional
intake, minimizing the risks of chest infection associated with
feeding, and reducing the stress experienced by the children and
their caregivers during mealtimes.
Methods
Ethical approval was obtained from the ethical review commit-
tees of The UCL Institute of Child, and The Bangladesh Insti-
tute of Child Health, Dhaka. Consent was obtained from
participants regarding involvement in the study, publication of
the results, and for all photographs and video footage.
The study was conducted in three slums of Dhaka and at the
Child Development and Neurology Unit of the Dhaka Shishu
(Children’s) Hospital (a national centre of excellence). Three
slums were targeted for their proximity to the hospital, in order
to facilitate home visiting and attendance at the training ses-
sions held in the hospital.
Participants
The participants were recruited by opportunistic sampling and
identified mainly through a non-governmental organization
(NGO) network of urban primary healthcare programmes.
Workshops were run for the NGO fieldworkers to inform them
about the study, followed by four screening days arranged in
different sub-centres, to make a preliminary selection of partici-
pants. Sixty children were screened, of which a total of 40 child–
caregiver pairs were identified. Of these, three subsequently
declined participation.
Inclusion criteria were: moderate–severe CP (levels III–V on
the Gross Motor Function Classification Scale; Palisano et al.
1997), reported or observed feeding difficulties, fully or semi-
weaned (i.e. not exclusively breastfeeding) and aged 1–11 years.
Children were excluded if they had a progressive or metabolic
condition, were chronically sick (cardiac, renal, gastrointesti-
nal), had a congenital syndrome, were taking steroids or thy-
roxin or receiving feeding services elsewhere. Participants were
assessed prior to entering groups at which time basic advice was
given. As some degree of dropout was expected, it was decided
on ethical grounds that basic advice at initial assessment, to
reduce the risks of aspiration and to promote nutritional intake,
was essential.
Conduct of the study
Following recruitment, 37 child–caregiver pairs were visited
at home to take baseline assessment data and subsequently
 Management of feeding difficulties in Bangladesh 3

Table 1. Summary of training objectives and rationales

Training objective
1. Introduce high-calorie, balanced
diet, given in small amounts
frequently.
2. Adapt food consistency as
appropriate.
3. Use appropriate utensils.
4.1 Adapt feeding method: Facilitate
appropriate trunk and head
position during feeding.
4.2 Adapt feeding method: Provide
support for jaw stability where
necessary.
4.3 Adapt feeding method: Foster
self-feeding skills.
4.4 Adapt feeding method: Use
sensitive, proactive and
responsive feeding methods
(including hygienic cooking and
feeding practices).
Rationale
Increase nutritional intake through
improved diet and increased
quantity of food consumed.
Reduce risks of aspiration by enabling
more effective oral and pharyngeal
management of food. Increase
nutritional intake through reduced
effort, increased calorie density of
food and encouragement of more
mature oral feeding patterns.
Reduce risks of aspiration by enabling
more effective oral and pharyngeal
management of food. Encourage
more mature feeding patterns and
increase nutritional intake.
Decrease risks of aspiration.
Facilitate maximization of physical
abilities.
Reduce spillage and assist chewing/
overall oral management of the
food.
Increase nutritional intake through
increasing desire to eat and ability
to eat independently.
Decrease risks of aspiration, increase
nutritional intake and decrease
distress to child through enabling
the more effective management of
food.
Increase nutritional intake through
physically facilitating feeding, and
by increasing child’s desire to eat
and their enjoyment of mealtimes.
Reduce risk of food contamination
through increased hygiene.
Related child outcomes Reference
Weight gain. Gisel & Patrick (1988)
Reilly et al. (1996)
Trier & Thomas (1998)
Socrates et al. (2000)
Reduction in chest-related illness. Gisel & Patrick (1988)
Improved oral feeding skills. Rogers et al. (1994)
Increased child cooperation. Trier & Thomas (1998)
Weight gain.
Reduction in chest-related illness. Trier & Thomas (1998)
Reduced child distress.
Increased child cooperation.
Weight gain.
Reduction in chest-related illness. Trier & Thomas (1998)
Maximization of self-feeding skills. Waterman et al. (1992)
Increased child cooperation. Larnert & Ekberg (1995)
Weight gain. Selley et al. (2001)
Gisel et al. (2003)
West & Redstone (2004)
Improved oral feeding skills. Haberfellner et al. (2001)
Weight gain. Selley et al. (2001)
Weight gain. Waterman et al. (1992)
Reduction in chest-related illness. Engle (2000)
Weight gain. Selley et al. (2001)
Reduced risk of diarrhoeal disease. Moore et al. (2006)
Decreased child distress. Hurley et al. (2008)
Increased child cooperation.

enrolled into training groups of four to five pairs (a total of
eight groups) consisting of six fortnightly sessions. The number
of participants was limited by the researchers’ capacity for con-
ducting home visits and the hospital unit’s capacity for running
groups. These were led by generic therapists already working in
the unit who had received specific training in delivering the
programme and were supervised by the primary author
throughout. Follow-up home visits to review outcomes took
place immediately after training (first review) and again after
4–6 months (second review). Some degree of control was
achieved by reviewing 20 pairs following initial advice (3–4
months after their initial assessment and advice session), while
awaiting intervention.
The intervention programme, comprising training and
support, was informed by the literature (see Table 1), by reports
on previous training programmes conducted in similar settings,
including nutrition programmes in Bangladesh, and through
consultation with other carers of children with CP.
The programme focused on improving dietary intake and
ease and efficiency of feeding through the following key com-
ponents: (1) introduce a calorie-dense, balanced diet, given in
small amounts frequently; (2) adapt food consistency to be
orally manageable; (3) use appropriate utensils; and (4) feed
the child in a sensitive and responsive manner, providing
appropriate postural and physical support for positioning and
self-feeding (see Table 1).

© 2011 Blackwell Publishing Ltd, Child: care, health and development

4 M.S. Adams et al.
The recommended diet was based on two local recipes (one
rice-based and one milk-based) which had been modified for
children with moderate–severe malnutrition by ICDDR,B (The
International Centre for Diarrhoeal Disease Research, Bang-
ladesh) and were thus high in nutritional value, especially in
calories. The consistencies of these two recipes were also easy to
manage orally, as they were smooth, soft and moist when cooked.
Each training session included educational content as well as
supervised feeding. Teaching methods included traditional
pedagogy, discussion, participatory and experiential activities
and the use of visual aids including a 20-min video drama
created especially for the programme. Each child was given a
low-cost seat ($5) made of reinforced cardboard using the tech-
niques of Appropriate Paper-based Technology (Packer 1995),
and a plastic teaspoon and cup bought in the local market1.
Outcome measures
Effectiveness of the intervention in relation to nutritional status
was assessed through anthropometric measurement using rec-
ommended measures of growth (Sullivan et al. 2002; Yousafzai
et al. 2003) including weight, mid-upper-arm circumference and
demi-arm span2 as well as 24-h and monthly food and fluid recall
charts completed verbally by carers. Chest health was monitored
through carer reports on the frequency of respiratory illness,
while child feeding skills and affect during feeding were rated
using video footage of observed mealtimes. Overall child mood
was assessed through carer reports. Caregiver outcomes were
evaluated through semi-structured interviews in which they
were asked to rate their feelings with regard to their child’s
feeding difficulties and recall the amount of time spent in
feeding. Carer compliance with the training recommendations
was also assessed through interview and observation. In order to
enable the systematic scoring of child and caregiver behaviours
during mealtimes, a checklist was developed. This was tested for
inter-rater reliability using Cohen’s Kappa (Cohen 1960), which
for the majority of variables was ‘good’ (60–75%) or ‘excellent’
(>75%) according to the categories of Fleiss (1981).
Analysis
Statistical analysis was conducted using spss (version 15.0).
Data were analysed using independent and paired samples
t-tests where appropriate. For non-parametric data, the Fried-
man test, the Wilcoxon signed ranks test and the McNemar test
were used.
1
For further details on the intervention, please contact the main author.
2
Used as a proxy for length, due to deformities of the spine and limbs.
© 2011 Blackwell Publishing Ltd, Child: care, health and development
Analysis of the qualitative data followed the constant com-
parative approach used in Grounded Theory (Glaser & Strauss
1967) in order to identify key themes in relation to caregivers’
perceptions of feeding and the outcomes of the training.
Results
Characteristics of the participants and the mealtime experi-
ence before intervention are summarized in Table 2. Using the
World Health Organization growth standards (2006) and
comparative values obtained from the Bangladesh Child and
Mother Nutrition Survey 2005 (BBS/UNICEF 2007), the study
children were 2.1 z-scores below their non-disabled peers with
regard to mean weight-for-age (WAZ), 0.97 z-scores below for
height-for-age (HAZ) and 2.27 z-scores below for weight-for-
height (WHZ). Seventy-four per cent of caregivers scored
above the threshold of 7 points for psychological disturbance
on The Self-Reporting Questionnaire 20 items (SRQ20)
anxiety scale (Harding et al. 1980). Mean fluid intake, through
drinks, was 201.8 mL (SD 178.9). Caregiver comments regard-
ing their experience of the feeding process were almost exclu-
sively negative and included admissions of abusive behaviour,
as follows.
I feel angry sometimes and hit him when I have to force
him hard to eat. At that time I have to hold all his limbs
down in lying position.
I beat her because it’s hard work for me and it takes a long
time.
I always feel impatient because he cries a lot, so I shout at
him and bite him.
Post-intervention outcomes
Of the 37 participant pairs recruited to the study, 13 dropped
out at various stages. The main reason was due to the family
moving away, usually back to the village because of financial
difficulties (n = 7). Other reasons included lack of caregiver
motivation or time (n = 3), caregiver sickness (n = 1) and child
sickness (n = 2). A further two participants only received one
follow-up review, again because of sickness (see Fig. 1).
Complete data were thus collected on 22 child–caregiver pairs,
17 of whom attended four to six training sessions. Significant or
highly significant improvements were observed at follow-up in
several areas. At the second review (see Table 3), these included
significant improvements in chest health (P = 0.005), nutritional
status (P = 0.02), child feeding skills (P < 0.001) and child mood
 Management of feeding difficulties in Bangladesh 5

Table 2. Participant data prior to intervention

Children
Age Mean Range SD
3 years, 11 months 19–129 months 2 years, 3 months
Gender n
Male 8
Female 14
CP type n
Spastic 17
Hypotonic 3
Athetoid 1
Mixed 1
Severity of CP n
Level III (moderate) 3
Level IV (severe) 3
Level V (severe) 16
Anthropometrics (Cole et al. 1998) Mean SD
WAZ -4.83 1.84
HAZ -2.70 1.98
BMIZ -4.08 2.86
Chest-related illnesses n
Weekly 2
Monthly 7
2–3 monthly 7
<3 monthly 6
Daily fluid intake (through drinks) Mean Range SD
168.1 mL 0–375 mL 108.2
Discomfort/distress during feeding n
Any observed discomfort/distress 14
Caregivers
Overall anxiety (SRQ20) Mean SD Score >7*
10.0 4.5 16 (72.7)
Caregiver stress re-feeding n
Very stressed 19
Somewhat stressed 3

*Score above threshold for psychological disturbance (Mari & Williams 1985).
CP, cerebral palsy; WAZ, weight-for-age; HAZ, height-for-age; BMIZ, body mass index z-score; SRQ20, The
Self-Reporting Questionnaire 20 items.

(P < 0.001). Improvements in child affect during feeding were
almost significant (P = 0.059). Benefits to caregivers included
decreased stress with regard to feeding (P < 0.001), and a per-
ceived reduction in mealtime length (P < 0.001). For the pur-
poses of comparing overall compliance between individuals, a
measure scoring carer behaviour change on a number of indices
was devised. Using this measure, carers who received advice plus
training achieved significantly higher scores than those who
received initial advice only [t(40) = 6.82, P < 0.001].
Qualitative statements from caregivers focused mainly on
changes in child affect (improved mood, cooperation and
decreased distress during feeding) and the ability to eat and
drink more easily with a greater range of textures, as illustrated
in the following comments:
He was screaming before with all food and I had to force
him, but now he eats without screaming and I don’t have
to force him.
My child laughs now. Before, she cried a lot. Now when I
feed my child she responds well. She finds eating is easier.
Before, she used to get annoyed.
Before, I couldn’t imagine my child would be able to eat
rice and now I’m so surprised that he can.
An illustration of the overall changes during mealtimes is
shown in Fig. 2. Other reported changes included improve-
ments in communication, interaction, participation and general
mobility.

© 2011 Blackwell Publishing Ltd, Child: care, health and development

6 M.S. Adams et al.

Cohort 1 Baseline 1st 2nd

(BSL) Review Review
Training No input
groups
10 months
Initial 2.5 4–5 months 2nd post-
assessment months 1st post- training
& advice training review
review

n =16 n =13 n =11 n =10

Cohort 2 Baseline Post- 1st 2nd

(BSL) advice Review Review
No input review Training No input
groups
14 months
3–4 months Post-advice 2.5 4–6 months 2nd post-
Initial review & months 1st post- training
assessment advice training review
& advice reiterated review

n =21 n =20 n =15 n =13 n =12

Figure 1. Study design.

In terms of benefits to the caregivers, all but two reported
feeling less worried and more optimistic about their child’s
problems. They were happy with their increased competence,
being able to feed their child in more normal and convenient
ways (e.g. sitting up) and in their child’s improved feeding
abilities. Comments illustrating this include the following:
Because I’ve been through the training I know how to
feed her and how much to feed her . . . and I’m happy and
she’s happy . . . we’re both happy.
I feel good because my child has stopped vomiting when
he eats because you advised me to sit my child up for feeding.
And now he has less fever as a result and I feel good.
I feel good because now when we’re having our food he
asks for food – and that makes me feel good.
There was also a reduction in the number of complaints
about feeding taking a long time and there was a marked
decrease in the number of negative feelings expressed towards
the children during feeding (from 50 to 28 in total), as reflected
in the following statements:
Before I felt annoyed and angry during mealtimes
but now I feel that if I feed my child in the new way,
slowly he will improve. I don’t feel annoyed or angry
anymore.
Before, I felt really annoyed and I used to slap him. Now
I feel good. I feel that if I continue in this way, he will be
able to eat like other children.
Twelve caregivers reported positive changes in the attitude
and behaviour of other family members towards the child or
caregiver. One mother commented:
They are more interested in her and take her on their lap
more because they see she is less sick now and more lively
because of the training.
Discussion
A comparison of the results with those from other studies
(Reilly & Skuse 1992; Reilly et al. 1996; Sullivan et al. 2000)
revealed that the issues for children with feeding difficulties and
their caregivers are universal. However, in situations of poverty,
problems are exacerbated by factors such as lack of resources to
buy nutritious food, limited time and facilities for cooking
special recipes and the lack of access to rehabilitation and health
services to deal with associated complications. Further prob-
lems arise for individuals living in a hot climate such as in
Bangladesh, where the risk of dehydration is high, and in slums,
where infection, especially gastrointestinal and respiratory, is
common.

© 2011 Blackwell Publishing Ltd, Child: care, health and development

 Management of feeding difficulties in Bangladesh 7

Table 3. Quantitative outcomes of the intervention

Baseline Follow-up (second review)
Children (n = 22)
Chest health n n P-value
Frequency of chest-related illness occurring at least once every 3 months 15 6 0.005
Nutritional status Mean Mean P-value
Mean WAZ (Cole et al. 1998) -4.83 (SD 1.84) -4.07 (SD 2.45) 0.02
MUAC raw scores (cm) 14.75 (SD 1.41) 15.46 (SD 1.57) 0.001
Fluid intake Mean Mean P-value
Mean intake through drinks (mL) 173.7 (SD 107.48) 300.2 (SD 218.33) <0.01
Child affect during feeding n n P-value
Discomfort/distress during feeding – observed
Distressed mostly 3 0 0.06
Sometimes/occasionally 2 0
Discomfort mostly 1 2
Sometimes/occasionally 8 6
Neither 8 13
Fussiness – reported yes/no 14 6 0.005
Food refusal – reported
Always 9 1 0.003
Sometimes 12 15
Never 1 6
Child feeding skills n n P-value
Maturity of oral feeding manner – observed number munching or chewing 6 18 <0.001
Involvement in self-feeding – observed yes/no 0 6 0.02
Additional benefits n n P-value
General mood – reported number with predominantly negative mood 15 2 <0.001
Caregivers
Stress n n P-value
Stress regarding feeding – reported
Very 18 2 <0.001
Somewhat 4 2
A little 0 5
Not at all 0 13
Time spent feeding (n = 16) n n P-value
Observed >30 min per meal 0 3 0.005
Reported >30 min per meal 14 6 0.005

WAZ, weight-for-age; MUAC, mid-upper-arm circumference.

Nonetheless, this study has shown positive outcomes in a
number of child and maternal variables, including (1) a
marked reduction in the risk of aspiration during feeding and
the number of chest-related illnesses; (2) improved or main-
tained nutritional status in 13 children; (3) a noticeable
increase in child cooperation during mealtimes and overall
mood; (4) a marked reduction in caregiver stress regarding
their child’s feeding difficulties; and (5) a clear reduction in
distress experienced by the child and caregiver during meal-
times. The outcomes of this low-cost, easily replicable inter-
vention therefore have important implications for countries
with limited resources.
While this study concentrated on the mother–child dyad, it is
anticipated that the improved health experienced by the child
with CP due to improved carer feeding practices would, in turn,
reduce the amount of time the mother spends caring for the
child, as well as reduce the resources needed for medical con-
sultations and medication. This low-cost intervention is there-
fore anticipated to have additional benefits in these very poor
households, both in terms of increased carer availability for
other members of the family as well as available financial
resources.
Despite improvements in dietary intake and successful
feeding, it should be noted that improvements in growth were
modest and inconsistent. The maintenance of growth trajecto-
ries alone is a huge challenge in this population (Gisel et al.
2003) and catch-up growth is hampered by the physical inability
to ingest sufficient calories (Gisel & Patrick 1988). According to
Gisel and Patrick (1988), in order to compensate for the poten-
tial detrimental effect of oromotor dysfunction on nutritional

© 2011 Blackwell Publishing Ltd, Child: care, health and development

8 M.S. Adams et al.

Pre-training Post-training

Figure 2. Child–caregiver pairs pre- and post-training. The photographs show children and their caregiver at their baseline assessment (column 1), and
at follow-up (column 2).

© 2011 Blackwell Publishing Ltd, Child: care, health and development


intake, daily feeding times would need to be longer than normal
waking hours. Fluid intake in the current study, which remained
severely inadequate, was likely to have been restricted by physi-
cal limitations, in the same way.
The calorific content of the food for this population there-
fore needs to be much higher in order to compensate.
However, special diets are difficult to provide as they are
expensive and require extra cooking time. This is a particular
problem for poor families who often share stoves with other
families and where caregivers are already short of time.
According to Brown and colleagues (1993), to close the energy
gap would cost 8% of the parents’ daily wage for a normally
developing Bangladeshi child. The cost is likely to be higher to
breech the gap for disabled children who are more severely
malnourished. Karim and colleagues (2005) showed that
powdered micronutrient mixes would amount to a fraction
of the cost of buying additional fresh foods required to
meet the micronutrient gap for malnourished children in
Bangladesh. They add that the bulk of fresh food necessary
would exceed the intake capacity of young children. This is,
of course, is greatly exacerbated in children with feeding
difficulties.
Ultimately, a combination of caregiver education and food
supplementation is likely to provide a better opportunity
for greater catch-up growth as, even in non-disabled Bang-
ladeshi children, a combination of dietary education and food
supplementation has been found to be more effective than
caregiver education alone (Roy et al. 2005). This needs to be
investigated along with the possibility of access to free supple-
mentation. Free supplements are often available to non-
disabled children through mainstream services in countries
such as Bangladesh. However, children with disabilities do not
access these services either because of lack of awareness of the
need for their inclusion or because of the fact that nutrition
units target those suffering from diarrhoeal disease only. This
is a shortfall which violates the rights of the disabled and
which should be addressed by policy makers as a matter of
urgency.
The study has a number of limitations, most importantly,
that of small sample size because of logistical constraints, with
additional losses at follow-up. Ethical considerations also meant
that a conventional non-treatment control could not be
employed. Nevertheless, the comparison of the trained group
and the advice only group was highly significant as were other
results in the study and detailed data collection on each child–
caregiver pair provided valuable information. The study does
demonstrate clearly that changes in feeding practices alone can
make a dramatic difference to child cooperation and feeding
Management of feeding difficulties in Bangladesh 9
ability and can impact significantly on child health as well as
child and caregiver well-being.
Key messages
• Children with moderate–severe cerebral palsy frequently
experience extreme difficulties with eating and drinking,
which if not managed, result in stressful mealtimes,
chronic malnutrition, respiratory disease, reduced quality
of life for caregiver and child, and early death.
• Significant improvements to child health and child–
caregiver well-being can be achieved after a minimum of
four low-cost training sessions.
• Advocacy is urgently required to increase awareness and
support among governments, health service commission-
ers and health providers at all levels, regarding the needs of
children with disabilities and feeding difficulties and their
caregivers, in order for services to be made available.
• The assessment of growth and growth monitoring should
always coexist alongside training on the management of
feeding difficulties.
• Research is urgently needed to investigate the appropriate-
ness, effectiveness and sustainability of providing locally
produced food supplements to this population, in addi-
tion to education on diet.
Conflict of interest statement
The authors declare that the submitted work and its essential
substance have not previously been published and are not being
considered for publication elsewhere. They also declare that the
work being submitted is their own and that copyright has not
been breached in seeking its publication. They confirm that the
funder had no involvement in the study design, data collection
and analysis, and manuscript preparation.
Acknowledgements
The authors gratefully acknowledge a grant from Citycell
mobile phone company, Dhaka, which funded the fieldwork
component of this study, support from the Centre for the Reha-
bilitation of the Paralysed, Savar, and contributions from staff at
the Child Neurology and Development Unit, Dhaka Shishu
Hospital, including Dr Das Kumar Uzzal, Dilara Begum, Shelina
Akhter, Yasmin Tanaka and Sheikh Zadi Rezina. The authors are
© 2011 Blackwell Publishing Ltd, Child: care, health and development
10 M.S. Adams et al.
also grateful to Dr Aisha Yousafzai, for her assistance in the
original design of the study and to Carlos Grijalva-Eternod, for
his assistance in the analysis of the anthropometric data.
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