Personal Design Project Report

PERSONAL DESIGN PROJECT 2:
DYSHASIA AID
Design Studies
Tom Statters
N0564392
Word count: 3058

Tom Statters Dysphagia Aid Product Design BSc
Personal Design Project 2
Table of Contents
Abstract ......................................................................................................................................... 3
Introduction .................................................................................................................................. 4
Literature Review .......................................................................................................................... 5
Research Finding ........................................................................................................................... 9
Existing products Oakfield used: ................................................................................................ 12
Conclusion ................................................................................................................................... 15
References .................................................................................................................................. 16
Appendix ..................................................................................................................................... 17

Abstract
This report looks into the causes and effects of dysphagia, a condition that negatively
impacts a person’s ability to swallow food and drink. I have researched online sources and
medical reports from doctors and speech language therapists, as well as interviewing an
occupational therapist and members of staff at a school for severely disabled children. My
findings show that there is definitely an opportunity to design products that make living
with dysphagia easier and less stressful for both the sufferer and their parents or carer.

Introduction

Dysphagia is the medical term for difficulty swallowing. Some people with dysphagia have
problems swallowing certain foods or liquids, while others are unable to swallow at all.
Common signs for dysphagia include:

• Coughing or choking when eating or drinking
• Bringing food back up, sometimes through the nose
• A sensation that food is stuck in the back of your throat
• Persistent drooling of saliva

Dysphagia is a common condition associated with Cerebral Palsy and other neurological
disorders that affect movement and co-ordination. A child with cerebral palsy is likely to
encounter a number of health concerns during his or her lifetime – one of the most stressful
to manage – is dysphagia. Commonly known as oral-motor dysfunction. Typically, this
condition occurs because the muscles used to push food down the oesophagus have been
affected, making the movement of food and liquids from the back of a person’s mouth to
the stomach very difficult.
(Choices, 2015)

Literature Review
Difficulty swallowing usually results from a neurological or physical impairment of the oral,
pharyngeal or oesophageal mechanisms. The ‘normal’ swallow has 4 phases:

1. Oral preparatory
2. Oral
3. Oropharyngeal
4. Oesophageal

The first three of these are called the oropharyngeal phase. For a ‘normal’ swallow to take
place respiratory, oral, pharyngeal, laryngeal and oesophageal anatomical structures must
function in synchrony, this is dependent upon the motor and sensory nervous system being
intact (see appendix A). Disorders in swallowing are associated with increased likelihood of
aspiration, chest infections and pneumonia, these are due to food or drink going down the
airway to the lungs, rather than the oesophagus to the stomach. Dysphagia is also related to
increased morbidity, mortality and a reduced quality of life. Pneumonia and weight loss are
both common secondary conditions of dysphagia with the former being linked to
considerably higher costs of health care. (details of this are given in appendix B)

Below is a table showing the Incidence and prevalence of Dysphagia and the health
conditions associated with it:
Client group Incidence/Prevalence of
condition
Incidence/Prevalence of
dysphagia within condition
Stroke 200/100,000 per UK population
each year affected by stroke
(National Clinical Guidelines for
Stroke 2012).
Studies report an incidence of
dysphagia of between 40% and
78% (Martino 2005)
Of those with initial dysphagia
following stroke76% will remain
with a moderate to severe
dysphagia and 15% profound
(Mann et al 1999)
Progressive neurological disease

Dysphagia can be an initial
symptom in a small number of
people with progressive diseases
such as Parkinson's disease,
multiple sclerosis and motor
neurone disease, but the majority
will develop dysphagia with
progression of the disease
200/100,000 UK population have
dysphagia due to Parkinson’s
disease (Hartelius and Svensson
1994). More than 90% of those
with motor neurone disease will
develop dysphagia
Dementia 68% of those with dementia in
homes for the aged have
dysphagia (McGleenon, B, Steele)
Adult Learning Disability 5.27% of all adults with a learning
disability were referred for advice
regarding dysphagia (Chadwick et
al 2003)

Cerebral Palsy Sucking (57%) and swallowing
(38%) problems in the first 12
months of life were common, and
80% had been fed non-orally on
at least one occasion.
99% of children with severe
cerebral palsy have dysphagia
(Calis et al 2008)
(RCSLT, 2009)
As this table shows, this condition is not only prevalent in cases of cerebral palsy – but can
also be caused by other health conditions such as a stroke, dementia and learning
disabilities among adults. 57% of children with cerebral palsy have problems sucking and
38% have issues with swallowing in their first 12 months of life, whilst at the same age, up
to 80% had been fed non-orally at least once. (Non-oral explanation in appendix C)

Calis et al conducted a mealtime observation study of 166 children aged 2-19yrs in 2008, his
results indicated that a staggering 99% of children with severe cerebral palsy suffer from
dysphagia.
Cerebral Palsy
Cerebral palsy is the general term for multiple chronic, neurological conditions that affect
movement and co-ordination. Neurological conditions are caused by problems in the brain
and nervous system. Specifically, cerebral palsy is caused by a problem in the parts of the
brain responsible for controlling muscles. The condition can occur if the brain develops
abnormally or is damaged before, during or shortly after birth.
Weak tongue or cheek muscles make it hard to move food around in the mouth for
chewing. Food pieces that are too large for swallowing may enter the throat and block the
passage of air. Other problems include not being able to start the swallowing reflex, a
stimulus that allows food and liquids to move safely through the pharynx. People with
dysphagia are unable to begin the muscle movements that allow food to move from the
mouth to the stomach. Another difficulty can occur when weak throat muscles cannot move
all of the food toward the stomach. Pieces of food can fall or be pulled into the trachea,
which may result in aspiration pneumonia (Description of Aspiration pneumonia is in
appendix D).
(Anon 2003)

There are three main treatments for dysphagia:

1) Dietary Changes:
It is encouraged by health professionals such as doctors, occupational therapists and
speech and language therapists that dietary changes may be necessary in order to
effectively manage dysphagia. Changes in the texture or thickness of food and drink
are also advised. You might be able to chew and swallow smaller pieces so by
chopping, mincing or puréeing food it can make it easier to swallow. Food should be
prepared and consumed this way to avoid inhaling into the lungs.

2) Therapy & Exercise:
The most common treatment for dysphagia is swallow therapy, conducted with a
speech language, occupational, or physical therapist (Speech and language
therapists description appendix E). Speech and language therapists use a range of
techniques that can be tailored for a specific problem or issue when eating, such
as teaching swallowing exercises that strengthen the muscles in the throat, to enable
the progression of learning to swallow unassisted.

3) Feeding Tubes:
Feeding tubes can be used to provide the user with the correct nutritional needs if
and when the ability to swallow is either damaged or recovering. They may also be
required in severe cases of dysphagia where the patient is at risk of dehydration and
malnutrition.

A feeding tube can also make it easier to consume any other medication a person
may need for another condition, which typically could be for cerebral palsy.

There are two types of feeding tubes:
1. Nasogastric Tube – a tube that is passed down your nose and into your stomach.

(RCHM, unknown date)


2. Percutaneous Endoscopic Gastrostomy (PEG) tube – a surgical procedure in
which a flexible tube that is implanted through the abdomen wall and into your
stomach. PEG allows fluid, nutrition and medication to be inserted directly into
the stomach, bypassing the the mouth and oesophagus.

(Choices, 2015)

(Cleveland Clinic, 1995)

Research Finding
Justification of Selected Methods

From my secondary research I have decided that the most effective way to learn more
about the issues faced by people suffering from dysphagia, would be to partake in some
user shadowing. This would involve me observing an occupational therapist, full time carer
or parent feeding a child with cerebral palsy who suffers from dysphagia. This method
would allow me to gain rich, first hand information from someone who experiences the
difficulties of feeding severely disabled children on a daily basis. In order to get the most
rounded and detailed research I will look into the varying severity of each child’s condition,
this will allow me to discover the particular issues faced by those with the most critical
conditions and how those will differ from those who are in the middle and also those who
have the least severe disabilities.

It has become clear that a project like this may not be solely for the person with the
disability, it could also be for the parent or the carer. Raising a child with Cerebral Palsy is a
full time job in itself, one which eats into all other aspect of a parent’s life. Simple tasks that
would usually be easy now become extremely difficult chores that would rather be avoided.
For instance, leaving the house to go into town or to the beach would involve packing
multiple food bags, feeding tubes and equipment, and as of when the child needs feeding
where are they going to be able to do this? And will they feel comfortable feeding their child
through a gastric tube in public with various onlookers? Will the time consuming process of
packing all this equipment make them avoid going out in the first place? These are the sorts
of questions that I will need to be asking parents and carers in order to establish detailed
knowledge on how people do or do not deal with these issues.

Summary of primary research finding

I began my primary research by emailing occupational therapist who specialises in
paediatrics, Gillian Ritchie. I enquired about the issues she encounters when dealing with
children with severe physical and learning disabilities in her job role. Gillian brought up the
issue of feeding children with cerebral palsy and said that dysphagia creates many problems
that affected feeding a child. I decided that it would be best to visit Gillian whilst she was
feeding a child with cerebral palsy.

From this visit I identified several issues that are faced by the child and carer during meal
times. These are some of the issues I found:

• The positioning of the child during eating is a critical factor, the majority of sufferers
need to be in an upright position during feeding to ensure their feeding passages are
clear and unobstructed. This means that some must have supports keeping their
body or head in a fixed position, these supports are usually adjustable attachments
to the wheelchairs.

• A large proportion of cerebral palsy sufferers also have limited motor skills in their
hands and arms, making feeding themselves close to impossible, they require a carer
or parent to feed them at each mealtime.

• Vomiting and choking is a dangerous hazard for these children with limited motor
skills as they cannot use the muscles in their mouth appropriately, this means that a
normal diet is not suitable. At a young age formula is used to ensure the child gets
enough nutritional value in their diet. This diet may continue throughout childhood
in the most severe cases of disability. For the less severe, food is blended or mashed
to a pulp and watery liquids are thickened to prevent the likelihood of choking and
vomiting on the substances.

• Another issue Gillian mentioned was the lack of suction some children have which
prevents them from using particular suction cups, and everyday drinking cups.

From what I learnt, my research would have to come from speaking to the teachers and
carers that work at a special school. Having emailed several schools, I got a reply from the
Head Teacher of Oakfield School. David Stewart invited me to a User Group Meeting.

(Stewart, 2016)

Here I presented the information I had gathered about dysphagia to the group, David and
the other researchers agreed that dysphagia was a big issue that could improved on. David
invited me to observe a typical lunch time at the school the next day, to get a better
understanding of what happens during an average school meal time.

What I learnt from the visit:

My visit to Oakfield School proved to be invaluable to my analysis of dysphagia sufferers. I
was taken around the site where students were organised in classrooms of a similar
disability level. The children with the most severe cases of dysphagia from cerebral palsy
were fed using motorised pumps and bolus gravity feeds, whilst the children with less
severe cases were fed liquefied food.

From speaking to the teachers and careers of the pupils I discovered insights into the lives of
the pupils. I spoke with Lorraine, a senior member of staff, about one particular boy called
James who had been a pupil at the school since he was 8 years old. One of the main
difficulties James endured during time at school was his inability to drink from a standard
cup or glass. He had always used a suction cup, designed for babies and toddlers. As he was
getting older this was one thing Lorraine and the others members of staff believed needed
to be worked on and altered by the time he left school, they thought that the simple act of
being able to drink from a glass is something that can help disabled people feel more like
‘everybody else’ and less like an ‘outsider in society’.
(Lorraine 2016)

This idea of not wanting to look ‘disabled’ was a crucial factor, as my research found that
some of the older students going into their teens are unlikely to want to be using a product
that makes them look different to everyone else, even if it is useful to them. Therefore, my
design must not look like it is designed for a disabled person or an infant. An example of this
was explained to me by a member of staff, who spoke about rather than using a standard
bib to prevent drool from getting on the child’s clothes, they used a cravat tied around their
neck as it did not make them look as childish.

(Statters, 2016)

Existing products Oakfield used:

1. Feeding Tubes:

Fig. 1 is an example of a Gravity Feeding Tube, here food formula, water or medication can
pass down through a PEG tube directly into the child’s stomach.
Advantages:
• Faster method of feeding than pump, rather than being hooked up for +5 hours a
day, the child can eat at regular meal times and the process only takes a few
minutes.
• Less equipment to carry for the parents or carer.
Disadvantages:
• The process is more prone to induce vomiting over pump feeds.
• It can become tiring for the person doing the feeding.

Fig.2 is an example of an Electronic Gastro Pump; this has the same function as a gravity
tube but instead of using gravity to insert the nutrients a motorised pump pushes them
through the tube into the child’s stomach.
Advantages:
• Continuous feeds spread out over a longer space of time, therefore much easier to
tolerate and less likely to vomit.
• Good for children who don’t have the capacity to sit or stay still as nothing can be
spilled.
Disadvantages:
• The child is connected to tubes for a long portion of the day.
• There is more equipment to carry for the carer.

(Tube feeding Blog, 2009)

Fig.1 (Statters,2016) Fig.2 (Bella, 2009)

2. Wheelchairs:

Fig.3 and Fig.4 below are examples of the types of wheelchairs that are used at Oakfield
School, they are elaborate designs with many adjustable parts. There are several side
supports on each side of the wheelchair used to hold the child’s body and head in an upright
state and in the correct position to be fed, as most children with cerebral palsy have
reduced strength in their muscles on either side of their spine and will slump in their chairs,
which reiterates the information I gathered from Gillian Ritchie.

The optimum angle of the wheelchair during feeding depends entirely on the severity of the
child, the most severe tend to be laying flat, whereas the most common position tends to be
at a 45° angle. This is to prevent the likelihood of choking that comes when sat up straight
or lying down flat.

Some of these wheelchairs often cost over £2000, due to the consumer’s necessity of the
product, and the various modifications that each child needs for their individual wheelchair.

Fig.3 Fig.4


3. Suction Cups/Cups:

Below are some examples of the sipping cups used by the pupils at Oakfield, the cups in
Fig.5 and blue cup in Fig.6 have a soft suction teat which will not hurt the child’s mouth,
however these teats can make it hard for the child to suck up the drink. The green cup has a
hard teat this is easier to suck from, but can irritate or hurt the child’s gums.

The pink cup in Fig.7 has been designed at an angle which means the user does not have to
tilt their head back as far to drink from it, as it could put strain on their neck. Most of these
cups have two handles to make holding them whilst drinking easier.

Fig.8 below is a malleable cup, primarily intended for the carers to use when helping the
child drink a thickened glass of water. The mouth of the cup can be altered to ensure less
drink is spilt.

One of the main problems that children with dysphagia endure, is their inability to generate
enough suction to drink from these cups.
Fig.5 Fig.6 Fig.7
Fig.8

Conclusion

From the time I spent at Oakfield School I have found there are three main theories that I
will use in the design of my product.

The first being that each pupil varies so vastly that it may be more appropriate to design a
product for one child in particular; either the same age-group, or the same severity of
disability. I would choose a design that allows the child to progress and develop their motor
and coordination skills as they age. Potentially a cup which helps the child transition from a
suction cup for infants, to a regular cup for adults. I will also look at designing a cup that
increases the ease of suction for the child, thinking carefully the shape, size and desirability
of the product.

My second theory would be to improve the life of the family and carers of the child
attempting to make daily tasks less stressful and time consuming, as it seems a lot of
parents simply choose to not go out, as they know it would require too much time and
hassle for them. This is almost as important as the sufferers need themselves, especially
those who are severely disabled and rely on their carers at all times.

Finally, ensuring that the children are motivated to use the product is essential, I may create
a helpful and successful product, but if they do not feel comfortable using it or if they do not
like the way it looks, then they will simply not want to use it, and will become redundant.

My design must be simple, functional, fun and not a symbol of disability!

References
Choices, N. (2015) Dysphagia (swallowing problems) - causes - NHS choices. Available at:
http://www.nhs.uk/Conditions/Dysphagia/Pages/Causes.aspx (Accessed: 16 April 2016).

RCSLT (2009) RCSLT RESOURCE MANUAL FOR COMMISSIONING AND PLANNING SERVICES FOR SLCN
Dysphagia. Available at:
http://www.rcslt.org/speech_and_language_therapy/commissioning/dysphagia_manual_072014 (Accessed:
16 April 2016).

Martino, R., Foley, N. and Bhogal, S. (2005) ‘Dysphagia after stroke: Incidence, diagnosis, and pulmonary
complications’, Stroke; a journal of cerebral circulation. 36(12), pp. 2756–63.

Mann, G., Hankey, G. and Cameron, D. (1999) ‘swallowing function after stroke: Prognosis and prognostic
factors at 6 months’, Stroke; a journal of cerebral circulation. 30(4), pp. 744–8.

Hartelius, L. and Svensson, P. (1994) ‘Speech and swallowing symptoms associated with Parkinson’s disease
and multiple sclerosis: A survey’, Folia phoniatrica et logopaedica : official organ of the International
Association of Logopedics and Phoniatrics (IALP). 46(1), pp. 9–17.

McGleenon, B, Steele, IC & Passmore, AP 1997, 'Dysphagia, dysarthria and falls in an elderly man'
Postgraduate Medical Journal, vol 73, no. 860, pp. 321-2.

Chadwick, D.D., Jolliffe, J. and Goldbart, J. (2003) ‘Dysphagia management for adults with learning disabilities:
Caregiver knowledge and barriers to their adherence’

Calis, E. and Veugelers, R. (2008) ‘Dysphagia in children with severe generalized cerebral palsy and intellectual
disability’, Developmental medicine and child neurology. 50(8), pp. 625–30.

Anon (2003) Cerebral palsy and Dysphagia therapy. Available at:
http://www.cerebralpalsysource.com/Treatment_and_Therapy/dsypagiatherap_cp/index.html (Accessed: 16
April 2016).

Royal Children’s Hospital Melbourne (RCHM) (no date) Kids health Info: Nasogastric tube - insertion of.

Cleveland Clinic (1995) PEG Tube, Percutaneous Endoscopic Gastrostomy. Available at:
https://my.clevelandclinic.org/health/treatments_and_procedures/hic-percutaneous-endoscopic-
gastrostomy-PEG (Accessed: 17 April 2016).

Choices, N. (2015) Dysphagia (swallowing problems) - treatment - NHS choices. Available at:
http://www.nhs.uk/Conditions/Dysphagia/Pages/Treatment.aspx (Accessed: 16 April 2016).

Stewart, D. (2016) 4 March.

Statters, T. (2016) 17 March.

Tube feeding Blog: Pump vs Bolus Feed (2009) Available at:
https://www.google.co.uk/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&ved=0ahUKEwj21oy5opbMAhUG
vRoKHa7qCPQQjhwIBQ&url=http%3A%2F%2Fwww.ausee.org%2Fapps%2Fblog%2F&psig=AFQjCNFW3PoZklL_
_zIcoKHUDYHvRg_1AQ&ust=1461002966006836 (Accessed: 17 April 2016).

Statters, T. (2016) 17 March. Fig. 1, 3-8

Bella (2009) Tube feeding Blog. Available at: http://www.ausee.org/apps/blog/ (Accessed: 17 April 2016

Appendix

A. ‘The motor and sensory nervous system being intact’ is when the sensory system will
respond to food in the oesophagus and the brain recognises this, and will then send
a message to tell the muscles in your neck to swallow

B. ‘Pneumonia has a considerable cost to healthcare’ – because drug companies have
realised that the drug Doxycycline (also used for more common illnesses such as
bronchitis) is in high demand so they have increased the prices.

C. ‘Non-oral’ feeds are a way to consume food, not through the mouth, often using
tubes that have been inserted directly into the stomach.

D. ‘Aspiration pneumonia’ is an inflammation (usually due to an infection) of your lungs
and bronchial tubes that occurs after you inhale foreign matter. It's also known as
anaerobic pneumonia. This condition is caused by inhaling materials such as vomitus,
food, or liquid.

E. A ‘speech language therapist’ (SLT) is a healthcare professional who works closely
with babies, children and adults who have various levels of speech, language and
communication problems, and with those who have swallowing, drinking or eating
difficulties.

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