MDes Business Document

Catrina Graffin B00341429

Background/History

The title of this project is Chew. Its aim is to raise awareness about a condition called

Tracheo Oesophageal Fistula (TOF) and Oesophageal Artesia (OA). TOF/OA is a condition

where a child is born unable to swallow. This project will focus on the specific areas that may

become of a concern once the child is of school age and aware that they are different from

others. Its purpose is to educate and emotionally assist the children in social situations

where the need for support becomes apparent.

TOF and OA are rare congenital conditions of the Oesophagus (food pipe) and/or trachea

(airway). With TOF the bottom of the oesophagus is joined to the windpipe, and with OA the

oesophagus ends in a blind pouch, unconnected to the stomach. The only way to correct this

problem is with surgery that is required normally within days of birth. Some children undergo

additional surgical interventions throughout their lives and many may have difficulties

swallowing, digesting food, reflux and respiratory problems. As the child gets older it is these

symptoms along with ongoing surgery and other health problems can add a great deal of

anxiety to both the child and parent.

I want to help breakdown the stigma of the medical condition and fill in the missing gaps with

a product that can familiarise children and carers with appropriate and useful information.

This project will concentrate on the main general aspects of the condition, which is often

difficult to explain.

My Goal

What prompted this project was my son who was born with TOF/OA, he is now 6 and is

attending Primary School. Leaving the security of the home and entering the school world

has been a daunting time for both my son and I. He realised that he was different from other

children in his class as he was the only one who had help at snack and meal times. His

meals have to be carefully planned and prepared in advanced and supervision is needed

whilst eating. In these situations, he is usually reluctant to eat, as he’s all too aware of the

potential possibility of choking events and the attention this can attract. He requires extra

time to eat food in a safe manner and is often the last person to complete the meal. Cold

weather greatly affects his respiratory systems causing chest infections and of course the

dreaded TOF cough. This can lead to him missing out on valuable school time. Every day he

takes a regular list of medication and frequently asks questions about all the hospital

appointments. He indulges in information about his condition and strives to inform all his

class mates about it.

At present there is nothing available for the children to view, almost all information is textual

and targeted at parents and/or medical professionals. I would like to change this and create

a product designed for specifically for children that would be not only appealing but

educational. Based on my son’s needs and feedback I received from other TOF/OA parents I

have refined this project and pinpointed the areas of need and importance to the child,

parent and carer. I aim to create an iPad App to be informative, interactive and fun. The

main topics of focus are Eat, Play, Medicine and Hospital. Eat will include all the issues

surrounding food, safe and non-safe foods, the possibility of choking episodes, and of

course the panic and anxiety of school and social events. Play will highlight difficulties

around the winter months with respiratory issues, the TOF cough, and the best way to help

with this. Medicine will feature the general types of that are commonly used, what they do,

how they help, and with a little reminder of when and how to take them. Hospital will involve

meeting the care team the app may introduce a surgeon, an anaesthetist and a doctor.

Based on the child’s selection the app will break down their roles and the importance what

they do so that the child not only becomes familiar with these roles but has a basic

understanding of how they help. The aim of this module of the app is to build a trust between

the child and care staff they encounter during their frequent check-ups and help ease any

anxieties. The children will interact and have fun with this app, whilst learning at the same

time, there may be a quiz at the end to test their knowledge on what was displayed. It will be

designed based specifically on TOF/OA and will help the child to identify, learn and grow

with it.

My Passion

Raising awareness for this condition has been my passion since the birth of my son and as

he has grown the areas I wish to highlight have changed. When he was first diagnosed with

TOF/OA, I only received a few internet print offs at the hospital which came from the TOFS

(Tracheo Oesophageal Fistula Support) Charity. At first these were quite alarming and

raised concern as it was so difficult to comprehend what the condition was. So whilst

completing a Multimedia Computing & Design Degree I took advantage of open topic

projects and used them as opportunities to do further research. I designed a website aimed

at new parents who have encountered the condition for the first time. My goal was to assist

these parents by providing all the important information, links and support available on one

site rather than having them search through the several to find what was relevant to them. It

was visually appealing and easy to navigate and more importantly it cut out all the middle

men and was from a parent’s perspective not a medical one.

As my son has gotten older it is not so much educating others and assisting new parents

that are my concern, but now to assist the child through all the areas of their life where their

different needs are apparent. It can be difficult to explain the reasons behind hospital visits

and also answer all the questions that follow. The information that is currently available is not

appropriate for a child to look at or read, and it does not touch on the emotional effects of

living with this condition every day.

Guest Speaker: Trisha Deery

Throughout the entrepreneur class guest speakers came and gave talks on about how they

grew their idea into a business. The speaker that stood out for me was local children’s

illustrator and author Trisha Deery, publisher of ‘Miss Rosie Red’. She told us about her

journey which was a particularly great insight to the world of children’s illustration to a novice

such as myself. I found her talk inspiring, educational and it gave me alot to think about.

Trisha showed her own illustrations and sketches and talked us through the process how to

develop a book and how it developed into an app. Trisha is now currently taking her

character Rosie and developing it even further in animation form, which gave me great

insight in to how far a great idea can be taken. Trisha’s’ influence has always been children,

she enjoys how they perceive the world and everything around them, how they speak at

times, being direct and to the point and with such innocence. She demonstrated how she

thought like a child when designing and tried to get into their frame of mind, seeing things

from their perspective and making drawings childlike.

This directly ties into the first title of my project ‘Through a child’s eyes’ and is the same

process I have been trying to put into motion when drawing and designing my app. Trisha

was very open about the progression of her project, from the creation of her character until

the present, signing publishing rights to Dog Ears and all the problems she endured. How

she stood by her principles, against opposition and still has her role to play. For example she

still has full control over her character design and final say on alterations. Trisha’s characters

are her own hand drawings they are a distinctive aspect of her work and children respond

well to them. These are techniques I have tried to put into practice when designing the

character in the likeness of my son by keeping the sketchy hand drawn feel. The discussion

was useful in many ways and made me realise that I may have to come to terms to the fact

that in order to get this app out there I may have to give up a percentage of it or even

change my designs.

Target Market

With one child in every 3,500 born with TOF/OA my target market will be children of school

age and carers. Based on information gained from questionnaires filled out from the parents,

88% own an iPad or a tablet. 100% say they download apps for their children. 87% would

use a visual product aimed for the younger children with TOF/OA. With this in mind and 11

support groups both nationally and internationally I want to make the app accessible to all,

as families are global and in contact via the charities support groups. I will seek validation

from medical professionals who have encountered children with this condition and aim to

receive constructive feedback to help improve with the development of this application. I

have been in contact with the UK support group TOFS who have supported the

questionnaires and will be updating them on future development of the project.

Whilst there are many other medical and health apps out there like respiratory and feeding

apps none of these focuses specifically on TOF/OA alone.

Funding

There are several funding bodies available that I could apply for. I am considering contacting

C-TRIC Clinical Translational Research and Innovation Centre who are based in Altnagelvin

Hospital. C-TRIC is Northern Ireland’s healthcare innovation hub which was developed to

bring together academics, industry and clinicians to develop solutions to areas of unmet

clinical need. Last year a fellow graduate from M.S.c in Design and Communications

Siobhan Kirrkamm came up with the idea of a healthy eating app. She secured support

through the Creative Industries Innovation Fund (CIIF) run by the Arts Council of Northern

Ireland to develop further her 3square concept app. Siobhan then secured further support

through C-TRIC’s Bio-entrepreneur programme to explore how she might further develop her

product range within a healthcare context.

The bio-entrepreneur programme is a new initiative set up by C-TRIC which is designed to

support entrepreneurs, innovators and start-ups to develop their innovations for better

healthcare whether they are software related, medical devices, diagnostics or therapies. The

programme has now closed but I may still contact them with this project as it could identify

an area of unmet clinical need.

Last month I attended a talk with Jennifer Cooke and Fergus Beagley about the 25K Awards,

this is a competition in Northern Ireland which is open to Masters and PHD students as well

as staff and researchers at the University of Ulster. This would be a good venture and a

possibility for funding. This could be a great opportunity to have a chat with them and see

the suitability and potential viability of the app. Two aspects I found interesting was they are

looking for a project that will make a difference and can be sold internationally, I believe that

this project has the potential and that Chew meets the criteria outlined. The closing date is

22nd April 2013. I like the fact that as a Masters student I would own the Intellectual Property

(IP) rights giving me some say in my product and I would love the University to get involved

in development and funding. As this project is all about awareness of TOF/OA, I would like

as much help with the aid of others to make this a success and get this app out there into the

market place.

While researching the support groups I came across a post from AFAO (Association

francaise de l’atresie de l’oesophage) the French support group for Oesophageal Artesia

and Trachea Oesophageal Fistula. They recently launched a call for applications for all

research on Oesophageal Artesia. The winning project will receive €15,000 and will be

selected by its originality and relevance to the research they prefer. My project could

certainly be of interest to them and touches on an area of their preferred research. Closing

date is 20th May 2013.

To date my years of research have still not proven to find anything for the children on the

market, and the potential to be the first out there with an illustrative and informative app

concerning this medical condition is exciting.

Bibliography

AFAO (2013) Association Française de l'Atrésie de l'Oesophage. France. Available From:

http://www.afao.asso.fr/toutes-les-actualites/265-prix-fanny-afao-2013 [Accessed 10 March

2013].

C-TRIC (2013) C-TRIC Clinical Translational Research and Innovation Centre. Derry/

Londonderry. Northern Ireland. Available From: http://www.c-tric.com/. [Accessed 07March

2013].

Creative Industries Innovation Fund (2013) Creative Industries Innovation Fund. The Arts

Council. Northern Ireland. Available from: http://www.artscouncil-

ni.org/award/innovation.html. [Accessed 08 March 2013].

Dog Ears (2013) Books, Apps, Events + TV for Kids. Derry/ Londonderry, Northern Ireland.

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TOFS Charity (2013) Tracheo Oesophageal (oesophageal) Fistula Support. Nottingham,

England. Available From: http://www.tofs.org.uk [Assessed 22 March 2013].

Trisha Deery (2013) Trisha Deery. Derry/ Londonderry, Northern Ireland. Available From:

http://www.trishadeery.com/index.html [Assessed 21 March 2013].

3square (2013) The healthy eating app. Derry/Londonderry, Northern Ireland. Available From: http://www.3squareapp.com [Assessed 22 March 2013]. 25K AWARDS (2013) Northern Ireland Science Park. Derry/Londonderry, Northern Ireland.

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Goyal, A., et al. (2006). "Oesophageal atresia and Tracheo-oesophageal fistula", Archives of

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