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EMIE: Using 3D Printing to Help People
Living with Ataxia
Stéphanie Rouleau*

Marjolaine Cazes*

D.A. Interaction design

D.A. Interaction design

Université Laval

Université Laval

295, boulevard Charest Est

295, boulevard Charest Est

Québec, QC G1K 3G8 Canada

Québec, QC G1K 3G8 Canada

stephanie.rouleau.1@ulaval.ca

marjolaine.cazes.1@ulaval.ca

Tarik Benadda*

Serenela V. Valfre Piazza*

D.A. Interaction design

D.A. Interaction Design

Université Laval

Université Laval

295, boulevard Charest Est

295, boulevard Charest Est

Québec, QC G1K 3G8 Canada

Québec, QC G1K 3G8 Canada

tarik.benadda.1@ulaval.ca

serenela.vereza-valfrepiazza.1@ulaval.ca

Rémi Dupont*
D.A. Interaction design
Université Laval
295, boulevard Charest Est
Québec, QC G1K 3G8 Canada
remi.dupont.1@ulaval.ca

Copyright is held by the owner/author(s).

Abstract
A rare neurological disease is found in the Charlevoix and
Saguenay-Lac-Saint-Jean (Québec) regions: Autosomal
Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS).
This disease affects the spinal cord and peripheral nerves in
charge of movement, balance and body coordination. As the
disease evolves, people with ARSACS need more ergonomic
products to maintain a certain level of autonomy. With an
ethnographic approach, we observed that in addition to not
fulfilling the needs of people with ARSACS, these expansive
ergonomic products are not aesthetically pleasing and therefore
negatively influence the self-image of their users who apprehend
and feel the look of others upon them. In collaboration with
occupational therapists and designers, we are now introducing
EMIE, a digital service used to design and print – in 3D –
personalized ergonomic products that meet the needs of people
with ARSACS, in hopes of building a community. This service will
both raise the self-image of people with ARSACS and foster their
autonomy and social insertion.

Author’s Keywords
ARSACS; Charlevoix-Saguenay; Disease; Ergonomic products;
Independent living aid products; Community; Technology;
3D printing; Digital service ; Prototyping.

CHI 2016 Extended Abstracts, May 07-12, 2016, San Jose, CA, USA
ACM 978-1-4503-4082-3/16/05
*All authors have contributed equally to this work.

ACM Classification Keywords
H.5.2 [User Interfaces]: User-centered design,
Evaluation/methodology; H.5.3 [Group and Organization
Interfaces]; H.5.m Miscellaneous

Introduction

As the disease evolves, people with ARSACS need more
ergonomic products to maintain a certain level of autonomy.
However, it is hard for them to obtain these products without
financial help from local community service centres (CLSC) or
rehabilitation centres. Moreover, current products that help with
autonomy are only meeting the needs of people with other
motor deficiencies; elderly people, paraplegics, etc. In addition
to not meeting the needs of people with ARSACS, these
ergonomic products are not aesthetically pleasing, and therefore
negatively influence the self-image of their users, who often "not
to use it due to perceptions of stigma or issues of personal
identity" [4]. For that reason, they often refuse the ergonomic
products that are offered to them, and by the age of 40, most of
them have a mental rigidity against learning and discovering
new technologies.

Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay
(ARSACS) is one of 7 hereditary diseases found in Saguenay.
About 300 people are affected by this slow and progressive
orphan disease, and one person out of 22 is carrying the gene.
This mutation is thought to have been brought in the Charlevoix
and Saguenay regions by the founder effect, when 10,000
French immigrants arrived to colonize the land between the 17th
and 19th centuries [1].
ARSACS affects the spinal cord and peripheral nerves in charge
of movement, balance and body coordination [2]. Symptoms
start appearing around the age of two, when a child lacks
balance and falls frequently. These issues with walking only
increase with time; as early as adolescence, many people will
need a cane, then a walking frame, and by the time they reach
their thirties, adults will generally be confined to a wheelchair.
Limb spasticity, progressive loss of muscular strength and
muscle atrophy in the hands and feet make it difficult for them
to perform daily tasks like dressing, writing or walking. They find
it difficult to perform tasks that require precision. Dysarthria can
also make it harder to communicate with others.
For people with ARSACS, having a job can be a challenge, not
only because physical limitations make them less productive, but
also because of negative perceptions and discriminatory
behaviours from colleagues and employers. As a result, some
have to declare themselves as invalid, even though their
cognitive abilities are intact. At the same time, being
unemployed leads to important financial difficulty and isolation
from society [3].

For the conception of our design project, we defined three
objectives:
1.

2.
3.

Empathically observe people with ARSACS to understand the
fullness of the physical and psychosocial aspects relative to their
handicap, and how it affects them in their daily lives;
Discover how they interact with objects and technology, and
consider the emotional side of it;
Offer useful assistive technology that meets their specific needs
while considering the evolutionary aspect of the disease.

User-Centred Design Process
To better understand the daily life of people with ataxia in
Charlevoix-Saguenay, we used many ethnographic methods to
collect data, which allowed us to define the present design
opportunity and find a solution that corresponded with the
specific needs of people with ARSACS.

Literature Reviews [5]
We first conducted an analysis of the literature to expand our
knowledge on the anthropometric, behavioural, cognitive and
social characteristics of the user (ABCS) [6].

Figure 1: A word cloud representing
the reality of daily life for people with
ARSACS

EMIE
The name of our project – EMIE – was
inspired from Émilie, the researcher
specialized in neuromuscular diseases who
put us in contact with health specialists
(occupational therpists, physiotherapists
and neurologists) and most of the people
with ARSACS with whom we met.
3D Printing
Three-dimensional printing uses a
process of additive manufacturing, that
is the fabrication of a piece by stacking
successive layers of material, which
allow the making of functional objects
with precise pattern detail. Threedimensional printing uses various
technologies, namely stereolithography
and selective sintering. The fabrication
of these objects is decentralized,
therefore making them affordable.
However, the materials that can be used
are still limited and parts created
additively through 3D printing are also
limited in size. [7] [8].

Participant Observation [5]
We have met with a total of 10 men and women between the
age of 19 and 50, which allowed us to witness distinct phases of
the disease. We began the exploration phase by meeting with
people with ARSACS in their daily environment, in other
contexts and at different times of the day. We have observed
them in their daily tasks to see how they interacted with their
surroundings, and we discovered the independent living aid
products they used. We have accompanied a few people in their
car, at the restaurant, the shopping mall and the hospital. That
way, we were able to see every aspect of their day to day lives.
With this ethnographic approach, we used the AEOUT
framework to highlight tendencies throughout fives major
angles: the daily lives of people living with ataxia, the
environment in which they live, their interactions with others and
objects, the objects they use, and the space-time continuum.
With a word cloud (figure 1), we have represented the reality of
a daily life with ARSACS, which has helped us find our design
opportunity.
Interviews with Specialists [5]
To complete our observations, we conducted semi-directed
interviews with health specialists with expertise on the ataxia
disease of Charlevoix-Saguenay. We met with two
physiotherapists from a neuromuscular disease clinic in
Saguenay (Clinique des maladies neuromusculaires du
Saguenay), one physiotherapist and one occupational therapist
from a rehabilitation centre in Saguenay (Centre de réadaptation
en déficience physique du Saguenay) and one occupational
therapist from another rehabilitation centre in Quebec (Institut
de réadaptation en déficience physique du Québec). We have

also met with a neurologist and with the Director for the
Interdisciplinary Research Group on Neuromuscular Disorders at
the Jonquière health and social services centre. We first
attended an occupational therapy session with the person with
ataxia, and then met individually with the specialist, who
described to us with great detail the nature of the disease.

Design Opportunity
After various ethnographic analyses, problems arose in some
areas. We first noticed that very few independent living aid
products weren’t actually meeting the needs of people with
ARSACS, because most of them were designed for larger groups
such as elderly people and paraplegics. Most participants have
financial trouble and are unemployed, therefore as the disease
evolves and their need for ergonomic products becomes
stronger, it gets more difficult for them to obtain these products
without financial help from health and social services centres or
rehabilitation centres.
For them, these independent living aid products are not only a
clear sign that their disease is evolving, but also something that
clearly differentiates them from others. Participants have
complained that they had to step on their pride to use these
products because of how unattractive they are, and others said
they were not using them at all. We discovered that they were
highly apprehending how other people would see them.
Finally, these people feel like they have little control over their
own lives. In other words, they feel powerless. In this
perspective, we identified a need for them to reclaim their
situation with customizable ergonomic products, which are
imposed by their disease and dreaded because of the resulting
social isolation.

Solution

Figure 2: Interactive ergonomic
desk with touch interface

Figure 3: High-fidelity website
prototype

Figure 4: Organizational diagram:
collaboration between people with
ARSACS, occupational therapists and
designers

Digital Service
In collaboration with rehabilitation centres and neuromuscular
disease clinics, we are offering EMIE, a digital service used to
design and print – in 3D – personalized ergonomic products
that can be adapted to the physical condition of people with
ARSACS. Our project is inspired from an emerging technology
which allows quick access to 3D products that can be
personalized at a low cost [7]. We are also seizing the
opportunity to develop new artistic and ergonomic concepts for
these products, with help from Saguenay artists and students, in
hopes of building a community. Influenced by online
communities like Thingiverse that support the open-source
sharing of designs [4], we would like to create a free and safe
assistive technology ecosystem where concepts will be approved
by health professionals. Wrong ergonomic products can increase
musculoskeletal troubles. For this reason, this service, which
includes a 3D printer, will be managed by the rehabilitation
centre and operated by occupational therapists.
Process of the Digital Service
People with ARSACS will first have to meet with the occupational
therapist at the rehabilitation centre, or at home, to be
evaluated on their needs for ergonomic products. During the
monitoring, the occupational therapist will be compiling data
regarding the patient’s physical condition (measurements, 3D
scans of limbs, etc.) on an online profile. That way, the patient
will be able to receive personalized recommendations for
customizable ergonomic products.
The designers will then have access to this data directly in EMIE
to help them make the products. They will create products with
a 3D modeling software.

Workstation and Ergonomic Desk (figure 2)
The workstation for the digital service will be in the rehabilitation
centre. People with ARSACS will have access to it during their
routine appointments. If they were to have any trouble with the
technology, occupational therapists will be there to assist them.
This station will have interactive ergonomic desks that allow
people with ARSACS to go on the EMIE website, with the help of
touch interfaces adapted to their spasticity and trembling. To
reduce pinching movements and shoulder pain, the touch
surface interface is oversized and users can navigate with their
hands flat on the desk. To avoid any mistakes caused by wrong
movements, users will have to press any button for two
seconds, when a gauge will fill up to confirm the action. With this
digital service, people with ARSACS will have the possibility to
customize their ergonomic products by choosing between
different designs, sizes, colours, patterns, and by adding text.
Once an object has been personalized, it can be printed in 3D.
Website : Design from Home
EMIE website offers the same possibilities as the workstation,
except they can access the website from home. People with
ARSACS will also be able to order ergonomic products among
the list provided by their occupational therapist, depending on
their profile. Any other product will have to be validated by the
occupational therapist to avoid any musculoskeletal problems.
Customer Relationship Management will be used to gather and
manage the client’s information [9].
Community (figure 4) To make these products, we will
collaborate with designers from the Saguenay - Lac-Saint-Jean
region. With design students from the Jonquière CEGEP, and art
and engineering students from the Université du Québec à
Chicoutimi, we will also set up a program for school projects to
develop ergonomic products that people with ARSACS use on a
daily basis. They will have the opportunity of being sponsored by
these artists or students, who will conceive ergonomic products

Figure 5: Participatory evaluation:
acceptability and usability of elements
in the interface.

to their tastes and adapted to their profiles. The prototypes will
have to be evaluated with usability tests. This opportunity will
contribute to the integration of people with ataxia into a larger
population pool, and could possibly give place to an artistic event
where ideas could be shared. We could have help of
government of Quebec who already gives large investments in
art projects in these regions [10]. The objective is that people
can have fun customizing products they will be proud of, and
see those products in a different light. We would like to open this
free and safe assistive technology ecosystem worldwide to give
the possibility to everyone who need assistive technology and to
everyone who want to participate by creating safe ergonomic
products. We are also open to work with a 3D manufacturer or
an adaptive products manufacturer.

User Testing Results
The results from this evaluation have given us many ways of
possible improvement. We have indeed identified a few
difficulties related to the manipulation and comprehension of the
interface, and to the positioning of the screen. We found that
participants had to navigate with both hands flat on the touch
screen in order to avoid shoulder pain. We also increased the
validation delay for buttons, and we became aware that the
fringes of the tactile surface had to be at a 15-degree angle to
shorten the length of movements and thus facilitate navigation.
These modifications were made on the final prototype to simplify
gestures and therefore optimize interactions between users and
the system, all of which ensures a pleasant and intuitive
experience for users.

Ergonomic Evaluation

Conclusion

Participatory evaluation (figure 5) has allowed us to confirm the
pertinence of our solution and design choices. We have assessed
the idea’s global acceptability as well as the usability of the
ergonomic desk and certain elements of the website interface
[11].

We developed a digital service in accordance with our main
objectives: to learn how people living with ARSACS interact with
their environment to develop a useful assistive technology that
will foster their autonomy. For people with ARSACS, EMIE
symbolizes a certain psychosocial reappropriation of their own
lives. By participating in the making of the ergonomic products
they need on a daily basis, these people revalue their self-image
and take back some control over their lives. Sponsored by a
community of artists and students, they escape a certain
isolation and can become pioneers in developing trends for
assistive products. Finally, while ergonomic objects only
represent a fraction of the problems encountered daily by people
living with ARSACS, they can be part of an important victory on
the psychosocial, financial and aesthetic levels.

Usability
We evaluated both the usability of the ergonomic desk and of
the interface, using a Think-Aloud protocol [6], with six
participants at different stages of the disease. We recreated a
real use context in which the participant was seated in front of
the desk. The screen was showing the website, and on the desk
was a high-fidelity paper prototype of the touch surface. During
the user testing, the participant was asked to openly express his
comprehension of the interfaces. A Video Protocol [6] was put in
place to observe hand and eye movements from the interface to
the screen more carefully.

Evolution and Future Work  
Our digital service will have to be evaluated to verify the
implemented system’s feasibility, including people with ARSACS,
occupational therapists and the artistic community. We will also

have to create interfaces for occupational therapists and
designers.
As for future projects, we could develop interactive products
such as clothes or prostheses with integrated touch functions.
Our service could also fit into a principle of “ecologically
responsible” consumption by using recycled materials or existing
products to produce ergonomic products, which would further
diminish their cost [12]. We could also use evolving materials
whose properties change depending on different variables [7].
Finally, the digital service could also be made available to other
people affected by neuromuscular or spastic diseases such as
CVA, cystic fibrosis and partial paralysis, for whom we would
also have to identify needs. On a larger scale, our service could
expand internationally and reach out to artistic communities
from all over the world.

Acknowledgements

d'emploi des personnes atteintes d'ataxie récessive
spastique de Charlevoix- Saguenay (ARSCS) : étude
exploratoire. Revue PISTE
4. BUEHLER, E. Stacy Branham, S., ALI, A., Chang, J.,
HOFMANN, M., HURST, A., KANE, S. (2015). Sharing is
Caring: Assistive Technology Designs on Thingiverse. ACM,
[Online] http://dl.acm.org/citation.cfm?id=2702525
&CFID=750349836&CFTOKEN=14050110
5. MARTIN, B. et HANINGTON, B. (2012). Universal Methods of
Design. Beverly (MA), Rockport, 208 p.
6. Frank E. Ritter, Gordon D. Baxter, Elizabeth F. Churchill.
(2014). Foundations for Designing User-Centered Systems:
What System Designers Need to Know About People.
Springer, London, 442 p.
7. 3DNATIVES. (2015). Le premier site d’information sur
l’impression 3D. [Online] http://www.3dnatives.com/
impression -4d-la-robotique integree-aux-materiaux

We would like to thank all the participants who willingly offered a
moment of their time to guide us through our creative process.
A special thank you to Emilie, to all the healthcare professionals
and also to Jacynthe Roberge, our teacher and mentor.

8. WIKIPÉDIA. (2015). Impression tridimensionnelle. [Online]
http://fr.wikipedia.org/wiki/Impression_ tridimensionnelle

References

10. Gouvernement du Québec. (2015). Un investissement de
226 000 $ pour l’essor artistique du Saguenay–Lac-SaintJean. [Online] http://www.calq.gouv.qc.ca/communiques
/2015 /20151210

1.   DROLET, M. (2002). Étude des fonctions
neuropsychologiques des enfants et adolescents atteints de
l’ataxie récessive spastique de Charlevoix-Saguenay
(ARSCS). Université du Québec à Chicoutimi
2. BOUCHARD, J.P., RICHTER, A., MATHIEU, J., BRUNET, D.
HUDSON T.J., MORGAN, K., MELAN, S.B. (1998). Autosomal
Recessive Spastic Ataxia of Charlevoix–Saguenay. Elsevier
Science B.V. Neuromuscular Disorders 8, p. 474–479
3. TREMBLAY M., LABERGE L., MALTAIS D., DURAND M-J.,
CHOUINARD M-C., GAGNON G. (2014). Trajectoires

9. KNOX, S., PAYNE, A., RYALS, L., MAKL, S. (2007). Customer
Relationship Management. Routledge, 302 p.

11. BACCINO, T., BELLINO, C. and COLOMBI, T. (2004).
Mesure de l'utilisabilité des interfaces, Paris, Hermes Science
Publications, TIC et sciences cognitives, 280 p.
12. JOLLIET, O., SAADÉ, M., CRETTAZ, P. (2005). Analyse du
cycle de vie. PPUR presses polytechniques, 242 p.



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