USER INVOLVEMENT OF PATIENTS WITH EATING
DISORDER
The Design Process from User needs to Prototype
Marie Sjölinder, Kristina Höök, Jarmo Laaksolahti
SICS, Box 1263, SE-164 29 Kista, Sweden
Liselotte Jansson, Cecilia Bergh, Per Södersten, Modjtaba Zandian
AB Mando, Box 4006, SE-141 04 Huddinge, Sweden
Keywords: Design, User needs, Interactive Treatments.
Abstract: The aim of this work was to investigate different methods for involving patients with eating disorders in the
design process. According to the specific needs of this group of patients four main design goals were set up
for the system. These were: Providing an artificial case manager able of answering questions and of
interacting with the patient; Enhancing motivation to get well; Providing distraction from the disease;
Providing an appealing environment that the patients find interesting enough to use for a longer period of
time. To meet these requirements several methods for involving end-users were used including “Cultural
Probes”, “Repertory Grid Technique” and ”Wizard of Oz”. This paper describes our experiences of using
these methods when developing a system for patients with eating disorders. The methods and the tasks used
in the different studies also turned out to be a distraction away from the disease, which shows the potential
of making the development process a part of the actual usage. The patients’ enthusiasm regarding the tasks
in the studies also showed the importance of using methods suitable with respect to the symptoms of the
disease and tasks that the specific group of patients find interesting and meaningful.
1 INTRODUCTION
There is a great need for treatment of eating
disorders with lasting effects. For a long period of
time the recovery rate among patients has been low.
For example, a patient with anorexia has less than 50
percent chance of recovery within 10 years
(Södersten, Bergh & Zandian, 2006). Eating
disorders are also quite common, The National
Institute of Mental Health (NIMH) estimates that 5
to 10% of the U.S. population has an eating disorder
of one sort or another. In addition to the suffering on
a personal level, the existing treatments are very
time consuming and expensive. These patients suffer
from a disease that has taken over their entire life,
and all their daily activities are centred on eating and
dieting. They are also ambiguous towards getting
cured since they have strong fear of gaining weight.
The fear leads to a constant desire to have certain
questions answered in terms of assurances related to
weight and eating. This need of assurance and
information could be provided for in new
complementary ways, in addition to traditional
treatment. The use of computers and the Internet
along with traditional treatment is a growing
phenomenon that could provide extended help to
people suffering from different psychological
disorders. These electronic environments could also
provide complementary benefits in terms of giving
the patients help and information around the clock.
They could also contribute with pleasant experiences
in terms of providing rich and enjoyable design that
the patients could explore or find distraction within.
Computer supported treatment has previously
been used within, for example, cognitive therapy
(Klingberg et al., 2002; Carlbring, 2004). One
further way to extend this therapy and to provide
treatment can be through the use of rich interactive
environments inspired by applications related to
entertainment, such as computer games. These
environments consist of, for example, 3D-
animations and artificial characters. Artificial
85
Sj
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olinder M., H
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o
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ok K., Laaksolahti J., Jansson L., Bergh C., S
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odersten P. and Zandian M. (2010).
USER INVOLVEMENT OF PATIENTS WITH EATING DISORDER The Design Process from User needs to Prototype.
In Proceedings of the Multi-Conference on Innovative Developments in ICT, pages 85-92
Copyright
c
SciTePress
characters can also have motivational effects since
they create a sense of confidence (Berry et al., 2004;
Coyle & Matthews, 2004). DeRosis et al. (2005)
have explored the use of artificial characters within
the domain of eating disorders. Their system
consists of an artificial counsellor that through a
dialogue with patients gives advice about healthy
eating habits. However, their efforts have mostly
been geared towards creating an emotional
presentation of information in order to increase the
sense of believability in the artificial character.
The work described in this article has been a co-
operation between a research institute for computer
science (SICS, Swedish Institute of Computer
Science) and a clinic that treats patients suffering
from eating disorders (the Mandometer clinic in
Stockholm). The aim has been to develop an
interactive environment for patients with eating
disorders. The interactive environment and the
functionalities are based on the treatment at AB
Mando. This treatment has its main focus on re-
educating patients how to eat properly and on
motivational talks held on a regular basis with a
personal case manager. The method has been
successful and the probability of recovering at the
clinic is 75% (Bergh et al., 2002).
The purpose of this work has been to develop a
prototype that could be a part of treatment of eating
disorders. The design was based on a 3D-
environment consisting of artificial characters. The
game-like approach was chosen since we wanted to
make the environment appealing to the intended user
group. If a system like this should be useful it is
important that the patients find motivation and joy in
using it and return to it on a regular basis.
From a research perspective the aim with the
system developed was to investigate how interactive
environments like this could be used in the treatment
of eating disorders, and how an interactive
environment and the use of artificial characters
could be used with the aim to answer questions
about a disease, contribute to distraction away from
the disease and to enhance motivation to get well.
Another aim with this work was to explore how
to apply methods for user-centred design in
situations where the user group is suffering from a
disease affecting their participation in the process.
User-centred design is well established, however,
the methods had to be adjusted, and other methods
had to be used as well, when designing for user
groups with disease related behaviours. Certain
demands are placed on the methods used, for
example, it is important to use methods that the
patients find interesting when lack of motivation is a
part of the disease.
2 DESIGN GOALS
Based on the specific needs of patients with eating
disorders four main goals were set up for the system.
During the entire process the design goals were
taken into consideration to ensure that they were met
by the final version of the prototype.
1) Providing an Artificial Case Manager: The
most important aspect of the system was that it
should contain an artificial case manger able to
answer questions in a trustworthy way. Since the
patients have constant worries about their weight
and what they should eat it was also important that
the case manager could disrupt ruminating questions
and thinking.
2) Enhancing Motivation: Motivational aspects
could further be affected by mixed feelings towards
getting well due to the unfounded fear of the patients
that getting well also will mean that they will
become fat. The use of computers could, due to
illness, also be affected by the decreased motivation
to participate in different every-day tasks. The
challenges for a system like this were to both find
ways to motivate the patients to use the system, and
to include aspects and functionalities that within
themselves could provide an overall motivation to
fight the disease, to get well and to look at life in
more positive way.
3) Providing Distraction: The life for this group
of patients has become very narrow due to the
disease and everything has become focused around
eating and dieting. One way of supporting these
patients is to provide them with tasks and things to
do that serves as distraction away from thoughts
related to the disease. The challenge related to this
design goal was to find functionalities to include in
the system that the patients found interesting enough
to actually serve the purpose of distraction.
4) Providing an Appealing Environment: In
order to make a system like this capable of providing
support and actually work as a complement to the
treatment it will, of course, be crucial that the
patients find the system appealing and that they use
it repeatedly over a period of time. To meet this goal
with this group of patients, mainly young girls with
reduced motivation, the environment has to be
entertaining and fun to be in and to use. The
environment should therefore have traits similar to
other interactive environments that these patients
normally use, such as games and on-line
communities.
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3 DESIGN PROCESS
The problem description that served as a starting
point for this work was given in a broad sense. The
design challenges consisted of narrowing this down
to functionalities and design demands that actually
could be implemented, but at the same time meet all
the design goals mentioned earlier. One aim with
this work was to investigate and study a set of
methods, which situations to apply them in and how;
and also how these methods should be applied with
respect to this particular user group. Based on the
design goals an iterative design process was
conducted, and the entire work was conducted in
close cooperation with the patients that also
provided us with feedback on the methods that we
used. The design methods used in the project
included or was inspired by: Cultural probes (Gaver
et al., 1999), Repertory Grid Technique (Fallman &
Waterworth, 2005) and Wizard of Oz (Dahlbäck,
Jönsson, & Ahrenberg, 1993). Other design methods
were also used within the project; due to limitations
in space only the largest studies are presented here.
3.1 Investigating User needs
by the use of Cultural Probes
The design goals of providing functionalities that
could provide motivation and distraction in an
appealing environment were addressed by a study
using the method “Cultural Probes” (Gaver et al.,
1999). With this method the participants are given
probe packages with items encouraging them to be
creative and playful when solving tasks in a self-
reporting manner. This is an engaging method to
involve users in the design process in areas where it
can be difficult to research by other means. We
chose this method since it would capture issues in
the patients’ lives that are positive and that will
contribute to their recovery. Instead of observing
them in their current atypical situation without social
interactions and suffering from maladaptive
behaviour. By using this method we aimed to get
designing ideas of how to encourage and motivating
the patients to recover.
Seven females patients participated in the study.
The patients were selected on the criterion of getting
a mixed group of patients from the clinic and that
the patients should be in-care patients or frequent
day-care visitors.
In the study the patients got a cardboard box
wrapped as a present. The box contained a disposal
camera, a blank diary, a glue stick, a pair of scissors,
a set of colour pens, pens, pencils, stickers, a
newspaper and a magazine (see figure 1).
Figure 1: The material in the box.
The patients were given one task every day for
four days. During the study, we changed the cameras
and gave the patients previously taken photographs
back printed on paper.
The different tasks were:
Day 1: “Use the camera to get pictures of, and
the diary to describe things you enjoy or find
distracting.”
Day 2: “Use the camera to get pictures of, and
the diary to describe things you miss or long
for.”
Day 3: “Use the camera to get pictures of, and
the diary to describe things making you fight the
disease.”
Day 4: “Choose some of your previously taken
pictures and paste them in the diary where you
think they best illustrate your previously written
text and possibly add some comments.”
In order to solve the tasks the patients were
encouraged to fill the diary by using the material in
the cardboard box and also to take pictures with the
cameras. They were also encouraged to solve the
tasks in their own personal way. The only obligation
was to paste the note describing the task of the day
as a headline, on a blank sheet in the diary and to
take at least five pictures with the camera to
illustrate the headline.
The patients had devoted large amounts of time
on the tasks and their diaries contained many
creative and colourful entries describing important
issues in their lives. The most frequently mentioned
items in the diaries, regardless of task, were the
family, friends, travelling, reading, sports, pets,
health and music.
Based on the results from the Cultural Probes
study a brainstorming session was held. The aim
with this session was to develop a number of design
suggestions for different functionalities that could
meet the design goals in terms of providing
motivation for recovery and distraction away from
the disease. However, it should be pointed out that
this method aims to capture the participants’
subjective experience of different issues and
USER INVOLVEMENT OF PATIENTS WITH EATING DISORDER - The Design Process from User Needs to Prototype
87
situations, which in turn provide input to design of
artefacts and interfaces.
Many ideas came up during the brainstorming
and only a few of them could be described or
implemented. One idea that was kept all the way
into the final version of the prototype was the need
for having more than one character. The diversity of
the design goals, in terms of providing answers and
convey trust, enhance motivation to get well and to
provide distraction away from thoughts related to the
disease, made it impossible to incorporate all these
in one character or functionality.
3.2 Appearance of the Characters
and the use of the RGT Method
To be able of providing a trustworthy artificial case
manager, and appealing artificial characters for
motivation and distraction a method inspired by
“Repertory Grid Technique” (Fallman &
Waterworth, 2005) was used. The method is based
on a selective process where different types are
compared and described according to their
similarities and dissimilarities. This method was
chosen since it provided the opportunity for the
patients to describe their subjective experiences
regarding how they perceived the characters.
As a starting point we produced a wide range of
different types of drawn characters to test on the
patients. A professional illustrator produced the
characters as black and white hand-drawn sketches.
Five patients were shown hand-drawn sketches
of 24 characters, divided into four categories, three
categories of human-like characters (women over
the age of 30, women 20-30 years old and men over
the age of 60), and one category of animal-like
characters. Beside asking the patients to describe the
characters, the patients were asked to rate how much
they liked each character (scale 1-9), and to which
extent they would prefer talking to the character
(scale 1-3).
The results regarding the human-like female
characters women over the age of 30 seemed to be
most appealing. However, the characters of this
category were getting the lowest score on “the want
to talk to rating”. Thus, it seemed as even though the
patients fancied the characters visualised as women
over 30 years of age, they preferred to talk to the
younger ones between 20 and 30 years of age.
This results was also supported in the discussion
with the patients, and the conclusion was that a good
artificial case manager should not be too young
(over 30 years of age), which would guarantee
experience and knowledge, but look as up-to-date as
the younger category (women between 20 and 30
years of age), which would guarantee that you would
like to talk to her about anything. The best-liked
women from the case manager categories are
presented in figure 2.
Older than 30 years
20-30 years of age
Figure 2: Best liked case manager characters.
The comments regarding the category of older
men (category 3) were that they seemed friendly.
They were ascribed traits and discussed in terms of
being nice, wise and as interesting storytellers. The
most popular man is presented in figure 3. The
group of elder men seemed about equally popular as
potential talking partners (m=1.8) as the group of
women over 30 years of age.
The animal-like characters (category 4) were the
most popular category in the study (m=7.2). To meet
the design goal of providing distraction, it was
important to create a character that the patients
fancied and enjoyed to interact with, otherwise it
would not provide the intended distraction. The most
popular individual of all categories was the sheep
(see figure 3).
The character for motivation
The pet for distraction
Figure 3: The characters for motivation and distraction.
3.3 Developing the Dialogue
for the Artificial Case Manager
using WoZ
To meet the design goal of providing an artificial
character that could provide trustworthy answers to
the patients questions the Wizard of Oz (WoZ)
method was used. It is a method used to test device
design and techniques and functionality before it is
implemented in a system (e.g. Dahlbäck, Jönsson &
Ahrenberg, 1993). The method is based on using a
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human to simulate the response of a system. The
"wizard" sits in a back room and simulates the
system’s responses to the user.
Based on the WoZ method we wanted to collect
material to a database in terms of frequently asked
questions as well as examples of how patients would
be expressing themselves when “chatting” to an
artificial case manager. Based on ethical reasons we
informed the patients prior to the WoZ session that
the replies were not automatically delivered by the
computer but written by a real case manager sitting
in another room. However, neither patient nor case
manager were informed about the identity of the
other person.
Sixteen patients were participating, 2 males and
14 females. The patients were told to ask anything
they wanted by writing freely phrased questions in a
“chat window”. They were also asked to imagine
that they were talking to the artificial case manager
seen on the computer screen. Further, they were
informed that the questions would be saved in a log-
file to be used in the design of a dialogue system for
clinical use. No time limits were set for the session.
After the session the patient was interviewed. In
the interviews, the patients expressed their
appreciation of being able to ask questions
anonymously. They felt that this fact made it easier
for them to ask about things they had considered
being embarrassing and private.
The case managers acting like wizards were also
asked about their opinions. All had enjoyed the
method of communicating with the patients, by
“chatting”. Several thought the patients were more
attentive and interested than during traditional face-
to-face sessions. They also thought it was an
excellent opportunity for the patients to get a second
opinion from someone else than their regular caser
manager and thus be convinced of the accuracy in
the replies, e.g. that it is possible for them to eat
without getting overweight.
4 THE FINAL VERSION
OF THE PROTOTYPE
The results from the Repertory Grid study showed
that the patients wanted the artificial case manager
to be a woman older than 30 but with a modern look.
Based on this, the patients were asked to select
between a new selection of sketches of case
managers. The preferred character of this selection
shows in figure 4.
Based on this version, a 3D-model was
developed. However, due to limitations, both of the
Figure 4: The most preferred character.
software and to resources, some simplifications were
made. The 3D-model was also discussed several
times with patients at the clinic and the appearance
was changed according to their suggestions. The
final version of the artificial 3D case manager is
presented in figure 5A. The character with the
function of a case manager was placed in the living
room of an apartment.
To fill the design goal of making an appealing
environment and the patients’ reluctance against
hospital-like environments a 3D-environement
looking like an apartment was developed, figure 5B.
The apartment consisted of two rooms, a hall and a
balcony.
The diversity of the design goals, in terms of
providing answers and convey trust, enhance
motivation to get well and to provide distraction
away from thoughts related to the disease made it, as
mentioned, necessary to include several characters
within the system, each of them with functionalities
meeting some of the design goals, but not all of
them.
Beside the case manager a character for
providing motivation was realised by a character
looking like an old wise man. The man, who was
placed on the balcony of the apartment, delivered
encouraging quotations when clicking on him, figure
5C. The aim was that the character would say
meaningful and encouraging things about life. The
quotations were selected by a group of users that
ranked 40 aphorisms on a scale. The 23 most liked
aphorisms were chosen as material for the character.
The design goal set up to enhance the patients’
distraction also was included in the system. It was a
pet that had been designed based on the users
suggestions, and it had the appearance of a sheep. It
was kept in an enclosure of glass looking like an
aquarium to make the users curious, see figure 5D.
The pet had the function of a small game where the
user could take care of and play with the sheep.
During the work with this part of the system, the
patients were very engaged and came with many
suggestions. Some of these were implemented in a
sub-application.
USER INVOLVEMENT OF PATIENTS WITH EATING DISORDER - The Design Process from User Needs to Prototype
89
A) The character for
answering questions
B) The environment
C) The old wise man for
motivation
D) The game for distraction
Figure 5: The final version of the prototype.
5 USER FEEDBACK
A user feedback study was conducted at AB Mando
during three weeks of time. During this phase the
patients had free access to computers located at the
clinic. The only criterion for inclusion was that the
patient should visit the clinic frequently (everyday or
at least almost everyday) during the weeks for the
study.
Six patients participated in the study, they were
all young women and their average age was 17
years, Before the study started the patients were
given instructions to use the prototype at least twice
a week during the test phase, and also to write down
comments about the prototype. After the test phase
semi-structured interviews were conducted with the
patients, and the data from the log-files were
analysed.
5.1 Usage and Overall Opinions
The overall attitudes during the interviews were
positive. All patients in the evaluation thought that
the prototype was easy to use and that it worked well
without technical problems.
All patients in the evaluation, except for one,
said that they would like to have access to the
system on a permanent basis. They also wanted to
have access to the system both at the clinic and at
home. However, the purpose with the usage would
be different depending on location. At the clinic the
main purpose would be for distraction, but at home
the system would be used for asking questions to the
artificial case manager.
5.2 The Artificial Case Manager
and the Dialogue System
None of the patients in the evaluation made any
judgements regarding the looks of the artificial case
manager since they had focused on other things in
the system. However, during the interviews, it was
pointed out that the visualisation of the artificial case
manager was important since it would have been
boring to only get answers delivered in a textbox.
With respect to the dialogue system and its
capacity to provide correct answers to the patients’
questions, there was a hit rate of .35. Of the .65
answers that were wrong .19 was explained by the
fact that the question did not exist in the database
and .46 was explained by failure to interpret the
question.
The patients thought the length and content of
the replies of the questions were appropriate and that
the content was highly relevant. However,
sometimes the answers were too medical or too
general. The patients thought that the dialogue
lacked the possibility to talk any deeper of feelings
and emotions, and that the system/dialogue should
provide more comfort when feeling sad.
5.3 Motivation and Distraction
The sheep and the old wise man were included in the
system to provide distraction and motivation. The
patients in the evaluation liked the appearance of
both.
The old wise man delivering motivating
quotations was, for some of the patients, difficult to
find in the environment since he was located at the
balcony. However, the things he delivered were very
much liked by the patients, even though the number
of different quotations was found to be too low. This
was not surprising as the aim of the work was not to
deliver large amounts of content to the system.
When trying to provide distraction it is important
that the content of the application is well suited for
the particular target group. This sub-application and
the appearance of the character were developed in
close cooperation with the patients. As a result of
this, the patients also liked the character and found
the sub-application enjoyable to use. The interaction
with the sheep provided distraction as far as the
limited amount of content could do.
The 3D-environmnet developed for the final
version of the prototype had been redesigned
extensively to convey a feeling of a home
environment. All patients in the evaluation found the
environment attractive, however they thought that it
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could be more colourful and that it should have more
soft decorations such as pillows and blankets.
6 DISCUSSION AND GENERAL
CONCLUSIONS
6.1 Achievement of the Design Goals
Providing an Artificial Case Manager: The most
important aspect of the system was that it should
contain an artificial case manger able to answer
questions in a trustworthy way. With respect to this
design goal we reached quite far, even if the systems
dialogue section needs to be adjusted and improved.
The patients trusted the answers even though they
thought they, to some extent, were too medical and
lacked emotions. On the other hand, the medical
approach in the answers serves the purpose of
disrupting ruminating questions and thinking with
respect to worries about weight and what to eat.
Enhancing Motivation: The design goal of
enhancing the patients’ motivation could both be
long-term and short-term. The only aspect that was
possible to investigate, at this stage, was short-term
motivation and whether the character of an old wise
man could make the patients look at life in a little
more positive way for a short while when talking to
him. However, the patients actually liked the things
this character said and they felt encouraged and
strengthened by his words of wisdom.
Providing Distraction The design goal related to
this aspect was to find interesting functionalities to
include in the system. The functionalities had to be
interesting enough to actually serve the purpose of
distraction. For this design goal it was extremely
important to take the profile of the user group into
consideration. The sheep-game and the appearance
of the character were developed in close cooperation
with the patients. As a result of this the patients also
liked the character and found the sub-application
enjoyable to use, even though it was not possible to
provide a large amount of content within the
framework of this project.
Providing an Appealing Environment: Within
this work, much effort had been placed on actually
finding functionalities and traits that are appreciated
and liked by this user group. The work with the
patients also provided much input about further
functionalities to include in the system. The design
goal of providing an appealing environment must be
considered to be met to a quite great extent. The
patients overall positive judgements about the
system and its functionalities and the patients
comments about wanting to have access to a system
like this in their every-day life support this
conclusion.
6.2 The use of Different Methods
The first method we applied was based on the use of
“Cultural Probes” (Gaver et al., 1999). This method
was selected to capture input to the design goals
related to finding functionalities that would enhance
the patients’ motivation to fight the disease and to
find distraction from thoughts related to the disease.
By asking the patients to describe good tings in life
and things they long for, instead of observing their
present life or behaviour, the material from this
study could be used as positive input to the design
process. Within this study the patients found the
study tasks themselves also entertaining and
therefore they also provided distraction away from
the disease. One explanation to why this study
worked so well even though that this group of
patients normally lack the ability to engage in tasks
not related to food intake might be that very clear
instructions were given to the patients. These
instructions made the tasks creative but they also
provided enough information for the patients so that
they could conduct the tasks without being affected
by the disease related difficulties in engaging in new
activities that demands a large amount of initiative
from the individual. One problem with using this
method though, at least in this way, could be that it
only attracts a certain kind of people. The
involvement place high demands on the participants’
engagement, and it might be the case that only
people fond of scrapbooking activities will
participate.
The study that investigated the appearance of the
characters was inspired by the “Repertory Grid
Technique” (Fallman & Waterworth, 2005). This
method was chosen with the aim of letting the
patients describe their own subjective way of
perceiving the appearances and the different traits of
the characters. Since the things to be described were
humans or characters of different kinds a variety of
interpretations could be made, therefore an open
method seemed to be a relevant choice. However, in
our case it also turned out that this complexity
contributed to difficulties in using the method. When
asking people to group something complex as
humans a more detailed instruction about what the
grouping should be based on is needed, otherwise
there is risk that the characters will be grouped or
USER INVOLVEMENT OF PATIENTS WITH EATING DISORDER - The Design Process from User Needs to Prototype
91
described upon very simple traits related to looks
such as hair colour or hair style.
The WoZ method was appropriate to use for the
purpose of gather dialogue. Besides providing
material for the database, this study also showed the
need among the patients for being able to ask
questions anonymously. Despite the ethical
considerations that made us reveal to the patients
that there was a human on the other side, the study
worked well and the patients forgot that they did not
interact with a system or, at least, did not bother by
this fact. However, when using this method for
developing systems for treatments, it is important to
be aware of that patients can reveal issues that could
be a hazard to the patient’s health if they are kept
anonymous.
6.3 Concluding Remarks
It is important to state that the aim with this work
only was to develop a prototype and to investigate
different methods for user involvement. The
knowledge gathered during this work was intended
to serve as a starting point for the next phase of
developing a system for patients with eating
disorders.
One of the most important results regarding
design of environments like this was the patients’
opinion about the 3D-design/interface. The patients
pointed out the importance of colours and homelike
environments since several of them had spent time at
hospitals against their own will. Further, the studies
showed that it is important that when using an
artificial character to answer questions as a
complement to the treatment for this group of
patients the character has to have an appearance and
an age that conveys trust but also that it is young and
modern enough to be someone that the patients feel
that they would like to talk to. Finally, the patients’
enthusiasm for the Cultural Probes study supports
the idea of using the design process as a direct
means to an end. In this case, using the design
process as a part of the treatment, an interesting
aspect well worth investigating further.
ACKNOWLEDGEMENTS
The authors would like to thank AB Mando and their
staff. The work is based on their method for treating
eating diseases, and all the work has been conducted
at the clinic in cooperation with their staff. We will
also thank all the patients at the clinic that have
participated in the studies. The funding for this
project was given by VINNOVA (Swedish
Governmental Agency for Innovation Systems),
along with AB Mando and SICS.
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