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Designing for and with People with Parkinson's: A Focus on Exergaming

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Abstract

Parkinson's is a complex and multifaceted condition with a myriad of symptoms, thus, designing for and with this user group requires careful consideration. We reflect upon two studies, employing different design methodologies, relating to the design of rehabilitative exergames in Parkinson's. The first explored the concept of designing 'for' People with Parkinson's (PwP) and focused on specifications outlined by clinical stakeholders. The second used a designing 'with' approach and modified a pre-established participatory design method for use with PwP. We call attention to the importance of carrying out design work with PwP and contribute; an empathic understanding of living with Parkinson's, a set of recommendations for how to design with PwP and a set of wider considerations for developing rehabilitative exergames for PwP.
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Designing for and with People with Parkinson’s: A Focus
on Exergaming
Róisín McNaney1, Madeline Balaam1, Amey Holden1, Guy Schofield1, Dan Jackson1,
Mary Webster1, Brook Galna2, Gillian Barry2, Lynn Rochester2, Patrick Olivier1
1Culture Lab,
School of Computing Science,
Newcastle University, UK
{r.mcnaney; Madeline.balaam}@ncl.ac.uk
2Institute of Neuroscience,
Newcastle University Institute for Ageing
Newcastle University, UK
Brook.galna@ncl.ac.uk
ABSTRACT
Parkinson’s is a complex and multifaceted condition with a
myriad of symptoms, thus, designing for and with this user
group requires careful consideration. We reflect upon two
studies, employing different design methodologies, relating
to the design of rehabilitative exergames in Parkinson’s.
The first explored the concept of designing ‘for’ People
with Parkinson’s (PwP) and focused on specifications
outlined by clinical stakeholders. The second used a
designing ‘with’ approach and modified a pre-established
participatory design method for use with PwP. We call
attention to the importance of carrying out design work
with PwP and contribute; an empathic understanding of
living with Parkinson’s, a set of recommendations for how
to design with PwP and a set of wider considerations for
developing rehabilitative exergames for PwP.
Author Keywords
Parkinson’s disease; Design; Exergames; Rehabilitation;
ACM Classification Keywords
H.5.m. Information interfaces and presentation (e.g., HCI):
Miscellaneous.
INTRODUCTION
There is an ongoing agenda within HCI to bring older
adults and vulnerable user groups into the design process
[11, 17, 18, 30] as well as focused attention on age related
conditions such as dementia [27, 31]. Although the area of
Parkinson’s has received some attention [3, 5, 16, 19, 20,
33], there has been minimal work related to how individuals
with this condition might be engaged within a design
process [3, 5, 20]. Parkinson’s is a particularly interesting
user group for investigation due to the complex and
individual nature of the condition. People with Parkinson’s
(PwP) can experience a vast range of physical and cognitive
symptoms which can have transient periods of increased
severity, as well as dealing with emotional issues relating to
social stigma and embarrassment surrounding their
condition [20]. A number of these socially evident factors,
for example drooling, slurred speech, balance issues, and
gait freezing, have the potential to be improved by well-
designed technologies which could aid in the discreet and
personalized provision of cues and strategies to help
overcome these symptoms [e.g. 16, 19, 20, 21]. However,
managing the double heterogeneity of both the condition
and the individual gives rise to a variety of complexities in
terms of how to design for and with such communities. In
order to address this gap in the literature, we reflect on the
processes we went through when designing rehabilitative
exergames (digital exercise based games) with PwP and a
group of clinical staff interested in the potential of using
exergames to help manage issues with physical function.
In this paper we describe two studies. Our first involved
working closely alongside clinical staff and a small group
of participants to design and develop a proof-of-concept
game for clinical feasibility and safety testing of the
Microsoft Kinect platform for rehabilitation and exercise
within Parkinson’s. Our second took a more participant
focused approach and worked alongside PwP, through a
user-centred design process, to explore the wider design
considerations for such games. We specifically define these
games as rehabilitative because, although exercise based in
nature, they have a particular therapeutic target. We reflect
upon both processes, one which followed a designing ‘for’
approach and the other designing ‘with’ and provide an
overall set of consideration for future designers wishing to
work with varied groups of stakeholders in the future.
As previously mentioned, from a health perspective, the
condition of Parkinson’s is complex and multi-faceted, thus
the process of designing with and for this user group is
particularly challenging, particularly when considering the
vast differences in physical ability within PwP on a day by
day, or even in some cases hourly, basis due to motor
fluctuations. As one of few examples of design focused
work with PwP we aim to explicate the design space in
three ways; 1) we provide an overview of the symptoms
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http://dx.doi.org/10.1145/2702123.2702292
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and experiences associated with living with Parkinson’s for
those seeking to enter the design space, 2) we discuss
insights for design considerations that can sensitize
designers to the specific needs and values of this user
group, relative to exergames, and finally, 3) we provide
recommendations on how to design with and for PwP.
LIVING WITH PARKINSON’S
Parkinson’s is a progressive neurodegenerative disease,
caused by a depletion of the neurotransmitter dopamine in
the brain, which affects approximately 1 million people in
the USA and 5 million worldwide [22], not to mention
undiagnosed statistics from developing countries. It is
estimated that approximately 60,000 Americans are
diagnosed with Parkinson’s each year [23]. The condition is
generally associated with the ageing population, with most
diagnoses occurring in those over 50, however, with an
increased understanding around Parkinson’s, thanks to
clinical research and public awareness, more younger adults
are being diagnosed with the condition - 1 in 20 new
diagnoses are under 40 in the UK [25] and an estimated 4%
are under 50 in the USA [23]. Parkinson’s manifests itself
in movement, or motor, symptoms including rigidity
(stiffness), tremor (involuntary, rhythmic back and forth
movement often of the hands) and bradykinesia (slowness)
[6]. PwP also have difficulties with movement initiation (or
hypokinesis). These symptoms have associated effects on
balance; gait— wherein “freezing” episodes can occur (a
feeling that the feet are stuck to the ground); arm
movements and facial movements, which can cause a mask-
like facial expression. Speech and voice are also typically
affected making communication difficult. A range of non-
motor symptoms are also common including: fatigue,
compulsive behaviors such as excessive spending or
gambling, inhibition and a range of autonomic dysfunctions
(e.g. impoverished temperature control; incontinence) [28].
Cognitive decline (e.g. slowing; difficulties with dual task
performance) is also a common feature of Parkinson’s.
Longitudinal studies have found 78% eventually develop
dementia [1] after experiencing motor symptoms for an
average of 10 years [14]. Although the presence of anxiety
and depression, alongside significant negative changes in
emotional wellbeing, are identified to be highly prevalent in
PwP, findings have shown that these symptoms are not
systematically recognized in clinical practice [28].
EXERCISE AND REHABILITATION IN PARKINSON’S
Following the description of the myriad of symptoms which
can be experienced by PwP, it is clear to see how traditional
exercise methods might pose a problem. Parkinson’s is
generally well controlled by a medley of medications (ON
times), however, with extended use of Levadopa (dopamine
replacement), patients may begin to feel the effects of the
medication ‘wearing off’ causing periods of severe
symptoms (OFF times) [24]. In some cases patients can
experience dramatic and unpredictable fluctuations between
ON and OFF times, which can be a barrier for patients
undergoing rehabilitative exercise programs. This
highlights the need for a self-directed, opportunistic way of
delivering exercise. Not all PwP will have the same
symptoms, in fact, the scope and variability of symptoms
and how they impact on function among individuals is vast,
further stressing the importance of a malleable
rehabilitative exercise delivery method. Technology could
prove invaluable in helping to monitor and change the pace
or difficulty of the exercise being delivered at home
through automatic sensing, a task usually conducted by a
therapist during supervised exercise.
Traditional physical therapy takes place under supervision
of a trained therapist either in a clinical setting or in the
patient’s home. In the UK, sessions last approximately 30-
60 minutes and are often delivered in blocks of sessions
over the course of 6-8 weeks. The premise of these therapy
sessions is to provide the patient with a set of strategies and
rehabilitative exercises, to help retrain functional abilities
relating to movements which are diminished due to
Parkinson’s. However, sessions are expensive, time
consuming and must be practiced regularly to maintain any
gains made. For exercises to be truly beneficial to the PwP
they must learn to integrate them into their everyday
movements, without the support of the clinician.
Consequently, independent home practice is an important
aspect of treatment. In addition, repeated and long-term
training of rehabilitative exercises (i.e. high intensity of
therapy) has been proven to promote neuroplasticity,
reducing neurodegeneration and remapping damaged motor
pathways in the brain [9]. Motivation of the patient post-
therapy, to carry out home based practice of exercises, is a
key barrier to generalization of therapy into everyday life.
Patients are heavily supported by their therapist during the
program and once it is over motivation can wane. In many
cases treatment effect does not persist 6 months following
discharge from a physical therapy program [12]. Having a
method of providing home-based feedback and
encouragement, through digital technology, could serve to
better support home practice and keep motivation intact.
EXERGAMES AND THEIR ROLE IN REHABILITATION
Recent years have seen a rise in literature focusing on
exercise based gaming in clinical rehabilitation. In
particular several studies have focused on exergames
targeting stroke rehabilitation [2, 4, 8, 15, 26]. Whilst [15]
found that games such as Wii Sport can maintain and
improve the physical health of stroke patients, more work
was required in order to optimize the hardware and
software, to ensure that a wider range of patients could
engage with exergaming. [26] concluded that most clinical
research reporting positive benefits, while valid, was
conducted in supervised clinical settings over short time
periods. They highlight the further importance of evaluating
the user’s experience of the games being played so that the
needs of participants can be modified and adapted. [2]
highlight that, without clinical supervision, patients are
susceptible to carrying out compensatory movements,
which can potentially impede progress or create new health
3
problems. To overcome this, the researchers designed a
motion-based video game to detect compensatory
movements and teach the user how to carry out movements
properly. Particularly interesting is their use of operant
conditioning to shape game player behaviors, whereby
correct and incorrect movements correspond to meaningful
in-game indicators of success. They found this technique
shaped the users’ movements without decreasing the
players’ willingness to play games. [8] identified the
importance of meaningful play within rehabilitative
exergames and identified how vital it is to challenge users
within gameplay to ensure motivation is maintained. They
highlight the benefit of using dynamic adjustment to alter
difficulty within rehabilitative exergames for stroke to
ensure that the needs of the individual can be effectively
met. This is particularly relevant in the case of PwP due to
the inevitable decline that occurs over time as a
consequence of the progressive condition, as well as the
variability of ability they can experience during ON/OFF
fluctuations. Finally, [4] illustrated the importance of
viewing each patient as an individual, each experiencing
different social, emotional and practical factors within their
home lives which might impact upon motivation to practice
rehabilitative tasks at home. They also highlight how
motivation wavers when faced with carrying out
rehabilitation exercises alone in the home in comparison to
clinical settings, wherein the patient is heavily supported by
the therapist. This emphasizes the importance of using
participatory methods to understand the user engaged in the
design process. Whilst both stroke and Parkinson’s share
attributes in relation to physical mobility difficulties (e.g.
upper limb dexterity, walking) there are clear differences
between the two. Stroke is caused by a cerebrovascular
incident (CVI) which causes damage to the brain which can
short lived or long lasting. Rehabilitation aims to regain
functional ability of paralyzed limbs to decelerate motoric
decline (i.e. through underuse). In contrast, Parkinson’s is a
progressive degenerative condition, thus the severity picture
is expected to increase. Therapeutic input therefore, whilst
aiming to support increased functional ability, must account
for an invariable decline as the condition progresses.
METHODS FOR DESIGN IN PARKINSON’S
Overall, the general bank of HCI literature specifically
related to Parkinson’s is relatively limited [e.g. 3, 5, 19, 20,
21, 33], and research related to designing for and with
Parkinson’s remains even more so underexplored. Both
McNaney [20] and Barros [5] took a design approach
modelled on [27], which focused on developing design
recommendations through a set of workshops with PwP and
their caregivers, using discussion around low and high
fidelity prototypes to refine design ideas. Both authors took
an iterative development approach to refine their design of
a wrist worn cueing device to treat drooling problems [20]
and a mobile based application for the day to day self-
management of Parkinson’s [5] respectively. Unfortunately,
the authors do not reflect on the successes and challenges of
their design experiences, highlighting the need for an
appraisal of design methods for Parkinson’s and the
construction of a set of recommendations for future
designers aiming to explore the design space, particularly in
relation to managing contingencies which might arise
within the design process around specific Parkinson’s
symptoms (e.g. speech, mobility). Specific to PwP, the
design of rehabilitative exergames remains relatively
underexplored [3, 33]. Assad et al [3] designed WuppDi!, a
suite of games designed alongside PwP and a group of
physical therapists, which targeted the self-directed practice
of exercises to compliment physiotherapy. After
researching and testing commercial games with PwP, to
identify the advantages and challenges of existing game
mechanics and input devices, they found that available
games were too demanding for the target group.
Throughout their design process the authors highlighted the
importance of designing an exergame which was; simple to
use, based on familiar themes, employed rhythmic music to
motivate users to move and to provide auditory cues,
provided feedback to support usersperceptions of their
progress and provided variety to account for individual
needs. Whilst these requirements offer a clear starting point
for the design of exergames for PwP they focus more upon
the game mechanics. Thus, there is still a gap in the
literature relating to our understanding of how we might
support the integration of such games into everyday life,
known to be a challenge in other health related areas [4,
12], and how we might engage PwP to explore this concept.
OUR DESIGN PROCESS
The research presented in this paper encompasses two
design case studies, both based around exergaming and
Parkinson’s. The work in case study 1, designing ‘forPwP,
necessitated the development of a proof-of-concept game,
with 20 minutes of gameplay, which would enable a group
of clinicians to evaluate the feasibility, safety and ability of
the Microsoft Kinect to detect, measure and respond to the
movements of PwP appropriately. With the exception of a
short scoping workshop with three PwP prior to developing
the proof-of-concept game, the game was the result of a
collaborative relationship between the design team and four
highly experienced clinicians within the area of movement
disorders. The use of our proof-of-concept game in a lab-
based study enabled our clinical collaborators to confirm
Microsoft Kinect could provide a feasible and safe platform
for supporting PwP to exercise in the home [10]. In our
second case study, designing ‘with PwP, we underwent a
longer user-centred design process with PwP to understand
how rehabilitative exergames could be designed to reflect
the values, goals and lifestyles of our participants as well as
motivate use within the home over the long term. Here, we
describe these studies in detail and draw lessons learnt
across the two. Within our discussion section we reflect
upon the complexities of engaging PwP and relevant
stakeholder in the design process and present a set of
insights for future designers entering into the domain.
4
Case Study 1: Designing SCRUMP ‘for’ PwP
This study was conducted in 3 stages. We first held
meetings with our clinical stakeholders to establish their
requirements for the game. We then ran a short workshop
with 2 PwP and 1 carer to explore how we might translate
these requirements into an exergame for this user group.
Drawing on insights from these initial stages we developed
SCRUMP, a game to promote home practices of exercises
for upper and lower limb movement. A small study to
assess the game’s feasibility, safety and accuracy in
detecting and measuring movement in PwP was conducted
and can be viewed in [10], however, for the purposes of this
paper we focus on the design phases.
Establishing Game Requirements
We were approached by our clinical collaborators to
develop a ‘proof-of-concept’ prototype, to explore the
feasibility and safety of a Microsoft Kinect based game to
support the practice of upper and lower limb rehabilitation
exercises for PwP. Our clinical team consisted of four
movement disorders professionals within a clinical ageing
research unit. They saw great potential in the Kinect as a
home-based platform for; a) supporting and encouraging
exercise due to its ability to monitor and provide feedback
on movements as they are being carried out, b) providing a
safe exergaming environment due to its ability to be
controlled via the body, without the need for additional
hardware which could potentially pose a risk for tripping
and c) offering the means for a clinician to remotely
monitor patient progress and tweak exercise programs in
response to the progression of an individual’s symptoms.
Over five face-to-face meetings we brought both the design
and clinical teams together to discuss intended
specifications for our exergame. Each meeting engaged
collaborators in structured discussion around; the types of
exercises to target, the complexity required and how we
might safely progress users of the game through gaming
levels. As a result of these meetings the clinicians specified
7 physiotherapy requirements for our exergame: a)
challenge balance and coordination by incorporating multi-
directional stepping and reaching into the exergame, b)
encourage players to take big steps and reach wide in order
to support the rehabilitation of hypokinetic (smaller)
movements, c) include some element of dual tasking, i.e.
completing an exercise whilst completing a cognitive task
at the same time, to mirror the everyday challenges of
living with Parkinson’s, d) not become so challenging that
participants become at risk of falls, e) incorporate 20
repetitions of each activity, with more upwards and
sideways reaching movements to avoid the exaggeration of
slouching, randomization of activity presentation and
similar repetitions of right and left movements to ensure a
sufficient level of rehabilitation goals, f) begin with a
shallow difficulty progression in the early stages followed
by a steeper curve of progression to respond to the variance
in player’s ability levels and ensure all players felt a sense
of achievement and g) become progressively more
challenging through safe means by increasing the difficulty
of stepping and reaching tasks and by performing stepping
and reaching tasks concurrently.
A Scoping Workshop with PwP
Following the construction of these requirements we
conducted a three-hour scoping workshop to gain early
insights into how to translate clinicians’ requirements into a
game PwP would enjoy playing. We aimed to understand
something of the gaming experiences and preferences of
PwP, as well as any issues such a participant group might
experience using the Kinect gaming system.
Participants were recruited through local Parkinson’s UK
support groups and were excluded if they had compromised
mobility (i.e. unable to walk or stand unaided). We also
invited carers to join the study, to add insight into the ways
we might promote longer term use of the game within the
home by supporting collaborative playing experiences with
loved ones. We aimed to recruit 6 participants, however last
minute drop-outs meant the scoping workshop consisted of
3 participants, 2 PwP and 1 carer. The workshop lasted for
3 hours and took place on Newcastle University campus.
Initial discussions established how Parkinson’s affected
their daily lives in terms of mobility and general movement
constraints, leading into discussion surrounding their
general level of exercise and gameplay, what they do and
who they do it with. Similar to [3], participants then had
opportunity to trial the Nintendo Wii and Xbox Kinect
using on the market exercise based games (e.g. Wii fit,
Fitness Evolved, Just Dance). Further open discussions
based on their gameplay experiences explored any usability
issues for PwP, whether they envisioned playing the games
at home, specific features that they liked or disliked in
regards to graphics, game presentation, use of avatars etc.
and any ideas they would like to see brought to life in a new
game specifically for Parkinson’s. Throughout the session,
a researcher was collating all the ideas and design
considerations being discussed by the participants. The final
activity involved viewing all these ideas together and
drawing up a set of final requirements that the participants
would like to have in a future rehabilitative exergame.
Participants expressed enthusiasm for a Microsoft Kinect
game specifically for PwP and especially one which aimed
at improving function. Participants stressed the game would
need to be enjoyable for them to remain motivated. Several
design requirements were identified as a result of this
workshop; a) participants considered strongly that the game
should adapt its complexity to suit individuals at all stages
of the condition- echoing our clinical collaborators, b)
game content and graphics should focus on outdoor
activities, especially those that were at times increasingly
inaccessible to PwP as a result of their symptoms (‘fantasy
real life’), such as gardening, skiing and snowball fights, c)
the game should use a cartoon avatar to represent their body
movements to avoid a sense of feeling “silly” while playing
the game and d) the game should include sound effects and
rewards to motivate play and create a fun experience.
5
Developing SCRUMP
In response to requirements drawn from our first two
phases we developed SCRUMP (figure 1) using Microsoft
research’s Kinect for Windows SDK. SCRUMP is a fruit
picking game where the player is a farmer riding a tractor to
harvest fruit. In order to encourage the player to make large
stepping movements they must keep a foot on the central
‘Go’ button to power the tractor, while making amplified
stepping to the right, left, forwards (to move the tractor up)
and backwards (move it down) to steer the tractor on its
path. Early levels focused only on reaching on one side,
with the introduction of dual processing tasks, such as
determining which type of fruit to pick with a specified
hand, and using stepping sequences to drive the tractor past
oncoming obstacles (sheep, high wire, bird, wasp), in later
levels. The speed of the game could be manually adjusted,
or set to automatically speed up or slow down dependent on
an algorithm detecting the ongoing success of the player.
Several sound effects were used to indicate successful
(coins falling) and unsuccessful (squashing fruit) collection
of fruit and obstacle avoidance (animal noise). In addition,
a crowd could be heard cheering at the end of each
successfully completed level and the player could visually
observe the amount of fruit they had collected in a
receptacle on either side of the screen.
Our study met the brief outlined by our clinical
collaborators and enabled us to design an exergame which
could be used safely by PwP (n=10) in supervised settings
[10]. However, Galna’s study [10] showed that half of the
participants felt they would not be motivated to play
SCRUMP if it was available to use at home. In order to
probe the participants perceived value of the game, they
were asked whether they would purchase the game if it was
available. Only 1 participant definitively said that they
would, with concerns over the cost of the game (3) and its
fidelity (2) being expressed by others. The complication
with focusing on clinical contributions for design is that
much of our focus was around the target movements, and
incorporating these into the game, and less around what
motivates users to play the game in the first place. Whilst
this is an extremely important element there are intricacies
relating to the needs and desires of the target population,
which cannot be anticipated by clinical professionals, and
must be considered if we are to support and motivate longer
term use of these games. In response to the knowledge gap
arising from this first study we decided to undergo an in
depth user-centred designing ‘with’ approach, to unpick the
complexities of exergame requirements for Parkinson’s
arising from the participants themselves, without the
constraints of time or clinical functionality. An ‘invisible
design’ [7] methodology was used to probe participants’
perceptions of exergaming and how it might fit into their
lives.
Case Study 2: Understanding Exergaming ‘with’ PwP
We based our design work on the Open Architecture for
Accessible Services Integration and Standardization
(OASIS) approach [17], which employs the use of
“invisible design” [7] through a video prompt, a method
which inspires novel ideas around how a technology might
look or function through ambiguous reference to a version
of the technology which is never actually seen. The OASIS
method involves two sessions with participants an
exploratory meeting featuring a video prompt to explore the
design domain and allow participants to start articulating
their own requirements and obligations, followed by low-
fidelity prototyping sessions to start developing a
technology based on participantsidentified requirements
and obligations, with a focus on aesthetic issues. OASIS
was designed for use with older adults (65+) suggesting it
might be an appropriate approach to take with PwP, many
of whom are within this older age range. In addition, this
approach places importance on “establishing an appropriate
atmosphere in the meetings, to facilitate younger designers’
novel insights into older people’s day to day lives” [17,
p.1201]. Being that we wanted to gain an empathic
understanding of the lived experiences of PwP, we felt that
this approach would facilitate this effectively.
Participants were recruited through local Parkinson’s UK
support groups. Participants of any age or disease stage
were invited to join but were excluded if they had
compromised mobility to the extent that they were unable
to walk or stand unaided. 8 participants were recruited (6
male and 2 female) aging from 46 to 78 years old, and
ranging from 1-4 on the Hoehn and Yahr scale [13]
(H&Y)a widely used scale for describing Parkinson’s,
rated by a clinical research team member, ranging from 0
(no signs) to 5 (needing wheelchair or bedridden)to
Figure 1. SCRUMP being played.
Table 1: Participant details
Participant
3
5
6
8
Age
62
52
69
65
Gender
M
M
M
F
H&Y
2
2
2
2
6
assess the severity of their overall condition (see Table 1).
Each stage of the process was video and audio recorded and
underwent inductive thematic analysis to draw out themes
for discussion on resultant design requirements prior to the
next session. There were 2 sessions, each lasting
approximately 3 hours, conducted at Newcastle University.
Session 1: Exploratory Meeting
This first session was aimed at enabling participants to get
to know one another and share personal experiences. This
also gave the researchers involved a chance to gain an
empathic understanding of the participants’ lived
experiences, triumphs and difficulties surrounding their
Parkinson’s and their exercise and rehabilitation practices.
Following this structured initial discussion, participants
watched our “invisible design” video. The film created was
set in the living room of a couple “Gill” and “Chris”. The
opening scene showed Gill finishing a phone call with a
friend known as Alice. Chris was curious as to what she
was talking about, which led Gill and Chris to discuss the
“thing” (a digital gaming system which can be used to play
games to support home practice of rehabilitative exercise)
which Alice had at home, and which Gill was arranging to
trial next week. The dialogue was written specifically to
cover likely barriers and motivations towards exercise
derived from [30]. The characters, Gill and Chris,
highlighted contrasting opinions to facilitate the elicitation
of positive and negative responses to the idea. The next
scene, one week later, when “it” had arrived, showed Gill
trying it out in their home and Chris observing. At times the
film was entertaining and humorous to try to create
qualities which live in the memory and promote subsequent
discussion. Actors in the film did not have Parkinson’s, so
as to avoid making participants feel labeled with the disease
or become fixated by differences between themselves and
the characters. Following the film viewing, we facilitated a
second discussion based around the characters in the film
and their reactions to the “thing”. We encouraged
participants to think about why the characters had different
attitudes toward the “thing” and how their use of the
“thing” could be sustained over time.
Analysis of the data identified potential features,
requirements for a design and potential problems with
design concepts. Based on this analysis we developed
several design considerations which we wanted to explore
in the following workshop: methods of alerting others of
your presence when playing the game (i.e. in order to
engage with an online community to aid motivation),
ensuring affordances can be made for the PwP during
multi-player options to support playing with family
members, exploring ways in which data should be captured
and shared, the use of in-game notifications and feedback,
and finally, how the player should be represented within the
game and in what digital environment.
Session 2: Critical Evaluation of Low-Fidelity Prototypes
The OASIS method specifies that the following session
should focus on the critical discussion of co-created, low-
fidelity prototypes that respond to design concepts arising
out of the previous workshop. In response to the reduced
motor control abilities of some of our participants, which
we felt would cause issues with craft based prototyping and
may cause undue embarrassment in a group setting, we
chose to create our prototypes digitally and use them to
instead incite the critical discussion required. We developed
a set of adaptation prototypes that showed how
commercially available games could be adapted in relation
to the themes identified in the previous workshop. This
entailed demoing commercially available games to our
participants through a series of promotional YouTube
videos. The demoed games were carefully selected to
reflect elements deemed important by our participants in the
previous session (e.g. multi-player options, in-game
notifications, avatar vs ‘real’ players). We then showed our
participants an adaption layer, following each video, which
was a screenshot from the game which had been adapted in
different ways to support the gameplay of someone with
Parkinson’s, in accordance with the themes from the
previous session (e.g. the provision of different kinds of
feedback on progresswritten, pictorial, audio, making
affordances for PwP during multi-player optionshidden,
notified, reaching a target). We structured conversations
around each prototype to better understand the requirements
identified by the participants and resolve areas of conflict.
Again, analysis of the data refined our understanding of the
design requirements for rehabilitative exergames for PwP.
At the end of this session we also gave participants an
informal opportunity to play SCRUMP, along with
several other commercially available exergames.
Participants were not asked to evaluate SCRUMP in any
way, instead, we used this gameplay experience to allow
participants to view a concrete example of an exergame
designed specifically for PwP and compare it to other
games on the current market. As expected participants had
difficulty with the motor skills necessary to play
commercial games however, feedback for SCRUMP was
very positive. All participants were keen to play the game
and were able to play after a small demo and
encouragement along the way due to its intuitive nature and
concise instruction provided. SCRUMP did actually
achieve some of the design principles established in the
design sessions with this group of participants, namely its
real-life fantasy theme and its dynamic adjustment making
the game forgiving towards the fluctuations in Parkinson’s.
A full discussion of the requirements for Parkinson’s that
we drew from the study are described in detail below.
Exergame Requirements for Parkinson’s
Below, we discuss the findings from our workshop series
and reflect upon their translation to the findings we
gathered in our first case study. We suggest a set of
exergame considerations, specific to PwP, for future
designers wishing to enter into the design space.
7
Through our workshop series we were able to gain deep
understanding of the physical and emotional difficulties that
can arise through living with Parkinson’s and the social
embarrassment and loss of self-confidence it can provoke:
PM1: “I am very self-conscious about almost anything I do
outside of the house, even putting my coat on. I struggle to get
my coat on and find that people are coming and helping me
dress, which is bloody embarrassing in public. I mean, I want
to be Jack the lad not the stiffy in the corner”. Building self-
confidence through having a method of exercising in the
privacy and comfort of the home was therefore an
important factor for the participants: PF7:“My symptoms
aren’t visible when my drugs are working but when they’re
not…social embarrassment is a massive part of Parkinson’s, it
erodes your self-confidence in a big, big way. So if you’ve got
a gadget you can use at home you can exercise and you don’t
have to worry about anybody seeing you.” These comments
echo the sentiments of PwP in [20], wherein discussion
around the use of medical technologies (e.g. a falls alarm)
and feelings of disability associated with them prevented
their everyday use, even when alone. They also translate to
the design recommendation outlined in case study 1 around
using avatars to avoid feeling ‘silly’ during gameplay.
Grounded in Real World Activities
Participants expressed a sense of loss and PM2:
“frustration” around activities they were no longer able to
partake in due to their Parkinson’s (e.g. golf, cycling,
karate, swimming and cricket). One participant reported he
PM6: “wasn’t able to keep up with the others” in a line
dancing class he used to attend, another reminisced about
playing cricket with his grandson; PM3: “I used to play
cricket with my grandson, but I can’t throw a ball anymore”.
Our participants felt strongly that having an exergame
which is grounded in real world activities would help them
to re-connect with activities they can no longer do due to
their Parkinson’s. This recommendation also reflected the
notion of ‘real-life fantasy’ that was drawn from our case
study 1 workshop, wherein participants also wanted the
game to represent real-life activities they were unable to do.
Establish and Maintain Community Motivation
Participants talked at length about their experiences around
exercising within their Parkinson’s UK group. Activities
such as badminton, table tennis and dancing were among
some of the exercises that they reported carrying out within
their weekly group, in which PwP and family members
come together to exercise within a supportive and
understanding environment: PM4: “It allows you to build up
your self-confidence and the by- product of exercise is that you
actually feel good…you find it’s something you tend to forget
with Parkinson’s, just how good you feel after you’ve done
some exercise”. Somewhat different to our cliniciansideas
for developing a single player game, the social element of
the Parkinson’s UK group was seen as a motivator for
enabling individuals to exercise. This was carried over into
discussions regarding what they would like within a
rehabilitative exergame. Establishing an online community
exclusive to PwP appealed to the participants as a way to
expand existing social circles and reach out to others who
might need help. PM1 said “different people handle the
diagnosis in different ways. Some retreat, others go for it. For
those who retreat, that would be a first stepping stone for them
to start going out and trying to have a life again”. Participants
commented on how difficult it often was to find the time to
carry out rehabilitative exercises at home and how this can
be a barrier to remaining motivated: PM2: “it’s easy to fall
out of the habit of doing things at home and the discipline of
actually doing it. Like you’re supposed to do the Conductive
Education [a structured physical rehabilitation program] at
home, the voice therapy treatment which you’re supposed to do
at home, and then you’ve got your exercises every day and
then your daily routine. I mean, I’m retired now and I don’t
think I’ve ever been so busy in all my life”
Their sentiments were reminiscent of [4] in that ‘finding a
balance between work, duty and fun’ was important to
them. They felt having an online community organized and
run much like their regular meetings would be beneficial in
terms of supporting and motivating one another.
Participants were split in their views about whether or not
there should be a competitive element to the game. They
agreed the best concept for the game would be to support
players in practicing and working with others towards a
common goal, with the option of challenge available once
they felt that they had consolidated their skills.
Don’t Track Me!
Aside from the well-being and social element of exercise
that they gain from their Parkinson’s support group being a
motivation to exercise, the participants emphasized the
physiological importance of practicing exercise regularly to
help manage symptoms such as stiffness and pain, however,
they made reference to Wii use and feeling PM2:
demoralized when returning to it after a time and PM2:
“finding that I’ve deteriorated, which is a disincentive to do it
again”. An important point to draw from this was that
participants PF7: “don’t want to track your decline, you want
to stay positive!” As a result participants wanted feedback
provided by the game in terms of their achievement and
progress to be forgiving of the degenerative nature of their
disease. Contrasting with notions of the ‘quantified self’
and highly successful off-the-shelf products for
encouraging exercise such as FitBit and Nike Plus, our
participants didn’t want quantitative data about their
performance, and particularly data that they could reflect on
over time. Instead, their preference was for feedback which
was more abstracted, while still enabling them to still feel a
sense of progress and achievement. PM4: “as you progress
through you actually put together a jigsaw. You can track your
progress, your actual levels of achievement”.
Show Forgiveness of Parkinson’s Symptoms
Participants articulated keenness to involve other family
members in their gameplay which was impossible with
current games, PM1:My son […] he’s too fast like most of
them are. There’s no point in me playing him…. Unless it was
8
designed in a way that it could be done slowly. Showing
forgiveness within games also relates to the ability of
gaming systems to create a level playing field within the
game mechanics, PM1: with the handicap system […] it
allows more of a level playing field […] if your skilled at the
game but do have Parkinson’s because of the symptoms you
just can’t reach that level. At least with the handicap system
you’re on a level playing field.
Making such measures of forgiveness visible to all players
was not considered inadvisable, but instead offered
opportunities to talk with family members, particularly
children about the condition; PF2: I think it would actually
help you explain say to a younger member of your family, how
to explain to them that sometimes you find it more difficult.
Finally, participants described frustrations with existing
gaming systems where elements of their condition were
inappropriately highlighted. PF7: “When you do the body
test on the Wii and it very nicely tells you that your left leg is
shaking. The number of times I’ve spoken to it and said ‘yeah!
I’ve got Parkinson’s!’ It would be nice if it was something
constructive rather than pointing out the obvious They
wanted a system which would not only understand their
symptoms (and, as such, not draw attention to them), but
one that would also adapt accordingly to compensate for
their symptoms as they vary. PF7: “If your balance isn’t as
good or you’re tremoring or have restricted movement due to
the stiffness, if it could take that into account that would be
better”. Ensuring future games employ dynamic
adjustment, as suggested by [8], would enable the needs of
a wide range of participants to be met whilst also
accounting for fluctuating ability during transient ON/OFF
periods. This is, in addition, reflective of the requirement
drawn out in case study 1 around adapting complexity to
suit individuals at all stages of the condition.
Maintaining Privacy across Agencies
Participants raised some interesting concerns over privacy
of data which could potentially be collected by the game
and who their information might be shared with. The
process of dynamic game play requires the game to store
and respond to an individuals performance in the short
term. The notion of data being stored and shared was
worrying for participants. PF7 said: “Your identity would
need to be protected because there would be concerns about
that information becoming available to the benefits agencies
and PM3 noted: “You would have to be tight on that, honest
because otherwise you may well end up people actually not
taking the game up. Because you’ll actually get suspicious with
information going missing. These comments were
unexpected by the research team. In part, the sensitivity
displayed by our participants relates to the variance in
symptoms within ON/OFF periods and how this then
impacts on other’s understanding and acceptance of their
disability. Several of our participants felt that others (i.e. the
public) did not believe that they had a debilitating
condition, since their symptoms were not consistently
observable. As such, they worried they might be identified
instead as shirkersor benefit frauds. In addition, because
of this variance in symptoms, there was significant concern
that they might be assessed on their gameplay during ON
periods. Some of our participants, who were below
retirement age, discussed a fear that governmental agencies
might consider them well enough to return to work,
especially during periods of economic decline, whilst others
feared that they might have their supported physical therapy
removed if they were seen to be progressing with the game.
DISCUSSION
Our paper highlights the complexities of designing with and
for PwP, through a presentation of the symptoms and
experiences associated with living with the condition. We
have provided insights for design considerations that can
sensitize designers to the very specific needs and values of
this user group, in relation to the development of
exergames. Aside from this, we explored the ways different
stakeholders present the needs and desires of PwP within
the design process. Although our findings are well
motivated by the data, we recognise a limitation to our
work is that we did not go on to develop and test an
exergame featuring the considerations outlined in the
second case study. As such, we cannot present findings
which reflect whether our participants would have truly
been motivated to maintain extended use of a rehabilitative
exergame with their everyday lives. Further work is needed
to address this issue which expands the scope of this paper.
Here we reflect upon the successes and challenges of
designing exergames ‘for’ and ‘with’ PwP, addressing are
gaps in the literature around understanding and managing
the complexities of Parkinson’s within the design process.
We build upon Assad’s [3] work addressing the necessities
of game mechanics for exergames for PwP by highlighting
the importance of engaging PwP in design, to ensure digital
technologies support or improve aspects of the condition.
As well as being developed in ways which avoid stigma, by
responding to the community’s life experiences, needs and
values. The use of appropriate user-centered design
methods is, in this sense, vital as it allows us, as designers,
to co-design technologies with participants that solve
important problems to them in ways which are appropriate.
Valuing, but Balancing Expertise
The input of clinical staff is vital in the practicalities of
developing rehabilitative exergames, as they provide
instruction and expertise on the specific rehabilitation
exercises to be targeted. However, without the perspectives
of the patients who will be playing the game, we are likely
to miss crucial requirements (e.g. the desire not to track
progress or the complexities of data sharing) which will be
the core drivers of supporting motivation to actually use the
game within a long term home environment. With our first
case study, detailing the SCRUMP design process, we were
working within an extremely sensitive time scale, thus we
had limited time to recruit and carry out workshops with
PwP to gain their insights. The game that was eventually
trialed in [10] attempted to evaluate the user’s experience
and address the needs of participants [26]. However, the
9
focus of this study remained within the scope of assuring
the game was a safe and feasible way to deliver clinical
exercises, and less around understanding the intrinsic values
of the participants which that might support longer term
use of SCRUMP within the home environment.
In our second case study, we wanted to gather free flowing,
experience rich, qualitative accounts from PwP to fully
understand how they felt exergames targeting movement
rehabilitation should be designed and why. Through this
process we were able to come up with a set of design
considerations for designing such games ‘with’ PwP. These
considerations, whilst matching with the first process
relatively well on surface requirements such as having ways
to feedback on progress and having a ‘real-life fantasy’
playing environment, differed significantly in terms of the
depth of information we were able to collect surrounding
aspects such as the importance of maintaining privacy and
methods of remaining motivated through the Parkinson’s
community. This highlights the importance of carrying out
participatory design methods, as well as involving the
clinicians, when developing technology for clinical benefit.
One area of interest which brings to light the differing
priorities of clinicians and patients was the element of data
sharing. Initial visions conveyed by our collaborators, was
of a game they could tailor at distance to better suit
rehabilitative needs of a patient over time. However this
was in actuality an issue for our participants, who were
fearful of certain types of information being shared. What
we have found is that, clinicians, despite being grounded in
expertise, still mainly work within a medical model of care
[32] with their interests centering around providing an
efficacious treatment. Whilst extremely important,
this often leaves gaps in the design of rehabilitative systems
which fail to take into account external factors, outside of
the clinical scope, which might impact a patient’s desire to
engage with the technology. We report novel findings in
regards to alleviating a sense of loss by designing systems
grounded in real world activities, the sense
of demoralisation felt by being tracked within a declining
condition, the importance of dynamic adjustment to
promote a sense of forgiveness of Parkinson’s symptoms
during fluctuations and creating assurances of data privacy.
Our findings show several value dilemmas between the
clinicians and PwP we worked with. In order to truly ensure
that both clinical and socio-emotional needs are being met
we, as designers, must find a way to foster multidisciplinary
design processes with both patients and clinicians. A
seemingly simple solution to this would be to include the
clinicians within the design workshops with the patients, to
orientate stakeholders to the perspectives, values and
ideas of one another. However, one complication that must
be considered is that expertise can often influence power
dynamics between stakeholders, thus our discussion with
PwP may not have been as open and free-flowing had we
included the clinicians within the sessions. On reflection of
the conflicting values within the design process that we
found, future work of this kind would benefit from an
additional requirement validation session including all
stakeholders, wherein the design team can engage all
participants in discussion points arising from both sides
and facilitate the development of design solutions which
meet everyone’s values and needs.
Conducting Design with People with Parkinson’s
As described in the ‘Living with Parkinson’s’ section PwP
can experience a multiplicity of complex symptoms. This
can make the undertaking of design activities with this user
group particularly difficult. Throughout our research
processes we were able to draw out several experience-
centered reflections around the practicalities of designing
with PwP. There are a myriad of intricate sensitivities that
should be taken into account when planning and
undertaking the process which has not yet been reported
within the literature. [17] outlines clear guidelines for
conducting participatory design with older users, which we
used as a framework for our own work. However, it became
clear through our work that several Parkinson’s specific
issues were inadequately addressed by this method.
Speech: Speech problems are extremely common in PwP
(around 90%) and can thus be a barrier to both the
involvement of participants and the quality of data that can
be collected. On reflection, our group size of 8 may have
been too large to facilitate the participation of all members.
Smaller groups could prove beneficial for future designers.
This echoes a finding of [18] who advocated the use of
smaller groups when working with older adults in design to
overcome deficits and enhance participation.
General Mobility and Dexterity: Specific motor symptoms,
such as freezing of gait, can make tasks such as going to the
bathroom, entering a lift independently or getting in and out
of a chair difficult. Being mindful of this and ensuring a
team member is available to facilitate walking, as well as
ensuring the workshop venue is set up using chairs with
arms can mitigate these issues. Craft based resources might
also pose a problem for participants due to decreased fine
motor ability and tremor so alternative resources may need
to be considered, as shown in modification of the
prototyping activity in case Study 2.
Medication: Medication timing is key for PwP, particularly
those who suffer from ON/OFF fluctuations. Clear
schedules for each session should be strictly adhered to, to
ensure participants know when to expect breaks. If running
multiple workshops, there should be an awareness that
participants might be better on one day than another.
Timing workshops so that they are each held around the
same time might help to combat this, although not all
participants have predictable ON/OFF times.
Age Differences: We observed age disparities amongst our
participants with the younger ones being more experienced
in their use of technology and their readiness to adopt new
technologies. While we felt that we gained useful design
10
insights from our participants, it is possible that the ideas
stemming from our invisible design activity were steered by
the younger participants who were better able to associate
the gaming system with current on the market systems.
CONCLUSIONS
Our process of designing SCRUMP ‘for’ PwP, focused
mainly on the clinical requirements of the game and had
minimal input from PwP. However, we produced it within a
short time frame, with many of the surface requirements
identified in our in-depth design process ‘with’ PwP. What
we gained from our second process was insight into the
motivating factors for supporting long-term engagement of
exergames in the home. Whilst it is undeniable that clinical
input is important when designing rehabilitative exergames
it is equally important that users be involved heavily in the
process. Future work is required to undergo long term
testing of an exergame, which responds to the design
requirements outlined within this study, in order to truly
assess if motivation can be maintained within the home.
ACKNOWLEDGEMENTS
With special thanks to Dadirayi Mhiripiri for her hard work
during this project. This research was funded through the
RCUK Digital Economy Program SIDE (EP/G066019/1).
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... pain, fatigue, anxiety and depression), which can further complicate the experience of living with the condition [46]. Previous research has explored the potential for using technology to help people with Parkinson's monitor and manage their symptoms [2,3,8,11,[26][27][28][29][30][31]; from wearable devices to support freezing episodes [3,7,26], speech [30,31], and drooling [29]; to gaming systems to support motor rehabilitation [2,28]. These types of technologies offer individuals an opportunity to gain a better understanding of their condition and how to manage it effectively, and ultimately regain a sense of control over their lives [15]. ...
... pain, fatigue, anxiety and depression), which can further complicate the experience of living with the condition [46]. Previous research has explored the potential for using technology to help people with Parkinson's monitor and manage their symptoms [2,3,8,11,[26][27][28][29][30][31]; from wearable devices to support freezing episodes [3,7,26], speech [30,31], and drooling [29]; to gaming systems to support motor rehabilitation [2,28]. These types of technologies offer individuals an opportunity to gain a better understanding of their condition and how to manage it effectively, and ultimately regain a sense of control over their lives [15]. ...
... Each workshop followed a similar format but remained fluid enough to allow for ebbs and flows in discussion, and variations in the group's needs [28]. We began each workshop with an open discussion around each person's experience of Parkinson's, their interest in the research topic and their general experiences with technology. ...
... The theme of the game is chosen according to the preferences of the target group (McNaney et al., 2015;Othlinghaus et al., 2011). A gardening theme was chosen, which is also an activity associated with relaxation and stress reduction (Scott et al., 2015). ...
... Unlike most commercial exergames, the movements in the game only serve as a means of interaction and not as a basis for evaluation of the game success. Because the assessment of movement in exergames was reported as not suitable for Parkinson's patients (McNaney et al., 2015). The success of the game is therefore not dependent on motor performance, which is influenced by the disease, but on abilities that are not influenced by the disease in mild to moderate Parkinson's disease (Poewe et al., 2017). ...
... The player who has matched the most pairs wins (Zwick & Paterson, 1993). The well-known game concept of Matching Pairs facilitates the target group's entry into the unfamiliar field of digital therapy support (McNaney et al., 2015;Nap et al., 2009). ...
Conference Paper
Full-text available
One of the most common neurodegenerative disorders that affects more and more people at an advanced age is Parkinson’s disease. Patients suffer from various symptoms and especially the motor restrictions and psychological symptoms worsen the quality of life of the affected persons. The physical therapy for this disease to improve motor performance and complementary exercises is characterised by repetitive training and patients often suffer from a strong exhaustion and lack of motivation due to their disease. To address these problems, a serious game concept for Parkinson's therapy was developed. The concept was created using the Design Thinking methodology for a user-centred design. The final result is the concept and prototype of a competitive multiplayer exergame that was developed to increase the motivation of the patients to participate through social play and the idea of competition in order to support the motor therapy of Parkinson’s disease patients.
... Moreover, the experience is interesting for them to use in comparison to a standard exercise session. McNaney et al. [23] also acknowledges the importance of an engaging experience in order to ensure a continuous use, therefore suggests the use of participatory design sessions towards identifying the interests of the audience. The existing examples of custom-developed games for rehabilitation and therapy of people with PD present some design guidelines for accessibility and alignment of in-game objectives with rehabilitation [11,18]; however, player engagement, motivation, and the impact of these for repeated sessions seem to be underexplored. ...
... We also did not include studies which use game-like interactive experiences for the diagnosis or assessment of disease progress or symptoms, or studies that utilize Kinect sensor (or other sensors commonly used for gaming platforms) for visualization of exercise without any game-like feature. Studies that are based on a game developed in a previous study are also excluded (such as [23] since it is an iteration study of [13]) unless the game is somewhat modified for the purposes of the new study, therefore the game is reviewed only once. As much as we acknowledge the presence of some similarities between symptoms of PD, some other chronic diseases such as Alzheimer's disease, and healthy aging, this review does not focus on, therefore not include any study that is not specifically directed at people with PD. ...
... Anche lo studio condotto da McNaney et al. (2015), relativamente alla progettazione e allo sviluppo di exergame riabilitativi con i PcP e i loro caregiver, ha evidenziato le modalità con cui questi gruppi di individui possano essere coinvolti in un processo di progettazione incentrato sull'utente, al fine di comprendere come questi prodotti riabilitativi possano essere progettati per riflettere i valori, gli obiettivi e gli stili di vita dei PcP, nonché motivare l'uso all'interno dell'ambiente domestico. ...
... Anche lo studio condotto da McNaney et al. (2015), relativamente alla progettazione e allo sviluppo di exergame riabilitativi con i PcP e i loro caregiver, ha evidenziato le modalità con cui questi gruppi di individui possano essere coinvolti in un processo di progettazione incentrato sull'utente, al fine di comprendere come questi prodotti riabilitativi possano essere progettati per riflettere i valori, gli obiettivi e gli stili di vita dei PcP, nonché motivare l'uso all'interno dell'ambiente domestico. ...
Book
In questo volume sono raccolti i risultati del programma di ricerca Home Care Design for Parkinson’s Disease, finalizzato alla definizione di buone pratiche progettuali per potenziare l’autonomia e la qualità della vita delle persone con malattia di Parkinson all’interno dell’ambiente domestico. Il programma, promosso e finanziato dalla Fondazione Zoé, è stato realizzato da un gruppo di lavoro multidisciplinare – che ha coinvolto l’Università di Firenze per l’area del design, l’Università di Torino per l’area della neurologia, l’Università Cattolica di Milano per l’area della sociologia, l’Universidade Federal de Minas Gerais (Brasile) per l’area dell’ingegneria della produzione industriale – in collaborazione con la Confederazione Parkinson Italia e l’Accademia Limpe-Dismov. Il volume propone un quadro introduttivo della malattia di Parkinson dal punto di vista medico e da quello sociologico, analizzando le principali e più frequenti aree di disagio e/o difficoltà sperimentate dalle persone con malattia di Parkinson durante le attività di vita quotidiana e di relazione. L’impostazione progettuale si basa sui principi del Design per l’inclusione e sull’approccio teorico e metodologico dello Human-Centred Design che, attraverso il diretto coinvolgimento degli utenti, hanno permesso di focalizzare l’attenzione sulla specificità di esigenze e aspettative delle persone con malattia di Parkinson e delle loro famiglie e di definire le diverse soluzioni progettuali. Specifici approfondimenti sono dedicati agli effetti emozionali collegati all’interazione con gli ambienti e i prodotti della vita quotidiana, e alle opportunità offerte dall’impiego delle tecnologie abilitanti che, dalla robotica ai dispositivi in- dossabili alle tecnologie di monitoraggio ambientale, possono offrire soluzioni concrete per il potenziamento dell’autonomia. La seconda parte del volume è dedicata alle Linee guida progettuali che rendono disponibili soluzioni e indicazioni operative per garantire la massima fruibilità, usabilità, sicurezza e gradevolezza d’uso degli ambienti interni della casa, dei suoi arredi e delle sue attrezzature. This volume collects the results of the research programme Home Care Design for Parkinson's Disease, aimed at defining good design practices to enhance the autonomy and quality of life of people with Parkinson's disease within the home environment. The programme, promoted and financed by the Zoé Foundation, was realised by a multidisciplinary work group - which involved the University of Florence for the area of design, the University of Turin for the area of neurology, the Catholic University of Milan for the area of sociology, the Universidade Federal de Minas Gerais (Brazil) for the area of industrial production engineering - in collaboration with the Parkinson Confederation Italy and the Limpe-Dismov Academy. The book proposes an introductory overview of Parkinson's disease from a medical and sociological point of view, analysing the main and most frequent areas of discomfort and/or difficulty experienced by people with Parkinson's disease during activities of daily living and relationships. The project approach is based on the principles of Design for Inclusion and on the theoretical and methodological approach of Human-Centred Design which, through the direct involvement of users, has made it possible to focus attention on the specific needs and expectations of people with Parkinson's disease and their families and to define the different design solutions. Specific in-depth studies are devoted to the emotional effects of interaction with the environments and products of everyday life and to the opportunities offered by the use of enabling technologies that, from robotics to wearable devices to environmental monitoring technologies, can offer concrete solutions for autonomy enhancement. The second part of the volume is dedicated to the Design Guidelines that provide solutions and operational indications to guarantee maximum usability, usability, safety and pleasantness of use of the home's interiors, furnishings and equipment.
... This was previously demonstrated in healthy older adults, using AVGs with a sufficient cognitive load while playing [60], and consequently yielding positive effects on cognitive function (prefrontal cortex activity) [61,62]. The use of commercial games, and a resulting lack of specificity in the tasks to address the rehabilitation needs of people with PD, is the second possible explanation for the absence of cognitive improvement in the PD population included in the AVG group [63]. This explanation has been put forward by the latter in a qualitative study, underlining the need for personalisation in interventions according to their specific needs, the objective being to maintain tasks instead of finding alternative compensatory strategies [64]. ...
Article
Purpose: We summarized the effectiveness of home-based active video game interventions on physical and cognitive functions, as well as quality of life in adults with Parkinson’s disease. We also assessed the feasibility, safety, adherence, and retention of benefits of these interventions. Method: We searched studies in eight databases from 1st March to 30th November 2020. Two authors independently performed the selection, data extraction and risk of bias evaluation (PROSPERO ID: CRD42020178138). Results: Nine studies were included in this systematic review (412 participants). All in all, home-based active video games were found effective in improving gait and balance functions in people with Parkinson’s disease, equivalent to usual care and conventional therapy. No conclusion can be drawn on cognition and quality of life. Home-based active video games seemed feasible, safe, and were enjoyed by people with Parkinson’s disease. The optimal dose, the need for supervision and the retention of benefits of these interventions are still to be determined. These results should be interpreted carefully, considering the limited number of included studies and their small sample sizes, the widespread heterogeneity of included studies and their medium average methodological quality. Conclusion: Future research should focus on the effects of home-based active video games on impairments specific to Parkinson’s disease, such as falls, freezing of gait and attention, as well as the dose, need for supervision and retention of the benefits of these interventions.
... This was previously demonstrated in healthy older adults, using AVGs with a sufficient cognitive load while playing [60], and consequently yielding positive effects on cognitive function (prefrontal cortex activity) [61,62]. The use of commercial games, and a resulting lack of specificity in the tasks to address the rehabilitation needs of people with PD, is the second possible explanation for the absence of cognitive improvement in the PD population included in the AVG group [63]. This explanation has been put forward by the latter in a qualitative study, underlining the need for personalisation in interventions according to their specific needs, the objective being to maintain tasks instead of finding alternative compensatory strategies [64]. ...
Preprint
Purpose We summarized the effectiveness of home-based active video game interventions on physical and cognitive functions, as well as quality of life in adults with Parkinson’s disease. We also assessed the feasibility, safety, adherence, and retention of benefits of these interventions. Method We searched studies in eight databases from 1st March to 30th November 2020. Two authors independently performed the selection, data extraction and risk of bias evaluation (PROSPERO ID: CRD42020178138). Results Nine studies were included in this systematic review (412 participants). All in all, home-based active video games were found effective in improving gait and balance functions in people with Parkinson’s disease, equivalent to usual care and conventional therapy. No conclusion can be drawn on cognition and quality of life. Home-based active video games seemed feasible, safe, and were enjoyed by people with Parkinson’s disease. The optimal dose, the need for supervision and the retention of benefits of these interventions are still to be determined. These results should be interpreted carefully, considering the limited number of included studies and their small sample sizes, the widespread heterogeneity of included studies and their medium average methodological quality. Conclusion Future research should focus on the effects of home-based active video games on impairments specific to Parkinson’s disease, such as falls, freezing of gait and attention, as well as the dose, need for supervision and retention of the benefits of these interventions. • IMPLICATIONS FOR REHABILITATION • Home-based active video games are effective in improving motor functions in people with PD. • No conclusion can be drawn regarding cognition in people with PD. • No conclusion can be drawn regarding quality of life in people with PD. • Home-based active video games seem feasible and safe, and are enjoyed by people with PD. • The dose, need for control and retention of the benefits still need to be determined.
... Studies that provided only the design methodological guidelines (for example, how to include people with Parkinson's disease in design activities; McNaney et al., 2015) were not included in the review. Disagreement about the eligibility of a study was resolved by full-text screening conducted by all three authors and resolution in a subsequent consensus meeting. ...
Article
Full-text available
This paper provides a systematic review of research articles published between 2010 and mid-2018 that have offered design guidelines for full-body interactive games for recreational purposes and physical exercise. From an initial 3562 retrieved database references, 22 articles were found to meet our predefined criteria and were included in the final review. The review of 22 articles resulted in the extraction of 107 design guidelines, which were grouped in 12 different categories: movement elicitation, mapping of movement, explicit movement guidance, player representation and game world, attention, feedback on player performance, player agency and customization, exertion, safety, universal design and social aspects. While the current body of guidelines was found to cover multiple aspects pertaining to the design of full-body interactive games, the conducted review also revealed a number of overarching concerns regarding the present state. Specifically, these concerns relate to (i) the hedonic–utilitarian divide in movement-related design guidelines of relevant literature, (ii) the lack of common structure for specifying guidelines, (iii) the lack of systematic development of guidelines, (iv) the issues related to the validity of the existing guidelines and (v) the limited focus on tangible interfaces in the present state of the art. In conclusion, the current review paints a somewhat questionable picture of the present state of the corpus of design guidelines for full-body games, with relatively large differences in the quality of the guidelines proposed in the individual articles and a lack of reference to already existing guidelines. In the longer run, these quality issues risk watering out the original meaning of the term design guideline and reducing the potential value design guidelines can offer in development of full-body interactive games.
... These studies put forward the concept of "active ageing" often interchangeably used with terms such as "successful" or "healthy" ageing, to promote a more positive, anti-decline narrative of later life [66]. More specifically, the active ageing approach maintains that increased and longterm participation in social, economic, cultural, spiritual, and civic issues are beneficial for older adults [49]. However, similar to studies that emphasize the link between inactive lifestyles and ill health, the active-ageing concept tends to be oriented toward individual behaviour change and the provision of opportunities to become more active. ...
Article
Full-text available
Contemporary policy on ageing overwhelmingly focuses on active ageing and achieving a sustainable increase in disability-free years, leading to an agenda that promotes interventions that often focus on deficits of older persons with little consideration of their perspectives on physical activity. As the integration of technology to support physical activity routines becomes more common, this trend also becomes relevant to the Human-Computer Interaction (HCI) research community. In this article, we present findings from a structured search of technical systems addressing physical activity among older adults that were published at the most cited HCI venues. Drawing from Thematic Analysis, we explore how the model of active ageing informs existing research, and how it is operationalized in technology design. We find that the deficit-focused perspective on ageing is reflected in many technology solutions published at the most visible HCI venues, and discuss shortcomings and strengths of present research to help guide discourse and future work in HCI.
Article
Full-text available
We describe a qualitative study investigating the acceptability of the Google Glass eyewear computer to people with Parkinson's disease (PD). We held a workshop with 5 PD patients and 2 carers exploring perceptions of Glass. This was followed by 5-day field trials of Glass with 4 PD patients, where participants wore the device during everyday activities at home and in public. We report generally positive responses to Glass as a device to instil confidence and safety for this potentially vulnerable group. We also raise concerns related to the potential for Glass to reaffirm dependency on others and stigmatise wearers.
Article
Full-text available
Computer based gaming systems, such as the Microsoft Kinect (Kinect), can facilitate complex task practice, enhance sensory feedback and action observation in novel, relevant and motivating modes of exercise which can be difficult to achieve with standard physiotherapy for people with Parkinson's disease (PD). However, there is a current need for safe, feasible and effective exercise games that are appropriate for PD rehabilitation. The aims of this study were to i) develop a computer game to rehabilitate dynamic postural control for people with PD using the Kinect; and ii) pilot test the game's safety and feasibility in a group of people with PD. A rehabilitation game aimed at training dynamic postural control was developed through an iterative process with input from a design workshop of people with PD. The game trains dynamic postural control through multi-directional reaching and stepping tasks, with increasing complexity across 12 levels of difficulty. Nine people with PD pilot tested the game for one session. Participant feedback to identify issues relating to safety and feasibility were collected using semi-structured interviews. Participants reported that they felt safe whilst playing the game. In addition, there were no adverse events whilst playing. In general, the participants stated that they enjoyed the game and seven of the nine participants said they could imagine themselves using the game at home, especially if they felt it would improve their balance. The Flow State Scale indicated participants were immersed in the gameplay and enjoyed the experience. However, some participants reported that they found it difficult to discriminate between different types and orientations of visual objects in the game and some also had difficulty with the stepping tasks, especially when performed at the same time as the reaching tasks. Computer-based rehabilitation games using the Kinect are safe and feasible for people with PD although intervention trials are needed to test their safety, feasibility and efficacy in the home.
Conference Paper
Full-text available
Patients with Parkinson’s disease often experience freezing of gait, which bears a high risk of falling, a prevalent cause for morbidity and mortality. In this work we present GaitAssist, a wearable system for freezing of gait support in daily life. The system provides real-time auditory cueing after the onset of freezing episodes. Furthermore, GaitAssist implements training exercises to learn how to handle freezing situations. GaitAssist is the result of a design process where we considered the input of engineers, clinicians and 18 Parkinson’s disease patients, in order to find an optimal trade-off between system wearability and performance. We tested the final system in a user study with 5 additional patients. They reported a reduction in the freezing of gait duration as a result of the auditory stimulation provided, and that they feel the system enhanced their confidence during walking.
Article
Full-text available
This paper reports findings from a series of participatory design workshops with ten people over eighty years old. The focus of the workshops was new banking technologies for the older old. Participants were asked to discuss their current experiences of banking and given packs of concept cards which contained design sketches and brief outlines of concepts for new financial services. The designs on the cards were deliberately provocative and aimed to encourage criticism and debate. Participants wrote and drew on the cards and the workshops were recorded and transcribed. The participants were extremely critical of current banking practices and most of the new concepts we presented to them. Their questions and comments led to a number of insights and further iterations. The paper argues that critique is an essential resource for design, both in terms of identifying problems and iterating ideas.
Conference Paper
Writers and practitioners in dementia care have invoked personhood to offer potential for preserving the agency of people living with dementia. In this context we use personhood to explore how relationships bring agentive potential to experience-centered design through a co-creative, design-led inquiry with Gillian, a woman living with dementia, and John her husband. We designed bespoke probes to empathically engage the couple in the design of both jewellery and digital jewellery to support Gillian's personhood. Our design activity addressed the relationships involved in the context of Gillian's family life and the progression of her illness and how they could be mediated technologically. Reminiscence became, through Gillian and John's own hands, acts of sense making and legacy. The process of design became the way of conducting the inquiry and the designed artifacts became ways of posing questions to make sense of our experiences together.
Conference Paper
Writers and practitioners in dementia care have invoked personhood to offer potential for preserving the agency of people living with dementia. In this context we use personhood to explore how relationships bring agentive potential to experience-centered design through a co-creative, design-led inquiry with Gillian, a woman living with dementia, and John her husband. We designed bespoke probes to empathically engage the couple in the design of both jewellery and digital jewellery to support Gillian's personhood. Our design activity addressed the relationships involved in the context of Gillian's family life and the progression of her illness and how they could be mediated technologically. Reminiscence became, through Gillian and John's own hands, acts of sense making and legacy. The process of design became the way of conducting the inquiry and the designed artifacts became ways of posing questions to make sense of our experiences together.
Conference Paper
Parkinson's disease (PD) is a highly prevalent and disabling condition, requiring frequent medication adjustments. In parallel, non-adherence to medical treatment might lead to severe consequences. Therefore, a solution to monitor PD symptoms, allowing neurologists to make informed decisions about medication adjustments, and one which could promote medical treatment adherence would be beneficial for both the patient and the medical doctor. In this paper we present the rationale and user-centred process for the design of four smartphone applications for the self-management of PD. We present the methods for evaluation and the results of usability tests. The results show that user-centred methods were efficient and that people with PD were able to achieve high task completion rates on usability tests with three of the applications for PD self-management. Future work should focus on detailed improvement of touch screen sensitivity to optimize error prevention.
Article
Stroke is the leading cause of long-term disability among adults in industrialized nations; approximately 80% of people who survive a stroke experience motor disabilities. Recovery requires hundreds of daily repetitions of therapeutic exercises, often without therapist supervision. When performing therapy alone, people with limited motion often compensate for the lack of motion in one joint by moving another one. This compensation can impede the recovery progress and create new health problems. In this work we contribute (1) a methodology to reliably sense compensatory torso motion in the context of shoulder exercises done by persons with stroke and (2) the design and experimental evaluation of operant-conditioning-based strategies for games that aim to reduce compensatory torso motion. Our results show that these strategies significantly reduce compensatory motions compared to alternatives.