16/04/2014
Background
BSc., MSc. Media and
Communication Sciences
University of Duisburg-Essen
PhD Student Computing Science
Culture Lab
Digital Interaction Group
~70 ppl (Academics, RAs & PhDs)
Multi-disciplinary team
Technology to
Promote DBT Skills
Practice & Mental
Wellbeing
Human-Computer-Interaction
research
Anja Thieme
Newcastle University
Digital Interaction @ Culture Lab
http://di.ncl.ac.uk/
Background and Motivation
Spheres of Wellbeing
Specialist Forensic Service
for People with LD
Spheres of Wellbeing
Collaboration: Newcastle
University & NHS Trust
Women in MSU
Participants
Group of 6 women in medium secure services
Age range 18-43
Mild to moderate Learning Disability (IQ range 53-69)
ICD-10 Diagnosis ranges from Borderline Personality Disorder
to Anxiety and Depressive Disorders or Atypical Autism
How can we design technology
to promote the mental wellbeing
of the women?
How can technology support the
women in the learning &
practice of vital therapeutic
skills?
1
16/04/2014
Borderline Personality Disorder
Approach: Collaboration with Staff
Characteristics
Emotion regulation difficulties
Impulsivity and self-harm
Cognitive disturbances (‘emptiness of self’)
Interpersonal difficulties
Person-focused design approach
Close collaboration with hospital staff
Mutual visits to hospital & Culture Lab
Care Pathway
Person-Centred Care
Dialectical Behavioural Therapy (newly introduced)
Challenges & Opportunities for Design
Treatment & wellbeing needs
Fit within hospital practices (person-centred care)
DBT agenda: mindfulness, distress tolerance & sense of self
Self-harm, impulsivity or aggression
Safety of technology & research materials
Learning Disability
Accessiblity: avoid heavy text, make use of physical forms, be
stimulating, visual or versatile
Challenges & Opportunities for Design
More personal/ human technology design
Less technical/ medical intervention; not just a digital
translation of therapy contents
Addressing ‘engagement’ challenge
Secure hospital services
Personal possessions mostly prohibited
Objects can act as extension of self (design for more personal
technology relationship)
Spheres of Wellbeing
Technology Design Concept
Spheres of Wellbeing
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Mindfulness Sphere
Mindfulness Sphere
Allows for careful observation of heartbeat moment by
moment
Envisioned to cultivate a new, experiential way of
bringing awareness to this bodily sensation
Provides biofeedback: self-regulation
Calming Sphere
Identity Sphere
Small, purse-like artefact
Bead bracelet (non-digital)
Technology safely encased at the inside
Concept of worry beads
Screen visible at the inside
Something physically to hold on to
Symbol of safety & calm
Use for mindfulness exercises, to
practice self-control or relaxation
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Identity Sphere - videos
Co-created with each woman
Reflect positive, meaningful
experiences & interests of the
person
Allow connection to positive
aspects of their self + be
reminiscent of things that are
meaningful in their lives
reassuring
internal validation of self
Camera scans
environment for QR
codes (at centre 0f
Mandala pattern)
Enable to perform to, and
construct their identity through,
others
Triggers short videos
Creative Activities
Spheres of Wellbeing
Creative Sessions
Enjoyment
Kim: “I really look forward to
this session.”
Lucy: “We are having fun,
aren't we."
Remarkable commitment
2-3 hour sessions, few breaks
Hands’ on, tactile, creative
& versatile, person-focused
(1 on 1 sessions)
“Me time” away from the
flat and the other women
Creative Sessions
Women impressed with own
creations & individual designs
Sense of achievement & selfpride
Staff-38: “(…) and I think just
they were just proud of
themselves I think that it's
kind of, 'cause they are really
lovely objects, I think they are
just proud of themselves that
they'd been able to achieve
that and in that time, just for
themselves to be able to
commit to it."
4
16/04/2014
Creative Sessions
Making own choices, personal
responsibility
Staff-09: "(…) 'cause I think they
got a lot out of the interaction of
creating it, creating something
new, something individual and you
know, the actual being part of it
and sort of, kinda being left with,
you know, as like 'Right, this is
yours, this is what you've got to do
- but you do it' you know, (…) it's
totally their responsibility and I
think they really enjoyed that…”
Self-confidence & personally
meaningful engagements
Creative Sessions
Positive interactions with
staff (during & after
sessions)
Playful, positive, more
balanced inter-personal
communication (banter
& laughter)
Recognition &
acknowledgement of
achievements
Alex: "It makes you feel good
inside, 'cause I'm doing something
for myself."
Lessons Learned
Very different to other ward activities
Planning & more positive risk taking?
Focus on abilities, interest & achievements
Very enjoyable to staff
But: Compromising safety protocols
Deployment &
Evaluation Methods
Interviews:
Deployment & Evaluation
Spheres of Wellbeing
6 women (week 1 & 4)
17 staff (week 4)
Recoded staff
observations
Event cards & diaries
Log data of digital
Spheres (week 1 to 15)
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Spheres Perception
Spheres Perception
Precious personal
possessions
Looking after the
artefacts
Sense of ownership
Being protective of
them
Sally about her Mindfulness
Sphere:
“I love it. It's mine. I really do.“
When asked if she would give it
away, she responds:
“Even if my mum would try to
have them, I wouldn’t let her
take it."
“Show & Tell” about
the Spheres
Self-pride & recognition
by staff and peers
Staff- 26:
“(…) Kim for example, she
seemed really, really proud of it,
which is a really good thing,
because it's, you know, possible
she might not have a lot of
things that she is proud of, but
you could just see she was sort
of brimming with pride, showing
me the Sphere of Wellbeing,
and showing me her pictures
and stuff, she loved it (…)."
Belongingness to
Family
Show & Tell + Giving
bracelets away
Kim:
"I gonna look after this, I gonna
keep it all in this box.“
Alex: [almost dropping her ball]
“Ah, I can't break that, bloody
hell, it means a lot to me."
“Show & Tell” to
Staff
Sharing expertise about
the Spheres
Women: Self-confidence
Staff: Get to know
interests of women
Staff-48: [about Janet]
“She has talked to me about
making it, when she's doing the
game, talking me, she had to
talk me through the game, she
knows more than me (…)”
Belongingness to
Family
Positive interactions
with family
S-46 about Sally (eventcard):
Alex:
“I used it on my visit yesterday, at
my mums. Showed my mum what it
is and then when my sister seen the
other one 'Alex can I have it, it looks
really nice' I went 'Alright, then
have it'.
When asked what her mum thought
about the bracelet, Alex:
"She loves the bracelet, she won't
take it off. She won't take it off. (...)
It was her birthday on Saturday
anyway, so I thought I've given it to
her for her birthday."
“Sally said she wanted to get her
ball out, sat at the dining room
table - watched the colours change
- then said was going to get her
music wallet - started to listen to
[music artist] at this point Sally
said she wanted to phone her Nan.
Sally phones her Nan and played
the music ‘[artist] -family' [video]
down the phone to her nan. Sally
then went on to tell her Nan about
the music and that song reminded
her of her nan”
6
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Objects of comfort
Feeling connected,
Self-confidence
Staff-44: [about Janet]
“(…) she said she liked to look at
it [the purse], it made her feel
happy, made her feel that she
wasn't on her own (…) with the
ball she also said she was, she
would sit in her room and feel
close to something."
Alex :
"On my mum one, it makes me
feel more confident like that I
want to get out of here. I look at
my mum. I think, I think that I
should have more confidence in
myself."
Coping with Distress
Staff expectations and
disappointments
Staff-07:
“(...) Erm, I've tried to, if people
have been in a bad place to offer
access to, to the objects as one
of the strategies, but it hasn't
always been well received. Sally
has often said 'no' and Lucy once
threw the purse at me [laughs],
but, she didn't want to use it,
but, yeah... "
Challenges &
Complexities
Inter-individual
differences in…
Relaxation & Calm
Sally: [about her MSphere]
“It sends me to sleep a lot. I like
the lights. It reminds me when I
was little, and the lights you can
get.“
Staff-38:
“Alex, she said she'd gone in her
room just to watch the ball change
colours and she'd watched her
heart rate and stuff, she'd actually
say she'd been a bit stressed and
she'd used it to calm her down,
but I think she, 'cause she wasn't
stressed when she went into her
room, I think she was just feeling a
bit lonely, a bit low I think. I think
she did use it, but I think, she said
she looked up at the lights, I think
it did calm her down. “
Self-Distraction
Staff-22 (eventcard):
“Zoe was prompted to use her
objects after feeling low - was
being nursed on level 3
supervision in her bedroom. Zoe
listen to her music app watched
the ball change colours in the
dark. Zoe settled returned back
to communal lounge started to
interact with peers and staff.”
Staff-48: [about Janet]
"I think it takes her mind,
occupies her mind, makes her
focus on other things rather
than what was upsetting her in
the first place, I think it takes her
mind away and she gets, it helps
her focus on something else.“
Challenges &
Complexities
Difficult ward
environment
…motivation & interests
Staff dynamics
…cognitive abilities &
understanding of DBT
External research
project vs. integration
in hospital services &
‘champion’ in place
…risk behaviours & access
… changing mental health
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16/04/2014
Summary & Implications
Summary & Implications
Collaboration with hospital staff
Uses of the Spheres for Mental Health & Wellbeing
Fundamental in the design and evalution process:
understanding the complex condition of the women, their
therapy, secure services & ethics
Acts of Show & Tell
Recognition of Achievements: Nurturing Self-Pride & Self-Worth
Spheres created opportunities for positive, balanced
communication with staff
Spheres design reflect a series of trade-offs (challenging
context)
Importance of ‘Belongingness’ to Staff, Peers & Family
Coping with distress vs. managing wellbeing
Co-creation process with the women
Independence (miracle tool) vs. Interdependence
(need for personal support)
Carefully scaffolded, person-focused
Enjoyable and worth-while in its own right
Potential for mindfulness and more DBT focused
activities not yet fully explored
More personal relationship with Spheres
Thank you!
References
Clayton, P. From insecure attachment to (partial) inter-subjectivity (fearful aloneness to safely being
with others). Journal of Learning Disability and Offending Behaviour 1, 1 (2010), 33-43.
Christensen, K., Riddoch, G., and Eggers Huber, J. Dialectical Behavior Therapy Skills, 101 Mindfulness
exercises and other fun activities for children and adolescents. A learning supplement. AuthorHouse,
2009.
Durbin, L.S. The history of beads: From 100,000 B.C. to the present. ABRAMS, 2009.
Galvin, M. (2011). How do people perform their identity in the way in which they personalise their
space? Diploma thesis in Psychology, University College Cork, Ireland.
Lew M., Matta C., Tripp-Tebo C., and Watts D. DBT for individuals with intellectual disabilities: a
programme description. Mental Health Aspects of Developmental Disabilities 9 (2006), 1-12.
Linehan, M.M. Cognitive-behavioral treatment for borderline personality disorders. New York, Guilford,
1993.
Linehan, M.M.. Skills Training Manual for Treating Borderline Personality Disorder. New York, Guilford,
1993.
Lönnebo, M., Welin, C., and Johansson, C. Pearls of Life: for the personal spiritual journey. Wild Goose
Publications, 2007.
Palmer, R.KL. Dialectic behaviour therapy for borderline personality disorder. Advances in Psychiatric
Treatment 8 (2002), 10-16.
Robertson, B. The adaption and application of mindfulness-based psychotherapeutic practices for
individuals with intellectual disabilities. Advances in Mental Health and Intellectual Disabilities 5, 5
(2011), 46-52.
Contact
Anja Thieme
PhD Student
Culture Lab
Newcastle University
anja.thieme@ncl.ac.uk
+44 0191-2464637
Funded by
References
Sakdalan, J.A., Shaw, J., and Collier, V. Staying in the here-and-now: A pilot study on the use of
dialectical behaviour therapy group skills training for forensic clients with intellectual disability. Journal
of Intellectual Disability Research 54, 6 (2010), 568-572.
Soler, J., et al. Dialectical behaviour therapy skills training compared to standard group therapy in
borderline personality disorder: A 3-month randomised controlled clinical trial. Behaviour Research and
Therapy 47 (2009), 353-358.
Swenson, C.R. How can we account for DBT’s widespread popularity? Clinical Psychology: Science and
Practice 7 (2000), 87-91.
Thieme, A., Wallace, J., Johnson, P., McCarthy, J., Lindley, S., Wright, P., Olivier, P., & Meyer, T.D. (2013).
Design to promote mindfulness practice and sense of self for vulnerable women in secure hospital
services. In Proc. CHI 2013, 2647-2656.
Thieme, A., Wallace, J., Thomas, J. T., Chen, K.L., Krämer, N., & Olivier, P. Lover's box: Designing for
reflection within romantic relationships. International Journal of Human Computer Studies, 69(5), 2011,
283-297.
Verheul, R., et al. Dialectical behaviour therapy for women with borderline personality disorder: 12month, randomised clinical trial in the Netherlands. British Journal of Psychiatry 182(2003), 135-140.
Wallace, J., Thieme, A., Wood, G., Schofield, G., and Olivier, P. Enabling self, intimacy and a sense of
home in dementia: An enquiry into design in a hospital setting. In Proc. CHI 2012, 2692-2638.
Williams, M., Teasdale, J., Segal, Z., & Kabat-Zinn, J. The mindfulness way through depression. Guilford
Press, 2007.
Yen, S., Zlotnick, C., and Costello, E. Affect regulation in women with borderline personality disorder
traits. The Journal of Nervous and Mental Disease 100, 10 (2002), 693-696.
Statistics
Amount of interaction events with Identity and Mindfulness Spheres
across the first 15 weeks of the deployment
Identity Sphere
(n = 5)
Mindfulness
Sphere (n = 6)
50
45
40
35
30
25
20
15
10
5
0
Week 1 Week 2 Week 3 Week 4 Week 5 Week 6 Week 7 Week 8 Week 9 Week 10 Week 11 Week 12 Week 13 Week 14 Week 15
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16/04/2014
Statistics
Statistics
Amount of events and their duration (in sec)
Amount of videos
Overall amount and types of videos triggered by each woman
N
mean
SD
median
min
max
triggered per event
(MD)
triggered overall
played
partially
played
fully
Zoe
9
423.4
256.1
348
193
1021
3 (max = 8)
37
37
9
45
Janet
15
377.9
336.6
255
35
1374
2 (max = 4)
29
29
24
40
Lucy
19
1084
1005
600
178
3490
1 (max = 6)
44
44
49
Kim
20
510
509
393
25
1770
2.5 (max = 19)
70
69
25
Sally
34
524.9
397.8
439.5
58
1764
3 (max = 14)
119
115
74
35
30
25
20
15
10
Continuous heartbeat signals
6
356
453
11
22
1064
14
4
477
1
49
16
255
5
233
285
33
14
582
2
19.5
4
275
Kim
9
254
225
267
30
633
2
37
4
389
Sally
16
221
229
140
21
717
1.5
30
4
268
Alex
21
165
192
94
20
810
1
38
5
614
Lucy
0
Lucy
Janet
Zoe
Kim
Football
Janet
5
2
Family
1661
Animation
17
Music
174
Animation
531
max
Family
406
min
Music
10
Average (MD)
Music & Cats
Zoe
No. of signals per event
(MD)
Animation
Max
Animation
min
Family
median
Comp. Games
SD
Music
mean
Music
N
No. heartbeats per signal
Football
Amount of events and their duration (in sec)
Sally
9