1. Jooay App
Promoting participation in leisure for children
with disabilities
Annette
Majnemer,
OT,
Ph.D &
Keiko Shikako-­‐Thomas,
OT,
Ph.D
McGill
University
School of
Physical
and
Occupational Therapy

2. What does research say about
leisure and children with
disabilities?
Annette
Majnemer,
PhD,
OT
Vice-­‐Dean
Education,
Faculty
of
Medicine,
McGill
University

3. Importance of
leisure to health
Ø Physical
health
benefits
Ø Mental
health
benefits
ü WHO
Global
Strategy
on
Diet,
Physical
Activity
and
Health
ü Canada’s
Healthy
Living
Strategy
ü Position
Papers
of
Canadian
&
American
Pediatric
Societies
ü ParticipACTION

4. Leisure and children with
disabilities
• Participation
is
decreased,
particularly
for
active
physical
activities
Imms,
2008;
Law
et
al,
2006;
Maher
et
al,
2007;
Majnemer et
al,
2008;
Michelsen
et
al,
2009
• High
level
of
enjoyment
of
leisure
activities
• They
prefer
social
and
active
physical
activities
Shikako-­‐Thomas
et
al.,
2014,
Bult et
al.,
2014;
Dahan-­‐Oliel et
al.,2015

5. Factors at play
• Developmental
impairments,
activity
limitations
• Personal
factors
ü Age
ü Gender
ü Culture
ü Preferences
ü Motivation
ü Self-­‐efficacy,
self-­‐perception
• Environmental
factors
ü SES,
family
environment
ü Access
to
information
ü School
setting
ü Rehab
services
ü Availability
of
programs
ü Policies
Shikako-­‐Thomas
et
al.,
2013;
Bult et
al.,
2014;
Anaby et
al.,
2014;
Dahan-­‐Oliel et
al.,
2014

6. Participation as a right
üUN
Convention
on
the
Rights
of
Persons
with
Disabilities
(CRPD
2006)
“the
right
to
live
in
dignity,
with
equal
rights
and
opportunities”
üUN
Convention
on
the
Rights
of
the
Child
(CRC
1989)
“the
right
to
play”
In
the
2017
Concluding
observations:
• Children
in
segregated
schools
not
benefiting
from
after-­‐school
programmes
• Ensure
earmarked
budget
allocations
for
children
with
disabilities
Convention
on
the
Rights
of
Persons
with
Disabilities

7. What can we change?

8. Access to the playing field
Needs
&
Access

9. What research says about interventions in the
community promoting participation
• Adapt
roles
to
fit
children’s
abilities
• Match
children
with
mentors
• Create
inclusive
community
spaces
• Collaborative
networks:
staff,
caregivers,
specialists
across
networks
• Training
community
workers,
caregivers,
volunteers,
city
counselors
• Training
on
physical
literacy
• Personalization
of
programs:
meeting
individual
needs
• Adaptive
equipment
• Universally
accessible
environments
(built
and
equipment)
• Financial
support
• Peer
mentors
• Technical
specialists
(e.g.
therapists,
trained
educators)
to
support
adaptations
Capacity Building AccessInclusion

10. Where do you find leisure information?
Online
46.9%
Newspapers
13.6%
City Guide
32%
Other
parents
25.9%
Ask teachers
10%
Ask
Clinicians
40% N=87
families
of
school-­‐age
children
with
cerebral
palsy
in
Quebec
CP2: Community Partners for Children’s Participation

11. Income and information
N=87
Is the family income sufficient to support
leisure participation?
Do family members know about adapted
leisure opportunities?

12. How do we overcome some of
these barriers?
Keiko
Shikako-­‐Thomas,
PhD,
OT
Canada
Research
Chair
in
Childhood
Disability
Assistant
professor,
McGill
University
School
of
Physical
and
Occupational
Therapy

13. 13
Places
Motivation,
accountability
Passive
leisure
-­‐
music
People
70% of Canadians
use a smart phone
ü Options
ü Accessibility
ü Close to where you live/work
ü Practical
ü Fun
ü Engaging
ü Builds community
What Apps do you use for leisure?

14. Let’s talk solutions!
Child Health Initiatives Limiting Disabilities through Leisure
CHILD LeisureNET
Bringing players together
Forums
in
Montreal,
Toronto,
Vancouver,
Calgary
INCLUDING
youth
with
disabilities,
parents
and
policymakers
ØWhat
does
everybody
have
to
say
around
the
table?
ØWhat
are
the
identified
priorities?
ØWhat
are
the
actionable
items?

15. Ideas for action
1. Jooay App
2. Peer
mentorship
for
parents
and
youth
3. School-­‐based
programs
4. Policy
tables

16. Our solution
Ø To
create
a
central
list
of
adapted
leisure
resources/activities/programs
that
could
be
used
by
families,
health
care
providers,
community
programs
and;
Ø Provide
an
online
community
of
support for
parents
and
youth.
Keiko
Shikako-­‐Thomas,
Annette
Majnemer

17. Parents
Youth with disabilities
Healthcare Professionals
Educators and Teachers
Community organisations
Provincial and national organisations
TARGET
AUDIENCE

18. 18
Play with Jooay
Search
for
a
specific
activity
Add
an
activity
Share
your
experiences
and
questions
Connect
with
other
users
Find
relevant
resources

19. www. .com

20. www. .com
157 only in Montreal!

21. JOOAY across Canada
BC AB SK MB ON QC NB NS PEI NL
150 237 45 26 359 302 13 115 14 25

22. Jooay Engagement
Number of users 1050
Number of activities 1500
activities
Active Users each Month 60
(iOS
+
Android)
Number of Sessions each Month 200
(iOS+Android)
Facebook Engagement each Month 300

23. Who are the JOOEURS?
Over
1000
users

24. Legend
Outreach
Meeting
Conference
Community
Event
Media
Promotion x Engagement
0
10
20
30
40
50
60
70
80
90
100
January February March April May June July August September October November December
Number
of
Active
Users
Number
of
Active
Users

26. “I
thought
everyone
who
was
on
it
was
contributing,
was
extremely
responsive,
and
respectful,
and
they
had
good
ideas...I
mean
I
think
these
are
people
I
would
like
to
eventually
meet
with.”
-­‐ Parent
.

27. Can a stakeholder-informed technology
improve access to information and
promote leisure participation for children and youth with
disabilities?
OUR RESEARCH

28. Map
existing
users
Identify
patterns
of
use
Identify
needs
and
suggestions
for
improvement
Points
and
strategies
for
dissemination
Map
inequities
in
service
provision
Inform
policy
Partner
with
cities
Create
and
test
communities
of
support
for
families
and
youth
Engage
community
organizations
and
create
value
in
promoting
and
sustaining
inclusive/adapted
activities
Social
Network
Analysis

29. Health Behavior Framework

30. The way
forward

31. Cities
Countries
Community
Organizations
Parents
Health
Care
Providers
Educators
Athletes
Coaches
Children
youth
Families

33. Associated Projects
33
CHILD
LeisureNET
Toolkit:
Inclusive
Physical
Literacy
RIGHTS:
Policy
Dialogue
on
Childhood Disability
www.childhooddisability.ca
Policy
Table
on
Leisure
Participation
of
Children
with Disabilities

34. Jooay team
• Keiko
Shikako-­‐Thomas,
OT,
PhD,
Co-­‐creator
• Annette
Majnemer,
OT,
PhD,
Co-­‐creator
• Valérie
Grand’Maison,
research
coordinator
• Christina
Sooklaal,
Kinesiologist,
MSc
candidate
McGill
• Bob
Simpson,
Physical
educator
MAB-­‐Mackay
school
• Emma
Steven,
OT,
MAB-­‐Mackay,
Co-­‐investigator
• Melanie
Bergthorson,
OT,
MAB-­‐Mackay
Rehabilitation
Centre,
Co-­‐investigator
• Joanne
Charron,
Montreal
English
School
Board,
Parent,
Co-­‐investigator
• Nick
Katalifos,
Montreal
English
School
Board,
Parent
• Marla
Vineberg,
Giant
Steps
School,
Montreal,
Co-­‐
investigator
• Helene
Louise,
Micha
Books,
Parent,
Co-­‐investigator
• Stephanie
Glegg,
OT,
co-­‐investigator,
Sunny
Hill
Kids
Health
Centre,
Vancouver,
Co-­‐investigator
• Lesley
Wyart,
PT,
PhD,
co-­‐investigator,
University
of
Alberta,
Edmonton
• Janet
McCabe,
RN,
PhD,
co-­‐investigator,
University
of
Ontario
Institute
of
Technology
• Paul
Yoo,
PhD
Candidate,
McGill
University
• Ebele
Mogo,
PhD,
postdoctoral
researcher
• Merhnoosh Movahed – Communication
Hub
Project
• Lauren
Schellenberg,
research
assistant
– Jooay
community
of
support
Provincial
Ambassadors
• Sarah
MacEachern,
MD,
Alberta
Children’s
Hospital
• Linda
Martin
and
Sarah
Streisel,
Saskatchewan
• Mindy
Tucker,
Manitoba
• Christina
Dunca,
British
Columbia
• Dave
Sora,
Ontario
• Julie
Brocklehurst,
Newfoundland
• Altergo,
Quebec
34

35. Our Partners
35

36. Questions?

37. Merci!
.com
@JooayApp
@ChildDisLINK
@KShikakoThomas
@ChildBrightNet
@BRILLEnfant
www.jooay.com
www.childhooddisability.ca
www.child-­‐bright.ca
keiko.thomas@mcgill.ca
annette.majnmer@mcgill.ca
jooay@childhooddisability.ca