Enhancing social participation in
young people with complex
communication needs: Evidence
based strategies for supporting access
to online social networking
Pammi Raghavendra. Ph.D.
Senior Lecturer, Disability & Community Inclusion, School of Health Sciences
Flinders University, Australia
Parimala.raghavendra@flinders.edu.au
ISAAC-Israel Annual Conference, Tel Aviv
7 July 2014
Funded by: Channel 7 Children’s Research Foundation, SA
Outline
• Importance of social networks for adolescents with and
without disabilities;
• Internet and young people
• Research study:
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–
–
–
–
–
Aim
Method
Tools used
Intervention strategies
Outcomes
Barriers & Facilitators
Adolescence and Social
Participation
• Important for psychological health, wellbeing, social adjustment and general
health outcomes (Corsano, et al., 2006, Eriksson, et al.,
2012, Waldrip et al, 2008).
• Some authors have suggested given
the impact on healthy development
health based interventions should focus
on improving social relations (Ericksson, et
al.,2012, O’Connor, et al., 2011).
Social Networks of children with
disabilities
• Reduced social networks in children and
adolescents with disabilities
(Raghavendra et al., 2011a, 2012; Thirumanickam et al., 2011)
• Children and young people with disabilities have
fewer friendships, are more socially isolated, and
at increased risk of social impairment
(McMaugh & Debus, 1999; Nadeau & Tesser, 2006)
Internet Use and Young People
• “Digital native” generation or “Net Generation”
– 92% children & young people in Israel under the age of 18 use the
Internet; about 86% use it every day (Dror & Geshon, 2012; cited in Schreuer
et al., 2014).
– 79% of Australian children (2.2 million) access the Internet during or
outside school hours (ABS 2010 – data for 12 months to April 2009).
– 90% of 12-17% year olds and 97% of 16-17 year olds regularly used
social networking services (ACMA, 2009a, 2009b)
Internet Use and Young
people with disabilities
• Survey of Internet Use
(Newman et al., 2010; Raghavendra et al., 2011b; Raghavendra et al., 2012)
• Online social networking use
(Lewis, 2010)
• Perceptions of using Digital technology
by young people who use AAC (Hynan et al., 2014)
• Online peer support intervention
(Barnfather et al., 2011; Stewart et al., 2011)
Mobile Technology & people
who use AAC
• Individuals who use AAC ‘have a need
for, and a right to, the same range of
communication options available to
everyone else’
(RERC on Communication Enhancement,
2011: 3).
Aim
To determine whether strategies to support using
the Internet for social networking could facilitate the
social participation of children with physical disability
or acquired brain injury (ABI)
Inclusion criteria for
Participants
• Children with acquired brain injury (ABI) or
physical disability (PD) between 10-18 yrs
• Child, parent and/or therapist thinks that
child might benefit
• Children need to be at symbolic level of
communication; No severe cognitive
difficulties
Participants with CCN
• 5 Participants
• Mean age: 13;3
• Gender:
3 Males, 2 Females
4
5
MACS
3
AAC systems
GMFC
2
10;6
Sex Diagnosis
S
CFCS
Perso
1
Age
School
Participants
CCN
PODD™ ^with
M Other PD
III
I
I
Mainstream
Primary
15;6
F
Other PD
iPad™,
iPhone™,
Proloquo2go™
III
I
I
Special class
High
14;3
M
CP
PODD™
Dynavox
Maestro™,
IV
IV
IV
Special class
High
13;7
F
Other PD
PODD™
Dynavox V™,
iPad,
Proloquo2go™
III
II
II
Special class
High
12;3
M
CP
Tobii™ C12,
Grid2™: Word
Power™
V
V
V
Special class
Primary
Pre-Post intervention assessments
• Problem areas identified using the COPM (Law et al., 1990)
• Goal Attainment Scale (GAS) (Kiresuk & Sherman, 1968)
• Social Networks - Circles of Communication partners
(Blackstone & Hunt Berg, 2005)
• Asher Loneliness and Social Dissatisfaction Questionnaire
for Children (Asher et al., 1985)
• Beck Self Concept Inventory for Youth
(SCI - BYI-II) (Beck et al., 2005)
• Participants and parents interviewed (post)
Canadian
Occupational
Performance
Measure
(COPM)
Canadian
Occupational
Performance
Measure
(COPM)
Social Networks
(Blackstone & Hunt Berg, 2012)
•
•
•
•
•
Circle 1 = life partners
Circle 2 = good friends
Circle 3 = acquaintances
Circle 4 = paid partners
Circle 5 = unfamiliar partners
• Circle 6
Online Communication
Partners
Loneliness & Social Dissatisfaction
Questionnaire for Children
(Asher, Hymel & Renshaw, 1984)
6
It’s hard for me to make friends.
Always true
True most
of the time
Sometimes Hardly ever
true
true
Not true at
all
7
I like school.
Always true
True most
of the time
Sometimes Hardly ever
true
true
Not true at
all
8
I have lots of friends.
Always true
True most
of the time
Sometimes Hardly ever
true
true
Not true at
all
9
I feel alone.
Always true
True most
of the time
Sometimes Hardly ever
true
true
Not true at
all
10
I can find a friend when I need one.
Always true
True most
of the time
Sometimes Hardly ever
true
true
Not true at
all
•
Beck’s Self-Concept
Intervention
Mean
Number of
Visits
• Home Visit support to family and
young person, nearly 7 months
M =12.8
• Cyber Safety –house rules
• Software & Equipment
• Setup support for software,
equipment or social networking
• Strategies to support use (e.g.
visual supports, prompts)
Mean Length
of Visit
M = 75 min
Examples of Goals
• Emails, Games Online, Blogs
• Skype Calls (Number of peers
connected, Circles of communication
partners connected to, support required)
Examples of Goals
• Social Networking (e.g. Facebook, Twitter,
LiveWire)
– Number of peers connected,
– Amount of support required to send 1 message,
– maintain turns/ topic & confidence to start chat,
• Functions used on Facebook
– Comments on others posts,
– adds photos, status updates, sharing links, sharing
favourites, adding favourites, looking at news feed etc).
Case study 1 - Amy
• Amy is 13 years old and lives with her mum & dad. She
loves watching TV and hanging out with friends. She’s
always asking her mum if her school friends can come
and visit but this is not possible as much as she would
like.
• Although it’s available she doesn’t use the computer or
internet at home but uses a Dynavox V at home and
school and uses a computer at school.
• Her Dynavox V has a PODD page set
• Her preferred communication mode is sign language
• She has a physical disability with Ataxia. GMFCS level II,
MACS level II and CFCS level III.
Case study 1- Amy
Case Study 2 - Peter
• Peter is 12 years old and lives with his mum & dad.
He loves his dog. He enjoys watching ‘browsing the
web’ by watching his mum bring up some of his
favourite surfing websites on the family computer.
• He has a diagnosis of CP. GMFCS level V, MACS
level V and CFCS level V.
• Seizures are uncontrolled and his skills are therefore
variable.
• Peter has complex communication needs and uses
two switch step scanning to access a Word Power
grid on grid 2.
II Case Study Peter
• He blinks his eye for yes and at times shakes his head for No
but is still learning to respond consistently for No.
• His mum wants him to write grammatically correct sentences
by email and browse the web.
• At this stage Peter’s communication device does not connect
to the Internet.
• Peter doesn’t like direct instruction techniques and often is
given 1:1 support to complete a task that he can complete
independently at other times (e.g. to say something or to
open a page on his communication device).
• Also for Peter to be able to look up his favourite web pages.
Case Study Peter - Goals
• Difficulties with compatibility between the Internet
Service Provider and Speech Generating Device.
– Settings are advertised online but not necessarily
compatible.
– Internet provider’s didn’t know about the SGD and the SGD
supplier didn’t know about the Internet provider settings
• Together with the IT consultant: Over 3 hours of
support and trouble shooting we finally got the email
set up correctly.
Case Study Peter - Intervention
Navigate to…
Switch Presses
Group 7 (top page)
Move x 6
Choose x 1
“please” row (group 7, row 4)
Move x 3
Choose x1
Special Functions button (group 7, row 4)
Move x 2
Choose x 1
Group 4 on the Special Functions page
Move x 3
Choose x1
Email inbox button (in group 4)
Block 1 on the Email inbox page
Choose x1
Move x 2
Choose x 1
Open Email button (in block 1)
Move x 2
Choose x1
Email workspace(block 2) - Reads Email
Move x 1
Choose x1
Total Time
27 switch presses!
Case Study Peter - Intervention
Programing & Email functions.
Strategies & Resources
• Devices used to access Internet
• Intervention Tool Kit
Strategies & Resources
• Software Purchased and Installed on
Participant devices
• Free downloads Installed on
Participant devices
Strategies & Resources
• Websites
Strategies & Resources
• List of Tools Developed
Examples of tools developed
• List of Tools Developed
Common Barriers
• Access to Internet account (e.g. account
blocked)
• Home computer breakdown / slowness
• Equipment not charged
• Family’s home Internet connection
• Forgot password
• Family or participant personal choices
Common Barriers
•
•
•
•
•
Difficulties scheduling appointments
Time to travel to appointments.
Participant/ Family fears around SNS’s
Programming needs
Troubleshooting complex communication
devices
Facilitators
• Support team
• Participant and Family motivation
• Participant and Family experiences of
success
• Quick resolutions and simple
presentation of solutions to technical
problems
RESULTS
COPM Scores
GAS T Scores
Circle of Communication
Partners- Before & After
Who did participants
talk to online?
Becks Self Concept
ALSDQ Mean raw score before
and after intervention
Summary
• Support and training were effective
• Shows improvement in performance,
satisfaction with that performance, and
confidence in using the Internet for a
variety of social networking purposes
• Reduction in mean loneliness, but not
statistically significant
• Self-Concept scores remained same
Summary
• Technological difficulties were significant
for this group
• Limited Literacy Skills
Key messages
• Importance of Digital inclusion and
Digital independence
• Community participation includes online
communities as well
• Importance of individualised training
and support provided at home
Enhancing social participation in
young people with complex
communication needs: Evidence
based strategies for supporting access
to online social networking
Research Team
Emma Grace (Ph.D. Candidate, Project Coordinator, Flinders University)
A/P Denise Wood (University of South Australia)
Dr. Lareen Newman (Senior Research Fellow, Southgate Institute,
Flinders University)
Dr. Tim Connell (Psychology, Lead, Disability SA)
Funded by: Channel 7 Children’s Research Foundation, SA
Publications
1.
2.
3.
Grace, E., Raghavendra, P., Newman, L., Wood, D. & Connell, T. (2014). Learning to use
the Internet and online social media: What is the effectiveness of home-based intervention
for youth with complex communication needs? Child Language Teaching and Therapy.
30(2), 141-157. doi:10.1177/0265659013518565. Special Issue The Relevance of the Digital
Age in understanding and supporting children and young people with speech, language and
communication needs
Raghavendra, P., Grace, E., Newman, L., Wood, D. & Connell, T. (2013a). “They think I’m
really cool and nice”: The impact of Internet support on the social networks and loneliness of
young people with disabilities. Telecommunication Journal of Australia. 63 (2), 22.1-22.15..
Raghavendra, P., Newman, L., Grace, E., & Wood, D. (2013b). “I could never do that
before”: Effectiveness of a tailored Internet support intervention to increase the social
participation of youth with disabilities. Child: Care, Health & Development, 39 (4) 552-561.
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