Pammi Raghavendra. Ph.D.

1. 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

2. Outline • Importance of social networks for adolescents with and without disabilities; • Internet and young people • Research study: • Aim • Method • Tools used • Intervention strategies • Outcomes • Barriers & Facilitators

3. Adolescence and Social Participation Important for psychological health, well-being, 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).

4. 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)

5. 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)

6. 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)

7. 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).

8. 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)

9. 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

10. Participants with CCN • 5 Participants • Mean age: 13;3 • Gender: 3 Males, 2 Females

11. Participants with CCN

12. 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)

13. Canadian Occupational Performance Measure (COPM)

14. Canadian Occupational Performance Measure (COPM)

15. 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

16. Circle 6 Online Communication Partners

18. Loneliness & Social Dissatisfaction Questionnaire for Children (Asher, Hymel & Renshaw, 1984)

19. Beck’s Self-Concept

20. Intervention • Cyber Safety –house rules • Home Visit support to family and young person, nearly 7 months • Software & Equipment • Setup support for software, equipment or social networking • Strategies to support use (e.g. visual supports, prompts)

21. Examples of Goals • Emails, Games Online, Blogs • Skype Calls (Number of peers connected, Circles of communication partners connected to, support required)

22. 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).

23. 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.

24. Case study 1- Amy

25. 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.

26. 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.

27. 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.

28. Case Study Peter - Intervention

29. Case Study Peter - Intervention Programing & Email functions.

30. Strategies & Resources • Devices used to access Internet • Intervention Tool Kit

31. Strategies & Resources Software Purchased and Installed on Participant devices Free downloads Installed on Participant devices

32. Strategies & Resources Websites

33. Strategies & Resources List of Tools Developed

34. Examples of tools developed

35. List of Tools Developed

36. 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

37. Common Barriers • Difficulties scheduling appointments • Time to travel to appointments. • Participant/ Family fears around SNS’s • Programming needs • Troubleshooting complex communication devices

38. Facilitators Support team Participant and Family motivation Participant and Family experiences of success Quick resolutions and simple presentation of solutions to technical problems

39. RESULTS

40. COPM Scores

41. GAS T Scores

42. Circle of Communication Partners- Before & After

43. Who did participants talk to online?

44. Becks Self Concept

45. ALSDQ Mean raw score before and after intervention

46. 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

47. Summary Technological difficulties were significant for this group Limited Literacy Skills

48. 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

49. 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

50. Publications • 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.