Lareen Newman 1 Pammi Raghavendra 2 Claire Hutchinson 2

Emma Grace 2 Denise Wood 3

1.Southgate Institute for Health Society & Equity, Flinders University2.Disability & Community Inclusion Unit, Flinders University

3.Learning & Teaching Services, Central Queensland University

Supporting online social networkingto improve the health and wellbeing

of rural youth with disabilities

For: National Population Health Congress, Hobart, Sept 2015 #pophlth2015

Twitter: @LareenNewman #disability #digitaldivide #kids

The Research TeamA/Prof Pammi Raghavendra

Principal Investigator, Flinders UniversityProf Denise Wood

Chief Investigator, Central Queensland UniversityDr Lareen Newman

Chief Investigator, Flinders UniversityMs Emma Grace

Project Coordinator & PhD candidate, Flinders UniversityMs Claire Hutchinson

Research Assistant, Flinders University

Funders: National Disability Research & Development Grantand SA Department of Communities & Social Inclusion

Twitter: @PammiRag @DeniseWood @Emmaslink @Claire_Flinders @Flinders

Outline • Social Determinants of Health

> Online social connection

• The disability digital gradient

• Young people, ICT use and health

• Our Project with 10-21 year olds which taught online social networking for social participation

• Health & wellbeing findings

• Lessons for the Health Sector

Photo credits: diygenius.com, vpmsolutionsguide.com

What are social determinants?

Social determinants of health (SDH) -the conditions in which we live and work:•Employment, Income, Education•Housing, Transport, etc•Social Connection and Networks

Newman L, Biedrzycki K, Baum F (2010), ‘Digital technology access and use among socially and economically disadvantaged groups in South Australia’, Journal of Community Informatics [online], 6(2).

Newman L, Baum F, Biedrzycki K (2012), ‘Digital technology use among disadvantaged Australians: implications for equitable consumer participation in digitally-mediated communication and information exchange with health services, Australian Health Review, 36(2):125–129.

ICTs - computers, Internet, mobile phones… 21st Century Determinants as they provide or prevent access to eg online social networks, online education, e-health

“Everyone is online these days” (are they really?)

Flickr/photo credits – pink Frerieke; Sean.drelinger –househunting, white african; cindi matthews; @superamit; computerdogs.tumblr.com; emerging-technology-talks.blog

The Disability Digital Gradient> 85% of 15-34 year old Australians with a disability

accessed the internet “at least once in prior 12 months” ABS 2009 & 2012

Young people, ICT use and healthNegatives- Reduced screen time during adolescence may reduce obesity (Boone et al 2007)

- Small but consistent link: sedentary screen time & mental health (Biddle/Asare 2011)

- Screen time content – antisocial behaviour (Dept Health, Australia 2014)

1) Boone et al 2007. Screen time & physical activity during adolescence, Int J Beh Nut & Phys Act, 4:26 (2) Biddle & Asare 2011. Physical activity & mental health in children and adolescents: a review of reviews, Br J Sports Med, 090185 (3) Dept Health 2014. Australia’s physical activity and sedentary behaviour guidelines 13-17 year olds. Australian Government. (4) Valkenburg P & Peter J 2009. Social consequences of the internet for adolescents: a decade of research. Current Dir Psych Sc 18(1):1-5 .(5) Wang L et al 2012.The effect of Internet use on adolescents’ lifestyles. Computers in Hum Beh 28(6): 2007-13. (6) Khan et al 2014. Actual friends matter: an internet skills perspective on teens’ informal academic collaboration on Facebook. Computers & Education, doi 10.1016/j.compedu.2014.08.001.

Positives for health- Improved social connection with existing friends (Valkenburg et al 2009)

-Facebook as support forum for academic work (Khan et al 2014).

-Limited research on youth with disabilities > our metro project Judgements - “Productive” use = school homework, NOT “entertainment” `

Limited offline social & friendship networks among youth with disabilities> Can social media training increase social networks for them?

Dept of Health 2014: Australia’s physical activity and sedentary behaviour guidelines 13-17 year olds. Australian Government.Houghton S et al (2015). Virtually impossible: limiting Australian children and adolescents’ daily screen based media use. BMC Public Health, 15(5).

13-17 year olds

• Max 2 hrs /day of “electronic media for entertainment (e.g. television, seated electronic games and computer use)”

• “Swap social media for social activity”

• NOT being online gives you benefits, more physical activity

Offline social benefits – eg fun with friends Offline emotional benefits – eg better self esteem & confidence

• WA researchers: 2hrs “impossible”, “needs reappraisal”

Our intervention project• Goals to commence/extend online social networking

for social participation

• One-to-one training by 2 research assistants (teacher/psychology); could need many steps

• A set of measures on Goal Achievement and Performance

GOALS: eg ‘By the end of the project, the participant will chat online with family and friends”…Will share items of interest (e.g. YouTube/websites) on her blog’’.…Will share a photo taken on his iPad via the Facebook App’’.

Interviews with the 17 and their parents/caregivers > results in this presentation

Our intervention project

• December 2013-October 2014

• Regional/Rural SA – 650km and 435km from Adelaide

• 17 young people: 7 girls,10 boys age 10-21, av 16;3

• Intellectual disabilities, autism spectrum disorders, physical disabilities;

8/17 also had communication disabilities

Each got average 13 home visits, 66 mins per visitIncluded cybersafety training, software, equipment, techn trouble-shootingGoal setting, personalised supports (eg prompt cards – examples below)

Findings - Increased social connection> Communication stronger & more frequent (family/friends) Improved literacy, speech & confidence online & offline

Twitter: @LareenNewman @Flinders #disability #digitalequity

I’ve used that [Facebook] to connect with people… I was friends with them and didn’t really talk to them much outside of school or sport, or whatever, and found them on Facebook or they found me and then we got chatting on the instant messaging on that and it’s helped me connect with more friends. (Participant #14)

It’s certainly breaking down some of the barriers… making [him] feel that [he isn’t] any less of a person [for having a disability]… [he] can communicate with people, where it was a barrier before. (Aunt of Participant #12)

Findings – Feeling happy, Being like other kidsI liked putting my pictures up for people to see…..I get to show others how good my drawing is. (Participant #11)

[The project] was fun… I enjoyed it. (Participant #11)

Twitter: @PammiRag @Emmaslink #disability #digitalequity

The best part of it was achieving the goals I wanted to and learning new things. (Participant #14)

Just to get confidence and do something that’s sort of age appropriate for a teenager. Other kids his age are doing that [being on social media] (Parent of Participant #1)

Findings – Rural-specific benefits We don’t have the opportunity to access things in the metro area and we’re geographically isolated. A program like this has been really invaluable… fantastic… certainly broadened [name’s] horizons (Parent of Participant #5)

We’re the only ones here, everyone else is in Adelaide. So he can connect with them now… next week we’ll be [in Adelaide] for hospital so he’ll be able to talk to his dad and his brother on Skype at the end of the day and tell them what we’ve been up to, which is good. (Parent of Participant #1)

OUR METRO STUDY: (1) Raghavendra P, Wood D, Newman L et al (2012), ‘Why aren’t you on Facebook? Patterns and experiences of using the Internet among young people with physical disabilities’, Technology & Disability, 24, 149-162.

Barriers to getting onlineDisadvantaged backgrounds - most lived in low SES postcodes, half the dads had Yr 11 education or less

Limited basic literacy skills – benefits of providing software for independent reading and writing

* Lathouwers, L, de Moor, J. and R. Didden (2009) 'Access to and use of internet by adolescents who have a physical disability', Research in Developmental Disabilities 30: 702-711.Photo credits: www.ljeltd.com

Parents not all tech-savvy or confident online themselves

Parents often underestimated child’s ability to learn social media; often unaware of wellbeing benefits

Parental gatekeeping due to cybersafety fears (more concerned than parents of non-disabled peers: Lathouwers*)

Many parents unaware of assistive technologies, where to get them, how to connect to their computerLack of people to connect with; slow rural download speeds

Lessons for health – greater needDon’t assume all young people are online, or can get online without intensive outside support

Twitter: #digitaldivide @Lareen Newman @PammiRag @Emmaslink

1. Promoting ‘limited screen time’ – parents may misinterpret generalised messages for different needs groups – some require longer screen time.

2. Consider greater social health benefits for some youth in being online, especially where their offline networks are limited

3. Organisations can support young people with disabilities AND their parents/families to acquire technology and training for online benefits. NDIS funds > reconsider where “entertainment” and “health” intersect

Email: lareen.newman@flinders.edu.au5 Papers from this and our metro project:

1. Raghavendra P, Newman L, Grace E, Wood D (2015), Enhancing social participation in young people with communication disabilities living in rural Australia:outcomes of a home-based intervention for using social media’, Disability & Rehabilitation. DOI:10.3109/09638288.2015.10525782. 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. http://hdl.handle.net/2328/35482 3. Raghavendra P, Newman L, Grace E, Wood D (2013), ‘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. DOI: 10.1111/cch.12048 4. Raghavendra P, Grace E, Newman L, Wood D, Connell T (2013), ‘They think I’m really cool and nice’: The impact of Internet support on the social networks and loneliness of young people with disabilities', Telecommunications Journal of Australia, 63(2): 22.1-22.15. http://hdl.handle.net/2328/350325. Raghavendra P, Wood D, Newman L, Lawry J, Sellwood D (2012), ‘Why aren’t you on Facebook? Patterns and experiences of using the internet among young people with physical disabilities’, Technology & Disability, 24: 149-162. http://hdl.handle.net/2328/27072

Images from www.news.ruralinfo.net; and www.usodep.blogs.govdelivery.com