Child’s World- Next Steps, International Conference Aberystwyth University

1. Can I learn to Cycle? Opportunities for all children to achieve cycling- voices from research and practice Child’s World- Next Steps, International Conference Aberystwyth University Gabriela Todd and Dawn Pickering 26th June 2014

2. Objectives • Context of practice and research • Cycling, Race running • Children’s voices • Future

3. United Nations Convention on the Rights of the Child • 23 Children with disabilities • 28 Right to Education • 29 Goals of Education • 31 Leisure play and culture

4. Background • Physiotherapy clinical practice with Cerebral Palsy (CP) Lack of participation opportunities for CP Fowler et al, 2009; Fauconnier et al, 2009; McConachie et al, 2006; Mihaylovat et al 2004 Choice of activities limited- requires some adaptation and support

5. Cerebral Palsy- consensus definition Rosenbaum et al 2007 ‘….describes a group of permanent disorders of the development of movement and posture causing activity limitations that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication and behaviour, by epilepsy and by secondary musculoskeletal problems.’

6. Palisano et al, 1997; Reid et al, 2011

7. Adapted cycling research 2009-2012(Nancie Finnie Charitable Trust ) Muscle strength and length Participation opportunities 2 groups: Cycling (17), non cycling (18) Diary of physical activities Interview adapting Mosaic methods • Diane’s drawing aged 10

8. Cycle route

9. What did physiotherapists understand participation meant? Pickering et al, 2012 Medical model

10. Non cycling group analysis- physical activities + cycling Pickering et al in press 2014 Wheel of Participation Social model Voice

11. Aspirations “I did cycling and it was wicked!” Peter’s Mum: “Gabriela put him on the Tom Cat trike, strapped his feet in and it was the first time ever he pedalled and he couldn’t stop it. Everybody got so emotional, fantastic. It just shows if you’ve got the tools for the job, the right equipment, you can do it…This year we cycled from Bristol towards Windsor because we could hire the special trike….I think completely independently he cycled not far off 40 miles…” Peter aged 7 years Diplegia, High tone, GMFCS I

12. Diane’sDiary entry-cycling skills

13. Andrew’s cycling skills Andrew was able to describe his cycling experiences: ‘…when I pedal it’s like I’m there and I am enjoying it…we cycle in the park and I go down the slope…and then I change it…. you know… I put into 3 (gears) and it makes me fast…’ Dad describes his progress ‘…he loves biking, obviously it gives him that independence…they’ve taken the footplates away..’ Andrew progressed to going cycling with a carer (Bethan) Dad: ‘…Bethan actually cycles with Andrew and they now do four circuits rather than the one or two he did before….’ Recumbent Trike steered from side Andrew 17 years and GMFCS level II with diplegia, athetosis and autism

14. Children unable to self report Julia, 14 years, GMFCS IV Rachel, 8 years, GMFCS IV “You can just see the joy in her face when she’s on her bike yeah!....Um, I mean if it’s straight, you know, you can virtually sort of let go and she’ll just go by herself until she starts veering off course……she definitely enjoys it…” “Throughout the cycling sessions I feel that Rachel’s confidence has improved. She is so happy when she is cycling and it gives her the freedom and independence she needs…..”

15. Fatigue

16. Cycling at school • Becky (GMFCS III) attended mainstream school • Diary entry, written by mum: “…It’s bike day at school. All of the children are taking their bikes…Apparently she had another good session, cycling enthusiastically and proudly on her bike ( not sure how long-should think it was a good hour)….”

17. May’s diary entry May is GMFCS II and has underdeveloped organs, dystonia and hemiplegia due to prematurity and having a stroke

18. May’s Cycling Ambitions May ‘s own Diary entry (aged 10 years) Today I had a 20 mins bike ride with my sister and brother to RK secondary school car park there are loads of bends, curbs, bays and car spaces. I have come on really well considering me and my family all thought I wouldn’t be able to achieve such a brilliant opertinity, we also thought I am going to be doing a bike prefishinsiy test after easter so we have been practising weving in and out and signalling left and right the right is really easy for me but the left is what I find tricky. and I am also learning that I have to ride on the left on the road. May Interview: Int:… So assuming you pass your cycling proficiency test, what do you hope to do with your cycling? M:..to get better and better at it. Int: Where would you like to go with your bike? M: H Forest Int: Have you been there already? M: Yeah but I had to go on a ‘stupid tandem’ because my teacher kind of forced me…another Dad pedalled.. Mum: …It was sort of an ice cream basket on the back.. Int: So you didn’t do any pedalling at all? M: No which was really, really, really disappointing…cos all my other friends were like riding a bike and I was lonely….

19. Change in behaviour • 11 of the 18 children started cycling during or after the study was completed

20. Implications for practice Quality of life - The children who participated in adapted cycling told us they enjoyed this experience and it improved their sense of well being, independence, achievement and confidence. Some children chose other activities to participate in, fatigue was a factor in this. Policy makers should consider offering adapted cycle hire within a 50 mile radius.

21. Follow on from research • This research has led to the development of some after school cycling clubs and the exploration of a competitive sport: • Race running bikes

22. Imogen on her racerunner Children were curious 5 pilot sessions in athletic stadium Great excitement Physiotherapy Student volunteers keen to help Requested Funding

23. Racerunning • Speed- without worrying about falling • Space is open- freedom to move - • Sociable- being with others is fun • Spring-loaded - easy to turn or to keep straight • Sporty- fun to race my friends • Stand- I can just stand still and stretch, chat or rest!

24. What Gareth did • Beginning • OUTCOME Parents want their children to have a go invite an expert speaker Funding for 4 after school sessions Assessment arranged at cycle charity Cycle together session follow-up

25. Imogen on her bike

26. Kissing gates were created to keep animals in, not children out Radar key

27. Making leisure activities accessible for all • Accessible space • Opportunities • Personal adjustments • Adult services cannot simply be made “smaller” • Cost of bespoke anything is high- seek funding

28. 6 week after school cycling club • Help children to be physically active for one hour after school (well-being) • Work on pre-cycling skills • Progress children or let them try out different cycles and chose what they like- if safe • Help children focus as routine builds up • Reduce the burden for parents to go out again after school when they are tired

29. Department of Education June 2013 • Evidence on physical education and sport in schools: • “The barriers include: inaccessible facilities and equipment; staff without adequate training; and inadequate, non-compliant or otherwise inaccessible programs and curricula (Auxter, et al, 2010; Rimmer, 2008; Rimmer and Rowland, 2007; Stanish, 2010)”

30. Imogen’s digital story • Consent obtained 28th April 2014: • Imogen now aged 8 years reported that she “enjoys horse riding- especially when I’m trotting, bike riding and Brownies”

31. Children have rights too The sky is the limit Whole family aspirations, constraints and challenges Three ‘E’s we need to flourish How do those words make me feel? Medical prognosis “Yes, we can!” Hours in the day Treatments Wheelchairs Expectations Equality Empathy

33. Questions ? Dawn Pickering, Senior Lecturer, Cardiff University’s School of Healthcare Sciences; pickeringdm@cf.ac.uk Twitter: @DawnMPickering Gabriela Todd, Community Children’s Physiotherapist, NHS; and BBC Children in Need funded @ Cardiff Pedal Power gabriela.todd@yahoo.co.uk; physio@cardiffpedalpower.org