Wheelchair sport: zippy turns, going fast and playing together in wheelchairs

Wheelchair sport: zippy turns, going fast
   and playing together in wheelchairs

                                                            Prof Bernie Carter,
   Please note that images
   have been removed from                      Professor of Children’s Nursing,
   this public version of the               University of Central Lancashire &
   ppt as per consent/ethics         Director, Children’s Nursing Research Unit
                                    Alder Hey Children’s NHS Foundation Trust

May 2014              An Ordinary Life Conference

Background to the study

Christine
Anderson and
I have been
working
together on
projects for
more than
four years.

                 (All images used with permission)

   I worked with colleagues* to
     research a wheelchair sports
     club which Christine had set
     up.
    This presentation focuses on
     the children’s, siblings’ and
     families’ perspectives
*Janette Grey, Elizabeth McWilliams, Zoe Clair, Karen Blake, Rachel Byatt

The Cheetahs Wheelchair Sports Club

The Cheetahs: core aim & context
   Aims to help children with        Jessica
    disabilities to play with each
    other and their able bodied
    friends, brothers and sisters.
   Meets weekly
   All of the children participate    Christopher
    in sport from a wheelchair.

The Cheetahs Research Study

Who did the study?
   The team consisted of:
       2 students working on a
        summer internship
       1Prof. of Children’s Nursing
       1 SL in Physiotherapy
       2 SL Children’s Nurses
   Ethics approval gained
   Children assented to be
    part of the study, adults
    consented.

Aims of the study
To explore:
 children’s, parents’/carers’, siblings’ and stakeholders’

  experiences and perceptions of ‘The Cheetahs’; &
 what benefits (if any) occur as a result of bringing children

  with disabilities and children without disability together.

Methodology and Methods

Methodology and methods
   We used an appreciative,
    qualitative methodology and
    mixed research methods:
     Participant observation
     Photographs

     Focus groups

     Interviews

     Children’s activities (drawings,
      stories, lists)
     Children’s survey

(See: Carter, 2006)

Photographs
   Photographs were
    taken by:
     the children; and

     a professional
      photographer
    to support the
    observational, text-
    based and other visual
    data.

Participant observation
                     Observed (pre, during
                      and post) 10+ sessions
                     We all spent time in
                      the wheelchairs and
                      joined in sporting
                      activities
                     We also engaged in
                      informal interviews and
                      made field notes of
                      the key ideas.

Focus groups and interviews
                      Two focus groups
                       were undertaken
                       with the children's
                       parents and families
                       to gain an
                       understanding of
                       their perspectives.

                      Interviews with key
                       informants were
                       undertaken either
                       face-to-face or by
                       telephone.

Children’s activity packs
   Each pack had three
    activities for the children
    to take part in:
      writing a list of 3
       brilliant things you can
       do in a wheelchair,
      writing a story about a
       child & a wheelchair,
      drawing a picture with
       a wheelchair in it.

Children’s survey
   The children contributed their
    individual ideas as well as sharing
    these with their peers.
   This approach meant a consensus
    was developed.
   The survey was interactive and
    designed to be engaging and yet
    provoke the children to think
    through their answers.

Data analysis
    All qualitative text-based
     and visual data were
     analysed by using thematic
     analysis.
    Descriptive statistics were
     used for the quantitative
     data from the survey.

    (See: Attride-Stirling, 2001)

Who took part?
   63 participants in total
   25 children actively engaged of whom:
       19 children participated in the survey
       10 children participated in the drawing, story-telling
        and listing activities
   12 children peripherally involved
   14 stakeholders were interviewed
   10 parents (9 mothers; 1 father) in focus groups
    2 siblings took part in the focus groups.

Themes: unifying & main

 Invisibility     Ambivalence
     and               and         Fun and     Thrills and
divisibility of   attraction of   fellowship     skills
  disability       'the chair'

Realising potential – a place of opportunity

   Cheetahs was an “important and
    unusual place”
   Families often felt marginalised as
    “the options out there for a
    disabled child to participate in
    sport are limited. At the moment
    there is this club and swimming.
    Not much of a choice if you
    don’t want your child to feel left
    out”.
   Sport is “important to us as a
    family”
(See: Clark & Macarthur, 2008; Michelsen et al., 2009)

   Parents felt children were
         gaining “confidence” &
         “coming out of their shell
         ... and not being as shy”
         and changing from “I can’t
         do that” to “I’m really,
         really good at sport”
        Children agreed, e.g.,
        “I’m good at going fast
         and doing zippy turns and
         throwing the ball, I didn’t
         know I could go faster
         than [able-bodied friend]
         before I came to
         Cheetahs”
(See: Tamm & Prellwitz, 2001; Lyons et al., 2009)

Invisibility of disability
                  New visitors often wanted to know
                   “which ones are disabled”
                  Children loved the fact that the club
                   was for “able-bodieds and disabled
                   bodies” & that “we’re all the same
                   here”
                  “as far as we can see, actually, none
                   of the kids see anybody as more
                   disabled or not disabled, they’re just
                   kids playing sport, in a chair, that’s
                   really fast and [can do] fancy tricks
                   once they’ve learnt how to”
                  (See: Scholl et al., 2006; Ison et al., 2010; Weiserbs & Gottlieb,
                  1995; Weiserbs & Gottlieb, 2000).

Ambivalence & attractiveness of chairs

      Sometimes resistance to using
       chairs (children & visitors) but
       ‘conversions’ were moral
       moments.
      Children’s stories were
       temporal and some ‘wish for
       a cure’ stories
      Also positive feelings
       “wheelchairs make you “There was a girl called cassie who had
       stronger”                     been disabled since she was born. Then one
                                               day she got medication that made her better
                                               and she herd good news. That good news
                                               was that she could walk!!! Cassie practised
                                               every day then suddenly she walked!!!”

(See: Sapey et al., 2005; Goodwin & Watkinson 2000)

Fun and fellowship
       I like “playing together”                    “I like the cakes”!
       It’s “funny playing the same                 I like “making friends” and
        game together in                              “trying different things”
        wheelchairs… it’s good
        funny”
       Siblings said “normally
        everything related to her
        disability is bad, like the
        way we always have to go
        to the hospital but here, at
        ‘Cheetahs’, her disability is
        fun and a happy thing”
(See: Kristen et al., 2002; Spencer-Cavaliere &
Watkinson, 2010; Tamm & Skär, 2000)

Thrills and skills: being an expert
   Children with disabilities were
    often in the position of being the
    expert, able to teach wheelchair
    skills to their able-bodied peers
     “One day there was a boy named fred.
     fred could not do 360’ spins he tryd
     and tryd and he could not dO IT but
     one sunny Friday his friend like
     showed him how to do 360’ spins. IT
     took him a while to learnd how to do
     360’ spins but then he was better than
     Anybody in cheeter’s Club”

(See: Kristen et al., 2002; Murphy & Carbone, 2008;
Goodwin & Watkinson, 2000)

Thrills and skills: getting fitter
   Sometimes the sessions were
    tiring but the children felt they
    were getting fitter.
   “I feel a bit fitter as my arms
    don't ache as much”… “my
    arms are getting stronger”…
    “I can move about more in a
    wheelchair”… “I feel fitter”…
    “I can play longer”…

    (See: Goodwin & Watkinson, 2000)

Conclusions
   Children had a place and space where they could
    make friends, play together and enjoy sport
   Able-bodied children and children with disabilities
    reframed their attitudes to wheelchairs
   Children understood more about ability, disability
    and wheelchairs
   Children were able to sustain longer engagement in
    wheelchair sports
   Children had fun and were able to pursue sport in a
    very unique place

References
 Attride-Stirling,J., 2001. Thematic networks: an analytic tool for qualitative research. Qualitative Research 1 (3), 385-405.
 Bult,M.K., Verschuren,O., Jongmans,M.J., Lindeman,E., Ketelaar,M., 2011. What influences participation in leisure activities of children and youth with
  physical disabilities? A systematic review. Research in Developmental Disabilities 32 , 1521-1529.
 Carter,B., 2006. 'One expertise among many'-- working appreciatively to make miracles instead of finding problems: Using appreciative inquiry as
  a way of reframing research. Journal of Research in Nursing 11 (1), 48-63.
 Clark,P., Macarthur,J., 2008. Children with physical disability: gaps in service provision, problems joining in. Journal of Paediatrics and Child Health
  44 (7-8), 455-458.
 Field,S.J., Oates,R.K., 2001. Sport and recreation activities and opportunities for children with spina bifida and cystic fibrosis. Journal of Science &
  Medicine in Sport 4 (1), 71-76.
 Goodwin,D.L., Watkinson,E.J., 2000. Inclusive physical education from the perspective of students with physical disabilities. Adapted Physical Activity
  Quarterly 17 (2), 144-160.
 Kristen,L., Patriksson,G., Fridlund,B., 2002. Conceptions of children and adolescents with physical disabilities about their participation a sports
  programme. European Physical Education Review 8 (2), 139-156.
 Lansdown,G., 2009. See Me,Hear Me. A guide to using the UN Convention on the Rights of Persons with Disabilities to promote the rights of children.
  In: Save the Children, London, pp. 1-171.
 Longoria,L., Marini,I., 2006. Perceptions of Children's Attitudes towards Peers with a Severe Physical Disability. Journal of Rehabilitation 72 (3), 19-
  25.
 Lyons,S., Corneille,D., Coker,P., Ellis,C., 2009. A Miracle in the Outfield: The Benefits of Participation in Organized Baseball Leagues for Children
  with Mental and Physical Disabilities. Therapeutic Recreation Journal 43 (3), 41-48.
 Martin,J.J., Choi,Y.S., 2009. Parents' physical activity-related perceptions of their children with disabilities. Disability and Health Journal 2 (1), 9-14.
 Michelsen,S.I., Flachs,E.M., Uldall,P., Eriksen,E.L., McManus,V., Parkes,J., Parkinson,K.N., Thyen,U., Arnaud,C., Beckung,E., Dickinson,H.O., Fauconnier,J.,
  Marcelli,M., Colver,A., 2009. Frequency of participation of 8-12-year-old children with cerebral palsy: A multi-centre cross-sectional European
  study. European Journal of Paediatric Neurology 13 (2), 165-177.
 Murphy,N.A., Carbone,P.S., 2008. Promoting the participation of children with disabilities in sports, recreation, and physical activities. Pediatrics 121
  (5), 1057-1061.
 Orlin,M.N., Palisano,R.J., Chiarello,L.A., Kang,L.J., Polansky,M., Almasri,N., Maggs,J., 2010. Participation in Home, Extracurricular, and Community
  Activities among Children and Young People with Cerebral Palsy. Developmental Medicine & Child Neurology 52 (2), 160-166.

 Pinter,S., Filipcic,T., Solar,A., Smrdu,M., 2005. Integrating Children With Physical Impairments Into Sports Activities: A "Golden Sun" for All Children?
  Journal of the Philosophy of Sport 32 (2), 147.
 Sapey,B., Stewart,J., Donaldson,G., 2005. Increases in wheelchair use and perceptions of disablement. Disability & Society 20 (5), 489-505.
 Sawatzky,B., Rushton,P.W., Denison,I., McDonald,R., 2012. Wheelchair skills training programme for children: A pilot study
 Wheelchair skills training programme for children: A pilot study. AUSTRALIAN OCCUPATIONAL THERAPY JOURNAL 59 (1), 2.
 Schleien,S.J., Miller,K.D., 2010. Diffusion of innovation: A roadmap for inclusive community recreation services. Research and Practice for Persons with
  Severe Disabilities 35 (3-4), 93-101.
 Scholl,K.G., Dieser,R.B., Davison,A., 2005a. Together We Play: An Ecological Approach to Inclusive Recreation. Therapeutic Recreation Journal 39
  (4), 299-311.
 Scholl,K.G., Smith,J.G., Davison,A., 2005b. Agency Readiness to Provide Inclusive Recreation and After-School Services for Children With Disabilities.
  Therapeutic Recreation Journal 39 (1), 47-62.
 Scholl,K.G., Glanz,A., Davison,A., 2006. Importance-Performance Analysis of Supportive Recreation Inclusion Services: Community Agency
  Perspective. Journal of Park and Recreation Administration; Vol 24, No 2 (2006).
 Smith,L.A., Williams,J.M., 2001. Children's understanding of the physical, cognitive and social consequences of impairments. Child: Care, Health and
  Development 27 (6), 603-617.
 Spencer-Cavaliere,N., Watkinson,E.J., 2010. Inclusion Understood From the Perspectives of Children With Disability. Adapted Physical Activity
  Quarterly 27 (4), 275-293.
 Tamm,M., Prellwitz,M., 2001. 'If I had a friend in a wheelchair': children's thoughts on disabilities. Child: Care, Health & Development 27 (3), 223.
 Tamm,M., Skär,L., 2000. How I play: Roles and relations in the play situations of children with restricted mobility. SCAND J OCCUP THER 7 (4), 174.
 The Children's Society, 2011. 4 in every 10 Disabled children living in poverty. In: The Children's Society, London, pp. 1-20.
 United Nations, 2006. Convention on the Rights of Persons with Disabilities. In.
 United Nations Children's Fund (UNICEF), 2007. Promoting the Rights of Children with Disabilities. Innocenti Digest No. 13. In: Florence, pp. 1-80.
 Weiserbs,B., Gottlieb,J., 2000. The Effect of Perceived Duration of Physical Disability on Attitudes of School Children Toward Friendship and
  Helping. JOURNAL OF PSYCHOLOGY -WORCESTER MASSACHUSETTS- 134 , 343-345.
 Weiserbs,B., Gottlieb,J., 1995. The perception of risk over time as a factor influencing attitudes toward children with physical disabilities. Journal of
  Psychology 129 , 689-699.