Development of an instrument to measure Participation in young people with cerebral palsy

1
Development of an instrument to measure
Participation in young people with cerebral palsy

• Catherine Tuffrey
• Belinda Bateman
• Allan Colver
• RCPCH Spring Meeting 2009

2
Aim of research

• Design and test instrument to measure
  Participation in adolescents with cerebral palsy
• Participation involvement in life situations
• International Classification of Function,
  Disability and Health (ICF), 2001, WHO

3
Why?

• Participation is a key outcome for all
• There are no instruments measuring all areas of
  Participation designed for adolescents

4
Developing an instrument

• Views of adolescents with cerebral palsy

• Existing
• instruments

DRAFT INSTRUMENT
Adolescent development
Expert review of items
5
Research Process

• Qualitative
• interviews

Expert panel review of possible items
Focus groups
Field testing of draft instrument
6
Interviews

• 17 interviewees 12 with CP and 5 able-bodied,
  aged 14-21
• Different schools (special and mainstream), rural
  and urban locations, both genders, range of
  severity of CP and associated problems

7
ICF Activity and Participation domains

• Learning and applying knowledge
• General tasks and demands
• Communication
• Mobility
• Self care
• Domestic life
• Interpersonal interactions and relationships
• Major life areas
• Community, social and civic life

8
Using qualitative data to inform development of
questionnaire items

• Items in ICF important to adolescents
• Aspects of Participation
• Areas not included in ICF
• Universality of aspirations in Participation

9
Research Process

• Qualitative
• interviews

Expert panel review of possible items
Focus groups
Field testing of draft instrument
10
Focus groups

• 3 groups with a total of 8 young people
• Discussed items
• Discussed possible qualifiers
• Discussed possible wordings

11
Research Process

• Qualitative
• interviews

Expert panel review of possible items
Focus groups
Field testing of draft instrument
12
Expert content review

• 17 experts
• Content review questionnaire for 88 items
• Item ratings for relevance and clarity

13
Research Process
Field testing of draft instrument

• Qualitative
• interviews

Expert panel review of possible items
Focus groups
14
Questionnaire of Young Peoples Participation
(QYPP)

• 92 items
• Self report and Proxy-report versions
• 7 domains
• Home life
• Getting on with other people
• Education and school or college life
• Work and finances
• Community and political life
• Recreation and leisure
• Planning for the future

15

• 2.4 I use on-line communication (e.g. email, MSN
  messaging, Facebook)
• In general I do this
• Twice every day About once Most days but
  About once About 2-3 times About
  once a Never
• or more every day not every day a
  week each month month or less
• ? ? ? ? ? ? ?
• 2.5 I talk with neighbours and other people who
  live near me
• In general I do this
• Every day Most days but About once a
  weeK About 2-3 times About once a Never
  not every day each month
  month or less
• ? ? ? ? ? ?

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The future

• Field testing
• Validity
• Reliability

17
Acknowledgements

• Supervisors
• Prof Allan Colver and Dr Belinda Bateman
• Young people and parents who have taken part
• Expert panel
• A Baddeley, A Chamberlain, R Forsyth, V Harpin, T
  Herron, S Jarvis,
• C Jessen, A Jordan, E McColl, H McConachie, J
  McDonagh, C Morris,
• K Parkinson, J Parkes, A Pearce, L Pennington.