The development of a new instrument to measure participation of adolescents with cerebral palsy

Abstract

The World Health Organisation published the International Classification of Functioning, Disability and Health in 2001. It defines Participation as ‘involvement in life situations’. Instruments to measure Participation have been developed for children and adults, but none specifically for adolescents. Adolescence is a life stage with distinct patterns of Participation, and previous research has demonstrated that adolescents with disabilities have poorer Participation than the non-disabled population. Cerebral palsy (CP) is a significant cause of disability in adolescents, with affected individuals experiencing a range of different impairments of varying severity. CP was chosen as the exemplar condition for this study. The aim of this study was to develop a measure of Participation for adolescents with CP. Semi-structured interviews with 17 adolescents, 12 with CP and 5 without disability, were used to elicit views of Participation to inform item generation. Focus groups with 8 of the adolescents allowed respondent validation and feedback on possible questionnaire items. The pool of 88 proposed items was revised following review by 17 experts, resulting in 92 items with a content validity index of 93%. Cognitive interviews were carried out with adolescents and carers. Field-testing with 107 young people with CP was used to examine reliability, construct validity and to enable item reduction. For 38 of these adolescents, a proxy report was obtained because the young person did not have sufficient cognitive ability to self-report. Known-groups validity was demonstrated using correlation with impairment severity. Test-retest reliability was satisfactory for all domains, whilst internal consistency varied between domains. The instrument was shortened to 45 items. This is the first instrument developed to measure Participation for adolescents with disability. Use of the instrument in research and clinical work will enable its properties to be better understood in different settings.