Factors impacting positive and negative participation of young people with cerebral palsy: a Delphi study of consumers and health professionals

Abstract

Purpose To identify specific factors influencing the participation experiences of young people with cerebral palsy (CP) aged 15 to 26 years. Materials and methods A three-round Delphi survey study design was used. Consumers (young people with CP and caregivers) and health professionals were asked to generate and then rate items influencing positive and negative participation experiences. Qualitative content analysis and descriptive statistics were used to classify items across the family of Participation-Related Constructs (fPRC) framework. Results Sixty-eight participants completed Round I (25 consumers, 43 health professionals). Round II resulted in a consensus for all but two items, with Round III not required. The fPRC construct with the most items rated as extremely important for positive participation experiences was Environment–Availability, and for negative participation, experiences were Environment-Acceptability for both adolescents and young adults. Conclusions A consensus was reached on the most important items influencing the positive and negative participation experiences of young people with CP. These items should be prioritised when developing support services and allocating funding to improve the participation experiences of young people with CP.