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.

IMPLICATIONS FOR REHABILITATION

• This study is reporting consumer and professional consensus on the factors promoting positive and negative participation for young people with cerebral palsy.

• Ensuring availability of appropriate activities and services is extremely important for enabling positive participation experiences.

• Promoting acceptable attitudes of others is extremely important for alleviating negative participation experiences.

Keywords:

• Participation
• cerebral palsy
• Delphi
• young people
• adolescents
• young adults

Acknowledgements

The authors wish to thank all consumers and health professionals who participated in this study and the Queensland Cerebral Palsy Register for recruitment support.

Ethics approval

Ethical approval was granted by the NHMRC-registered Human Research Ethics Committees of Cerebral Palsy League of Queensland (EC00417) and The University of Queensland (EC00456/7).

Disclosure statement

No potential conflict of interest was reported by the author(s). The authors have stated that they had no interests that might be perceived as posing a conflict or bias.

Additional information

Funding

Investigator JQ was supported by an Australian Commonwealth Research Training Program (RTP) scholarship and a Ph.D. top-up scholarship from Choice, Passion, Life.