Exploring Issues of Participation Among Adolescents with Cerebral Palsy: What's Important to Them?

ABSTRACT

The purpose of this cross-sectional study was to determine what participation issues are important to adolescents with cerebral palsy (CP). Two hundred and three adolescents with CP (mean age 16.0 ± 1.8 years) were assessed using the Canadian Occupational Performance Measure (COPM). This was done through semistructured interviews by trained physical and occupational therapists. Adolescents responded either directly (n = 144) or through a parent or a caregiver (n = 59) if they were unable to communicate. Issues were extracted from completed questionnaires and coded under three COPM categories (self-care, productivity, and leisure) and 16 subcategories. There was no association between the total number of issues identified and gender (p = .99), age (p = .88), type of respondent (adolescents versus parent) (p = .27), Gross Motor Function Classification System (GMFCS) level (p = .93), or 66-item Gross Motor Function Measure (GMFM-66) score (p = .45). The issues identified most frequently were related to active leisure (identified by 57% of participants), mobility (55%), school (48%), and socialization (44%). Interventions aimed at improving participation among adolescents with physical disabilities, such as CP, should be directed towards these four key areas. Health care professionals should also recognize and consider the interaction of person and environment when addressing issues related to participation.

KEYWORDS. :

• Adolescence
• cerebral palsy
• disability
• leisure activity
• participation

ACKNOWLEDGEMENTS

This study was supported by a grant for the Adolescent Study of Quality of Life, Mobility and Exercise (ASQME) from the Canadian Institutes of Health Research (MOP-53258). At the time of this study, the Ontario Ministry of Health and Long-term Care provided partial funding for the CanChild Centre for Childhood Disability Research. Sarah Hill and Emily Stairs are credited for coding the questionnaires and producing the interim analysis when they were students in the School of Rehabilitation Science master's program. Members of the ASQME study group include Drs. Doreen Bartlett, Steven Hanna, John Lawless, Robert Palisano, Stephen Walter, and Barb Galuppi. The authors are especially indebted to the adolescents and their families who participated in this study and so openly shared their thoughts and personal experiences.

Declaration of interest: The authors report no conflict of interest. The authors alone are responsible for the content and writing of this paper.

ABOUT THE AUTHORS

Michael H Livingston, BASc, is a medical student at the University of Western Ontario in London, Ontario, Canada. Debra Stewart, MSc, OT Reg (Ont), is an Occupational Therapist and Associate Professor at the School of Rehabilitation Science at McMaster University, Hamilton, Ontario, Canada. Peter L. Rosenbaum, MD, FRCPC, is a Developmental Pediatrician, Canada Research Chair in Childhood Disability, and Professor of Pediatrics at McMaster University, Hamilton, Ontario, Canada. Dianne J. Russell, PhD, is a health services researcher and Associate Professor at the School of Rehabilitation Science at McMaster University, Hamilton, Ontario, Canada.