European study of frequency of participation of adolescents with and without cerebral palsy

Abstract

Children with cerebral palsy participate less in everyday activities than children in the general populations. During adolescence, rapid physical and psychological changes occur which may be more difficult for adolescents with impairments. Within the European SPARCLE project we measured frequency of participation of adolescents with cerebral palsy by administering the Questionnaire of Young People's Participation to 667 adolescents with cerebral palsy or their parents from nine European regions and to 4666 adolescents from the corresponding general populations. Domains and single items were analysed using respectively linear and logistic regression. Adolescents with cerebral palsy spent less time with friends and had less autonomy in their daily life than adolescents in the general populations. Adolescents with cerebral palsy participated much less in sport but played electronic games at least as often as adolescents in the general populations. Severity of motor and intellectual impairment had a significant impact on frequency of participation, the more severely impaired being more disadvantaged. Adolescents with an only slight impairment participated in some domains as often as adolescents in the general populations. Regional variation existed. For example adolescents with cerebral palsy in central Italy were most disadvantaged according to decisional autonomy, while adolescents with cerebral palsy in east Denmark and northern England played sports as often as their general populations. Participation is an important health outcome. Personal and environmental predictors of participation of adolescents with cerebral palsy need to be identified in order to design interventions directed to such predictors; and in order to inform the content of services.

Keywords: Adolescence; Cerebral palsy; Disability; Impairment; Participation.

Fig. 1

Comparison of participation of adolescents with CP and those in the general populations across the three domains with latent traits. Differences are in standard deviation units. Vertical bars show the 95% confidence interval of the difference. Difference >0 means adolescents with CP participate more often than adolescents in the general populations. Difference <0 means adolescents with CP participate less often than adolescents in the general populations.

Fig. 2

Comparison of participation of adolescents with CP and those in the general populations in single items of Physical recreation and Sedentary recreation. Odds ratios (ORs) compare participation of adolescents with CP and of those in the general populations according to region and severity of impairment. Vertical bars show the 95% confidence interval of the ORs. OR >1 means adolescents with CP participate more often than adolescents in the general populations. OR <1 means adolescents with CP participate less often than adolescents in the general populations. Confidence intervals of estimates of playing electronic games are cut at OR 10. All adolescents with a mainly motor impairment in Central Italy played electronic games most days and consequently no OR was calculated.

Fig. 3

Comparison of participation of adolescents with CP and those in the general populations in single items of Home life and Educational life. Odds ratios (ORs) compare participation of adolescents with CP and those in the general populations according to region and severity of impairment. Vertical bars show the 95% confidence interval on the ORs. OR >1 means adolescents with CP participate more often than adolescents in the general populations. OR <1 means adolescents with CP participate less often than adolescents in the general populations. All adolescents with a mainly motor impairment from central Italy participated in activities in school breaks most days and consequently no OR was calculated.