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.

Perceived Attainment of Developmental Tasks in Adolescents with and without Physical Disabilities

“…The higher perceived autonomy from parents in adolescents with PD compared to their peers without PD was at first sight counterintuitive and differed from previous findings (e.g., Everts et al 2008;Michelsen et al 2014). As the difference observed between the groups was based on the higher percentage of students with PD living away from their parents during term time, our results indicate that spending less time with parents increases perceived autonomy.…”

“…For example, Blum and colleagues (1991) found that many adolescents with PD were highly dependent on their parents for personal care. In accordance with this result, adolescents with PD reported less autonomy than adolescents without motor impairment (Everts et al 2008;Michelsen et al 2014). Adolescents with PD were also significantly less likely to have (paid) work experience than peers without PD (Anderson and Vogel 2000;Michelsen et al 2014) and scored significantly lower than able-bodied students on a measure of vocational development (Goldberg 1989).…”

“…A recent study found that adolescents with heterogeneous levels of PD showed, on average, less autonomy than adolescents in the general population, but adolescents with only minor impairment reported being as autonomous as adolescents in the general population (Michelsen et al 2014). Friendships (Michelsen et al 2014), popularity among peers (Cheng and Udry 2002), and romantic attraction (Cheng and Udry 2002) were also more restricted in the case of more severe physical impairment. In contrast, the severity of the PD did not affect whether or not young people formed intimate and sexual relationships in a study by Wiegerink et al (2008).…”

“…Adolescents with PD were also significantly less likely to have (paid) work experience than peers without PD (Anderson and Vogel 2000;Michelsen et al 2014) and scored significantly lower than able-bodied students on a measure of vocational development (Goldberg 1989). Among employed adolescents with motor impairment, the majority had only mild impairment (Michelsen et al 2014). …”

Gait analysis to guide a selective dorsal rhizotomy program

“…Participation is generally significantly restricted as a result of cerebral palsy but this varies according to environmental factors as well as the severity of the condition [27]. Improvement in mobility resulting from effective treatment should lead to an improvement in participation.…”