Participation in Social Roles of Adolescents With Cerebral Palsy: Exploring Accomplishment and Satisfaction

Abstract

Objective: To explore participation in social roles of adolescents (aged 12-18y) with cerebral palsy (CP), in terms of satisfaction compared with accomplishment. Design: Cohort study as part of a prospective longitudinal research program. Setting: Clinic. Participants: Participants were adolescents (N=45; 58% male, mean age 15y 6mo) with CP at levels I-II (88%) and III-IV-V (12%) of the Gross Motor Function Classification System. Interventions: Not applicable. Main Outcome Measures: Accomplishment (0-9 scale; with score <8 “having difficulties”) and satisfaction (1-5 scale; with score 3 “neutral”) were assessed using the Life-Habits questionnaire, on 6 domains (Responsibilities, Interpersonal relationships, Community life, Education, Employment, Recreation). Per domain, we analyzed scatterplots of accomplishment vs satisfaction. Additionally, we compared determinant-models (including factors of CP, activity, person, and environment) using regression analysis. Results: For accomplishment, mean scores were <8.00 except for Interpersonal relationships. For satisfaction, mean scores varied between 3.85 and 4.34. Overall, individuals with similar levels of accomplishment showed large ranges in their levels of satisfaction, which was expressed by low explained variances, especially on Education (6%). Furthermore, different sets of determinants were found for accomplishment (predominantly CP factors) compared with satisfaction (predominantly environment factors). Conclusions: This study revealed a dissociation between participation accomplishment and satisfaction with participation among adolescents with CP. For practice and research, we recommend not only to focus on accomplishment but also, if not mainly, on satisfaction. Keywords: Adolescent, Cerebral palsy, Personal satisfaction, Rehabilitation, Social participation