Transition-age young adults with cerebral palsy : Level of participation and the influencing factors

Abstract

Background and Objectives: The aim of this study was to identify the level of participation in the context of the developmental transition from adolescence to adult life for young adults with cerebral palsy (CP) and the factors that had an influence on participation. Materials and Methods: Eighty-one young adults (16–21 years old) with CP and with normal or slightly decreased cognitive function participated in this study. Assessments were made using the Rotterdam Transition Profile (RTP) and the WHO Disability Assessment Schedule 2.0 (WHODAS 2.0). In the binary regression model, levels of participation (RTP scores) were set as dependents and the level of disability (WHODAS 2.0 scores), age, and level of gross motor function were set as independent variables. Results: In the age group <18 years, in three out of seven RTP domains, less than 10% of participants were in phase 2 (experimenting and orientating toward the future), i.e., finance—7%, housing—7%, sexuality—4%. In the age group ≥18 years, 21% (education and employment), 56% (intimate relationships), and 59% (sexuality) of the participants were in phase 0 (no experience). Higher scores in WHODAS 2.0 domains showed positive associations with RTP domains, i.e., cognition with social activities, mobility with transportation, self-care with sexuality and transportation, and life activities with transportation. Age was positively associated with education and employment, finance, housing, and sexuality. Low motor function according to the Gross Motor Function Classification System (GMFCS) had negative associations with autonomy in social activities, sexuality, and transportation. Conclusions: Young adults with cerebral palsy showed low levels of autonomy in all domains of participation. When addressing a person’s improvement in terms of their participation, the promotion of abilities in cognition, mobility, self-care, and life activities should be attempted. Age and gross motor function influenced autonomy in participation, but not in all domains.