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.

Transition from child to adult services for young people with cerebral palsy in Ireland: Influencing factors at multiple ecological levels

“…Service users were selected using a sampling frame that considered relevant characteristics identified in the literature, such as gender, 20 GMFCS level, 21,22 geographical location, and stage of transition. 21,22 We aimed to recruit 20 service providers encompassing health professionals and managers from child and adult services who provide care for young people with CP in Ireland. Health professionals were purposively sampled based on their profession, sector, cohort (paediatric or adult), and geographical region.…”

“…Parents of young people with all severities of physical and intellectual disability were included. Service users were selected using a sampling frame that considered relevant characteristics identified in the literature, such as gender, 20 GMFCS level, 21,22 geographical location, and stage of transition. 21,22 We aimed to recruit 20 service providers encompassing health professionals and managers from child and adult services who provide care for young people with CP in Ireland.…”

Well-Being of Ambulatory Adults With Cerebral Palsy: Education, Employment, and Physical Function of a Cohort Who Received Specialized Pediatric Care

“…These observations have been documented in other countries, such as Norway where individuals with CP had lower odds of completing upper secondary education and had higher odds of receiving a disability pension ( 31 ). Similarly, a study from Latvia showed only 9% of adults having a paid job whereas 44% were still financially dependent as adults ( 32 ). This is consistent with several other studies reporting low employment rates in adults with CP ( 5 , 6 , 10 , 11 ).…”

The Use and Outcomes of Motor Rehabilitation Services Among People With Cerebral Palsy Change Across the Lifespan

“…“Late adulting” in several social and participation domains has been described in the Netherlands ( 20 ), and low levels of employment of people with CP have been reported in several countries ( 38 , 39 ). These difficulties have been found even in high functioning young adults with CP who have no intellectual disability ( 40 ) and in other dimensions of participation like “having a cohabiting partner” or “having a biological descendance” ( 41 ). This parallel evolution between systems throughout the wide transition period from childhood to adulthood requires policy makers to develop national strategies that are adapted to the changing needs of individuals with CP in all domains.…”