Experiences of participation in daily life of adolescents and young adults with cerebral palsy: A scoping review

Abstract

Young adulthood is an important time for learning skills, making choices, and exploring identity. How do adolescents and young adults with cerebral palsy (CP) feel about their participation in day-to-day life?

We found and reviewed research from 2001 onwards that looked at the participation of young people with CP, aged 15 to 34 years, across the important areas of young adult life. Our goal was to understand what research existed, and to summarize the experiences of participation that young people with CP have had.

There were 38 articles from 32 different research projects. Almost all of these were from high-income countries, and mostly (66%) published in the last 5 years. There was information from 2759 young people with CP who were more likely male (58%), able to walk on their own (54%), live with parents or family (71%), and be a high school or university student (32%).

We found that young people with CP want to be a part of all life areas of young adulthood, to build life skills, and make more choices. Trying to participate in the adult world was described as hard work. The things that made participating most difficult were the ways communities and systems were built, and people's lack of knowledge about disability. Supportive family and friends were especially important during this life stage.