While some young adults with cerebral palsy are able to live independently, maintaining jobs and relationships, most still live with their parents, depending on them financially and for help with daily activities, as well as having difficulties in social situations, a study shows.
These findings point to figuring out ways to reduce the impact of communication difficulties and intellectual disability — the two most important factors in social participation — to improve these patients’ abilities to participate in social activities.
The study, “Exploring social participation in young adults with cerebral palsy,” was published in the Journal of Rehabilitation Medicine.
Young adults with cerebral palsy have reported issues with transitioning from living with their families to becoming independent. Specifically, some of the main problems for these patients involve living arrangements, occupation, personal care, and interpersonal relationships.
However, the symptoms and features of cerebral palsy are diverse among patients, which makes it hard to clarify the link between specific disabilities and social issues related to transitioning to independence in young adults with cerebral palsy.
To study this link, researchers from the Karolinska Institutet in Sweden examined social issues in young adults with cerebral palsy. They explored links between these social issues and overall motor abilities, hand function, communication capability, and intellectual disability.
A total of 61 young adults with cerebral palsy between the ages of 20 and 22 participated. The study consisted of physical examination and questionnaires on social issues including living arrangements, relationships, occupation, personal finances, the extent of family support with personal care, and physical examination.
Of these patients, 20% had moved away from home, compared with nearly half (44%) in age-matched young adults in Sweden. This is a major difference — young adults with cerebral palsy, to a large extent, appear to remain at home with their parents.
Most (79%) young adults with cerebral palsy but without intellectual disability had some form of employment or were attending higher or vocational education. About 1 in 5 of young adults with cerebral palsy but without intellectual disability had no employment or education activity at all. This is double the official Swedish statistics for 2015 of all 20- to 24-year-olds neither employed nor in ongoing education. Nevertheless, 15% of the total group were not employed or going to school.
Roughly half of the young adults with cerebral palsy relied on family members for everyday activities, including at night. Most often the parents, but also siblings, usually helped with dressing, washing, toilet visits, assisting in changing sleeping positions, and observing signs of seizures at night.
“We claim that, at this age, this is a major obstacle in transitioning to a life independent of parental family support,” the researchers wrote.
The ability to send and receive communication and the presence of intellectual disability were linked with most social issues in young adults with cerebral palsy. In contrast, classifying participants into different ranks for overall motor function did not explain social issue type or prevalence. This suggests that cognitive function and communication abilities are important for social functioning in young adults with cerebral palsy.
“This suggests that priority should be given to interventions aimed at alleviating the impact of these particular risk factors,” the researchers said.
They recommend future larger studies with formal cognitive testing and examination of communication abilities, to clarify the role of each of the specific social issues related to young adults with cerebral palsy who are in the process of becoming independent.