Exploring social participation in young adults with cerebral palsy

Abstract

A representative group of young adults with cerebral palsy were studied in order to learn more about social issues, such as living arrangements, employment and relationship status. It was found that, while some young adults were well-established in occupations and relationships, many remained highly dependent on their parental families and their social situation was reduced compared with their peers. Furthermore, lowfunctioning communication level and intellectual disability were the 2 most important risk factors for having a sub-optimal social situation. This suggests that priority should be given to interventions aimed at alleviating the impact of these particular risk factors. Objectives: To describe social outcomes for young adults with cerebral palsy, and to explore associations of social outcomes with their classification levels within the Gross Motor Function, Manual Ability and Communication Function Classification Systems, and with the presence of intellectual disability. Design: A cross-sectional study with a populationbased inclusion approach at a neuropaediatric referral centre in Sweden. Subjects: Sixty-one young adults with cerebral palsy, age 20-22 years. Methods: Physical examination and questionnaires on social outcomes including living arrangements, relationships, occupation, personal finances, extent of family support with personal care. Results: Twenty percent of the young adults with cerebral palsy had moved out of the parental home. Forty-three percent were dependent on family support for basic activities of daily living. Seventy-nine percent of those without intellectual disability were employed or studying. The Communication Function Classification Systems, and presence of intellectual disability, demonstrated associations with most social outcomes, followed in significance by Manual Ability Classification System. Conclusion: In this study young adults with cerebral palsy to a high extent lived in the parental home, and more often without employment, compared with their peers. Many were dependent on parental support, financially, and with activities of daily living. Intellectual disability and communication function were important determinants of social participation. Interventions aimed at alleviating the impact of these particular disabilities should be prioritized.

Health‐related quality of life, pain, and fatigue in young adults with cerebral palsy

“…Study limitations are primarily the sample size, and the low included proportion of the target population. However, the study sample appear to be representative in terms of sex, distribution of GMFCS‐ER levels, clinical subtypes, and prevalence of important comorbidities such as epilepsy and intellectual disability, as described previously . Accordingly, some important sources of selection bias are likely not present.…”

“…Data collection was performed from 2013 up to 2016. The registry and recruitment process have been described in a previous publication …”

Transition-Age Young Adults with Cerebral Palsy: Level of Participation and the Influencing Factors

“…Logistic binary regression shows that low gross motor function is associated with lower autonomy in leisure (social activities), sexuality, and transportation. Jacobson et al [12] also revealed that for young adults with CP, their functional level has an influence on social participation aspects, such as socialization with friends and experience in intimate relationships (in this study, it was not categorized as being with or without sexual intercourse). Furthermore, Schmid et al [31] found that the autonomy in transportation is lower for those GMFCS levels III–V.…”

“…Therefore, much emphasis has now been put on the developmental and healthcare transition process from adolescence to adult life and participation [5,6,7,8,9]. It has been previously reported that young adults with CP participate less in activities, such as housing, paid work, and intimate and sexual relationships than their able-bodied peers [9,10,11], and in terms of finances and activities, many are dependent on parental support [12]. Participation has been defined as involvement in a life situation [13], and for patients with CP, enhancement of participation may lead to a more effective transition to adult life [14,15,16], whereas unemployment, decreased autonomy, and insufficient quality of life may be the consequences of an unsuccessful transition process [17,18].…”

Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

“…Despite they are nowadays enjoying better health care, new communication technologies, and benefiting from societal attitudes allowing inclusion in all areas of living [ 1 ], they continue to face numerous barriers in their daily lives. Research indicated that amongst others, psychological distress, fragmented social interactions, poor accessibility, discrimination linked to disability, and lack of personal economic independence contribute to limited involvement in life situations [ 2 – 4 ] that can extend across adulthood. Another area of concern is their ability to access needed resources that may improve autonomy, self-efficacy and health [ 5 ].…”