Journal of Rehabilitation Medicine 51-3 | Page 21

J Rehabil Med 2019; 51: 167–174 ORIGINAL REPORT EXPLORING SOCIAL PARTICIPATION IN YOUNG ADULTS WITH CEREBRAL PALSY* Dan N. O. JACOBSON, MD, 1,2 , Kristina LÖWING, PT, PhD 1,3 , Emma HJALMARSON, PT 3 and Kristina TEDROFF, MD, PhD 1 From the 1 Department of Women’s and Children’s Health, Neuropediatric Unit, Karolinska Institutet, Stockholm, 2 Centre for Clinical Research Sörmland, Uppsala University, Eskilstuna and 3 Karolinska University Hospital, Stockholm, Sweden Objectives: To describe social outcomes for young adults with cerebral palsy, and to explore associa­ tions of social outcomes with their classification le­ vels 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 population- based inclusion approach at a neuropaediatric refer­ ral centre in Sweden. Subjects: Sixty-one young adults with cerebral pal­ sy, 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, and physical examination. Results: Twenty percent of the young adults with ce­ rebral palsy had moved out of the parental home. Forty-three percent were dependent on family sup­ port 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 so­ cial 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 sup­ port, 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 the­ se particular disabilities should be prioritized. Key words: cerebral palsy; young adult; social participation; classification; communication disorder. Accepted Dec 19, 2018; Epub ahead of print Feb 27, 2019 J Rehabil Med 2019; 51: 167–174 Correspondence address: Dan N. O. Jacobson, Neuropediatric Unit, Astrid Lindgren’s Children’s Hospital, Karolinska University Hospital, 171 76 Stockholm, Sweden. E-mail: [email protected] *This study was performed at the Neuropediatric Unit, Astrid Lindgren’s Children’s Hospital, Karolinska University Hospital, Stockholm, Sweden. Parts of the material were presented as a poster at the 28 th Annual Meeting of the European Academy of Childhood Disability, Stockholm, Sweden, in June 2016. LAY ABSTRACT A representative group of young adults with cerebral palsy were studied in order to learn more about so- cial 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, low- functioning communication level and intellectual disabi- lity 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. C erebral palsy (CP) is the most common cause of childhood onset life-long physical disability and is present in an estimated 17 million individuals worldwide; most having a lifespan similar to the ge- neral population (1, 2). Consequently there is a large population of adults with CP. Research has traditionally focused on the childhood years and little is known about the health and social situation of adults with CP. Michelsen and colleagues showed that, in 2006, 55% of Danish adults with CP (mean age 32 years) were unemployed, did not co-habit with a partner, and did not have children, compared with 4% of the control po- pulation. This situation appeared unchanged compared with 3 decades earlier (3). A Swedish postal survey of adults with CP (20–58 years of age) found that most lived in a single household and 24% worked full time (4). Population-based surveillance programmes for adults, such as Cerebral Palsy Follow-Up Program Adult, are emerging and have reported results from a population of young adults in southern Sweden in the age range 18–23 years (5). They found that 20% of subjects were employed, but most still lived at home (5). Verhoef and colleagues in the Netherlands repor- ted employment rates of 49% in 20–24 year-olds with spastic CP and average intellect (6). Social well-being is an integral part of the World Health Organization’s (WHO) definition of health (7). Further, the WHO’s International Classification of Functioning, Disability and Health (ICF) offers possibilities to describe functioning and health from various perspectives (8). The ICF shifts the focus from cause to impact on functioning, which covers body functions/structures, activity and participation, and This is an open access article under the CC BY-NC license. www.medicaljournals.se/jrm Journal Compilation © 2019 Foundation of Rehabilitation Information. ISSN 1650-1977 doi: 10.2340/16501977-2517