Health and Well-being of Young Adults with Cerebral Palsy

Health is a multidimensional, holistic, concept integrating physical and mental health. In childhood, the most common cause of physical disability is Cerebral Palsy (CP). For individuals with CP, health and well-being is impacted by the complex interactions among their physical impairments, activity, participation and environmental barriers. Although CP is considered non-progressive, secondary conditions (pain and fatigue) and their functional consequences have been found to worsen as the individual with CP ages. While preliminary evidence shows that many of the physical impairments (pain, fatigue, depression) reported in adults with CP begin during late adolescence, there is little information about the role personal and environmental factors, impairments, activity limitations, and participation restrictions have on health and well-being of young adults with CP. To understand the health and well-being of young adults with CP, the International Classification of Functioning, Disability and Health (ICF), a World Health Organization framework, guided the selection of survey instruments for this study. Surveys were sent to 610 young adults (18-30 years) with CP. 95 surveys were returned, 55 were self-reported and 40 were completed by proxies. Increasing severity of impairment was associated with decreased participation in daily activities and social roles, while loss of ambulatory ability, pain, fatigue, depression, and activity level did not differ by severity of impairment. Environmental barriers restricted the level of participation only for the self-report participants. Health status was decreased in those who self-reported increased pain, fatigue, and depression; offset by emotional support. Life satisfaction was decreased by depression and poor health; offset by emotional support. Addressing the physical impairments, activity limitations, participation restrictions, personal factors and environmental barriers impacting young adults with CP requires coordinated efforts among the medical, educational and vocational systems. These efforts need to begin early with appropriate assessment and treatment of impairments, provision of assistive technologies and augmentative communication, and adaptation of the environment to facilitate participation in activities and social roles. The health and well-being in young adults with CP can also be improved with enhanced emotional support beyond the family unit through peer support groups, mentors, and other adult role models