An exploratory study investigating the multidimensional factors impacting the health and well-being of young adults with cerebral palsy

Abstract

Background: For young adults with cerebral palsy, changes in psychological and social development, in conjunction with the progression of musculoskeletal deformities and the onset of secondary conditions, make the transition to adulthood a difficult developmental phase. Preliminary evidence shows that many of the physical impairments reported in adults with cerebral palsy begin during late adolescence; however, there is little information about prevalence of impairments and the combined role impairments, psychological and social factors have on the health and well-being of young adults with cerebral palsy.Methods: A cross-sectional, multidimensional survey approach was used to examine the ambulatory decline, pain, pain interference, depression, fatigue, locus of control, emotional support, overall health status and satisfaction with life of young adults with cerebral palsy, age 18–30 years.Results: Ninety-seven surveys (57 self-report and 40 proxy report) were completed across all gross motor function classification system levels. No significant differences were found amongst functional levels for pain, pain interference, fatigue or depression. Only pain interference significantly contributed to the variance in health status, while emotional support significantly contributed to the variance in satisfaction with life.Conclusions: The large percentage of young adults in this study reporting pain, fatigue and depression indicates that the onset of these impairments may begin at an earlier age. This study found that emotional support from family facilitates improved health status and enhanced satisfaction with life in young adults with cerebral palsy. Similar to physical impairments, social and psychological factors also contribute to the health and well-being of young adults with cerebral palsy, a holistic approach to care that includes preventative strategies to address both mental and physical health outcomes should begin well in advance to their transition into young adulthood in order to mitigate the impact these factors have on health and well-being during this critical developmental time.Implications for RehabilitationPain, fatigue and depression were reported for all levels of GMFCS and should be assessed and addressed with appropriate treatment early in order to determine whether there are surgical, pharmacological, rehabilitative or counseling services that could be implemented at a younger age to improve outcomes in young adulthood.For young adults with CP, emotional support plays a significant role in the health status and satisfaction with life and strategies to enhancing support beyond the family could enhance health status and satisfaction with life.