Speech problems limit independence for adults with cerebral palsy

Introduction Communication is imperative for social participation and for being an independent and autonomous adult. Despite this, little is known about how communication abilities in adults with childhood-onset disabilities impacts independence. This study explores nine everyday life domains and the associations of independence with communication effectiveness and speech impairment in adults with cerebral palsy (CP). Methods A cross-sectional study was conducted in western Sweden. Transitioning to and establishing independence in adulthood was assessed using the Rotterdam Transition Profile. Associations with communication effectiveness and speech production, as well as the use of augmentative and alternative communication (AAC), was explored. A total of 139 participants born 1979 - 1998 (74 males, 62 females, and 3 non-binary; mean age 30y 1mo, range 18 - 43y) were included of which 28% were described to have complex communication needs. Results Over 70% of all participants reported the highest level of independence in the domains “Employment and education” and “Finances”. In other domains, for example “Relationships”, less than 50% reported at this level. All participants reported low levels of independence in the domains “Service and aids” and “Sexuality”. Greater independence in all everyday life domains was associated with having effective communication. Impaired speech was significantly associated with less independence in all domains, except “Finances”. The use of AAC supported independence in the domains “Leisure” and “Relationships”. Discussion Communication is a crucial factor to consider in both research and practice to enhance the understanding of independence in persons with cerebral palsy. Complex communication needs are common among adults with CP and must be addressed — regardless of motor function — to support successful transition to adulthood and living the life one wants.