Social consequences of cerebral palsy

Reproduction of any part is permitted provided that acknowledgement is given to the source. National Institute of Public Health would appreciate receiving any reproduction referring to, abstracting or citing any part of this production. Preface Cerebral palsy is defined as a permanent but not unchanging disorder. Nevertheless, paediatricians are the only medical specialists and they are in charge of the rehabilitation teams providing treatment and support for children with cerebral palsy and their families. Adult neurologists have no tradition of taking care of cerebral palsy in adult-hood. Traditionally, treatment has focused on the physical achievements of the child, and physical therapy is offered through special schools and hospital departments of paediatrics. Neuropaediatricians and orthopaedics follow the physical, mental and social development of the children. But when they grow into adolescents and adulthood, traditionally a difficult period for even nondisabled people, they are left alone. I wondered why care is not provided for adults with cerebral palsy. What happens to the disabled adolescents when they become adults? Are they integrated in society and living life like any nondisabled adult using compensating aids? Or are they isolated and strongly dependent on their parents? And what happens to the parents when their disabled child gets older? Do the parents manage to continue with the same level of social integration as before the child was born? Do parents put their societal participation on hold for some years and then become active again when the child grows older? Or are they isolated with their disabled adult son or daughter? This was my motivation to study the social consequences of cerebral palsy in both adults with cerebral palsy and parents to a child with cerebral palsy. The PhD dissertation is based on the following three papers. A cohort study of parents' social situation after the birth of a child with cerebral palsy. Manuscript. x staff at the Danish Association Society for Cerebral Palsy, Peder Esben and Kurt Agensø, for many interesting and instructive discussions that placed all the figures into a real life perspective, and Gitte Madsen for explaining Denmark's disability policies and how they affect families; x the children and adults with cerebral palsy I met during my work in the Cerebral Palsy Centre and the parents of children with cerebral palsy I met at a focus group discussion in the European research project SPARCLE, who all contributed to putting faces and real stories behind …