Ambulant children with spastic cerebral palsy and their parents' perceptions and expectations prior to multilevel surgery.
OBJECTIVE
This study explores the pre-operative situation of children accepted for multilevel surgery for cerebral palsy (CP) and their parents.


METHODS
Eight ambulatory children with varied severity of spastic CP and their parents were included. Qualitative, semi-structured interviews were carried out separately with the children and parents.


RESULTS
Everyday life of the children and their parents was vulnerable. The degree to which children strived for social acceptance and normality increased their pain. Deteriorating physical capacity resulted in pain and fatigue and was the parents' and children's main motivation for the operation. Although the parents were ambivalent to the operation they mediated hope and cautious optimism about a better life for their children.


CONCLUSIONS
Parents' and children's experiences imply the need for improvements to ensure facilitation for disabled children in schools and all levels of the health service, equality of communication and awareness-raising in the pre-operative phase of multilevel surgery.
Capjon
Hilde
H
Rikshospitalet, Oslo University Hospital, Department of Child Neurology, Oslo, Norway. hilde.capjon@rikshopitalet.no
Bjørk
Ida Torunn
IT
D000293:Adolescent; D002547:Cerebral Palsy / Q000503:physiopathology / Q000534:rehabilitation* / Q000601:surgery; D002648:Child; D019988:Children with Disabilities / Q000523:psychology / Q000534:rehabilitation*; D005221:Fatigue / Q000517:prevention & control; D005260:Female; D006801:Humans; D008297:Male; D009119:Muscle Contraction; D018482:Muscle, Skeletal / Q000503:physiopathology*; D009664:Norway; D010146:Pain / Q000517:prevention & control; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D016138:Walking