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Ambulant children with spastic cerebral palsy and their parents’ perceptions and expectations prior to multilevel surgery

Purpose: 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. Conclusion: 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.