Capjon Hilde, Bjørk Ida Torunn
Rikshospitalet, Oslo University Hospital, Department of Child Neurology, Oslo, Norway.
Dev Neurorehabil. 2010;13(2):80-7. doi: 10.3109/17518420903373511.
This study explores the pre-operative situation of children accepted for multilevel surgery for cerebral palsy (CP) and their parents.
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.
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.
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.
本研究探讨接受脑瘫（CP）多级手术的儿童及其父母的术前情况。
纳入8名痉挛性CP严重程度各异的门诊儿童及其父母。分别对儿童和父母进行了定性的半结构化访谈。
儿童及其父母的日常生活很脆弱。儿童努力争取社会认可和正常生活的程度增加了他们的痛苦。身体能力的下降导致疼痛和疲劳，这是父母和儿童进行手术的主要动机。尽管父母对手术态度矛盾，但他们传达了对孩子美好生活的希望和谨慎乐观态度。
父母和儿童的经历表明，需要做出改进，以确保在学校和各级医疗服务中为残疾儿童提供便利，在多级手术术前阶段实现沟通平等并提高认识。
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