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成年脑瘫患者的社会融入

Social integration of adults with cerebral palsy.

作者信息

Michelsen Susan Ishøy, Uldall Peter, Hansen Thomas, Madsen Mette

机构信息

National Institute of Public Health, Rigshospitalet (National University Hospital) Copenhagen, Denmark.

出版信息

Dev Med Child Neurol. 2006 Aug;48(8):643-9. doi: 10.1017/S0012162206001368.

DOI:10.1017/S0012162206001368
PMID:16836775
Abstract

Social integration and independence is the ultimate goal of habilitation and social support for patients with cerebral palsy (CP). Having a partner and having children provide support for social integration of adults with or without a disability. We studied 416 participants with CP born between 1965 and 1970 (243 males, 173 females; mean age 32 y 2 mo [SD 2 y]; age range 29-35 y) and compared them with 2247 age-matched comparison individuals. Diagnostic subtypes of the 416 participants were: 31% hemiplegia, 49% diplegia, 11% tetraplegia, and 9% other types. The level of motor impairment, estimated in childhood, with regard to walking ability was 65% able to walk without assistance, 22% with assistance, and 12% not able to walk (for 1% of the participants their walking ability was not known). We found no sign of increased social integration over the past two or three decades in Denmark. Sixty-eight per cent lived independently, 13% lived with their parents, and 16% lived at an accommodation facility arranged by the county (institution). Twenty-eight per cent of the participants were cohabiting and 19% had children. The presence of epilepsy and the severity of physical or cognitive impairment as assessed in childhood predicted independent living and physical and cognitive impairment predicted cohabitation, but parents' socioeconomic position and region of living did not. Fifty-five percent of the participants, compared with 4% of the comparison group, had no competitive employment, cohabiting partner, or biological children. The remaining participants had at least one of these types of social contact, but this more optimally socially integrated half of the participants only combined all three types of social contact half as often as the comparison group. This could be due to cognitive difficulties or premature ageing.

摘要

社会融合与独立是脑瘫(CP)患者康复训练及社会支持的最终目标。拥有伴侣和子女可为有或无残疾的成年人融入社会提供支持。我们研究了1965年至1970年出生的416名CP患者(男性243名,女性173名;平均年龄32岁2个月[标准差2岁];年龄范围29 - 35岁),并将他们与2247名年龄匹配的对照个体进行比较。这416名参与者的诊断亚型为:偏瘫型31%,双瘫型49%,四肢瘫型11%,其他类型9%。童年时期评估的运动障碍程度方面,就行走能力而言,65%能够独立行走,22%需要辅助行走,12%无法行走(1%参与者的行走能力未知)。我们发现,在丹麦过去二三十年里,没有社会融合增加的迹象。68%的人独立生活,13%与父母同住,16%住在郡里安排的住宿机构(福利院)。28%的参与者有同居伴侣,19%有孩子。童年时期评估的癫痫存在情况以及身体或认知障碍的严重程度可预测独立生活,身体和认知障碍可预测同居情况,但父母的社会经济地位和居住地区则无此预测作用。与对照组的4%相比,55%的参与者没有竞争性就业、同居伴侣或亲生孩子。其余参与者至少有其中一种社会联系,但在社会融合方面更优的这一半参与者将所有三种社会联系结合起来的频率仅为对照组的一半。这可能是由于认知困难或过早衰老。

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