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雷特综合征患儿的日常护理。

Day to day care of Rett syndrome children.

作者信息

Murphy M

机构信息

Kennedy Institute, Baltimore, Maryland.

出版信息

Brain Dev. 1987;9(5):546-9. doi: 10.1016/s0387-7604(87)80084-0.

Abstract

Girls with Rett syndrome are profoundly handicapped and are incapable of an independent life. The basic living skills of feeding, toileting, dressing, mobilising and communication are examined and advice as to how these girls can best be helped in these areas is suggested. The changing impact of the diagnosis on parents, as the condition becomes more widely know, is mentioned, and the physicians' attention is directed to the parental and family stresses caused through the presence of a profoundly handicapped child in a family so that he or she may be careful in not adding to this stress by making further unrealistic demands, but rather be encouraged to act in a supportive and encouraging manner cognisant of the sometimes limited resources which are available to individual families.

摘要

患有雷特综合征的女孩存在严重残疾,无法独立生活。文中对进食、如厕、穿衣、活动和沟通等基本生活技能进行了审视,并就如何在这些方面更好地帮助这些女孩提出了建议。随着该病症被更广泛地了解,文中提到了诊断结果对父母不断变化的影响,并提醒医生关注因家中存在严重残疾儿童而给父母和家庭带来的压力,以便医生在提出进一步不切实际的要求时注意不要增加这种压力,而是鼓励他们以支持和鼓励的方式行事,同时要认识到个别家庭可用资源有时有限。

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