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家庭对杜氏肌营养不良症患儿的反应。

Reactions of families to children with Duchenne muscular dystrophy.

作者信息

Buchanan D C, LaBarbera C J, Roelofs R, Olson W

出版信息

Gen Hosp Psychiatry. 1979 Sep;1(3):262-9. doi: 10.1016/0163-8343(79)90028-8.

Abstract

Twenty-five families were interviewed to examine their adjustments to having a child with Duchenne muscular dystrophy (DMD). Chronic emotional stress experienced by families of DMD children was found to be a significant problem in the overall management of the illness. Based on information obtained from the assessment of families' adaptation to their child's illness, recommendations are made concerning parent education, school placement, facilitation of marital harmony, informing the child about his illness, and sensitivity to the responses of other family members.

摘要

研究人员对25个家庭进行了访谈,以考察他们对家中有杜氏肌营养不良症(DMD)患儿的适应情况。结果发现,DMD患儿家庭所经历的长期情绪压力是该疾病整体治疗中的一个重大问题。基于从评估家庭对患儿疾病的适应情况所获得的信息,就家长教育、学校安置、促进婚姻和谐、告知患儿其病情以及对其他家庭成员反应的敏感性等方面提出了建议。

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