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[身体残疾儿童的心理社会发展。来自北欧对527名脊髓脊膜膨出儿童的研究经验]

[Psychosocial development of children with physical disabilities. Experiences from a Nordic study of 527 children with myelomeningocele].

作者信息

Lie H R

机构信息

Arhus Kommune, social- og sundhedsforvaltning, afdeling for børn og unge, skolelaegeordningen.

出版信息

Ugeskr Laeger. 1995 May 29;157(22):3175-8.

PMID:7770979
Abstract

Data from a Nordic study on children with meningomyelocele (MMC), aged 4-18 years, are related to studies on the social and personal situation of children with physical disabilities. The data were collected in 1984 from medical records and by means of a postal questionnaire. In total 527 children with MMC and 7792 control children were included; the parents of the latter answered the same questionnaire as the former. As many as 80% of the children with MMC were integrated in ordinary school classes. However they had fewer friends and were less active outside home than children in general. Children with MMC need to develop autonomy and independence of their parents, especially with regard to their leisure activities and personal matters including personal hygiene. Concerning personal hygiene, independence could be developed for most of the children by systematic training, even among those who regularly use catheterisation. Both child and parents need support from multidisciplinary habilitation teams in order to develop the coping ability of the child. In school, along with assessment of the disabled child's learning ability, there is also a need to assess its personal and social functioning. According to studies by A. Antonovsky, people who experience their situation as comprehensible, manageable and meaningful are more healthy than others. It seems valuable to apply these three aspects to the way of thinking in work with habilitation.

摘要

一项针对4至18岁脊髓脊膜膨出(MMC)患儿的北欧研究数据,与关于身体残疾儿童的社会和个人状况的研究相关。这些数据于1984年从医疗记录中收集,并通过邮寄问卷的方式获得。总共纳入了527名MMC患儿和7792名对照儿童;后者的父母回答了与前者相同的问卷。多达80%的MMC患儿融入了普通班级。然而,与一般儿童相比,他们的朋友较少,在家外的活动也较少。MMC患儿需要培养自主性并摆脱对父母的依赖,特别是在休闲活动和包括个人卫生在内的个人事务方面。关于个人卫生,即使是那些经常使用导尿管的儿童,通过系统训练也能使大多数儿童培养出独立性。儿童及其父母都需要多学科康复团队的支持,以培养儿童的应对能力。在学校,除了评估残疾儿童的学习能力外,还需要评估其个人和社会功能。根据A. 安东诺夫斯基的研究,那些认为自己的处境易于理解、易于掌控且有意义的人比其他人更健康。将这三个方面应用于康复工作的思维方式似乎很有价值。

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