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父母对脑瘫诊断的反应:解决情况、年龄与残疾严重程度之间的关联。

Parents' reactions to the diagnosis of cerebral palsy: associations between resolution, age and severity of disability.

作者信息

Schuengel C, Rentinck I C M, Stolk J, Voorman J M, Loots G M P, Ketelaar M, Gorter J W, Becher J G

机构信息

Department of Clinical Child and Family Studies, VU University Amsterdam, Amsterdam, The Netherlands.

出版信息

Child Care Health Dev. 2009 Sep;35(5):673-80. doi: 10.1111/j.1365-2214.2009.00951.x. Epub 2009 Mar 23.

Abstract

BACKGROUND

For parents, receiving a diagnosis, typically in early childhood, that their child has cerebral palsy may conjure up high distress and anxiety. Resolution of these initial reactions may help parents to focus on the challenges and needs of their children.

AIMS

of the study were to test whether parents of older children displayed resolution more often than parents of younger children, and whether parents of children with less severe cerebral palsy also showed more resolution.

METHOD

Resolution of reactions to diagnosis was assessed with the Reaction to Diagnosis Interview, in a clinic-based sample of 255 parents of children with cerebral palsy aged between 1.4 and 17.3 years. Physicians rated motor ability using the Gross Motor Function Classification System.

RESULTS

Overall, the responses of 81.6% of the parents were predominantly indicative of resolution. Unresolved reactions were significantly more often found among parents of younger children and parents of children with more severe motor disabilities. Among parents of teenage children, resolution was more often apparent from a focus on action to better the lives of their children, whereas in parents of younger children, it was more apparent from their focus on constructive thoughts and information seeking.

CONCLUSIONS

Given time, the large majority of parents may resolve their reactions to the diagnosis that their child has cerebral palsy. Parents of the most severely affected children may need specific support which, given the age trends, might be aimed at different resolution processes for parents of younger and older children.

摘要

背景

对于父母而言,通常在幼儿期得知自己的孩子患有脑瘫,可能会引发高度的痛苦和焦虑。解决这些最初的反应可能有助于父母关注孩子的挑战和需求。

目的

本研究旨在测试大龄儿童的父母是否比小龄儿童的父母更常表现出反应的解决,以及脑瘫症状较轻的孩子的父母是否也表现出更多的反应解决。

方法

采用《对诊断的反应访谈》评估对诊断反应的解决情况,该样本来自一家诊所,包含255名年龄在1.4岁至17.3岁之间的脑瘫患儿的父母。医生使用粗大运动功能分类系统对运动能力进行评分。

结果

总体而言,81.6%的父母的反应主要表明已解决。未解决的反应在小龄儿童的父母和运动障碍更严重的孩子的父母中更为常见。在青少年孩子的父母中,从关注改善孩子生活的行动中更常体现出反应的解决,而在小龄儿童的父母中,从关注建设性思维和寻求信息中更常体现出反应的解决。

结论

假以时日,绝大多数父母可能会解决他们对孩子患有脑瘫这一诊断的反应。受影响最严重的孩子的父母可能需要特定的支持,鉴于年龄趋势,这种支持可能针对小龄和大龄儿童的父母采用不同的反应解决方式。

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