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家中有患唐氏综合征兄弟姐妹的儿童的调适:母亲、父亲及儿童的观点

Adjustment of children who have a sibling with Down syndrome: perspectives of mothers, fathers and children.

作者信息

Cuskelly M, Gunn P

机构信息

School of Education, University of Queensland, Brisbane, Queensland, Australia.

出版信息

J Intellect Disabil Res. 2006 Dec;50(Pt 12):917-25. doi: 10.1111/j.1365-2788.2006.00922.x.

DOI:10.1111/j.1365-2788.2006.00922.x
PMID:17100952
Abstract

BACKGROUND

A number of methodological weaknesses have contributed to our relatively poor understanding of the impact on children of having a brother or sister with a disability. These include a focus on poor adjustment, using multidiagnostic groups, inadequate matching, and a failure to consider the perspectives of children and parents together.

METHOD

This study compared the adjustment of 53 siblings of a child with Down syndrome with a comparison group of siblings of children who were developing typically. Children were matched on a case-by-case basis for gender, age and position in family. Families were matched for family size and father's occupation. The age range of the target siblings was 7-14 years. Data were gathered from mothers, fathers and siblings.

RESULTS

There were no significant differences between the groups on adjustment measures. These included parent perceptions of externalizing and internalizing behaviours, parent perceptions of sibling competence, and sibling perceptions of their own competence and self-worth. Associations between measures of adjustment and child reports of their contribution to household functioning depended on sex rather than group membership. There was an association between parental reports of externalizing behaviour and sibling relationships with the brother/sister closest in age.

CONCLUSIONS

Having a brother or sister with Down syndrome does not inevitably lead to poor adjustment. Examination of within-family processes would appear to be more useful in identifying children at risk than merely group membership.

摘要

背景

一些方法上的缺陷导致我们对家中有残疾兄弟姐妹对孩子的影响了解相对不足。这些缺陷包括关注适应不良、使用多种诊断类别、匹配不充分以及未能综合考虑孩子和父母的观点。

方法

本研究将53名唐氏综合征患儿的兄弟姐妹与发育正常儿童的兄弟姐妹对照组进行了适应情况比较。根据性别、年龄和家庭中的排行对儿童进行个案匹配。根据家庭规模和父亲职业对家庭进行匹配。目标兄弟姐妹的年龄范围为7至14岁。数据收集自母亲、父亲和兄弟姐妹。

结果

两组在适应指标上没有显著差异。这些指标包括父母对外化和内化行为的认知、父母对兄弟姐妹能力的认知以及兄弟姐妹对自身能力和自我价值的认知。适应指标与孩子对其对家庭功能贡献的报告之间的关联取决于性别而非组别。父母对外化行为的报告与年龄最相近的兄弟姐妹之间的关系存在关联。

结论

家中有唐氏综合征的兄弟姐妹并不必然导致适应不良。与仅考虑组别相比,研究家庭内部过程似乎在识别有风险的儿童方面更有用。

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