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父母对患有遗传性疾病孩子的家庭功能的认知。

Parents' perceptions of functioning in families having a child with a genetic condition.

作者信息

Knafl Kathleen A, Knafl George J, Gallo Agatha M, Angst Denise

机构信息

Oregon Health & Science University, School of Nursing, Portland, OR, USA.

出版信息

J Genet Couns. 2007 Aug;16(4):481-92. doi: 10.1007/s10897-006-9084-x. Epub 2007 Feb 23.

DOI:10.1007/s10897-006-9084-x
PMID:17318451
Abstract

In a study of families having a child with a genetic condition, patterns of family functioning were identified through cluster analysis of families with two spouses. Patterns were based on both parents' assessments of family satisfaction and hardiness, as measured respectively by the Family APGAR and Family Hardiness Index. The validity and clinical significance of the clusters were supported by demonstrating that cluster membership distinguished between parental reports of their own quality of life and their child's functional status, as measured by the Quality of Life Index and the Functional Status II, respectively. The clusters were non-categorical in the sense that they did not depend on the type of genetic condition. These findings point to the importance of addressing family functioning as part of genetic counseling.

摘要

在一项针对有患遗传病孩子的家庭的研究中,通过对有两名配偶的家庭进行聚类分析,确定了家庭功能模式。这些模式基于父母双方对家庭满意度和坚韧度的评估,分别由家庭APGAR量表和家庭坚韧度指数来衡量。通过证明聚类成员能够区分父母各自报告的生活质量和孩子的功能状态(分别由生活质量指数和功能状态II量表来衡量),支持了这些聚类的有效性和临床意义。这些聚类并非基于遗传病类型,即它们不具有分类性。这些发现表明,将家庭功能作为遗传咨询的一部分来处理非常重要。

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本文引用的文献

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A Review Of Monte Carlo Tests Of Cluster Analysis.聚类分析的蒙特卡罗检验综述
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Parents sharing information with their children about genetic conditions.父母与子女分享有关遗传疾病的信息。
家长对正常化结果和意义的看法。
Res Nurs Health. 2010 Apr;33(2):87-98. doi: 10.1002/nur.20367.
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Communication about carrier testing within hemophilia A families.血友病A家族中携带者检测的沟通。
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