患有天使综合征或普拉德-威利综合征儿童的家庭中母亲的育儿压力。

Maternal parenting stress in families with a child with Angelman syndrome or Prader-Willi syndrome.

作者信息

Wulffaert Josette, Scholte Evert M, Van Berckelaer-Onnes Ina A

机构信息

Department of Clinical Child and Adolescent Studies, Leiden University, the Netherlands.

出版信息

J Intellect Dev Disabil. 2010 Sep;35(3):165-74. doi: 10.3109/13668250.2010.499101.

DOI:10.3109/13668250.2010.499101

PMID:20809878

Abstract

BACKGROUND

Parenting stress was investigated in mothers with a child with Angelman syndrome (AS) or Prader-Willi syndrome (PWS), which are genetically related.

METHOD

Mothers of 24 children with AS and 23 children with PWS (2-12 years) completed the Nijmegen Parenting Stress Index-Short, Developmental Behaviour Checklist, and Vineland Screener 0-12.

RESULTS

Parenting stress was high for 58% of AS and 26% of PWS cases. For both syndromes, no relationship existed with the child's gender, age, or behavioural problems. In PWS there was no effect on level of functioning. Overall, more mothers with a child with AS perceived high parenting stress. When children showed low levels of behavioural problems this difference was contained. However, when children exhibited severe behavioural problems, parenting stress was the same for both syndromes.

CONCLUSION

In AS professional family support is essential, since parenting is stressful for many mothers. In PWS, this is especially the case when behavioural problems are present.

摘要

背景

对患有天使综合征（AS）或普拉德-威利综合征（PWS）（二者存在基因关联）患儿的母亲的育儿压力进行了调查。

方法

24名患有AS的患儿和23名患有PWS的患儿（年龄在2至12岁之间）的母亲完成了奈梅亨育儿压力指数简表、发育行为检查表以及0至12岁韦氏儿童智力量表。

结果

58%的AS患儿病例和26%的PWS患儿病例的育儿压力较高。对于这两种综合征，育儿压力与孩子的性别、年龄或行为问题均无关联。在PWS中，其对功能水平没有影响。总体而言，更多患有AS患儿的母亲感受到较高的育儿压力。当孩子行为问题水平较低时，这种差异有所收敛。然而，当孩子表现出严重行为问题时，两种综合征的育儿压力相同。