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本文引用的文献

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Measurement invariance of the Positive Gains Scale in families of children with and without disabilities.有残疾和无残疾儿童家庭中积极收获量表的测量不变性。
Res Dev Disabil. 2020 Aug;103:103662. doi: 10.1016/j.ridd.2020.103662. Epub 2020 May 18.
2
1000 Families Study, a UK multiwave cohort investigating the well-being of families of children with intellectual disabilities: cohort profile.1000 家研究,英国一项多波队列研究,调查智障儿童家庭的幸福感:队列特征。
BMJ Open. 2020 Feb 12;10(2):e032919. doi: 10.1136/bmjopen-2019-032919.
3
Using Bayesian methodology to explore the profile of mental health and well-being in 646 mothers of children with 13 rare genetic syndromes in relation to mothers of children with autism.采用贝叶斯方法探讨 646 名儿童患有 13 种罕见遗传性综合征的母亲与自闭症儿童母亲的心理健康和幸福感特征。
Orphanet J Rare Dis. 2018 Oct 25;13(1):185. doi: 10.1186/s13023-018-0924-1.
4
The Down syndrome advantage: it depends on what and when you measure.唐氏综合征的优势:这取决于你测量的内容和时间。
Am J Intellect Dev Disabil. 2014 Sep;119(5):389-404. doi: 10.1352/1944-7558-119.5.389.
5
Assessing the validity of single-item life satisfaction measures: results from three large samples.评估单项目生活满意度量表的效度:来自三个大样本的结果。
Qual Life Res. 2014 Dec;23(10):2809-18. doi: 10.1007/s11136-014-0726-4. Epub 2014 Jun 3.
6
Longitudinal perspectives of child positive impact on families: relationship to disability and culture.儿童对家庭的积极影响的纵向视角:与残疾和文化的关系。
Am J Intellect Dev Disabil. 2013 Mar;118(2):141-55. doi: 10.1352/1944-7558-118.2.141.
7
Parenting-related stress and psychological distress in mothers of toddlers with autism spectrum disorders.患有自闭症谱系障碍幼儿的母亲在育儿方面的压力和心理困扰
Brain Dev. 2013 Feb;35(2):133-8. doi: 10.1016/j.braindev.2012.10.004. Epub 2012 Nov 10.
8
The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder.父母压力的影响:比较自闭症谱系障碍儿童的父母和没有自闭症谱系障碍儿童的父母的父母压力体验的研究的荟萃分析。
J Autism Dev Disord. 2013 Mar;43(3):629-42. doi: 10.1007/s10803-012-1604-y.
9
Twenty-year trends in the prevalence of Down syndrome and other trisomies in Europe: impact of maternal age and prenatal screening.二十年来欧洲唐氏综合征及其他三体综合征的流行趋势:与母亲年龄和产前筛查的关系。
Eur J Hum Genet. 2013 Jan;21(1):27-33. doi: 10.1038/ejhg.2012.94. Epub 2012 Jun 20.
10
Mother Positivity and Family Adjustment in Households with Children with a Serious Disability.重度残疾儿童家庭中母亲的积极性与家庭适应情况
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未能复制唐氏综合征对产妇健康的显著优势。

Failure to replicate a robust Down syndrome advantage for maternal well-being.

机构信息

CEDAR, University of Warwick, Coventry, UK.

Centre for Developmental Psychiatry and Psychology, Department of Psychiatry, School of Clinical Sciences at Monash Health, Monash University, Melbourne, Victoria, Australia.

出版信息

J Intellect Disabil Res. 2021 Mar;65(3):262-271. doi: 10.1111/jir.12808. Epub 2021 Jan 6.

DOI:10.1111/jir.12808
PMID:33404135
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8049030/
Abstract

BACKGROUND

Family members caring for children with intellectual disability (ID) routinely report heightened levels of psychological distress. However, families of children with Down syndrome typically report better outcomes (known as the Down syndrome advantage). We examined whether the Down syndrome advantage would be present for maternal psychological distress, impact of caregiving, life satisfaction and perceived positive impact of the child with ID when controlling for external variables.

METHODS

Mothers of children with Down syndrome (n = 111) and mothers of children with ID of mixed aetiologies (n = 196) completed measures about their own mental health, perceived impact of caregiving, life satisfaction and perceived positive impact of their child on themselves and the family unit.

RESULTS

A series of group comparisons revealed small to moderate differences supporting the presence of a putative Down syndrome advantage in relation to personal maternal well-being outcomes. However, when child-related characteristics and external variables were controlled, the Down syndrome advantage was no longer present, with reduced, small effect sizes observed for all maternal outcomes.

CONCLUSIONS

Initial group differences in psychological distress and life satisfaction were largely associated with family poverty, indicating that the Down syndrome advantage may be less robust than previously thought. Future research should seek to move beyond examining the existence of the putative Down syndrome advantage and focus on how families of children with Down syndrome experience family life, including longitudinal research exploring responses to life cycle and transition challenges.

摘要

背景

照顾智障儿童(ID)的家庭成员经常报告心理困扰程度较高。然而,唐氏综合征儿童的家庭通常报告更好的结果(称为唐氏综合征优势)。我们研究了在控制外部变量的情况下,唐氏综合征优势是否会对母亲的心理困扰、照顾的影响、生活满意度和对智障儿童的积极影响产生影响。

方法

唐氏综合征儿童的母亲(n=111)和混合病因 ID 儿童的母亲(n=196)完成了关于自己心理健康、照顾影响感知、生活满意度和对自己和家庭单位的孩子积极影响的感知的测量。

结果

一系列组间比较显示,存在支持个人母亲幸福感结果中存在假定唐氏综合征优势的小到中等差异。然而,当控制儿童相关特征和外部变量时,唐氏综合征优势不再存在,所有母亲结果的效应大小均减小,为小效应。

结论

心理困扰和生活满意度的初始组间差异主要与家庭贫困有关,表明唐氏综合征优势可能不如以前认为的那么强大。未来的研究应该超越检查假定的唐氏综合征优势的存在,并关注唐氏综合征儿童的家庭如何体验家庭生活,包括探索对生命周期和过渡挑战的反应的纵向研究。