Family adaptation in families of individuals with Down syndrome from 12 countries

IF 2.8 3区 医学 Q2 GENETICS & HEREDITY American Journal of Medical Genetics Part C: Seminars in Medical Genetics Pub Date : 2023-11-06 DOI:10.1002/ajmg.c.32075
Marcia Van Riper, George J. Knafl, Kathleen A. Knafl, Maria do Céu Barbieri-Figueiredo, Sivia Barnoy, Maria Caples, Hyunkyung Choi, Beth Cosgrove, Elysângela Dittz Duarte, Junko Honda, Elena Marta, Supapak Phetrasuwan, Sara Alfieri, Margareth Angelo, Wannee Deoisres, Louise Fleming, Aline Soares dos Santos, Maria João Rocha da Silva
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Abstract

Our current understanding of adaptation in families of individuals with Down syndrome (DS) is based primarily on findings from studies focused on participants from a single country. Guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation, the purpose of this cross-country investigation, which is part of a larger, mixed methods study, was twofold: (1) to compare family adaptation in 12 countries, and (2) to examine the relationships between family variables and family adaptation. The focus of this study is data collected in the 12 countries where at least 30 parents completed the survey. Descriptive statistics were generated, and mean family adaptation was modeled in terms of each predictor independently, controlling for an effect on covariates. A parsimonious composite model for mean family adaptation was adaptively generated. While there were cross-country differences, standardized family adaptation mean scores fell within the average range for all 12 countries. Key components of the guiding framework (i.e., family demands, family appraisal, family resources, and family problem-solving communication) were important predictors of family adaptation. More cross-country studies, as well as longitudinal studies, are needed to fully understand how culture and social determinants of health influence family adaptation in families of individuals with DS.

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来自12个国家的唐氏综合症患者家庭的家庭适应。
我们目前对唐氏综合症(DS)患者家庭适应的理解主要基于针对单个国家参与者的研究结果。在家庭压力、适应和适应的弹性模型的指导下,这项跨国调查是一项更大的混合方法研究的一部分,其目的有两个:(1)比较12个国家的家庭适应;(2)研究家庭变量与家庭适应之间的关系。这项研究的重点是在12个国家收集的数据,这些国家至少有30名家长完成了调查。生成描述性统计数据,并根据每个预测因子对平均家庭适应进行独立建模,控制对协变量的影响。自适应地生成了平均家庭适应的简约复合模型。虽然存在跨国差异,但所有12个国家的标准化家庭适应平均得分都在平均范围内。指导框架的关键组成部分(即家庭需求、家庭评估、家庭资源和解决家庭问题的沟通)是家庭适应的重要预测因素。需要更多的跨国研究和纵向研究,以充分了解文化和健康的社会决定因素如何影响DS患者家庭的家庭适应。
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来源期刊
CiteScore
7.00
自引率
0.00%
发文量
42
审稿时长
>12 weeks
期刊介绍: Seminars in Medical Genetics, Part C of the American Journal of Medical Genetics (AJMG) , serves as both an educational resource and review forum, providing critical, in-depth retrospectives for students, practitioners, and associated professionals working in fields of human and medical genetics. Each issue is guest edited by a researcher in a featured area of genetics, offering a collection of thematic reviews from specialists around the world. Seminars in Medical Genetics publishes four times per year.
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