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胎儿酒精谱系障碍患儿的照料者和家庭生活质量。

Caregiver and family quality of life for children with fetal alcohol spectrum disorder.

机构信息

Child Health Research Centre, The University of Queensland, South Brisbane, QLD, Australia.

Child Health Research Centre, The University of Queensland, South Brisbane, QLD, Australia; School of Biomedical Sciences, The University of Queensland, St Lucia, QLD, Australia.

出版信息

Res Dev Disabil. 2019 Nov;94:103478. doi: 10.1016/j.ridd.2019.103478. Epub 2019 Aug 30.

Abstract

BACKGROUND

Fetal alcohol spectrum disorder (FASD) is a common neurodevelopmental condition. Given that individuals with FASD can experience lifelong challenges, one field of research that could be applicable is the paediatric chronic health literature.

AIMS

The aim of the current study was to investigate the utility of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module, designed to measure the impact of paediatric chronic health conditions on caregivers and families.

METHODS AND PROCEDURES

109 caregivers of children with FASD completed an online survey that assessed a range of areas including, caregiver and family quality of life, caregiver mental health and child behaviour.

OUTCOMES AND RESULTS

Overall, caregivers reported the areas most impacted on the PedsQL module were Family Daily Activities and Worry. Caregiver's country of residence, mental health, child gender, and level of child behaviour problems were found to be predictors of caregiver and family quality of life.

CONCLUSIONS AND IMPLICATIONS

The results demonstrate that there are multidimensional challenges for caregivers and families. These findings have important implications for policy and practice regarding the provision of supports and services for children with FASD and their families.

摘要

背景

胎儿酒精谱系障碍(FASD)是一种常见的神经发育障碍。鉴于患有 FASD 的个体可能会面临终身挑战,因此可以应用儿科慢性健康文献的研究领域之一。

目的

本研究旨在调查儿科生活质量量表(PedsQL)家庭影响模块的效用,该模块旨在衡量儿科慢性健康状况对照顾者和家庭的影响。

方法和程序

109 名患有 FASD 的儿童的照顾者完成了一项在线调查,该调查评估了包括照顾者和家庭生活质量、照顾者心理健康和儿童行为在内的多个领域。

结果

总体而言,照顾者报告说,受 PedsQL 模块影响最大的领域是家庭日常活动和担忧。照顾者的居住国家/地区、心理健康状况、孩子的性别以及孩子行为问题的严重程度被发现是照顾者和家庭生活质量的预测因素。

结论和意义

研究结果表明,照顾者和家庭面临着多方面的挑战。这些发现对为患有 FASD 的儿童及其家庭提供支持和服务的政策和实践具有重要意义。

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