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神经发育障碍学龄儿童照料者的负担:对以家庭为中心的护理的启示

Caregivers' Burden of School-Aged Children with Neurodevelopmental Disorders: Implications for Family-Centred Care.

作者信息

Purpura Giulia, Tagliabue Luca, Petri Stefania, Cerroni Francesco, Mazzarini Andrea, Nacinovich Renata

机构信息

School of Medicine and Surgery, University of Milano Bicocca, 20900 Monza, Italy.

Child and Adolescent Health Department, S. Gerardo Hospital, ASST of Monza, 20900 Monza, Italy.

出版信息

Brain Sci. 2021 Jun 30;11(7):875. doi: 10.3390/brainsci11070875.

Abstract

Caregivers of children with neurodevelopmental disorders play a central role during the rehabilitation and education processes, but they have an increasing risk of psychosocial problems even if the literature is not so agreed upon the specific and predisposing factors to that. The aim of this study was to examine possibly differences of burden levels in an Italian sample of principal caregivers of children with different kinds of neurodevelopmental disorders and to investigate the possible links between some clinical and sociodemographic variables and the levels of caregiver's burden. 105 caregivers of school-aged children with neurodevelopmental disorders were included in the study and completed three online questionnaires (General Questionnaire, Caregiver Burden Inventory, Zarit Caregiver Burden Scale). Results highlighted that about the half of caregivers show from moderate to high levels of stress, but parents of children with Autism Spectrum Disorder and Intellectual Disability show greater difficulties than parents of children with Attention-Deficit Hyperactivity Disorder, Language and/or Learning Disorder, and Developmental Coordination Disorder. Moreover, it was evident a negative correlation between the burden levels and the age of children, but also a direct correlation between the burden levels and the weekly hours of rehabilitation. These findings show that severity of caregiver's burden is dependent by the type of neurodevelopmental disorder and suggest that an ecological and family-centred approach is necessary to guarantee the life health developmental course of these children.

摘要

神经发育障碍儿童的照料者在康复和教育过程中发挥着核心作用,但即便文献对于导致照料者出现心理社会问题的具体因素和诱发因素尚无定论,他们面临此类问题的风险却在不断增加。本研究旨在调查意大利不同类型神经发育障碍儿童的主要照料者样本中负担水平可能存在的差异,并探究一些临床和社会人口统计学变量与照料者负担水平之间可能存在的联系。105名神经发育障碍学龄儿童的照料者参与了该研究,并完成了三份在线问卷(一般问卷、照料者负担量表、扎里特照料者负担量表)。结果表明,约一半的照料者表现出中度到高度的压力,但自闭症谱系障碍和智力障碍儿童的父母比注意力缺陷多动障碍、语言和/或学习障碍以及发育协调障碍儿童的父母面临更大困难。此外,负担水平与儿童年龄之间存在负相关,负担水平与每周康复时长之间也存在正相关。这些发现表明,照料者负担的严重程度取决于神经发育障碍的类型,并表明有必要采取以生态和家庭为中心的方法来保障这些儿童的生活、健康和发育进程。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/2c2e/8301981/6cfc50596430/brainsci-11-00875-g001.jpg

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