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有特殊医疗需求儿童的母亲:探讨照料者负担、生活质量和适应力。

Mothers of Children With Special Health Care Needs: Exploring Caregiver Burden, Quality of Life, and Resiliency.

出版信息

J Pediatr Health Care. 2023 Nov-Dec;37(6):643-651. doi: 10.1016/j.pedhc.2023.06.003. Epub 2023 Jul 28.

Abstract

INTRODUCTION

This study aimed to explore caregiver burden, quality of life (QOL), and resilience in mothers of children with special health care needs (CSHCN), compare differences between mothers of CSHCN and healthy children, and differences between mothers of CSHCN on the basis of child severity.

METHOD

Mothers (n = 106) with a child aged < 18 years were recruited. A cross-sectional design was used. Measures included the Caregiver Burden Inventory, Quality of Life Scale, and Brief Resilience Inventory. Pearson point-biserial correlations and independent t-tests were used to compare group differences.

RESULTS

Caregiver burden and QOL were negatively correlated (p < .001). Mothers of CSHCN had greater burden (p < .001) and poorer QOL (p = .006). Child severity increased caregiver burden time (p = .003).

DISCUSSION

Study findings expound on research indicating mothers of CSHCN experience greater burden and poorer QOL than their peers, and child severity increases burden via time commitment. Health care providers should assess risk factors for poor QOL and caregiver burden and provide appropriate resources.

摘要

介绍

本研究旨在探讨有特殊医疗需求儿童(CSHCN)母亲的照顾者负担、生活质量(QOL)和韧性,比较 CSHCN 母亲与健康儿童之间的差异,以及根据儿童严重程度的 CSHCN 母亲之间的差异。

方法

招募了 106 名年龄<18 岁的儿童的母亲。采用横断面设计。测量包括照顾者负担量表、生活质量量表和简要韧性量表。使用 Pearson 点双列相关和独立 t 检验比较组间差异。

结果

照顾者负担和 QOL 呈负相关(p<0.001)。CSHCN 母亲的负担(p<0.001)和 QOL 较差(p=0.006)。儿童严重程度增加了照顾者的负担时间(p=0.003)。

讨论

研究结果阐述了研究表明,与同龄人相比,CSHCN 的母亲承受更大的负担和较差的生活质量,并且儿童的严重程度通过时间投入增加了负担。医疗保健提供者应评估生活质量和照顾者负担差的风险因素,并提供适当的资源。

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