马拉维布兰太尔两家诊所中脑瘫患儿主要照顾者的生活质量。
Quality of life of primary caregivers of children living with cerebral palsy at two clinics in Blantyre, Malawi.
机构信息
Department of Rehabilitation Sciences, Kamuzu University of Health Sciences.
School of Public Health and Family Medicine, Kamuzu University of Health Sciences.
出版信息
Malawi Med J. 2022 Sep;34(3):176-183. doi: 10.4314/mmj.v34i3.6.
INTRODUCTION
In Malawi, Primary Caregivers (PCGs) of children living with Cerebral Palsy report challenges such as physical strain and lack of resources that affect care giving. Although such experiences affect the PCGs' Quality of Life (QoL), there is paucity of data for Malawi. Understanding their QoL would inform establishment of holistic intervention(s) tailored to meet their needs. Therefore, the purposes of this study were to determine QoL of PCGs of the children who were receiving rehabilitation at Queen Elizabeth Central Hospital (QECH) and Feed the Children (FtC), to identify PCG's and children's socio-demographic factors that may attribute to the perceived QoL, and to compare the PCGs' QoL between the sites.
METHODS
A cross-sectional study was conducted from January to April 2019 on 142 PCGs of children aged between 2 and 18 years of age. All PCGs who were employed for the child-care, or had a chronic sickness were excluded. QoL was assessed using the World Health Organization Brief questionnaire, with a cut-off point of <60% for poor QoL. The severity of children's impairments was assessed using Gross Motor Function Classification System. Descriptive and inferential statistics were conducted to analyze the data. The PCGs' age, sex, marital status and level of education, and child's severity of impairment were compared with QoL.
RESULTS
The majority of PCGs (61.30%) had poor QoL, and there was no significant difference in overall QoL of the PCGs between the sites (p<0.31). The PCGs at QECH had significantly higher physical domain mean scores than at FtC (U=1906, p<0.01). The overall QoL differed significantly across the marital statuses of the PCGs (p<0.03).
CONCLUSION
The study has established that most PCGs at both sites possess poor QoL. However, there is need to investigate how the rehabilitation institutions and workers influence the QoL of the PCGs within and between the facilities.
简介
在马拉维，照顾脑瘫儿童的主要照顾者（PCG）报告称，他们面临身体疲劳和资源匮乏等挑战，这些挑战影响了他们的照顾工作。尽管这些经历影响了 PCG 的生活质量（QoL），但马拉维缺乏相关数据。了解他们的 QoL 将为制定满足他们需求的整体干预措施提供信息。因此，本研究的目的是确定在伊丽莎白女王中央医院（QECH）和“喂养儿童”（FtC）接受康复治疗的脑瘫儿童的 PCG 的生活质量（QoL），确定可能影响 PCG 感知 QoL 的 PCG 和儿童的社会人口学因素，并比较两个地点的 PCG 的 QoL。
方法
本研究是一项在 2019 年 1 月至 4 月间进行的横断面研究，对象为年龄在 2 至 18 岁之间的 142 名脑瘫儿童的主要照顾者。所有受雇照顾孩子或患有慢性疾病的主要照顾者均被排除在外。使用世界卫生组织简短问卷评估 QoL，将<60%的得分作为生活质量较差的临界值。使用粗大运动功能分类系统评估儿童的损伤严重程度。采用描述性和推断性统计方法对数据进行分析。比较了主要照顾者的年龄、性别、婚姻状况和受教育程度，以及儿童损伤的严重程度与 QoL。
结果
大多数主要照顾者（61.30%）生活质量较差，两个地点的主要照顾者整体 QoL 无显著差异（p<0.31）。QECH 的主要照顾者的生理领域平均得分明显高于 FtC（U=1906，p<0.01）。主要照顾者的整体 QoL 在婚姻状况上存在显著差异（p<0.03）。
结论
本研究表明，两个地点的大多数主要照顾者生活质量较差。然而，有必要调查康复机构和工作人员如何在设施内和设施之间影响主要照顾者的 QoL。
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