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脑瘫患者及其照料者的生活质量:苏丹喀土穆一家康复中心的横断面研究(2014 - 2015年)

Quality of life of cerebral palsy patients and their caregivers: A cross sectional study in a rehabilitation center Khartoum-Sudan (2014 - 2015).

作者信息

Mohammed Fadwa M S, Ali Suad M, Mustafa Mutaz A A

机构信息

Department of Community Medicine, Faculty of Medicine, University of Khartoum, Omdurman, Khartoum, Sudan.

Department of Biochemistry, Faculty of Medicine, University of Khartoum, Omdurman, Khartoum, Sudan.

出版信息

J Neurosci Rural Pract. 2016 Jul-Sep;7(3):355-61. doi: 10.4103/0976-3147.182778.

Abstract

BACKGROUND

Cerebral palsy (CP) is group of disorders characterized by long-term disabilities that affect the quality of life (QoL) of both patients and those caring for them.

OBJECTIVE

The objective of this study was to measure the QoL of CP patients and their caregivers and determine the factors affecting both of them.

METHODS

This was a cross-sectional facility-based study. 65 caregivers of children with CP aged 4-18 years completed a self-structured questionnaire. Descriptives of the samples were displayed, and logistic regression was used in the analysis.

RESULTS

The scores of overall QoL of both children and caregivers were low, however, variations were observed among different domains. Both health-related and sociodemographic factors were found to affect the QoL of children and caregivers. The increase in the degree of disability and presence of complications decreased the children QoL while the availability of health insurance improved it. Whereas the QoL of the caregiver was affected by his/her occupation, the degree of child disability did not affect it.

CONCLUSIONS

This study showed that many feasible changes can be adopted to improve the QoL of CP patients and their caregivers.

摘要

背景

脑瘫(CP)是一组以长期残疾为特征的疾病,会影响患者及其照料者的生活质量(QoL)。

目的

本研究的目的是测量脑瘫患者及其照料者的生活质量,并确定影响他们双方的因素。

方法

这是一项基于机构的横断面研究。65名4至18岁脑瘫患儿的照料者完成了一份自行编制的问卷。展示了样本的描述性数据,并在分析中使用了逻辑回归。

结果

儿童和照料者的总体生活质量得分较低,然而,不同领域存在差异。发现与健康相关的因素和社会人口学因素都会影响儿童和照料者的生活质量。残疾程度的增加和并发症的出现会降低儿童的生活质量,而医疗保险的可获得性则会改善生活质量。而照料者的生活质量受其职业影响,儿童残疾程度对其没有影响。

结论

本研究表明,可以采取许多可行的改变来提高脑瘫患者及其照料者的生活质量。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a2d8/4898102/05a37238fec9/JNRP-7-355-g004.jpg

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