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撒哈拉以南地区先天性心脏病患儿母亲的健康相关生活质量:横断面比较研究

Health-related quality of life of mothers of children with congenital heart disease in a sub-Saharan setting: cross-sectional comparative study.

作者信息

Sileshi Lidia, Tefera Endale

机构信息

Department of Pediatrics & Child Health, School of Medicine, Wolaita Sodo University, Wolaita Sodo, Ethiopia.

Department of Pediatrics & Child Health, Cardiology Division, School of Medicine, Addis Ababa University, P.O.Box 1768, Addis Ababa, Ethiopia.

出版信息

BMC Res Notes. 2017 Oct 26;10(1):513. doi: 10.1186/s13104-017-2856-6.

Abstract

BACKGROUND

While the Health Related Quality of Life of the children with congenital heart defects is primarily affected, caring for a child with birth defect has an impact on the family's quality of life as well. Understanding the level of quality of life of the parents, which is likely to vary in different cultural settings, beliefs and parental educational status may help to implement educational programs and other interventional measures that may improve the HRQOL of parents of such children. This cross-sectional comparative study reports the health-related quality of life of mothers of children with congenital heart diseases in a sub-Saharan setting.

RESULTS

Mean age of the mothers in the study group was 32.2 ± 7.1 years where as that of the control group was 30.5 ± 6.5 years (p = .054). One hundred-four children had congenital cardiac lesions classified as mild to moderate while 31 patients had severe lesions. On average, mothers in the study group showed poor performance on the Short Form-36 (SF-36) with statistically significant differences on all sub-scales including general health perception, physical functioning, role physical, role emotional, social functioning, bodily pain, vitality and mental health. Severity of the congenital heart defect was not associated with statistically significant difference in the health-related quality of life of the mothers.

CONCLUSIONS

Mothers of children with congenital heart disease in our study have significantly lower quality of life in all domains of SF-36 compared to the control group. Planning and devising a strategy to support these mothers may need to be part of management and clinical care of children with congenital heart diseases.

摘要

背景

虽然先天性心脏缺陷儿童的健康相关生活质量受到主要影响,但照顾患有出生缺陷的儿童也会对家庭生活质量产生影响。了解父母的生活质量水平,其可能因不同文化背景、信仰和父母教育程度而有所不同,这可能有助于实施教育计划和其他干预措施,从而改善此类儿童父母的健康相关生活质量。这项横断面比较研究报告了撒哈拉以南地区先天性心脏病儿童母亲的健康相关生活质量。

结果

研究组母亲的平均年龄为32.2±7.1岁,而对照组为30.5±6.5岁(p = 0.054)。104名儿童患有分类为轻度至中度的先天性心脏病变,而31名患者患有严重病变。平均而言,研究组母亲在简短健康调查问卷(SF-36)上表现不佳,在所有子量表上均有统计学显著差异,包括总体健康感知、身体功能、角色身体、角色情感、社会功能、身体疼痛、活力和心理健康。先天性心脏缺陷的严重程度与母亲的健康相关生活质量的统计学显著差异无关。

结论

与对照组相比,我们研究中先天性心脏病儿童的母亲在SF-36的所有领域的生活质量显著较低。制定并设计一项支持这些母亲的策略可能需要成为先天性心脏病儿童管理和临床护理的一部分。

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