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中国先天性肛门直肠畸形患儿父母生活质量与社会支持的关系。

Relationship Between Quality of Life and Social Support in Parents of Children with Congenital Anorectal Malformations in China.

机构信息

Department of Public Health and General Medicine, Anhui University of Chinese Medicine, China.

Department of Pediatric Surgery, Anhui Provincial Children's Hospital, China.

出版信息

J Pediatr Nurs. 2020 Jul-Aug;53:e87-e92. doi: 10.1016/j.pedn.2020.02.037. Epub 2020 Mar 5.

Abstract

PURPOSE

This study aimed to explore the quality of life (QOL) and social support of parents of children with congenital anorectal malformation (ARM), and to examine the relationship between them.

DESIGN AND METHODS

A cross-sectional study was conducted at Anhui Provincial Children's Hospital of China from January to June of 2018. A total of 108 parents participated in this survey. QOL and social support were accessed using the short version of the World Health Organization's Quality of Life Instrument (WHOQOL-BREF) and the Social Support Rate Scale (SSRS), respectively. Analyses were performed with multivariate linear regression and canonical correlation.

RESULTS

The parents' scores in the physical, psychological, and environmental domains were lower than those in the general population in China. Gender, monthly income, combined malformation, objective support, subjective support and utilization of support were the major influencing factors of QOL. A canonical correlation analysis indicated social support was positively correlated with QOL, and subjective support, psychological domain had the largest standardized factor loading in social support and QOL.

CONCLUSIONS

The QOL of parents of ARM patients was not optimistic. More attention needs to be paid to increasing social support for the parents of ARM to enhance their QOL.

PRACTICE IMPLICATIONS

For government, increasing funds and resources to invest in the establishment and improvement of the social support network is necessary. For doctors and nurses, providing better medical and psychological services to patients and their parents is essential.

摘要

目的

本研究旨在探讨先天性肛门直肠畸形(ARM)患儿父母的生活质量(QOL)和社会支持状况,并探讨两者之间的关系。

设计和方法

2018 年 1 月至 6 月在中国安徽省儿童医院进行了一项横断面研究。共有 108 名家长参与了这项调查。采用世界卫生组织生活质量量表(WHOQOL-BREF)简表和社会支持评定量表(SSRS)分别评估 QOL 和社会支持。采用多元线性回归和典型相关分析进行分析。

结果

父母在生理、心理和环境领域的得分均低于中国一般人群。性别、月收入、合并畸形、客观支持、主观支持和支持的利用是 QOL 的主要影响因素。典型相关分析表明,社会支持与 QOL 呈正相关,主观支持、心理领域在社会支持和 QOL 中的标准化因子负荷最大。

结论

ARM 患儿父母的 QOL 不容乐观。需要更多关注增加 ARM 患儿父母的社会支持,以提高他们的 QOL。

实践意义

对于政府而言,需要增加资金和资源投入,以建立和完善社会支持网络。对于医生和护士而言,为患者及其父母提供更好的医疗和心理服务至关重要。

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