新疆1型糖尿病患儿的家庭照护负担对患儿生存质量的影响:照护能力的中介效应分析  

Relationship between family caregiving burden and quality of life in children with type 1 diabetes mellitus in Xinjiang:exploring the mediating role of family caregiving ability

作　　者：穆扎帕尔·麦麦提阿卜杜拉 陈蕴 雷瑞玲[3] 黄霞 曹瑞 马燕 罗佳欣 郭佳 Muzhapaer·Maimaitiabudula;Chen Yun;Lei Ruiling;Huang Xia;Cao Rui;Ma Yan;Luo Jiaxin;Guo Jia(School of Nursing,Xinjiang Medical University,Urumqi 830000,China;Xinjiang Medical University,Urumqi 830000,China;Fourth Department of Pediatric Internal Medicine,First Affiliated Hospital of Xinjiang Medical University,Urumqi 830000,China;Department of Endocrinology,Children's Hospital of Xinjiang Uygur Autonomous Region,Urumqi 830000,China;Department of Endocrinology,Urumqi Children's Hospital,Urumqi 830000,China;Xiangya School of Nursing,Central South University,Changsha 410013,China)

机构地区：[1]新疆医科大学护理学院,乌鲁木齐830000 [2]新疆医科大学,乌鲁木齐830000 [3]新疆医科大学第一附属医院儿内四科,乌鲁木齐830000 [4]新疆维吾尔自治区儿童医院内分泌科,乌鲁木齐830000 [5]乌鲁木齐儿童医院内分泌科,乌鲁木齐830000 [6]中南大学湘雅护理学院,长沙410013

出　　处：《中华糖尿病杂志》2025年第3期351-359,共9页CHINESE JOURNAL OF DIABETES MELLITUS

基　　金：新疆维吾尔自治区自然科学基金面上项目(2022D01C439);三诺糖尿病公益基金会(2022SD06);国家自然科学基金(72264037)。

摘　　要：目的探讨新疆1型糖尿病(T1DM)患儿的家庭照护负担对其普适性及特异性生存质量的影响,及其是否受到家庭照护能力的中介作用。方法该研究为横断面研究。选取2023年1月至2024年2月在新疆3家三甲医院(新疆医科大学第一附属医院、乌鲁木齐儿童医院以及新疆维吾尔自治区儿童医院)住院或门诊就诊的T1DM患儿及其主要照护者为研究对象,采用现场问卷调查收集患儿的性别、年龄、糖化血红蛋白(HbA1c)、胰岛素注射次数、胰岛素泵使用情况、主要照护者是谁,收集患儿家庭照护者负担和照护能力数据,收集患儿普适性生存质量(包括生理情况、情感状态、社交情况及角色融入4个维度)和特异性生存质量(包括疾病相关症状、治疗依从性、疾病担忧感、沟通与交流4个维度)数据。采用Pearson相关性分析法分析T1DM患儿家庭照护负担、照护能力与患儿生存质量三者之间的关系;构建结构方程模型以验证家庭照护能力在家庭照护负担对患儿普适性及特异性生存质量影响中的中介作用;采用Bootstrap法分别检验家庭照护能力在家庭照护负担和患儿普适性生存质量、特异性生存质量及各维度之间的中介作用。结果共回收有效问卷259份。其中,男性患儿123例(47.49%);患儿年龄为(10.64±3.11)岁;HbA1c达标率17.37%(45/259);53.67%(139/259)的患儿每日注射胰岛素次数≤4次,15.06%(39/259)的患儿每日注射胰岛素次数>4次,31.27%(81/259)的患儿使用胰岛素泵;母亲为主要照顾者的比例为79.92%(207/259)。Pearson相关性分析结果显示,家庭照护负担与特异性生存质量、普适性生存质量、家庭照护能力均呈负相关(r值分别为-0.431、-0.306和-0.311,P均<0.001);家庭照护能力与特异性生存质量、普适性生存质量均呈正相关(r值分别为0.275和0.331,P均<0.001)。HbA1c与家庭照护能力呈负相关(r=-0.137,P=0.028)。家庭照护能力在家庭照护�Objective To investigate the impact of family caregiving burden on the general and disease-specific quality of life in children with type 1 diabetes mellitus(T1DM)and whether it is mediated by family caregiving ability.Methods This was a cross-sectional study.We recruited children with T1DM and their primary caregivers who were treated in three tertiary hospitals(the First Affiliated Hospital of Xinjiang Medical University,Urumqi Children's Hospital and Children's Hospital of Xinjiang Uygur Autonomous Region)in Xinjiang from January 2023 to February 2024.A field paper questionnaire survey method was used to collect sex,age,glycated hemoglobin A 1c(HbA 1c),frequency of insulin injection,use of insulin pump,and who was the primary caregiver of the children,and to collect data on the burden of family caregivers and caregiving ability of the children.Data on general quality of life(including 4 dimensions of physiological condition,emotional state,social condition and role integration)and disease-specific quality of life(including 4 dimensions of disease-related symptoms,treatment compliance,disease worry,communication and communication)were collected.Pearson correlation analysis was used to analyze the relationship between family caregiving burden,family caregiving ability and quality of life of T1DM children.A structural equation model was constructed to verify the mediating role of family caregiving ability in the influence of family caregiving burden on the universal and disease-specific quality of life of children.Bootstrap method was used to examine the mediating effects of family caregiving ability between family caregiving burden and the general quality of life,disease-specific quality of life,as well as various dimensions of the quality of life of children respectively.Results Two hundred and fifty-nine valid questionnaires were collected.Of these,123 were male children(47.49%).The mean age of these children was(10.64±3.11)years.The rate of achieving the standard HbA 1c level was 17.37%(45/259).In addition,5

关 键 词：糖尿病 1型 照护负担 照护能力 生存质量 中介效应 

分 类 号：R725.8[医药卫生—儿科]