复杂先天性心脏病姑息术后患儿家庭管理水平类型及其影响因素研究  

Family Management Styles and Associated Factors for Children after Palliative Surgery for Complex Congenital Heart

作　　者：夏毓娴 傅丽娟[1] 罗雯懿[1] 沈笑怡 倪平 XIA Yuxian;FU Lijuan;LUO Wenyi;SHEN Xiaoyi;NI Ping(Department of Cardio-thoracic Surgery,Shanghai Children's Medical Center,Shanghai Jiao Tong University School of Medicine,Shanghai 200127,China)

机构地区：[1]上海交通大学医学院附属上海儿童医学中心心胸外科,上海市200127

出　　处：《中国全科医学》2023年第16期1995-2003,共9页Chinese General Practice

基　　金：上海市卫生健康委员会卫生行业临床研究专项立项项目(20194Y0479)--单心室术后患儿家庭管理方式及干预效果研究

摘　　要：背景复杂先天性心脏病(CCHD)姑息术后患儿的家庭管理水平直接影响患儿的预后,但目前我国CCHD姑息术后患儿的家庭管理水平仍不理想。国外学者对家庭管理模式框架(FMSF)应用于CCHD姑息术后患儿家庭管理的效果进行研究,取得了一定进展,国内相关研究尚处于起步阶段。目的分析CCHD姑息术后患儿的家庭管理水平类型及其影响因素。方法本研究为横断面调查研究。于2021年5—9月,采用方便抽样法,选取2016-01-01至2021-08-31于上海交通大学医学院附属上海儿童医学中心接受CCHD姑息术的245例患儿及其家庭为研究对象,采用中文版家庭管理量表(FaMM)、中文版家庭功能评定量表(FAD)、中文版亲职压力指标简表(PSI-SF)、社会经济地位(SES)指数对患儿主要照顾者(父亲或母亲)进行调查。同时在对患儿身高、体质量进行测量的基础上评估其营养不良发生情况,并对其心功能进行评价。根据245个家庭中文版FaMM各维度得分,采用聚类分析法,对CCHD姑息术后患儿的家庭管理水平进行分类;采用多元Logistic回归分析CCHD姑息术后患儿家庭管理水平类型的影响因素。结果聚类分析结果显示,CCHD姑息术后患儿的家庭管理水平可分为4种类型,分别为正常视角与协作型〔28.6%(70/245)〕、混乱与紧张型〔11.0%(27/245)〕、自信与担忧型〔21.6%(53/245)〕及放任型〔38.8%(95/245)〕。多元Logistic回归分析结果显示:与混乱与紧张型、自信与担忧型、放任型组相比,患儿主要照顾者中文版PSI-SF总得分越高,患儿家庭管理水平越易呈正常视角与协作型;家庭中文版FAD总得分越高,患儿家庭管理水平越不易呈正常视角与协作型(P<0.05)。同时与放任型组相比,男性患儿的家庭管理水平易呈正常视角与协作型;对于接受本次调查至最近一次接受姑息术的时间<1年的患儿,以及接受本次调查时年龄越大的患儿,其家庭管理水平(Background The family management style directly affects the prognosis of children with complex congenital heart disease(CCHD)after palliative surgery.But it is still unsatisfactory for these children in China.Research on family management of these children based on the Family Management Style Framework in foreign countries has achieved certain achievements while domestic research is still in its infancy.Objective To explore the family management style and its factors in children with CCHD after palliative surgery.Methods This study is a cross-sectional study.From May to September 2021,a total of 245 children after palliative surgery for CCHD and their families were selected from Shanghai Children's Medical Center,Shanghai Jiao Tong University School of Medicine from January 1,2016 to August 31,2021 by convenient sampling.The following questionnaires were used for collecting information from the major caregiver of the children(father or mother):the Chinese version of the Family Management Measure(FaMM-C),the Chinese version of the Family Assessment Device(FAD-C),the Chinese version of the Parenting Stress Index Short Form(PSI-SF-C),and the socioeconomic status index.The children's height and body weight were measured to assess the prevalence of malnutrition,and their cardiac functions were also evaluated.The family management style of the children's families was classified by clustering the score of each dimension of FaMM-C using clustering analysis.Multinomial Logistic regression was used to analyze the factors associated with different types of family management style.Results Four types of family management style were identified:the normal-perspective and collaborative〔28.6%(70/245)〕,the chaotic and strenuous〔11.0%(27/245)〕,the confident and concerning〔21.6%(53/245)〕and the laissez faire〔38.8%(95/245)〕.When the normal-perspective and collaborative group compared to the other three groups:the higher the score of the PSI-SF-C,the more inclined the family management was to the normal-perspective and

关 键 词：先天性心脏病 姑息性手术 儿童 家庭管理水平 聚类分析 影响因素分析 

分 类 号：R541[医药卫生—心血管疾病]