复杂先天性心脏病姑息术后照顾者的疾病管理困难现状及其影响因素

Status Quo of Disease Management Difficulties Among Caregivers of Children After Complex Congenital Heart Disease Palliative Surgery and Its Influencing Factors

目的探索复杂先天性心脏病患儿姑息术后照顾者的疾病管理困难现状,分析影响其疾病管理困难的因素。方法便利抽样选择245例于某儿童医学中心实施过姑息术的复杂先天性心脏病患儿的主要照顾者,采用家庭管理量表(family management measure,FaMM)中疾病管理困难分量表和家庭功能评定表(family assessment device,FAD)对其疾病管理困难状况进行调查,分析影响其疾病管理困难的因素。结果本组FaMM平均得分为(41.67±10.06)分,FAD平均分值为(2.32±0.36)分;回归分析显示:患儿的手术年龄大、手术至随访的时间<1年、心功能分级高、FAD中照顾者的角色和总的功能两个维度的分值是影响疾病管理困难的主要因素(均P<0.05)。结论复杂先天性心脏病姑息术后照顾者感受到的疾病管理困难程度较高,手术年龄大、术后1年内、术后心功能IV级的患儿家庭更甚;医护人员应给予针对性的健康教育支持和定期随访评估,以提高照顾者对患儿疾病的管理能力。

Objective To explore the status quo of disease management difficulties among caregivers of children after complex congenital heart disease palliative surgery and analyze the influencing factors of disease management difficulties.Methods Convenience sampling method was used to select 245 primary caregivers of children who received complex congenital heart disease palliative surgery in a children’s medical center.The disease management difficulty subscale of Family Management Measure(FaMM)and Family Assessment Device(FAD)were adopted to investigate disease management difficulties and analyze the influencing factors.Results The average score of FaMM was(41.67±10.06)and the average score of FAD was(2.32±0.36).Regression analysis showed that the older surgical age of children,follow-up time after surgery within one year,high cardiac function grade,the scores of role and total function scales of FAD were the main factors that affected the disease management difficulties(all P<0.05).Conclusions Caregivers of children after complex congenital heart disease palliative surgery report high level of perceived disease management difficulties.Those families who care for the children with older surgical age,receiving surgery within one year,and at cardiac function grade IV after surgery may encounter more difficulties.Healthcare professionals should provide targeted health education support and regular follow-up assessment,so as to improve caregivers’ability to manage the children’s diseases.