先天性心脏病患儿家长感知脆弱水平和育儿压力及相关影响因素研究

Study on perceived vulnerability and parenting stress among parents of children with congenital heart disease and factors associated with it

目的通过探索先天性心脏病(简称先心病)儿童家长感知脆弱水平和育儿压力及相关影响因素,为先心病患儿的家庭养育提供科学的理论指导,并为今后干预性研究提供理论依据。方法采用病例对照设计,选取2021—2022年在江苏省昆山市及苏州市某儿童医院随访到的先心病患儿家长为病例组,并按照患儿有无进行先心病手术分为未手术组和手术组。同时,选取2021—2022年在江苏省昆山市某社区卫生服务中心体检的同年龄段无先心病儿童家长作为对照组。采用中文版父母感知脆弱程度量表和简式育儿压力问卷评估3组儿童家长感知脆弱水平及育儿压力,并采用多因素logistic回归模型分析儿童家长感知脆弱水平和育儿压力的影响因素。结果本研究涉及对照组312例、病例组中的未手术组65例、手术组167例。对照组、未手术组和手术组中分别有3.85%、9.23%和20.35%的儿童家长脆弱感知水平较高(得分≥10分),差异有统计学意义(χ^(2)=34.32,P<0.001)。研究结果显示,父亲年龄低、家庭年收入低、联合家庭(与祖父母同住),以及低出生体重是导致儿童家长感知脆弱水平高的影响因素(均P<0.05)。对照组、未手术组和手术组中分别有24.36%、18.46%和33.53%的儿童家长存在养育压力(育儿压力问卷得分≥85分),差异有统计学意义(χ^(2)=6.09,P=0.047)。手术组儿童家长的育儿压力总分、育儿愁苦得分和困难儿童得分均高于对照组和未手术组,差异均有统计学意义(均P<0.05)。在控制了年龄、填报人等混杂因素的影响下,儿童家长育儿压力总分升高与全职父亲、儿童年龄大、先心病家族史、带养人是父母、带养人文化程度低、父亲每日陪伴时间<2 h有关(均P<0.05)。结论先心病患儿家长的养育压力及自身情绪存在一定程度的变化,医护人员不仅要关注先心病患儿的疾病和身心健康情况,还要了解患儿家长在照顾患儿过程中的感知脆弱水平和养育压力,并提供个体化的应对方式和干预措施,培养家长用良好的心态来面对患儿的治疗和康复,以达到患儿与父母共同健康的目的。

Objective To explore the level of perceived vulnerability and child-rearing pressure among parents of children with congenital heart disease and factors associated with it,so as to provide scientific theoretical guidance for family rearing of these children and provide evidence for future intervention research.Methods Case-control design was used to recruit parents of children with congenital heart disease who were followed up in a children’s hospital in Kunshan and Suzhou,Jiangsu Province from 2021 to 2022 as case group.They were divided into non-operation group and operation group based on their children’s heart operational history.At the same time,parents of children without congenital heart disease in the same age group who underwent physical examination in a community health service center in Kunshan,Jiangsu Province from 2021 to 2022 were recruited as control group.The Chinese version of parents’perceived vulnerability scale and the simplified parenting stress questionnaire were used to evaluate the level of perceived vulnerability and parenting stress of the 3 groups,and factors associated wih it were analyzed by logistic regression model.Results There were 312 cases in the control group,65 cases without operation and 167 cases with operation in the case group.About 3.85%in control group,9.23%in case group without operation and 20.35%in case group with operation had higher level of vulnerability perception(score≥10 points),and the difference was statistically significant(χ^(2)=34.32,P<0.001).Study results showed that low age father,low annual household income,joint household(living with grandparents),and low birth weight were factors associated with high level of perceived vulnerability among parents.About 24.36%,18.46%and 33.53%in the control group,the non-operation group and the operation group had parenting stress(parenting stress questionnaire score≥85),respectively,and the difference was statistically significant(χ^(2)=6.09,P=0.047).The score of total parenting stress,parenting distress and children with difficulties among parents in the opertation group were higher than those among parents in the control group and the non-operation group(all P<0.05).After confounding factors such as age and preparer were controlled,the increase in the total score of parenting stress was associated with full-time father,older age of the child,family history of congenital heart disease,parents being surrogate caregiver,low education level of the surrogate caregiver,and father’s accompanying time<2 h/day(all P<0.05).Conclusion Parenting pressure and emotions among parents of children with congenital heart disease are unstable.Medical staff should not only pay attention to the disease and physical and mental health of children with congenital heart disease,but also understand the perceived vulnerability and parenting pressure among parents in the process of taking care of them,and provide individualized coping style and intervention measures to train parents to face children’s treatment and rehabilitatio from positive perspective so as to achieve the purpose of common health of children and parents.