先天性心脏病患儿照顾者负担现状及影响因素

The Level and Influencing Factors of the Burden of Primary Caregiver of Children with Congenital Heart Disease

目的了解先天性心脏病(congenital heart disease,CHD)患儿照顾者的负担现状,探讨其影响因素,为改善照顾者负担状况提供现实依据。方法 2016年3-10月,便利抽样法选取在上海某三级甲等医院入院治疗的CHD患儿的照顾者150例为研究对象,采用一般资料调查表及Zarit照顾者负担量表(Zarit Burden interview,ZBI)对其进行调查分析。结果本组照护者负担得分20~61分,平均(39.65±10.18)分。轻度负担者90例,占60.0%;中度负担者55例,占36.7%;重度负担者5例,占3.3%。术后是否发生并发症、不同术后情况及不同住院时间的患儿,其照顾者照顾负担得分差异均有统计学意义(均P<0.05)。不同性别、文化程度、婚姻情况、医疗支付手段、睡眠情况、每日睡眠时间、身体状况、家庭主要成员身体状况、每天护理时间及参与护理人数不同的照顾者,其照顾负担得分的差异均有统计学意义(均P<0.05)。结论 CHD患儿照顾者负担的改善措施应当围绕改善照顾者自身及其他家属的健康状况以及增强照顾者应对能力及家庭支持等来展开。

Objective To describe the burden of primary caregivers of children with congenital heart disease （CHD） ,and to explore the related factors affecting caregiver burden, in order to provide evidence for improving their burden of care.Methods A convenient sampling method was used to investigate 150 children with CHD and their caregivers were selected from a Class Ⅲ Grade Ⅰ hospital in Shanghai.Zarit Burden Interview（ZBI） and selfmade general information questionnaire were used to measure the burden of caregivers, and the results were ana- lyzed.Results The ZBI score of 150 caregivers ranges form 20 to 61,with 39.65±10.18 in average.90 cases had mild degree of burden, which accounted for 60.0%, 55 cases had moderate level of burden, which accounted for 36.7 %. 5 cases had high level of burden, which accounted for 3.3 %.Postoperative complications, postoperative condition, hospitalization days, caregiver＇ s gender, education backgrand, marital status, means of medical payment, sleep quality, daily sleeping time, physical condition of caregivers, family＇s health condition, daily nursing time, number of involved caregivers have significant influence on care burden（all P〈0.05）.Conclusion Improving the health status of the caregivers themselves and other family members,enhancing coping ability of caregivers and providing family support could be useful in relieving caregiver burden CHD children.