肌萎缩侧索硬化患者照顾者照顾负担状况及其影响因素  

The influencing factors of burdens in caregivers of patients with amyotrophic lateral sclerosis

作　　者：涂双燕[1] 苗晓慧[1] 耿丹[1] 曾玉萍[1] 李银萍[1] 杨蓉[1] Tu Shuangyan;Miao Xiaohui;Geng Dan;Zeng Yuping;Li Yinping;Yang Rong(Department of Neurology, Sichuan University Huaxi Hospital, Chengdu, 610041, China)

机构地区：[1]四川大学华西医院神经内科,四川成都610041

出　　处：《现代临床护理》2018年第11期7-13,共7页Modern Clinical Nursing

摘　　要：目的了解肌萎缩侧索硬化患者照顾者照顾负担现状及其影响因素,以便为降低照顾者负担、制订科学的干预措施提供参考依据。方法采用便利抽样方法选取144例肌萎缩侧索硬化患者,采用照顾负担量表(Zarit caregiver burden interview,ZBI)对其进行调查,了解肌萎缩侧索硬化患者照顾者照顾负担现状及其影响因素。结果照顾者照顾负担总分为(26.08±14.95)分,处于轻度到中度负担水平。影响肌萎缩侧索硬化患者照顾者照顾负担因素:患者球部功能、运动功能、文化程度和医疗费用支付方式(均P<0.05)。结论照顾者照顾负担总体处于轻度到中度;患者疾病的球部功能、运动功能损失越严重,患者无医疗保险、文化程度越高其照顾者照顾负担越严重。护士在临床中应加强患者病情和症状管理,进行个体化指导,以减轻ALS患者照顾者照顾负担;国家和社会应对ALS家庭给予医疗政策上的支持,提供合理的医疗保障措施,帮助患者缓解家庭经济负担。Objective To investigate the burdens of patients with amyotrophic lateral sclerosis (ALS) as well as their influencing factors.Method Totally 144 caregivers of ALS patients were enrolled in the investigation into the level and influencing factors of their burdens using basic demographic information and Zarit burden interview (ZBI) by convenient sampling.Results The caregiver's burdens were in the mild to moderate level with a total score of 26.08±14.95.The influencing factors of burdens were patients' bulbar function,motor function,patients' educational level and payment method of medical expense.Conclusions The caregivers of ALS patients suffered from mild to moderate level of burdens.The more loss of the bulbar function and motor function,the heavier the burdens for those without medical insurance,lower education level,which indicates that clinically the nurses should strengthen the management of patients' condition and symptoms,conduct individualized guidance,give the necessary attention and education to patients and caregivers with different stages of disease and different educational levels so as to relieve caregiver burden.The state and society should provide support in policy to ALS patients and their families and reasonable medical assurance measures,helping them to relieve their financial burden.

关 键 词：肌萎缩侧索硬化 照顾者 照顾者负担 

分 类 号：R47[医药卫生—护理学]