癌症患者照料者护理负担、生命质量与抑郁的关系研究
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摘要
前言
     20世纪中叶以来,无论是在发达国家还是发展中国家,癌症在疾病谱和死因谱中的位置逐年上升,近年来都出现了以恶性肿瘤占据最主要位置的趋势。中国自2005年以来,癌症已成为位居首位的健康杀手。癌症是一种病程较长、病死率较高的全身消耗性疾病。患者长时间承受着肉体和精神的折磨,其照料者在长期繁重的护理环境中会倍感紧张和疲惫,幸福感降低以及生命质量下降,甚至身心健康受到损害。
     中国已进入老龄化社会,随着我国独生子女家庭进入成年期和居民平均寿命的提高,传统家庭的养老功能正在逐渐弱化,老年人口和癌症等慢性病患者的家庭护理问题正成为日益凸显的社会问题,实现护理工作社会化和建立护理保险制度将成为我国未来社会发展必须面对的重大社会问题。目前我国尚无相关的护理保障政策和护理保险制度,护理责任主要由家庭承担,而在欧美国家、日本、台湾及香港地区都有相应的护理保险,其护理负担部分由社会保障体系承担,相应地缓解了患者及家属的经济和护理负担。近些年,国内学者对癌症患者的心理压力与生活质量开展了大量的调查研究,但很少有学者从社会政策的视角对癌症患者照料者的护理负担问题进行研究,政策滞后将影响社会发展。
     因此,本研究旨在通过对癌症患者照料者的护理负担、照料者反应、社会支持、心理一致感、生活质量和抑郁倾向等变量关联关系的系统研究,详细阐明诸多自变量、因变量、中介变量和调节变量之间的关系,建构护理负担理论模型,为促进我国护理工作的社会化提供理论依据,为开展其他病种护理负担研究提供研究思路,为改善癌症患者护理现状提供有效的干预路径。
     对象与方法
     本研究采用横断面设计,在中国医科大学盛京医院,以方便抽样的方法,选取400位癌症患者照料者为研究对象。以面对面访谈和问卷调查的方式进行调查。研究工具使用结构性问卷,包括照料者的人口统计学资料、护理负担、生活质量、抑郁、照料者反应评估和心理一致感、社会支持。应用照料者负担量表(ZBI)、患者家属生命质量量表(QOL)及流调用抑郁自评量表(CES-D)测量癌症照料者护理负担情况、生命质量及抑郁倾向。采用Epidata3.0进行数据的统一录入,SPSS13.0对收集到的数据进行整理和分析,应用结构方程模型以探究癌症患者照料者护理负担、生命质量与抑郁的主要影响因素,探讨照料者反应的中介效应,及心理一致感和社会支持对护理负担的调节作用。
     结果
     结构方程模型分析结果显示,护理负担对抑郁有显著的主效应,护理负担程度越高,照料者抑郁倾向的发生率越高,生命质量越低。照料者反应作为护理负担导致抑郁的中介变量,而心理一致感对于抑郁倾向有着显著的调节作用,可降低家属的抑郁的发生。护理工作量对护理负担有显著性的影响,照料者的帮助方式与护理负担呈显著的正相关关系,人口统计学变量对护理负担并无显著性影响。高护理负担可导致照料者抑郁倾向的发生。
     结论
     护理工作量过大会增加患者家属照料者的护理负担的发生,应建立照料者的轮流护理的补偿机制,以减低照料者的护理负担程度。护理负担是导致抑郁的直接因素,照料者反应是护理负担导致照料者抑郁的中介变量、心理一致感作为调节变量,可降低相应的护理负担和抑郁发生率。因此应开展患者家属照料者反应能力及心理一致感的相关辅导,以增加其应对护理负担的能力,进而提高其生命质量。创造有利于缓解压力的支持性的环境以减低护理患者所导致的压力与抑郁和生命质量下降,如提高医院医疗水平与服务水平,改善患者的治疗环境、建立合理的医患关系、争取义工支持和社会救助。
Introduction
     Since the middle of the century, the rank of cancer in the disease spectrum and death spectrum increased dramaticly year by year no matter in developed or developing country. In recent years, malignant tumor has tended to be the most primary cause of death. Cancer has become the first health killer since the year 2005 in China. Cancer is a disease with high mortality and also is a systemic wasting disease. Patients suffer from both physical torture and the destruction of spirit in a relative long period. Cancer is not only a major life event to patients themselves but also has a great affect on their caregivers, often resulting in tension and pressure, declining of well-being and quality of life in caregivers. Meanwhile caregivers have to bear the burden and pressure in a long period of time because of the long-term and heavy caring work, thus their physical and mental health are seriously affected.
     Cancer patients and their families have to face not only cancer diagnosis and treatment process but also the impact of their family system. Especially core-type family type is the major type of current China's family type, that family members'life must be affected when there is a cancer patient in their family. In addition, China has entered the aging society which has a great number of older population. Under such circumstance, caregivers usually have heavy family burden to family members including supporting the elderly, raising children and taking care of cancer patients.
     Due to aging and the one child policy, the caregiving problem has become prominent in China. Since long-term care has not established in China, as well as the shortage of official nurses and caregivers, family members usually take the responsibility of taking care of patients and older people, their quality of life should not be underestimated.
     In recent years, domestic scholars have carried out a large number of researches on the psychological stress and quality of life of cancer patients, but few scholars care for the burden of caregivers of cancer patients. Therefore, we carry out this survey in order to evaluate the burden of care and quality of life of caregivers of cancer patients and to study the related factor. In this study, we provide the evidence through the evaluation of caregivers of cancer patients about the burden of care, quality of life and depression levels to explore effective predictor to improve the coping capacity of caregivers of cancer patients, to reduce their stress and to improve their health status, as well as to further improve the quality of life and life satisfaction of cancer patients.
     This study aims to assess caregiver burden, quality of life and depression among the cancer patients, and explore the relatinship of caregiver burden, quality of life and depression and to find out predictors of caregiver burden on depression. Finally, establish theoretical model of caregiver burden, provide evidence and new ideas about long-term care for the government, and give effective interventions in order to improve the care situations
     Method
     A cross-sectional study was conducted through the convince sampling, composed of 400 caregivers of cancer patients from 3 departments in the Second Affiliated Hospital of China Medical University. A face-to-face interview was explored to assess caregivers' burden, depression, and quality of life.
     The questionnaire consisted of question on demographic variables, the Chinese edition of Zarit caregiver burden interview (ZBI), quality of life (QOL), Center for Epidemiologic Studies Depression Scale (CES-D), Caregiver reaction assessment (CRA), Sence of coherence scale (SOC). Multivariate linear regression analyses were performed to study the factors related to cargiver burden and depression. Statistical analysis was performed using Statistical Package for the Social Sciences Version,11.5 (SPSS Inc.,Chicago,IL,USA),and apply structural equation (SEM) AMOS6.0 to
     Result
     Structural equation model analysis showed that cargiver burden had a significantly main effect on depression, the heavier cargiver burden is, the prevalence of depression is higher, and the QOL is lower. Caregiver reaction was the mediator of burden on depression. Sence of coherence was the moderator, which could moderate depression. Additionally Caring workload has a remarkable effect on cargiver burden, and the help mode has a positive correlation with caregiver burden, while demographic variables has not notable influence on caregiver burden.
     Conclusion
     Caring workload results in the prevalence of caregiver burden, it is necessary to establish compensation mechanism for alternating nursing care,in order to decrease caregivers burden. Caregiver reaction was the mediator of burden on depression. Sence of coherence was the moderator, which could moderate depression.
     Therefore, guidance training should be provided in order to enhance the levels of coping capacity and psychological control, so as to improve the ability to deal with nursing burden, and improve their quality of life. Supportive environment should be created which contributes to releasing pressure, including improve medical level and service level of hospitals, optimize patients'therapeutic environment, establish rational doctor-patient relationship, strive volunteers'support and social helping.
引文
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