Scholte op Reimer W J, de Haan R J, Rijnders P T, Limburg M, van den Bos G A
Department of Social Medicine, Academic Medical Center, University of Amsterdam, The Netherlands.
Stroke. 1998 Aug;29(8):1605-11. doi: 10.1161/01.str.29.8.1605.
Few data are available on the specific caregiving-related problems of stroke patients' caregivers and factors that influence the burden of these caregivers. The aim of this study was to describe the level and specific nature of the burden of caregiving as experienced by stroke patients' partners and to estimate the relative contribution of patient and partner characteristics to the presence of partners' burden.
As part of a multicenter study on quality of care, burden of caregiving was assessed in 115 partners at 3 years after stroke. Explanatory factors of burden were studied in terms of (1) characteristics of patients (sociodemographic status, severity, type, and localization of stroke, disability, handicap, and unmet care demands) and (2) characteristics of partners (age, sex, disability, quality of life, loneliness, amount of care provided, and unmet care demands).
Partners of stroke patients perceived most caregiving burden in terms of feelings of heavy responsibility, uncertainty about patients' care needs, constant worries, restraints in social life, and feelings that patients rely on only their care. Multiple regression analysis revealed that a higher level of burden could partly be explained by patients' disability (R2 = 14%), but primarily by partners' characteristics in terms of emotional distress (R2 = 16%), loneliness (R2 = 6%), disability (R2 = 3%), amount of informal care provided (R2 = 2%), unmet demands for psychosocial care (R2 = 4%), and unmet demands for assistance in activities of daily living (R2 = 2%).
Higher levels of burden are primarily related to partners' emotional distress and less to the amount of care they provided, or to patients' characteristics. Sharing responsibilities, helping to clarify the patients' needs, and getting occasional relief of caregiving may be important in the support of caregivers.
关于中风患者照料者的特定照料相关问题以及影响这些照料者负担的因素，现有数据较少。本研究的目的是描述中风患者伴侣所经历的照料负担水平及具体性质，并评估患者和伴侣特征对伴侣负担存在的相对贡献。
作为一项关于护理质量的多中心研究的一部分，在中风后3年对115名伴侣的照料负担进行了评估。从以下方面研究负担的解释因素：（1）患者特征（社会人口统计学状况、中风的严重程度、类型和部位、残疾、障碍及未满足的护理需求）；（2）伴侣特征（年龄、性别、残疾、生活质量、孤独感、提供的护理量及未满足的护理需求）。
中风患者的伴侣在责任感沉重、对患者护理需求不确定、持续担忧、社交生活受限以及患者仅依赖其护理的感觉等方面感受到了最大的照料负担。多元回归分析显示，较高水平的负担部分可由患者的残疾来解释（R2 = 14%），但主要由伴侣在情绪困扰（R2 = 16%）、孤独感（R2 = 6%）、残疾（R2 = 3%）、提供的非正式护理量（R2 = 2%）、心理社会护理未满足需求（R2 = 4%）以及日常生活活动协助未满足需求（R2 = 2%）方面的特征来解释。
较高水平的负担主要与伴侣的情绪困扰有关，而与他们提供的护理量或患者特征的关系较小。分担责任、帮助明确患者需求以及偶尔减轻照料负担在照料者支持方面可能很重要。
