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首页> 外文期刊>Pediatrics: Official Publication of the American Academy of Pediatrics >The Health and Well-Being of Caregivers of Children With Cerebral Palsy
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The Health and Well-Being of Caregivers of Children With Cerebral Palsy

机译:脑性瘫痪儿童看护者的健康和福祉

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Objective. Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources over time. Although impaired motor function is the hallmark of the cerebral palsy (CP) syndromes, many children with this development disorder also experience sensory, communicative, and intellectual impairments and may have complex limitations in self-care functions. Although caregiving is a normal part of being the parent of a young child, this role takes on an entirely different significance when a child experiences functional limitations and possible long-term dependence. One of the main challenges for parents is to manage their child's chronic health problems effectively and juggle this role with the requirements of everyday living. Consequently, the task of caring for a child with complex disabilities at home might be somewhat daunting for caregivers. The provision of such care may prove detrimental to both the physical health and the psychological well-being of parents of children with chronic disabilities. It is not fully understood why some caregivers cope well and others do not. The approach of estimating the “independent” or “direct” effects of the care recipient's disability on the caregiver's health is of limited value because (1) single-factor changes are rare outside the context of constrained experimental situations; (2) assumptions of additive relationships and perfect measurements rarely hold; and (3) such approaches do not provide a complete perspective, because they fail to examine indirect pathways that occur between predictor variables and health outcomes. A more detailed analytical approach is needed to understand both direct and indirect effects simultaneously. The primary objective of the current study was to examine, within a single theory-based multidimensional model, the determinants of physical and psychological health of adult caregivers of children with CP.Methods. We developed a stress process model and applied structural equation modeling with data from a large cohort of caregivers of children with CP. This design allowed the examination of the direct and indirect relationships between a child's health, behavior and functional status, caregiver characteristics, social supports, and family functioning and the outcomes of caregivers' physical and psychological health. Families ( n = 468) of children with CP were recruited from 19 regional children's rehabilitation centers that provide outpatient disability management and supports in Ontario, Canada. The current study drew on a population available to the investigators from a previous study, the Ontario Motor Growth study, which explored patterns of gross motor development in children with CP. Data on demographic variables and caregivers' physical and psychological health were assessed using standardized, self-completed parent questionnaires as well as a face-to-face home interview. Structural equation modeling was used to test specific hypotheses outlined in our conceptual model. This analytic approach involved a 2-step process. In the first step, observed variables that were hypothesized to measure the underlying constructs were tested using confirmatory factor analysis; this step led to the so-called measurement model. The second step tested hypotheses about relationships among the variables in the structural model. All of the hypothesized paths in the conceptual model were tested and included in the structural model. However, only paths that were significant were shown in the final results. The direct, indirect, and total effects of theoretical constructs on physical and psychological health were calculated using the structural model.Results. The most important predictors of caregivers' well-being were child behavior, caregiving demands, and family function. A higher level of behavior problems was associated with lower levels of both psychological (β = ?.22) and physical health (β = ?.18) of the caregivers, whereas fewer child behavior problems were associated with higher self-perception (β = ?.37) and a greater ability to manage stress (β = ?.18). Less caregiving demands were associated with better physical (β = .23) and psychological (β = .12) well-being of caregivers, respectively. Similarly, higher reported family functioning was associated with better psychological health (β = .33) and physical health (β = .33). Self-perception and stress management were significant direct predictors of caregivers' psychological health but did not directly influence their physical well-being. Caregivers' higher self-esteem and sense of mastery over the caregiving situation predicted better psychological health (β = .23). The use of more stress management strategies was also associated with better psychological health of caregivers (β = .11). Gross income (β = .08) and social support (β = .06)
机译:目的。大多数儿童享有健康的童年,几乎不需要专门的保健服务。然而,一些儿童在幼儿时期遇到困难,并且随着时间的流逝需要获得和利用大量的医疗资源。尽管运动功能障碍是脑性瘫痪(CP)综合征的标志,但许多患有这种发育障碍的儿童也会经历感觉,沟通和智力障碍,并且在自我保健功能方面可能有复杂的局限性。尽管照看是年幼父母的正常组成部分,但当孩子遇到功能限制和可能的长期依赖时,这种作用就具有完全不同的意义。父母面临的主要挑战之一是如何有效地管理孩子的慢性健康问题,并使这一角色与日常生活的要求相适应。因此,在家中照顾残疾儿童的任务可能对监护人来说有些艰巨。提供此类照料可能会损害慢性残疾儿童父母的身体健康和心理健康。尚不清楚为什么有些护理人员会很好地应对而其他护理人员却不能很好地应对。估计护理人员的残疾对护理人员健康的“独立”或“直接”影响的方法具有有限的价值,因为(1)在受约束的实验情况下,单因素变化很少见; (2)加性关系和完美度量的假设很少成立; (3)这种方法不能提供完整的视角,因为它们无法检查预测变量与健康结果之间发生的间接途径。需要一种更详细的分析方法来同时理解直接和间接影响。本研究的主要目的是在基于单一理论的多维模型中检查CP儿童成年看护人的身体和心理健康的决定因素。我们开发了一个应力过程模型,并使用了来自大量CP儿童的照料者数据的结构方程模型。该设计允许检查儿童健康,行为和功能状况,照顾者特征,社会支持和家庭功能与照顾者身体和心理健康结果之间的直接和间接关系。从加拿大19个地区儿童康复中心招募了CP患儿家庭(n = 468),该中心在加拿大安大略省提供门诊残疾管理和支持。当前的研究利用了以前的研究(安大略运动增长研究)中可供研究人员使用的人群,该研究探讨了CP儿童的总体运动发育模式。使用标准化的,自我完​​成的父母问卷以及面对面的家庭访谈,评估了有关人口统计学变量和护理人员的身体和心理健康的数据。结构方程模型用于检验我们概念模型中概述的特定假设。这种分析方法涉及两个步骤。第一步,使用验证性因子分析测试假设用来测量基础结构的观察变量。这一步导致了所谓的测量模型。第二步检验关于结构模型中变量之间关系的假设。测试了概念模型中的所有假设路径,并将其包括在结构模型中。但是,最终结果中仅显示了重要的路径。使用结构模型计算了理论结构对身心健康的直接,间接和总体影响。照顾者福祉的最重要预测指标是儿童行为,照顾需求和家庭功能。较高的行为问题与照顾者的心理(β=?.22)和身体健康(β=?.18)的较低水平相关,而较少的儿童行为问题与较高的自我知觉相关(β= (?.37)和更大的压力管理能力(β=?.18)。较少的护理需求分别与护理人员的身体健康(β= .23)和心理健康(β= .12)相关。同样,更高的家庭功能报告与更好的心理健康(β= .33)和身体健康(β= .33)相关。自我知觉和压力管理是护理人员心理健康的重要直接指标,但并不直接影响其身体健康。护理人员较高的自尊心和对护理状况的掌控感预示了较好的心理健康(β= 0.23)。使用更多的压力管理策略还可以提高护理人员的心理健康水平(β= .11)。总收入(β= .08)和社会支持(β= .06)

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