The health and well-being of caregivers of children with cerebral palsy
The health and well-being of caregivers of children with cerebral palsy
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DOI：
10.1542/peds.2004-1689
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发表时间：
2005-06-01
期刊：
影响因子：
8
通讯作者：
Wood, E
中科院分区：
文献类型：
--
作者：
Raina, P;O'Donnell, M;Wood, E
客观的。大多数儿童都享有健康的童年，几乎不需要专门的医疗保健服务。然而，一些儿童在幼儿期遇到困难，随着时间的推移需要获得和利用大量的医疗保健资源。虽然运动功能受损是脑瘫 (CP) 综合征的标志，但许多患有这种发育障碍的儿童也会出现感觉、交流和智力障碍，并且可能在自我护理功能方面存在复杂的限制。尽管照顾孩子是幼儿父母的正常组成部分，但当孩子经历功能限制和可能的长期依赖时，这一角色就具有完全不同的意义。父母面临的主要挑战之一是有效管理孩子的慢性健康问题，并兼顾这一角色与日常生活的要求。因此，在家照顾患有复杂残疾的儿童的任务对于照顾者来说可能有些艰巨。事实证明，提供此类护理可能不利于慢性残疾儿童父母的身体健康和心理健康。目前尚不完全清楚为什么有些护理人员能够很好地应对而另一些护理人员却不能。估计被照顾者的残疾对照顾者的健康的“独立”或“直接”影响的方法价值有限，因为（1）在有限的实验情况之外，单因素变化很少见； (2) 加性关系和完美测量的假设很少成立； (3)这些方法没有提供完整的视角，因为它们未能检查预测变量和健康结果之间发生的间接路径。需要更详细的分析方法来同时了解直接和间接影响。本研究的主要目的是在一个基于理论的多维模型中检查脑瘫儿童的成年护理人员身心健康的决定因素。方法。我们开发了一个压力过程模型，并利用来自大量脑瘫儿童护理人员的数据应用结构方程模型。这种设计可以检查儿童的健康、行为和功能状态、照顾者特征、社会支持、家庭功能以及照顾者身心健康结果之间的直接和间接关系。脑瘫儿童家庭 (n = 468) 是从加拿大安大略省提供门诊残疾管理和支持的 19 个地区儿童康复中心招募的。目前的研究利用了先前一项研究（安大略运动发育研究）中研究人员可获得的人群，该研究探讨了脑瘫儿童的粗大运动发育模式。使用标准化的、自行填写的家长问卷以及面对面的家庭访谈来评估人口统计变量和照顾者身心健康的数据。结构方程模型用于测试我们的概念模型中概述的具体假设。这种分析方法涉及两步过程。第一步，使用验证性因素分析来测试假设用于测量基础结构的观察变量；这一步导致了所谓的测量模型。第二步测试有关结构模型中变量之间关系的假设。概念模型中的所有假设路径都经过测试并包含在结构模型中。然而，最终结果中只显示了重要的路径。使用结构模型计算了理论构建对身心健康的直接、间接和总体影响。结果。照顾者福祉最重要的预测因素是儿童行为、照顾需求和家庭功能。较高水平的行为问题与护理人员较低的心理 (beta = -.22) 和身体健康 (beta = -.18) 水平相关，而较少的儿童行为问题与较高的自我认知 (beta = -.37) 和较强的压力管理能力 (beta = -.18) 相关。较少的护理需求分别与护理人员更好的身体 (beta = .23) 和心理 (beta = .12) 福祉相关。同样，较高的家庭功能报告与较好的心理健康（β = 0.33）和身体健康（β = 0.33）相关。自我认知和压力管理是护理人员心理健康的重要直接预测因素，但并不直接影响他们的身体健康。护理人员较高的自尊心和对护理情况的掌控感预示着更好的心理健康（beta = .23）。使用更多的压力管理策略也与护理人员更好的心理健康有关（β = .11）。总收入 (beta = .08) 和社会支持 (beta = .06) 仅对心理健康结果产生间接总体影响，而自我认知 (beta = .22)、压力管理 (beta = .09)、总收入 (beta = .07) 和社会支持 (beta = .06) 仅对身体健康结果产生间接总体影响。结论。在这项研究中，照顾者主要是母亲，他们的心理和身体健康受到儿童行为和照顾需求的强烈影响。儿童行为问题通过影响自我认知和家庭功能，直接和间接地成为照顾者心理健康的重要预测因素。护理需求直接影响护理人员的心理和身体健康。孩子的实际日常需求给父母带来了挑战。大家庭、朋友和邻居提供的社会支持对健康结果的影响次于密切合作的直系亲属。家庭功能直接影响健康，也调节自我认知、社会支持和压力管理的影响。在脑瘫儿童的家庭中，优化照顾者身心健康的策略包括行为管理和日常功能活动以及压力管理和自我效能技巧的支持。这些数据支持需要以家庭为中心的生物心理社会框架的临床路径，而不仅仅是主要针对儿童的技术和短期康复干预措施。在预防方面，为父母提供认知和行为策略来管理孩子的行为可能有可能改变看护者的健康结果。该模型还需要与其他残疾儿童的照顾者一起进行检验。
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 (beta = -.22) and physical health (beta = -.18) of the caregivers, whereas fewer child behavior problems were associated with higher self-perception (beta = -.37) and a greater ability to manage stress (beta = -.18). Less caregiving demands were associated with better physical (beta = .23) and psychological (beta = .12) well-being of caregivers, respectively. Similarly, higher reported family functioning was associated with better psychological health (beta = .33) and physical health (beta = .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 (beta = .23). The use of more stress management strategies was also associated with better psychological health of caregivers (beta = .11). Gross income (beta = .08) and social support (beta = .06) had indirect overall effects only on psychological health outcome, whereas self-perception (beta = .22), stress management (beta = .09), gross income (beta = .07), and social support (beta = .06) had indirect total effects only on physical health outcomes. Conclusions. The psychological and physical health of caregivers, who in this study were primarily mothers, was strongly influenced by child behavior and caregiving demands. Child behavior problems were an important predictor of caregiver psychological well-being, both directly and indirectly, through their effect on self-perception and family function. Caregiving demands contributed directly to both the psychological and the physical health of the caregivers. The practical day-to-day needs of the child created challenges for parents. The influence of social support provided by extended family, friends, and neighbors on health outcomes was secondary to that of the immediate family working closely together. Family function affected health directly and also mediated the effects of self-perception, social support, and stress management. In families of children with CP, strategies for optimizing caregiver physical and psychological health include supports for behavioral management and daily functional activities as well as stress management and self-efficacy techniques. These data support clinical pathways that require biopsychosocial frameworks that are family centered, not simply technical and short-term rehabilitation interventions that are focused primarily on the child. In terms of prevention, providing parents with cognitive and behavioral strategies to manage their child's behaviors may have the potential to change caregiver health outcomes. This model also needs to be examined with caregivers of children with other disabilities.