Social and Behavioral Research Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland 20892, USA.
Am J Med Genet A. 2012 Aug;158A(8):1877-84. doi: 10.1002/ajmg.a.35425. Epub 2012 Jun 18.
Uncertainty is a pervasive characteristic of illness. Yet little is known about the individual or situational factors that contribute to perceptions of uncertainty. The present study aims to examine the factors that contribute to perceived uncertainty among parents of a child with an undiagnosed condition. Two hundred sixty-six parents of a child, or children, affected by an undiagnosed medical condition for at least 2 years completed an electronically administered mixed-methods survey assessing theoretical predictors of perceived uncertainty. Multivariate linear regression analyses were used to identify the relationship of key variables to perceived uncertainty. Parents' perceived control and optimism were negatively associated with uncertainty (B=-4.044, P≤0.001, B=-0.477, P≤0.05). Subjective disease severity was positively associated with perceived uncertainty (B=1.797, P≤0.05). Our findings suggest that parents who experience greater uncertainty feel less control over their child's medical condition, which may lead to less effective coping and poorer adaptation. Parents who are less optimistic or who perceive their child's disease as more severe may benefit most from interventions that target situations where parents perceive the least control, thereby enhancing coping and ultimately, adaptation.
不确定性是疾病的一个普遍特征。然而，人们对导致不确定性感知的个体或情境因素知之甚少。本研究旨在探讨导致患有未确诊疾病的儿童的父母感到不确定性的因素。266 名儿童的父母（或多名儿童）受未确诊的医疗状况影响至少 2 年，完成了一项电子管理的混合方法调查，评估了感知不确定性的理论预测因素。多元线性回归分析用于确定关键变量与感知不确定性的关系。父母的感知控制和乐观与不确定性呈负相关（B=-4.044，P≤0.001，B=-0.477，P≤0.05）。主观疾病严重程度与感知不确定性呈正相关（B=1.797，P≤0.05）。我们的研究结果表明，感到不确定性更大的父母对孩子的病情控制感较弱，这可能导致应对效果较差和适应不良。不太乐观或认为孩子的疾病更严重的父母可能最受益于针对父母感知控制最弱的情况的干预措施，从而增强应对能力，最终增强适应能力。
