Stress, Parenting and Cognitive Function in Children with Sickle Cell Disease

描述(由申请人提供)：患有镰状细胞病(SCD)的儿童在神经认知发展方面存在严重问题，包括整体智力功能和注意力和执行功能等特定领域的缺陷。许多与疾病相关的因素已被证明可以预测神经认知问题的程度，包括镰状细胞基因型、显性中风/脑梗死史、无症状性梗死史/微梗死史、贫血引起的慢性缺氧、急性缺氧、营养缺陷、脑血流峰值速度增加以及睡眠呼吸障碍/睡眠呼吸暂停。然而，社会环境风险因素可能导致SCD儿童神经认知问题的额外风险，但相对较少受到关注。唯一的例外是两项研究，这两项研究表明，家庭社会经济地位(SES)低与SCD儿童神经认知功能较差有关。越来越多关于在贫困中长大的儿童的研究表明，环境压力是贫困儿童认知障碍的重要风险因素，而中断/无反应的育儿方式是贫困和压力对儿童认知功能和发展的影响的中心调节因素。然而，到目前为止，还没有研究表明父母教养方式在SCD儿童神经认知障碍中的潜在作用。本研究的目的是检验SCD儿童认知功能的社会-环境预测概念的可行性、可接受性和初步验证。我们将(A)招募不同年龄的SCD儿童及其父母；(B)招募兄弟姐妹对照样本；(C)从没有慢性病的家庭招募健康对照儿童样本；(D)对SCD儿童及其父母、其兄弟姐妹以及健康对照儿童及其父母进行认知测试；以及(E)直接观察父母与患有SCD儿童的互动，以及父母与兄弟姐妹和健康对照儿童与其父母的互动。

DESCRIPTION (provided by applicant): Children with sickle cell disease (SCD) experience significant problems in neurocognitive development, including deficits in overall intellectual functioning and in specific areas such as attention and executive function. A number of disease-related factors have been shown to be predictive of the extent of neurocognitive problems including sickle cell genotype, history of overt stroke/cerebral infarct, history of silent infarct/micro infarcts, chronic hypoxia due to anemia, acute hypoxia, nutritional deficits, increased peak cerebral blood flow velocity, and sleep disordered breathing/sleep apnea. However, social-environmental risk factors that may contribute additional risk for neurocognitive problems in children with SCD have received relatively little attention. The lone exceptions are two studies that have shown that low family socioeconomic status (SES) is related to poorer neurocognitive function in children with SCD. A growing body of research on children growing up in poverty has shown that environmental stress is a significant risk factor for cognitive impairment in children growing up poor and that disrupted/non-responsive parenting is a central mediator of the effects of poverty and stress on children's cognitive function and development. However, no studies to date have examined the potential role of parenting as a contributing factor in neurocognitive impairment in children with SCD. The goal of the proposed research is to test the feasibility, acceptability and initial proof of concept of social-environmental predictrs of cognitive function in children with SCD. We will (a) recruit a wide age range of children with SCD and their parents; (b) recruit a sibling control sample; (c) recruit a sample of healthy contro children from families without chronic illness; (d) administer cognitive tests to children with SCD their parents, and their siblings, as well as healthy control children and their parents; and (e) conduct direct observations of interactions of parents with children with SCD and interactions of parents with sibling controls and healthy controls and their parents.