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育方面存在显著问题，包括整体智力功能和特定领域（如注意力和执行功能）的缺陷。许多疾病相关因素已被证明可预测神经认知问题的程度，包括镰状细胞基因型、显性卒中/脑梗死史、无症状性梗死/微梗死史、贫血引起的慢性缺氧、急性缺氧、营养缺乏、脑血流速度峰值增加、睡眠呼吸障碍/睡眠呼吸暂停。然而，社会环境风险因素可能会增加SCD儿童神经认知问题的风险，但这方面的关注相对较少。唯一的例外是两项研究表明，低家庭社会经济地位（SES）与SCD儿童较差的神经认知功能有关。越来越多的关于贫困儿童的研究表明，环境压力是贫困儿童认知障碍的一个重要风险因素，而中断/无反应的养育方式是贫困和压力对儿童认知功能和发展影响的主要中介。然而，到目前为止，还没有研究调查了父母作为SCD儿童神经认知障碍的一个促成因素的潜在作用。本研究的目的是测试SCD儿童认知功能的社会环境预测因素的可行性、可接受性和初步证明。我们会(a)招募不同年龄的残疾儿童及其家长；(b)招募同胞对照样本；(c)从无慢性病家庭中招募健康儿童作为对照；(d)对患有SCD的儿童及其父母、兄弟姐妹以及健康对照儿童及其父母进行认知测试；(e)直接观察父母与残疾儿童的互动，以及父母与兄弟姐妹对照组和健康对照组及其父母的互动。

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.