Understanding Family Economic Impact of Chronic Child Health Conditions

了解慢性儿童健康状况对家庭经济的影响

基本信息

批准号：
9335986
负责人：
FRANCES L LYNCH
金额：
$ 67.19万
依托单位：
KAISER FOUNDATION RESEARCH INSTITUTE
依托单位国家：
美国
项目类别：
财政年份：
2016
资助国家：
美国
起止时间：
2016-09-01 至 2020-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9335986
关键词：
17 year old Address Affect Age Asthma Autistic Disorder California Caring Characteristics Child Child Care Child Rearing Child health care Childhood Chronic Clinic Cost Control Data Diagnosis Early Intervention Economic Burden Emotional Employment Equilibrium Expenditure Face Family Family health status Federally Qualified Health Center Financial cost Geography Government Hawaii Health Health Care Costs Health system Healthcare Incentives Incidence Insurance Insurance Carriers Intervention Interview Knowledge Lead Malignant Neoplasms Medical Outcome Parents Patient Self-Report Pattern Policies Recruitment Activity Rehabilitation therapy Reporting Research Resources Schools Services Severities Shapes Site Social Functioning Social Policies Strategic Planning Stress System Taxes Time Uninsured Medical Expense United States Work Workplace autism spectrum disorder base caregiver strain caregiving cost design development policy economic impact ethnic diversity evidence base experience family support high risk improved innovation intervention program racial diversity safety net social skills socioeconomics

项目摘要

PROJECT SUMMARY/ABSTRACT: The proposed study will estimate family financial and time costs for families of children with an autism spectrum disorder (ASD) and will compare these family costs to those experienced by families of children with asthma (ATA) and families of children with no significant health conditions (NSH). Families of children with ASD face financial costs, such as out-of-pocket expenses for medical and other services, as well as time costs from demands related to managing the child's ASD (e.g., coordinating health and school services). In addition, time demands and stress associated with parenting a child with ASD can lead to employment difficulties for parents, such as missed time from work due to ASD- related care giving responsibilities. All families experience financial and time costs related to caring for their children, even families of children with NSH. However, previous reports of family costs for children with conditions such as cancer suggest that costs are substantially greater when a child has a significant health condition. Understanding the additional economic burden for families of children with ASD and ATA will help in the development of policies to support families, for example, new tax incentives for families caring for children with ASD, or innovative interventions to aid parents in caregiving. Research to date on the cost of ASD in the United States has focused on direct health-care costs to health systems and most studies have ignored costs from the family perspective. For example, states considering autism insurance mandates often consider only their potential effect on costs to insurers, without considering how these mandates would affect other societal and family costs. We propose the largest and most rigorous study to date of family costs related to ASD. We will recruit 1500 families of children 3-17 years old from four geographically and ethnically diverse health systems: Kaiser Permanente (KP) Northwest, KP Southeast, KP Northern California, KP Hawaii, and the OCHIN system of federally qualified health centers. Specifically, 500 families of children with ASD, 500 families of children with ATA, and 500 families of children with NSH will be followed for one year using the Family Economic Impact Interview (FEII). We will estimate financial costs (e.g., out-of-pocket expenditures), time costs (e.g., time coordinating care), and employment costs (e.g., missed time from work) related to child's health for families of children with ASD, ATA and NSH. In addition to these three aims, we will also explore how family costs differ by age (early, middle, and late childhood), demographic characteristics, and whether costs are related to employer policies and state autism policies that may moderate the impact of ASD on family costs. Findings will provide essential information for designing health-care, workplace, and social policies that recognize the full impact of autism.

项目摘要/摘要：拟议的研究将估算家庭的财务和时间成本患有自闭症谱系障碍 (ASD) 的儿童的家庭，会将这些家庭成本与其他家庭的成本进行比较患有哮喘（ATA）的儿童的家庭和健康状况不佳的儿童的家庭经历过条件（NSH）。自闭症儿童的家庭面临经济成本，例如自付费用医疗和其他服务，以及与管理儿童自闭症谱系障碍相关的要求所产生的时间成本（例如，协调卫生和学校服务）。此外，与养育孩子相关的时间需求和压力患有自闭症谱系障碍 (ASD) 的孩子可能会给父母带来就业困难，例如因自闭症谱系障碍 (ASD) 而错过工作时间相关的护理责任。所有家庭都会经历与照顾家人相关的经济和时间成本儿童，甚至是 NSH 儿童的家庭。然而，之前关于患有此类疾病的儿童的家庭费用的报告癌症等疾病表明，当孩子健康状况不佳时，成本会大大增加健康）状况。了解 ASD 和 ATA 儿童家庭的额外经济负担将有所帮助制定支持家庭的政策，例如，为照顾家庭的家庭提供新的税收优惠患有自闭症谱系障碍（ASD）的儿童，或帮助父母照顾的创新干预措施。迄今为止，关于美国自闭症谱系障碍 (ASD) 成本的研究主要集中于以下人群的直接医疗保健成本：卫生系统和大多数研究都忽略了家庭角度的成本。例如，国家考虑自闭症保险规定时，通常只考虑其对保险公司成本的潜在影响，而不考虑考虑这些任务将如何影响其他社会和家庭成本。我们提出了迄今为止规模最大、最严格的关于 ASD 相关家庭成本的研究。我们将招募来自四个不同地域和种族的卫生系统的 1500 个 3-17 岁儿童家庭： Kaiser Permanente (KP) 西北、KP 东南、KP 北加州、KP 夏威夷和奥钦联邦合格的健康中心系统。具体来说，500个患有自闭症谱系障碍儿童的家庭，500个患有自闭症谱系障碍的儿童的家庭，患有 ATA 的儿童，将使用 Family 对 500 个患有 NSH 儿童的家庭进行为期一年的跟踪经济影响访谈（FEII）。我们将估算财务成本（例如自付费用），与时间成本（例如，协调护理的时间）和就业成本（例如，错过工作时间）相关为了患有 ASD、ATA 和 NSH 儿童的家庭的儿童健康。除了这三个目标之外，我们还将还探讨家庭成本如何因年龄（童年早期、中期和晚期）、人口特征、以及成本是否与雇主政策和国家自闭症政策有关，这些政策可能会减轻自闭症的影响 ASD 对家庭费用的影响。研究结果将为设计医疗保健、工作场所和承认自闭症全面影响的社会政策。