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

• 批准号: 9177102
• 负责人: FRANCES L LYNCH
• 金额: $ 71.46万
• 依托单位: KAISER FOUNDATION RESEARCH INSTITUTE
• 依托单位国家: 美国
• 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/9177102
• 关键词: 17 year old; Absenteeism at work; 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; Economics; Emotional; Employment; Equilibrium; Expenditure; Face; Family; Family Policy; Federally Qualified Health Center; Financial cost; Government; Hawaii; Health; Health Care Costs; Health system; Healthcare; Incentives; Incidence; Insurance; Insurance Carriers; Intervention; Interview; Knowledge; Lead; Malignant Neoplasms; Medical; Outcome; Parents; Participant; Patient Self-Report; Pattern; Policies; Recruitment Activity; Rehabilitation therapy; Reporting; Research; Resources; School Health Services; 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; information gathering; innovation; intervention program; racial diversity; safety net; social skills; socioeconomics

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：拟议的研究将估计家庭财务和时间成本 自闭症谱系障碍（ASD）的儿童家庭，将这些家庭成本与那些家庭的成本进行比较 由患有哮喘（ATA）的儿童家庭和没有明显健康的儿童的家庭经历 条件（NSH）。 ASD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ASD相关的需求的时间成本（例如 协调健康和学校服务）。此外，时间要求和压力与育儿a相关 患有ASD的孩子可能会给父母带来就业困难，例如由于ASD而导致的工作时间 相关护理承担责任。所有家庭都经历与照顾他们的财务和时间成本有关的 儿童，甚至是NSH的孩子的家庭。但是，以前关于儿童家庭费用的报告 诸如癌症之类的疾病表明，当孩子身体健康时，成本要大得多 健康）状况。了解ASD和ATA儿童家庭的额外经济负担将有助于 在制定支持家庭的政策中，例如，针对关心的家庭的新税收优惠措施 患有ASD的儿童或创新的干预措施，以帮助父母进行照料。 迄今为止，美国ASD成本的研究集中于直接医疗保健费用 从家庭角度来看，卫生系统和大多数研究都忽略了成本。例如，状态 考虑自闭症保险授权通常仅考虑其对保险公司成本的潜在影响，而没有 考虑这些授权如何影响其他社会和家庭成本。 我们提出了迄今为止与ASD相关的家庭成本的最大，最严格的研究。我们将招募 来自四个地理和种族多样化的卫生系统的3-17岁儿童家庭的1500个家庭： Kaiser Permanente（KP）西北，KP东南，KP北加州，KP夏威夷和Ochin 联邦资格卫生中心的系统。具体来说，有500个ASD的儿童家庭，有500个家庭 患有ATA的儿童和500名NSH儿童家庭将使用家庭一年 经济影响访谈（FEII）。我们将估计财务成本（例如，自付费用）， 时间成本（例如，时间协调护理）和就业成本（例如，失业时间）相关 为儿童的儿童健康，ASD，ATA和NSH的孩子的健康。除了这三个目标之外，我们还将 还探讨家庭成本因年龄（早期，中期和童年晚期），人口特征，人口特征， 以及成本是否与雇主政策和州自闭症政策有关 ASD家庭成本。调查结果将为设计医疗保健，工作场所和 认识自闭症的全部影响的社会政策。