Autism Complexity and Parental Wellbeing: The Role of Care Coordination in Promoting Health Equity

自闭症复杂性和父母福祉：护理协调在促进健康公平中的作用

• 批准号: 10575056
• 负责人: Michele LeAnn Parker
• 金额: $ 7.7万
• 依托单位: FLORIDA STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-04-01 至 2025-03-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10575056
• 关键词: Academy; Accountability; Adverse effects; Affect; Age; American; Area; Behavioral; Caring; Child; Child Health; Child Rearing; Child health care; Collaborations; Communication; Communities; Complex; Data; Data Set; Developmental Disabilities; Diagnosis; Disparity; Equation; Ethnic Origin; Exclusion; Factor Analysis; Frequencies; Geographic Factor; Geographic Locations; Geography; Goals; Health; Health Personnel; Health Professional; Health Services Administration; Healthcare; Inequity; Investments; Measurement; Mediation; Medicaid eligibility; Medicaid services; Medical; Mental Health; Mental Health Services; Modeling; Neurodevelopmental Disability; Outcome; Parents; Pediatrics; Personal Satisfaction; Prevalence; Primary Care; Property; Protocols documentation; Provider; Qualifying; Race; Reporting; Role; Rural; Sampling; Services; Severities; Social isolation; Standardization; Statutes and Laws; Stress; Surveys; Testing; Underserved Population; United States Dept. of Health and Human Services; United States Health Resources and Services Administration; Variant; autism spectrum disorder; autistic children; care coordination; caregiving; disability; health care availability; health care delivery; health care disparity; health data; health equity; health equity promotion; health plan; health professional shortage areas; marginalized population; primary care provider; response; service coordination; social stigma; sociodemographic factors; sociodemographics; urban area

Project Summary The overall goal of this proposal is to determine the influence of autism spectrum disorder (ASD) care coordination services on parent health and stress according to geographic and sociodemographic factors. Specifically, the aims of this study are to establish an assessment of ASD severity that reflects co-occurring conditions, determine the impact of care coordination on the association between child ASD and parent outcomes, and delineate variation in the impact of care coordination on parent outcomes by sociodemographic influences, (i.e., race/ethnicity, rural/urban areas, Health Professional Shortage Areas). To achieve the aims of this proposal, we will merge the 2016-2019 National Survey of Children’s Health (NSCH) to create the largest, nationally representative dataset that includes child, parent, and healthcare-related variables. The combined sample includes 3,313 parents of children with a current ASD diagnosis. The Health Resources and Services Administration (HRSA) designations of primary care and mental health HPSAs will be analyzed to evaluate the interrelation of multi-level ASD influences from a health equity framework. A moderated- mediation model of ASD care coordination will be used to test for sociodemographic interaction effects (i.e., moderation) in the degree to which care coordination explains the association between ASD complexity and parent health and stress (i.e., mediation). Completion of these aims will provide a direct response to federal initiatives to standardize and evaluate child healthcare coordination. The Medicaid Services Investment and Accountability Act (MSIAA) of 2019 will allow states to offer optional benefits that include care coordination services for Medicaid-eligible children with medically complex conditions beginning in 2022. Qualifying conditions under the MSIAA includes only “severe autism”, which excludes children with mild or moderate autism that may have multiple other co-occurring conditions. Further, there is broad inter-state variability in the availability and requirements for care coordination offered in available health plans (Barth, 2019). The Department of Health and Human Services (2020) is currently attempting to evaluate best practices in care coordination among out-of-state providers for children with medically complex conditions, as not all states allow the service. Our findings will contribute to initiatives for community-informed ASD care coordination.

项目摘要 该提案的总体目标是确定自闭症谱系障碍的影响 （ASD）关于父母健康和压力的护理协调服务，根据地理和压力 社会人口统计学因素。特别是，本研究的目的是建立评估 反映同时发生条件的ASD严重程度，确定护理协调对 儿童ASD与父母结果之间的关联，并描述影响的变化 社会人口统计学影响（即种族/种族）对父母结果的护理协调 粗糙/城市地区，卫生专业短缺地区）。 为了实现该提案的目的，我们将合并2016 - 2019年全国儿童调查 健康（NSCH）创建最大的全国代表性数据集，其中包括儿童， 父母和与医疗保健相关的变量。组合样本包括3,313个父母 当前ASD诊断的儿童。卫生资源和服务管理 （HRSA）将分析初级保健和心理健康HPSA的名称，以评估 多级ASD的相互关系来自健康平等框架的影响。一个主持 - ASD护理协调的调解模型将用于测试社会人口统计学互动 效果（即节制）在护理协调的程度上解释关联的程度 在ASD的复杂性与父母健康和压力之间（即调解）之间。 这些目标的完成将直接回应联邦倡议，以标准化和 评估儿童医疗保健协调。医疗补助服务投资和问责制 2019年的ACT（MSIAA）将允许各州提供包括护理协调在内的可选福利 从2022年开始，为具有医疗辅助病情的儿童提供的服务。 MSIAA下的合格条件仅包括“严重自闭症”，不包括儿童 具有轻度或中度自闭症，可能具有其他多个同时发生的条件。此外， 国家的可用性和护理协调要求有广泛的变异性 提供可用的健康计划（Barth，2019年）。卫生与公共服务部 （2020年）目前正在尝试评估州外护理协调的最佳实践 具有医学上复杂条件的儿童的提供者，并非所有州都允许服务。我们的 调查结果将有助于为社区信息的ASD护理协调提供倡议。