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 这项提案的总体目标是确定自闭症谱系障碍的影响 (ASD)按地理和性别分列的关于父母健康和压力的护理协调服务 社会人口因素。具体而言，本研究的目的是评估 ASD的严重程度，反映共同发生的条件，确定护理协调的影响， 儿童ASD和父母结果之间的关联，并描述影响 护理协调对父母结果的社会人口影响，（即，种族/民族， 农村/城市地区、卫生专业人员短缺地区）。 为了实现这一提案的目标，我们将把2016-2019年全国儿童健康调查与2019年全国儿童健康调查合并， 健康（NSCH）创建最大的，全国代表性的数据集，包括儿童， 父母和医疗保健相关变量。合并样本包括3，313名父母， 目前诊断为ASD的儿童。卫生资源和服务管理局 （HRSA）指定的初级保健和精神卫生HPSA将进行分析，以评估 从健康公平框架的多层次ASD影响的相互关系。一个温和的- ASD护理协调的中介模型将用于测试社会人口学相互作用 效果（即，适度）在护理协调的程度上解释了 ASD复杂性与父母健康和压力之间的关系（即，调解）。 这些目标的实现将直接响应联邦关于标准化和 评估儿童保健协调。医疗补助服务投资和问责制 2019年的MSIAA法案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，为符合医疗补助条件的患有复杂疾病的儿童提供服务。 MSIAA下的合格条件仅包括“严重自闭症”，不包括儿童 患有轻度或中度自闭症，可能有多种其他并发症。此外，本发明还 在护理协调的可用性和要求方面存在广泛的州际差异 在现有的健康计划中提供（Barth，2019）。美国卫生与公众服务部 （2020年）目前正试图评估州外护理协调的最佳做法 医疗条件复杂的儿童的医疗服务提供者，因为不是所有国家都允许这项服务。我们 研究结果将有助于社区知情ASD护理协调的举措。