Testing a family service navigator program for low-resourced families of young children with autism spectrum disorder

测试针对患有自闭症谱系障碍幼儿的资源匮乏家庭的家庭服务导航计划

• 批准号: 10404555
• 负责人: Meghan Burke
• 金额: $ 24.08万
• 依托单位: UNIVERSITY OF ILLINOIS AT URBANA-CHAMPAIGN
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-05-12 至 2024-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10404555
• 关键词: Address; Adult; Advocacy; Area; Behavioral; Child; Clinic; Clinical; Clinical Trials; Cognitive; Communication; Data; Development; Disabled Children; Effectiveness; Eligibility Determination; Evidence based treatment; Face; Family; Follow-Up Studies; Frequencies; Grant; Health Services Accessibility; Improve Access; Individual; Instruction; Intervention; Interview; Knowledge; Learning; Low income; Mental Health; Modeling; Outcome; Parents; Participant; Patients; Population; Privatization; Provider; Randomized Controlled Trials; Reporting; Research; Resources; School-Age Population; Schools; Self Efficacy; Services; Societies; Strategic Planning; Supervision; Support System; Surveys; Symptoms; System; Technology; Testing; Trainers Training; Training; Unemployment; Use Effectiveness; adult with autism spectrum disorder; aged; arm; autism spectrum disorder; autistic children; base; care systems; child services; design; effectiveness implementation study; empowerment; experience; family support; implementation barriers; implementation outcomes; improved; improved functioning; individuals with autism spectrum disorder; offspring; programs; psychologic; repository; service delivery; service utilization; shift work; skills; testing services; training project; usability; volunteer

Annually, over 11.5 billion dollars are spent on services for individuals with autism spectrum disorder (ASD). Services for young (aged 3-5) children with ASD are critical as the appropriate mix of services based on evidence-based treatments leads to improved child outcomes. Multiple service delivery systems offer services to children with ASD; there is no unified system of care putting the onus on parents to identify and coordinate services for their offspring with ASD. Parents of young children with ASD struggle to access needed services due to the differing eligibility criteria and norms of service delivery systems. Service disparities are compounded among low-resourced families of children with ASD who face greater barriers in accessing services for their offspring. Family service navigators (FSNs) may support low-resourced families of young children with ASD to identify, access, and use needed services for their children with ASD. The patient navigator model has proven effective in other populations. Also, the Train-the-Trainer model (e.g., training parents of children with ASD to support other parents of children with ASD) has preliminary evidence of feasibility and effectiveness among low-resourced families of children with ASD. Accordingly, using an effectiveness-implementation hybrid design (Type 1), this project has three aims: (1) to iteratively create the Service Navigator for Autism Project (SNAP) and a Technology-Based Treatment Support System (TSS) to develop FSNs (i.e., low-resourced parents of children with ASD who will support low-resourced parents of young children with ASD); (2) to test the SNAP and TSS with respect to intervention target and implementation outcomes; and (3) to determine the impact of FSNs on intervention targets, and implementation, service and clinical outcomes for young children with ASD from English and Spanish-speaking, low-resourced families. The SNAP will reflect both a patient navigator model and TTT framework. To do this, an Advisory Board of professionals, 10 low-resourced parents of children with ASD, and ASD experts will help develop the SNAP and the TSS. A single-arm survey study will be conducted to determine the effect of the SNAP and TSS on intervention targets (i.e., knowledge, advocacy, skills, empowerment, ability to facilitate knowledge, self- efficacy, and capacity) and implementation outcomes (i.e., feasibility, fidelity, acceptability, usability, and barriers to implementation). For the third aim, a developmental pilot RCT will be conducted to determine the impact of the FSNs on intervention targets and implementation, service delivery and clinical outcomes of young children with ASD from low-resourced families. Data generated from this study will help launch a larger, clinical trial potentially with a effectiveness-implementation hybrid design (Type 2) to determine the effect of FSNs on intervention targets, and implementation, service delivery and clinical outcomes leading to reduced service disparities among young children with ASD from low-resourced families. Ultimately, this research will lead to a cadre of FSNs who will improve access and functioning of young children with ASD from marginalized families.

每年，超过115亿美元用于自闭症谱系障碍（ASD）患者的服务。 为患有ASD的幼儿（3-5岁）提供服务至关重要，因为基于以下因素的适当服务组合 循证治疗有助于改善儿童的预后。多个服务交付系统提供服务 自闭症儿童;没有统一的护理系统，让父母承担识别和协调的责任 为患有自闭症谱系障碍的后代提供服务。患有ASD的幼儿的父母努力获得所需的服务 这是由于服务提供系统的资格标准和规范不同。服务差距是 在资源匮乏的ASD儿童家庭中， 为他们的后代服务。家庭服务导航员（FSN）可以支持年轻人的低资源家庭 ASD儿童识别，获得和使用ASD儿童所需的服务。患者 导航器模型在其他人群中被证明是有效的。此外，培训师培训模型（例如，培训 ASD儿童的父母支持其他ASD儿童的父母）有初步证据表明， 在资源匮乏的ASD儿童家庭中的可行性和有效性。因此，使用 有效性-实现混合设计（类型1），该项目有三个目标：（1）迭代创建 自闭症服务导航项目（SNAP）和基于技术的治疗支持系统（TSS）， 开发FSN（即，ASD儿童的低资源父母，他们将支持 测试SNAP和TSS的干预目标和实施情况 （3）确定FSN对干预目标的影响，以及实施，服务和 来自讲英语和西班牙语的低资源家庭的ASD幼儿的临床结果。的 SNAP将反映患者导航器模型和TTT框架。为此，一个咨询委员会 专业人士，10名ASD儿童的低资源父母和ASD专家将帮助开发SNAP 和TSS。将进行一项单臂调查研究，以确定SNAP和TSS对 干预目标（即，知识、宣传、技能、赋权、促进知识的能力、自我 效率和能力）和执行成果（即，可行性、保真度、可接受性、可用性，以及 执行障碍）。为了实现第三个目标，将进行一项发展试点随机对照试验，以确定 FSNs对干预目标和实施，服务提供和年轻人的临床结果的影响 来自贫困家庭的自闭症儿童。从这项研究中产生的数据将有助于启动一个更大的， 试验可能采用有效性-实施混合设计（2型），以确定FSN对 干预目标、实施、服务提供和导致服务减少的临床结果 来自低资源家庭的ASD幼儿之间的差异。最终，这项研究将导致一个 FSN的骨干，他们将改善来自边缘化家庭的ASD幼儿的获得和功能。