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

每年，超过115亿美元用于自闭症谱系障碍(ASD)患者的服务。 为患有自闭症的幼儿(3-5岁)提供的服务至关重要，因为适当的服务组合基于 循证治疗可改善儿童结局。多个服务交付系统提供服务 对于患有自闭症的儿童；没有统一的照顾系统，让父母承担识别和协调的责任 为患有自闭症的后代提供服务。患有自闭症的幼儿的父母难以获得所需的服务 由于服务提供系统的资格标准和规范不同。服务差异有 在自闭症儿童的低资源家庭中情况复杂，这些家庭在获取自闭症方面面临更大的障碍 为他们的后代提供服务。家庭服务导航员(FSN)可以支持资源匮乏的年轻家庭 帮助患有自闭症的儿童识别、获取和使用自闭症儿童所需的服务。病人 导航者模型在其他种群中被证明是有效的。此外，培训教员模式(例如，培训 患有自闭症儿童的父母支持患有自闭症儿童的其他父母)有初步证据表明 在ASD儿童低资源家庭中的可行性和有效性。因此，使用 有效性-实施混合设计(类型1)，本项目有三个目标：(1)迭代地创建 孤独症服务导航器项目(SNAP)和基于技术的治疗支持系统(TSS) 发展FSN(即，ASD儿童的低资源父母，他们将支持低资源的父母 儿童自闭症)；(2)测试SNAP和TSS干预目标和实施情况 结果；以及(3)确定FSNs对干预目标的影响，以及实施、服务和 来自英语和西班牙语低资源家庭的自闭症儿童的临床结果。这个 Snap将同时反映患者导航器模型和TTT框架。为了做到这一点，一个由 专业人员、10名患有自闭症儿童的低资源父母和自闭症专家将帮助开发SNAP 和TSS。将进行一项单一调查研究，以确定SNAP和TSS对以下方面的影响 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)和实施成果(即可行性、保真度、可接受性、可用性和 实施障碍)。对于第三个目标，将进行一项发展试点RCT，以确定 家庭卫生服务对青少年干预目标和实施、服务提供和临床结局的影响 来自低资源家庭的自闭症儿童。这项研究产生的数据将有助于启动更大规模的临床 可能采用有效性-实施混合设计(类型2)的试验，以确定FSN对 干预目标、实施、服务交付和导致服务减少的临床结果 来自低资源家庭的自闭症儿童之间的差异。最终，这项研究将导致 将改善边缘化家庭中患有自闭症的幼儿的机会和功能。

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.