Test of an Innovative, Scalable Support Program for Parents with a Young Child Recently Diagnosed with Autism Spectrum Disorder

针对最近被诊断患有自闭症谱系障碍的幼儿的父母测试创新的、可扩展的支持计划

• 批准号: 10197178
• 负责人: MARK Ethan FEINBERG
• 金额: $ 66.99万
• 依托单位: PENNSYLVANIA STATE UNIVERSITY, THE
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-06-17 至 2025-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10197178
• 关键词: Address; Aggressive behavior; Anxiety; Behavioral; Birth; Characteristics; Child; Child Behavior; Child Rearing; Conflict (Psychology); Country; Data; Diagnosis; Disease; Early Intervention; Environment; Family; Family Relationship; Family Violence; Financial Hardship; Foundations; Health Services Accessibility; Healthcare; Home; Home visitation; Individual; Intervention; Life; Mediating; Medical; Mental Depression; Mental Health; Mentors; Modeling; Monitor; Outcome; Parents; Pathway interactions; Patient Recruitments; Problem behavior; Procedures; Process; Quality of life; Randomized; Reporting; Schools; Self Efficacy; Services; Social Work; South Carolina; Strategic Planning; Stress; Structure; Syndrome; Testing; Training; Voice; Work; autism spectrum disorder; autistic children; cohort; cost; cost effective; design; evidence base; family support; flexibility; follow-up; health care service; high risk population; improved; innovation; parental influence; peer coaching; peer support; preventive intervention; primary outcome; programs; randomized trial; recruit; secondary outcome; skills; stressor; treatment program

Abstract Improving the family environment, service access, and behavioral adjustment of children with Autism Spectrum Disorder (ASD) has high relevance both for the children and their families as well as for health care and service payors. Family environment is a critical influence on ASD children’s adjustment: Poor parent adjustment increases behavior problems in ASD children, reduces parents’ capacity to access and adhere to critical services, and dampens or eliminates the benefits of early intervention. However, due to the stressors of navigating ASD-related and medical services, as well as managing child behavior challenges, parents of children with ASD report low levels of individual and couple adjustment. Parents report high levels of depression and anxiety, and low levels of parental efficacy and couple relationship quality compared to parents of typically developing children. To address the dual needs of parents for support in navigating ASD services and maintaining positive family functioning, we propose to test Autism Parent Navigators (APN), an innovative in-home, peer support model for parents with a young child recently diagnosed with ASD. APN was designed to be feasible and scalable by relying on parent peer mentors to conduct sessions. Extensive pilot work over the past 3 years has generated evidence of feasibility, acceptability, and impact. This pilot work has allowed us to fine-tune the parent mentor training, participant recruitment, delivery, and fidelity monitoring procedures. Aim 1. To assess the efficacy of APN in a randomized trial with 180 families. Aim 2. To test the mediating pathways through which APN impacts outcomes: We will test whether impact on proximal targets (ASD-related appraisals; coparenting; parent self-efficacy about accessing services; and peer mentor support) influence parent mental health, parenting, and treatment engagement, and if these in turn influence child outcomes. Aim 3. To assess whether baseline parent characteristics (financial stress, mental health, relationship conflict), child characteristics, or program processes (fidelity, parent engagement) moderate outcomes.

摘要 改善儿童的家庭环境、服务获得和行为调整 自闭症谱系障碍(ASD)与儿童及其家庭都有很高的相关性 以及医疗保健和服务支付者。家庭环境是影响自闭症的关键因素 儿童适应：父母适应不良会增加自闭症儿童的行为问题， 降低父母获得和坚持关键服务的能力，并抑制或消除 早期干预的好处。然而，由于浏览与ASD相关的和 医疗服务，以及管理儿童行为挑战，患有自闭症儿童的父母 报告个人和夫妇的低水平调整。父母报告抑郁程度较高 和焦虑，以及低水平的父母效能和夫妻关系质量 典型发育儿童的父母。要解决父母在支持方面的双重需求 浏览自闭症服务并保持积极的家庭功能，我们建议测试自闭症 Parent Navigator(APN)，一种创新的家庭内同伴支持模式，适用于有年幼子女的父母 最近被诊断出患有自闭症的孩子。APN被设计为可行且可扩展，它依赖于 家长同龄人指导课程。在过去3年中，广泛的试点工作 产生了可行性、可接受性和影响力的证据。这项试点工作使我们能够 微调家长导师培训、参与者招募、交付和忠诚度监控 程序。 目的1.通过一项包含180个家庭的随机试验，评估急性早幼粒细胞白血病的疗效。目标2.测试 APN影响结局的中介途径：我们将测试对 近端目标(ASD相关评估；合作；父母关于访问的自我效能 服务；和同伴指导支持)影响父母的心理健康、育儿和治疗 参与，如果这些反过来影响孩子的结果。目标3.评估基线是否 父母特征(经济压力、心理健康、关系冲突)、子女特征、 或项目流程(忠诚度、父母参与度)结果适中。