Developing an Intervention Model for Complex Communication Needs in Rett Syndrome

开发针对雷特综合症复杂沟通需求的干预模型

• 批准号: 9179486
• 负责人: JENNIFER J MCCOMAS
• 金额: $ 21.97万
• 依托单位: UNIVERSITY OF MINNESOTA
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-01 至 2018-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9179486
• 关键词: Address; Affect; Augmentative and Alternative Communication; Behavior; Behavior Therapy; Caregivers; Caring; Child; Chronic; Cognitive; Communication; Communication Disability; Communications Media; Complex; Crying; Daughter; Development; Developmental Disabilities; Disease; Effectiveness; Evidence based practice; Experimental Designs; Eye; Family; Female; Genetic; Goals; Guidelines; Happiness; Incidence; Individual; Intervention; Knowledge; Lead; Link; Longitudinal Studies; Mission; Modeling; Motor; National Institute on Deafness and Other Communication Disorders; Neurodevelopmental Disability; Neurodevelopmental Disorder; Outcome; Parents; Participant; Persons; Phase; Population; Probability; Provider; Psychological reinforcement; Public Health; Quality of life; Reporting; Research; Research Personnel; Rett Syndrome; Services; Statistical Data Interpretation; Testing; Training; United States National Institutes of Health; Validation; Woman; abstracting; base; disability; evidence base; experience; girls; improved; indexing; innovation; multiple disability; programs; reinforcer; scale up; skills; social; standard of care; therapy development

Project Summary/Abstract Despite intensive focus and advances in understanding the genetics of Rett syndrome (RTT), there remains a strikingly absent evidence base to guide applied interventions targeting communication. Our long- term goals are to develop best practices for improvement in communication outcomes and quality of life in individuals with RTT and other similar disorders and to overcome barriers to service delivery. The objectives of this application are to develop a model of reinforcement-based intervention for improving the communicative outcomes and indicators of quality of life for girls and women with RTT, and to broaden our impact through the use of telepresence to reach a larger number of girls and women than would otherwise be feasible. Through findings from our preliminary research, these objectives operate from the central hypothesis that girls and women with RTT have the capacity to communicate, and that they will use idiosyncratic behaviors to communicate in the absence of systematic intervention. We plan to test this central hypothesis through the following two specific aims: (1) to develop a reinforcement-based intervention model that addresses the complex communicative needs in RTT and (2) to evaluate telepresence as an innovative service delivery mechanism for supporting/delivering communication intervention in RTT. We will address these aims through rigorous within-subject experimental designs and group statistical analysis of a three-phase analysis and intervention sequence with at least 24 girls and women with RTT. Our study will contribute evidence-based communication intervention guidelines for individuals with RTT by setting a standard of care for individuals with RTT and related complex communication needs, it will lay the foundational scientific understanding of the efficacy of reinforcement-based intervention with this population and others with complex communication needs, and it will demonstrate the effective use of telepresence which will vastly expand capacity to deliver effective care (nationally, internationally) for communication needs to individuals affected by RTT and their families. Our proposal is innovative, in our opinion, because it rejects the supposition that individuals with RTT do not possess the developmental level necessary to acquire intentional communication skills and instead, uses telepresence as a vehicle for reaching families affected by RTT to provide reinforcement-based intervention to develop communication skills and, in turn, improve quality of life.

项目概要/摘要 尽管人们对 Rett 综合征 (RTT) 的遗传学进行了深入的关注并取得了进展，但 仍然缺乏指导针对沟通的应用干预措施的证据基础。我们的长期 长期目标是开发最佳实践，以改善沟通结果和生活质量 患有 RTT 和其他类似疾病的个人，并克服提供服务的障碍。的目标 该应用程序旨在开发一种基于强化的干预模型，以改善沟通能力 患有 RTT 的女孩和妇女的生活质量结果和指标，并通过以下方式扩大我们的影响： 使用远程呈现来覆盖比其他方式更多的女孩和妇女。通过 根据我们的初步研究结果，这些目标的运作基于这样一个中心假设：女孩和 患有RTT的女性有沟通的能力，并且她们会用特殊的行为来表达 在没有系统干预的情况下进行沟通。我们计划通过 以下两个具体目标：（1）开发基于强化的干预模型来解决 RTT 中复杂的通信需求以及 (2) 评估网真作为一种创新服务交付 支持/提供 RTT 中通信干预的机制。我们将通过以下方式实现这些目标 严格的受试者内实验设计和三相分析的组统计分析 对至少 24 名患有 RTT 的女孩和妇女进行干预序列。我们的研究将提供基于证据的 通过为 RTT 患者制定护理标准，为 RTT 患者制定沟通干预指南 RTT 和相关的复杂通信需求，将为对 RTT 的科学理解奠定基础 对这一人群和其他具有复杂沟通的人群进行基于强化的干预的有效性 需求，它将展示远程呈现的有效使用，这将极大地扩展交付能力 有效照顾（国内、国际）受 RTT 影响的个人的沟通需求及其 家庭。我们认为，我们的提议是创新的，因为它拒绝了 RTT 个体的假设 不具备获得有意沟通技能所需的发展水平，相反， 使用远程呈现作为接触受 RTT 影响的家庭的工具，以提供基于强化的服务 干预以培养沟通技巧，进而提高生活质量。