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Use of Augmentative and Alternative Communication by Individuals with Rett Syndrome Part 1: Page-Linking. Rett综合征患者使用补充性和替代性交流。第1部分:页面链接
IF 1.8 4区 医学 Q2 Health Professions Pub Date : 2024-02-01 Epub Date: 2023-04-10 DOI: 10.1007/s10882-023-09903-x
Shawn N Girtler, Emily K Unholz-Bowden, Alefyah Shipchandler, Rebecca L Kolb, Jennifer J McComas

Although the last decade has welcomed evidence that individuals with Rett syndrome (RTT) can communicate using alternative and augmentative communication (AAC), less is known about effective procedures for teaching various component skills required for expressive communication of individuals with complex communication needs. The purpose of the current study was to evaluate the effects of systematic individualized instruction procedures on the page-linking skills of individuals with RTT. A nonconcurrent multiple baseline design across participants was used to evaluate independent and accurate responding utilizing both a high-tech and low-tech AAC device for three participants. All sessions were conducted in the participants' homes by their parents with remote coaching from a researcher via telehealth. Results indicated that for all three participants, individualized procedures that included behavior chaining, differential reinforcement, and delayed prompting were effective for teaching page-linking in both a high-tech and a low-tech AAC device. Directions for future research and practice are discussed.

尽管在过去十年中,有证据表明雷特综合症(RTT)患者可以使用替代性和辅助性交流(AAC)进行交流,但人们对教授有复杂交流需求的患者表达性交流所需的各种组件技能的有效程序却知之甚少。本研究旨在评估系统化个性化教学程序对 RTT 患者页面链接技能的影响。本研究采用非并发多基线设计,对三名参与者使用高科技和低科技 AAC 设备进行独立和准确应答的情况进行评估。所有课程均由参与者的父母在家中进行,研究人员通过远程医疗进行远程指导。结果表明,对所有三名参与者而言,包括行为链、差异强化和延迟提示在内的个性化程序对在高科技和低科技辅助交流设备上教授页面链接都很有效。本文讨论了未来研究和实践的方向。
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引用次数: 0
The Limits and Contributions of Formal Support: Service Providers’ Perspectives on Balancing Formal and Natural Support for People with Disabilities and their Families in Canada 正规支持的局限与贡献:服务提供者关于平衡对加拿大残疾人及其家庭的正式和自然支持的观点
IF 1.8 4区 医学 Q2 Health Professions Pub Date : 2024-01-02 DOI: 10.1007/s10882-023-09944-2

Abstract

Evidence suggests that integrated support, combining both natural and formal supports, is often essential for individuals with developmental disabilities to achieve their preferred quality of life. However, studies are limited on how to organize supports so that people with developmental disabilities and their families find a balance between formal and natural supports. Often, there are systemic and personal boundaries around the nature and extent of support that can be offered to persons with developmental disabilities through formal mechanisms, yet the value of natural supports in the lives of persons with developmental disabilities is often undervalued in society. Therefore, the objectives of this study were to explore formal support providers’ perspectives on (a) the unique skillsets and attributes of natural support providers and formal support providers; and (b) how we might best enable both natural and formal supports for persons with developmental disabilities and their families. Following a qualitative approach, we interviewed 16 formal support providers working with adults with developmental disabilities and their families via Zoom. We analyzed data using thematic analysis. We organized results into three themes: the role of natural supports, the role of formal supports, and strategies to best configure a system of supports. Results imply that there is a need for investment of funding to incentivize both support structures for adults with developmental disabilities and their families. Future studies should explore the perspectives from people with developmental disabilities and their natural support providers.

摘要 有证据表明,综合支持(将自然支持和正规支持结合在一起)对于发育障碍人士达到他们所期望的生活质量往往是至关重要的。然而,关于如何组织支持以帮助发育障碍人士及其家人在正规支持和自然支持之间找到平衡的研究却很有限。通常情况下,通过正规机制为发育障碍人士提供的支持在性质和程度上都存在系统和个人界限,但自然支持在发育障碍人士生活中的价值往往被社会低估。因此,本研究的目标是探讨正规支持提供者对以下问题的看法:(a)自然支持提供者和正规支持提供者的独特技能组合和属性;以及(b)我们如何才能最好地为发育障碍人士及其家庭提供自然和正规支持。我们采用定性方法,通过 Zoom 访问了 16 位为发育障碍成人及其家庭服务的正规支持者。我们使用主题分析法对数据进行了分析。我们将结果归纳为三个主题:自然支持的作用、正规支持的作用以及支持系统的最佳配置策略。研究结果表明,有必要投入资金来激励发育障碍成人及其家庭的支持结构。未来的研究应探讨发育障碍人士及其自然支持提供者的观点。
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引用次数: 0
Teaching Cooperation to Children with Autism during Play 在游戏中教自闭症儿童学会合作
IF 1.8 4区 医学 Q2 Health Professions Pub Date : 2024-01-02 DOI: 10.1007/s10882-023-09945-1
Chengan Yuan, Lanqi Wang, Zuxuan Huo, Qiuyu Min

The present study aimed to examine the effectiveness of a multi-component intervention on cooperative behaviors in children with autism spectrum disorder (ASD). In this study, three dyads comprising six boys aged between 4.5 and 7 years with ASD participated, following a randomized multiple baseline design. The participants were asked to construct models together using toy sets. The visual analysis and randomization test (p < .01) showed that the intervention increased cooperative behaviors for all six participants, and improvements were maintained after the intervention components were terminated. Four participants in two dyads demonstrated generalization to three new toy sets. For the remaining two participants, the interdependent group contingency was reintroduced in order for them to demonstrate cooperative behaviors.

本研究旨在考察多成分干预对自闭症谱系障碍(ASD)儿童合作行为的有效性。在这项研究中,六个年龄在 4.5 岁至 7 岁之间的自闭症谱系障碍男孩组成的三个二人组参与了这项研究,并采用了随机多重基线设计。研究人员要求参与者使用玩具套装共同构建模型。视觉分析和随机化检验(p <.01)表明,干预措施增加了所有六名参与者的合作行为,并且在干预措施结束后,合作行为的改善仍得以保持。两个二人组中的四名参与者表现出了对三套新玩具的泛化。对于其余两名参与者,为了让他们表现出合作行为,我们重新引入了相互依赖的小组应急措施。
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引用次数: 0
Teaching Requesting to Individuals with Rett Syndrome Using Alternative Augmentative Communication (AAC) Through Caregiver Coaching via Telehealth. 通过远程医疗护理人员指导,使用替代增强沟通(AAC)对Rett综合征患者的教学要求
IF 1.8 4区 医学 Q2 Health Professions Pub Date : 2023-12-01 Epub Date: 2023-03-21 DOI: 10.1007/s10882-023-09894-9
Rebecca L Kolb, Jennifer J McComas, Shawn N Girtler, Jessica Simacek, Adele F Dimian, Emily K Unholz-Bowden, Alefyah H Shipchandler

Rett syndrome is a severe neurodevelopmental disorder that results in both motor and language skill regression with a wide range of severity in symptom presentation. Communication intervention may be particularly challenging for this population due to the decline in speech, motor skills, and motor planning difficulties that characterize the disorder (Townend et al., 2020), often resulting in the need for augmentative and alternative communication (AAC) technology. Very limited research has evaluated communication interventions for individuals with Rett syndrome and even fewer have targeted expressive communication, an important skill required for improved autonomy and quality of life (Sigafoos et al., 2009; Townend et al., 2020). The current study sought to systematically replicate the Simacek et al. (2017) mand training procedures to teach three girls with Rett Syndrome to use AAC to make requests through caregiver coaching by researchers via telehealth. Results suggest that mand training was successful in increasing AAC use for all three participants. Barriers to intervention for this population and implications of results for future research and clinical practice are discussed.

Rett综合征是一种严重的神经发育障碍,导致运动和语言技能退化,症状表现的严重程度不一。由于言语、运动技能和运动规划困难的下降(Townend et al., 2020),沟通干预对这一人群来说可能特别具有挑战性,这往往导致需要辅助和替代沟通(AAC)技术。非常有限的研究评估了Rett综合征患者的沟通干预措施,针对表达性沟通的研究就更少了,表达性沟通是提高自主性和生活质量所需的重要技能(Sigafoos等人,2009;Townend et al., 2020)。目前的研究试图系统地复制Simacek等人(2017)的培训程序,教三名患有Rett综合征的女孩通过研究人员通过远程医疗指导护理人员使用AAC提出请求。结果表明,mand培训成功地增加了所有三名参与者的AAC使用。对这一人群的干预障碍和结果对未来研究和临床实践的影响进行了讨论。
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引用次数: 1
Supporting Families: Formal HCBS Supports for Informal Family Caregivers of People with IDD 支持家庭:正式HCBS为IDD患者的非正式家庭照顾者提供支持
IF 1.8 4区 医学 Q2 Health Professions Pub Date : 2023-11-27 DOI: 10.1007/s10882-023-09942-4
Carli Friedman

Unpaid (informal) family caregivers provide vitally important supports to people with intellectual and developmental disabilities (IDD), but receive little support or training. This study’s aim was to examine how states across the nation supported informal family caregivers in their Medicaid Home- and Community-Based Services (HCBS) programs for people with IDD. To do so, I examined fiscal year (FY) 2021 Medicaid HCBS 1915(c) IDD waivers to determine trends in how they allocated respite, family support services, and family training and counseling, and how they permitted paying family caregivers to provide services. HCBS waivers provided respite services to relieve unpaid caregivers, family support services to relieve caregivers and enhance family functioning, and family training and counseling services to strengthen caregiver abilities and self-efficacy. In FY2021, states projected spending $947.4 million on respite services for 174,406 people with IDD, $433.3 million on family support services for 14,159 people with IDD, and $9.3 million for family training and counseling services for 8,744 people with IDD. In addition, states also supported family caregivers by allowing them to be paid to provide certain HCBS services to their family members with IDD; 1,843 HCBS services, or approximately half of HCBS services in FY2021, allowed family members to be paid to provide services to people with IDD. Through integrated supports, states can maximize the quality of life of both people with IDD and their families.

无薪(非正式)家庭照料者为智力和发育障碍者提供了至关重要的支持,但却很少得到支持或培训。本研究的目的是研究全国各州如何在其医疗补助家庭和社区服务(HCBS)项目中支持IDD患者的非正式家庭照顾者。为此,我检查了2021财政年度(FY)医疗补助HCBS 1915(c) IDD豁免,以确定他们如何分配喘息,家庭支持服务,家庭培训和咨询的趋势,以及他们如何允许支付家庭照顾者提供服务。HCBS豁免提供临时服务,以减轻无薪照顾者的负担;提供家庭支持服务,以减轻照顾者的负担,增强家庭功能;提供家庭培训和咨询服务,以增强照顾者的能力和自我效能感。2021财年,各州预计为174,406名IDD患者提供9.474亿美元的临时服务,为14,159名IDD患者提供4.333亿美元的家庭支持服务,为8,744名IDD患者提供930万美元的家庭培训和咨询服务。此外,各州还支持家庭照护者,允许他们为患有IDD的家庭成员提供某些HCBS服务,从而获得报酬;1843个HCBS服务(约占2021财年HCBS服务的一半)允许家庭成员付费为IDD患者提供服务。通过综合支持,各州可以最大限度地提高缺碘症患者及其家人的生活质量。
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引用次数: 0
Technology-Based Physical Health Interventions for Adults with Intellectual Disability: A Scoping Review 基于技术的成人智力残疾身体健康干预:范围综述
IF 1.8 4区 医学 Q2 Health Professions Pub Date : 2023-11-23 DOI: 10.1007/s10882-023-09939-z
Melissa N. Savage, Tina A. Clark, Edward Baffoe, Alexandra E. Candelaria, Lola Aneke, Renee Gonzalez, Ali Al Enizi, Marisol Anguita-Otero, Keita Edwards-Adams, Lilliesha Grandberry, Stella Reed

Physical health habits including physical activity and nutrition are essential for numerous health benefits. However, beginning in childhood, individuals with intellectual disability engage in lower levels of physical activity and healthy nutrition habits compared to individuals without intellectual disability, a trend that carries on into adulthood. Researchers continue to examine the effectiveness of interventions to increase engagement in physical health habits and improve health outcomes for individuals with intellectual disability, with an increased focus on technology-based interventions. This scoping review aimed to describe how technology was being utilized within interventions to improve health-related outcomes for adults with intellectual disability. We described the technology being used, who used the technology, and the feasibility of the interventions. Forty-one studies met criteria, with a total of 698 adult participants with an intellectual disability. While no studies on nutrition were located, technology was used in various physical activity interventions, with the most common being preferred stimulus access, exergaming, and video-based instruction. Most studies took place at day or rehabilitation centers, were implemented by research teams, and either did not discuss cost or were vague in their description related to cost. Implications, limitations, and future research directions are discussed.

包括体育活动和营养在内的身体健康习惯对许多健康益处至关重要。然而,从童年开始,与没有智力残疾的人相比,智力残疾者从事的体育活动和健康的营养习惯水平较低,这一趋势一直持续到成年。研究人员继续研究干预措施的有效性,以增加对身体健康习惯的参与,改善智障人士的健康结果,并越来越关注基于技术的干预措施。本综述旨在描述在干预措施中如何利用技术来改善智力残疾成人的健康相关结果。我们描述了正在使用的技术,谁使用了这项技术,以及干预措施的可行性。41项研究符合标准,总共有698名智力残疾的成年参与者。虽然没有关于营养的研究,但技术被用于各种体育活动干预,最常见的是首选刺激通道,运动和基于视频的指导。大多数研究是在日间或康复中心进行的,由研究小组实施,要么没有讨论成本,要么对成本的描述含糊不清。讨论了研究的意义、局限性和未来的研究方向。
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引用次数: 0
The Effects of Artificial Intelligence on Implementors’ Fidelity of Instructional Strategies During Handwashing Acquisition in Children with Autism 人工智能对自闭症儿童洗手习得教学策略实施者保真度的影响
4区 医学 Q2 Health Professions Pub Date : 2023-11-15 DOI: 10.1007/s10882-023-09937-1
Brenna Griffen, Elizabeth R. Lorah, Nicolette Caldwell, Donald A. Hantula, John Nosek, Matt Tincani, Shea Lemley
Abstract Handwashing is a vital skill for maintaining health and hygiene. For individuals with intellectual and developmental disabilities (IDD), such as autism spectrum disorder, evidence-based strategies, such as prompting and task analysis, may be effective in teaching these skills. Due to the shortage of experts who teach individuals with IDD skills such as handwashing, staff working with children need a means of ensuring these instructional strategies are implemented with fidelity. This study examined the effects of a tablet-based application that used artificial intelligence (GAINS®) on four behavior technicians’ implementation of least-to-most prompting, total task chaining, and time delay during an acquisition of handwashing program with young children with autism. All four technicians increased fidelity immediately upon using GAINS and all four technicians reached mastery criteria within the shortest number of sessions possible. One child participant met mastery criteria, two showed some gains, and one demonstrated a high degree of variability across sessions. Limitations of the least-to-most prompting procedure, user design, considerations and directions for future research and practice are discussed.
洗手是保持健康和卫生的一项重要技能。对于患有智力和发育障碍(IDD)的个体,如自闭症谱系障碍,基于证据的策略,如提示和任务分析,可能有效地教授这些技能。由于缺乏教授个人洗手等缺碘症技能的专家,从事儿童工作的工作人员需要一种手段来确保这些教学策略得到忠实执行。本研究考察了使用人工智能(gain®)的平板电脑应用程序对四名行为技术人员实施最少到最多提示、总任务链和时间延迟的影响。所有四名技术人员在使用增益后立即提高了保真度,所有四名技术人员在尽可能短的会话数内达到了精通标准。一名儿童参与者达到了掌握标准,两名表现出了一些进步,还有一名表现出了不同阶段的高度差异。讨论了最小到最多提示过程的局限性、用户设计、注意事项以及未来研究和实践的方向。
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引用次数: 0
A Conceptual View of Expanding Person-Centered Thinking Approaches for Developing Personalized Integrated Supports for People with Disabilities and Their Families 拓展以人为本的思维方法为残疾人及其家庭提供个性化综合支持的概念观点
4区 医学 Q2 Health Professions Pub Date : 2023-11-11 DOI: 10.1007/s10882-023-09941-5
Michelle C. Reynolds, Mirian E. Ofonedu, Angelina Alpert
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引用次数: 0
Correction: Applied Behavior Analysis and Autism Spectrum Disorder in the Gulf Region in the Middle East 更正:中东海湾地区的应用行为分析和自闭症谱系障碍
4区 医学 Q2 Health Professions Pub Date : 2023-11-10 DOI: 10.1007/s10882-023-09935-3
Michelle P. Kelly, Ingy Alireza, Shariffah Azzaam, Lamis M. Baowaidan, Ahlam A. Gabr, Roqayyah Taqi, Sharifa N. Yateem
{"title":"Correction: Applied Behavior Analysis and Autism Spectrum Disorder in the Gulf Region in the Middle East","authors":"Michelle P. Kelly, Ingy Alireza, Shariffah Azzaam, Lamis M. Baowaidan, Ahlam A. Gabr, Roqayyah Taqi, Sharifa N. Yateem","doi":"10.1007/s10882-023-09935-3","DOIUrl":"https://doi.org/10.1007/s10882-023-09935-3","url":null,"abstract":"","PeriodicalId":47565,"journal":{"name":"Journal of Developmental and Physical Disabilities","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-11-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135092541","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Magic Mothers: How Parents of Children with Invasive Mechanical Ventilation Can Make Health System Crises Disappear 神奇的母亲:有创机械通气儿童的父母如何使卫生系统危机消失
4区 医学 Q2 Health Professions Pub Date : 2023-11-07 DOI: 10.1007/s10882-023-09936-2
Sarah A. Sobotka
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引用次数: 0
期刊
Journal of Developmental and Physical Disabilities
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