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Facilitators and barriers to developing romantic and sexual relationships: lived experiences of people with complex communication needs 发展浪漫关系和性关系的促进因素和障碍:有复杂沟通需求的人的生活经历
IF 2 3区 医学 Q1 AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY Pub Date : 2022-01-02 DOI: 10.1080/07434618.2022.2046852
Darryl Sellwood, P. Raghavendra, Ruth Walker
Abstract The aims of this study were to investigate the lived experiences of people with complex communication needs in developing romantic and sexual relationships, and identify and explore barriers and facilitators they encountered in pursuing these relationships. For the study, nine participants were interviewed. All were at least 21-years-old, used augmentative and alternative communication, and had physical and communication disabilities since childhood. A methodology employing critical hermeneutics, a form of interpretive phenomenology, and Feminist Standpoint Theory was utilized. The World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) model (2013) was used to develop questions for the semi-structured interviews. Interview data were analyzed using reflexive thematic analysis, with the ICF model and the concept of ableism used to identify four main themes: (a) Attitudes of others (ableism), (b) Communication Within Intimate Moments, (c) Assistance of Support Workers, and (d) Additional Education Related to Sexuality and Disability. Most of the barriers participants encountered related to ableist attitudes they experienced from others. Facilitators included creative communication strategies for intimate moments and using dating websites. The participants’ experiences bring attention to the need for changes in policies, practice, and research to further support people with complex communication needs in their quest to develop intimate relationships.
摘要本研究旨在探讨具有复杂沟通需求的人群在发展恋爱关系和性关系时的生活经历,并识别和探索他们在追求这些关系时遇到的障碍和促进因素。在这项研究中,九名参与者接受了采访。所有人都至少21岁,使用辅助和替代沟通,从小就有身体和沟通障碍。运用了批判解释学、解释现象学和女权主义立场理论的方法论。使用世界卫生组织(世卫组织)国际功能、残疾和健康分类模型(2013年)为半结构化访谈制定问题。访谈数据使用反身性专题分析进行分析,ICF模型和残疾歧视概念用于确定四个主要主题:(a)他人的态度(残疾歧视),(b)亲密时刻的沟通,(c)支持工作者的援助,以及(d)与性和残疾有关的额外教育。参与者遇到的大多数障碍与他们从其他人那里经历的体能主义态度有关。促进因素包括亲密时刻的创造性沟通策略和使用约会网站。参与者的经历使人们注意到需要改变政策、实践和研究,以进一步支持有复杂沟通需求的人发展亲密关系。
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引用次数: 3
The development of a core key word signing vocabulary (Lámh) to facilitate communication with children with down syndrome in the first year of mainstream primary school in Ireland 爱尔兰主流小学一年级的核心关键词手语词汇(Lámh)的发展,以促进与唐氏综合症儿童的沟通
IF 2 3区 医学 Q1 AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY Pub Date : 2022-01-02 DOI: 10.1080/07434618.2022.2050298
Pauline Frizelle, Caoimhe Lyons
Abstract Key word signing, an unaided augmentative, and alternative communication (AAC) system is commonly used by children with Down syndrome who attend mainstream primary schools. To ensure the successful use of key word signing within a mainstream environment, a meaningful, contextually appropriate sign vocabulary must be available to all communication partners. The aim of this study was to develop a core school-based key word signing vocabulary to facilitate effective communication between children with Down syndrome and their communication partners in the first year of mainstream primary school. Four key groups—participants with Down syndrome, their peers, teachers, and special needs assistants—and a speech-language pathologist contributed to the vocabulary over the course of an academic year, through observations, semi-structured interviews, and guided tours of the school environment. Based on criteria of frequency and commonality, 140 words were considered to be core vocabulary. The current study provides new insights into the complex process of vocabulary selection for children who use key word signing at school and highlights the importance of access to a functional sign vocabulary in facilitating inclusive education practices.
摘要:关键词手语是一种非辅助的辅助和替代交流(AAC)系统,在主流小学就读的唐氏综合症儿童中普遍使用。为了确保在主流环境中成功使用关键字手语,必须为所有交流伙伴提供有意义的、上下文合适的手语词汇。本研究旨在开发一套核心的校本关键字手语词汇,以促进唐氏综合症儿童在主流小学一年级与其沟通伙伴之间的有效沟通。四个关键群体——唐氏综合症患者、他们的同龄人、老师和特殊需要助理——以及一名语言病理学家,通过观察、半结构化访谈和学校环境的导游,在一学年的课程中贡献了词汇。根据频率和通用性的标准,140个单词被认为是核心词汇。本研究为在学校使用关键字手语的儿童的复杂词汇选择过程提供了新的见解,并强调了获得功能性手语词汇在促进全纳教育实践中的重要性。
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引用次数: 3
Code-switching using aided AAC: toward an integrated theoretical framework 使用辅助AAC的码交换:迈向整合的理论框架
IF 2 3区 医学 Q1 AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY Pub Date : 2022-01-02 DOI: 10.1080/07434618.2022.2051603
Marika R. King, G. Soto
Abstract Multilingual individuals who use augmentative and alternative communication (AAC) often shift between language environments and speakers of different languages; thus, code-switching (or alternating between languages or dialects within or across contexts) becomes necessary for effective communication. Recently, AAC product developers have responded to this need by building multilingual AAC systems; however, research in multilingualism and AAC is lacking. In this paper, we discuss theoretical and practical implications for research related to code-switching using aided AAC. We use available literature investigating the sociolinguistic, psycholinguistic, and usage-based aspects of code-switching in spoken or signed modalities as a starting point for considering code-switching using aided AAC. We present examples illustrating the varied expression of codeswitching across aided AAC modalities and discuss directions for future research.
使用辅助和替代交际的多语个体经常在语言环境和不同语言的说话者之间转换;因此,代码转换(或在上下文中或跨上下文中在语言或方言之间交替)对于有效的沟通是必要的。最近,AAC产品开发人员通过构建多语言AAC系统来响应这一需求;然而,对多语使用和多语交际的研究还很缺乏。本文讨论了利用辅助AAC进行码交换研究的理论和实践意义。我们使用现有的文献调查社会语言学、心理语言学和基于使用的方面的语码转换在口语或手语的方式作为考虑使用辅助AAC的语码转换的起点。我们举例说明了在辅助AAC模式下编码转换的不同表达,并讨论了未来的研究方向。
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引用次数: 4
The BCH message banking process™, voice banking, and double-dipping™. BCH消息银行流程™,语音银行和双浸™。
IF 2 3区 医学 Q1 AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY Pub Date : 2021-12-01 Epub Date: 2022-01-08 DOI: 10.1080/07434618.2021.2021554
John Costello, Martine Smith

Significant advances have been made in interventions to maintain communication and personhood for individuals with neurodegenerative conditions. One innovation is Message Banking, a clinical approach first developed at Boston Children's Hospital (BCH). This paper outlines the Message Banking process as implemented at BCH, which includes the option of "Double Dipping," where banked messages are mined to develop personalized synthesized voices. More than a decade of experience has led to the evolution of six core principles underpinning the BCH process, resulting in a structured introduction of the associated concepts and practices with people with amyotrophic lateral sclerosis (ALS) and their families. These principles highlight the importance of assigning ownership and control of the process to individuals with ALS and their families, ensuring that as a tool it is empowering and offers hope. Changes have been driven by feedback from individuals who have participated in the BCH process over many years. The success of the process has recently been extended through partnerships that allow the recorded messages to be used to develop individual personalized synthetic voices to complement banked messages. While the process of banking messages is technically relatively simple, the full value of the process should be underpinned by the values and principles outlined in this tutorial.

在干预方面取得了重大进展,以维持神经退行性疾病患者的沟通和人格。其中一项创新是信息银行,这是一种临床方法,最早由波士顿儿童医院(BCH)开发。本文概述了BCH实现的消息银行流程,其中包括“双浸”选项,即挖掘存储的消息以开发个性化的合成语音。十多年的经验导致了支撑BCH过程的六项核心原则的演变,导致肌萎缩侧索硬化症(ALS)患者及其家人有组织地介绍了相关概念和实践。这些原则强调了将这一过程的所有权和控制权分配给ALS患者及其家人的重要性,确保它作为一种工具赋予权能并带来希望。这些变化是由多年来参与BCH流程的个人的反馈推动的。这一过程的成功最近通过伙伴关系得到了扩展,这些伙伴关系允许使用录制的消息来开发个性化的合成语音,以补充存储的消息。虽然存储消息的过程在技术上相对简单,但该过程的全部价值应该以本教程中概述的价值和原则为基础。
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引用次数: 1
Centering the family in their system: a framework to promote family-centered AAC services. 以家庭为中心:促进以家庭为中心的AAC服务的框架。
IF 2 3区 医学 Q1 AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY Pub Date : 2021-12-01 Epub Date: 2021-12-30 DOI: 10.1080/07434618.2021.1991471
Kelly L Coburn, Sojung Jung, Ciara L Ousley, Dawn J Sowers, Meghan Wendelken, Krista M Wilkinson

Families are the most significant communication partners for an individual with complex communication needs. Even though family-centered approaches are recommended to support augmentative and alternative communication (AAC) services for an individual, it is difficult to establish a successful plan that fits each individual's family. A framework for practitioners is proposed to effectively obtain and understand information about a family's unique dynamics as part of service delivery to positively impact AAC device uptake and long-term use. The goal of using this model is to minimize the disruption to the family while maximizing the integration of the AAC system. This paper proposes and illustrates a framework to enrich AAC services through the integration of several theoretical models of family systems theory, family paradigms, and a procedure called the self-created genogram. This paper begins by reviewing ecological family systems theory and family systems to guide and provide a framework to support effective AAC implementation. The process of self-creating genograms is then introduced as a means to obtain a rich perspective on family characteristics and dynamics that is informed by the individual who uses AAC. All of this information allows professionals to provide relevant information and tailor options for the family. As a result, the family is able to make informed decisions about AAC intervention in a manner most consistent with how they typically operate. Finally, we apply this framework to a hypothetical case of a child with autism and complex communication needs across three timepoints (preschool, late elementary/early middle school, and high school/post-secondary transition) to demonstrate how this framework can be used in clinical practice.

对于有复杂沟通需求的人来说,家庭是最重要的沟通伙伴。尽管以家庭为中心的方法被推荐用于支持个人的辅助和替代沟通(AAC)服务,但很难建立一个适合每个家庭的成功计划。为从业者提出了一个框架,以有效地获取和理解关于家庭独特动态的信息,作为服务交付的一部分,以积极影响AAC设备的吸收和长期使用。使用该模型的目的是尽量减少对家庭的干扰,同时最大限度地提高AAC系统的集成。本文提出并举例说明了一个框架,通过整合家庭系统理论、家庭范式和自创建谱系图等理论模型来丰富家庭服务。本文首先回顾了生态家庭系统理论和家庭系统,以指导和提供一个框架来支持有效的AAC实施。然后介绍了自我创建谱系图的过程,作为一种手段,获得关于使用AAC的个人所告知的家庭特征和动态的丰富视角。所有这些信息使专业人员能够提供相关信息并为家庭量身定制选择。因此,家庭能够以最符合他们通常操作方式的方式做出关于AAC干预的明智决定。最后,我们将该框架应用于一个假设的自闭症儿童的案例,该儿童有三个时间点(学龄前,小学晚期/初中早期,高中/中学后过渡)的复杂沟通需求,以展示该框架如何在临床实践中使用。
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引用次数: 9
Development of a Manually Operated Communication System (MOCS) for patients in intensive care units. 重症监护病房患者人工操作通信系统(MOCS)的开发。
IF 2 3区 医学 Q1 AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY Pub Date : 2021-12-01 Epub Date: 2022-01-13 DOI: 10.1080/07434618.2021.2016958
Miriam A Goldberg, Leigh R Hochberg, Dawn Carpenter, J Matthias Walz

Nonvocal alert patients in the intensive care unit (ICU) setting often struggle to communicate due to inaccessible or unavailable tools for augmentative and alternative communication. Innovation of a hand-operated non-touchscreen communication system for nonvocal ICU patients was guided by design concepts including speech output, simplicity, and flexibility. A novel communication tool, the Manually Operated Communication System (MOCS), was developed for use in intensive care settings with patients unable to speak. MOCS is a speech-output technology designed for patients with manual dexterity impairments preventing legible writing. MOCS may have the potential to improve communication for nonvocal patients with limited manual dexterity.

在重症监护病房(ICU)设置的无声警报患者往往难以沟通,由于无法访问或不可用的辅助和替代沟通工具。以语音输出、简单、灵活等设计理念为指导,创新了一种用于非语音ICU患者的手动非触摸屏通信系统。一种新型的通信工具,即手动操作通信系统(MOCS),被开发出来用于重症监护环境中无法说话的患者。MOCS是一种语音输出技术,专为手灵巧障碍患者设计,无法清晰书写。MOCS可能有潜力改善手灵巧程度有限的非言语患者的沟通。
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引用次数: 1
Prompting for repair as a language teaching strategy for augmentative and alternative communication. 提示修复作为一种辅助交际和替代交际的语言教学策略。
IF 2 3区 医学 Q1 AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY Pub Date : 2021-12-01 Epub Date: 2021-12-30 DOI: 10.1080/07434618.2021.1979648
Brittney Cooper, Gloria Soto, Michael T Clarke

Conversational repair has been found to play a fundamental role in the acquisition of language. This paper describes existing research on conversational repair and its relationship to language learning, whether a first language or a second language, as well as its relevance to augmentative and alternative communication (AAC). A case is made for incorporating prompts to repair in conversation-based language interventions with children learning to use AAC. We argue that interventions targeting linguistic complexity should encourage self-repair in conversation in order to develop linguistic and operational competency as well as increase automaticity when using AAC. Clinical implications and directions for future research are discussed.

会话修复在语言习得中起着至关重要的作用。本文介绍了现有的关于会话修复及其与语言学习的关系的研究,无论是第一语言还是第二语言,以及它与增强和替代交际(AAC)的相关性。在儿童学习使用AAC的过程中,在基于会话的语言干预中加入提示修复。我们认为,针对语言复杂性的干预措施应该鼓励对话中的自我修复,以发展语言和操作能力,并提高使用AAC时的自动化程度。讨论了临床意义和今后的研究方向。
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引用次数: 3
Vocabulary in dialogic reading: implications for AAC. 对话阅读中的词汇:对对话阅读的启示。
IF 2 3区 医学 Q1 AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY Pub Date : 2021-12-01 Epub Date: 2021-12-29 DOI: 10.1080/07434618.2021.2016961
Eric J Sanders, Allison Blakeley

Shared reading is an important context for the development of communication, language, and literacy skills in young children. Research conducted with children who require augmentative and alternative communication has indicated that dialogic reading techniques utilized in shared reading can aid in the development of communication skills. One area that has not been investigated is which words children should have access to when engaging in these types of activities. This study reports the results of an investigation focused on the words 5-year-old children without disabilities said during a dialogic reading procedure that occurred with two books, Corduroy and Whistle for Willie. When reading Corduroy and Whistle for Willie, 59 common words said when reading each book accounted for 62.45% and 64.83% of the total words said, respectively. Many of these words were similar to those identified in studies of core vocabulary across a variety of contexts. For Corduroy and Whistle for Willie, 13 and 11 of these 59 words were directly related to the book, respectively. This accounted for approximately 10% of the most commonly used words for each book. The implications of this finding are discussed relative to vocabulary selection for children with complex communication needs during shared reading experiences.

共享阅读是幼儿交流、语言和读写技能发展的重要环境。对需要辅助和替代交流的儿童进行的研究表明,在共享阅读中使用对话阅读技巧有助于交流技能的发展。一个尚未被调查的领域是,当孩子们参与这些类型的活动时,他们应该接触到哪些单词。本研究报告了一项调查的结果,该调查的重点是五岁的无残疾儿童在对话阅读过程中所说的话,这两本书分别是《灯芯绒》和《威利的口哨》。在阅读《灯芯绒》和《威利的哨子》时,每本书中共出现59个常用词,分别占总字数的62.45%和64.83%。这些词汇中有许多与在各种上下文的核心词汇研究中发现的相似。在59个单词中,“灯芯绒”(Corduroy)和“威利”(Willie)分别有13个和11个与这本书直接相关。这大约占每本书中最常用词汇的10%。本文讨论了这一发现对具有复杂交流需求的儿童在共同阅读过程中的词汇选择的影响。
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引用次数: 1
A parent-implemented embedded AAC intervention for teaching navigational requests and other communicative functions to children with Autism spectrum disorder. 一种家长实施的嵌入式AAC干预,用于自闭症谱系障碍儿童导航请求和其他交际功能的教学。
IF 2 3区 医学 Q1 AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY Pub Date : 2021-09-01 Epub Date: 2021-10-20 DOI: 10.1080/07434618.2021.1946846
Cindy Gevarter, Mariah Groll, Erin Stone, Adriana Medina Najar

This study evaluated the effectiveness of an embedded naturalistic intervention for teaching augmentative and alternative communication (AAC) application responses to three preschool-aged males with autism spectrum disorder (ASD). Parents were taught to embed opportunities for their child to communicate with a grid-based AAC application during every-day routines such as play or mealtime. Communication targets included requesting objects using two-step taxonomic navigational responses, and requesting assistance, rejecting items, or making social comments/responses using a two-step message-strip response. During intervention, parents used strategies such as time delay, prompting, reinforcement, and device proximity (faded over time) to encourage target responses. Display formats and intervention targets were selected in consideration of prior dynamic assessment results. Effects of intervention were evaluated using a multiple probe across participants design. For functional navigational AAC item requesting, all three participants showed an immediate increase in responding that maintained at high levels. Functional AAC responding for other communicative purposes also increased, but at a more gradual pace. All three participants showed generalized responding when new items were added to displays, and when display pages with a larger array of folders and vocabulary items were introduced. Generalization to labeling tasks was mixed.

本研究评估了嵌入式自然主义干预对三名患有自闭症谱系障碍(ASD)的学龄前男性进行辅助和替代交流(AAC)应用反应教学的有效性。父母们被教导在日常生活中,比如玩耍或吃饭时间,为孩子嵌入与基于网格的AAC应用程序交流的机会。通信目标包括使用两步分类导航响应请求对象,以及使用两步消息条响应请求帮助、拒绝项目或进行社会评论/响应。在干预期间,家长使用诸如时间延迟、提示、强化和设备接近(随着时间的推移逐渐消失)等策略来鼓励目标反应。根据前期动态评估结果选择展示格式和干预目标。干预效果评估采用多探针跨参与者设计。对于功能性导航AAC项目请求,所有三名参与者的反应都立即增加,并保持在较高水平。用于其他交流目的的功能性AAC反应也有所增加,但速度更为缓慢。当新项目被添加到显示中,以及当显示页面中有更多的文件夹和词汇项被引入时,所有三名参与者都表现出一般化的反应。对标记任务的概括是混合的。
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引用次数: 6
The effect of cue type on directive-following in children with moderate to severe autism spectrum disorder. 线索类型对中重度自闭症谱系障碍儿童指令服从的影响。
IF 2 3区 医学 Q1 AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY Pub Date : 2021-09-01 Epub Date: 2021-07-09 DOI: 10.1080/07434618.2021.1930154
Anna A Allen, Howard C Shane, Ralf W Schlosser, Charles W Haynes

For this study, 11 children with moderate to severe autism spectrum disorder (ASD) were given directives containing prepositions in three cue conditions: (a) spoken alone, (b) a short video clip along with spoken cues, and (c) a sequence of three graphic symbols accompanied by spoken cues. Participants followed directives significantly more accurately with the video clip than with spoken cues only, and significantly more accurately with spoken cues only relative to the sequence of graphic symbols. Results suggest that the short video clip along with spoken cues may be an optimal mode for enhancing learners' ability to follow directives containing prepositions. In addition, results reveal three statistically significant correlations between participants' preexisting skills and directive-following accuracy: a positive correlation between spoken preposition preassessment total score and accuracy in the spoken-alone condition; a positive correlation between spoken noun preassessment total score and accuracy in the video-clip condition; and a positive correlation between ASD severity and the need for repetition in the video-clip condition. Results also suggested that, for children with more severe ASD symptoms, the video clips require repetitions so that the relationships illustrated within it can gain more semantic salience. Implications for clinical practice and future research are discussed.

在这项研究中,11名患有中度至重度自闭症谱系障碍(ASD)的儿童在三种提示条件下被给予包含介词的指令:(a)单独说话,(b)一个简短的视频片段伴随着口语提示,(c)三个图形符号序列伴随着口语提示。参与者在观看视频片段时比只听口头提示时更准确地遵循指令,而在只听口头提示时,相对于图形符号的顺序,他们的准确性要高得多。结果表明,短视频片段和口头提示可能是提高学习者遵循包含介词的指示能力的最佳模式。此外,研究结果还发现,被试的前存技能与指令跟随准确性之间存在三个显著的相关关系:在单独口语条件下,口语介词预估总分与准确性之间存在正相关;视频片段条件下名词口语预评总分与正确率呈正相关;ASD的严重程度与视频剪辑条件下的重复需求呈正相关。结果还表明,对于ASD症状更严重的儿童,视频片段需要重复,以便其中说明的关系可以获得更多的语义显著性。对临床实践和未来研究的意义进行了讨论。
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引用次数: 1
期刊
Augmentative and Alternative Communication
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