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Identifying pain and distress in non-verbal persons with intellectual disability: Professional caregivers’ and parents’ attitudes towards using wearable sensors 识别非语言智障患者的疼痛和痛苦:专业护理人员和父母对使用可穿戴传感器的态度
IF 0.5 Q3 Medicine Pub Date : 2023-08-21 DOI: 10.3233/tad-220390
Tone Øderud, E. Boysen, F. Strisland, Inger-Lise Dahl, Emilie Kildal, B. Hassel, C. Morland
BACKGROUND: Persons with severe intellectual disability (ID) may be non-verbal and unable to communicate pain or distress. Consequently, painful conditions may go undetected, and non-verbal persons with ID may not receive adequate care and treatment. OBJECTIVE: This study aims to explore how professional caregivers and parents identify pain and distress in non-verbal persons with ID, and their attitudes towards using wearable sensors to identify pain and distress in daily life situations. METHODS: Exploratory, mixed method study. Caregivers (83) answered an online questionnaire, and professional caregivers (18) and parents (7) were interviewed. RESULTS: Professional caregivers and parents recognise pain and distress from observations and behavioural signs that are often equivocal. They experience that this is inadequate to reliably detect pain and distress in non-verbal persons with ID. Professional caregivers and parents’ express frustration and fear that painful conditions may remain untreated. They are positive towards using wearable sensors on condition that sensors do not infringe on user autonomy and privacy. CONCLUSIONS: There is a need for sensors and methods that can objectively identify pain and distress and ensure adequate treatment, that may improve quality of life of non-verbal persons with ID.
背景:患有严重智力残疾(ID)的人可能不会说话,无法交流疼痛或痛苦。因此,疼痛的情况可能无法被发现,患有ID的非语言患者可能得不到足够的护理和治疗。目的:本研究旨在探讨专业护理人员和父母如何识别ID非语言患者的疼痛和痛苦,以及他们在日常生活中使用可穿戴传感器识别疼痛和痛苦的态度。方法:探索性、混合方法研究。护理人员(83人)回答了一份在线问卷,并采访了专业护理人员(18人)和家长(7人)。结果:专业护理人员和父母从观察和行为迹象中识别出疼痛和痛苦,这些观察和行为信号往往是模棱两可的。他们认为,这不足以可靠地检测患有ID的非语言患者的疼痛和痛苦。专业护理人员和父母对疼痛状况可能无法得到治疗表示沮丧和恐惧。他们对使用可穿戴传感器持积极态度,条件是传感器不会侵犯用户的自主性和隐私。结论:需要能够客观识别疼痛和痛苦并确保充分治疗的传感器和方法,以提高ID非语言患者的生活质量。
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引用次数: 0
Reliability of oral language and emergent literacy tele-assessments in autistic children: A preliminary study/report 自闭症儿童口语和紧急识字能力远程评估的可靠性:一项初步研究/报告
IF 0.5 Q3 Medicine Pub Date : 2023-08-03 DOI: 10.3233/tad-230006
Haritha S. Mohan, S. Tiwari, V. Guddattu
BACKGROUND: The growing need and popularity of telepractice over conventional direct therapy by speech-language pathologists (SLPs) demand validation of assessment of oral language and literacy domains via telepractice mode. Considering the limited research on the validation of standardised oral language and literacy tele-assessment in autistic children, it is vital to explore the feasibility of standardised oral language assessments in specific cultural and linguistic contexts. OBJECTIVE: To examine the reliability of standardised oral language and emergent literacy assessments delivered via telepractice in autistic children. METHODS: Emergent literacy and oral language skills of ten autistic children aged between 4 to 8 years were assessed using the Test of Emergent Literacy Assessment (TELA), and Assessment of Language Development (ALD) through in-person and tele-assessment with a gap of 15 days. RESULTS: The findings of the present study establish the reliability of standardised oral language and literacy tele-assessment in autistic children by demonstrating a high level of agreement between in-person and tele-assessment modes. CONCLUSIONS: Telepractice, may therefore, be a feasible and reliable mode of oral language and literacy assessment in autistic children, with adequate knowledge of the required special accommodation(s), required training and strong collaboration with the facilitator(s).
背景:与传统的语言病理学家(slp)直接治疗相比,远程实践的需求和普及要求通过远程实践模式验证口头语言和读写领域的评估。考虑到标准化口语和读写能力远程评估在自闭症儿童中的有效性研究有限,探索标准化口语评估在特定文化和语言环境中的可行性至关重要。目的:检验远程训练中孤独症儿童标准化口语和应急读写能力评估的可靠性。方法:对10例4 ~ 8岁自闭症儿童进行紧急读写能力和口语能力评估,采用紧急读写能力测试(TELA)和语言发展评估(ALD),每隔15天进行面对面和远程评估。结果:本研究的结果通过证明面对面和远程评估模式之间的高度一致性,建立了标准化自闭症儿童口语和读写能力远程评估的可靠性。结论:因此,远程练习可能是一种可行和可靠的自闭症儿童口语和读写能力评估模式,需要充分了解所需的特殊住宿、所需的培训和与调解人的密切合作。
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引用次数: 0
Designing and manufacturing custom-made 3D printed assistive devices: A comparison of three workflows 设计和制造定制的3D打印辅助设备:三个工作流程的比较
IF 0.5 Q3 Medicine Pub Date : 2023-07-12 DOI: 10.3233/tad-221511
K. Slegers, Tessa Delien, V. Bettelli, M. Lexis, Tom Saey, D. Banes, Ramon Daniëls
BACKGROUND: Do-it-yourself technologies such as 3D printing offer interesting opportunities for creating custom-made assistive devices for people with disabilities. Although these opportunities are increasingly acknowledged, it remains unclear how 3D printing technology should be implemented in assistive devices delivery processes. OBJECTIVE: In three separate action research projects carried out in Belgium, Italy and The Netherlands, workflows were designed and evaluated that incorporate 3D printing as a standard option for providing clients with suitable assistive devices. METHODS: In this paper we describe and compare the three workflows that were conceived simultaneously, yet independently from each other. RESULTS: Based on the evaluations of these workflows, and the experiences of the researchers who developed the workflows, we provide recommendations for implementing 3D printing as a common approach in assistive device delivery processes in practice. Most importantly, designing and manufacturing should be done by means of a client-centered co-creation process by interdisciplinary teams of clinicians, clients, and 3D printing experts. We provide several recommendations for facilitating and supporting collaborations within such teams. CONCLUSIONS: The three workflows presented in this paper are strikingly similar and therefore provide a convincing starting point for interdisciplinary design teams who wish to embark on 3D printing custom-made assistive devices.
背景:3D打印等自助技术为残疾人定制辅助设备提供了有趣的机会。尽管这些机会越来越得到认可,但3D打印技术应如何在辅助设备交付过程中实施仍不清楚。目的:在比利时、意大利和荷兰开展的三个单独的行动研究项目中,设计和评估了工作流程,将3D打印作为为客户提供合适辅助设备的标准选项。方法:在本文中,我们描述并比较了三种同时构思但相互独立的工作流程。结果:基于对这些工作流程的评估,以及开发工作流程的研究人员的经验,我们为在实践中将3D打印作为辅助设备交付过程中的一种常见方法提供了建议。最重要的是,设计和制造应该通过临床医生、客户和3D打印专家的跨学科团队以客户为中心的共同创建过程来完成。我们为促进和支持此类团队内部的合作提供了一些建议。结论:本文中提出的三个工作流程惊人地相似,因此为希望从事3D打印定制辅助设备的跨学科设计团队提供了一个令人信服的起点。
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引用次数: 0
Assistive technology for people with visual disability: Future prospects through a technology foresight exercise 为视障人士提供的辅助技术:通过技术展望活动展望未来
IF 0.5 Q3 Medicine Pub Date : 2023-07-11 DOI: 10.3233/tad-230010
Bernardo Cabral, Inara Amorim, Daniel Silva, Islaine Santana, Fernanda Carvalho, Vinícius Cordeiro
BACKGROUND: In recent years, with ever-improving technology, considerable progress has been made in the approaches available to develop mobility assistive technology systems. OBJECTIVE: This paper aims to anticipate the future of assistive technologies of navigation and mobility for people with severe visual disabilities in the next twenty years (2021–2041). METHODS: We conducted a technology foresight exercise by identifying promising technologies and invited over 20,000 researchers worldwide to share their views on the future of assistive technologies for people with visual impairment. The technologies and respondents were identified from specialized journals indexed on Web of Science. RESULTS: Most respondents believe computer vision will be the most important assistive technology group for mobility and navigation for visually impaired people, especially with haptic feedback. They also believe that voice and vibrotactile are the most relevant feedback and that glasses and smartphones will be the most important tools for visual impairment support. CONCLUSIONS: While costs and lack of user training may hamper the development and use of these new technologies, they represent the future of assistive technology for people with visual impairments.
背景:近年来,随着技术的不断进步,可用于开发移动辅助技术系统的方法已经取得了相当大的进展。目的:本文旨在预测未来二十年(2021-2041年)严重视觉残疾患者导航和移动辅助技术的未来。方法:我们通过确定有前景的技术进行了技术展望,并邀请了全球20000多名研究人员分享他们对视觉障碍辅助技术未来的看法。这些技术和受访者是从科学网站上的专业期刊中确定的。结果:大多数受访者认为,计算机视觉将是视障人士移动和导航最重要的辅助技术,尤其是触觉反馈。他们还认为,语音和振动触觉是最相关的反馈,眼镜和智能手机将是支持视力障碍的最重要工具。结论:虽然成本和缺乏用户培训可能会阻碍这些新技术的开发和使用,但它们代表了视觉障碍患者辅助技术的未来。
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引用次数: 0
Assessing the accessibility of healthcare websites for disabled users: A case study of COVID-19 pandemic websites 评估残疾用户医疗保健网站的可访问性:新冠肺炎大流行网站的案例研究
IF 0.5 Q3 Medicine Pub Date : 2023-05-18 DOI: 10.3233/tad-221509
Diksha Dani, Gaurav Agrawal
BACKGROUND: The recent COVID-19 pandemic like situation has killed a large numbers of people and caused havoc across the world. With the aim of providing the COVID-19 related updated information about facilities, availability, utilization of COVID-19 related resources like vaccines, hospitals, beds, oxygen to the people and preventing its surge, many websites were developed for health guidance to the general masses. OBJECTIVE: The objective of this paper is to investigate the accessibility and usability of websites providing COVID-19 information in India. METHODS: This study evaluates the 38 websites providing COVID-19 information in India using automated tools. RESULTS: It was found that digital healthcare information is far from accessibility conformance and none of the websites conformed to web content accessibility guidelines (WCAG) 2.0 completely. The website adhered to understandability with average errors of 2.8 while less compliant to perceivability with average errors of 30.5. It was also found that most of the websites were mobile friendly.
背景:最近发生的类似COVID-19大流行的疫情已造成大量人员死亡,并在全球范围内造成严重破坏。为了向人民群众提供与新冠肺炎相关的设施、疫苗、医院、床位、氧气等相关资源的可用性、利用情况等最新信息,防止疫情激增,我们开发了许多网站,为广大群众提供健康指导。目的:本文的目的是调查印度提供COVID-19信息的网站的可访问性和可用性。方法:本研究使用自动化工具对印度38个提供COVID-19信息的网站进行评估。结果:发现数字医疗信息的可访问性远未达到可访问性一致性,没有一个网站完全符合web内容可访问性指南(WCAG) 2.0。网站遵循可理解性,平均错误为2.8,而不遵循可感知性,平均错误为30.5。我们还发现,大多数网站都是移动友好的。
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引用次数: 0
Self-management interventions for people with physical disabilities who have chronic conditions: A scoping review 慢性身体残疾患者的自我管理干预:范围审查
IF 0.5 Q3 Medicine Pub Date : 2023-05-17 DOI: 10.3233/tad-220388
Ayse G Zengul, Eric Evans, A. Cherrington, T. Mehta, Mohanraj Thirumalai
Self-management interventions help improve health behaviors and outcomes. People with physical disabilities are more prone to various chronic conditions. A better understanding of the disability-focused self-management interventions is needed. This study aims to review the impact of self-management interventions on adult individuals with physical disabilities and chronic conditions. A scoping review of the literature was conducted on August 19th, 2021, through a search in the PubMed, MEDLINE, and EMBASE databases to synthesize results from original studies regarding the impact of self-management interventions on adult individuals with physical disabilities and chronic conditions. The review was undertaken in accordance with the Preferred Reporting Items for Systematic Reviews and Synthesis without meta-analysis (Swim) guideline. Seventy-nine records were extracted from 3069 individual articles retrieved from the search strategy. We summarized the evidence on the content and behavior change skills, technology use, disease adjustment skills, and frequently used outcomes, including various physical, behavioral, and emotional symptoms. The results demonstrate promising evidence that self-management interventions are effective at improving health outcomes in people with physical disabilities and chronic conditions. By addressing the research gaps, the findings specify the essential contours for future research and disability-inclusive self-management programs.
自我管理干预措施有助于改善健康行为和结果。身体残疾的人更容易患上各种慢性疾病。需要更好地了解以残疾为重点的自我管理干预措施。本研究旨在回顾自我管理干预对成人身体残疾和慢性疾病的影响。通过检索PubMed、MEDLINE和EMBASE数据库,于2021年8月19日对文献进行了范围审查,以综合有关自我管理干预对患有身体残疾和慢性疾病的成年个体影响的原始研究结果。本综述按照系统评价和综合无荟萃分析(Swim)指南的首选报告项目进行。从从搜索策略检索到的3069篇单独的文章中提取了79条记录。我们总结了有关内容和行为改变技能、技术使用、疾病调整技能和常用结果(包括各种身体、行为和情绪症状)的证据。结果表明,自我管理干预措施在改善身体残疾和慢性病患者的健康结果方面是有效的。通过解决研究差距,研究结果为未来的研究和残疾人包容性自我管理项目指明了基本轮廓。
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引用次数: 0
Effects of virtual reality training in the postural control of children with Down syndrome: A case series 虚拟现实训练对唐氏综合症儿童姿势控制的影响:一个案例系列
IF 0.5 Q3 Medicine Pub Date : 2023-04-10 DOI: 10.3233/tad-220370
Andrea Leiton-Muñoz, R. Cartes-Velásquez, Valeska Gatica-Rojas
BACKGROUND: Children with Down syndrome (DS) may struggle adjusting their posture during gait or standing and tend to adapt slower to demanding motor tasks and environmental changes. The functionality in their daily activities is frequently diminished or they are slower, with poor postural control and balance as possible reasons. There is limited research on exercise programmes to improve postural control in children with DS. OBJECTIVE: To determine the effectivenes of an exercise programm with the Nintendo Wii Balance Board (NWBB) interface o postural control and functional balance of children with DS. METHODS: Participants were five children age 6–9 years belonging to the legal organization Espacio Down (in Talca, Chile), who underwen an exercise programm with the NWBB. The duration of the intervention wa 9 weeks, with two 25-minute sessions per week and a total intervention timeof 7.5 hours for each subject. Postural control pre-/postintervention was evaluated at a functional level with clinical tests: Timed Up and Go (TUG), One-Leg Standing (TOLS) and posturographic measures using centre of pressure (CoP) variables Descriptive statistics and the Wilcoxon test were applied, with p< 0.05 considered to be significant. RESULTS: Th NWBB programme showed a significant decrease in the CoP total velocity, mean velocity and displacements in themediolateral and anteroposterior directions (p= 0.021) for the closed-eyes condition and a decrease in the time of the TUG test (p= 0.021). CONCLUSIONS: This pilot study provides initial evidence for the effectiveness of the NWBB programme in children with DS. A 9-week NWBB programme improves the postural control and functional balanceof children with DS.
背景:患有唐氏综合症(DS)的儿童在步态或站立时可能难以调整姿势,并且倾向于较慢地适应高要求的运动任务和环境变化。他们的日常活动功能经常减少或行动迟缓,姿势控制和平衡能力差是可能的原因。关于改善退行性椎体滑移患儿姿势控制的运动方案的研究有限。目的:确定任天堂Wii平衡板(NWBB)接口运动方案对DS儿童姿势控制和功能平衡的效果。方法:参与者是5名6-9岁的儿童,他们属于Espacio Down(位于智利Talca)法律组织,他们参加了NWBB的锻炼项目。干预持续时间为9周,每周进行两次25分钟的干预,每位受试者的总干预时间为7.5小时。通过临床测试在功能水平上评估干预前/后的姿势控制:使用压力中心(CoP)变量进行计时起走(TUG)、单腿站立(TOLS)和姿势测量,采用描述性统计和Wilcoxon检验,p< 0.05认为具有显著性。结果:在闭眼条件下,NWBB方案显著降低了CoP总速度、平均速度和中外侧和前后方向的位移(p= 0.021),减少了TUG测试的时间(p= 0.021)。结论:该试点研究为NWBB项目在退行性痴呆儿童中的有效性提供了初步证据。为期9周的NWBB计划可改善退行性痴呆儿童的姿势控制和功能平衡。
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引用次数: 0
A technology-aided program to support positive occupation in people with advanced Alzheimer’s disease: A pilot study 一项支持晚期阿尔茨海默病患者积极职业的技术辅助计划:一项试点研究
IF 0.5 Q3 Medicine Pub Date : 2023-03-24 DOI: 10.3233/tad-221507
Fiora D’amico, G. Lancioni, Flavio De Marinis, Fabiana Abbinante, P. Taurisano, Chiara Abbatantuono, L. Desideri
BACKGROUND: People with advanced Alzheimer’s disease tend to be sedentary and passive unless staff intervene to support their occupation. OBJECTIVE: This pilot study assessed the impact of a technology-aided program set up to help participants at the low end of the moderate or at the severe level of the disease access preferred stimulation and carry out simple/basic activities involving the use of everyday objects. METHODS: The program (a) relied on the use of a tablet, a voice-recording device, and a mini speaker and (b) provided the participants with verbal and visual instructions to guide them in carrying out the activity steps and accessing preferred stimulation. The program was implemented with five participants according to a nonconcurrent multiple baseline across participants design. RESULTS: During the baseline phase (i.e., prior to the use of the program), the participants carried out less than 15% of the activity steps and relied on the research assistants to access preferred stimulation (songs). During the intervention phase (i.e., with the program), the participants’ percentage of activity steps carried out increased to between about 58 and 92. Moreover, all participants were largely successful in accessing preferred stimulation. CONCLUSIONS: These results suggest that the technology-aided program used in this study might help increase the level of positive occupation of people with advanced Alzheimer’s disease.
背景:晚期阿尔茨海默病患者倾向于久坐和被动,除非工作人员干预以支持他们的职业。目的:本试点研究评估了一项技术辅助计划的影响,该计划旨在帮助中度或重度疾病的低端参与者获得首选刺激,并进行涉及使用日常物品的简单/基本活动。方法:该程序(a)依赖于平板电脑、录音设备和迷你扬声器的使用,(b)为参与者提供口头和视觉指导,指导他们执行活动步骤并获得首选刺激。根据非并发多基线跨参与者设计,该计划由五名参与者实施。结果:在基线阶段(即,在使用程序之前),参与者执行了不到15%的活动步骤,并依靠研究助理获得首选刺激(歌曲)。在干预阶段(即,在项目中),参与者的活动步数百分比增加到大约58%到92%之间。此外,所有参与者基本上都成功地获得了首选刺激。结论:这些结果表明,本研究中使用的技术辅助程序可能有助于提高晚期阿尔茨海默病患者的积极职业水平。
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引用次数: 0
Willingness of people with severe visual impairments to accept new transportation assistive technologies 严重视障人士接受新的交通辅助技术的意愿
IF 0.5 Q3 Medicine Pub Date : 2023-03-24 DOI: 10.3233/tad-221502
R. Bennett, Rohini Vijaygopal
BACKGROUND: Technology-driven assistive devices provide numerous benefits to people with severe visual impairments, yet device take-up rates are often low. OBJECTIVE: The study sought to determine the strengths of connections between transportation self-efficacy, technophobia, personal inertia, innovation resistance, and willingness to adopt high-tech transportation assistive devices among visually impaired individuals. It also examined certain potential barriers to device acceptance; namely the perceived safety and complexity of assistive devices and the effects on a person’s self-image of using a device. METHODS: A model was developed and tested via a questionnaire survey of 319 people with visual disabilities, each of whom was presented with five examples of hypothetical high-tech mobility and transportation assistive devices. RESULTS: Technophobia exerted a powerful negative impact on innovation resistance and was itself significantly determined in part by transportation self-efficacy. Personal inertia and the effects of device use on self-image failed to impact significantly on the participants’ levels of innovation resistance. CONCLUSIONS: The results have implications for the promotional activities of manufacturers of mobility and transportation assistive devices and for visual disability support organisations that wish to secure acceptance of new assistive devices.
背景:技术驱动的辅助设备为严重视力障碍患者提供了许多好处,但设备使用率往往很低。目的:研究视障人士的交通自我效能感、技术恐惧症、个人惯性、创新阻力和采用高科技交通辅助装置意愿之间的联系强度。它还审查了设备接受的某些潜在障碍;即辅助器具的感知安全性和复杂性,以及使用辅助器具对个人自我形象的影响。方法:通过对319名视障人士进行问卷调查,建立模型并对其进行测试,每个人都有5个假想的高科技移动和交通辅助装置的例子。结果:技术恐惧对创新阻力有显著的负向影响,其本身在一定程度上受交通自我效能感的影响。个人惯性和设备使用对自我形象的影响对参与者的创新抗拒水平没有显著影响。结论:研究结果对移动和交通辅助设备制造商的促销活动以及希望确保接受新辅助设备的视觉障碍支持组织具有启示意义。
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引用次数: 0
Science and inclusion 科学与包容
Q3 Medicine Pub Date : 2023-03-09 DOI: 10.3233/tad-220387
Enrique Canessa, Carlo Fonda
BACKGROUND: “Science Dissemination for Scholars with Disabilities” is a noteworthy topic which is still sparse and needs more attention by the scientific community. OBJECTIVE: In order to increase interest in the study of science and on access to research without exclusion emphasis needs to be paid towards innovation within a scientific environment. Our hope is to encourage further consideration by the scientific community and present strategies that promote the full inclusion of scholars with disabilities in society. METHODS: This work is the result of research experiences in the field of Science and Inclusion within the activities carried out at the ICTP Scientific Fabrication Laboratory of Trieste, in Italy, over the last eight years. Description of some issues on the use of open source digital technologies available at Scientific FabLabs to support education and scientific know-how for all are assessed, and a collection of interesting novel approaches developed in our SciFabLab are given as examples. The discussion is presented to motivate further research and give technological priorities. RESULTS: We discuss and show concrete examples on how to make “almost anything” through Scientific FabLabs to disseminate science and remove practical barriers offering people with disabilities more independence and opportunities to study science. Standard theories of Disability in the STEM context are also discussed. CONCLUSIONS: This contribution is relevant from the point of view of the social model in that supportive digital tools developed at Scientific FabLabs can be manufactured with participation, assistance and presence by people with a disability. Through this class of Fablabs, we aim to sustain new generations of scientists without any exclusion.
背景:“残障学者的科学传播”是一个值得关注的话题,但仍是一个稀缺的话题,需要科学界更多的关注。目的:为了提高人们对科学研究的兴趣,不排斥地获得研究成果,需要强调科学环境中的创新。我们的希望是鼓励科学界进一步考虑,并提出促进残疾学者充分融入社会的战略。方法:这项工作是过去八年来在意大利的里雅斯特的ICTP科学制造实验室开展的活动中科学和包容领域的研究经验的结果。本文评估了在科学fablab中使用开源数字技术来支持所有人的教育和科学知识的一些问题,并举例说明了在我们的科学fablab中开发的一系列有趣的新方法。提出的讨论是为了激励进一步的研究和确定技术优先级。结果:我们讨论并展示了如何通过科学FabLabs制作“几乎任何东西”来传播科学,消除实际障碍,为残疾人提供更多的独立性和学习科学的机会。还讨论了STEM背景下的标准残疾理论。结论:从社会模型的角度来看,这一贡献是相关的,因为科学FabLabs开发的支持性数字工具可以在残疾人的参与、帮助和在场的情况下制造。通过这类实验室,我们的目标是支持新一代的科学家,没有任何排斥。
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引用次数: 0
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