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"We have been magnified for years - Now you are under the microscope!": Co-researchers with Learning Disabilities Created an Online Survey to Challenge Public Understanding of Learning Disabilities. “多年来我们一直被放大——现在你在显微镜下!”:有学习障碍的共同研究人员创建了一项在线调查,以挑战公众对学习障碍的理解。
Pub Date : 2020-04-21 eCollection Date: 2020-04-01 DOI: 10.1145/3313831.3376278
Dorota Chapko, Pino Frumiento, Nalini Edwards, Lizzie Emeh, Donald Kennedy, David McNicholas, Michaela Overton, Mark Snead, Robyn Steward, Jenny M Sutton, Evie Jeffreys, Catherine Long, Jess Croll-Knight, Ben Connors, Sam Castell-Ward, David Coke, Bethany McPeake, William Renel, Chris McGinley, Anna Remington, Dora Whittuck, John Kieffer, Sarah Ewans, Mark Williams, Mick Grierson

Public attitudes towards learning disabilities (LDs) are generally reported as positive, inclusive and empathetic. However, these findings do not reflect the lived experiences of people with LDs. To shed light on this disparity, a team of co-researchers with LDs created the first online survey to challenge public understanding of LDs, asking questions in ways that are important to them and represent how they see themselves. Here, we describe and evaluate the process of creating an accessible survey platform and an online survey in a research team consisting of academic and non-academic professionals with and without LDs or autism. Through this inclusive research process, the co-designed survey met the expectations of the co-researchers and was well-received by the initial survey respondents. We reflect on the co-researchers' perspectives following the study completion, and consider the difficulties and advantages we encountered deploying such approaches and their potential implications on future survey data analysis.

公众对学习障碍的态度通常是积极、包容和共情的。然而,这些发现并不能反映ld患者的生活经历。为了揭示这种差异,一组与ld合作的研究人员创建了第一个在线调查,以挑战公众对ld的理解,以对他们重要的方式提出问题,并代表他们如何看待自己。在这里,我们描述并评估了一个由学术和非学术专业人员组成的研究团队创建一个可访问的调查平台和在线调查的过程,这些专业人员有或没有ld或自闭症。通过这种包容性的研究过程,共同设计的调查达到了共同研究人员的期望,并得到了最初调查受访者的好评。在研究完成后,我们反思了共同研究者的观点,并考虑了我们在使用这些方法时遇到的困难和优势,以及它们对未来调查数据分析的潜在影响。
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引用次数: 0
Approach Matters: Linking Practitioner Approaches to Technology Design for People with Dementia. 方法很重要:将从业人员的方法与痴呆症患者的技术设计联系起来。
Emma Dixon, Amanda Lazar

Technology design for dementia is an active and growing area. Though work to date has largely addressed functional needs, there is a growing recognition of the importance of supporting meaningful activities. However, technology for active, rather than passive, engagement is relatively novel beyond specific applications (e.g., music or reminiscence therapy). To better understand how to support active engagement of people with dementia in activities, we interviewed nineteen practitioners. Our findings reveal differing approaches to making sense of the actions of people with dementia, as well as to engaging them in activities. We discuss the importance of tracing epistemological understandings of dementia to different configurations of technology for people living with dementia and provide a practical guide to support designers to do so. Finally, we discuss considerations for the design of dementia technologies around facilitating self-actualization and managing emotional exposure for care-providers.

痴呆症技术设计是一个活跃且不断发展的领域。虽然迄今为止的工作主要是满足功能性需求,但人们越来越认识到支持有意义活动的重要性。然而,除了特定应用(如音乐或回忆疗法)之外,用于主动而非被动参与的技术还相对比较新颖。为了更好地了解如何支持痴呆症患者积极参与活动,我们采访了 19 位从业人员。我们的调查结果揭示了在理解痴呆症患者的行为以及让他们参与活动方面的不同方法。我们讨论了从对痴呆症的认识论理解出发,为痴呆症患者设计不同配置的技术的重要性,并提供了一份实用指南,以支持设计者开展这项工作。最后,我们围绕促进自我实现和管理护理人员的情绪暴露,讨论了痴呆症技术设计的注意事项。
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引用次数: 0
Checklist Design Reconsidered: Understanding Checklist Compliance and Timing of Interactions. 重新考虑检查表设计:理解检查表遵从性和交互时间。
Leah Kulp, Aleksandra Sarcevic, Yinan Zheng, Megan Cheng, Emily Alberto, Randall Burd

We examine the association between user interactions with a checklist and task performance in a time-critical medical setting. By comparing 98 logs from a digital checklist for trauma resuscitation with activity logs generated by video review, we identified three non-compliant checklist use behaviors: failure to check items for completed tasks, falsely checking items when tasks were not performed, and inaccurately checking items for incomplete tasks. Using video review, we found that user perceptions of task completion were often misaligned with clinical practices that guided activity coding, thereby contributing to non-compliant check-offs. Our analysis of associations between different contexts and the timing of check-offs showed longer delays when (1) checklist users were absent during patient arrival, (2) patients had penetrating injuries, and (3) resuscitations were assigned to the highest acuity. We discuss opportunities for reconsidering checklist designs to reduce non-compliant checklist use.

我们研究了在时间紧迫的医疗环境中与检查表的用户交互和任务性能之间的关联。通过比较98份创伤复苏数字检查表与视频检查生成的活动日志,我们确定了三种不合规的检查表使用行为:未能检查已完成任务的项目,未执行任务时错误检查项目,以及未完成任务时不准确检查项目。使用视频审查,我们发现用户对任务完成的感知常常与指导活动编码的临床实践不一致,从而导致不合规的检查。我们对不同背景和检查时间之间的关联的分析表明,当(1)患者到达时检查表使用者不在,(2)患者有穿透性损伤,(3)复苏被分配到最高的敏锐度时,检查延误时间更长。我们讨论了重新考虑检查表设计以减少不合规检查表使用的机会。
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引用次数: 6
Pedestrian Detection with Wearable Cameras for the Blind: A Two-way Perspective. 利用盲人可穿戴摄像头检测行人:双向视角。
Kyungjun Lee, Daisuke Sato, Saki Asakawa, Hernisa Kacorri, Chieko Asakawa

Blind people have limited access to information about their surroundings, which is important for ensuring one's safety, managing social interactions, and identifying approaching pedestrians. With advances in computer vision, wearable cameras can provide equitable access to such information. However, the always-on nature of these assistive technologies poses privacy concerns for parties that may get recorded. We explore this tension from both perspectives, those of sighted passersby and blind users, taking into account camera visibility, in-person versus remote experience, and extracted visual information. We conduct two studies: an online survey with MTurkers (N=206) and an in-person experience study between pairs of blind (N=10) and sighted (N=40) participants, where blind participants wear a working prototype for pedestrian detection and pass by sighted participants. Our results suggest that both of the perspectives of users and bystanders and the several factors mentioned above need to be carefully considered to mitigate potential social tensions.

盲人获取周围环境信息的途径有限,而这些信息对于确保自身安全、管理社会交往和识别接近的行人非常重要。随着计算机视觉技术的进步,可穿戴摄像头可以为盲人提供获取此类信息的平等机会。然而,这些辅助技术始终在线的特性给可能被记录的各方带来了隐私问题。我们从视力正常的路人和盲人用户两个角度探讨了这一矛盾,同时考虑到了摄像头的可视性、亲身体验与远程体验以及提取的视觉信息。我们进行了两项研究:一项是对 MTurkers(206 人)的在线调查,另一项是对盲人(10 人)和视力正常者(40 人)的亲身体验研究。我们的研究结果表明,用户和旁观者的视角以及上述几个因素都需要仔细考虑,以缓解潜在的社会紧张关系。
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引用次数: 0
"Energy is a Finite Resource": Designing Technology to Support Individuals across Fluctuating Symptoms of Depression. "能量是有限的资源":设计技术,为抑郁症波动症状患者提供支持。
Rachel Kornfield, Renwen Zhang, Jennifer Nicholas, Stephen M Schueller, Scott A Cambo, David C Mohr, Madhu Reddy

While the HCI field increasingly examines how digital tools can support individuals in managing mental health conditions, it remains unclear how these tools can accommodate these conditions' temporal aspects. Based on weekly interviews with five individuals with depression, conducted over six weeks, this study identifies design opportunities and challenges related to extending technology-based support across fluctuating symptoms. Our findings suggest that participants perceive events and contexts in daily life to have marked impact on their symptoms. Results also illustrate that ebbs and flows in symptoms profoundly affect how individuals practice depression self-management. While digital tools often aim to reach individuals while they feel depressed, we suggest they should also engage individuals when they are less symptomatic, leveraging their energy and motivation to build habits, establish plans and goals, and generate and organize content to prepare for symptom onset.

虽然人机交互领域越来越多地研究数字工具如何支持个人管理精神健康状况,但这些工具如何适应这些状况的时间性仍不清楚。本研究通过对五名抑郁症患者进行为期六周的每周访谈,确定了在症状波动时扩展基于技术的支持的相关设计机遇和挑战。我们的研究结果表明,参与者认为日常生活中的事件和环境对其症状有明显的影响。研究结果还表明,症状的起伏会对个人如何进行抑郁自我管理产生深远影响。虽然数字工具通常旨在帮助抑郁症患者,但我们建议它们也应在患者症状较轻时吸引他们,利用他们的精力和动力来培养习惯、制定计划和目标,并生成和组织内容,为症状发作做好准备。
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引用次数: 0
Designing Ambient Narrative-Based Interfaces to Reflect and Motivate Physical Activity. 设计基于环境叙述的界面以反映和激励身体活动。
Elizabeth L Murnane, Xin Jiang, Anna Kong, Michelle Park, Weili Shi, Connor Soohoo, Luke Vink, Iris Xia, Yu Xin, John Yang-Sammataro, Grace Young, Jenny Zhi, Paula Moya, James A Landay

Numerous technologies now exist for promoting more active lifestyles. However, while quantitative data representations (e.g., charts, graphs, and statistical reports) typify most health tools, growing evidence suggests such feedback can not only fail to motivate behavior but may also harm self-integrity and fuel negative mindsets about exercise. Our research seeks to devise alternative, more qualitative schemes for encoding personal information. In particular, this paper explores the design of data-driven narratives, given the intuitive and persuasive power of stories. We present WhoIsZuki, a smartphone application that visualizes physical activities and goals as components of a multi-chapter quest, where the main character's progress is tied to the user's. We report on our design process involving online surveys, in-lab studies, and in-the-wild deployments, aimed at refining the interface and the narrative and gaining a deep understanding of people's experiences with this type of feedback. From these insights, we contribute recommendations to guide future development of narrative-based applications for motivating healthy behavior.

现在有许多技术可以促进更积极的生活方式。然而,虽然定量数据表示(如图表、图表和统计报告)是大多数健康工具的典型代表,但越来越多的证据表明,这种反馈不仅不能激励行为,还可能损害自我完整性,并助长对锻炼的消极心态。我们的研究旨在设计替代性的、更定性的个人信息编码方案。鉴于故事的直觉和说服力,本文特别探讨了数据驱动叙事的设计。我们介绍了WhoIsZuki,这是一款智能手机应用程序,它将体育活动和目标可视化为多章节任务的组成部分,其中主角的进度与用户的进度联系在一起。我们报告了我们的设计过程,包括在线调查、实验室研究和野外部署,旨在改进界面和叙述,并通过这种类型的反馈获得对人们体验的深刻理解。根据这些见解,我们提出了一些建议,以指导未来基于叙事的应用程序的发展,以激励健康的行为。
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引用次数: 41
Relational, Flexible, Everyday: Learning from Ethics in Dementia Research. 关系、灵活、日常:从痴呆症研究中学习伦理。
James Hodge, Sarah Foley, Rens Brankaert, Gail Kenning, Amanda Lazar, Jennifer Boger, Kellie Morrissey

Engaging in participatory research in HCI raises numerous ethical complexities such as consent, researcher relationships, and participant compensation. Doing HCI work in the area of dementia amplifies these issues, and researchers in this area are modelling ethical stances to ensure researcher-participant relationships focus on meaningful engagement and care. This paper presents an insight into the kinds of ethical foci required when doing design research with people living with dementia and their carers. We interviewed 22 HCI researchers with experience working in dementia care contexts. Our qualitative analysis outlines subsequent lessons-learned, such as recognition of the participants, self-care, research impact, and subjectivity in ethical review boards. Furthermore, we found the complexity of navigating both "everyday" and more formal, institutional ethics in dementia research has implications beyond the context of working with people with dementia and outline key considerations for ethical practices in socially orientated HCI research.

在人机交互领域开展参与式研究会引发许多复杂的伦理问题,如同意、研究人员关系和参与者补偿等。在痴呆症领域开展人机交互工作会放大这些问题,该领域的研究人员正在模拟伦理立场,以确保研究人员与参与者的关系侧重于有意义的参与和关怀。本文深入探讨了与痴呆症患者及其照顾者一起进行设计研究时所需的伦理焦点。我们采访了22位具有痴呆症护理工作经验的人机交互研究人员。我们的定性分析概述了随后汲取的经验教训,例如对参与者的认可、自我保健、研究影响以及伦理审查委员会的主观性。此外,我们还发现,在痴呆症研究中,"日常 "伦理和更为正式的机构伦理的复杂性,其影响超出了与痴呆症患者一起工作的范畴,并概述了社会导向的人机交互研究中伦理实践的主要考虑因素。
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引用次数: 0
Designing Mental Health Technologies that Support the Social Ecosystem of College Students. 设计支持大学生社会生态系统的心理健康技术。
Emily G Lattie, Rachel Kornfield, Kathryn E Ringland, Renwen Zhang, Nathan Winquist, Madhu Reddy

The last decade has seen increased reports of mental health problems among college students, with college counseling centers struggling to keep up with the demand for services. Digital mental health tools offer a potential solution to expand the reach of mental health services for college students. In this paper, we present findings from a series of design activities conducted with college students and counseling center staff aimed at identifying needs and preferences for digital mental health tools. Results emphasize the social ecosystems and social support networks in a college student's life. Our findings highlight the predominant role of known peers, and the ancillary roles of unknown peers and non-peers (e.g., faculty, family) in influencing the types of digital mental health tools students desire, and the ways in which they want to learn about mental health tools. We identify considerations for designing digital mental health tools for college students that take into account the identified social factors and roles.

近十年来,大学生心理健康问题的报告越来越多,大学心理咨询中心难以满足服务需求。数字心理健康工具为扩大大学生心理健康服务的覆盖面提供了一个潜在的解决方案。在本文中,我们介绍了与大学生和心理咨询中心工作人员共同开展的一系列设计活动的结果,这些活动旨在确定数字心理健康工具的需求和偏好。研究结果强调了大学生生活中的社会生态系统和社会支持网络。我们的研究结果强调了已知同伴的主导作用,以及未知同伴和非同伴(如教师、家人)的辅助作用,这些都影响着学生渴望的数字心理健康工具的类型,以及他们希望了解心理健康工具的方式。我们确定了为大学生设计数字心理健康工具的注意事项,这些注意事项考虑到了已确定的社会因素和角色。
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引用次数: 0
Clinical Documentation as End-User Programming. 作为最终用户编程的临床文档。
Adam Rule, Isaac H Goldstein, Michael F Chiang, Michelle R Hribar

As healthcare providers have transitioned from paper to electronic health records they have gained access to increasingly sophisticated documentation aids such as custom note templates. However, little is known about how providers use these aids. To address this gap, we examine how 48 ophthalmologists and their staff create and use content-importing phrases - a customizable and composable form of note template - to document office visits across two years. In this case study, we find 1) content-importing phrases were used to document the vast majority of visits (95%), 2) most content imported by these phrases was structured data imported by data-links rather than boilerplate text, and 3) providers primarily used phrases they had created while staff largely used phrases created by other people. We conclude by discussing how framing clinical documentation as end-user programming can inform the design of electronic health records and other documentation systems mixing data and narrative text.

随着医疗服务提供者从纸质医疗记录过渡到电子医疗记录,他们获得了越来越先进的文档辅助工具,如自定义笔记模板。然而,人们对医疗服务提供者如何使用这些辅助工具知之甚少。为了弥补这一不足,我们研究了 48 位眼科医生及其员工如何创建和使用内容导入短语(一种可定制和可组合的笔记模板)来记录两年内的诊疗情况。在这项案例研究中,我们发现:1)绝大多数就诊记录都使用了内容导入短语(95%);2)这些短语导入的大部分内容都是通过数据链接导入的结构化数据,而不是模板文本;3)医疗服务提供者主要使用自己创建的短语,而工作人员则主要使用其他人创建的短语。最后,我们将讨论如何将临床文档设计为最终用户编程,从而为电子病历和其他混合数据与叙述性文本的文档系统的设计提供参考。
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引用次数: 0
Being (In)Visible: Privacy, Transparency, and Disclosure in the Self-Management of Bipolar Disorder. 可见:双相情感障碍自我管理中的隐私、透明度和披露。
Justin Petelka, Lucy Van Kleunen, Liam Albright, Elizabeth Murnane, Stephen Voida, Jaime Snyder

Research in personal informatics (PI) calls for systems to support social forms of tracking, raising questions about how privacy can and should support intentionally sharing sensitive health information. We focus on the case of personal data related to the self-tracking of bipolar disorder (BD) in order to explore the ways in which disclosure activities intersect with other privacy experiences. While research in HCI often discusses privacy as a disclosure activity, this does not reflect the ways in which privacy can be passively experienced. In this paper we broaden conceptions of privacy by defining transparency experiences and contributing factors in contrast to disclosure activities and preferences. Next, we ground this theoretical move in empirical analysis of personal narratives shared by people managing BD. We discuss the resulting emergent model of transparency in terms of implications for the design of socially-enabled PI systems. CAUTION: This paper contains references to experiences of mental illness, including self-harm, depression, suicidal ideation, etc.

个人信息学(PI)的研究呼吁系统支持社会形式的跟踪,提出了隐私如何能够和应该支持有意共享敏感健康信息的问题。我们关注与双相情感障碍(BD)自我跟踪相关的个人数据案例,以探索披露活动与其他隐私体验相交的方式。虽然HCI研究经常将隐私作为一种披露活动来讨论,但这并没有反映出隐私可以被动体验的方式。在本文中,我们通过定义透明度经验和促成因素来扩大隐私的概念,与披露活动和偏好形成对比。接下来,我们将这一理论举措建立在对管理BD的人分享的个人叙述的实证分析之上。我们从设计社会支持的PI系统的意义方面讨论了由此产生的透明度模型。注意:本文涉及精神疾病经历,包括自残、抑郁、自杀意念等。
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引用次数: 20
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Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference
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