Pub Date : 2022-04-01Epub Date: 2022-04-29DOI: 10.1145/3491102.3501995
Christina N Harrington, Radhika Garg, Amanda Woodward, Dimitri Williams
Black older adults from lower socioeconomic environments are often neglected in health technology interventions. Voice assistants have a potential to make healthcare more accessible to older adults, yet, little is known about their experiences with this type of health information seeking, especially Black older adults. Through a three-phase exploratory study, we explored health information seeking with 30 Black older adults in lower-income environments to understand how they ask health-related questions, and their perceptions of the Google Home being used for that purpose. Through our analysis, we identified the health information needs and common search topics, and discussed the communication breakdowns and types of repair performed. We contribute an understanding of cultural code-switching that has to be done by these older adults when interacting with voice assistants, and the importance of such phenomenon when designing for historically excluded groups.
{"title":"\"It's Kind of Like Code-Switching\": Black Older Adults' Experiences with a Voice Assistant for Health Information Seeking.","authors":"Christina N Harrington, Radhika Garg, Amanda Woodward, Dimitri Williams","doi":"10.1145/3491102.3501995","DOIUrl":"https://doi.org/10.1145/3491102.3501995","url":null,"abstract":"<p><p>Black older adults from lower socioeconomic environments are often neglected in health technology interventions. Voice assistants have a potential to make healthcare more accessible to older adults, yet, little is known about their experiences with this type of health information seeking, especially Black older adults. Through a three-phase exploratory study, we explored health information seeking with 30 Black older adults in lower-income environments to understand how they ask health-related questions, and their perceptions of the Google Home being used for that purpose. Through our analysis, we identified the health information needs and common search topics, and discussed the communication breakdowns and types of repair performed. We contribute an understanding of cultural code-switching that has to be done by these older adults when interacting with voice assistants, and the importance of such phenomenon when designing for historically excluded groups.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9307214/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40623463","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-01Epub Date: 2022-04-29DOI: 10.1145/3491102.3501976
Kaylee Payne Kruzan, Jonah Meyerhoff, Theresa Nguyen, David C Mohr, Madhu Reddy, Rachel Kornfield
Young adults have high rates of mental health conditions, yet they are the age group least likely to seek traditional treatment. They do, however, seek information about their mental health online, including by filling out online mental health screeners. To better understand online self-screening, and its role in help-seeking, we conducted focus groups with 50 young adults who voluntarily completed a mental health screener hosted on an advocacy website. We explored (1) catalysts for taking the screener, (2) anticipated outcomes, (3) reactions to the results, and (4) desired next steps. For many participants, the screener results validated their lived experiences of symptoms, but they were nevertheless unsure how to use the information to improve their mental health moving forward. Our findings suggest that online screeners can serve as a transition point in young people's mental health journeys. We discuss design implications for online screeners, post-screener feedback, and digital interventions broadly.
{"title":"\"I Wanted to See How Bad it Was\": Online Self-screening as a Critical Transition Point Among Young Adults with Common Mental Health Conditions.","authors":"Kaylee Payne Kruzan, Jonah Meyerhoff, Theresa Nguyen, David C Mohr, Madhu Reddy, Rachel Kornfield","doi":"10.1145/3491102.3501976","DOIUrl":"10.1145/3491102.3501976","url":null,"abstract":"<p><p>Young adults have high rates of mental health conditions, yet they are the age group least likely to seek traditional treatment. They do, however, seek information about their mental health online, including by filling out online mental health screeners. To better understand online self-screening, and its role in help-seeking, we conducted focus groups with 50 young adults who voluntarily completed a mental health screener hosted on an advocacy website. We explored (1) catalysts for taking the screener, (2) anticipated outcomes, (3) reactions to the results, and (4) desired next steps. For many participants, the screener results validated their lived experiences of symptoms, but they were nevertheless unsure how to use the information to improve their mental health moving forward. Our findings suggest that online screeners can serve as a transition point in young people's mental health journeys. We discuss design implications for online screeners, post-screener feedback, and digital interventions broadly.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2022 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9075814/pdf/nihms-1801395.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10304244","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2021-05-01Epub Date: 2021-05-07DOI: 10.1145/3411764.3445555
Elliot G Mitchell, Elizabeth M Heitkemper, Marissa Burgermaster, Matthew E Levine, Yishen Miao, Maria L Hwang, Pooja M Desai, Andrea Cassells, Jonathan N Tobin, Esteban G Tabak, David J Albers, Arlene M Smaldone, Lena Mamykina
Self-tracking can help personalize self-management interventions for chronic conditions like type 2 diabetes (T2D), but reflecting on personal data requires motivation and literacy. Machine learning (ML) methods can identify patterns, but a key challenge is making actionable suggestions based on personal health data. We introduce GlucoGoalie, which combines ML with an expert system to translate ML output into personalized nutrition goal suggestions for individuals with T2D. In a controlled experiment, participants with T2D found that goal suggestions were understandable and actionable. A 4-week in-the-wild deployment study showed that receiving goal suggestions augmented participants' self-discovery, choosing goals highlighted the multifaceted nature of personal preferences, and the experience of following goals demonstrated the importance of feedback and context. However, we identified tensions between abstract goals and concrete eating experiences and found static text too ambiguous for complex concepts. We discuss implications for ML-based interventions and the need for systems that offer more interactivity, feedback, and negotiation.
自我跟踪有助于对 2 型糖尿病(T2D)等慢性病进行个性化的自我管理干预,但对个人数据进行反思需要动力和素养。机器学习(ML)方法可以识别模式,但根据个人健康数据提出可行建议是一项关键挑战。我们介绍了 GlucoGoalie,它将 ML 与专家系统相结合,将 ML 输出转化为针对 T2D 患者的个性化营养目标建议。在一项对照实验中,患有 T2D 的参与者发现,目标建议是可以理解和执行的。一项为期四周的实地部署研究表明,接收目标建议能增强参与者的自我发现能力,选择目标凸显了个人偏好的多面性,而遵循目标的体验则证明了反馈和上下文的重要性。然而,我们发现抽象的目标和具体的饮食体验之间存在矛盾,并且发现静态文本对于复杂的概念过于模糊。我们讨论了基于 ML 的干预措施的意义,以及提供更多互动、反馈和协商的系统的必要性。
{"title":"From Reflection to Action: Combining Machine Learning with Expert Knowledge for Nutrition Goal Recommendations.","authors":"Elliot G Mitchell, Elizabeth M Heitkemper, Marissa Burgermaster, Matthew E Levine, Yishen Miao, Maria L Hwang, Pooja M Desai, Andrea Cassells, Jonathan N Tobin, Esteban G Tabak, David J Albers, Arlene M Smaldone, Lena Mamykina","doi":"10.1145/3411764.3445555","DOIUrl":"10.1145/3411764.3445555","url":null,"abstract":"<p><p>Self-tracking can help personalize self-management interventions for chronic conditions like type 2 diabetes (T2D), but reflecting on personal data requires motivation and literacy. Machine learning (ML) methods can identify patterns, but a key challenge is making actionable suggestions based on personal health data. We introduce GlucoGoalie, which combines ML with an expert system to translate ML output into personalized nutrition goal suggestions for individuals with T2D. In a controlled experiment, participants with T2D found that goal suggestions were understandable and actionable. A 4-week in-the-wild deployment study showed that receiving goal suggestions augmented participants' self-discovery, choosing goals highlighted the multifaceted nature of personal preferences, and the experience of following goals demonstrated the importance of feedback and context. However, we identified tensions between abstract goals and concrete eating experiences and found static text too ambiguous for complex concepts. We discuss implications for ML-based interventions and the need for systems that offer more interactivity, feedback, and negotiation.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2021 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9067367/pdf/nihms-1792256.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10717037","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Self-management research in HCI has addressed a variety of conditions. Yet, this literature has largely focused on neurotypical populations and chronic conditions that can be managed, leaving open questions of what self-management might look like for populations with progressive cognitive impairment. Grounded in interviews with seventeen technology savvy people with mild to moderate dementia, our analysis reveals their use of technological and social resources as part of the work of self-management. We detail how participants design self-management systems to enable desired futures, function well in their social world, and maintain control. Our discussion broadens the notion of self-management to include future-oriented, sociotechnical, self-determinate design. We advocate for expanding the way technologists, designers, and HCI scholars view people with mild to moderate dementia to recognize them as inventive creators and capable actors in self-management.
{"title":"\"Taking care of myself as long as I can\": How People with Dementia Configure Self-Management Systems.","authors":"Emma Dixon, Anne Marie Piper, Amanda Lazar","doi":"10.1145/3411764.3445225","DOIUrl":"10.1145/3411764.3445225","url":null,"abstract":"<p><p>Self-management research in HCI has addressed a variety of conditions. Yet, this literature has largely focused on neurotypical populations and chronic conditions that can be managed, leaving open questions of what self-management might look like for populations with progressive cognitive impairment. Grounded in interviews with seventeen technology savvy people with mild to moderate dementia, our analysis reveals their use of technological and social resources as part of the work of self-management. We detail how participants design self-management systems to enable desired futures, function well in their social world, and maintain control. Our discussion broadens the notion of self-management to include future-oriented, sociotechnical, self-determinate design. We advocate for expanding the way technologists, designers, and HCI scholars view people with mild to moderate dementia to recognize them as inventive creators and capable actors in self-management.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8265518/pdf/nihms-1713431.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39175027","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Anjali Devakumar, Jay Modh, Bahador Saket, Eric P S Baumer, Munmun De Choudhury
Eating disorders (EDs) constitute a mental illness with the highest mortality. Today, mobile health apps provide promising means to ED patients for managing their condition. Apps enable users to monitor their eating habits, thoughts, and feelings, and offer analytic insights for behavior change. However, not only have scholars critiqued the clinical validity of these apps, their underlying design principles are not well understood. Through a review of 34 ED apps, we uncovered 11 different data types ED apps collect, and 9 strategies they employ to support collection and reflection. Drawing upon personal health informatics and visualization frameworks, we found that most apps did not adhere to best practices on what and how data should be collected from and reflected to users, or how data-driven insights should be communicated. Our review offers suggestions for improving the design of ED apps such that they can be useful and meaningful in ED recovery.
{"title":"A Review on Strategies for Data Collection, Reflection, and Communication in Eating Disorder Apps.","authors":"Anjali Devakumar, Jay Modh, Bahador Saket, Eric P S Baumer, Munmun De Choudhury","doi":"10.1145/3411764.3445670","DOIUrl":"https://doi.org/10.1145/3411764.3445670","url":null,"abstract":"Eating disorders (EDs) constitute a mental illness with the highest mortality. Today, mobile health apps provide promising means to ED patients for managing their condition. Apps enable users to monitor their eating habits, thoughts, and feelings, and offer analytic insights for behavior change. However, not only have scholars critiqued the clinical validity of these apps, their underlying design principles are not well understood. Through a review of 34 ED apps, we uncovered 11 different data types ED apps collect, and 9 strategies they employ to support collection and reflection. Drawing upon personal health informatics and visualization frameworks, we found that most apps did not adhere to best practices on what and how data should be collected from and reflected to users, or how data-driven insights should be communicated. Our review offers suggestions for improving the design of ED apps such that they can be useful and meaningful in ED recovery.","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2021 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/3411764.3445670","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10250394","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Susanne Kirchner, Jessica Schroeder, James Fogarty, Sean A Munson
Personal health informatics continues to grow in both research and practice, revealing many challenges of designing applications that address people's needs in their health, everyday lives, and collaborations with clinicians. Research suggests strategies to address such challenges, but has struggled to translate these strategies into design practice. This study examines translation of insights from personal health informatics research into resources to support designers. Informed by a review of relevant literature, we present our development of a prototype set of design cards intended to support designers in re-thinking potential assumptions about personal health informatics. We examined our design cards in semi-structured interviews, first with 12 student designers and then with 12 health-focused professional designers and researchers. Our results and discussion reveal tensions and barriers designers encounter, the potential for translational resources to inform the design of health-related technologies, and a need to support designers in addressing challenges of knowledge, advocacy, and evidence in designing for health.
{"title":"\"They don't always think about that\": Translational Needs in the Design of Personal Health Informatics Applications.","authors":"Susanne Kirchner, Jessica Schroeder, James Fogarty, Sean A Munson","doi":"10.1145/3411764.3445587","DOIUrl":"https://doi.org/10.1145/3411764.3445587","url":null,"abstract":"<p><p>Personal health informatics continues to grow in both research and practice, revealing many challenges of designing applications that address people's needs in their health, everyday lives, and collaborations with clinicians. Research suggests strategies to address such challenges, but has struggled to translate these strategies into design practice. This study examines translation of insights from personal health informatics research into resources to support designers. Informed by a review of relevant literature, we present our development of a prototype set of design cards intended to support designers in re-thinking potential assumptions about personal health informatics. We examined our design cards in semi-structured interviews, first with 12 student designers and then with 12 health-focused professional designers and researchers. Our results and discussion reveal tensions and barriers designers encounter, the potential for translational resources to inform the design of health-related technologies, and a need to support designers in addressing challenges of knowledge, advocacy, and evidence in designing for health.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2021 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/3411764.3445587","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9281844","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Many 10-14 year olds are at the early stages of using social media, habits they develop on popular platforms can have lasting effects on their socio-emotional wellbeing. We led a remote innovation workshop with 23 middle schoolers on digital wellbeing, identity exploration, and computational concepts related to social computing. This workshop was a unique opportunity to reflect on emergent habits, discuss them with peers, and imagine oneself as an ICT innovator. Resulting themes related to participants' social wellbeing online included a) sense of belonging to communities of interest, friends, and family, b) self-care and social support strategies involving managing risks, control, and empathy, and c) experimentation while building self-confidence and bravely exploring audience reactions. Participants iteratively designed and tested a sandbox social network website, resulting in Social Sketch. Reflecting on our study, we describe the process for conceptualizing Social Sketch, and challenges in social media innovation with teenagers.
{"title":"Prototyping for Social Wellbeing with Early Social Media Users: Belonging, Experimentation, and Self-Care.","authors":"Linda Charmaraman, Catherine Grevet Delcourt","doi":"10.1145/3411764.3445332","DOIUrl":"10.1145/3411764.3445332","url":null,"abstract":"<p><p>Many 10-14 year olds are at the early stages of using social media, habits they develop on popular platforms can have lasting effects on their socio-emotional wellbeing. We led a remote innovation workshop with 23 middle schoolers on digital wellbeing, identity exploration, and computational concepts related to social computing. This workshop was a unique opportunity to reflect on emergent habits, discuss them with peers, and imagine oneself as an ICT innovator. Resulting themes related to participants' social wellbeing online included a) sense of belonging to communities of interest, friends, and family, b) self-care and social support strategies involving managing risks, control, and empathy, and c) experimentation while building self-confidence and bravely exploring audience reactions. Participants iteratively designed and tested a sandbox social network website, resulting in Social Sketch. Reflecting on our study, we describe the process for conceptualizing Social Sketch, and challenges in social media innovation with teenagers.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8182671/pdf/nihms-1706222.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39076899","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Amanda Lazar, Alisha Pradhan, Ben Jelen, Katie A Siek, Alex Leitch
Makerspaces are being introduced in a wide variety of settings, including community settings such as schools and libraries. Older adults are one group for whom making agendas are being pursued, with envisioned outcomes such as supporting agency and well-being. However, research on making and DIY with older adults typically study individuals who are already engaged in making practices or bring individuals in to a technology environment that has already been created. In this paper, we study the older adult-driven formation of a makerspace in an independent living community. Through an ethnographically-informed approach, we studied the ways that individuals considered appropriate allocation of resources towards a makerspace, scoped activities, evaluated goals, and made trade-ofs. Our analysis is centered around describing the way that this makerspace formed as well as three ways that individuals made sense of the makerspace as the planning unfolded: the openness of a space that promises to cater to interests of the population; the promise of a makerspace to involve more residents in technology, but the need to obscure the technology to make it appealing; and a valuation of the return on investment for limited fnancial and space resources. Our discussion contributes to supporting and studying early adoption of technology by older adults, complicates visions of "making for all," and presents considerations regarding the often under-specifed community of a makerspace.
{"title":"Studying the Formation of an Older Adult-Led Makerspace.","authors":"Amanda Lazar, Alisha Pradhan, Ben Jelen, Katie A Siek, Alex Leitch","doi":"10.1145/3411764.3445146","DOIUrl":"https://doi.org/10.1145/3411764.3445146","url":null,"abstract":"<p><p>Makerspaces are being introduced in a wide variety of settings, including community settings such as schools and libraries. Older adults are one group for whom making agendas are being pursued, with envisioned outcomes such as supporting agency and well-being. However, research on making and DIY with older adults typically study individuals who are already engaged in making practices or bring individuals in to a technology environment that has already been created. In this paper, we study the older adult-driven formation of a makerspace in an independent living community. Through an ethnographically-informed approach, we studied the ways that individuals considered appropriate allocation of resources towards a makerspace, scoped activities, evaluated goals, and made trade-ofs. Our analysis is centered around describing the way that this makerspace formed as well as three ways that individuals made sense of the makerspace as the planning unfolded: the openness of a space that promises to cater to interests of the population; the promise of a makerspace to involve more residents in technology, but the need to obscure the technology to make it appealing; and a valuation of the return on investment for limited fnancial and space resources. Our discussion contributes to supporting and studying early adoption of technology by older adults, complicates visions of \"making for all,\" and presents considerations regarding the often under-specifed community of a makerspace.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"593 ","pages":"1-11"},"PeriodicalIF":0.0,"publicationDate":"2021-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/3411764.3445146","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39349008","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2020-04-21eCollection Date: 2020-04-01DOI: 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.
{"title":"\"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.","authors":"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","doi":"10.1145/3313831.3376278","DOIUrl":"https://doi.org/10.1145/3313831.3376278","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"20 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1145/3313831.3376278","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38492358","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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.
{"title":"Approach Matters: Linking Practitioner Approaches to Technology Design for People with Dementia.","authors":"Emma Dixon, Amanda Lazar","doi":"10.1145/3313831.3376432","DOIUrl":"10.1145/3313831.3376432","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":74552,"journal":{"name":"Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference","volume":"2020 ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2020-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7383934/pdf/nihms-1609034.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38199348","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}