Health stigma on Twitter:investigating the prevalence and type of stigma communication in tweets about different conditions and disorders

Background: Health-related stigma can act as a barrier to seeking treatment and can negatively impact wellbeing. Comparing stigma communication across different conditions may generate insights previously lacking from condition-specific approaches and help to broaden our understanding of health stigma as a whole.Method: A sequential explanatory mixed-methods approach was used to investigate the prevalence and type of health-related stigma on Twitter by extracting 1.8 million tweets referring to five potentially stigmatized health conditions and disorders (PSHCDs): Human Immunodeficiency Virus (HIV)/Acquired Immunodeficiency Syndrome (AIDS), Diabetes, Eating Disorders, Alcoholism, and Substance Use Disorders (SUD). Firstly, 1,500 tweets were manually coded by stigma communication type, followed by a larger sentiment analysis (n = 250,000). Finally, the most prevalent category of tweets, “Anti-Stigma and Advice” (n = 273), was thematically analyzed to contextualize and explain its prevalence.Results: We found differences in stigma communication between PSHCDs. Tweets referring to substance use disorders were frequently accompanied by messages of societal peril. Whereas, HIV/AIDS related tweets were most associated with potential labels of stigma communication. We found consistencies between automatic tools for sentiment analysis and manual coding of stigma communication. Finally, the themes identified by our thematic analysis of anti-stigma and advice were Social Understanding, Need for Change, Encouragement and Support, and Information and Advice.Conclusions: Despite one third of health-related tweets being manually coded as potentially stigmatizing, the notable presence of anti-stigma suggests that efforts are being made by users to counter online health stigma. The negative sentiment and societal peril associated with substance use disorders reflects recent suggestions that, though attitudes have improved toward physical diseases in recent years, stigma around addiction has seen little decline. Finally, consistencies between our manual coding and automatic tools for identifying language features of harmful content, suggest that machine learning approaches may be a reasonable next step for identifying general health-related stigma online

People with long-term conditions sharing personal health data via digital health technologies:a scoping review to inform design

The use of digital technology amongst people living with a range of long-term health conditions to support self-management has increased dramatically. More recently, digital health technologies to share and exchange personal health data with others have been investigated. Sharing personal health data with others is not without its risks: sharing data creates threats to the privacy and security of personal data and plays a role in trust, adoption and continued use of digital health technology. Our work aims to inform the design of these digital health technologies by investigating the reported intentions of sharing health data with others, the associated user experiences when using these digital health technologies and the trust, identity, privacy and security (TIPS) considerations for designing digital health technologies that support the trusted sharing of personal health data to support the self-management of long-term health conditions. To address these aims, we conducted a scoping review, analysing over 12,000 papers in the area of digital health technologies. We conducted a reflexive thematic analysis of 17 papers that described digital health technologies that support sharing of personal health data, and extracted design implications that could enhance the future development of trusted, private and secure digital health technologies.</p

Understanding the attitudes and experiences of people living with potentially stigmatised long-term health conditions with respect to collecting and sharing health and lifestyle data

Background: The emerging landscape of patient-generated data (PGData) provides an opportunity to collect large quantities of information that can be used to develop our understanding of different health conditions and potentially improve the quality of life for those living with long-term health condition (LTHCs). If the potential benefits of PGData are to be realised, we need a better understanding of the psychological barriers and facilitators to the collection and beneficial sharing of health and lifestyle data. Due to the understudied role that stigma plays in sharing PGData, we explore the attitudes and experiences of those living with potentially stigmatised LTHCs with respect to collecting and sharing health and lifestyle data. Methods: This study used semi-structured interviews and a card sorting task to explore the attitudes and experiences of people living with potentially stigmatised LTHCs. Fourteen adult participants who reported having a range of conditions were recruited in England. Template analysis was used to analyse interview transcripts and descriptive statistics were used for the card sorting task. Results: The findings present four overarching themes: Preferences for collecting health and lifestyle data, Importance of anonymity, Expected use of data, and Sources of emotional support. Participants illustrated a general willingness to share health and lifestyle data; however, there were some notable differences in sharing experiences, varying both by information type and recipient group. Overall, participants did not identify health-related stigma as a barrier to collecting or sharing their personal health and lifestyle data. Conclusions: We outline a number of preferences that participants feel would encourage them to collect and share data more readily, which may be considered when developing data sharing tools for the future

Spomenik: resurrecting voices in the woods

Spomenik (‘monument) is a digital memorial architecture that transposes in time otherwise hidden cultural memories of atrocity. Spomenik was designed as a simple digital audio guide, embedded in a remote rural location (Kočevski Rog, Slovenia), and working without the infrastructure normally present at national memorial sites. By resurrecting voices and cultural narratives of the deceased, positing them back in to the landscape through digital means, Spomenik opens a dialogue about the events of the past, in relation to networks of the living, exploring the role of voice and agency, as serviced through design in the act of memorialization. We contribute a detailed case study of a design-led inquiry about digital memorialization and digital preservation of cultural heritage, and a reflective account about the nature of legacy and the extent to which it is (and perhaps should be) necessarily bound to networks of collective memory, mediated through designed cultural tools

A Study of the Challenges Related to DIY Assistive Technology in the Context of Children with Disabilities

The term Do It Yourself Assistive Technology (DIY-AT) refers to the creation and adaptation of AT by non-professionals, including people with disabilities and their families, friends and caregivers. Previous research has argued that the development of technologies and services that enable people to make their own DIY-AT will lead to the rapid and low cost development of assistive devices that are tailored to meet the complex needs of individual people with disabilities. We present the results of a qualitative study that explored challenges related to the process of making DIY-AT for children with disabilities. A series of eleven semi-structured interviews with a broad range of stakeholders involved in the current use, provision and adaptation of AT for children with disabilities revealed a number of challenges relating to the prevalence and scope of ongoing DIY-AT practice, barriers to participation, and the challenges faced by makers and users of DIY-AT

From Inclusive Theatre to Inclusive Technologies: Lessons Learnt From Co-designing Touch Tours With an Inclusive Theatre Group

The HCI community has attempted to understand the role theatre can play in systems design, but the ways inclusive design methodologies could benefit from inclusive theatre are underexamined. To better understand inclusive theatre practices for technology design, we worked with the first professional inclusive theatre ensemble in Greece, which faced difficulties due to social distancing during the Covid-19 pandemic. In this paper, we attempt to better understand inclusion within such theatre practices through the co-designing of a prototype digital system for Touch Tours, an experience through touch service. We conducted a series of research through design activities with the group, building on eighteen months of ethnographic research. Our goal was to develop a service based on their practices. We contribute design implications for inclusive services, with respect to equity in experience, which enhance the activistic character of the movement, and HCI research concerned with developing technologies that support inclusion

Rich pictures for stakeholder dialogue:A polyphonic picture book

We describe the design and use of a ‘polyphonic picture book’ for engaging stakeholders and research participants with findings from an interdisciplinary project investigating how UK citizens create and manage online identities at three significant life transitions. The project delivered socio-cultural and technical findings to inform policy-making and service innovation for enhancing digital literacy in online self-representation. The picture book presented findings through multi-perspectival, fictional scenarios about experiences of life transition. We describe our use of the book with our stakeholders in five workshop settings and our evaluation of the visual format for fostering stakeholder dialogue around the findings and their transferability. This paper contributes methodological insights about using visual storytelling to scaffold interpretative, dialogical contexts of research engagement

Understanding the attitudes and experiences of people living with potentially stigmatised long-term health conditions with respect to collecting and sharing health and lifestyle data

Background: The emerging landscape of patient-generated data (PGData) provides an opportunity to collect large quantities of information that can be used to develop our understanding of different health conditions and potentially improve the quality of life for those living with long-term health condition (LTHCs). If the potential benefits of PGData are to be realised, we need a better understanding of the psychological barriers and facilitators to the collection and beneficial sharing of health and lifestyle data. Due to the understudied role that stigma plays in sharing PGData, we explore the attitudes and experiences of those living with potentially stigmatised LTHCs with respect to collecting and sharing health and lifestyle data. Methods: This study used semi-structured interviews and a card sorting task to explore the attitudes and experiences of people living with potentially stigmatised LTHCs. Adult participants who reported having a range of conditions were recruited in England. Template analysis was used to analyse interview transcripts and descriptive statistics were used for the card sorting task. Results: The findings present four overarching themes: Preferences for collecting health and lifestyle data, Importance of anonymity, Expected use of data, and Sources of emotional support. Participants illustrated a general willingness to share health and lifestyle data however there were some notable differences in sharing experiences, varying both by information type and recipient group. Overall, participants did not identify health-related stigma as a barrier to collecting or sharing their personal health and lifestyle data. Conclusions: We outline a number of preferences that participants feel would encourage them to collect and share data more readily, which may be considered when developing data sharing tools for the future

Researching AI Legibility Through Design

Everyday interactions with computers are increasingly likely to involve elements of Artificial Intelligence (AI). Encompassing a broad spectrum of technologies and applications, AI poses many challenges for HCI and design. One such challenge is the need to make AI’s role in a given system legible to the user in a meaningful way. In this paper we employ a Research through Design (RtD) approach to explore how this might be achieved. Building on contemporary concerns and a thorough exploration of related research, our RtD process reflects on designing imagery intended to help increase AI legibility for users. The paper makes three contributions. First, we thoroughly explore prior research in order to critically unpack the AI legibility problem space. Second, we respond with design proposals whose aim is to enhance the legibility, to users, of systems using AI. Third, we explore the role of design-led enquiry as a tool for critically exploring the intersection between HCI and AI research