Self-Tracking by People Living with Multiple Sclerosis: Supporting Experiences of Agency in a Chronic Neurological Condition

Multiple sclerosis is a complex neurological condition. It disrupts the central nervous system leading to an individual range of physical, cognitive, and mental impairments. Research has focused on the tracking of primary disease indicators and disability outcome measures to assess the progression of this condition. However, there is little knowledge on how technologies could support the needs of people with multiple sclerosis (MS) in self-tracking their health and wellbeing. Drawing on qualitative research and design methods this thesis provides two contributions. Firstly, it improves understanding of self-tracking in MS self-management. Interview participants reported regaining a sense of control over MS through intertwining individual self-care practices with different self-tracking tools, including paper notebooks and fitness wearables. They associated experiences of control with their agency to document their health in holistic ways, involving symptom monitoring and life journaling. However, participants criticised that self-tracking apps can impede their capacities, in particular when the user experience is focused on predefined health indicators and the optimisation of health behaviour. These findings highlight the need to support people’s individual self-care intentions and agentive capacities through customisable self- tracking approaches. Secondly, this thesis contributes the design of Trackly, a technology probe that supports people in defining and colouring pictorial trackers, such as body shapes. We identify benefits and challenges of customisable and pictorial self-tracking through a field study of Trackly in MS self-management. Having been able to support their individual self-care intentions with Trackly, participants reported a spectrum of interrelated experiences of agency, including ownership, identity, awareness, mindfulness, and control. Overall, this thesis provides a qualitative account and design perspective that demonstrate how adapting self-tracking technologies to individual care needs supported experiences of agency. These findings are particularly relevant to the design of technologies aimed at leveraging personally meaningful self-care and quality of life

Characterizing HCI Research in China: Streams, Methodologies and Future Directions

This position paper takes the first step to attempt to present the initial characterization of HCI research in China. We discuss the current streams and methodologies of Chinese HCI research based on two well-known HCI theories: Micro/Marco-HCI and the Three Paradigms of HCI. We evaluate the discussion with a survey of Chinese publications at CHI 2019, which shows HCI research in China has less attention to Macro-HCI topics and the third paradigms of HCI (Phenomenologically situated Interaction). We then propose future HCI research directions such as paying more attention to Macro-HCI topics and third paradigm of HCI, combining research methodologies from multiple HCI paradigms, including emergent users who have less access to technology, and addressing the cultural dimensions in order to provide better technical solutions and support

Social Virtual Reality as a Mental Health Tool: How People Use VRChat to Support Social Connectedness and Wellbeing

Social virtual reality (VR) platforms have increased in popularity with many people turning to these platforms to experience social connection, including a rapid influx of users during the COVID-19 pandemic. However, there is limited understanding of how people appropriate and use emerging social VR applications to actively support their mental health and wellbeing in daily life. Through an online questionnaire and exploratory interviews conducted within the social VR app VRChat during the COVID-19 pandemic, we document how social VR is being used explicitly as a mental health support tool. Participants reported positive wellbeing benefits, mostly attributed to the anonymity provided by avatars and perceived safety within digital worlds and communities of practice. We also report how people use social VR to practice social interaction, reduce negative thoughts and form strong social bonds and connections with others

Digital Mental Health and Social Connectedness

A detailed understanding of the mental health needs of people from refugee backgrounds is crucial for the design of inclusive mental health technologies. We present a qualitative account of the digital mental health experiences of women from refugee backgrounds. Working with community members and community workers of a charitable organisation for refugee women in the UK, we identify social and structural challenges, including loneliness and access to mental health technologies. Participants' accounts document their collective agency in addressing these challenges and supporting social connectedness and personal wellbeing in daily life: participants reported taking part in community activities as volunteers, sharing technological expertise, and using a wide range of non-mental health-focused technologies to support their mental health, from playing games to supporting religious practices. Our findings suggest that, rather than focusing only on individual self-care, research also needs to leverage community-driven approaches to foster social mental health experiences, from altruism to connectedness and belonging

The Shifting Sands of Labour: Changes in Shared Care Work with a Smart Home Health System

Whilst the use of smart home systems has shown promise in recent years supporting older people's activities at home, there is more evidence needed to understand how these systems impact the type and the amount of shared care in the home. It is important to understand care recipients and caregivers' labour is changed with the introduction of a smart home system to efficiently and effectively support an increasingly aging population with technology. Five older households (8 participants) were interviewed before, immediately after and three months after receiving a Smart Home Health System (SHHS). We provide an identification and documentation of critical incidents and barriers that increased inter-household care work and prevented the SHHS from being successfully accepted within homes. Findings are framed within the growing body of work on smart homes for health and care, and we provide implications for designing future systems for shared home care needs

Activity River: Visualizing Planned and Logged Personal Activities for Reflection

We present Activity River, a personal visualization tool which enables individuals to plan, log, and reflect on their self-defined activities. We are interested in supporting this type of reflective practice as prior work has shown that reflection can help people plan and manage their time effectively. Hence, we designed Activity River based on five design goals (visualize historical and contextual data, facilitate comparison of goals and achievements, engage viewers with delightful visuals, support authorship, and enable flexible planning and logging) which we distilled from the Information Visualization and Human-Computer Interaction literature. To explore our approach's strengths and limitations, we conducted a qualitative study of Activity River using a role-playing method. Through this qualitative exploration, we illustrate how our participants envisioned using our visualization to perform dynamic and continuous reflection on their activities. We observed that they were able to assess their progress towards their plans and adapt to unforeseen circumstances using our tool.Comment: 9 pages, 6 figures, AVI '20, September 28-October 2, 2020, Salerno, Italy 2020 Association for Computing Machiner

Explanation before Adoption: Supporting Informed Consent for Complex Machine Learning and IoT Health Platforms

Explaining health technology platforms to non-technical members of the public is an important part of the process of informed consent. Complex technology platforms that deal with safety-critical areas are particularly challenging, often operating within private domains (e.g. health services within the home) and used by individuals with various understandings of hardware, software, and algorithmic design. Through two studies, the first an interview and the second an observational study, we questioned how experts (e.g. those who designed, built, and installed a technology platform) supported provision of informed consent by participants. We identify a wide range of tools, techniques, and adaptations used by experts to explain the complex SPHERE sensor-based home health platform, provide implications for the design of tools to aid explanations, suggest opportunities for interactive explanations, present the range of information needed, and indicate future research possibilities in communicating technology platforms