Informing the Design of Personal Informatics Technologies for Unpredictable Chronic Conditions

Personal informatics technologies, such as consumer fitness tracking devices, have an enormous potential to transform the self-management of chronic conditions. However, it is unclear how people living with relapsing and progressive illnesses experience personal informatics tools in everyday life: what values and challenges are associated with their use? This research informs the design of future health tracking technologies through an ethnographic design study of the use and experience of personal informatics tools in multiple sclerosis (MS) self-management. Initial findings suggest that future health tracking technologies should acknowledge people’s emotional wellbeing and foster flexible and mindful self-tracking, rather than focusing only on tracking primary

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

Homes for Life & Other Stories The Use and Evaluation of Design Fiction as a Means to Understand Sensitive Settings: a Case Study of Exploring Technologies for Dementia Care

Design fictions are used in HCI to position emerging technologies in fictional future worlds, through which the complexities of our relationships with technologies can be represented, explored and experienced. They promise to stimulate discussions about sensitive topics, such as the future of technology-enabled care, a complex area with contrasting emotional, social and practical views and wishes. However, the term design fiction is currently associated with a wide range of uses, and artefacts. It is also linked to contrasting philosophies and frameworks, which are often not made explicit, as I show in an initial survey with practitioners. This makes it difficult to identify what makes a design fiction good or effective for different purposes. This thesis aims to answer the research question: How can design fiction be used and evaluated in understanding sensitive settings? I turn to the Constructive Design Research framework and adapt it to classify how design fiction is used in HCI. I outline how design fiction can be used in the showroom approach, where it is most commonly placed, but also how it can be used as a lab and field approach to gather insights into the responses to design fictions. I developed design fictions and explored how they can be used to further discussions around the use of monitoring technologies in dementia care: an area challenging to research because of ethical issues associated with deployment studies of prototype technologies. The contribution of this thesis is threefold: first, a methodological contribution into the use of design fiction in HCI and an evaluation of the Constructive Design Research framework as a means to classify research through design fiction. Second, insights into participants’ views and wishes about technology-led care in regards to dementia. Third, a design contribution of artefacts that can be used to stimulate further debate around the topic