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

Ayobi, Amid; (2020) Self-Tracking by People Living with Multiple Sclerosis: Supporting Experiences of Agency in a Chronic Neurological Condition. Doctoral thesis (Ph.D), UCL (University College London). Green open access

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Abstract

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.

Type: Thesis (Doctoral)
Qualification: Ph.D
Title: Self-Tracking by People Living with Multiple Sclerosis: Supporting Experiences of Agency in a Chronic Neurological Condition
Event: University College London
Open access status: An open access version is available from UCL Discovery
Language: English
Additional information: Copyright © The Author 2020. Original content in this thesis is licensed under the terms of the Creative Commons Attribution 4.0 International (CC BY 4.0) Licence (https://creativecommons.org/licenses/by/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request.
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > UCL BEAMS
UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Engineering Science
UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Engineering Science > Dept of Computer Science
URI: https://discovery.ucl.ac.uk/id/eprint/10112789
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