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Quantifying the Body and Caring for the Mind: Self-Tracking in Multiple Sclerosis

Ayobi, A; Marshall, P; Cox, A; Chen, Y; (2017) Quantifying the Body and Caring for the Mind: Self-Tracking in Multiple Sclerosis. In: Mark, G and Fussell, S, (eds.) CHI '17: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems. (pp. pp. 6889-6901). Association for Computing Machinery (ACM): New York, NY, USA. Green open access

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Abstract

Consumer health technologies have an enormous potential to transform the self-management of chronic conditions. However, it is unclear how individuals use self-tracking technologies to manage them. This in-depth interview study explores self-tracking practices in multiple sclerosis (MS), a complex neurological disease that causes physical, cognitive, and psychological symptoms. Our findings illustrate that when faced the unpredictable and degenerative nature of MS, individuals regained a sense of control by intertwining self-care practices with different self-tracking technologies. They engaged in disease monitoring, fitness tracking, and life journaling to quantify the body and care for the mind. We focus attention on the role of emotional wellbeing and the experience of control in self-tracking and managing MS. Finally, we discuss in which ways self-tracking technologies could support the experiential nature of control and foster mindful experiences rather than focusing only on tracking primary disease indicators.

Type: Proceedings paper
Title: Quantifying the Body and Caring for the Mind: Self-Tracking in Multiple Sclerosis
Event: 2017 CHI Conference on Human Factors in Computing Systems (CHI '17)
Location: Denver, CO, USA
Dates: 06 May 2017 - 11 May 2017
ISBN-13: 9781450346559
Open access status: An open access version is available from UCL Discovery
DOI: 10.1145/3025453.3025869
Publisher version: http://dx.doi.org/10.1145/3025453.3025869
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: self-care technologies, personal informatics, self-tracking, perceived control, chronic conditions, multiple sclerosis
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Div of Psychology and Lang Sciences > UCL Interaction Centre
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: http://discovery.ucl.ac.uk/id/eprint/1543127
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