skip to main content
10.1145/3025453.3025869acmconferencesArticle/Chapter ViewAbstractPublication PageschiConference Proceedingsconference-collections
research-article

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

Published: 02 May 2017 Publication History

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.

References

[1]
Jessica S Ancker, Holly O Witteman, Baria Hafeez, Thierry Provencher, Mary Van de Graaf, and Esther Wei. 2015. "You Get Reminded You're a Sick Person": Personal Data Tracking and Patients With Multiple Chronic Conditions. Journal of Medical Internet Research 17, 8.
[2]
Amid Ayobi, Paul Marshall, and Anna L. Cox. 2016. Reflections on 5 Years of Personal Informatics: Rising Concerns and Emerging Directions. In Proceedings of the 2016 CHI Conference Extended Abstracts on Human Factors in Computing Systems (CHI EA '16), 2774--2781.
[3]
Jakob E. Bardram, Mads Frost, Károly Szántó, Maria Faurholt-Jepsen, Maj Vinberg, and Lars Vedel Kessing. 2013. Designing Mobile Health Technology for Bipolar Disorder: A Field Trial of the Monarca System. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '13), 2627--2636.
[4]
Ann Blandford, Dominic Furniss, and Stephann Makri. 2016. Qualitative HCI Research: Going Behind the Scenes. Synthesis Lectures on Human-Centered Informatics 9, 1: 1--115.
[5]
Virginia Braun and Victoria Clarke. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology 3, 2: 77--101.
[6]
Yunan Chen. 2010. Take It Personally: Accounting for Individual Difference in Designing Diabetes Management Systems. In Proceedings of the 8th ACM Conference on Designing Interactive Systems (DIS '10), 252--261.
[7]
Eun Kyoung Choe, Nicole B. Lee, Bongshin Lee, Wanda Pratt, and Julie A. Kientz. 2014. Understanding Quantified-selfers' Practices in Collecting and Exploring Personal Data. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '14), 1143--1152.
[8]
Felicia Cordeiro, Daniel A. Epstein, Edison Thomaz, Elizabeth Bales, Arvind K. Jagannathan, Gregory D. Abowd, and James Fogarty. 2015. Barriers and Negative Nudges: Exploring Challenges in Food Journaling. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI '15), 1159--1162.
[9]
A. L. Cox, J. Bird, and R. Fleck. 2013. Digital Epiphanies: how self-knowledge can change habits and our attitudes towards them. In Presented at: The 27th International British Computer Society Human Computer Interaction Conference: The Internet of things, Brunel University, London, UK. (2013). http://www.digitalepiphanies.org/publications.html
[10]
Andrea Döring, Caspar F. Pfueller, Friedemann Paul, and Jan Dörr. 2013. Exercise in Multiple Sclerosis -- An Integral Component of Disease Management. In Neurodegenerative Diseases: Integrative PPPM Approach as the Medicine of the Future, Silvia Mandel (ed.). Springer Netherlands, 277--299.
[11]
Martin Duddy, Martin Lee, Owen Pearson, Esmaeil Nikfekr, Abhijit Chaudhuri, Fran Percival, Megan Roberts, and Carolyn Whitlock. 2014. The UK patient experience of relapse in Multiple Sclerosis treated with first disease modifying therapies. Multiple Sclerosis and Related Disorders 3, 4: 450--456.
[12]
Chris Elsden, Abigail C. Durrant, and David S. Kirk. 2016. It's just my History isn't it?: Understanding Smart Journaling Practices. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16), 2819--2831.
[13]
Nikki Embrey. 2014. Multiple sclerosis: managing a complex neurological disease. Nursing Standard 29, 11: 49--58.
[14]
Daniel A. Epstein, Jennifer H. Kang, Laura R. Pina, James Fogarty, and Sean A. Munson. 2016. Reconsidering the device in the drawer: lapses as a design opportunity in personal informatics. In Proceedings of the 2016 ACM International Joint Conference on Pervasive and Ubiquitous Computing, 829--840.
[15]
Daniel A. Epstein, An Ping, James Fogarty, and Sean A. Munson. 2015. A Lived Informatics Model of Personal Informatics. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp '15), 731--742.
[16]
Ramesh Farzanfar, Sophie Frishkopf, Robert Friedman, and Kevin Ludena. 2007. Evaluating an automated mental health care system: making meaning of human--computer interaction. Computers in Human Behavior 23, 3: 1167--1182.
[17]
Sergio Felipe, Aneesha Singh, Caroline Bradley, Amanda CdeC Williams, and Nadia BianchiBerthouze. 2015. Roles for Personal Informatics in Chronic Pain. In Proceedings of the 9th International Conference on Pervasive Computing Technologies for Healthcare (Pervasive Health '15), 161--168. http://dl.acm.org/citation.cfm?id=2826165.2826189
[18]
Daniel Harrison, Paul Marshall, Nadia Bianchi Berthouze, and Jon Bird. 2015. Activity Tracking: Barriers, Workarounds and Customisation. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing (UbiComp '15), 617--621.
[19]
Ravi Karkar, James Fogarty, Julie A. Kientz, Sean A. Munson, Roger Vilardaga, and Jasmine Zia. 2015. Opportunities and Challenges for Self-experimentation in Self-tracking. In Adjunct Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing and Proceedings of the 2015 ACM International Symposium on Wearable Computers (UbiComp/ISWC'15 Adjunct), 991--996.
[20]
Ravi Karkar, Jasmine Zia, Roger Vilardaga, Sonali R. Mishra, James Fogarty, Sean A. Munson, and Julie A. Kientz. 2015. A framework for self-experimentation in personalized health. Journal of the American Medical Informatics Association: ocv150.
[21]
Karina Kusk, Dorthe B. Nielsen, Troels Thylstrup, Niels Holm Rasmussen, Jacob Jorvang, Christian F. Pedersen, and Steffen Wagner. 2013. Feasibility of using a lightweight context-aware system for facilitating reliable home blood pressure self measurements. In Pervasive Computing Technologies for Healthcare (Pervasive Health), 2013 7th International Conference on, 236--239.
[22]
Amanda Lazar, Christian Koehler, Joshua Tanenbaum, and David H. Nguyen. 2015. Why we use and abandon smart devices. In Proceedings of the 2015 ACM International Joint Conference on Pervasive and Ubiquitous Computing, 635--646.
[23]
Ian Li, Anind Dey, and Jodi Forlizzi. 2010. A Stage-based Model of Personal Informatics Systems. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '10), 557--566.
[24]
Wanyu Liu, Bernd Ploderer, and Thuong Hoang. 2015. In Bed with Technology: Challenges and Opportunities for Sleep Tracking. In Proceedings of the Annual Meeting of the Australian Special Interest Group for Computer Human Interaction (OzCHI '15), 142--151.
[25]
Deborah Lupton and Annemarie Jutel. 2015. "It's like having a physician in your pocket!" A critical analysis of self-diagnosis smartphone apps. Social Science & Medicine 133: 128--135.
[26]
Haley MacLeod, Kim Oakes, Danika Geisler, Kay Connelly, and Katie Siek. 2015. Rare world: Towards technology for rare diseases. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems, 1145--1154.
[27]
Haley MacLeod, Anthony Tang, and Sheelagh Carpendale. 2013. Personal informatics in chronic illness management. In Proceedings of Graphics Interface 2013, 149--156. http://dl.acm.org/citation.cfm?id=2532155
[28]
Lena Mamykina, Andrew D. Miller, Elizabeth D. Mynatt, and Daniel Greenblatt. 2010. Constructing identities through storytelling in diabetes management. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, 1203--1212. http://dl.acm.org/citation.cfm?id=1753507
[29]
Lena Mamykina, Elizabeth Mynatt, Patricia Davidson, and Daniel Greenblatt. 2008. MAHI: Investigation of Social Scaffolding for Reflective Thinking in Diabetes Management. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '08), 477--486.
[30]
John McCarthy and Peter Wright. 2004. Technology as experience. interactions 11, 5: 42--43.
[31]
James McIninch, Shoibal Datta, Pronabesh DasMahapatra, Emil Chiauzzi, Rishi Bhalerao, Alicia Spector, Sherrie Goldstein, Liz Morgan, and Jane Relton. 2015. Remote Tracking of Walking Activity in MS Patients in a Real-World Setting (P3.209). Neurology 84, 14 Supplement: P3.209.
[32]
Cecily Morrison, Peter Culmer, Helena Mentis, and Tamar Pincus. 2014. Vision-based body tracking: turning Kinect into a clinical tool. Disability and Rehabilitation: Assistive Technology: 1--5.
[33]
Joseph W. Newbold, Nadia Bianchi-Berthouze, Nicolas E. Gold, Ana Tajadura-Jiménez, and Amanda CdC Williams. 2016. Musically Informed Sonification for Chronic Pain Rehabilitation: Facilitating Progress & Avoiding Over-doing. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, 5698--5703.
[34]
Francisco Nunes, Nervo Verdezoto, Geraldine Fitzpatrick, Morten Kyng, Erik Grönvall, and Cristiano Storni. 2015. Self-Care Technologies in HCI: Trends, Tensions, and Opportunities. ACM Trans. Comput. Hum. Interact. 22, 6: 33:1--33:45.
[35]
Johanna Renny Octavia, Karin Coninx, and Peter Feys. 2012. As i am not you: accommodating user diversity through adaptive rehabilitation training for multiple sclerosis patients. In Proceedings of the 24th Australian Computer-Human Interaction Conference, 424--432. http://dl.acm.org/citation.cfm?id=2414603
[36]
Aisling Ann O'Kane, Yvonne Rogers, and Ann E. Blandford. 2015. Concealing or Revealing Mobile Medical Devices?: Designing for Onstage and Offstage Presentation. In Proceedings of the 33rd annual ACM conference on human factors in computing systems, 1689--1698.
[37]
Francesco Pagnini, Katherine Bercovitz, and Ellen Langer. 2016. Perceived control and mindfulness: Implications for clinical practice. Journal of Psychotherapy Integration 26, 2: 91.
[38]
Sun Young Park and Yunan Chen. 2015. Individual and Social Recognition: Challenges and Opportunities in Migraine Management. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work; Social Computing (CSCW '15), 1540--1551.
[39]
Lukasz Piwek, David A. Ellis, Sally Andrews, and Adam Joinson. 2016. The Rise of Consumer Health Wearables: Promises and Barriers. PLOS Med 13, 2: e1001953.
[40]
John Rooksby, Mattias Rost, Alistair Morrison, and Matthew Chalmers Chalmers. 2014. Personal Tracking As Lived Informatics. In Proceedings of the 32Nd Annual ACM Conference on Human Factors in Computing Systems (CHI '14), 1163--1172.
[41]
Layal Shammas, Tom Zentek, Birte von Haaren, Stefan Schlesinger, Stefan Hey, and Asarnusch Rashid. 2014. Home-based system for physical activity monitoring in patients with multiple sclerosis (Pilot study). BioMedical Engineering OnLine 13, 1: 1--15.
[42]
Cristiano Storni. 2013. Design challenges for ubiquitous and personal computing in chronic disease care and patient empowerment: a case study rethinking diabetes self-monitoring. Personal and Ubiquitous Computing 18, 5: 1277--1290.
[43]
Kenneth A. Wallston, Barbara Strudler Wallston, Shelton Smith, and Carolyn J. Dobbins. 1987. Perceived control and health. Current Psychology 6, 1: 5--25.
[44]
T. J. Yun, H. Y. Jeong, H. R. Lee, R. I. Arriaga, and G. D. Abowd. 2010. Assessing asthma management practices through in-home technology probes. In 2010 4th International Conference on Pervasive Computing Technologies for Healthcare, 1--9.

Cited By

View all
  • (2024)Perceived usefulness of digital self-tracking among people with multiple sclerosisDIGITAL HEALTH10.1177/2055207624126438910Online publication date: 5-Aug-2024
  • (2024)Exploring Patient-Generated Annotations to Digital Clinical Symptom Measures for Patient-Centered CommunicationProceedings of the ACM on Human-Computer Interaction10.1145/36869978:CSCW2(1-26)Online publication date: 8-Nov-2024
  • (2024)Therapy for Therapists: Design Opportunities to Support the Psychological Well-being of Mental Health WorkersProceedings of the ACM on Human-Computer Interaction10.1145/36869578:CSCW2(1-34)Online publication date: 8-Nov-2024
  • Show More Cited By

Index Terms

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

      Recommendations

      Comments

      Information & Contributors

      Information

      Published In

      cover image ACM Conferences
      CHI '17: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems
      May 2017
      7138 pages
      ISBN:9781450346559
      DOI:10.1145/3025453
      Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than the author(s) must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected].

      Sponsors

      Publisher

      Association for Computing Machinery

      New York, NY, United States

      Publication History

      Published: 02 May 2017

      Permissions

      Request permissions for this article.

      Check for updates

      Author Tags

      1. chronic conditions
      2. multiple sclerosis
      3. perceived control
      4. personal informatics
      5. self-care technologies
      6. self-tracking

      Qualifiers

      • Research-article

      Funding Sources

      • Engineering and Physical Sciences Research Council

      Conference

      CHI '17
      Sponsor:

      Acceptance Rates

      CHI '17 Paper Acceptance Rate 600 of 2,400 submissions, 25%;
      Overall Acceptance Rate 6,199 of 26,314 submissions, 24%

      Upcoming Conference

      CHI 2025
      ACM CHI Conference on Human Factors in Computing Systems
      April 26 - May 1, 2025
      Yokohama , Japan

      Contributors

      Other Metrics

      Bibliometrics & Citations

      Bibliometrics

      Article Metrics

      • Downloads (Last 12 months)198
      • Downloads (Last 6 weeks)20
      Reflects downloads up to 13 Feb 2025

      Other Metrics

      Citations

      Cited By

      View all
      • (2024)Perceived usefulness of digital self-tracking among people with multiple sclerosisDIGITAL HEALTH10.1177/2055207624126438910Online publication date: 5-Aug-2024
      • (2024)Exploring Patient-Generated Annotations to Digital Clinical Symptom Measures for Patient-Centered CommunicationProceedings of the ACM on Human-Computer Interaction10.1145/36869978:CSCW2(1-26)Online publication date: 8-Nov-2024
      • (2024)Therapy for Therapists: Design Opportunities to Support the Psychological Well-being of Mental Health WorkersProceedings of the ACM on Human-Computer Interaction10.1145/36869578:CSCW2(1-34)Online publication date: 8-Nov-2024
      • (2024)The Unanticipated Use of Fitness Tracking Technologies During Post-COVID SyndromeProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3661617(556-570)Online publication date: 1-Jul-2024
      • (2024)Studying Self-Care with Generative AI Tools: Lessons for DesignProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3661614(1620-1637)Online publication date: 1-Jul-2024
      • (2024)Designing for Participatory Data Governance: Insights from People with Parkinson'sProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3661529(541-555)Online publication date: 1-Jul-2024
      • (2024)"Data Is One Thing, But I Want To Know The Story Behind": Designing For Self-Tracking and Remote Patient Monitoring In The Context Of Multiple Sclerosis CareProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3661499(597-618)Online publication date: 1-Jul-2024
      • (2024)The Hidden Burden: Encountering and Managing (Unintended) Stigma in Children with Serious IllnessesProceedings of the ACM on Human-Computer Interaction10.1145/36410218:CSCW1(1-35)Online publication date: 26-Apr-2024
      • (2024)Mediating the Sacred: Configuring a Design Space for Religious and Spiritual Tangible Interactive ArtifactsProceedings of the Eighteenth International Conference on Tangible, Embedded, and Embodied Interaction10.1145/3623509.3633353(1-22)Online publication date: 11-Feb-2024
      • (2024)My Data, My Choice, My Insights: Women's Requirements when Collecting, Interpreting and Sharing their Personal Health DataProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642851(1-18)Online publication date: 11-May-2024
      • Show More Cited By

      View Options

      Login options

      View options

      PDF

      View or Download as a PDF file.

      PDF

      eReader

      View online with eReader.

      eReader

      Figures

      Tables

      Media

      Share

      Share

      Share this Publication link

      Share on social media