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

Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives

The hospital setting creates a high-stakes environment where patients' lives depend on accurate tracking of health data. Despite recent work emphasizing the importance of patients' engagement in their own health care, less is known about how patients track their health and care in the hospital. Through interviews and design probes, we investigated hospitalized patients' tracking activity and analyzed our results using the stage-based personal informatics model. We used this model to understand how to support the tracking needs of hospitalized patients at each stage. In this paper, we discuss hospitalized patients' needs for collaboratively tracking their health with their care team. We suggest future extensions of the stage-based model to accommodate collaborative tracking situations, such as hospitals, where data is collected, analyzed, and acted on by multiple people. Our findings uncover new directions for HCI research and highlight ways to support patients in tracking their care and improving patient safety

The Effects of Implementing a Smartphone Application to Improve Asthma Self-Management in Adults

Asthma is one of the most common chronic diseases, affecting 20.4 million adults in the United States (CDC, 2018). While asthma can generally be controlled, patients having an exacerbation may experience missed days of work and school, limitations in daily activities, decreased enjoyment of life, and decreased productivity at home, work, and school (MarcanoBelisario et al., 2013). Therefore, the purpose of this project was to improve patients’ overall asthma control and asthma-related quality of life by encouraging self-management through patient education and the implementation of a mobile smartphone application. A total of 26 adult primary care patients with asthma participated in a focused asthma intervention: (a) a 30-minute one-on-one asthma education session utilizing a patient education guide and (b) the use of a mobile application for asthma management. Patients downloaded a free smartphone application, AsthmaMD®, and utilized the symptom tracker, medication reminders, and digital asthma action plan. The primary outcomes of the project included asthma control (ACT), asthma-related quality of life (AIS-6), and asthma literacy. Patients completed the ACT, AIS-6, and Asthma Literacy Questionnaire at their initial visit and again at four and eight weeks after the intervention. Statistical analysis was performed using repeated-measures ANOVA, and post-hoc analysis was conducted using protected t-tests. Upon completion of statistical analysis, a significant effect was found in both the ACT (F (2, 44) = 43.08, p \u3c .001) and AIS-6 (F (2, 44) = 51.621, p \u3c .001), demonstrating a significant improvement in test scores from initial evaluation to 4-week follow-up, from 4-week follow-up to 8-week follow-up and from initial evaluation to 8-week follow-up. Analysis of the Asthma Literacy Questionnaire showed an increase in knowledge that was statistically significant in all areas of asthma education. Additionally, results suggested that all participants felt the mobile application was helpful for tracking asthma symptoms. Results of this evidence-based practice project can be used to help providers improve asthma self-management by promoting education, written or digital action plans, and the use of a mobile application for symptom tracking and medication reminders

The Effects of Implementing a Smartphone Application to Improve Asthma Self-Management in Adults

Asthma is one of the most common chronic diseases, affecting 20.4 million adults in the United States (CDC, 2018). While asthma can generally be controlled, patients having an exacerbation may experience missed days of work and school, limitations in daily activities, decreased enjoyment of life, and decreased productivity at home, work, and school (MarcanoBelisario et al., 2013). Therefore, the purpose of this project was to improve patients’ overall asthma control and asthma-related quality of life by encouraging self-management through patient education and the implementation of a mobile smartphone application. A total of 26 adult primary care patients with asthma participated in a focused asthma intervention: (a) a 30-minute one-on-one asthma education session utilizing a patient education guide and (b) the use of a mobile application for asthma management. Patients downloaded a free smartphone application, AsthmaMD®, and utilized the symptom tracker, medication reminders, and digital asthma action plan. The primary outcomes of the project included asthma control (ACT), asthma-related quality of life (AIS-6), and asthma literacy. Patients completed the ACT, AIS-6, and Asthma Literacy Questionnaire at their initial visit and again at four and eight weeks after the intervention. Statistical analysis was performed using repeated-measures ANOVA, and post-hoc analysis was conducted using protected t-tests. Upon completion of statistical analysis, a significant effect was found in both the ACT (F (2, 44) = 43.08, p \u3c .001) and AIS-6 (F (2, 44) = 51.621, p \u3c .001), demonstrating a significant improvement in test scores from initial evaluation to 4-week follow-up, from 4-week follow-up to 8-week follow-up and from initial evaluation to 8-week follow-up. Analysis of the Asthma Literacy Questionnaire showed an increase in knowledge that was statistically significant in all areas of asthma education. Additionally, results suggested that all participants felt the mobile application was helpful for tracking asthma symptoms. Results of this evidence-based practice project can be used to help providers improve asthma self-management by promoting education, written or digital action plans, and the use of a mobile application for symptom tracking and medication reminders