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People with chronic illness often fluctuate between “good days” and “bad days” where symptoms are more or less severe depending on a range of factors and triggers. Our research contributes preliminary empirical knowledge on technology use during chronic illness depending on fluctuations in symptoms over time. We conducted a scoping study with people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to understand how their illness shapes how they use technologies in their everyday lives. This research contributes a timely HCI lens on the under-researched illness of ME/CFS, proposes the “trajectories of technology use” model that can be used to articulate how technologies are used during chronic illness, and points to design openings for technologies that are more accessible for people who experience chronic fatigue, sensory sensitivities and cognitive limitations. These design openings include non-screen-based technologies, and designing technologies that acknowledge and adapt to the changing body during fluctuations in symptoms.
Self-tracking and personal informatics offer important potential in chronic condition management, but such potential is often undermined by difficulty in aligning self-tracking tools to an individual's goals. Informed by prior proposals of goal-directed tracking, we designed and developed MigraineTracker, a prototype app that emphasizes explicit expression of goals for migraine-related self-tracking. We then examined migraine patient experiences in a deployment study for an average of 12+ months, including a total of 50 interview sessions with 10 patients working with 3 different clinicians. Patients were able to express multiple types of goals, evolve their goals over time, align tracking to their goals, personalize their tracking, reflect in the context of their goals, and gain insights that enabled understanding, communication, and action. We discuss how these results highlight the importance of accounting for distinct and concurrent goals in personal informatics together with implications for the design of future goal-directed personal informatics tools.
People with Parkinson's Disease (PD) can slow the progression of their symptoms with physical therapy. However, clinicians lack insight into patients’ motor function during daily life, preventing them from tailoring treatment protocols to patient needs. This paper introduces PD-Insighter, a system for comprehensive analysis of a person's daily movements for clinical review and decision-making. PD-Insighter provides an overview dashboard for discovering motor patterns and identifying critical deficits during activities of daily living and an immersive replay for closely studying the patient's body movements with environmental context. Developed using an iterative design study methodology in consultation with clinicians, we found that PD-Insighter's ability to aggregate and display data with respect to time, actions, and local environment enabled clinicians to assess a person's overall functioning during daily life outside the clinic. PD-Insighter's design offers future guidance for generalized multiperspective body motion analytics, which may significantly improve clinical decision-making and slow the functional decline of PD and other medical conditions.
While previous HCI research has examined chronic care management for children, less is known about supporting families with young children facing serious illnesses. We interviewed 12 families affected by cystic fibrosis (CF) to understand their experiences and explore opportunities to support CF management. We identified three stages of CF management in young children: diagnosis at birth, parental navigation of CF management in the early years, and gradual involvement of children in their CF care. We underscore child development milestones as a key macro-temporal structure in children’s health management, the multifaceted and evolving parental values in crafting a safe place for children, and the balancing acts parents conduct to recreate this safe place as their children grow. We provide design implications to inform the future of child-centered and family-oriented health technologies that can evolve with parents’ and children’s values to assist in creating a safe environment for managing children’s health.
Millions of individuals with diabetes use glucose monitors to track blood sugar levels. Research shows that such individuals seek to customize different aspects of their interactions with these devices, including how they engage with, decorate, and wear them. However, it remains challenging to tailor both device form and function to accommodate individual needs. To address this challenge, we introduce GlucoMaker, a system for collaboratively customizing physical design aspects of glucose monitors. Prior to designing GlucoMaker, we conducted a prototyping and focus group study to understand customization preferences and collaboration benefits. GlucoMaker provides individuals with the ability to a) select monitor form and function preferences, b) alter predefined and downloadable digital model files, c) receive feedback on monitor designs from stakeholders, and d) learn technical design aspects. We further demonstrate the versatility and design space of GlucoMaker with three examples of different form and function use cases.