Self-tracking in Parkinson’s: The lived efforts of self-management

People living with Parkinson's disease engage in self-tracking as part of their health self-management. Whilst health technologies designed for this group have primarily focused on improving the clinical assessments of the disease, less attention has been given to how people with Parkinson's use technology to track and manage their disease in their everyday experience. We report on a qualitative study in which we systematically analysed posts from an online health community (OHC) comprising people with Parkinson's (PwP). Our findings show that PwP track a diversity of information and use a wide range of digital and non-digital tools, informed by temporal and structured practices. Using an existing framework of sensemaking for chronic disease self-management, we also identify new ways in which PwP engage in sensemaking, alongside a set of new challenges that are particular to the character of this chronic disease. We relate our findings to technologies for self-tracking offering design implications

Designing for Reflection on Shared HIV Health Information

People living with chronic conditions are increasingly turning to digital technologies to track their health, coupled with reaching out to their peers to make sense of fluctuations in their health. However, there is a lack of appropriate technologies to support reflecting on shared personal health information. This paper reports on a study investigating how technology could be designed to support people living with HIV in reflecting on shared personal health information. Participants used two design provocations to reflect on changes in their health. Results showed that the design provocations encouraged reflection, with higher levels of reflection appearing to require greater use of peer information. We contribute a new understanding of how reflection on shared health information takes place and consider the next generation of digital technologies for people living with HIV

"This Girl is on Fire": Sensemaking in an Online Health Community for Vulvodynia

Online health communities (OHCs) allow people living with a shared diagnosis or medical condition to connect with peers for social support and advice. OHCs have been well studied in conditions like diabetes and cancer, but less is known about their role in enigmatic diseases with unknown or complex causal mechanisms. In this paper, we study one such condition: Vulvodynia, a chronic pain syndrome of the vulvar region. Through observations of and interviews with members of a vulvodynia Facebook group, we found that while the interaction types are broadly similar to those found in other OHCs, the women spent more time seeking basic information and building individualized management plans. They also encounter significant emotional and interpersonal challenges, which they discuss with each other. We use this study to extend the field's understanding of OHCs, and to propose implications for the design of self-tracking tools to support sensemaking in enigmatic conditions

Data, Data Everywhere, and Still Too Hard to Link: Insights from User Interactions with Diabetes Apps

For those with chronic conditions, such as Type 1 diabetes, smartphone apps offer the promise of an affordable, convenient, and personalized disease management tool. How- ever, despite significant academic research and commercial development in this area, diabetes apps still show low adoption rates and underwhelming clinical outcomes. Through user-interaction sessions with 16 people with Type 1 diabetes, we provide evidence that commonly used interfaces for diabetes self-management apps, while providing certain benefits, can fail to explicitly address the cognitive and emotional requirements of users. From analysis of these sessions with eight such user interface designs, we report on user requirements, as well as interface benefits, limitations, and then discuss the implications of these findings. Finally, with the goal of improving these apps, we identify 3 questions for designers, and review for each in turn: current shortcomings, relevant approaches, exposed challenges, and potential solutions

Designing for Diabetes Decision Support Systems with Fluid Contextual Reasoning

Type 1 diabetes is a potentially life-threatening chronic condition that requires frequent interactions with diverse data to inform treatment decisions. While mobile technolo- gies such as blood glucose meters have long been an essen- tial part of this process, designing interfaces that explicitly support decision-making remains challenging. Dual-process models are a common approach to understanding such cog- nitive tasks. However, evidence from the first of two stud- ies we present suggests that in demanding and complex situations, some individuals approach disease management in distinctive ways that do not seem to fit well within existing models. This finding motivated, and helped frame our second study, a survey (n=192) to investigate these behaviors in more detail. On the basis of the resulting analysis, we posit Fluid Contextual Reasoning to explain how some people with diabetes respond to particular situations, and discuss how an extended framework might help inform the design of user interfaces for diabetes management

Coaching Self-Management Through Analytic Textualization

Increased patient self-management is emphasized in literature and policy as an important factor in handling chronic diseases. In this paper, we study a project where patients are guided into self-management through remote care. Based on a semiotic approach, we analyze this as a case of digital textualization. We show how the health practitioners utilize an analytic understanding of health in their communication with patients. In these practices, they aim to motivate and enable patients to cope with their disease through digital representations. Our findings show that digital textualization is a constitutive feature of remote care’s materiality. The digital is not only a medium, rather its materiality is partaking in shaping the social and the personal, and the meanings that can arise in their intersection

Medication Management: The Macrocognitive Workflow of Older Adults With Heart Failure

BACKGROUND: Older adults with chronic disease struggle to manage complex medication regimens. Health information technology has the potential to improve medication management, but only if it is based on a thorough understanding of the complexity of medication management workflow as it occurs in natural settings. Prior research reveals that patient work related to medication management is complex, cognitive, and collaborative. Macrocognitive processes are theorized as how people individually and collaboratively think in complex, adaptive, and messy nonlaboratory settings supported by artifacts. OBJECTIVE: The objective of this research was to describe and analyze the work of medication management by older adults with heart failure, using a macrocognitive workflow framework. METHODS: We interviewed and observed 61 older patients along with 30 informal caregivers about self-care practices including medication management. Descriptive qualitative content analysis methods were used to develop categories, subcategories, and themes about macrocognitive processes used in medication management workflow. RESULTS: We identified 5 high-level macrocognitive processes affecting medication management-sensemaking, planning, coordination, monitoring, and decision making-and 15 subprocesses. Data revealed workflow as occurring in a highly collaborative, fragile system of interacting people, artifacts, time, and space. Process breakdowns were common and patients had little support for macrocognitive workflow from current tools. CONCLUSIONS: Macrocognitive processes affected medication management performance. Describing and analyzing this performance produced recommendations for technology supporting collaboration and sensemaking, decision making and problem detection, and planning and implementation

Online Health Communities as a resource for collective sensemaking for men who experience fertility difficulty

Online health communities (OHCs) are dedicated spaces where users discuss specific topics in an anonymous virtual and asynchronous environment. This space can be valuable for men who experience fertility difficulty by providing a safe environment for them to share information and advice to understand their condition and share their experiences. I present findings from our study investigating men’s use of online communities. 603 posts from OHCs were qualitatively analysed to understand how men use online health communities when they experience a fertility difficulty. We found that peer support within these communities facilitated men to navigate a process of collective sensemaking to understand and accept a “new normal” within their fertility prognosis