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COVID Long Haul (CLH) is an emerging chronic illness with varied patient experiences. Our understanding of CLH is often limited to data from electronic health records (EHRs), such as diagnoses or problem lists, which do not capture the volatility and severity of symptoms or their impact. To better understand the unique presentation of CLH, we conducted a 3-month long cohort study with 14 CLH patients, collecting objective (EHR, daily Fitbit logs) and subjective (weekly surveys, interviews) data. Our findings reveal a complex presentation of symptoms, associated uncertainty, and the ensuing impact CLH has on patients' personal and professional lives. We identify patient needs, practices, and challenges around adhering to clinical recommendations, engaging with health data, and establishing "new normals" post COVID. We reflect on the potential found at the intersection of these various data streams and the persuasive heuristics possible when designing for this new population and their specific needs.
While online parenting interventions have been shown to improve youth mental health, parents find it challenging to engage with and implement strategies from self-directed interventions. Our study purposefully designed a parent peer-support community for parents seeking support. Our two-phased qualitative study included parent interviews and design workshops. Our findings show that while parents need others' lived experiences to learn about parenting, perceived judgment and self-doubt can stop them from actively contributing to the peer support group. To address this design challenge, we operationalised parents' needs and challenges gained in the interviews and workshops into design implications. We demonstrate a parent-centered design approach where we formulate design implications that integrate parents' needs and expectations with multidisciplinary theoretical and empirical evidence to deepen and concretise the design for an online parent peer-support community that cultivates empathy, encourages confidence and self-efficacy, and motivates change and growth.
Providing care to individuals with chronic diseases benefits from a multidisciplinary approach and longitudinal symptom, event, and disease monitoring, in and out of clinical facilities. Technological advancements, including the ubiquitous presence of sensors and devices, present opportunities to collect large amounts of data and extract evidence-based insights about the patient and disease. Nevertheless, practical examples of clinical utility of those technologies remain sparse, and in specific focus areas (e.g, insights from a single device). This paper explores the challenges and opportunities of multidisciplinary clinical dashboards to support clinicians caring for people with chronic diseases. We report on a focus group and co-design workshops with a multidisciplinary team of clinicians and HCI researchers. We offer insights into how technological outcomes and visualizations can enhance clinical practice and the intricacies of information-sharing dynamics. We discuss the potential of dashboards to trigger actions in clinical settings and emphasize the benefits of customizable dashboards.
While chronic disease afflicts a large Indian population, the technologies used to manage chronic diseases have largely been informed by studies conducted in other sociocultural contexts. To address this gap, we conducted qualitative interviews with 21 patients clinically diagnosed with abnormal blood pressure (BP) living in low-resourced communities of Haryana, Uttarakhand and Uttar Pradesh in India. We found that patients' trust in the BP ecosystem and social ties plays a significant role in shaping their perceptions of technology and chronic care. Trust in one actor of the ecosystem fosters trust in another, e.g., trust in BP reading depended on the type of device and the person measuring the BP. We also observed nuanced sharing and intermediation of BP devices. Based on our findings, we recommend designs to boost patients' trust, familiarity, and access to technologies used in BP management and improve their experience of care in low-resource settings in India.