Fieldwork provides essential access to participants’ everyday practices, but this close engagement also exposes researchers to unpredictable ethical dilemmas. Navigating these dilemmas can be challenging for researchers because ethics principles, codes of conduct, or assessment by ethics boards do not address all fieldwork challenges that researchers might encounter. Addressing ethical dilemmas inevitably involves researchers’ own values and judgements, yet, little is known about what and how researchers’ values inform their decisions in practice. This study investigates researchers’ value enactment, drawing on four workshops with 21 participants who conduct user research fieldwork. We identified (1) a collection of values that orient researchers’ practice, extending current understandings of what values operate in design research; and (2) a set of seven questions, each anchored in a declared value that surface recurring tensions in fieldwork. Together, these insights deepen the understanding of ethical decision-making in fieldwork, supporting ethical reflection and value alignment within teams.

Progressive neurological conditions like Amyotrophic Lateral Sclerosis (ALS) require regular and detailed monitoring to track functional decline and support timely clinical decisions. Traditional in-clinic assessments, however, can be burdensome and infrequent, often missing daily symptom variability. Smartphones and wearables offer a promising alternative for remote data collection. We present HomeSenseALS, a smartphone-based digital phenotyping application developed for ALS patients and caregivers, using a user-centered design approach involving patients, caregivers, and clinicians. HomeSenseALS collects multimodal data, including self-reported data from the Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R), speech and respiratory recordings, and human movement passive data. To assess its potential for tracking ALS progression, we conducted a cross-sectional in-clinic study with 27 ALS patients and a longitudinal at-home study with 11 ALS patients over 21 weeks. Self-reported ALSFRS-R scores showed a strong correlation with in-clinic assessments. High-level physical activity features, such as time spent indoors, were associated with gross motor function. Speech analysis differentiated patients with and without bulbar dysfunction and correlated with respiratory parameters. Home spirometry aligned with clinical respiratory measures. These findings support the feasibility of using HomeSenseALS for remote, multimodal monitoring of ALS progression, potentially reducing patient burden while enabling more continuous and granular tracking of functional decline.

Chatbots have the potential to support child health by answering parents doubts and providing tailored information. However, prior work has not studied the deployment of chatbots for this setting. We analysed how parents used the Aurora Facebook Messenger chatbot, designed for Portuguese parents, with an optional subscription to professional support. Our analysis investigated chatbot use, discussed topics, and conversation topics, drawing on user engagement and conversation metrics, text-mining, user satisfaction scores, and conversation content analysis. Results revealed 718 active users (out of 1043), with peak activity during lunchtime and late at night. Most queries pertained to critical situations, including infant sleep (80%), (breast)feeding (13%), or healthcare-related issues (7%). Aurora handled in-domain questions appropriately, but struggled to answer multi-topic queries. Subscription users had 243% more interactions and 162% more extended use of the chatbot. Our research underscores the importance of offering timely and personalised messaging to meet parents’ needs.

Message-based health information dissemination systems can potentially improve maternal and child health (MCH). By conveying health information to parents, SMS- and chatbot-based systems can support parents’ learning and empower them to make better health decisions for their children. However, there is limited design advice for creating message-based dissemination systems for MCH. To help address this gap, we conducted 14 participatory workshops with 42 parents from Portugal and South Africa, exploring how parents learned to care for their children’s health. Our findings showed how parents reflected on the health advice they received, by assessing the fit of the advice to their child’s characteristics, their values and beliefs, the advice’s feasibility, or the intention and competence of the advice giver. Based on these insights, we propose four design implications for creating message-based health information dissemination systems tailored to parents and their children.

Rhythmic Gymnastics is an Olympic sport that demands an exceptional level of expertise. From early age, athletes relentlessly practise exercises until they can flawlessly perform them before an audience and a panel of judges. Technology can potentially support rhythmic gymnasts’ training by monitoring gymnasts’ exercises and providing feedback on their execution. However, the limited understanding of the training nuances in Rhythmic Gymnastics restricts the development of technologies to support training. Drawing on the observation of training sessions and on interviews with athletes and coaches, this paper uncovers how coaches personalise feedback timing, type, form, format, and quantity, to adapt it to the gymnasts’ skill level and type of exercise. Taking stock of our findings, we draw out five implications that can inform the design of systems to support feedback in Rhythmic Gymnastics training.

Rheumatic and Musculoskeletal Diseases (RMDs) are very common and can negatively impact patients' quality of life. The current care of patients with RMDs is episodic, based on a few yearly doctor visits, which may not provide an adequate picture of the patient's condition. Researchers have hypothesized that RMDs could be passively monitored using smartphones or sensors, however, there are no datasets to support this development. We introduce the COTIDIANA Dataset: a holistic, multimodal, multidimensional, and open-access resource that gathers data on mobility and physical activity, finger dexterity, and mental health, key dimensions affected by RMDs. We gathered smartphone and self-reported data from 31 patients and 28 age-matched controls, including inertial sensors, keyboard metrics, communication logs, and reference tests/scales. A preliminary analysis showed the potential for extracted metrics to predict RMD diagnosis and condition characteristics. Our dataset shall enable the community to create mobile and wearable-based solutions for patients with RMDs.

Living with Parkinson’s Disease introduces a range of significant challenges into one’s daily life. While medical interventions exist to overcome some of these challenges, patient self-care techniques often form an essential complement to the treatments recommended by medical doctors. Knowledge on these self-care techniques often originates from those living with Parkinson’s themselves or their close caregivers, as they have the knowledge and experience required to assess self-care techniques. This so-called ‘patient knowledge’ is usually exchanged in peer meetings or discussion forums. Although vital to the Parkinson’s Disease community, this information is often difficult to access due to its unstructured format and the difficulty of navigating through online forums. We present an online tool that allows for contributing, assessing, and finally discovering Parkinson’s Disease self-care techniques. The custom discovery tool was populated with self-care knowledge by over 300 people with Parkinson’s and dozens of their carers, spanning areas such as daily well-being and using assistive equipment. Then, we invited patients to explore the discover features in a smaller scale trial. While well-received, our deployment highlighted several challenges that we further discuss in this paper. Overall, our study contributes to crowdsourced digital health solutions and provides both design and research implications to this challenging domain with a vulnerable user group.

People with food hypersensitivities experience adverse reactions when eating certain foods and thus need to adapt their diet. When dining out, the challenge is greater as people entrust the care of their allergy, intolerance, or celiac disease, in the hands of staff who might not have enough knowledge to appropriately care for them. This interview study explored how people with food hypersensitivities avoid reactions while eating out, to inspire future digital technology design. Our findings show the social and emotional impact of food hypersensitivities and how people practically cope by investigating restaurants’ safety precautions, correcting orders, or even educating restaurants’ staff. We discuss our findings against the experiences of other people living with chronic conditions and offer design opportunities for digital technologies to enhance dining out experiences of people with food hypersensitivities.

Self-care technologies have been influenced by medical values and models. One of the values that was acritically incorporated was that self-care was medicalised, and, as a result, technologies were designed to afford use with clinicians and fit structured medical processes. This paper seeks to broaden the understanding of self-care in HCI, to acknowledge the mundane ways in which self-care is achieved. Drawing on in-depth interviews with patients and carers, and online ethnography of an online community, we describe how the self-care of Parkinson's is mundane. The fieldwork contrasts with more medicalised perspectives on self-care, thus we discuss the properties of a self-care concept that would acknowledge its mundane nature. Our hope is to sensitise designers to identify the mundane ways in which self-care is performed and, consequently, design technologies that better fit the complexities of everyday life with a chronic condition.

Working in shifts can cause great disruption in a person's life, impacting their health, family, and social life. Previous work has raised numerous issues of shift work, but there is little understanding of how workers practically deal with the challenges of shift work. This study investigates how shift workers engage in self-care to avoid health issues and deal with their shifts in practical terms. Findings show that shift workers engage in numerous activities for preparing, managing, and recovering from night shifts. Moreover, we describe the design of a mobile app for shift workers, designed based on the characteristics and self-care practices of shift workers.

Serious games can improve the physical rehabilitation of patients with different conditions. By monitoring exercises and offering feedback, serious games promote the correct execution of exercises outside the clinic. Nevertheless, existing serious games are limited to specific exercises, which reduces their practical impact. This paper describes the design of three exercise-agnostic games, that can be used for a multitude of rehabilitation scenarios. The developed games are displayed on a smartphone and are controlled by a wearable device, containing inertial and electromyography sensors. Results from a preliminary evaluation with 10 users are discussed, together with plans for future work.

The self-management of a chronic condition is a collaborative activity, performed by patients and carers. However, to date, self-care technologies have been mostly designed for individual use. This article uses a case study of people living with Parkinson’s disease to (a) illustrate how patients and carers collaborate in self-management, (b) discuss the reasons why self-care technology is designed for individual use, and (c) explore the implications of recognizing collaborations for the design of self-care technologies. This work is based on a qualitative study with interviews and observations with people living with Parkinson’s. The analysis illustrates how people living with Parkinson’s collaborate in self-care to build a good life. In particular, it exemplifies how the complex interplay of actions and of patients and carers enables the different self-care activities to take place. To further integrate self-care technology in everyday life, designers need to consider collaborations when studying the context, conceptualizing a technology, and planning an evaluation.

Many studies show that self-care technologies can support patients with chronic conditions and their carers in understanding the ill body and increasing control of their condition. However, many of these studies have largely privileged a medical perspective and thus overlooked how patients and carers integrate self-care into their daily lives and mediate their conditions through technology. In this review, we focus on how patients and carers use and experience self-care technology through a Human-Computer Interaction (HCI) lens. We analyse studies of self-care published in key HCI journals and conferences using the Grounded Theory Literature Review (GTLR) method and identify research trends and design tensions. We then draw out opportunities for advancing HCI research in self-care, namely, focusing further on patients' everyday life experience, considering existing collaborations in self-care, and increasing the influence on medical research and practice around self-care technology.