The overturn of Roe v. Wade radically changed abortion access within the United States leaving women to navigate new financial, legal, and logistical challenges in managing their reproductive health needs. Reporting on findings from co-design workshops with participants from Indiana (a state with an abortion ban) and New York (where abortion is accessible), we investigate how women envision care in response to ongoing legal and medical uncertainty. Drawing together techno-feminist scholarship on care and reproductive health, in this paper we highlight several "entangled" design stories of anxiety and fear in navigating diminished healthcare services, as well as resistance and hope. Our findings prompt critical reflections for HCI on the role of health technology amid a world in which reproductive health, and medicine at large, is often a site of political contestation and conflict. Care-in-Retrograde re-orients a techno-utopian and future-oriented view of health technology to consider design work amid healthcare trajectories of disruption and reversal.

Meals are a central (and messy) part of family life. Previous design framings for mealtime technologies have focused on supporting dietary needs or social and celebratory interactions at the dinner table; however, family meals involve the coordination of many activities and complicated family dynamics. In this paper, we report on findings from interviews and design sessions with 18 families from the Midwestern United States (including both partners/parents and children) to uncover important family differences and tensions that arise around domestic meal experiences. Drawing on feminist theory, we unpack the work of feeding a family as a form of care, drawing attention to the social and emotional complexity of family meals. Critically situating our data within current design narratives, we propose the sensitizing concepts of generative and systemic discontents as a productive way towards troubling the design space of family-food interaction to contend with the struggles that are a part of everyday family meal experiences.

Patient work encompasses a challenging set of activities necessary for learning about and managing chronic conditions over time. Many patient-centered health technology interventions focus on supporting types of patient work, such as symptom tracking, medication adherence, and information sharing between patients and providers. However, people may not always follow, or may actively resist, the activities prescribed by their formal patient role. In this paper, we present three case studies about patients with different chronic conditions to critically reflect on the types of patient behavior commonly taken up in health technology design as acts of "noncompliance." Detailing conflicts that emerge when patients are caught between meeting their personal needs and following clinical best practices, we show how everyday life and health system goals are often misaligned in ways that can't be easily reconciled through current design approaches. As a way forward, we argue for alternative ways of understanding the tensions routinely shaping people's healthcare experiences. We introduce the term care frictions as a sensitizing concept useful for helping designers reframe "noncompliant" behaviors as legitimate forms of patient work. Our paper also offers design considerations-both on challenges and generative possibilities-for future CSCW research seeking to support a wider breadth of patient behavior. In this, we call attention to the value of designer and researcher reflexivity in making visible the problematic assumptions in health technology design that can lead to social and emotional patient harms.

The application of artificial intelligence (AI) to the behavioral health domain has led to a growing interest in the use of machine learning (ML) techniques to identify patterns in people's personal data with the goal of detecting-and even predicting-conditions such as depression, bipolar disorder, and schizophrenia. This paper investigates the data science practices and design narratives that underlie AI-mediated behavioral health through the situational analysis of three natural language processing (NLP) training datasets. Examining datasets as a sociotechnical system inextricably connected to particular social worlds, discourses, and infrastructural arrangements, we identify several misalignments between the technical project of dataset construction and benchmarking (a current focus of AI research in the behavioral health domain) and the social complexity of behavioral health. Our study contributes to a growing critical CSCW literature of AI systems by articulating the sensitizing concept ofdisordering datasets that aims to productively trouble dominant logics of AI/ML applications in behavioral health, and also support researchers and designers in reflecting on their roles and responsibilities working within this emerging and sensitive design space.

In this paper, we present ethnographic account of people's everyday behavioral health experiences in the city of Jackson, Michigan to explore community forms of care work through an infrastructural lens. Detailing people's interactions with clinical processes and health policies, local resources, and diverse social worlds, we highlight problematic healthcare delivery gaps, as well as the informal (and often invisible) practices people depend upon to manage their health needs given socioeconomic hardships and cultural concerns. We also discuss the city's efforts to support local behavioral health needs through the development of a community health record. Placing fieldwork findings in conversation with the goals of this ongoing civic design project, we propose the analytic sensibility of precarious intervention to unpack the significance of the infrastructural tensions and power relations at play when people seek solutions to complex sociotechnical problems. Precarious intervention calls for CSCW research that attends to 1) the collective labor necessary to create and maintain ecologies of care in the face of infrastructural brokenness; and 2) the high-stakes and varied costs of 'engagement' for different community stakeholders.

Human–computer interaction research on personal informatics in health care has focused on systems that aim to support patient empowerment and enable better health outcomes with data monitoring and tracking. Through examining the lived experience of personal data used to manage chronic illness, we show how such technology design is also the site of radical dependencies, collaborative care arrangements, and wider sociopolitical concerns tied to new forms of technical labor and shifts in medical expertise. Drawing from ethnographic research with open source, do-it-yourself collectives engaged in opening up corporate-controlled type 1 diabetes devices and data, we propose the analytical lens of lived data. Lived data emphasize data as an integral way of living, enacted through a multiplicity of things, relations, and practices, from bodies and needles, social media support groups, and legal processes to writing code, making visualizations, and hacking devices. Building on critical and feminist scholarship of human–machine relations, we articulate the work that goes into producing and living personal data, the physical and emotional costs of data tracking, and the consequences of do-it-yourself as a form of individual empowerment in health and wellness.

Designing systems to support the social context of personal data is a topic of importance in CSCW, particularly in the area of health and wellness. The relational complexities and psychological consequences of living with health data, however, are still emerging. Drawing on a 12+ month ethnography and corroborating survey data, we detail the experiences of parents using Nightscout--an open source, DIY system for remotely monitoring blood glucose data-with their children who have type one diabetes. Managing diabetes with Nightscout is a deeply relational and (at times) contested activity for parent-caregivers, whose practices reveal the tensions and vulnerabilities of caregiving work enacted through data. As engagement with personal data becomes an increasingly powerful way people experience life, our findings call for alternative data narratives that reflect a multiplicity of emotional concerns and social arrangements. We propose the analytic lens of caring-through-data as a way forward.

BACKGROUND: Patient-centered care has been shown to improve patient outcomes, satisfaction, and engagement. However, there is a paucity of research on patient-centered care in the inpatient setting, including an understanding of unmet informational needs that may be limiting patient engagement. Pediatric hematopoietic stem cell transplantation (HSCT) represents an ideal patient population for elucidating unmet informational needs, due to the procedure's complexity and its requirement for caregiver involvement. METHODS: We conducted field observations and semi-structured interviews of pediatric HSCT caregivers and patients to identify informational challenges in the inpatient hospital setting. Data were analyzed using a thematic grounded theory approach. RESULTS: Three stages of the caregiving experience that could potentially be supported by a health information technology system, with the goal of enhancing patient/caregiver engagement, were identified: (1) navigating the health system and learning to communicate effectively with the healthcare team, (2) managing daily challenges of caregiving, and (3) transitioning from inpatient care to long-term outpatient management. DISCUSSION: We provide four practical recommendations to meet the informational needs of pediatric HSCT patients and caregivers: (1) provide patients/caregivers with real-time access to electronic health record data, (2) provide information about the clinical trials in which the patient is enrolled, (3) provide information about the patient's care team, and (4) properly prepare patients and caregivers for hospital discharge. CONCLUSION: Pediatric HSCT caregivers and patients have multiple informational needs that could be met with a health information technology system that integrates data from several sources, including electronic health records. Meeting these needs could reduce patients' and caregivers' anxiety surrounding the care process; reduce information asymmetry between caregivers/patients and providers; empower patients/caregivers to participate in the care process; and, ultimately, increase patient/caregiver engagement in the care process.

The impact of health information on caregivers is of increasing interest to HCI/CSCW in designing systems to support the social and emotional dimensions of managing health. Drawing on an interview study, as well as corroborating data including a multi-year ethnography, we detail the practices of caregivers (particularly parents) in a bone marrow transplant (BMT) center. We examine the interconnections between information and emotion work performed by caregivers through a liminal lens, highlighting the BMT experience as a time of transition and reflection in which caregivers must quickly adapt to the new social world of the hospital and learn to manage a wide range of patient needs. The transition from parent to 'caregiver' is challenging, placing additional emotional burdens on the intensive information work for managing BMT. As a time of reflection, the BMT experience also provides an occasion for generative thinking and alternative approaches to health management. Our study findings call for health systems that reflect a design paradigm focused on 'transforming lives' rather than 'transferring information.'

Contemporary cyberinfrastructure (CI) seem poorly developed to meet the distributed work practices of social scientists. We draw from the literatures of science studies and e-science practices to advance a document-centered articulation of social scientists' distributed work practices. We report on a pilot study to provide some insights into CI needs for these scholars. This study relied on a mixed-methodological approach involving the mapping of digital and physical documents, automated tracking of desktop and online repositories, participant-generated images of physical documents and desktop, behavioral queries, along with interviews and participant observation. Findings suggest a document perspective provides insight into the distributed work practices and CI uses of social scientists.