Effective patient-provider communication is critical to promote patient satisfaction, encourage patient involvement in care, and improve health outcomes. Although prior HCI works aim to enhance the dyadic communication by improving patients’ communication skills, little is known about healthcare providers’ communication work to facilitate effective communication with their child patients. Through semi-structured interviews with 10 healthcare providers and clinic observations, our study identified four strategies that providers used in their communication with patients: building rapport, developing familiarity with care settings, respecting patients’ communication modes and preferences, and delegating small decision-making and directing questions to patients. Based on these strategies, we discuss three key elements that providers value and work toward to achieve effective communication in pediatric care practice. Our study also uncovers the detailed process of how the providers develop their strategies to tailor their communication to the patients’ specific needs and preferences, and we describe design opportunities for communication technology.

Previous works have shown that effective communication between parental caregivers and child patients has many benefits to the children, such as providing emotional support and coping skills for health management. Drawing on semi-structured interviews, we have identified the challenges parental caregivers face when communicating with their children about health-related information in daily illness management. Three salient challenges that the parental caregivers encountered include: (i) acknowledging different perceptions and approaches to being a cancer patient, (ii) choosing an appropriate communication method, and (iii) understanding their child's uncommunicated emotions. Based on these challenges, we recognize distinctive, yet implicit, needs that children develop during the illness trajectory, affecting the parent-child dyadic relationship. We discuss design opportunities for a collaborative system that enhances the parent-child dyadic communication by supporting the child's implicit and dynamically changing needs throughout the illness trajectory and beyond.

The diagnosis of cancer brings about significant changes in the life of a child. In addition to physical pain, pediatric patients face psychological and social challenges. At the same time, some patients also have positive experiences with and attitudes toward their illness and treatment. Drawing on 19 semi-structured interviews with pairs of pediatric cancer patients and their parental caregivers, we examined patients' perspectives on their experience of living with cancer. We identified four salient themes in patients' positive experiences: future-oriented thinking, developing strong personal bonds and relationships, gaining knowledge and life experience, and developing self-management and coping skills. Collectively, the patients' positive experiences indicate that they adapt to their new lives through an evolving process. Based on this process, we provide design implications for health technologies to support and promote positive experiences during illness and treatment.

In pediatric chronic care, the treatment process affects not just the child's physical health, but his or her psychosocial and emotional development. As a result, caring for pediatric patients with a chronic illness such as cancer is becoming a daunting task for parental caregivers. They are expected to fulfill the caregiving needs of managing the child's health condition and treatment while also meeting the parenting needs of translating knowledge, communicating about the illness, and making numerous decisions on a daily basis for their sick child due to the child's young age. Drawing on 15 semi-structured interviews, we examined parental caregivers' perspectives on raising a child while also managing the child's health. We identified three tensions that participants encountered as they balanced parenting and caregiving responsibilities: (i) tension between ensuring the child's health and safety and attending to the child's social development, (ii) tension between disclosing health-related information and minimizing the psychological burden on the child, and (iii) tension between rewarding the child's cooperation in treatment and maintaining discipline. Together, these tensions reveal an ongoing process through which caregivers assess and interpret their actions and responsibilities relative to anticipated consequences across multiple time scales. These findings reveal opportunities for sociotechnical systems to account for and support this active process of iterative cycles of assessment.

Independence is a central concern for people in the care of many chronic conditions. It is often viewed as a goal that can be facilitated with the use of patient data. It is also viewed, especially from the medical side, as something an individual achieves. However, in the lived experience, independence is often a set of collaborative practices. In this paper, we unpack findings from an interview-based study of Spinal Cord Injury (SCI) self-care. We found that independence - both functional and in the form of effecting agency - must be co-constructed by the choices and activities of the care network, including the person with disability, caregivers, and clinicians. This collaboratively shaped independence also affects potential collection and use of data in support of self-care. We describe how collaboratively shaped independence informs requirements and constraints for the design of sensor-based networks for self-care in long-term chronic disability.

Patients are often overwhelmed in their efforts to understand their illnesses and determine what actions to take. In this paper, we want to show why care is sometimes not co-managed well between clinicians and patients, and the necessary information is often not well coordinated. Through a 2.5-year field study of an adult bone marrow transplant (BMT) clinic, we show there are different experiences of temporal ordering, or temporalities, between clinicians and patients (and their caregivers). We also show that misalignments between these temporalities can seriously affect the articulation (coordination) and information work that must go on for people to co-manage their conditions with clinicians. As one example, information flows can be misaligned, as a result of differing temporalities, causing sometimes an overwhelming amount of information to be presented and sometimes a lack of properly contextualized information. We also argue that these misalignments in temporalities, important in medicine, are a general coordination problem.

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.'

Transitional points in patient care, such as handoffs and hospital discharges, are known to have unique information challenges. Transitions following long-term care involve even more complex processes. In this study, we examine the informational and contextual issues for patients transitioning from the care of specialists who have come to know them through long-term partnerships to clinicians potentially less familiar with patients’ chronic care concerns. The context is bone marrow transplant (BMT); specifically allogeneic transplants, which involve risk for particular chronic complications and a long-term process that requires close monitoring of patients by BMT specialists for at least a year beyond the actual transplant procedure. Based on a 16-month field study, we examine patient experience and clinician viewpoints regarding the transition of patient responsibility from BMT clinicians to primary care or oncologists, and detail the important issues for patients and clinicians.

This paper explores the relationship between CSCW studies of scientific collaboration and the larger worlds of science practice and policy they are embedded in. We argue that CSCW has much to learn from debates in science policy, including questions around the changing nature of science and science-society relations that are partly but obliquely referenced in technology- or data-centered accounts of scientific change. At the same time, science policy has much to learn from CSCW -- about design, infrastructure, and the organizational complexities of distributed collaborative practice. We conclude with recommendations for a better integration of the CSCW and science policy literatures around collaboration and new infrastructure development in the sciences, and speculation around what a post-normal cyberinfrastructure -- and post-normal CSCW -- might look like.

CSCW studies of large-scale distributed practice in the sciences and elsewhere have taught us important things about space and place as props and barriers to distributed collective action, but they have had relatively less to say about time. This paper develops a heuristic of collaborative rhythms and points to the work of temporal alignment as a neglected but crucial element underpinning distributed collective practice in the sciences (and other spheres of collective activity). Specifically, we argue that joint scientific work is organized around four separate registers, or 'rhythms' - organizational, infrastructural, biographical, and phenomenal - and that efforts to align such rhythms constitute an important and under-recognized aspect of collaborative work. The ideas and examples are drawn from our own field studies around IT infrastructure and collaborative practice across a range of scientific fields.

Previous research on partially distributed teams has revealed a cluster of problems, including difficulty coordinating, 'ingroup' formation among members in different locations, and lower trust in teammates across distance. But these prior studies involved groups of strangers; would pre-existing groups have the same problems? We recruited groups from the same fraternity or sorority to test groups with a pre-existing shared identity. We found that these groups did indeed coordinate work better, cooperated more, and were more willing and able to take on larger scale projects. However, even within these high-performing shared identity groups, there were significant differences between collocated and remote members in performance, group efficacy, and sense of group identity.

For emerging group technologies that require evaluations on long-term use and social norms, assumptions, and implicit rules that develop around the technologies, standard usability testing may not be adequate. At the same time, field based research that allows for observing technology use over long-term is costly in terms of time. In this paper, we present a rapid method that we call progressive scenarios, which could help replicate the processes by which interpretations evolve over time in natural settings and how invisible assumptions and social norms dictate the technology use. Using a preliminary design concept of a publicly available ambient personal information and communication system, we demonstrate how the method helped to elicit design implications.