Partners in Care

Abstract

Informal caregivers, such as close friends and family, play an important role in a hospital patient’s care. Although CSCW researchers have shown the potential for social computing technologies to help patients and their caregivers manage chronic conditions and support health behavior change, few studies focus on caregivers’ role during a multi-day hospital stay. To explore this space, we conducted an interview and observation study of patients and caregivers in the inpatient setting. In this paper, we describe how caregivers and patients coordinate and collaborate to manage patients’ care and wellbeing during a hospital stay. We define and describe five roles caregivers adopt: companion, assistant, representative, navigator, and planner, and show how patients and caregivers negotiate these roles and responsibilities throughout a hospital stay. Finally, we identify key design considerations for technology to support patients and caregivers during a hospital stay.

Recognising the importance of informal communication events in improving collaborative care

“…Healthcare providers should tailor information to patients and caregivers to invite active engagement and meaningful discussion. Recognising the many different roles caregivers play in patients’ care during a hospital stay13 may be useful to gain a more holistic picture and support more effective patient and family-centred care. This has been echoed by others14 26–28 in the interprofessional and health services literature as an area worth further exploration.…”

“…The system continues to function not because of its effectiveness and efficiency, but because of the measures people take to overcome problems and limitations in the system. Caregiving in the inpatient environment is an inherently cooperative activity13; therefore, solutions need to move beyond education and training towards system reconfiguration. There is a growing literature base around the concept of systems resilience31 which could be a valuable resource to explore how patient safety at the micro level (eg, ward level) and macro level (organisation-wide) can be enhanced.…”

“…Informal communication has also been noted at times to have an ‘occurring by chance’ nature—as opposed to one professional seeking the other out (eg, paging the resident) or taking the opportunity to talk just prior to or following a scheduled formal communication event 9 10 13. These events have long been identified as a valuable and important part of medical practice,13 yet little is known about the nature of these encounters as compared with other informal, but clearly sought for communication events. More specifically, how do they arise and in what ways do they contribute to enhancing patient safety and quality care?…”

Identifying Opportunities to Support Family Caregiving in Chile

“…While a broad amount of research in this topic has been conducted in medical scenarios (e.g., [8,9]), there are open challenges concerning the design and usage of technology for supporting such a process in family settings.…”

Supporting Families in Reviewing and Communicating about Radiology Imaging Studies

“…While most HCI research emphasizes the need to support patient education in the clinic, Unruh et al [34] and later, Miller et al [22] found through their clinical field work that support for patient information spaces and shared patient-clinician interactions with medical information is lacking, yet critical to the clinical work of both patients and family members. One system demonstrating how shared patient-clinician interaction with medical data might be realized is AnatOnMe, a handheld, projection-based prototype system designed to allow doctors to project selected medical images, such as x-rays, directly onto the patient's body [23].…”