TY - JOUR T1 - Issues and opportunities in transitions from speciality care: a field study of bone marrow transplant JF - Behaviour & Information Technology Y1 - 2015 A1 - Ayse G Büyüktür A1 - Mark S. Ackerman KW - chronic illness KW - continuity of care KW - expertise sharing KW - health informatics KW - healthcare KW - medical informatics KW - medical work KW - patient information KW - speciality transition AB -

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.

VL - 34 UR - Complete-OnlyDOI ER - TY - CONF T1 - Transition and Reflection in the Use of Health Information: The Case of Pediatric Bone Marrow Transplant Caregivers T2 - Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW'15) Y1 - 2015 A1 - Elizabeth Kaziunas A1 - Ayse G Büyüktür A1 - Jones, Jasmine A1 - Choi, Sung W A1 - David A Hanauer A1 - Mark S. Ackerman KW - caregiver KW - caregiving KW - emotional work KW - health and wellness KW - health informatics KW - health information KW - healthcare technology KW - interactional work KW - medication informatics KW - patient information KW - patients KW - pediatric KW - reflection KW - reflecton work KW - social worlds KW - work AB -

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.'

JF - Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW'15) PB - ACM UR - Complete ER - TY - CONF T1 - Progressive Scenarios: A Rapid Method for Understanding User Interpretations of Technology T2 - Proceedings of the 16th ACM Conference on Supporting Group Work (GROUP ’10) Y1 - 2010 A1 - Huh, Jina A1 - Mark S. Ackerman A1 - Mark W. Newman A1 - Ayse G Büyüktür KW - ambiguity KW - multiple interpretations KW - pervasive KW - pervasive environments KW - scenario-based design KW - ubicomp KW - usercentered design AB -

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.

JF - Proceedings of the 16th ACM Conference on Supporting Group Work (GROUP ’10) UR - Complete ER -