TY - CHAP T1 - Designing for Lived Health: A Practice-Based Approach for Person-Centered Health Information Technologies T2 - Designing Socially Embedded Technologies in the Real-World Y1 - 2015 A1 - Elizabeth Kaziunas A1 - Mark S. Ackerman JF - Designing Socially Embedded Technologies in the Real-World PB - Springer UR - MISSING_URL_ABSTRACT_KEYWORDS 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 - Localizing Chronic Disease Management: Information Work and Health Translations T2 - Association for Information Science and Technology (ASIS&T) Annual Meeting Y1 - 2013 A1 - Elizabeth Kaziunas A1 - Mark S. Ackerman A1 - Veinot, Tiffany C.E. KW - community health KW - health informatics KW - health information KW - health translations KW - information access AB -

Based on interviews with people who had diabetes, high blood pressure, and kidney disease in Flint, Michigan, we found people actively doing information work to manage their health in the face of poverty, potentially violent conditions, high stress, and a distrust of institutionalized medicine. More specifically, we observed people translating information into the context of their everyday lives. We present various translations of health information in the form of local strategies for chronic illness management. Study findings highlight initial implications to support health information services on a community level.

JF - Association for Information Science and Technology (ASIS&T) Annual Meeting UR - Complete ER -