TY - CONF T1 - Caring Through Data: Attending to the Social and Emotional Experiences of Health Datafication T2 - Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW'17) Y1 - 2017 A1 - Kaziunas, Elizabeth A1 - Ackerman, Mark S. A1 - Lindtner, Silvia A1 - Lee, Joyce M. KW - caregiving KW - chronic illness management KW - data work KW - diabetes KW - diy health KW - emotion work KW - health KW - health and wellness KW - health informatics KW - healthcare technology KW - personal data KW - personal health informatics KW - remote monitoring KW - self-tracking AB -

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.

JF - Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW'17) UR - Complete 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 -