Caring Through Data: Attending to the Social and Emotional Experiences of Health Datafication
|Title||Caring Through Data: Attending to the Social and Emotional Experiences of Health Datafication|
|Publication Type||Conference Paper|
|Year of Publication||2017|
|Authors||Kaziunas, E, Ackerman, MS, Lindtner, S, Lee, JM|
|Conference Name||Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing (CSCW'17)|
|Keywords||caregiving, chronic illness management, data work, diabetes, diy health, emotion work, health, health and wellness, health informatics, healthcare technology, personal data, personal health informatics, remote monitoring, self-tracking|
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.