AM08 2008 START Conference Manager    

Information Work in the Chronic Illness Experience

Maria Souden

ASIS&T 2008 Annual Meeting (AM08 2008)
Columbus, Ohio, October 24-29, 2008


A proliferation of health information on the Internet and increased pressures for individuals to manage their own healthcare have raised health information behavior as an area of concern for practitioners and researchers. The experience of chronic illness presents a unique and vivid case of health information behavior in that it involves conditions that: can be difficult to diagnose; are often treated through a combination of traditional medical and alternative therapies; and, engage the patient in active management and care over an extended period. This research incorporates contextualist perspectives from the fields of information behavior and medical sociology to characterize information behavior in the context of chronic illness and to make a claim for distinctive aspects of the chronic illness experience that shape information needs, seeking and use. A preliminary analysis of data collected from fifteen interviews with people experiencing chronic health conditions reveals that information work in this context plays an essential role in handling its force of impact and seeming intractability, and is shaped by the reality of ongoing coping with a complex and messy problem on a daily basis. Participants described an ongoing process of assembling an understanding of what was happening with their bodies that helped them to repair disconnects in their experience and contextualize the illness into their lives. For the chronic illness sufferer, these processes are highly constructivist and affectively motivated, characterized by a need for making meaning in ways that may be completely unaccounted for in an acute care medical model of information provision. This research ultimately strives to contribute a more theory driven understanding of chronic illness information behavior that can help information professionals and medical caregivers better understand the world of the chronic illness sufferer and provide information that is more meaningful, useful and effective in that context.

START Conference Manager (V2.54.6)