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“Information Work” and Chronic Illness: Interpreting Results from a Nationwide Survey of People Living with HIV/AIDS

Timothy P. Hogan and Carole L. Palmer

Sparking Synergies: Bringing Research and Practice Together @ ASIST '05 (ASIS&T 2005)
Westin Charlotte, Charlotte, North Carolina, October 28 - November 2, 2005


Information has long played an important role in the lives of people confronted with chronic illness, its associated problems, and challenges. Over the last two decades, HIV/AIDS has shifted from being considered an acute disease to being understood as a chronic condition. However, much of the research on how the HIV-positive community seeks and uses information fails to consider these activities within the context of the experiences of people living with long-term chronic illness. In this paper, we present results from a nation-wide survey of the information preferences and practices of the increasingly diverse HIV-positive community and compare these results to related studies on HIV/AIDS and multiple sclerosis. Applying the trajectory model developed by Juliet Corbin and Anselm Strauss for understanding the management of chronic illness, we examine what this body of research tells us about “information work”, the actual labor of locating, gathering, sorting, interpreting, and assimilating information. Through this comparative analysis, we identify the information sources that are most important, the attributes of information that influence use, and the tensions inherent in managing information in the day-to-day lives of the chronically ill. By extending Corbin and Strauss’s model to the aspects of information emphasized across studies, we begin to articulate the fundamental nature of these activities in living with chronic illness and how information services can be more responsive to the needs of the chronically ill.

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