“Information work” and chronic illness: Interpreting results from a nationwide survey of people living with HIV/AIDS

Abstract

While there is a substantial body of research which describes how the HIV‐positive community seeks and uses information, much of that work fails to consider these activities in relationship to the experience of living with long‐term chronic illnesses. In this paper, we present results from our survey study on the information preferences and practices of the HIV‐positive community. We compare our results to previous findings on the HIV‐positive community and people living with another chronic condition, multiple sclerosis (MS). Applying the chronic illness trajectory model developed by Juliet Corbin and Anselm Strauss, we examine what this body of research tells us about the management of “information work.” We identify the information sources that are most important, the attributes of information that influence its 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 information work in living with chronic illnesses and how information services can be more responsive to the needs of the chronically ill.