The health information practices of people living with chronic health conditions: Implications for health literacy

Abstract

The health literacy concept is often limited to descriptions of a patient’s functional relationship with text. This description does not acknowledge the range of information sources that people draw from in order to make informed decision about their health and treatment. A socio-cultural understanding of the practice of health literacy and the construction of the health information landscape is described, and draws from two studies of people with two different but complex and life-threatening chronic health conditions: chronic kidney disease and human immunodeficiency virus. Health information is experienced by patients as a chronic health condition landscape, and develops from three information sources, namely epistemic, social and corporeal sources. Participants in both studies used activities that involved orienting and sharing activities to understand the landscape that was used to inform their decision making. These findings challenge the traditional conceptions of health literacy and suggest an approach that views the landscape of chronic illness as being socially, physically and contextually constructed. This suggests recasting health literacy away from a sole interest in skills and towards understanding how information practices facilitate people becoming health literate.