A conceptual model of online information behavior in the chronic disease trajectory

Abstract

Online resources have become an important source of health information for many people managing a chronic disease over a long period of time. The rapid growth of the Web makes readily available information from health organizations and peer-produced content from other patients. The primary objective of this study is to investigate and model changing online information behaviors, as the patient searches and learns over time, in the chronic disease trajectory. Thirty participants with Type I or Type II diabetes were recruited for the study. Data was collected in semi-structured interview sessions where participants reported events or incidents in the past that led them to look online for diabetes related information. A model of online information behavior in the chronic disease trajectory, as the patient gains ability over time, was developed inductively from the data. Emerging information behaviors have a considerable influence on our participants' self-management practices. Our model characterizes online health information behaviors in three stages. First, a Diagnosis with the Disease, stage where participants use online health resources to help understand the disease and adjust to its impact. Second, a Forming of Ability stage, where participants start to feel empowered and begin developing information behaviors that support their unique experiences. In the final stage, Established Ability, participants primarily seek to access personally relevant information and stay up to date with news related to their condition. The theme of emerging abilities arose from our analysis and led to the development of our model. Long-term online information behaviors are described in three successive stages, where the searcher attempts to achieve a measure of ability and expertise in an unfamiliar yet critically important domain. The emergence of advanced online information behaviors, from a state of low ability near the time of diagnosis, towards one of high ability after substantial experience using online resources, are explored.%%%%Ph.D., Information Studies – Drexel University, 2014