“Tricky to get your head around”: Information work of people managing chronic kidney disease in the UK

People diagnosed with a chronic health condition have many information needs which healthcare providers, patient groups, and resource designers seek to support. However, as a disease progresses, knowing when, how, and for what purposes patients want to interact with and construct personal meaning from health-related information is still unclear. This paper presents findings regarding the information work of chronic kidney disease patients. We conducted semi-structured interviews with 13 patients and 6 clinicians, and observations at 9 patient group events. We used the stages of the information journey – recognizing need, seeking, interpreting, and using information – to frame our data analysis. We identified two distinct but often overlapping information work phases, ‘Learning’ and ‘Living With’ a chronic condition to show how patient information work activities shift over time. We also describe social and individual factors influencing information work, and discuss technology design opportunities including customized education and collaboration tools.