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

Eleanor R. Burgess, Madhu C. Reddy, Andrew Davenport, Paul Laboi, Ann Blandford

Research output: Chapter in Book/Report/Conference proceedingConference contribution

5 Scopus citations

Abstract

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.

Original languageEnglish (US)
Title of host publicationCHI 2019 - Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems
PublisherAssociation for Computing Machinery
ISBN (Electronic)9781450359702
DOIs
StatePublished - May 2 2019
Event2019 CHI Conference on Human Factors in Computing Systems, CHI 2019 - Glasgow, United Kingdom
Duration: May 4 2019May 9 2019

Publication series

NameConference on Human Factors in Computing Systems - Proceedings

Conference

Conference2019 CHI Conference on Human Factors in Computing Systems, CHI 2019
CountryUnited Kingdom
CityGlasgow
Period5/4/195/9/19

Keywords

  • Chronic kidney disease
  • Information journey
  • Information work
  • Meaning making
  • Patient self-management
  • Sensemaking

ASJC Scopus subject areas

  • Software
  • Human-Computer Interaction
  • Computer Graphics and Computer-Aided Design

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