TY - GEN
T1 - “Tricky to get your head around”
T2 - 2019 CHI Conference on Human Factors in Computing Systems, CHI 2019
AU - Burgess, Eleanor R.
AU - Reddy, Madhu C.
AU - Davenport, Andrew
AU - Laboi, Paul
AU - Blandford, Ann
N1 - Publisher Copyright:
© 2019 Copyright is held by the owner/author(s).
PY - 2019/5/2
Y1 - 2019/5/2
N2 - 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.
AB - 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.
KW - Chronic kidney disease
KW - Information journey
KW - Information work
KW - Meaning making
KW - Patient self-management
KW - Sensemaking
UR - http://www.scopus.com/inward/record.url?scp=85067595334&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85067595334&partnerID=8YFLogxK
U2 - 10.1145/3290605.3300895
DO - 10.1145/3290605.3300895
M3 - Conference contribution
AN - SCOPUS:85067595334
T3 - Conference on Human Factors in Computing Systems - Proceedings
BT - CHI 2019 - Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems
PB - Association for Computing Machinery
Y2 - 4 May 2019 through 9 May 2019
ER -
