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 language | English (US) |
|---|---|
| Title of host publication | CHI 2019 - Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems |
| Publisher | Association for Computing Machinery |
| ISBN (Electronic) | 9781450359702 |
| DOIs | |
| State | Published - May 2 2019 |
| Event | 2019 CHI Conference on Human Factors in Computing Systems, CHI 2019 - Glasgow, United Kingdom Duration: May 4 2019 → May 9 2019 |
Publication series
| Name | Conference on Human Factors in Computing Systems - Proceedings |
|---|
Conference
| Conference | 2019 CHI Conference on Human Factors in Computing Systems, CHI 2019 |
|---|---|
| Country | United Kingdom |
| City | Glasgow |
| Period | 5/4/19 → 5/9/19 |
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Keywords
- Chronic kidney disease
- Information journey
- Information work
- Meaning making
- Patient self-management
- Sensemaking
ASJC Scopus subject areas
- Human-Computer Interaction
- Computer Graphics and Computer-Aided Design
- Software
Cite this
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“Tricky to get your head around” : Information work of people managing chronic kidney disease in the UK. / Burgess, Eleanor R.; Reddy, Madhu; Davenport, Andrew; Laboi, Paul; Blandford, Ann.
CHI 2019 - Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. Association for Computing Machinery, 2019. (Conference on Human Factors in Computing Systems - Proceedings).Research output: Chapter in Book/Report/Conference proceeding › Conference contribution
TY - GEN
T1 - “Tricky to get your head around”
T2 - Information work of people managing chronic kidney disease in the UK
AU - Burgess, Eleanor R.
AU - Reddy, Madhu
AU - Davenport, Andrew
AU - Laboi, Paul
AU - Blandford, Ann
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
ER -