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Patient work in end-stage heart failure: a prospective longitudinal multiple case study
D L Willems1, A Hak, F C Visser
1Department of General Practice, Academic Medical Centre/University of Amsterdam, The Netherlands. d.l.willems@amc.uva.nl
Objective:
The most recent WHO definition of palliative care regards living as actively as possible as an important aim. We explored, over a 1-year period, the work this involves for patients with end-stage heart failure.
Design:
Prospective longitudinal multiple case study using qualitative interview techniques.
Participants:
Thirty-one respondents from two hospitals who fulfilled one or more of the following criteria: NYHA III or IV, ejection fraction <25%, at least one hospitalization for heart failure.
Main Outcomes:
Types and content of patient work involved in living with end-stage heart failure.
Results:
For patients with advanced heart failure, work consisted mainly of four types of tasks, as identified by Glaser and Strauss: 'managing illness', 'everyday work to keep life going', 'biographical work' and 'arrangement work'.
Conclusions:
Systematic attention to patient work, for example using these four categories, could improve the quality of care from the patient's perspective.
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