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Reading: Informal work and formal plans: articulating the active role of patients in cancer trajectories

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Research & theory

Informal work and formal plans: articulating the active role of patients in cancer trajectories

Authors:

Rikke Juul Dalsted ,

DK
About Rikke

RN, Ms Sociology, PhD, The Research Unit for General Practice and Section of General Practice, Department of Public Health, University of Copenhagen, Copenhagen, Denmark

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Marius Brostrøm Kousgaard,

About Marius

Senior Researcher, Ms Political Science, PhD, The Research Unit for General Practice and Section of General Practice, Department of Public Health, University of Copenhagen, Denmark

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John Sahl Andersen,

About John

MD, Associate Professor, Section of General Practice and Research Unit for General Practice, Department of Public Health, University of Copenhagen, Copenhagen, Denmark

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Bibi Hølge-Hazelton

About Bibi
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Abstract

Introduction: Formal pathways models outline that patients should receive information in order to experience a coherent journey but do not describe an active role for patients or their relatives. The aim of this is paper is to articulate and discuss the active role of patients during their cancer trajectories.  

Methods and theory: An in-depth case study of patient trajectories at a Danish hospital and surrounding municipality using individual interviews with patients. Theory about trajectory and work by Strauss was included.  

Results: Patients continuously took initiatives to organize their treatment and care. They initiated processes in the trajectories, and acquired information, which they used to form their trajectories.  Patients presented problems to the healthcare professionals in order to get proper help when needed.  

Discussion: Work done by patients was invisible and not perceived as work. The patients' requests were not sufficiently supported in the professional organisation of work or formal planning. Patients' insertion and use of information in their trajectories challenged professional views and working processes. And the design of the formal pathway models limits the patients´ active participation. When looking at integrated care from the perspective of patients, the development of a more holistic and personalized approach is needed.

How to Cite: Dalsted RJ, Kousgaard MB, Andersen JS, Hølge-Hazelton B. Informal work and formal plans: articulating the active role of patients in cancer trajectories. International Journal of Integrated Care. 2012;12(8):None. DOI: http://doi.org/10.5334/ijic.822
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Published on 19 Dec 2012.
Peer Reviewed

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