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The Capital Region of Denmark - a part of Copenhagen University Hospital
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Informal work and formal plans: articulating the active role of patients in cancer trajectories

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  1. Instruments to assess integrated care: a systematic review

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  2. Motivation to take part in integrated care – an assessment of follow-up home visits to elderly persons

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  1. Drug-drug interaction between warfarin and statins: A Danish cohort study

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  2. Risk factors of post-discharge under-five mortality among Danish children 1997-2016: A register-based study

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  3. Too much? Mortality and health service utilisation among Danish children 1999-2016: A register-based study

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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.

Original languageEnglish
JournalInternational Journal of Integrated Care
Volume12
Pages (from-to)e230
ISSN1568-4156
Publication statusPublished - Oct 2012

ID: 44461946