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Decision making in the oesophageal cancer trajectory a source of tension and edginess to patients and relatives: a qualitative study

PURPOSE: The curative oesophageal cancer continuum—diagnosis, treatment and survivorship represents different phases with its own challenges for the involved parties. The process of treatment decisions and interactions between patients with oesophageal cancer (EC), relatives and health professionals...

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Autores principales: Larsen, Malene Kaas, Schultz, Helen, Mortensen, Michael Bau, Birkelund, Regner
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Taylor & Francis 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9897738/
https://www.ncbi.nlm.nih.gov/pubmed/36727528
http://dx.doi.org/10.1080/17482631.2023.2170018
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author Larsen, Malene Kaas
Schultz, Helen
Mortensen, Michael Bau
Birkelund, Regner
author_facet Larsen, Malene Kaas
Schultz, Helen
Mortensen, Michael Bau
Birkelund, Regner
author_sort Larsen, Malene Kaas
collection PubMed
description PURPOSE: The curative oesophageal cancer continuum—diagnosis, treatment and survivorship represents different phases with its own challenges for the involved parties. The process of treatment decisions and interactions between patients with oesophageal cancer (EC), relatives and health professionals is vital yet not well described. The purpose of the study was to explore patients’ and relatives’ experiences with the process of decision-making through the EC illness and treatment trajectory. METHODS: Longitudinal explorative design was employed based on ethnographic fieldwork in the form of participant observations inspired by the American anthropologist James Spradley. RESULTS: Sixteen patients and 18 relatives were recruited for participant observations. In total, 184 hours of participant observations were conducted. The study showed that decision-making was filled with tension and edginess. Four themes were identified: 1) The encounter with the medical authority, 2) The need to see the big picture in the treatment trajectory, 3) A predetermined treatment decision, and 4) Meeting numerous different health professionals. CONCLUSION: The EC trajectory and decision-making were filled with anxiety. Patients and relatives lacked an overview of the treatment pathway, leading to their role in decision-making often being governed by the medical authority. Timing information and continuity are vital factors in decision-making.
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spelling pubmed-98977382023-02-04 Decision making in the oesophageal cancer trajectory a source of tension and edginess to patients and relatives: a qualitative study Larsen, Malene Kaas Schultz, Helen Mortensen, Michael Bau Birkelund, Regner Int J Qual Stud Health Well-being Empirical Studies PURPOSE: The curative oesophageal cancer continuum—diagnosis, treatment and survivorship represents different phases with its own challenges for the involved parties. The process of treatment decisions and interactions between patients with oesophageal cancer (EC), relatives and health professionals is vital yet not well described. The purpose of the study was to explore patients’ and relatives’ experiences with the process of decision-making through the EC illness and treatment trajectory. METHODS: Longitudinal explorative design was employed based on ethnographic fieldwork in the form of participant observations inspired by the American anthropologist James Spradley. RESULTS: Sixteen patients and 18 relatives were recruited for participant observations. In total, 184 hours of participant observations were conducted. The study showed that decision-making was filled with tension and edginess. Four themes were identified: 1) The encounter with the medical authority, 2) The need to see the big picture in the treatment trajectory, 3) A predetermined treatment decision, and 4) Meeting numerous different health professionals. CONCLUSION: The EC trajectory and decision-making were filled with anxiety. Patients and relatives lacked an overview of the treatment pathway, leading to their role in decision-making often being governed by the medical authority. Timing information and continuity are vital factors in decision-making. Taylor & Francis 2023-02-02 /pmc/articles/PMC9897738/ /pubmed/36727528 http://dx.doi.org/10.1080/17482631.2023.2170018 Text en © 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Empirical Studies
Larsen, Malene Kaas
Schultz, Helen
Mortensen, Michael Bau
Birkelund, Regner
Decision making in the oesophageal cancer trajectory a source of tension and edginess to patients and relatives: a qualitative study
title Decision making in the oesophageal cancer trajectory a source of tension and edginess to patients and relatives: a qualitative study
title_full Decision making in the oesophageal cancer trajectory a source of tension and edginess to patients and relatives: a qualitative study
title_fullStr Decision making in the oesophageal cancer trajectory a source of tension and edginess to patients and relatives: a qualitative study
title_full_unstemmed Decision making in the oesophageal cancer trajectory a source of tension and edginess to patients and relatives: a qualitative study
title_short Decision making in the oesophageal cancer trajectory a source of tension and edginess to patients and relatives: a qualitative study
title_sort decision making in the oesophageal cancer trajectory a source of tension and edginess to patients and relatives: a qualitative study
topic Empirical Studies
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9897738/
https://www.ncbi.nlm.nih.gov/pubmed/36727528
http://dx.doi.org/10.1080/17482631.2023.2170018
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