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The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers
OBJECTIVES: To develop a model of care coordination for patients living with advanced progressive illness and their unpaid caregivers, and to understand their perspective regarding care coordination. DESIGN: A prospective longitudinal, multi-perspective qualitative study involving a case-study appro...
Autores principales: | , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Public Library of Science
2014
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4008426/ https://www.ncbi.nlm.nih.gov/pubmed/24788451 http://dx.doi.org/10.1371/journal.pone.0095523 |
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author | Daveson, Barbara A. Harding, Richard Shipman, Cathy Mason, Bruce L. Epiphaniou, Eleni Higginson, Irene J. Ellis-Smith, Clare Henson, Lesley Munday, Dan Nanton, Veronica Dale, Jeremy R. Boyd, Kirsty Worth, Allison Barclay, Stephen Donaldson, Anne Murray, Scott |
author_facet | Daveson, Barbara A. Harding, Richard Shipman, Cathy Mason, Bruce L. Epiphaniou, Eleni Higginson, Irene J. Ellis-Smith, Clare Henson, Lesley Munday, Dan Nanton, Veronica Dale, Jeremy R. Boyd, Kirsty Worth, Allison Barclay, Stephen Donaldson, Anne Murray, Scott |
author_sort | Daveson, Barbara A. |
collection | PubMed |
description | OBJECTIVES: To develop a model of care coordination for patients living with advanced progressive illness and their unpaid caregivers, and to understand their perspective regarding care coordination. DESIGN: A prospective longitudinal, multi-perspective qualitative study involving a case-study approach. METHODS: Serial in-depth interviews were conducted, transcribed verbatim and then analyzed through open and axial coding in order to construct categories for three cases (sites). This was followed by continued thematic analysis to identify underlying conceptual coherence across all cases in order to produce one coherent care coordination model. PARTICIPANTS: Fifty-six purposively sampled patients and 27 case-linked unpaid caregivers. SETTINGS: Three cases from contrasting primary, secondary and tertiary settings within Britain. RESULTS: Coordination is a deliberate cross-cutting action that involves high-quality, caring and well-informed staff, patients and unpaid caregivers who must work in partnership together across health and social care settings. For coordination to occur, it must be adequately resourced with efficient systems and services that communicate. Patients and unpaid caregivers contribute substantially to the coordination of their care, which is sometimes volunteered at a personal cost to them. Coordination is facilitated through flexible and patient-centered care, characterized by accurate and timely information communicated in a way that considers patients’ and caregivers’ needs, preferences, circumstances and abilities. CONCLUSIONS: Within the midst of advanced progressive illness, coordination is a shared and complex intervention involving relational, structural and information components. Our study is one of the first to extensively examine patients’ and caregivers’ views about coordination, thus aiding conceptual fidelity. These findings can be used to help avoid oversimplifying a real-world problem, such as care coordination. Avoiding oversimplification can help with the development, evaluation and implementation of real-world coordination interventions for patients and their unpaid caregivers in the future. |
format | Online Article Text |
id | pubmed-4008426 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2014 |
publisher | Public Library of Science |
record_format | MEDLINE/PubMed |
spelling | pubmed-40084262014-05-09 The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers Daveson, Barbara A. Harding, Richard Shipman, Cathy Mason, Bruce L. Epiphaniou, Eleni Higginson, Irene J. Ellis-Smith, Clare Henson, Lesley Munday, Dan Nanton, Veronica Dale, Jeremy R. Boyd, Kirsty Worth, Allison Barclay, Stephen Donaldson, Anne Murray, Scott PLoS One Research Article OBJECTIVES: To develop a model of care coordination for patients living with advanced progressive illness and their unpaid caregivers, and to understand their perspective regarding care coordination. DESIGN: A prospective longitudinal, multi-perspective qualitative study involving a case-study approach. METHODS: Serial in-depth interviews were conducted, transcribed verbatim and then analyzed through open and axial coding in order to construct categories for three cases (sites). This was followed by continued thematic analysis to identify underlying conceptual coherence across all cases in order to produce one coherent care coordination model. PARTICIPANTS: Fifty-six purposively sampled patients and 27 case-linked unpaid caregivers. SETTINGS: Three cases from contrasting primary, secondary and tertiary settings within Britain. RESULTS: Coordination is a deliberate cross-cutting action that involves high-quality, caring and well-informed staff, patients and unpaid caregivers who must work in partnership together across health and social care settings. For coordination to occur, it must be adequately resourced with efficient systems and services that communicate. Patients and unpaid caregivers contribute substantially to the coordination of their care, which is sometimes volunteered at a personal cost to them. Coordination is facilitated through flexible and patient-centered care, characterized by accurate and timely information communicated in a way that considers patients’ and caregivers’ needs, preferences, circumstances and abilities. CONCLUSIONS: Within the midst of advanced progressive illness, coordination is a shared and complex intervention involving relational, structural and information components. Our study is one of the first to extensively examine patients’ and caregivers’ views about coordination, thus aiding conceptual fidelity. These findings can be used to help avoid oversimplifying a real-world problem, such as care coordination. Avoiding oversimplification can help with the development, evaluation and implementation of real-world coordination interventions for patients and their unpaid caregivers in the future. Public Library of Science 2014-05-02 /pmc/articles/PMC4008426/ /pubmed/24788451 http://dx.doi.org/10.1371/journal.pone.0095523 Text en © 2014 Daveson et al http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are properly credited. |
spellingShingle | Research Article Daveson, Barbara A. Harding, Richard Shipman, Cathy Mason, Bruce L. Epiphaniou, Eleni Higginson, Irene J. Ellis-Smith, Clare Henson, Lesley Munday, Dan Nanton, Veronica Dale, Jeremy R. Boyd, Kirsty Worth, Allison Barclay, Stephen Donaldson, Anne Murray, Scott The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers |
title | The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers |
title_full | The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers |
title_fullStr | The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers |
title_full_unstemmed | The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers |
title_short | The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers |
title_sort | real-world problem of care coordination: a longitudinal qualitative study with patients living with advanced progressive illness and their unpaid caregivers |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4008426/ https://www.ncbi.nlm.nih.gov/pubmed/24788451 http://dx.doi.org/10.1371/journal.pone.0095523 |
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