The real-world problem of care coordination: a longitudinal qualitative study with patients living with advanced progressive illness and their unpaid caregivers.
<h4>Objectives</h4>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.<h4>Design</h4>A prospective longitudinal, multi-perspective qualitati...
Saved in:
| Main Authors: | , , , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Public Library of Science (PLoS)
2014-01-01
|
| Series: | PLoS ONE |
| Online Access: | https://doi.org/10.1371/journal.pone.0095523 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850162937701859328 |
|---|---|
| author | Barbara A Daveson Richard Harding Cathy Shipman Bruce L Mason Eleni Epiphaniou Irene J Higginson Clare Ellis-Smith Lesley Henson Dan Munday Veronica Nanton Jeremy R Dale Kirsty Boyd Allison Worth Stephen Barclay Anne Donaldson Scott Murray |
| author_facet | Barbara A Daveson Richard Harding Cathy Shipman Bruce L Mason Eleni Epiphaniou Irene J Higginson Clare Ellis-Smith Lesley Henson Dan Munday Veronica Nanton Jeremy R Dale Kirsty Boyd Allison Worth Stephen Barclay Anne Donaldson Scott Murray |
| author_sort | Barbara A Daveson |
| collection | DOAJ |
| description | <h4>Objectives</h4>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.<h4>Design</h4>A prospective longitudinal, multi-perspective qualitative study involving a case-study approach.<h4>Methods</h4>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.<h4>Participants</h4>Fifty-six purposively sampled patients and 27 case-linked unpaid caregivers.<h4>Settings</h4>Three cases from contrasting primary, secondary and tertiary settings within Britain.<h4>Results</h4>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.<h4>Conclusions</h4>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 | Article |
| id | doaj-art-b46b5dff6a854526899f8855bee9aa47 |
| institution | OA Journals |
| issn | 1932-6203 |
| language | English |
| publishDate | 2014-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj-art-b46b5dff6a854526899f8855bee9aa472025-08-20T02:22:25ZengPublic Library of Science (PLoS)PLoS ONE1932-62032014-01-0195e9552310.1371/journal.pone.0095523The real-world problem of care coordination: a longitudinal qualitative study with patients living with advanced progressive illness and their unpaid caregivers.Barbara A DavesonRichard HardingCathy ShipmanBruce L MasonEleni EpiphaniouIrene J HigginsonClare Ellis-SmithLesley HensonDan MundayVeronica NantonJeremy R DaleKirsty BoydAllison WorthStephen BarclayAnne DonaldsonScott Murray<h4>Objectives</h4>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.<h4>Design</h4>A prospective longitudinal, multi-perspective qualitative study involving a case-study approach.<h4>Methods</h4>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.<h4>Participants</h4>Fifty-six purposively sampled patients and 27 case-linked unpaid caregivers.<h4>Settings</h4>Three cases from contrasting primary, secondary and tertiary settings within Britain.<h4>Results</h4>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.<h4>Conclusions</h4>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.https://doi.org/10.1371/journal.pone.0095523 |
| spellingShingle | Barbara A Daveson Richard Harding Cathy Shipman Bruce L Mason Eleni Epiphaniou Irene J Higginson Clare Ellis-Smith Lesley Henson Dan Munday Veronica Nanton Jeremy R Dale Kirsty Boyd Allison Worth Stephen Barclay Anne Donaldson Scott Murray The real-world problem of care coordination: a longitudinal qualitative study with patients living with advanced progressive illness and their unpaid caregivers. PLoS ONE |
| 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 |
| url | https://doi.org/10.1371/journal.pone.0095523 |
| work_keys_str_mv | AT barbaraadaveson therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT richardharding therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT cathyshipman therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT brucelmason therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT eleniepiphaniou therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT irenejhigginson therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT clareellissmith therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT lesleyhenson therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT danmunday therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT veronicananton therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT jeremyrdale therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT kirstyboyd therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT allisonworth therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT stephenbarclay therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT annedonaldson therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT scottmurray therealworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT barbaraadaveson realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT richardharding realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT cathyshipman realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT brucelmason realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT eleniepiphaniou realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT irenejhigginson realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT clareellissmith realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT lesleyhenson realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT danmunday realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT veronicananton realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT jeremyrdale realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT kirstyboyd realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT allisonworth realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT stephenbarclay realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT annedonaldson realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers AT scottmurray realworldproblemofcarecoordinationalongitudinalqualitativestudywithpatientslivingwithadvancedprogressiveillnessandtheirunpaidcaregivers |