The ENABLE study protocol: Understanding and characterising the value and role of self‐management support for people living with cancer that is treatable but not curable
The ENABLE study protocol: Understanding and characterising the value and role of self‐management support for people living with cancer that is treatable but not curable
Objective
Attention is turning to the needs of people living with treatable but incurable cancer, a group with complex needs, living with uncertainty over time. More research is needed to understand how this group self‐manage the impact of cancer to strengthen the evidence base for interventions. This study aims to understand the value and outcomes of self‐management support for people living with treatable but incurable cancer.
Methods
Qualitative longitudinal methods will examine how support needs change over time in relation to self‐management and unpredictable disease trajectories. Thirty patients and 30 carers will be recruited from two hospitals, each participating in three interviews over 1 year. Patients will be purposively sampled according to age, gender, cancer type and anticipated survival. Carers will be recruited via nomination by patients but interviewed separately. One‐off interviews will be conducted with 20 healthcare professionals, providing data from multiple perspectives. Based on interview findings, a modified Delphi process will map areas of consensus and disparity regarding conceptualisations and outcomes of self‐management support.
Conclusion
The key output will be practice recommendations in relation to self‐management support, producing evidence to inform service innovation for those living with treatable but incurable cancer.
Delphi, consensus, incurable cancer, longitudinal, qualitative, self-management, self-management support
Calman, Lynn
9ae254eb-74a7-4906-9eb4-62ad99f058c1
Radcliffe, Eloise
4bbec31f-dadd-4b7d-95c4-7d96a5ec8659
Berman, Richard
aeb9631d-c99f-4a40-900f-15669a19870a
Demain, Sara
f4110e7c-223d-4b1e-b5f4-4024fdbc8a37
Restorick‐banks, Susan
1815bd50-8d69-4713-9aea-daaa8bf53bb3
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Wagland, Richard
16a44dcc-29cd-4797-9af2-41ef87f64d08
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
March 2020
Calman, Lynn
9ae254eb-74a7-4906-9eb4-62ad99f058c1
Radcliffe, Eloise
4bbec31f-dadd-4b7d-95c4-7d96a5ec8659
Berman, Richard
aeb9631d-c99f-4a40-900f-15669a19870a
Demain, Sara
f4110e7c-223d-4b1e-b5f4-4024fdbc8a37
Restorick‐banks, Susan
1815bd50-8d69-4713-9aea-daaa8bf53bb3
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Wagland, Richard
16a44dcc-29cd-4797-9af2-41ef87f64d08
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
Calman, Lynn, Radcliffe, Eloise, Berman, Richard, Demain, Sara, Restorick‐banks, Susan, Richardson, Alison, Wagland, Richard and Foster, Claire
(2020)
The ENABLE study protocol: Understanding and characterising the value and role of self‐management support for people living with cancer that is treatable but not curable.
European Journal of Cancer Care, 29 (2), [e13217].
(doi:10.1111/ecc.13217).
Abstract
Objective
Attention is turning to the needs of people living with treatable but incurable cancer, a group with complex needs, living with uncertainty over time. More research is needed to understand how this group self‐manage the impact of cancer to strengthen the evidence base for interventions. This study aims to understand the value and outcomes of self‐management support for people living with treatable but incurable cancer.
Methods
Qualitative longitudinal methods will examine how support needs change over time in relation to self‐management and unpredictable disease trajectories. Thirty patients and 30 carers will be recruited from two hospitals, each participating in three interviews over 1 year. Patients will be purposively sampled according to age, gender, cancer type and anticipated survival. Carers will be recruited via nomination by patients but interviewed separately. One‐off interviews will be conducted with 20 healthcare professionals, providing data from multiple perspectives. Based on interview findings, a modified Delphi process will map areas of consensus and disparity regarding conceptualisations and outcomes of self‐management support.
Conclusion
The key output will be practice recommendations in relation to self‐management support, producing evidence to inform service innovation for those living with treatable but incurable cancer.
Text
V4 ENABLE protocol paper and abstract Supported self-management CLEAN
- Accepted Manuscript
Text
Calman_et_al-2020-European_Journal_of_Cancer_Care
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More information
Accepted/In Press date: 10 December 2019
e-pub ahead of print date: 20 January 2020
Published date: March 2020
Additional Information:
Funding Information:
This study has been funded by Macmillan Cancer Support. Professor Alison Richardson is a National Institute for Health Research (NIHR) Senior Investigator. The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
Publisher Copyright:
© 2020 John Wiley & Sons Ltd
Keywords:
Delphi, consensus, incurable cancer, longitudinal, qualitative, self-management, self-management support
Identifiers
Local EPrints ID: 437639
URI: http://eprints.soton.ac.uk/id/eprint/437639
ISSN: 0961-5423
PURE UUID: 293f2459-3ebd-4956-878f-1bc407090edb
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Date deposited: 07 Feb 2020 17:32
Last modified: 17 Mar 2024 05:16
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Contributors
Author:
Richard Berman
Author:
Sara Demain
Author:
Susan Restorick‐banks
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