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EXPERTS 1 - experiences of long-term life-limiting conditions among patients and carers: protocol for a qualitative meta-synthesis and conceptual modelling study

EXPERTS 1 - experiences of long-term life-limiting conditions among patients and carers: protocol for a qualitative meta-synthesis and conceptual modelling study
EXPERTS 1 - experiences of long-term life-limiting conditions among patients and carers: protocol for a qualitative meta-synthesis and conceptual modelling study

Introduction Increasing numbers of the population are living with long-term life-limiting conditions with a significant proportion characterised by multimorbidity. Patients with these conditions often experience high volumes of clinical interaction involving them, their caregivers and healthcare providers in complex patterns of organising, coordinating, negotiating and managing care. A better understanding of the sources of experienced complexity and multimorbidity, from the patient perspective is paramount to improve capacity and manage workload to promote improved experience of illness, more effective healthcare utilisation and improved healthcare outcomes. To better understand the sources of complexity we will undertake an evidence synthesis of qualitative studies of patient and informal carer experiences of three common long-term life-limiting conditions. We will investigate what is known about these diseases at different stages in disease progression, treatment regimens and places of care.


Method and analysis We will include qualitative studies of patients’ and carers’ (aged >18) accounts of their experiences of healthcare provision in a range of settings and healthcare systems. We will conduct an extensive electronic database search of publications in English between 2000 and 2014. Results and discussions sections of the papers will be regarded as formal data using the constant comparison method of qualitative analysis. From the meta-synthesis results, we will build a conceptual model of mechanisms and processes that shape patients’ journeys towards end of life to suggest where in the patient journey new interventions to improve patient and carer experience can be developed and delivered. The study is being conducted between 1 December 2014 and 31 December 2015.


Ethics and dissemination No human subjects or personal data are involved and no ethical issues are anticipated. An important element of dissemination is informing user communities about the practical implications of the work through workshops, meetings and social media. Scientific results will be published in peer reviewed journals and disseminated through conferences.


Trial registration number PROSPERO CRD42014014547.
0959-8138
e007372-e007372
May, C. R.
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Masters, J.
254e1309-9c4a-44cf-a9b7-2c5cf46350ac
Welch, L.
2884956f-21b6-47e7-8321-1409f5346cac
Hunt, K.
5eab8123-1157-4d4e-a7d9-5fd817218c6e
Pope, C.
21ae1290-0838-4245-adcf-6f901a0d4607
Myall, M.
0604ba0f-75c2-4783-9afe-aa54bf81513f
Griffiths, P.
ac7afec1-7d72-4b83-b016-3a43e245265b
Roderick, P.
dbb3cd11-4c51-4844-982b-0eb30ad5085a
Glanville, J.
df3ea5b3-60b3-4b14-bd67-50c37ccb95ff
Richardson, A.
3db30680-aa47-43a5-b54d-62d10ece17b7
May, C. R.
17697f8d-98f6-40d3-9cc0-022f04009ae4
Masters, J.
254e1309-9c4a-44cf-a9b7-2c5cf46350ac
Welch, L.
2884956f-21b6-47e7-8321-1409f5346cac
Hunt, K.
5eab8123-1157-4d4e-a7d9-5fd817218c6e
Pope, C.
21ae1290-0838-4245-adcf-6f901a0d4607
Myall, M.
0604ba0f-75c2-4783-9afe-aa54bf81513f
Griffiths, P.
ac7afec1-7d72-4b83-b016-3a43e245265b
Roderick, P.
dbb3cd11-4c51-4844-982b-0eb30ad5085a
Glanville, J.
df3ea5b3-60b3-4b14-bd67-50c37ccb95ff
Richardson, A.
3db30680-aa47-43a5-b54d-62d10ece17b7

May, C. R., Masters, J., Welch, L., Hunt, K., Pope, C., Myall, M., Griffiths, P., Roderick, P., Glanville, J. and Richardson, A. (2015) EXPERTS 1 - experiences of long-term life-limiting conditions among patients and carers: protocol for a qualitative meta-synthesis and conceptual modelling study. British Medical Journal, 5 (4), e007372-e007372. (doi:10.1136/bmjopen-2014-007372).

Record type: Article

Abstract


Introduction Increasing numbers of the population are living with long-term life-limiting conditions with a significant proportion characterised by multimorbidity. Patients with these conditions often experience high volumes of clinical interaction involving them, their caregivers and healthcare providers in complex patterns of organising, coordinating, negotiating and managing care. A better understanding of the sources of experienced complexity and multimorbidity, from the patient perspective is paramount to improve capacity and manage workload to promote improved experience of illness, more effective healthcare utilisation and improved healthcare outcomes. To better understand the sources of complexity we will undertake an evidence synthesis of qualitative studies of patient and informal carer experiences of three common long-term life-limiting conditions. We will investigate what is known about these diseases at different stages in disease progression, treatment regimens and places of care.


Method and analysis We will include qualitative studies of patients’ and carers’ (aged >18) accounts of their experiences of healthcare provision in a range of settings and healthcare systems. We will conduct an extensive electronic database search of publications in English between 2000 and 2014. Results and discussions sections of the papers will be regarded as formal data using the constant comparison method of qualitative analysis. From the meta-synthesis results, we will build a conceptual model of mechanisms and processes that shape patients’ journeys towards end of life to suggest where in the patient journey new interventions to improve patient and carer experience can be developed and delivered. The study is being conducted between 1 December 2014 and 31 December 2015.


Ethics and dissemination No human subjects or personal data are involved and no ethical issues are anticipated. An important element of dissemination is informing user communities about the practical implications of the work through workshops, meetings and social media. Scientific results will be published in peer reviewed journals and disseminated through conferences.


Trial registration number PROSPERO CRD42014014547.

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More information

Accepted/In Press date: 19 January 2015
Published date: 2 April 2015
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 378928
URI: http://eprints.soton.ac.uk/id/eprint/378928
ISSN: 0959-8138
PURE UUID: 30f01b19-3939-421f-a808-0a95616d7ef7
ORCID for C. R. May: ORCID iD orcid.org/0000-0002-0451-2690
ORCID for L. Welch: ORCID iD orcid.org/0000-0001-5564-2252
ORCID for K. Hunt: ORCID iD orcid.org/0000-0002-6173-7319
ORCID for C. Pope: ORCID iD orcid.org/0000-0002-8935-6702
ORCID for M. Myall: ORCID iD orcid.org/0000-0001-8733-7412
ORCID for P. Griffiths: ORCID iD orcid.org/0000-0003-2439-2857
ORCID for P. Roderick: ORCID iD orcid.org/0000-0001-9475-6850
ORCID for A. Richardson: ORCID iD orcid.org/0000-0003-3127-5755

Catalogue record

Date deposited: 16 Jul 2015 10:26
Last modified: 21 Nov 2021 03:32

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Contributors

Author: C. R. May ORCID iD
Author: J. Masters
Author: L. Welch ORCID iD
Author: K. Hunt ORCID iD
Author: C. Pope ORCID iD
Author: M. Myall ORCID iD
Author: P. Griffiths ORCID iD
Author: P. Roderick ORCID iD
Author: J. Glanville
Author: A. Richardson ORCID iD

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