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dc.contributor.authorBarclay, Stephenen
dc.contributor.authorMoran, Emilyen
dc.contributor.authorBoase, Sueen
dc.contributor.authorJohnson, Margareten
dc.contributor.authorLovick, Robertaen
dc.contributor.authorGraffy, Jonathanen
dc.contributor.authorWhite, Patrick Len
dc.contributor.authorDeboys, Brendaen
dc.contributor.authorHarrison, Katyen
dc.contributor.authorSwash, Brookeen
dc.date.accessioned2019-02-09T00:30:21Z
dc.date.available2019-02-09T00:30:21Z
dc.date.issued2019-12en
dc.identifier.issn2045-435X
dc.identifier.urihttps://www.repository.cam.ac.uk/handle/1810/289036
dc.description.abstractIntroduction Primary care has a central role in palliative and end of life care: 45.6% of deaths in England and Wales occur under the care of primary care teams at home or in care homes. The CAPE (Community cAre Pathways at the End of life) study investigated primary care provided for patients in the final six months of life. This paper highlights the opportunities and challenges associated with primary palliative care research in the UK, describing the methodological, ethical, logistical and gate-keeping challenges encountered in the CAPE study and how these were addressed. The study methods Using a mixed-methods approach, quantitative data were extracted from the general practitioner (GP) and district nurse (DN) records of 400 recently deceased patients in 20 GP practices in the East of England. Focus groups were conducted with some GPs and DNs, and individual interviews held with bereaved carers and other GPs and DNs. The challenges addressed Considerable difficulties were encountered with ethical permissions, with GP, DN and bereaved carer recruitment and both quantitative and qualitative data collection. These were overcome with flexibility of approach, perseverance of the research team and strong user group support. This enabled completion of the study which generated a unique primary palliative care dataset.
dc.description.sponsorshipNational Institute for Health Research (NIHR) Research for Patient Benefit Programme. National Institute for Health Research (NIHR) School for Primary Care Research (SPCR). National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England
dc.format.mediumPrint-Electronicen
dc.languageengen
dc.publisherBMJ Publishing Group
dc.rightsAttribution-NonCommercial 4.0 International
dc.rights.urihttps://creativecommons.org/licenses/by-nc/4.0/
dc.subjectHumansen
dc.subjectPalliative Careen
dc.subjectTerminal Careen
dc.subjectHospice Careen
dc.subjectResearchen
dc.subjectNursesen
dc.subjectHospicesen
dc.subjectNursing Homesen
dc.subjectCommunity Health Servicesen
dc.subjectPrimary Health Careen
dc.subjectEnglanden
dc.subjectWalesen
dc.subjectGeneral Practitionersen
dc.titlePrimary palliative care research: opportunities and challenges.en
dc.typeArticle
prism.endingPage472
prism.issueIdentifier4en
prism.publicationDate2019en
prism.publicationNameBMJ supportive & palliative careen
prism.startingPage468
prism.volume9en
dc.identifier.doi10.17863/CAM.36298
dcterms.dateAccepted2019-01-16en
rioxxterms.versionofrecord10.1136/bmjspcare-2018-001653en
rioxxterms.versionVoR
rioxxterms.licenseref.urihttp://www.rioxx.net/licenses/all-rights-reserveden
rioxxterms.licenseref.startdate2019-12en
dc.contributor.orcidBarclay, Stephen [0000-0002-4505-7743]
dc.identifier.eissn2045-4368
rioxxterms.typeJournal Article/Reviewen
pubs.funder-project-idCambridgeshire Community Services NHS Trust (unknown)
pubs.funder-project-idNIHR�Central Commissioning Facility (CCF) (PB-PG-0909-20323)
cam.orpheus.successThu Jan 30 10:51:36 GMT 2020 - The item has an open VoR version.*
rioxxterms.freetoread.startdate2100-01-01


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Attribution-NonCommercial 4.0 International
Except where otherwise noted, this item's licence is described as Attribution-NonCommercial 4.0 International