Primary palliative care research: opportunities and challenges.
community nursing
general practice
home care
primary care
research methods
terminal care
Journal
BMJ supportive & palliative care
ISSN: 2045-4368
Titre abrégé: BMJ Support Palliat Care
Pays: England
ID NLM: 101565123
Informations de publication
Date de publication:
Dec 2019
Dec 2019
Historique:
received:
03
09
2018
revised:
15
12
2018
accepted:
16
01
2019
pubmed:
14
2
2019
medline:
26
2
2020
entrez:
14
2
2019
Statut:
ppublish
Résumé
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 Community Care Pathways at the End of Life (CAPE) study investigated primary care provided for patients in the final 6 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 gatekeeping challenges encountered in the CAPE study and how these were addressed. 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. 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 data set.
Identifiants
pubmed: 30755396
pii: bmjspcare-2018-001653
doi: 10.1136/bmjspcare-2018-001653
pmc: PMC6923936
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
468-472Subventions
Organisme : Department of Health
ID : PB-PG-0909-20323
Pays : United Kingdom
Informations de copyright
© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
Déclaration de conflit d'intérêts
Competing interests: None declared.
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