Primary palliative care research: opportunities and challenges.
White, Patrick L
BMJ supportive & palliative care
BMJ Publishing Group
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Barclay, S., Moran, E., Boase, S., Johnson, M., Lovick, R., Graffy, J., White, P. L., et al. (2019). Primary palliative care research: opportunities and challenges.. BMJ supportive & palliative care, 9 (4), 468-472. https://doi.org/10.1136/bmjspcare-2018-001653
Introduction 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.
Humans, Palliative Care, Terminal Care, Hospice Care, Research, Nurses, Hospices, Nursing Homes, Community Health Services, Primary Health Care, England, Wales, General Practitioners
National 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
Cambridgeshire Community Services NHS Trust (unknown)
NIHR�Central Commissioning Facility (CCF) (PB-PG-0909-20323)
Embargo Lift Date
External DOI: https://doi.org/10.1136/bmjspcare-2018-001653
This record's URL: https://www.repository.cam.ac.uk/handle/1810/289036
Attribution-NonCommercial 4.0 International
Licence URL: https://creativecommons.org/licenses/by-nc/4.0/