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Primary palliative care research: opportunities and challenges.

Published version
Peer-reviewed

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Authors

Moran, Emily 
Boase, Sue 
Johnson, Margaret 
Lovick, Roberta 

Abstract

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 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. 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 data set.

Description

Keywords

community nursing, general practice, home care, primary care, research methods, terminal care, Community Health Services, England, General Practitioners, Hospice Care, Hospices, Humans, Nurses, Nursing Homes, Palliative Care, Primary Health Care, Research, Terminal Care, Wales

Journal Title

BMJ Support Palliat Care

Conference Name

Journal ISSN

2045-435X
2045-4368

Volume Title

9

Publisher

BMJ
Sponsorship
Cambridgeshire Community Services NHS Trust (unknown)
CCF (None)
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