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 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.
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.
| Original language | English |
|---|---|
| Number of pages | 5 |
| Journal | BMJ Supportive & Palliative Care |
| DOIs | |
| Publication status | Accepted/In press - 16 Jan 2019 |
Keywords
- community nursing
- general practice
- home care
- primary care
- research methods
- terminal care