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Primary palliative care research: opportunities and challenges
  1. Stephen Barclay1,
  2. Emily Moran1,
  3. Sue Boase1,
  4. Margaret Johnson1,
  5. Roberta Lovick1,
  6. Jonathan Graffy1,
  7. Patrick L White2,
  8. Brenda Deboys3,
  9. Katy Harrison4 and
  10. Brooke Swash1
  1. 1 Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK
  2. 2 Department of Primary Care and Public Health Sciences, King's College London, London, UK
  3. 3 Clinical Research Network Eastern; Primary Care, Cambridge, UK
  4. 4 Cambridgeshire and Peterborough NHS Foundation Trust, Fulbourn, UK
  1. Correspondence to Dr Stephen Barclay, Primary Care Unit, University of Cambridge, Cambridge CB2 1TN, UK; sigb2{at}medschl.cam.ac.uk

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.

  • terminal care
  • home care
  • general practice
  • primary care
  • community nursing
  • research methods

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors SB was the principal investigator and designed the study with PLW and JG. EM, SB and BS undertook data collection and data analysis. MJ and RL were members of the PPI group. BD and KH supported GP practice and community nursing team recruitment. All authors met regularly as members of the study advisory group throughout the project, supporting recruitment, data collection, data analysis and interpretation. All have contributed to the manuscript and have approved the final version.

  • Funding This paper presents independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0909-20323). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. BS received funding from the NIHR School for Primary Care Research (SPCR). SB is supported by the NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of England at Cambridgeshire and Peterborough NHS Foundation Trust.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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