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Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life

Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life
Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life
Palliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams. Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients.
advanced cancer, palliative care, participatory research, recruitment, sampling
0269-2163
532-537
Hopkinson, J.B.
94af3631-78f6-4057-baaf-e5832dfd9439
Wright, D.N.M.
a55be721-4b15-4555-bf61-73fcb75c1a39
Corner, J.L.
eddc9d69-aa12-4de5-8ab0-b20a6b5765fa
Hopkinson, J.B.
94af3631-78f6-4057-baaf-e5832dfd9439
Wright, D.N.M.
a55be721-4b15-4555-bf61-73fcb75c1a39
Corner, J.L.
eddc9d69-aa12-4de5-8ab0-b20a6b5765fa

Hopkinson, J.B., Wright, D.N.M. and Corner, J.L. (2005) Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life. Palliative Medicine, 19 (7), 532-537. (doi:10.1191/0269216305pm1049oa).

Record type: Article

Abstract

Palliative care researchers face many ethical and practical challenges. In particular, recruitment has proven difficult. New methodologies and methods need to be developed if barriers are to be overcome. This paper presents an example of a participatory approach to research with people receiving palliative care services. The approach was used for recruitment into an in-depth multi-methods study of weight loss and eating difficulties experienced by people with advanced cancer. Methods included a survey of patients on the case-loads of two community palliative care teams working in the South of England in 2003. The questionnaire was returned by 199 patients, 58% of the total patient population under the care of the two teams. Benefits of the approach taken are detailed, but also issues that emerged across the course of recruitment, thus highlighting points of interest for palliative care researchers. It is proposed that the success of the recruitment process can be attributed to the adoption of a context specific participatory approach. Successful recruitment into the study challenges the widely held belief that, for practical and ethical reasons, it is inappropriate to study people who are approaching the end of life. It demonstrates that a participatory approach enables clinical practice and research to share decision making and values, leading to a feasible and successful recruitment process that is acceptable to clinicians, researchers and patients.

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More information

Published date: October 2005
Keywords: advanced cancer, palliative care, participatory research, recruitment, sampling

Identifiers

Local EPrints ID: 19101
URI: http://eprints.soton.ac.uk/id/eprint/19101
ISSN: 0269-2163
PURE UUID: 35807219-1be7-4d65-80b6-4cc9541a3833

Catalogue record

Date deposited: 24 May 2006
Last modified: 15 Mar 2024 06:10

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Contributors

Author: J.B. Hopkinson
Author: D.N.M. Wright
Author: J.L. Corner

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