How to involve cancer patients at the end of life as co-researchers
How to involve cancer patients at the end of life as co-researchers
The importance of user involvement in the organisation and delivery of health services and the conduct of research has increased over recent decades. Involving people at the end of life in research remains an under-developed area of research activity. The Macmillan Listening Study, a UK-wide study exploring research views and priorities of people affected by cancer, adopted a participatory research approach. Patients and carers, including two participants receiving palliative care services, collaborated in all aspects of the study as co-researchers. In this paper, we discuss the experience of working with co-researchers to collect data from two hospices. We will discuss practical, ethical and methodological challenges, including specific training needs and the emotional demands of conducting the research. Recommendations are made to facilitate successful collaboration with palliative care service users in end of life research.
palliative care, patient involvement, patient participation, research, user involvement
821-827
Wright, D.
a55be721-4b15-4555-bf61-73fcb75c1a39
Hopkinson, J.
6cb418a6-7a9c-4b19-b84a-4c90c64339e8
Corner, J.
eddc9d69-aa12-4de5-8ab0-b20a6b5765fa
Foster, C.
00786ac1-bd47-4aeb-a0e2-40e058695b73
December 2006
Wright, D.
a55be721-4b15-4555-bf61-73fcb75c1a39
Hopkinson, J.
6cb418a6-7a9c-4b19-b84a-4c90c64339e8
Corner, J.
eddc9d69-aa12-4de5-8ab0-b20a6b5765fa
Foster, C.
00786ac1-bd47-4aeb-a0e2-40e058695b73
Wright, D., Hopkinson, J., Corner, J. and Foster, C.
(2006)
How to involve cancer patients at the end of life as co-researchers.
Palliative Medicine, 20 (8), .
(doi:10.1177/0269216306073110).
Abstract
The importance of user involvement in the organisation and delivery of health services and the conduct of research has increased over recent decades. Involving people at the end of life in research remains an under-developed area of research activity. The Macmillan Listening Study, a UK-wide study exploring research views and priorities of people affected by cancer, adopted a participatory research approach. Patients and carers, including two participants receiving palliative care services, collaborated in all aspects of the study as co-researchers. In this paper, we discuss the experience of working with co-researchers to collect data from two hospices. We will discuss practical, ethical and methodological challenges, including specific training needs and the emotional demands of conducting the research. Recommendations are made to facilitate successful collaboration with palliative care service users in end of life research.
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Published date: December 2006
Keywords:
palliative care, patient involvement, patient participation, research, user involvement
Organisations:
Faculty of Health Sciences
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Local EPrints ID: 43710
URI: http://eprints.soton.ac.uk/id/eprint/43710
ISSN: 0269-2163
PURE UUID: ddf4950d-9a99-40f4-82ce-8bf05e859615
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Date deposited: 31 Jan 2007
Last modified: 16 Mar 2024 03:41
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Author:
J. Hopkinson
Author:
J. Corner
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