How to involve cancer patients at the end of life as co-researchers

Wright, D. N., Hopkinson, Jane B. ORCID: https://orcid.org/0000-0002-3915-9815, Corner, J. L. and Foster, C. L. 2006. How to involve cancer patients at the end of life as co-researchers. Palliative Medicine 20 (8) , pp. 821-827. 10.1177/0269216306073110

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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 coresearchers. 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.

Item Type:	Article
Status:	Published
Schools:	Healthcare Sciences
Subjects:	R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine R Medicine > RC Internal medicine > RC0254 Neoplasms. Tumors. Oncology (including Cancer) R Medicine > RT Nursing
Uncontrolled Keywords:	Palliative care ; Patient involvement ; Patient participation ; Research ; User involvement.
Publisher:	SAGE Publications
ISSN:	0269-2163
Last Modified:	18 Oct 2022 12:20
URI:	https://orca.cardiff.ac.uk/id/eprint/9428

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