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Research sensitivities to palliative care patients

Research sensitivities to palliative care patients
Research sensitivities to palliative care patients
This paper considers the methodological challenges of researching the health care experiences of palliative care patients and their families. Difficulties in defining a ‘palliative care patient’ are highlighted, and the question of whether there are specific ethical issues when researching palliative care explored. Methodological issues are discussed, including the negotiation of access via health professionals, the choice of appropriate data collection methods and tools, the consequences of high attrition rates and the use of retrospective surveys of bereaved relatives. Key areas for research are identified. These include patients’ and families’ experiences of research participation, the impact of being approached on those who decline, how the characteristics of those who participate differ from those who do not and the likely impact of this on findings. Research is also needed into patient and family motivations for participation, and whether and how these change as the disease progresses. To ensure that the voices of palliative care patients and their families are heard by both service providers and policy-makers, research in this area needs to address the methodological challenges raised in this paper, as well as continuing to explore users’ views.
palliative care, ethics, research methods, end of life care, user involvement.
0961-5423
220-224
Addington-Hall, J.
87560cc4-7562-4f9b-b908-81f3b603fdd8
Addington-Hall, J.
87560cc4-7562-4f9b-b908-81f3b603fdd8

Addington-Hall, J. (2002) Research sensitivities to palliative care patients. European Journal of Cancer Care, 11 (3), 220-224.

Record type: Article

Abstract

This paper considers the methodological challenges of researching the health care experiences of palliative care patients and their families. Difficulties in defining a ‘palliative care patient’ are highlighted, and the question of whether there are specific ethical issues when researching palliative care explored. Methodological issues are discussed, including the negotiation of access via health professionals, the choice of appropriate data collection methods and tools, the consequences of high attrition rates and the use of retrospective surveys of bereaved relatives. Key areas for research are identified. These include patients’ and families’ experiences of research participation, the impact of being approached on those who decline, how the characteristics of those who participate differ from those who do not and the likely impact of this on findings. Research is also needed into patient and family motivations for participation, and whether and how these change as the disease progresses. To ensure that the voices of palliative care patients and their families are heard by both service providers and policy-makers, research in this area needs to address the methodological challenges raised in this paper, as well as continuing to explore users’ views.

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More information

Published date: 2002
Keywords: palliative care, ethics, research methods, end of life care, user involvement.

Identifiers

Local EPrints ID: 11092
URI: http://eprints.soton.ac.uk/id/eprint/11092
ISSN: 0961-5423
PURE UUID: a6c330c9-3fdb-4e62-9b2e-64d509e2c943

Catalogue record

Date deposited: 27 Oct 2004
Last modified: 15 Jul 2019 19:36

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