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.
220-224
Addington-Hall, J.
87560cc4-7562-4f9b-b908-81f3b603fdd8
2002
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), .
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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Published date: 2002
Keywords:
palliative care, ethics, research methods, end of life care, user involvement.
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Local EPrints ID: 11092
URI: http://eprints.soton.ac.uk/id/eprint/11092
ISSN: 0961-5423
PURE UUID: a6c330c9-3fdb-4e62-9b2e-64d509e2c943
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Date deposited: 27 Oct 2004
Last modified: 08 Jan 2022 03:42
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