‘It's my pleasure?’: the views of palliative care patients about being asked to participate in research

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dc.contributor.author Bellamy, G en
dc.contributor.author Gott, M en
dc.contributor.author Frey, Rosemary en
dc.contributor.editor Davis, M en
dc.date.accessioned 2012-02-19T21:24:45Z en
dc.date.issued 2011 en
dc.identifier.citation Progress in Palliative Care 19(4):159-164 2011 en
dc.identifier.issn 0969-9260 en
dc.identifier.uri http://hdl.handle.net/2292/11504 en
dc.description.abstract Background There is a paucity of studies which explore palliative care patients’ involvement in research. The involvement of patients with a life-limiting illness in research raises numerous ethical concerns for researchers keen to take account of their views and experiences of service provision. Assumptions are readily made about whether participation is appropriate for this patient group due to their perceived vulnerability. Aim To explore the views of hospice users regarding their motivations for taking part in a study, designed to inform the delivery of care, and ensure ongoing service improvement. Methods Based on a larger pilot study to examine patients’ satisfaction with hospice care, and using a qualitative interview approach, twenty-one patients under the care of three hospices in the Auckland region of New Zealand took part. Interviews were recorded and transcribed verbatim. Data were analysed using a thematic analysis technique. Results The involvement of hospice users in research is important and has the capacity to produce a diverse, but significant impact on those involved. Not only does their involvement demonstrate the potential to shape service provision, it also reveals the therapeutic benefits to individuals with a life-limiting illness of simply taking part. Of particular importance is the view that participation enables a sense of personhood to be maintained circumventing the potential of a ‘social death’. Unless they are unable to consent, palliative care patients should be regarded as autonomous individuals and given the opportunity to participate in research. en
dc.publisher Maney Publishing en
dc.relation.ispartofseries Progress in Palliative Care en
dc.rights Items in ResearchSpace are protected by copyright, with all rights reserved, unless otherwise indicated. Previously published items are made available in accordance with the copyright policy of the publisher. Details obtained from http://www.sherpa.ac.uk/romeo/issn/0969-9260/ en
dc.rights.uri https://researchspace.auckland.ac.nz/docs/uoa-docs/rights.htm en
dc.subject Hospice; Palliative care patients; Research participation; Ethical issues; End-of-life care en
dc.title ‘It's my pleasure?’: the views of palliative care patients about being asked to participate in research en
dc.type Journal Article en
dc.identifier.doi 10.1179/1743291X11Y.0000000008 en
pubs.issue 4 en
pubs.begin-page 159 en
pubs.volume 19 en
dc.rights.holder Copyright: W.S. Maney & Son Ltd. en
pubs.end-page 164 en
pubs.publication-status Published en
dc.rights.accessrights http://purl.org/eprint/accessRights/RestrictedAccess en
pubs.subtype Article en
pubs.elements-id 236765 en
pubs.org-id Medical and Health Sciences en
pubs.org-id Nursing en
pubs.record-created-at-source-date 2011-11-02 en


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