Please use this identifier to cite or link to this item: http://hdl.handle.net/1893/1278
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dc.contributor.authorKendall, Marilynen_UK
dc.contributor.authorHarris, Fiona Margareten_UK
dc.contributor.authorBoyd, Kirstyen_UK
dc.contributor.authorSheikh, Azizen_UK
dc.contributor.authorMurray, Scott Aen_UK
dc.contributor.authorBrown, Duncanen_UK
dc.contributor.authorMallinson, Ianen_UK
dc.contributor.authorKearney, Noraen_UK
dc.contributor.authorWorth, Allisonen_UK
dc.date.accessioned2014-09-14T00:35:06Z-
dc.date.available2014-09-14T00:35:06Z-
dc.date.issued2007-03-08en_UK
dc.identifier.urihttp://hdl.handle.net/1893/1278-
dc.description.abstractObjective To understand key challenges in researching end of life issues and identify ways of overcoming these. Design Qualitative study involving in-depth interviews with researchers and focus groups with people affected by cancer. Participants An international sample of 32 researchers; seven patients with experience of cancer; and four carers in south east Scotland. Results Researchers highlighted the difficulty of defining the end of life, overprotective gatekeeping by ethics committees and clinical staff, the need to factor in high attrition rates associated with deterioration or death, and managing the emotions of participants and research staff. People affected by cancer and researchers suggested that many people nearing the end of life do want to be offered the chance to participate in research, provided it is conducted sensitively. Although such research can be demanding, most researchers believed it to be no more problematic than many other areas of research and that the challenges identified can be overcome. Conclusions The continuing taboos around death and dying act as barriers to the commissioning and conduct of end of life research. Some people facing death, however, may want to participate in research and should be allowed to do so. Ethics committees and clinical staff must balance understandable concern about nonmaleficence with the right of people with advanced illness to participate in research. Despite the inherent difficulties, end of life research can be conducted with ethical and methodological rigour. Adequate psychological support must be provided for participants, researchers, and transcribers.en_UK
dc.language.isoenen_UK
dc.publisherBMJ Publishing Group Ltd / British Medical Associationen_UK
dc.relationKendall M, Harris FM, Boyd K, Sheikh A, Murray SA, Brown D, Mallinson I, Kearney N & Worth A (2007) Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study. BMJ, 334 (7592), pp. 521-526. http://www.bmj.com/; https://doi.org/10.1136/bmj.39097.582639.55en_UK
dc.rightsPublished in BMJ (British Medical Journal). Copyright 2007 BMJ Publishing Group Ltd.en_UK
dc.subjectresearchen_UK
dc.subjectresearch methodsen_UK
dc.subjectend of lifeen_UK
dc.subjectend of life careen_UK
dc.subjectqualitativeen_UK
dc.subjectinterviewsen_UK
dc.subjectPatient participationen_UK
dc.subjectDeathen_UK
dc.subjectEnd-of-life careen_UK
dc.subjectCancer researchen_UK
dc.titleKey challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group studyen_UK
dc.typeJournal Articleen_UK
dc.identifier.doi10.1136/bmj.39097.582639.55en_UK
dc.citation.jtitleBMJen_UK
dc.citation.issn1756-1833en_UK
dc.citation.issn0959-8138en_UK
dc.citation.volume334en_UK
dc.citation.issue7592en_UK
dc.citation.spage521en_UK
dc.citation.epage526en_UK
dc.citation.publicationstatusPublisheden_UK
dc.citation.peerreviewedRefereeden_UK
dc.type.statusVoR - Version of Recorden_UK
dc.identifier.urlhttp://www.bmj.com/en_UK
dc.author.emailfiona.harris@stir.ac.uken_UK
dc.contributor.affiliationUniversity of Edinburghen_UK
dc.contributor.affiliationNMAHPen_UK
dc.contributor.affiliationUniversity of Edinburghen_UK
dc.contributor.affiliationUniversity of Edinburghen_UK
dc.contributor.affiliationUniversity of Edinburghen_UK
dc.contributor.affiliationSt Columba's Hospiceen_UK
dc.contributor.affiliationUniversity of Edinburghen_UK
dc.contributor.affiliationHealth Sciences Research - Stirling - LEGACYen_UK
dc.contributor.affiliationUniversity of Edinburghen_UK
dc.identifier.isiWOS:000245106400042en_UK
dc.identifier.scopusid2-s2.0-33947534009en_UK
dc.identifier.wtid816876en_UK
dc.contributor.orcid0000-0003-3258-5624en_UK
dcterms.dateAccepted2007-03-08en_UK
dc.date.filedepositdate2009-06-02en_UK
rioxxterms.typeJournal Article/Reviewen_UK
rioxxterms.versionVoRen_UK
local.rioxx.authorKendall, Marilyn|en_UK
local.rioxx.authorHarris, Fiona Margaret|0000-0003-3258-5624en_UK
local.rioxx.authorBoyd, Kirsty|en_UK
local.rioxx.authorSheikh, Aziz|en_UK
local.rioxx.authorMurray, Scott A|en_UK
local.rioxx.authorBrown, Duncan|en_UK
local.rioxx.authorMallinson, Ian|en_UK
local.rioxx.authorKearney, Nora|en_UK
local.rioxx.authorWorth, Allison|en_UK
local.rioxx.projectInternal Project|University of Stirling|https://isni.org/isni/0000000122484331en_UK
local.rioxx.freetoreaddate2009-06-02en_UK
local.rioxx.licencehttp://www.rioxx.net/licenses/all-rights-reserved|2009-06-02|en_UK
local.rioxx.filenameKendall Harris et al 2007.pdfen_UK
local.rioxx.filecount1en_UK
local.rioxx.source0959-8138en_UK
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