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Appears in Collections:Faculty of Health Sciences and Sport Journal Articles
Peer Review Status: Refereed
Title: Key challenges and ways forward in researching the "good death": qualitative in-depth interview and focus group study
Author(s): Kendall, Marilyn
Harris, Fiona Margaret
Boyd, Kirsty
Sheikh, Aziz
Murray, Scott A
Brown, Duncan
Mallinson, Ian
Kearney, Nora
Worth, Allison
Contact Email:
Keywords: research
research methods
end of life
end of life care
Patient participation
End-of-life care
Cancer research
Issue Date: 8-Mar-2007
Date Deposited: 2-Jun-2009
Citation: Kendall 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.;
Abstract: Objective 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.
DOI Link: 10.1136/bmj.39097.582639.55
Rights: Published in BMJ (British Medical Journal). Copyright 2007 BMJ Publishing Group Ltd.

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