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MORECare research methods guidance development: recommendations for ethical issues in palliative and end-of-life care research

Research output: Contribution to journalJournal article

Published

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MORECare research methods guidance development : recommendations for ethical issues in palliative and end-of-life care research. / Gysels, Marjolein; Evans, Catherine J.; Lewis, Penney; Speck, Peter; Benalia, Hamid; Preston, Nancy J.; Grande, Gunn E.; Short, Vicky; Owen-Jones, Eleanor; Todd, Chris J.; Higginson, Irene J.

In: Palliative Medicine, Vol. 27, No. 10, 12.2013, p. 908-917.

Research output: Contribution to journalJournal article

Harvard

Gysels, M, Evans, CJ, Lewis, P, Speck, P, Benalia, H, Preston, NJ, Grande, GE, Short, V, Owen-Jones, E, Todd, CJ & Higginson, IJ 2013, 'MORECare research methods guidance development: recommendations for ethical issues in palliative and end-of-life care research' Palliative Medicine, vol 27, no. 10, pp. 908-917., 10.1177/0269216313488018

APA

Gysels, M., Evans, C. J., Lewis, P., Speck, P., Benalia, H., Preston, N. J., ... Higginson, I. J. (2013). MORECare research methods guidance development: recommendations for ethical issues in palliative and end-of-life care research. Palliative Medicine, 27(10), 908-917. 10.1177/0269216313488018

Vancouver

Gysels M, Evans CJ, Lewis P, Speck P, Benalia H, Preston NJ et al. MORECare research methods guidance development: recommendations for ethical issues in palliative and end-of-life care research. Palliative Medicine. 2013 Dec;27(10):908-917. Available from: 10.1177/0269216313488018

Author

Gysels, Marjolein; Evans, Catherine J.; Lewis, Penney; Speck, Peter; Benalia, Hamid; Preston, Nancy J.; Grande, Gunn E.; Short, Vicky; Owen-Jones, Eleanor; Todd, Chris J.; Higginson, Irene J. / MORECare research methods guidance development : recommendations for ethical issues in palliative and end-of-life care research.

In: Palliative Medicine, Vol. 27, No. 10, 12.2013, p. 908-917.

Research output: Contribution to journalJournal article

Bibtex

@article{8cdfcc0f5e5c4dc7b18752780886ccb5,
title = "MORECare research methods guidance development",
author = "Marjolein Gysels and Evans, {Catherine J.} and Penney Lewis and Peter Speck and Hamid Benalia and Preston, {Nancy J.} and Grande, {Gunn E.} and Vicky Short and Eleanor Owen-Jones and Todd, {Chris J.} and Higginson, {Irene J.}",
note = "“The final, definitive version of this article has been published in the Journal, Palliative Medicine, 27 (10), 2013, © SAGE Publications Ltd, 2013 by SAGE Publications Ltd at the Palliative Medicine page: http://pmj.sagepub.com/ on SAGE Journals Online: http://online.sagepub.com/",
year = "2013",
doi = "10.1177/0269216313488018",
volume = "27",
number = "10",
pages = "908--917",
journal = "Palliative Medicine",
issn = "0269-2163",

}

RIS

TY - JOUR

T1 - MORECare research methods guidance development

T2 - recommendations for ethical issues in palliative and end-of-life care research

A1 - Gysels,Marjolein

A1 - Evans,Catherine J.

A1 - Lewis,Penney

A1 - Speck,Peter

A1 - Benalia,Hamid

A1 - Preston,Nancy J.

A1 - Grande,Gunn E.

A1 - Short,Vicky

A1 - Owen-Jones,Eleanor

A1 - Todd,Chris J.

A1 - Higginson,Irene J.

AU - Gysels,Marjolein

AU - Evans,Catherine J.

AU - Lewis,Penney

AU - Speck,Peter

AU - Benalia,Hamid

AU - Preston,Nancy J.

AU - Grande,Gunn E.

AU - Short,Vicky

AU - Owen-Jones,Eleanor

AU - Todd,Chris J.

AU - Higginson,Irene J.

PY - 2013/12

Y1 - 2013/12

N2 - Background:There is little guidance on the particular ethical concerns that research raises with a palliative care population.Aim:To present the process and outcomes of a workshop and consensus exercise on agreed best practice to accommodate ethical issues in research on palliative care.<br/><br/>Design:Consultation workshop using the MORECare Transparent Expert Consultation approach. Prior to workshops, participants were sent overviews of ethical issues in palliative care. Following the workshop, nominal group techniques were used to produce candidate recommendations. These were rated online by participating experts. Descriptive statistics were used to analyse agreement and consensus. Narrative comments were collated.<br/><br/>Setting/participants:Experts in ethical issues and palliative care research were invited to the Cicely Saunders Institute in London. They included senior researchers, service providers, commissioners, researchers, members of ethics committees and policy makers.<br/><br/>Results:The workshop comprised 28 participants. A total of 16 recommendations were developed. There was high agreement on the issue of research participation and high to moderate agreement on applications to research ethics committees. The recommendations on obtaining and maintaining consent from patients and families were the most contentious. Nine recommendations were refined on the basis of the comments from the online consultation.<br/><br/>Conclusions:The culture surrounding palliative care research needs to change by fostering collaborative approaches between all those involved in the research process. Changes to the legal framework governing the research process are required to enhance the ethical conduct of research in palliative care. The recommendations are relevant to all areas of research involving vulnerable adults.

AB - Background:There is little guidance on the particular ethical concerns that research raises with a palliative care population.Aim:To present the process and outcomes of a workshop and consensus exercise on agreed best practice to accommodate ethical issues in research on palliative care.<br/><br/>Design:Consultation workshop using the MORECare Transparent Expert Consultation approach. Prior to workshops, participants were sent overviews of ethical issues in palliative care. Following the workshop, nominal group techniques were used to produce candidate recommendations. These were rated online by participating experts. Descriptive statistics were used to analyse agreement and consensus. Narrative comments were collated.<br/><br/>Setting/participants:Experts in ethical issues and palliative care research were invited to the Cicely Saunders Institute in London. They included senior researchers, service providers, commissioners, researchers, members of ethics committees and policy makers.<br/><br/>Results:The workshop comprised 28 participants. A total of 16 recommendations were developed. There was high agreement on the issue of research participation and high to moderate agreement on applications to research ethics committees. The recommendations on obtaining and maintaining consent from patients and families were the most contentious. Nine recommendations were refined on the basis of the comments from the online consultation.<br/><br/>Conclusions:The culture surrounding palliative care research needs to change by fostering collaborative approaches between all those involved in the research process. Changes to the legal framework governing the research process are required to enhance the ethical conduct of research in palliative care. The recommendations are relevant to all areas of research involving vulnerable adults.

KW - Ethics

KW - research

KW - guidance development

KW - expert workshop

KW - consensus methods

KW - online consultation

KW - palliative care

KW - end-of-life care

UR - http://pmj.sagepub.com/content/27/10/908

U2 - 10.1177/0269216313488018

DO - 10.1177/0269216313488018

M1 - Journal article

JO - Palliative Medicine

JF - Palliative Medicine

SN - 0269-2163

IS - 10

VL - 27

SP - 908

EP - 917

ER -