期刊
PALLIATIVE MEDICINE
卷 27, 期 10, 页码 908-917出版社
SAGE PUBLICATIONS LTD
DOI: 10.1177/0269216313488018
关键词
Ethics; research; guidance development; expert workshop; consensus methods; online consultation; palliative care; end-of-life care
类别
资金
- National Institute for Health Research
- Medical Research Council as part of the Methodology Research Programme [G0802654/1]
- National Institutes of Health Research (NIHR) [CAT/CL10/003] Funding Source: National Institutes of Health Research (NIHR)
- Medical Research Council [G0802654] Funding Source: researchfish
- National Institute for Health Research [CAT/CL10/003] Funding Source: researchfish
- MRC [G0802654] Funding Source: UKRI
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. 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. 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. 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. 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.
作者
我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。
推荐
暂无数据