Hospice patients’ views on research in palliative care
Background: This project was conducted to investigate whether the concerns that researchers have about including terminally ill patients in research were shared by a sample of terminally ill patients.----- Methods: Twenty-two patients admitted to a hospice participated in semistructured interviews; 18 patients had advanced malignant disease and 13 were women; their ages ranged from 28 to 93 years. The interview transcripts were analysed for common themes and particular attention was paid to the reasons patients gave for their views.----- Results: All the patients wanted to participate in research. Patients advanced one or more of several reasons for participation, the commonest being altruism, enhancement of a sense of personal value, the assertion of persisting autonomy and the value they placed on a commitment by doctors to optimising care by research. They rejected the view that their consent might be non-autonomous and put forward consistent views about what they considered relevant to consent.----- Conclusions: Our patients did not share the concerns of ethicists about the difficulties and hazards of research with the terminally ill. These patients’ views are not reflected in the professional consensus.
Impact and interest:
Citation counts are sourced monthly from and citation databases.
These databases contain citations from different subsets of available publications and different time periods and thus the citation count from each is usually different. Some works are not in either database and no count is displayed. Scopus includes citations from articles published in 1996 onwards, and Web of Science® generally from 1980 onwards.
Citations counts from theindexing service can be viewed at the linked Google Scholar™ search.
Full-text downloads displays the total number of times this work’s files (e.g., a PDF) have been downloaded from QUT ePrints as well as the number of downloads in the previous 365 days. The count includes downloads for all files if a work has more than one.
|Item Type:||Journal Article|
|Keywords:||Hospice patients, Views on research, Palliative care|
|Divisions:||Past > QUT Faculties & Divisions > Faculty of Built Environment and Engineering
Current > QUT Faculties and Divisions > Faculty of Education
Past > Schools > School of Design
|Copyright Owner:||Copyright 2006 Blackwell Publishing|
|Copyright Statement:||The definitive version is available on publication at www3.interscience.wiley.com|
|Deposited On:||08 Jun 2009 23:54|
|Last Modified:||29 Feb 2012 13:18|
Repository Staff Only: item control page