What do palliative care patients and their relatives think about research in palliative care?-a systematic review.
BACKGROUND
Research in palliative care patients has been controversial and is often challenging. It is important to know the views of potentially eligible patients themselves in order to determine the appropriateness of research in the palliative care population and to develop realistic studies that are practical and achievable in this population. This systematic review aims to identify the views of palliative care patients and their families towards research, the factors that are important when considering participation, and the types of research trial they would support or reject.


METHODS
A systematic literature review was undertaken to identify what is known to date regarding the views of palliative care patients and their relatives towards research participation. Eight relevant studies were identified.


CONCLUSIONS
There is an increasing body of evidence considering the views of palliative care patients towards research in palliative care. However, only three studies have considered the views of their relatives/caregivers. Several common themes emerged from the literature including the potential for personal gain, altruism, the wish to avoid complex studies and a desire to retain autonomy. Trial-related factors were also important determinants of willingness of patients and relatives to participate in research. The views expressed by palliative care patients towards research are similar to those of other patient populations.


CONCLUSIONS
Research to date in the palliative care setting has suggested that patients are interested in participating in research and may actually benefit from doing so.
White
Clare
C
Northern Ireland Hospice Care, Belfast, 3LH, Northern Ireland. clarewhite100@hotmail.com
Hardy
Janet
J
D035843:Biomedical Research / Q000379:methods; D002986:Clinical Trials as Topic / Q000379:methods / Q000523:psychology*; D003625:Data Collection; D006801:Humans; D010166:Palliative Care / Q000379:methods / Q000523:psychology*; D010358:Patient Participation / Q000523:psychology*; D026684:Personal Autonomy
Intern Med J. 2006 Jul;36(7):406-13
16780445
Br J Cancer. 2000 Jun;82(11):1783-8
10839291
Palliat Med. 1994 Oct;8(4):298-305
7529102
Eur J Cancer. 2008 Sep;44(13):1820-8
18550360
BMJ. 2007 Mar 10;334(7592):521
17329313
J Intern Med. 2002 Feb;251(2):156-68
11905591
Palliat Med. 1997 Sep;11(5):415-8
9472601
Br J Cancer. 1995 Jun;71(6):1270-4
7779722
Eur J Cancer. 2000 Mar;36(5):621-6
10738127
Med J Aust. 2006 Feb 20;184(4):196-7
16489909
Int J Palliat Nurs. 2003 Mar;9(3):120-3
12682574
Soc Sci Med. 1991;32(1):35-42
2008619
J Nurs Scholarsh. 2003;35(4):371-6
14735681
J Palliat Med. 2006 Aug;9(4):968-74
16910811
Palliat Med. 2001 Mar;15(2):163-8
11301670
Palliat Med. 2003 Sep;17(6):491-7
14526881
Eur J Cancer. 1998 Sep;34(10):1554-9
9893627