Palliative Care Research
Introduction
In recent times there has been an expansion in the
provision of palliative care services and innovative
programs and projects in Australia. The Centre for Health
Service Development (CHSD) is currently involved in
the evaluation of two of these key programs funded under
the National Palliative Care Program – the Caring
Communities Program (CCP) and the Rural Palliative Care
Program (RPCP).
Our involvement in these programs has highlighted two
important issues. The first relates to the potential
difficulties in obtaining Human Research Ethics Committee
(HRECs) approval for palliative care projects involving
human subjects. The second relates to the need for a
consistent and measured approach to evaluation of palliative
care services and programs.
Subsequently, the CHSD was commissioned by the Australian
Government to produce two
informative booklets to provide additional information
relating to navigating palliative care research through
a HREC and evaluating palliative care projects, programs
and services.
These resources are not only useful for projects funded
by the National PalliativeCare Program but also for
the broader research community conducting research in
palliative care.
In addition, the CHSD is the leading research centre
in the Palliative
Care Outcomes Collaboration (PCOC), a collaboration
between four Australian university research centres
which is establishing a voluntary network of palliative
care service providers who collect and submit specific
data items to PCOC for analysis. With funding from the
Department of Health and Ageing, PCOC has the ultimate
aim of developing a national benchmarking system to
improve clinical palliative care outcomes in both the
public and private sectors.
Human
Research Ethics Committees and Palliative Care Research
CHSD produced a guide designed to assist palliative
care researchers to prepare sound research ethics applications
for review by Human Research Ethics Committees and to
undertake ethical palliative care research that is consistent
with NHMRC Guidelines. These guidelines have now been reissued in a new form and are available to download from the following link: http://www.nhmrc.gov.au/publications/synopses/_files/e72.pdf
Watch this space for further advice on the implications of the new guidelines for palliative care research.
Evaluating Palliative
Care Services and Programs
The following guide provides a practical guide to the
methods and tools that are available to evaluate palliative
care projects, programs and services.
Evaluation
and palliative care: a guide to the evaluation of palliative
care services and programs (917kb)
Evaluation Tools for
Research in Palliative Care
The above evaluation guide makes reference to a suite
of evaluation tools referred to as the Palliative Care
Evaluation Tool Kit. This kit includes instruments that
have recently been developed and field tested as well
as existing evaluation tools reported in the literature.
Together, these provide a choice of tools with which
to collect evaluation data.
This Tool Kit can be downloaded in PDF format at the
link below:
The
Palliative Care Evaluation Tool Kit
The individual tools within this kit are supported
by an electronic evaluation database which allows the
user to enter data from tools in the Tool Kit into a
user-friendly Microsoft Access database.
This database is freely available to those wishing
to use it at the link below:
The
Palliative Care Database (ZIP
File)
Please note that this database is
written in Access 2000 and may not perform efficiently
in earlier versions.
Palliative Care in Tasmania:
Current Situation and Future Directions
This report presents the results of a Review commissioned
by the Tasmanian Department of Health and Human Services
(DHHS). In commissioning the Review, the Department
identified a number of increasing challenges for the
Tasmanian Palliative Care Service. These include a 22.4%
increase in demand for services between 2000 and 2003
and an ageing and highly regionalised Tasmanian population.
Staff pressures and turnover had also been identified
as a matter of concern for DHHS.
In summary, the project had two broad elements. The
first was the evaluation element. It included an analysis
of existing palliative care services and an analysis
of supply and demand. The second is the planning element
that includes the development of a model for future
palliative care services.
This report provides details of the methodology used
during the Review as well as data
summaries, findings and recommendations. The report
can be downloaded at the link below:
Palliative
Care in Tasmania: current situation and future directions
Palliative Care Links
CareSearch
- CareSearch is the result of a project funded by the
Australian Government to improve the evidence available
to palliative care clinical practitioners, researchers
and educators nationally.
The project covers a period from 1980 to the present
to create an anthology of works that are otherwise not
available electronically. This anthology includes:
- abstracts from proceedings of scientific meetings
(each of the more than 1500 abstracts has been evaluated
by two independent reviewers in order to establish
the level of evidence)
- government reports
- theses and treatises related to palliative care
from Australian universities
- refereed journal articles not catalogued on general
medical databases.
Palliative
Care Outcomes Collaboration - For detailed
information on the palliative care outcomes work at
CHSD, please visit the PCOC website.
Caring Communites
Program - Information on the Caring Communites
Program, a palliative care orientated research project
conducted by the CHSD, is available including reports
and tool kits.
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