Palliative Care Research

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 CHSD has been involved in the evaluation of several key programs funded under the National Palliative Care Program – including 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 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 Palliative Care Program but also for the broader research community conducting research in palliative care.

In addition, AHSRI is home to the Palliative Care Outcomes Collaboration (PCOC), a collaboration between four Australian university research centres which has established 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, PCOC has has developed 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:

Masso M, Dodds S, Fildes D, Yeatman H and Eagar K (2004) Ethical research in palliative care: a guide through the Human Research Ethics Committee process. Centre for Health Service Development, University of Wollongong.

 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.

Eagar K, Cranny C and Fildes D (2004) Evaluation and palliative care: a guide to the evaluation of palliative care services and programs. Centre for Health Service Development, University of Wollongong.

 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.

 Links to CHSD Palliative Care Projects

 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.

Palliative Care Outcomes Collaboration - For detailed information on the palliative care outcomes work at AHSRI, please visit the PCOC website.

Palliative Care

Last reviewed: 25 January, 2017

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