Research Projects

Current Project

Research program to enhance patient and public involvement in palliative care in Australia: An implementation study

There are significant policy, health service and research imperatives to improving patient and community engagement in palliative care. Developing a program of research that focuses on consumer engagement was previously identified as a priority area in the statewide PCRN planning and engagement process. Furthermore, this area is highly relevant to the PCRN goal of fostering collaborative scholarly inquiry and it will provide opportunities for contribution from across Victoria and beyond.

Led by Dr Anna Collins and Dr Stacey Panozzo, this PRCN research program seeks to enhance patient and public involvement (PPI) in palliative care. It will focus on important opportunities in the areas of collaboration and partnership in research activities, contribution to service planning and delivery, and community-driven advocacy. In addition, attention will also be given to developing an evidence-based approach for patient and public involvement in the palliative care sector.

This 3-year program of work seeks to develop, implement, and evaluate a program to enhance patient and public involvement in palliative care in Australia. The specific aims include:

• To establish a Special Interest Group (SIG) to facilitate patient and public involvement in palliative care;
• To develop and implement a patient and public involvement model and suite of resources specific to palliative care;
• To measure the outcomes of enhancing patient and public involvement in palliative care.

For more information on the program, please contact Dr Stacey Panozzo at stacey.panozzo@svha.org.au

 

Past Projects 

StEP care: A Randomised Phase 2 study to examine feasibility of Standardized, Early Palliative Care for patients with Advanced Cancer
Patients with advanced cancer have unmet symptom burden and information needs. Early evidence reveals referral to palliative care appears to address these needs. Yet gaps in understanding remain, particularly around the timing of palliative care for specific cancers, and its impact upon the patient, family and health care system. This study will explore introducing standardized early palliative care at designated time points for patients with advanced lung, breast, prostate and brain cancers. We anticipate early palliative care will improve support and experiences of care for patients, and reduce the current variations in quality cancer care.

Chief Investigator:

  • A/Prof Jennifer Philip, Centre for Palliative Care

Associate Investigators:

  • Prof. Peter Hudson, Centre for Palliative Care
  • Prof Jon Emery, University of Melbourne
  • A/Prof Linda Mileshkin, Peter MacCallum Cancer Centre
  • Anna Collins, Centre for Palliative Care
  • A/Prof Brian Le, Melbourne Health
  • A/Prof Vijaya Sundararajan, University of Melbourne
  • Susan Hanson, Cancer Australia
  • A/Prof Caroline Brand, Melbourne Health
  • Dr Sibilah Breen, Centre for Palliative Care
  • Dr Sam Mancuso, University of Melbourne
  • Dr Sonia Fullerton, Peter MacCallum Cancer Centre
  • Soula Ganiatsas, Palliative Care Research Network

Project Sites:

  • St Vincent's Hospital Melbourne
  • Peter MacCallum Cancer Centre
  • Austin Health

Publications:

  • Philip J, Collins A, Le B, Sundararajan V, Brand C, Hanson S, Emery J, Hudson P, Mileshkin L, Ganiatsas S. A randomised phase ii trial to examine feasibility of standardised, early palliative (STEP) care for patients with advanced cancer and their families [ACTRN12617000534381]: a research protocol. Pilot & Feasibility Studies. 2019 Mar 14; 5:44. doi: 10.1186/s40814-019-0424-7.
     

Family meetings for hospitalized palliative care patients: Benefits and resource implications
Family meetings are recommended as standard practice, as a means whereby health professionals, together with family carers and patients (where able) discuss goals of care, site of care options, psychosocial issues, and plans for the future. These encounters are not usually provided consistently or systematically, nor are they conducted according to best available evidence. The purpose of this project is to evaluate outcomes for patients and family carers who attend a structured family meeting (SFM) using clinical guidelines and to determine the cost and resource implications of implementing SFM into standard practice for hospitalised patients with advanced disease.

Chief Investigators:

  • Prof. Peter Hudson, Centre for Palliative Care
  • Prof. Afaf Girgis, Griffith University
  • Prof. Geoff Mitchel, The University of Queensland
  • A/Prof. Jennifer Philip, Centre for Palliative Care
  • A/Prof. Deborah Parker, The University of Queensland
  • Prof. David Currow, Flinders University of South Australia
  • Prof. Danny Liew, The University of Melbourne
  • Dr. Tina Thomas, Centre for Palliative Care

Associate Investigators:

  • A/Prof. Brian Le, The Royal Melbourne Hospital
  • Dr. Juli Moran, Austin Hospital
  • Caroline Brand, Monash University

Project Sites:

  • St Vincent’s Hospital Melbourne
  • Royal Melbourne Hospital
  • Austin Hospital, Melbourne

Publications:

  • Hudson P, Girgis A, Thomas K, Philip J, Currow DC, Mitchell G, Parker D, Liew D, Brand C, Le B, Moran J. (2021). “Do family meetings for hospitalised palliative care patients improve outcomes and reduce health care costs? A cluster randomised trial”. Palliative Medicine 35(1):188-199. doi: 10.1177/0269216320967282.
  • Hudson P, Thomas K, Girgis A, Mitchell G, Philip J, Parker D, Currow D, Liew D, Le B, Moran J, Brand C. (2018). "Benefits of family meetings for hospitalised palliative care patients and their family caregivers". Abstract of the 22nd International Congress on Palliative Care, Montreal, Canada. Journal of Pain and Symptom Management 56(6):e56-e57. doi: 10.1016/j.jpainsymman.2018.10.168.
  • Hudson P, Girgis A, Mitchell G, Philip J, Parker D, Currow D, Liew D, Thomas K, et al. (2015). "Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol". BMC Palliative Care 14(1):73. doi: 10.1186/s12904-015-0071-6.
     

An evaluation of the support services provided by Very Special Kids for parents of children with a life-threatening condition
Caring for a child with a life-threatening condition can have a significant psychosocial impact on all family members. Very Special Kids (VSK) is Victoria’s sole paediatric hospice. VSK provides a range of support from the time of the child’s diagnosis through to recovery or bereavement. The broad aim of this study was to examine the psychosocial impact of caring for a child with a life-threatening disease, with a view to evaluate the family support services provided by VSK.

Chief Investigators:

  • Dr Anna Collins, Research Fellow, Centre for Palliative Care
  • Dr Kristina Thomas, Senior Research Fellow, Centre for Palliative Care

Conference presentations:

  • Collins A, Thomas K. Improving Psychosocial Support for Parents of Children with a Life-threatening Condition - A Mixed Methods Study. 2nd International Congress on Paediatric Palliative Care, 19-21st November 2014. [Oral Presentation]
  • Collins A. The What Why and How of Service Evaluation: A practical example from an evaluation of the family support services provided by Very Special Kids for parents of children with a life-threatening condition. PCRNV Forum, 11th November 2014. [Oral Presentation]
  • Collins A, Thomas K. Psychosocial wellbeing of parents of children with life-threatening disease. 9th Biennial Palliative Care Victoria Conference: Living, Dying and Grieving Well, Melbourne. 31 July - 1 August 2014 [Oral Presentation].
  • Collins A, Thomas K. Presentation of project recommendations to VSK Staff. 29 July 2014. [Oral Presentation]
  • Collins A, Thomas K. Presentation of project recommendations to VSK Board. 25th August 2014. [Oral Presentation]

Publications:

  • Collins A, Hennessy-Anderson N, Hosking S, Hynson J, Remedios C, Thomas K. (2016). Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study. Palliative Medicine 30(10):950-9. doi: 10.1177/0269216316634245.
  • Collins A, Burchell J, Remedios C, Thomas K. (2020). Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes. Palliative Medicine 34(3):358-366. doi: 10.1177/0269216319892825.


Cancer Care Trajectories Project (PCRNV)
The Cancer Care Trajectories Project is to provide a detailed understanding of patterns of care over the last year of life for people with cancer in Victoria, and to highlight the factors that contribute to their site of care and site of death. The Methods used are Statistical study of health services use; in-depth review of medical records; rapid, critical literature reviews.

Chief Investigators:

  • A/Prof Jennifer Philip, Centre for Palliative Care
  • Prof. Peter Hudson, Centre for Palliative Care
  • A/Prof. Vijaya Sundararajan, Monash University, Melbourne University
  • Prof. Annette Street, La Trobe University
  • Prof Margaret O’Connor AM, Monash University
  • Prof Bruce Rumbold OAM, La Trobe University
  • A/Prof Peter Martin, Barwon Health/Deakin University
  • A/Prof Kate Jackson, Southern Health, Monash University

Associate Investigators:                                  

  • Dr Adam Bostanci, Centre for Palliative Care
  • Dr Dell Horey, La Trobe University
  • Dr Megan Bohensky, Monash University
  • Lise Pittman, Barwon Health
  • Dr Leeroy William, Southern Health
  • Dr Gaye Moore, St Vincent’s Hospital
  • Jackie Kearney, Dept of Health
  • Prof Sanchia Aranda, Cancer Institute of NSW
  • Dr Rachel Zordan

Publications:

  • Hudson P, Collins A, Bostanci A, Willenberg L, Stepanov N, Philip J. (2016). Toward a systematic approach to assessment and care planning in palliative care: A practical review of clinical tools. Palliative and Supportive Care 14(2):161-73. doi: 10.1017/S1478951515000565.
  • Sundararajan, V., Bohensky, M., Moore, G., Brand, C., Lethborg, C., Gold, M., Murphy, M., Collins, A., Philip, J. (2014). Mapping the patterns of care, the receipt of palliative care and the site of death for patients with malignant glioma. Journal of Neuro-Oncology 116(1):119-126.
     

PCRN Small Project Grants

For a list of past PCRN small project grants please click here.
 

PCRN PhD Scholarships

Palliative care for patients with severe Chronic Obstructive Pulmonary Disease – understanding current practice and attitudes to palliative care and exploring a new model of integrated respiratory and palliative care.
(Scholarship awarded in 2015; PhD awarded in 2018) Dr Natasha Smallwood, The University of Melbourne.

The experience of music and music therapy for paediatric palliative care patients and their parents, who come from diverse cultural backgrounds.
(Scholarship awarded in 2014; PhD awarded in 2018) Ms Lucy Forrest, The University of Melbourne.
 

Publications linked to PCRN

For a list of publications linked to the PCRN please click here.