Palliative Care Research Program
An unprecedented $2.25 million grant from The Hospital Research Foundation Group will help pioneer a five-year study to improve access to end-of-life services for vulnerable community groups. The study will seek to promote death literacy as part of a broader project to improve access to end-of-life services for many vulnerable South Australians. Due to limitations in some communities surrounding geography, education, economics, and accessibility, palliative care is not currently equally available to all South Australians.
“Everyone deserves access to quality palliative care regardless of where they live.”
The project, officially launched in October 2022, is being led by Associate Professor Jaklin Eliott from the University of Adelaide who says, speaking honestly and openly about death is an important, but often underestimated part, of palliative care. In an SA first, palliative care researchers from the University of Adelaide will collaborate with the University of South Australia, Flinders University, and various local health networks and peak advocacy organisations to help bridge the gap for palliative care. In consultation with patients and families, communities, and not-for-profit organisations, and with clinicians and policymakers, A/Professor Eliott explains:
“We will identify and develop resources to address what is needed to support under-served South Australians to access end-of-life care that is preferred by and meaningful to patients and their carers.”
Find out more about this innovative research project delivering improved palliative care services to some of the most vulnerable and marginalised in our community here.
The Research
Palliative care is not equally available to all Australians, for reasons including where they live, costs of care, workforce issues, as well as awareness and accessibility of palliative care.
We know that there are some population groups and communities who do not access palliative care services as often as others. This means that we aren’t providing these under-served communities with the information and services they need when, where, and how they need them. With an ageing population in Australia the number of people needing palliative care is forecast to increase. This research program will focus on addressing the challenges under-served South Australian people and communities experience in accessing end-of-life care, whilst continuing to strengthen what is working well.
In this five-year transformative research program, we will identify and develop resources to best support under-served South Australians to access end-of-life care that is preferred by and meaningful to patients and their carers. As end-of-life care is provided in multiple settings, including within hospitals, within communities, and within families, this research program will examine the provision and receipt of care in all three setting.
This research program is built on close collaboration between our experienced research team and our extensive network of partners representing community, clinical, and policy interests. This will ensure that what we do, and how we do it, is done hand-in-hand with our partners, so our research outcomes will be translated into meaningful and sustainable change.
The program consists of five individual projects, all underpinned by the key principles of knowledge translation, co-design, and community engagement.
This study is about working with several South Australian communities to develop resources about how to live as well as possible when someone is approaching the end of their life.
Under-served communities in South Australia—including rural, culturally and linguistically diverse communities, and those living with a reduced income—will be included in this study, which aims to increase community awareness and familiarity with the language, knowledge and practical skills needed to make active choices about care at the end of life. We will work closely with community leaders to determine levels of understanding and access to end-of-life care, provide training opportunities to upskill local leaders and determine how best to improve awareness and resources within these communities according to their priorities and preferences. In addition, we will collaborate with those communities to identify how we can also help to increase clinicians’ knowledge and practical skills in engaging with under-served individuals, families, and communities to provide appropriate end-of-life care for all South Australians.
Study leads: A/Prof Jaklin Eliott, Prof Gill Harvey , & Dr Kate Gunn
This study will involve partnering with Local Health Networks (LHN) state-wide to review (audit) case notes and survey in-patients within major South Australian urban and rural public hospitals.
As part of this research, we will speak to in-patients about their current and future care needs and psycho-social well-being, and determine the prevalence of patient awareness of PC and reported conversations about death and dying. We will also review their case notes to see what is recorded about why they attended hospital, any treatment received, and whether any need for and conversations about future and/or end-of-life care is recorded. This will allow us to see where the gaps are between patient and clinical understanding of their care.
Study leads: Prof Gregory Crawford & A/Prof Jaklin Eliott
This world-first longitudinal study will follow, in real-time, patients and their families in the last year of life.
Through conducting regular interviews, we will capture behaviours, experiences and key moments that shape how and why patients and families from under-served communities make end-of-life decisions. We will explore changes over time in expectations and experiences, challenges and benefits, needs, expected futures and factors that may influence a change in experience and/or expectations of palliative care.
Real-time study exploring changes in patients and carers’ expectations, behaviours, experiences and needs regarding palliative care, in under-served communities
Study leads: A/Prof Jaklin Eliott, Prof Gill Harvey , & Dr Kate Gunn
Based on what we find in our research with communities, families, and within hospitals, this study will develop and evaluate a model of the workforce required to deliver best-practice end-of-life care for rural, culturally and linguistically diverse, and those living with a reduced income in communities in South Australia.
In focusing on community needs and preferences, this approach differs from the usual approaches to workforce modelling that focus on the supply of health professionals and/or funding.
Integrating knowledge about the experiences, expectations, and needs of under-served communities gained in our other research activities will enable us to estimate the health workforce required and the competencies and skills needed within healthcare workers responsible for the delivery of palliative care.
This model will inform current and future workforce planning, promoting the delivery of care when, when, and how those in under-served communities want it.
Study leads: Prof Caroline Laurence & A/Prof Ann Dadich
This project will recruit across Australia and use an online questionnaire to collect information about what the things we most value and want in palliative care, both as a (future) patient or (future) carer.
What we learn will help us to make recommendations to advise policy, practice, decision making, and the provision of palliative care across Australia.
Study Leads: Dr Ali Lakhani & Prof Anna Chur-Hansen
A knowledge translation framework will underpin the PCRC research program, to ensure these individual research projects and their outcomes are translated into meaningful and effective change in accessing and delivering end-of-life care and support for South Australians.
The research will be designed, conducted, reviewed, evaluated, and changes implemented through key collaboration and engagement with clinicians, local health networks, community organisations, advisory groups, and other key partners throughout the course of the research program.
Our goal is to deliver meaningful change in policy and practice in end-of-life care so that all South Australians can get the care they want and need at the end of life.
Study Lead: Prof Gill Harvey
Chief Investigators

Lead researcher and Chief Investigator, Palliative Care Research Collaboration
Associate Professor Jaklin Eliott

Professor, Matthew Flinders Fellow, College of Nursing and Health Sciences, Flinders University
Professor Gillian Harvey

Senior Research Fellow, Department of Rural Health, University of South Australia
Dr Kate Gunn

Professor of Palliative Medicine, Adelaide Medical School, University of Adelaide
Professor Gregory Crawford AM

Professor, School of Psychology, University of Adelaide
Professor Anna Chur-Hansen

Professor, School of Public Health, University of Adelaide
Professor Caroline Laurence

Director, Adelaide Rural Clinical School, University of Adelaide
Professor Lucie Walters

Associate Professor, School of Psychology, University of Adelaide
Associate Professor Clemence Due

Western Sydney University School of Business
Associate Professor Ann Dadich

Senior Lecturer, La Trobe University
Dr Ali Lakhani

Lead researcher and Chief Investigator, Palliative Care Research Collaboration
Associate Professor Jaklin Eliott
Jaklin has extensive experience in designing and conducting qualitative research and examining perceptions and experiences of serious illness, palliative care and death and dying.
Jaklin has successfully led a number of transformative research projects and teams, and has published her research across multiple domains, including psychology, public health, palliative care, qualitative research, sociology, bioethics, and clinical ethics.
Her research is a unique contribution to the literature dealing with the social and moral aspects of the experience of terminal illness – particularly with regard to patient / consumer perspectives in the areas of decision-making, advance care planning, hope, Complementary and Alternative Medicine, and death and dying.

Professor, Matthew Flinders Fellow, College of Nursing and Health Sciences, Flinders University
Professor Gillian Harvey
Gill is internationally recognised for her work on knowledge translation, facilitation and implementation in health care.
She has authored 200 publications, including 5 books, and is particularly known for work on a conceptual framework for knowledge translation – the Promoting Action on Research Implementation in Health Services framework (PARIHS) and its most recent revision, the integrated-or i-PARIHS framework.
Originally qualified as a nurse, Gill has worked across academic settings within nursing and healthcare management in the UK and Australia.
In addition to her role as Professor and Matthew Flinders Fellow and theme lead for ‘Better Systems’ in the Caring Futures Institute, Gill is a Co-Director of the Aged Care Partnering Program in the newly established centre Aged care Research and Industry Innovation Australia (ARIIA), Adjunct Professor of Implementation Science at QUT and an Affiliated Researcher at Dalarna University, Sweden

Senior Research Fellow, Department of Rural Health, University of South Australia
Dr Kate Gunn
Kate is a Senior Research Fellow in the Department of Rural Health at the University of South Australia. She is also a registered Clinical Psychologist with experience working with people facing end of life and significant health challenges.
Kate leads a team of researchers who carry out both qualitative and quantitative behavioural science-focused research, focused on understanding rural health care needs and improving access to evidence-based information and care in rural areas.
Kate’s main research interests include farmers’ health and mental health, understanding and addressing the psychosocial needs of rural people affected by cancer, rural help-seeking behaviour and the co-design, sustainable delivery and evaluation of web-based interventions.

Professor of Palliative Medicine, Adelaide Medical School, University of Adelaide
Professor Gregory Crawford AM
Professor Greg Crawford is a Senior Consultant in Palliative Medicine and Director of Research and Education at Northern Adelaide Local Health Network.
He is a Professor of Palliative Medicine in the Adelaide Medical Schoolat the University of Adelaide.
He is a practicing palliative medicine physician and was awarded a Doctor of Medicine by thesis from Flinders University in 2008. His thesis was “Depression in palliative care in Australia: identification and assessment.”
Professor Crawford’s major research activities are into the psychological issues for people and their carers, as the end-of-life approaches, as well as for clinicians.
He has particular interest in not only end-stage cancer, but also the issues for people with non-malignant disease.
He has been a Chief Investigator in two NHMRC projects and currently two MRFF projects and has multiple smaller grants andresearch projects within the clinical and academic areas of palliative care.

Professor, School of Psychology, University of Adelaide
Professor Anna Chur-Hansen
Anna is a Registered Psychologist with Endorsement in Health Psychologyand holds a PhD in Medical Education. She has served numerous leadership roles including Deputy Head and Head of the Discipline of Psychiatry at the University of Adelaide. She most recently served as Head of the School of Psychology.
In 2017 Anna received the National Australian Psychological Society College of Health Psychologists Award for Outstanding Service.
As well as a focus on research in best practice education for health professionals, Anna’s research interests are broadly around food and eating; sex and relationships; physical pain; and death and dying. Much of Anna’s research and teaching is around a biopsychosociocultural framework, and Anna uses qualitative methods in her research, as well as quantitative and mixed methods.

Professor, School of Public Health, University of Adelaide
Professor Caroline Laurence
Caroline is a health services researcher in the School of Public Health at the University of Adelaide. She is a recognised expert in the area of health workforce planning, particularly for the primary care sector.
Her research has contributed to a greater understanding of the workforce pipeline in Australia including career decision making, workforce maldistribution, retention issues and workforce policy analysis.
In 2012, Caroline was a recipient of the highly prestigious ARC Discovery Early Career Researcher Award which was used to develop for the first time in Australia, a needs-based approach to planning the GP workforce in South Australia.
This approach has been applied in Western Australia, the practice nurse workforce and now Palliative care.

Director, Adelaide Rural Clinical School, University of Adelaide
Professor Lucie Walters
Professor Lucie Walters is Director of the Adelaide Rural Clinical School and works as a rural generalist in Mt Gambier.
She is passionate about improving the health outcomes of rural people through the education, training and professional support of rural doctors.
She was instrumental in developing Australia’s reputation for longitudinal integrated clerkships, contributing particularly to Flinders University, Otago University and University of Northern Ontario programs.
Lucie has demonstrated research expertise in the fields of work-integrated learning, adult education pedagogies, rural training pathways and workforce, and more recently rural health service research.
Lucie’s current clinical work is in primary care in the Aboriginal Community Controlled health sector.

Associate Professor, School of Psychology, University of Adelaide
Associate Professor Clemence Due
Clemence is a researcher whose research interests include a focus on the health and wellbeing of individuals and families who are considered to be marginalised or vulnerable.
Her research interests are typically cross-cultural and applied and Clemence works closely with communities to ensure translational outcomes.
Clemence’s research interests include psychological wellbeing, trauma, maternity care and bereavement care following pregnancy or neonatal loss, as well as working with people with asylum seeking, refugee or migrant backgrounds.

Western Sydney University School of Business
Associate Professor Ann Dadich
Ann is an Associate Professor of Human Resources and Management with the Western Sydney University School of Business; she is also a registered psychologist.
Ann’s expertise is health service management–particularly, knowledge translation.
This is demonstrated by: the research grants she has secured; her publishing record; and the awards she has received. Furthermore, she was named in the world’s top 2% scientists in 2021 for her career achievements.

Senior Lecturer, La Trobe University
Dr Ali Lakhani
Ali Lakhani, BBA, MA, MES, PhD is a Senior Lecturer in Public Health with La Trobe University, an Adjunct Senior Research Fellow with The Menzies Health Institute Queensland, Griffith University and an Honorary Palliative Care Researcher with Eastern Health.
He is an interdisciplinary researcher with degrees in business, economics, environmental studies and health promotion and has led studies which utilise spatial, experimental, and cross-sectional and longitudinal observational methodologies.
He has over a decade of experience conducting community-based research focusing on characteristics of high-quality health services, health service access and engagement, and how both are quality of life determinants for ageing adults and people with disability.
He has led Australian Research Council and industry funded research projects which have
(i) investigated the extent of health service use and access for ageing adults with disability and theirassociation with quality of life,
(ii) investigated factors contributing to general practitioner identification and satisfaction for ageing adults with disability,
(iii) clarified the geographic dispersion of palliative medicine professionals for ageing adults with disability within Melbourne priority areas,
(iv) investigated the impact of engaging with natural environments on the psychosocial outcomes of ageing adults and people with disability,
(v) used consensus building methods to investigate the factors contributing to inclusive housing development and community participation for people with a disability and ageing adults,
(vi) clarified the physical and proximate accessibility of health and social services for people who use a mobility aid, and
(vii) investigated end-users perspectives of self-directed funding (including funding under the National Disability Insurance Scheme [NDIS]).
Associate Investigators

Head of Unit, Southern Adelaide Palliative Services, SA Health
Associate Professor Timothy To

Central Adelaide Local Health Network, SA Health
Dr Linda Foreman

La Trobe University
Professor Vijaya Sundararajan

Head of Unit, Southern Adelaide Palliative Services, SA Health
Associate Professor Timothy To
Tim is a specialist in palliative and geriatric medicine.
He is the Head of Unit for the Southern Adelaide Palliative Service, based at Flinders Medical Centre.
Complementing his clinical training, he has been involved in, and published research, in both palliative and geriatric medicine. He is involved in multiple national and state committees. He is a member of the Research Centre for Palliative Care, Death and Dying (RePaDD) at Flinders University.
His research interests include blood transfusions in palliative care, geriatric oncology, health services research and end of life care in acute hospitals.

Central Adelaide Local Health Network, SA Health
Dr Linda Foreman
Dr Linda Foreman is a Palliative Medicine Specialist, based at the Central Adelaide Palliative Care Service.
Prior to completing training in palliative medicine, Linda worked as a GP. She has a keen interest in the integration of palliative care across specialist and community settings, and in supporting general practice.
Linda is also involved in teaching across a range of settings, including with GPs, median students and trainee doctors, and is a Clinical Lecturer with the University of Adelaide. She a member of the Statewide Palliative Care Clinical Network Steering Committee, previously contributed to the General Practice Shared Care Palliative Care Program, and supports Palliative Care SA through involvement with the Board.

La Trobe University
Professor Vijaya Sundararajan
Research Associates

The Hospital Research Foundation Group funded Research Associate
Dr Karen Nobes

The Hospital Research Foundation Group funded Research Associate
Shannen van der Kruk

The Hospital Research Foundation Group funded Research Associate
Dr Georgia Rowley

The Hospital Research Foundation Group funded Research Associate
Dr Karen Nobes
Karen Nobes is a research associate with the Caring Futures Institute and a qualitative researcher specialising in identification of systemic barriers to diversity, equity, and inclusion.
Karen is media and communications specialist with 25 years’ experience in the film and television industries of Australia and Aotearoa/New Zealand, as a documentary director and producer, and as a communications strategist and project manager with government and non-government aid and development organisations in the Pacific Islands and remote communities of the West Kimberley.

The Hospital Research Foundation Group funded Research Associate
Shannen van der Kruk
Shannen van der Kruk is a Dutch health researcher in the Department of Rural Health at the University of South Australia. She has a broad interest in improving the health and well-being of people in the community and contributing to the greater wellbeing of society. Her background is in health sciences (health promotion/public health) and epidemiology. She has carried out both qualitative and quantitative work, and conducted several reviews, both systematic and scoping. Her research is in the area of psychological well-being, rural health, patient education and virtual reality, web-based interventions, and psychosocial needs of people affected by cancer.

The Hospital Research Foundation Group funded Research Associate
Dr Georgia Rowley
Georgia is a qualitative social health researcher with an interest in wellbeing, social determinants of health, health inequities, vulnerable populations, and cross-cultural methodologies. She is interested in lay understandings of health and wellbeing, and the lived experience of major life transitions like death, bereavement and widowhood. She is especially interested in research with groups who have routinely been excluded from mainstream research, particularly culturally and linguistically diverse individuals and refugees, with an emphasis on those who do not speak English or reside rurally.
Guided by a social determinants of health lens, and critical feminist methodology, Georgia’s PhD explored the experience of widowhood and associated wellbeing among older Greek widows and widowers in rural and urban SA. In this study, she conducted qualitative interviews in the Greek language to be inclusive of individuals who had previously not been afforded a voice in academic research, before translating this data to English for wider dissemination.
Higher Degree by Research candidates

University of South Australia - Masters student
Marylouise Freeman

Flinders University - PhD Candidate
Julia Muller Spiti

The University of Adelaide - Masters student
Catherine Ooi

University of South Australia - Masters student
Marylouise Freeman
Marylouise is a registered nurse with over 25 years’ experience working in aged care, disability and community settings. Her breadth of experience ranges from clinical service delivery, quality and project management and operational management in residential facilities. She is a passionate advocate for safe and quality care to support everyone to live their best life.
Throughout her career, Marylouise has had the opportunity to contribute and support the delivery of palliative care services for patients, their family and staff.

Flinders University - PhD Candidate
Julia Muller Spiti
Julia started her career as a registered nurse in one of the largest hospitals in Sao Paulo, Brazil. She has dedicated her professional career to intensive care nursing, particularly in heart and lung surgery. In 2011 Julia moved to Australia with her family. After 12 years of ICU nursing in Australia and overseas, Julia commenced a new career as a lecturer at the University of Adelaide, where she successfully coordinated the Graduate Diploma in Cardiac Nursing for six years.
Julia is passionate about supporting patients and their families during the overwhelming journey they often experience in hospital. She considers it a privilege to care for people in such challenging times. Grief and mourning have been one of Julia’s main areas of interest throughout her career, leading her to complete a Master of Clinical Science, exploring how social media data are used to research the experience of mourning.

The University of Adelaide - Masters student
Catherine Ooi
Catherine Ooi comes from a background of working in community home hospice and is currently enrolled in a Masters of Clinical Science under the supervision of Associate Professors Jaklin Eliott and Clemence Due and Dr Georgia Rowley. She holds an MBA, two Fellowships, and is currently exploring the field of research as a Research Assistant and student.
For the purpose of her masters, Catherine’s research is focused on Death Anxiety, CALD populations and access to palliative care. In her pre-student past life Catherine was Executive Director of a home hospice foundation and served as Vice Chairman of the Malaysian Hospice & Palliative Care Council (MHPCC).
She has had the opportunity of consulting for government and NGO sectors, as well as contributing to the drafting of the National Palliative Care Standards Document and the National Handbook of Palliative Medicine of Malaysia.
Catherine’s palliative care interests are broad ranging and include development and expansion of community palliative services, service operationality, bereavement and spiritual needs of the dying.
Project Manager

Project Manager, Palliative Care Research Collaboration, University of Adelaide
Emily Parker
Emily Parker is the Project Manager for the Palliative Care Research Collaboration research program. She has a background in healthcare, education and medical research, and holds a Bachelor of Medical Radiation (Radiation Therapy) as well as a Graduate Diploma in Education and Project Management qualifications from the University of Sydney. Emily is an experienced Project Manager, having worked on large-scale clinical research projects in oncology and on national health promotion and implementation projects for both the Commonwealth and State Governments. She is also a registered teacher and brings this experience to all facets of her work.
Emily is passionate about translational research and equity in healthcare, and has a particular interest in palliative, end of life care and improving the journey through this important stage of life.