Partnerships & projects - Flinders University

Major projects and networks

RePaDD researchers work in major national palliative care projects and professional organisations.

We are currently formally in partnership or consortium arrangements with health, research, advocacy, and professional organisations.

Our research

Palliative care across the system

Currently recruiting - Exploring perceptions of allied health role in palliative and end of life care

Project Ethics: This project has been approved by Flinders University's Human Research Ethics Committee (Project ID 7464).

Purpose of the Study:
This study aims to explore how allied health professionals work with older adults receiving palliative care and at end of life, in Australia; what unique input the various disciplines can offer, and what learning or professional development informs clinical practice.

Who can be involved:
We would like to invite allied health clinicians or allied health tertiary educators from these 4 professions - Dietitians, Occupational Therapists, Physiotherapists, Speech Pathologists - to participate in the study. We are seeking individuals with experience working in aged care settings (Residential Aged Care Facility or Community setting), who have encountered older adults receiving palliative or end of life care.

What you will be asked to do:
If you would like to participate in this research, we invite you to register your interest to participate in a 30-45 minute online Microsoft Teams interview where we will ask you about your experience as an allied health clinician or educator with specific reference to working in palliative and end of life care for older adults. In appreciation of your time, you will be provided with a $25 gift card for helping us with the interview, and we will be looking to conduct up to 12 interviews in total, and representation from each discipline.

How you can participate:
If you feel that you could contribute to this important study, and would like to register to participate, you can register your details below and the project team will be in touch shortly.

Register your interest

Rapid review of the literature: End-of-life care

The Australian Commission on Safety and Quality in Health Care engaged Flinders University’s Research Centre for Palliative Care, Death and Dying to undertake a rapid review of the literature to provide an update of the current evidence base that could inform a revision of the National Consensus Statement: Essential elements for safe, high-quality end-of-life care.

Researchers: Ms Deb Rawlings, Assoc Prof Kim Devery, Prof Jennifer Tieman, Mr Paul Tait, Dr Amal Chakraborty

Funding: Australian Commission on Safety and Quality in Health Care

Research Products: Rawlings D, Devery K, Tieman J, Tait P, Chakraborty A. Rapid review of the literature on end-of-life care. Sydney: ACSQHC; 2021.

Mapping Occupational Therapy Prescription of Assistive Equipment for People with Palliative Care Needs

The introduction of My Aged Care and the National Disability Insurance Scheme has led to inequitable access to assistive equipment to optimise client function, anecdotally leading to hospital readmissions and occupational therapy service duplication.

To help address this, we will map the occupational therapy outcomes of clients referred to the Central Adelaide Palliative Care Service of the Central Adelaide Local Health Network. We will likewise examine client and carer experiences of accessing and using assistive equipment to optimise function under the different healthcare funding streams.

Researchers: Dr Deidre Morgan, Dr Lauren Gee, Dr David Holden, Mr Mark Waters, and Dr Monika Seebok

Funding: Flinders University Innovation Partnership Seed Grant and SA Health Allied and Scientific Health Office

Feasibility Study for the Novel Approach to the Delivery of Breakthrough Analgesics in Palliative Care

Pain at the end of life can be a significant issue and there are many factors which can impede adequate pain management. Our project will start with a critical review of the literature around authorised agent-controlled analgesia in palliative care.
A feasibility trial in Southern Adelaide Palliative Care Service will then examine novel approaches to the delivery of breakthrough analgesics.

Researchers: Dr Caroline Phelan, Dr Michael Briffa, Ms Kate Swetenham, and Ms Helen Walker

Funding: The Hospital Research Foundation

Development of an End of Life Literacy Management Scale (ELLMS) Instrument for Aged Care

No validated instrument currently exists which can systematically measure or monitor the end of life (EOL) literacy of an individual to seek, understand, and use EOL health information within the aged care setting at a population or workforce level.

We are developing an ELLMS instrument to enable quantification of whole-of-system capacity and allow for standardised benchmarking of the efficacy of new aged care interventions and changes.

Researchers: Dr Kelly Jones, Prof Deb Parker, Ms Kate Swetenham, and Prof Jennifer Tieman

Funding: Flinders University College of Nursing and Health Sciences Establishment Grant

CareSearch Portal Redevelopment – Digital Translation

Health information is readily available online but the effectiveness of dissemination and translation forms is not well understood. Our research will start with a review of analytics and digital translation theories.

We will develop a theoretical framework that assesses the relative effectiveness of formats, messaging, and audience responses using validated metrics. Comparative studies will then be undertaken.

Researchers: Prof Jennifer Tieman and Dr Katrina Erny-Albrecht

Funding: Department of Health and Aged Care

CareSearch Portal Redevelopment – Addressing the Information Needs of Diverse Populations

CareSearch Portal Redevelopment – Addressing the Information Needs of Diverse Populations

Australia has a diverse population and this affects perceptions around death and dying, as well as their equity and access to person-centred care.

We will examine the information needs of diverse population groups and the mechanism by which these can be effectively provided. We will:

Conduct a rapid review of approaches to care provision for people across the population
Work with community members and health professionals to develop a set of content and resources to support those with palliative care needs
Undertake user testing and formal evaluation

Researchers: Prof Jennifer Tieman and Dr Katrina Erny-Albrecht

Funding: Department of Health and Aged Care

Death and dying across the community

The Role of Death Doulas in End-of-Life Care

Current health and social care systems do not always meet the needs of the dying in our communities. From these gaps, the Death Doula role has emerged in the end‐of‐life care space and the aim of our research is to investigate this new role.

A systematic review, survey of death doulas, and subsequent interviews have been undertaken to date and published. Work started in 2017 and is continuing with surveys of health professionals and Dying2Learn participants. Interviews with families and education providers are also planned.

Researchers: Ms Deb Rawlings, Prof Jennifer Tieman, Dr Lauren Miller-Lewis, and Ms Kate Swetenham

Mapping of Online Evidence-Based Bereavement Resources

Our research will map online national and international evidence-based resources, including risk assessment tools to support assessment and management of bereavement.

It will include a rapid literature review and an environmental scan of evidence-based tools, resources, services, and supports. Results will be used to develop an evidence-based online bereavement portal.

Researchers: Professor Jennifer Tieman, Ms Kate Swetenham, Ms Raechel Damarell

Funding: SA Health

The Information Needs and Perspectives of Family and Professional Caregivers on Grief, Loss, and Bereavement Support in South Australian Residential Aged Care

Our research examined the understanding, experiences, and information needs of families and professional caregivers of older persons in residential aged care with respect to grief, loss, and bereavement.

We interviewed family members, persons who have a family member currently living in residential aged care, and staff members of residential aged care services (professional caregivers, managers, and palliative care providers) through focus groups and one-on-one interviews. Based on the interview findings and the findings of the associated systematic review, we produced a booklet on grief and bereavement for use in residential aged care. An electronic copy of the bereavement booklet is available to download.

Researchers: Prof Jennifer Tieman, Dr Priyanka Vandersman, Dr Amal Chakraborty, and Dr Georgia Rowley

Funding: SA Health

Research Products: When someone dies in residential aged care: Grief and loss for families (PDF)

Supporting the Grief, Loss, and Bereavement Needs of Families of Older People Living in Residential Aged Care: A Systematic Review

Our study aimed to identify grief, loss and bereavement-related information and support needs of bereaved family member, or family members and carers of older people in the last year of life who are entering or living in residential aged care.

The study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines utilising scientific peer reviewed journal articles retrieved through searches in MEDLINE, Scopus, CINAHL (EBSCO), PsycINFO (Ovid), ProQuest and PubMed. The review identified nine key themes across five caregiving trajectories, including preplacement, transitioning, currently living, end-of-life care, and after death. Based on the findings of the systematic review and the findings of an associated interview study of families and aged care staff, we produced a booklet on grief and bereavement for use in residential aged care. An electronic copy of the bereavement booklet is available to download.

Researchers: Prof Jennifer Tieman, Dr Priyanka Vandersman, and Dr Amal Chakraborty

Funding: SA Health

Research Products: When someone dies in residential aged care: Grief and loss for families (PDF)

Optimising the Toileting Capacity of People with Advanced Cancer as Function Declines

Dependency with intimate hygiene was identified as a significant and under-researched issue in a previous study funded by Occupational Therapy Australia.

Our multicentre prospective observational cohort study seeks to identify the prevalence and types of task performance difficulties experienced in toileting in patients with advanced cancer.

It will also identify the components of and prevalence of occupational therapy rehabilitation interventions that optimise the toileting ability. The feasibility and acceptability of study protocol will be tested using a custom designed screening tool and semi-structured interviews with participants (patients and carers) for data collection.

Researchers: Dr Deidre Morgan, Ms Celia Marston, and Ms Caroline Litster

Expanding the Reach and Impact of CarerHelp: Enabling Underserved Family Carers and Support Workers to Care for a Person with an Advanced Disease

Description: This study will explore how to support carers of people with advance disease from structurally vulnerable populations. The work will include a scoping study, environmental scan, and interviews.

These findings will inform the development of new content and a directory of resources for the CarerHelp website.

Researchers: Prof Jennifer Tieman, Prof Mark Boughey, and Dr Kristina Thomas

Funding: St Vincent’s Hospital Melbourne

Dying2Learn 2020 Studies

Dying2Learn was an innovative online course developed by the CareSearch project. We ran the course four times in 2016, 2017, 2018 and 2020. It aimed to help Australians feel more comfortable talking about death and dying. We achieved this by exploring different perspectives around death and dying, specifically:

How we engage with death and dying, what language to we use and how do we remember people who have died
Representations of death and dying in art, on books, in films and on TV
What will we die of, how will we die, and what is medicine doing about death
Dying in a digital age and how do we use technology to find things and share things and when grieving

Data analysis will explore changes in attitudes to death and dying, linguistic sentiment, and perspectives around online mourning.

Researchers: Prof Jennifer Tieman, Ms Deb Rawlings, Dr Laura Miller Lewis, Dr Christine Sanderson, and Prof Deb Parker

Funding: Department of Health and Aged Care

Research Products:

Dying2Learn 2020 booklet (PDF)
Miller-Lewis LR, Lewis TW, Tieman J, Rawlings D, Parker D, Sanderson CR (2021) Words describing feelings about death: A comparison of sentiment for self and others and changes over time. PLoS ONE 16(1):e0242848. https://doi.org/10.1371/journal.pone.0242848

Digital and online translation

Development and Evaluation of an Aged Care Worker App

Our study will report the development and evaluation of a palliative care app designed for care workers working in the Australian aged care setting. It will consist of:

a. Phase I: Focus group/interview with stakeholders to identify care workers’ scope of practice and their app-related needs,

b. Phase II: Technical development and usability testing of the care worker app, and

c. Phase II: Evaluation, where care workers will be invited to use the newly developed app for few weeks, and will be interviewed at the end of the use period to explore their experience and perspectives.

Researchers: Dr Priyanka Vandersman and Prof Jennifer Tieman

Funding: Department of Health and Aged Care

Is There an App for That? A Scoping Review of Apps for Aged Care Workers

Our study identified and reviewed apps that could be used by care workers to help them plan and provide palliative care in the aged and community care setting.

Searches were conducted in App Store and Google Play to identify apps relevant to care workers in the context of palliative and end of life care provision. Eight apps met the eligibility criteria.

The findings suggested that currently available care worker apps have limited functionality and scope in relation to palliative and end-of-life care. There is a need to build an evidence-based and co-designed care-worker app that offers high level relevance to the end users.

Researchers: Dr Priyanka Vandersman, Dr Lua Perimal-Lewis, and Prof Jennifer Tieman

Funding: Department of Health and Aged Care

The ELDAC Digital Dashboard Implementation Study

Our study aims to evaluate the merit and acceptability of a palliative care digital dashboard in the Australian aged care setting. Residential and home care services who have access to the integrated ELDAC digital dashboard (within their clinical IT system) were eligible to participate.

A tailored implementation support package was offered to each site and asked to use the dashboard for up to eight weeks. Focus group data is planned to be collected at the beginning and end of the eight-week dashboard use period.

Researchers: Prof Jennifer Tieman, Dr Priyanka Vandersman, Prof Anthony Maeder, and Mr Martyn George

Funding: Department of Health and Aged Care

Online Self-care Tool

Caring for others, particularly those at the end of life, can be challenging for the aged care workforce. Ensuring their own self-care is thus important.

We are developing an interactive online self-care tool specifically for the aged care workforce. This tool will allow aged care workers to identify their self-care needs and provide interactive and practical tips and resources to address those needs.

Researcher: Prof Jennifer Tieman

Funding: Department of Health and Aged Care

Finding Australian Palliative Care and Aged Care Projects, Research, and Resources

Our project aims to build a national database of palliative care projects conducted (in the past and present) in Australia. Users will be able to search for through various filters such as advance care planning, bereavement, or tools.

This searchable database is expected to be valuable for a range of users including funding agencies, policymakers, health services, managers, clinicians, researchers, and medical devices/technology sector.

Researchers: Prof Jennifer Tieman, Prof Anthony Maeder, Mr Martyn George

Funding: Department of Health and Aged Care

Home Care Search Filter

Many people find searching for research articles difficult. For a new area such as home care, finding information is harder because there are not commonly used search terms to help retrieve relevant literature.

We will develop a validated search filter on home care. We will then use this filter and combine it with a range of other topic searches such as dementia or family.

These searches will be stored as a hyperlink so users will be able to click on their preferred search and results will load to PubMed and display the relevant articles in this health and aged care database.

Researchers: Prof Jennifer Tieman and Ms Raechel Damarell

Funding: Department of Health and Aged Care

Integrated Care Search: Development and Validation of a PubMed Search Filter for Retrieving the Integrated Care Research Evidence

There are growing efforts internationally to develop integrated models of care to address the many safety, quality, and cost-effectiveness concerns embodied in the prevailing ‘single disease’ approach of healthcare systems.

Finding research literature on the topic of integrated care, however, is notoriously challenging due to the concept being multidimensional and lacking a universally understood definition, and yet researchers, policy makers and clinicians need such access if they are to be aware of the growing evidence what works.

We developed a tool called Integrated Care Search (ICS) which enables PubMed searches on integrated care and related topics, such as palliative care, at the simple click of a hyperlink.

Researchers: Prof Jennifer Tieman and Ms Raechel Damarell