Find out what Australian researchers are publishing in palliative care 

The following lists palliative care research primarily conducted by Australian research groups. The list is based on application of the CareSearch search filter for palliative care to identify articles held within the PubMed database and corresponding to the strongest evidence. Articles have been selected based on relevance and new articles are added on a weekly basis.

Whilst not an exhaustive list, the aim is to keep the community informed by providing a snapshot of recent research findings and planned studies in the Australian setting.

11 November 2024

'Technology in end-of-life care is very important': the view of nurses regarding technology and end-of-life care

Vandersman P, Tieman J.

Background: Globally, digital transformation has been sweeping through healthcare in recent years. Reflecting this global change, Australia's health and social care sector is also undergoing rapid digitalisation. Digital approaches can enhance care planning and coordination activities, as well as improve efficiencies in documentation and coordination of care. As the aged care environment continues to become digitalised into the future, there is an expectation that nurses practise the delicate art and science of compassionate caregiving in a technology-proliferated environment where care planning, provisioning, and documenting require digital knowledge and skills.

Aim: To explore the perspectives and expectations of nurses working in residential aged care setting regarding the utilisation of technology to enhance care at the end-of-life.

Methods: A qualitative descriptive research study design based on the secondary analysis of data collected as part of a larger study. Data collection was conducted using six semi-structured interviews and 11 focus group discussions with care workers, nurses, and nursing managers working in Australian residential aged care setting.

Results: A total of 64 participants took part in this study. Overall, four themes were generated from the data as following: engagement with various digital systems and platforms; 2) ambivalence toward technology; 3) challenges and concerns in technology use; and 4) anticipated technology roles in end-of-life care. This study found that, nurses in Australian RAC are open to engage with technologies for end-of-life provision, despite some ambivalence and challenges encountered in the process.

Conclusion: Nurses in residential aged care have an important role in end-of-life care of many older Australians. Digital approaches offer care and coordination opportunities however require the aged care sector and nurses to take up these opportunities. While nurses demonstrate openness to technology, focus needs to be placed on technology use support. This presents an opportunity for nurses to actively shape the future of digital innovations in aged care, ensuring high-quality, compassionate care for residents in their final stages of life.

11 November 2024

The experiences of rural generalist occupational therapists in provision of palliative care in rural, regional, and remote Australia: A phenomenological inquiry

Oxley I, Lowrie D.

Introduction: Access to specialist palliative care in rural and remote Australia is limited, resulting in a reliance on generalist health professionals to provide these services. Although literature exists concerning the experiences of some health professions in providing rural generalist palliative care, little is known about the experiences of occupational therapists who fill these roles. This paper aims to address this gap in knowledge by exploring the experiences of rural generalist occupational therapists in the provision of palliative care in rural, regional, and remote Australia.

Methods: An interpretive phenomenological approach guided this research. Data were collected from eight rural generalist occupational therapists across Australia, using semi-structured, in-depth interviews. Data were thematically analysed to develop a nuanced understanding of lived experience in provision of palliative care.

Consumer and community involvement: Due to the focus of this research on the practice experiences of occupational therapists, consumer and/or community involvement was not undertaken in its design or implementation.

Findings: Three key themes were identified: 'community connections - a double-edged sword'; 'frustrations with structural and contextual factors limiting quality palliative care service provision'; and 'education and support as enablers of professional preparedness for palliative care service provision.' Taken collectively, these findings shed light on a variety of challenges and opportunities associated with rural generalist palliative care occupational therapy practice, as well as clues to their effective management.

Conclusion: Knowledge of rural generalist occupational therapists' experiences can inform workforce development, promote retention of rural occupational therapists, and improve outcomes for dying persons, their families and caregivers. This study offers new insights into challenges and opportunities for rural generalist occupational therapy practice in palliative care and highlights the way in which both, new and existing support structures may be of value in promoting practice capacity and therapist wellbeing.

Plain language summary: It can be hard to get expert support for dying people in areas outside of cities in Australia. Health workers in these areas should be helped to provide good care. In this study, we spoke with some health workers in rural and remote areas who occasionally work with people who are dying. They told us that people in these areas were often helpful in supporting people who are dying because they felt close to them. But they also said that this made caring sadder for health workers because, sometimes, they were close to the people who were dying too. Having too much work, not enough experience and long distances made providing good care extra difficult. The health workers said that getting expert advice or using online teaching could help them improve their practice, but finding the time to do this is hard.

11 November 2024

Engaging with Culturally and Linguistically Diverse Communities to Promote Palliative Care That Exceeds Expectation

Dadich A, Crawford G, Laintoll P, Zangre I, Dahal K, Albrezi D, et al.

Introduction: Given longstanding barriers that obstruct integrated palliative care, particularly for culturally and linguistically diverse communities, this article demonstrates a way to engage with Syrian, Bhutanese and African communities to learn about brilliant palliative care with and from members of these communities.

Methods: This study involved the methodology of POSH-VRE, which combines positive organisational scholarship in healthcare (POSH) with video-reflexive ethnography (VRE). Members of the Syrian, Bhutanese, and African communities (n = 14) participated in a focus group or an interview to consider understandings of palliative care; conceptualisations of a good death; how and why palliative care was typically enacted in their communities; the associated effects; as well as the relationship between culturally and linguistically diverse communities and public palliative care services. Discussions were aided by video recordings captured during the previous study on brilliant palliative care, which participants were invited to review. Video recordings and transcripts of the focus groups and interview were analysed using reflexive thematic analysis.

Results: The participants demonstrated considerable variability in the ways that palliative care was understood and enacted. For some, death was a taboo topic, while for others, it was a reality that was required to face, particularly in war-torn regions. Similarly, while doctors were held in high regard, participants held different views about how they should enact palliative care and the anticipation of death, particularly because family members were deemed to be a pivotal part of palliative care. To improve the care of people of culturally and linguistically diverse communities who experience a life-limiting illness, participants highlighted three opportunities. These included the avoidance of generalisations, prioritising the needs and preferences of cultural groups, and leveraging the community network.

Conclusion: This study demonstrated how reciprocal understandings of palliative care were potentiated using POSH-VRE. Specifically, the members of the Bhutanese, African and Syrian communities demonstrated diversity in the needs, preferences, and customs of culturally and linguistically diverse communities. As such, integrated palliative care is likely to be bolstered by relinquishing assumptions about how cultural groups wish to be referred to and cared for and adopting a public health approach to palliative care that embraces both a population-based and person-centred approach to care.

Patient or public contribution: Members of the Bhutanese, African and Syrian communities contributed to this study as participants and co-researchers, contributing to the analysis and interpretation of the data and in the preparation of the article.

11 November 2024

Health professionals' and caregivers' perspectives on improving paramedics' provision of palliative care in Australian communities: a qualitative study

Juhrmann M, Butow P, Platts C, Boughey M, Simpson P, Clayton JM.

Objectives: Paramedics have the potential to make a substantial contribution to community-based palliative care provision. However, they are hindered by a lack of policy and institutional support, as well as targeted education and training. This study aimed to elicit paramedics', palliative care doctors' and nurses', general practitioners', residential aged care nurses' and bereaved families and carers' attitudes and perspectives on how palliative paramedicine can be improved to better suit the needs of community-based patients, their families and carers, and the clinicians involved in delivering the care.

Design: In this qualitative study underpinned by a social constructivist epistemology, semistructured interviews were conducted.

Setting and participants: 50 participants with palliative paramedicine experience, from all jurisdictions of Australia. Participants were interviewed between November 2021 and April 2022.

Results: All participants suggested paramedics play an important adjunct role in the provision of palliative and end-of-life care in home-based settings. Three levels of opportunities for improvement were identified: macrolevel (policy and frameworks; funding and education; accessing medical records and a widening scope); mesolevel (service-level training; interprofessional understanding and communities of practice and community expectations) and microlevel (palliative care subspecialty; debriefing and self-care and partnering with families).

Conclusion: To enhance paramedic capacity to provide palliative care support, improvements targeting systems, services, communities and individuals should be made. This calls for stronger inclusion of paramedicine in interdisciplinary palliative care and greater investment in both the generalist and specialist palliative paramedicine workforce.

4 November 2024

Increasing the uptake of advance care directives through staff education and one-on-one support for people facing end-of-life.

Kinsman LD, Mooney G, Whiteford G, Lower T, Hobbs M, Morris B, et al.

Background: An advance care plan outlines a patient's wishes regarding medical treatment or goals of care in the case that they become unable to communicate or to make decisions. An advance care directive (ACD) is an advance care plan that has been formally recorded and has legal status. Despite ACDs playing an important role in person-centred end-of-life care, an earlier retrospective medical records audit demonstrated that only 11% (58/531) of people who died due to a terminal illness had an ACD.The aim of this project was to increase the proportion of patients with a terminal illness completing an ACD. A secondary outcome was to measure the impact of ACDs on hospital and intensive care unit (ICU) admissions in the last 6 months of life.This multifaceted project comprised (1) education for health professionals and the public; (2) individual support for patients on request; (3) development of online resources for health professionals and the general public; and (4) monthly team meetings.

Method: The proportion of ACDs completed and hospital and ICU admissions during the last 6 months of life, were extracted via medical record audits.Written consent was required for patients to participate, including being contacted by the project team and accessing their medical records.

Results: 112 patients consented to participate in the project and 109 (97%) completed an ACD. There was no reduction in the average number of hospital admissions, while ICU admissions reduced from 14% (n=74) to 0%.

Conclusion: The targeted, multifaceted approach to education and support for completion of ACDs, resulted in a significant increase in ACD completion and a major reduction in ICU admissions.

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Last updated 30 April 2024