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.

10 October 2024

Creutzfeldt-jakob disease: From presentation to palliative care.

Scott D, Solvyns S, Ralston D, Hely MA.

No Abstract.

10 October 2024

Models of care for voluntary assisted dying: A qualitative study of Queensland's approach in its first year of operation.

White BP, Ward A, Feeney R, Ley Greaves L, Willmott L. 

Objective: Voluntary assisted dying (VAD) began in Queensland in January 2023 but little is known about its practical operation. This research examined models of care for providing VAD in Queensland.MethodsSemi-structured interviews were conducted with 24 participants involved with VAD delivery across Queensland's 16 Health and Hospital Services (HHSs). Participants included HHS VAD Coordinators, nurse practitioners and nurses who acted as administering practitioners, and Queensland VAD Support and Pharmacy Service (QVAD SPS) staff.

Results: Five themes about Queensland VAD models of care were developed: VAD is accessed almost exclusively through the public sector via HHSs, influenced by a Health Service Directive; local models of care vary; nurses play significant roles facilitating access to and providing VAD; QVAD SPS has been instrumental supporting HHSs and ensuring statewide access as back-up VAD provider; and VAD services need more resourcing.ConclusionsThe Queensland approach to providing VAD has been largely successful in ensuring patient access across the state. However, it differs from previous Australian VAD models with access predominantly through the public sector, greater roles played by nurse practitioners/nurses, and VAD being provided by QVAD SPS. Under-resourcing and consistency in provision of VAD services remain challenges.

3 October 2024

A role for event centrality in prolonged grief disorder.

Brookman R, Harris CB, O'Connor M.

Abstract: Having a traumatic or negative event at the centre of one's identity is associated with adverse psychological outcomes including post-traumatic stress, depression, and prolonged grief disorder (PGD). However, direct investigation of the role of centrality of a bereavement-event in the maintenance of PGD symptoms is scarce and has not compared immediate and long-term changes in event centrality nor examined the nature of the loss. Data from bereaved partners and adult children in The Aarhus Bereavement Study at four time points over 26 months post-loss were included in this study. Participants completed a PGD symptom measure and the Centrality of Events Scale (CES) on each occasion. Results suggest that bereaved partners had higher PGD and CES scores than bereaved adult children at all four post-bereavement time points. Regardless of relationship type, maintaining higher CES scores over time predicted PGD symptoms, over and above initial symptoms. Our findings suggest a risk factor for maintaining PGD symptoms is the continued centrality of the bereavement to ones' life story and autobiographical memory. This finding links the mechanisms for maintaining PGD symptoms to those involved in other disorders such as post-traumatic stress, with implications for theoretical models of prolonged grief as well as treatment.

3 October 2024

Supportive care 2030 movement: Towards unifying ambitions for global excellence in supportive cancer care-an international Delphi study.

Chan RJ, Knowles R, Ashbury FD, Bowen J, Chan A, Chin M, et al.

Background: Supportive care to ensure optimal quality of life is an essential component of cancer care and symptom control across the lifespan. Ongoing advances in cancer treatment, increasing toxicity from many novel treatment regimes, and variations in access to care and cancer outcomes across the globe and resource settings present significant challenges for supportive care delivery. To date, no overarching framework has been developed to guide supportive care development worldwide. As an initial step of the Multinational Association of Supportive Care in Cancer (MASCC) Supportive Care 2030 Movement, we developed a targeted, unifying set of ambition statements to envision the future of supportive cancer care.

Methods: From September 2022 until June 2023, we used a modified Delphi methodology to develop and attain consensus about ambition statements related to supportive cancer care. Leaders of MASCC Study Groups were invited to participate in an Expert Panel for the first two Delphi rounds (and a preliminary round to suggest potential ambition statements). Patient Advocates then examined and provided input regarding the ambition statements.

Findings: Twenty-seven Expert Panelists and 11 Patient Advocates participated. Consensus was attained on 13 ambition statements, with two sub-statements. The ambition statements addressed global standards for guideline development and implementation, coordinated and individualized care, dedicated supportive oncology services, self-management, needs for screening and actions, patient education, behavioral support, financial impact minimization, comprehensive survivorship care, and timely palliative care, reflecting collaboration, coordination and team-based approach across all levels.

Interpretation: This study is the first to develop shared ambitions for the future of supportive cancer care on a global level. These ambition statements can facilitate a coordinated, resource-stratified, and person-centered approach and inform research, education, clinical services, and policy efforts.

Funding: This project received funding support from Prof Raymond Chan's NHMRC Investigator Grant (APP1194051).

Crown Copyright © 2024 Published by Elsevier Ltd.

3 October 2024

Attitudes and experiences of community palliative care nurses regarding pediatric home-based end-of-life care: A statewide survey.

Helyar M, Eamens M, Coombs S, Smeal T, Mherekumombe M, Jaaniste T.

Objectives: Pediatric end-of-life (EOL) care at home is often provided by community palliative care (CPC) nurses who do not specialize in pediatrics. This study aimed to better understand the challenges CPC nurses face when providing EOL care to children at home.

Methods: A total of 52 CPC nurses across New South Wales (NSW), Australia, participated in an online survey about their training, attitudes, and experiences regarding the provision of home-based pediatric EOL care. Participants were asked to reflect back over a "negative" experience of caring for a child at EOL, where things did not go as well as hoped, and a "positive" EOL care experience, where nurses perceived that care of the child and family went well, and respond to questions about these experiences.

Results: Confidence of CPC nurses when providing EOL care to pediatric patients was significantly lower than when caring for adults (p's < .05). Most respondents expressed the desire for more training in pediatric EOL care. Cases identified as negative by CPC nurses did not significantly differ from positive cases in terms of the timing of the referral to CPC, clinical symptoms at EOL, or how well informed the nurses felt. Siblings were present at EOL in 74% of the negative experiences and 86% of the positive experiences, reportedly receiving significantly poorer support in the negative experiences (= .002). 

Conclusion: This research contributes to an improved understanding of the challenges associated with home-based pediatric EOL care and highlights potential areas for improvement in CPC service delivery and training.

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Last updated 30 April 2024