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.
Heng KV, Gringart E.
Abstract: In Australia, voluntary assisted dying (VAD) is now widely legalised, and VAD uptake is on the rise. Thus, the demand for psychological support in the context of VAD is expected to grow. Despite their relevant expertise, psychologists remain underrepresented in end-of-life (EOL) literature and practice. The current in-depth qualitative study examined the perspectives of 20 provisionally registered psychologists in Australia on VAD, using reflexive thematic analysis grounded in social constructionism. Four main themes ('Values', 'Fit-for-Role', 'Exposure', and 'Contributions') and 14 sub-themes were generated from the data. Participants supported availing VAD for terminally ill patients and expressed the potential for its use with dementia sufferers. Nevertheless, participants expressed little interest to engage in VAD care. Participants shared concerns about the high-stakes nature of VAD, the emotional strain of EOL practice, and limited exposure to EOL and VAD. Practical implications and directions for further research are discussed.
MacArthur ND, Kirby E, Mowll J.
Abstract: Ensuring patient and family members' preparedness for dying is a key focus for palliative care. This article draws on the retrospective accounts of bereaved adult family members' experiences of anticipation and preparedness following a death in palliative or residential aged care. Participants completed in-depth interviews (n = 36). A constructivist grounded theory approach guided data collection and analysis, through which the complexities of engaging in preparedness whilst navigating questions of how to care well emerged. We propose the concept of anticipation fatigue as a means by which to understand the impacts of holding multiple, sometimes contradictory, positions in the pursuit of 'good' care at end of life. These results deepen our understandings of the impacts of caring-in-anticipation and offer insights for improving support to families receiving palliative care.
Merrington H, Mahimbo A, DiGiacomo M, Roxas-Harris B, Agar MR, Nathan S, et al.
Background: Refugees experience barriers to health care after resettlement and may have distinct palliative care needs. There is no systematic guidance to support person-centred palliative care services that are responsive to refugees' needs and preferences.
Aim: To synthesis evidence regarding factors enhancing the wellbeing of refugees with advanced life-limiting illness, and their families, to inform palliative care in high-income resettlement countries.
Design: A systematic review of primary research studies. We applied a strength-based assets framework to the data extraction and synthesis and conducted a directed content analysis.
Results: Ten of the 1006 studies identified were included in the review: two qualitative, one quantitative and seven case studies. We identified 17 assets that enhanced refugees' wellbeing: resilience, religion, spirituality, sense of identity, belonging, community connections, health and death literacy, acculturation, family and social support, social capital, community structures, access to funeral information, access to services, palliative care service approaches, and workforce capacity. Resilience was linked to identity and belonging, connections within cultural and religious networks, social capital and creating meaningful funeral rituals in resettlement. Palliative care workforce capacity, death literacy, acculturation, refugees' grief experiences and willingness to discuss and plan for death, influenced refugees' attitudes to palliative care, communication with staff about treatment, prognosis and spiritual care, and care outcomes.
Conclusions: Further research, co-designed with diverse refugee groups, is needed to inform palliative care service approaches, develop interventions to strengthen key assets and explore the nuanced role of social capital in end-of-life care.
Puranam S, Disalvo D, Giannitrapani K, Lorenz K, Mickelsen J, DeNatale M, et al.
Background: In 2021, the Palliative Care - Promoting and Improving Clinical Excellence (PC-PAICE) collaborative was adapted in Australia after an initial run in India. PC-PAICE partners global experts with local palliative care centers to improve care by fostering quality improvement (QI) capacity.
Intervention: PC-PAICE is a guided QI and mentorship curriculum delivered to interdisciplinary teams working on a relevant project, and each team develops salient project measures. The program has been offered to three Australian cohorts and has trained participants to mentor subsequent participants to build local QI capacity.
Outcomes: Qualitative evaluation has shown teams tackled specific and immediate challenges facing their clinics that were not otherwise recognized without increasing overall work burden. Teams have presented their projects at conferences, and a number have published their work in journals.
Conclusion/ lessons learned: PC-PAICE is uniquely suited to improving palliative care via equitable global partnerships among diverse practitioners. Given its promise, the team is planning to implement the model more widely.
Singh GK, Virdun C, Rattray M, Prichard R, Wynne R.
Background: Optimal palliative care requires a correct assessment of needs. Nurses are well-placed to undertake this task, but the effectiveness of nurse-led palliative care needs assessment remains uncertain.
Aim: To evaluate the evidence regarding the impact of nurse-led palliative care needs assessment on adult patients with oncological and non-oncological illnesses quality of life, symptom burden and hospitalisations.
Design: Systematic review. The review was registered on the international Prospective Register of Systematic Reviews (PROSPERO) (registration number CRD42023429259).
Data sources: Databases searched were CINAHL, PubMed, Embase, and MEDLINE from inception to April 2024.
Methods: A systematic review of English language, randomised controlled trials, conducted in May 2023, and updated in April 2024, on the impact of nurse-led palliative care needs assessment was undertaken. Two independent reviewers screened papers, and two reviewers independently conducted data extraction and risk of bias assessment using the Cochrane Risk of Bias 2 tool. The data were analysed using a narrative synthesis approach by combining studies according to the outcomes of interest.
Results: Six trials were included, involving oncological patients (n = 4), non-oncological patients (n = 1) and deceased aged-care residents (n = 1). Two studies had 'low' risk of bias, two had 'some concerns,' and two had 'high concerns.' There was heterogeneity in the needs assessment tools used and the outcome measures assessed. Researchers who conducted a nurse-led and social worker-led trial in non-oncological patients demonstrated statistically significant improvements in patient quality-of-life and symptom burden. Researchers in two trials found no difference, and two others reported statistically non-significant improvements in quality of life and symptom burden. One group of researchers found no difference in hospitalisations at 6 months. No studies evaluated the inpatient length of stay.
Conclusion: There is a paucity of high-quality evidence on the effectiveness of nurse-led palliative care needs assessments. Future researchers must identify what level of needs predicts poor quality of life, assess interventions tailored to local contexts, and determine how best to evaluate their impact using clinically relevant outcome measures.
Last updated 30 April 2024