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.

27 September 2024

Progressing the death literacy index: The development of a revised version (dli-r) and a short format (dli-9).

Noonan K, Grindrod A, Shrestha S, Lee S, Leonard R, Johansson T. 

Background: Since the development of the Death Literacy Index (DLI) in 2019 in Australia, subsequent internationally validated versions have prompted rewording and refinement of the original survey questions. Use of the DLI in the community has also resulted in requests for a short format.

Objectives: To examine and report on the psychometric properties of a revised version of the DLI-R and develop a short format DLI-9.

Design: A cross-sectional national survey was conducted for the validation of the revised DLI.

Methods: The DLI items were revised by the research team using the international literature. DLI data were collected from a representative online non-probability panel of 1202 Australian adults, based on age, gender, and geographical location. Confirmatory factor analysis (CFA) was conducted to ensure the revised version (DLI-R) was consistent with the original. To develop a short format version of the DLI (DLI-9), items were first removed based on face validity, followed by an exploratory factor analysis (EFA) and CFA. The internal reliability of the DLI-R and the DLI-9 was assessed using Cronbach's alpha. The intraclass correlation coefficient was calculated to examine the inter-rater reliability between the DLI-R and DLI-9.

Results: Twenty-four questions in the DLI were reworded for clarity. A CFA on the 29 items of this modified version of the DLI indicated a good model fit (Tucker-Lewis Index (TLI): 0.93; Comparative Fit Index (CFI): 0.93; root mean square of approximation (RMSEA): 0.06; standardized root mean residual (SRMR): 0.06), with six latent variables and an underlying latent variable "death literacy." For the DLI-9, an EFA identified a nine-item, two-factor structure model (DLI-9). A subsequent CFA in a separate sample demonstrated a good model fit for the DLI-9 (TLI: 0.92; CFI: 0.94; RMSEA: 0.089; SRMR: 0.07). Excellent inter-rater reliability (0.98) was observed between DLI-9 and DLI-R. Cronbach's alpha coefficients for DLI-R scales and subscales and the DLI-9 all exceeded 0.8, indicating high internal consistency.

Conclusion: The DLI-R and the DLI-9 were found to have acceptable psychometric properties. The development of a shorter version of the DLI provides a valid measure of overall death literacy.

© The Author(s), 2024.

27 September 2024

Bereavement guilt among young adults impacted by caregivers' cancer: Associations with attachment style, experiential avoidance, and psychological flexibility.

Stone M, McDonald FEJ, Kangas M, Sherman K, Allison KR.

Objectives: This paper focuses on the experiences of bereavement guilt among young adults bereaved by a caregiver's cancer, examining associations with attachment style, experiential avoidance, and psychological flexibility with the aim of informing psychosocial interventions for this population.

Methods: Ninety-seven young adults (18-25 years) bereaved by a parent/guardian's cancer completed an online survey, including measures of bereavement guilt, attachment style, experiential avoidance, and psychological flexibility. Mediation analyses explored the associations between attachment style (anxious, avoidant) and bereavement guilt, and if these associations were mediated by experiential avoidance or psychological flexibility.

Results: Bereavement guilt was significantly positively associated with anxious, but not avoidant, attachment to the deceased; the relationship between anxious attachment and bereavement guilt was partially mediated by experiential avoidance. Bereavement guilt was also negatively associated with psychological flexibility and engagement with bereavement counseling.

Significance of results: Given the limited literature on cancer-related bereavement in young adulthood, this study offers important theoretical and clinical insights into factors associated with more complex aspects of grief in this population. Specifically, this work identified that anxious attachment is associated with ongoing bereavement complications in the years following the death of a caregiver to cancer, with experiential avoidance partially mediating this relationship. While further research is needed to better understand the interaction between these factors and other related constructs, such as psychological flexibility, these findings may be helpful in selecting therapeutic approaches to use with this population.

27 September 2024

Moving on from a "good death": Child-and family-centred end-of-life care in paediatric critical care.

Butler AE, Bloomer MJ.

No Abstract 

18 September 2024

Fostering nurse-patient relationships in palliative care: An integrative review with narrative synthesis

Bishaw S, Coyne E, Halkett GK, Bloomer MJ.

Background: Nurse-patient relationships are an integral component of person-centred palliative care. Greater understanding of how nurse-patient relationships are fostered and perceived by patients and nurses can be used to inform nursing practice.

Aim: To systematically identify and synthesise how nurse-patient relationships are fostered in specialist inpatient palliative care settings, and how nurse-patient relationships were perceived by patients and nurses.

Design: Integrative review with narrative synthesis. The review protocol was registered with PROSPERO (CRD42022336148, updated April, 2023).

Data sources: Five electronic databases (PubMed, CINAHL Complete, Medline, Web of Science and PsycINFO) were searched for articles published from their inception to December 2023. Studies were included if they (i) examined nurse and/or patient perspectives and experiences of nurse-patient relationships in specialist inpatient palliative care, (ii) were published in English in a (iii) peer-reviewed journal. The Mixed Methods Appraisal Tool was used to evaluate study quality. Data were synthesised using narrative synthesis.

Results: Thirty-four papers from 31 studies were included in this review. Studies were mostly qualitative and were of high methodological quality. Four themes were identified: (a) creating connections; (b) fostering meaningful patient engagement; (c) negotiating choices and (d) building trust.

Conclusions: Nurses and patients are invested in the nurse-patient relationship, benefitting when it is positive, therapeutic and both parties are valued partners in the care. Key elements of fostering the nurse-patient relationship in palliative care were revealed, however, the dominance of the nurses' perspectives signifies that the nature and impact of these relationships may not be well understood.

18 September 2024

Maybe for unbearable suffering: Diverse racial, ethnic and cultural perspectives of assisted dying. A scoping review.

Bloomer MJ, Saffer L, Hewitt J, Johns L, McAuliffe D, Bonner A.

Background: Assisted dying, also commonly known as euthanasia and physician-assisted suicide, is legal in many countries. Interest in assisted dying is growing due to evolving societal understandings of a good death and a desire for choice. Ethico-legal perspectives are well-known, but as societies become more heterogenous, a greater understanding of the perspectives of people from diverse racial, ethnic, and cultural backgrounds is needed.

Aim: To explore perspectives of people from diverse racial, ethnic and cultural backgrounds about assisted dying.

Design: Scoping review with narrative synthesis. The protocol was registered with Open Science Framework.

Data sources: Medline, CINAHL Complete, PsycINFO and ProQuest Dissertations & Theses Global were searched from inception to May 2023. Citations were independently assessed against inclusion and exclusion criteria.

Results: Of the 17 included studies, perspectives of assisted dying were presented according to religion, religiosity, spirituality, race, ethnicity and ancestry. Perspectives were diverse, presenting more as a spectrum, with multiple intersections and interconnections. Support and/or opposition for assisted dying differed according to cultural attributes, but even amongst those with similar cultural attributes, perspectives differed according to life experiences and notions of suffering.

Conclusion: Perspectives on assisted dying are dynamic and evolving. Even where assisted dying is legalised, individual's cultural attributes contribute to unique perspectives of assisted dying as an end-of-life option. Thus, understanding a person's culture, beliefs, expectations and choices in illness, treatment goals and care is fundamental, extending beyond what may be already considered as part of clinician-patient care relationships and routine advance care planning.

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Last updated 30 April 2024