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.
Luckett T, DiGiacomo M, Heneka N, Disalvo D, Garcia M, Schaeffer I, et al.
Objectives: Children with brain cancer and their families have complex care needs throughout diagnosis, active treatment, long-term survivorship, and the palliative phase of illness. This study aimed to explore the perspectives of Australian specialist clinicians on barriers and facilitators to health care for children with brain cancer and their families.
Methods: A qualitative approach was taken using semi-structured interviews. Eligible participants were clinicians of any discipline providing care to children with brain cancer and their families in Australia. Interviews were conducted by telephone and asked about perceived strengths and weaknesses in health care and available resources for this population. Qualitative content analysis used a directed approach with inductive refinement.
Results: Eleven clinicians participated, 5 of whom were medical, 3 nursing, and 3 allied health. The overarching theme was that the rarity and diversity of brain tumors in children confers challenges to care that lead to variation in practice. Participants reported having to adapt care from guidelines and patient/family resources designed for adults with brain cancer and children with other cancers, and rely on clinical and research networks. Specialist comprehensive cancer care was generally perceived to offer the best model for accommodating the unique needs of each child/family, but barriers to access were highlighted for children in remote Australia, and long-term follow-up was perceived to be inadequate regardless of where children lived.
Significance of results: Until further brain cancer-specific paediatric guidelines become available, our findings highlight the need for communities of practice to share resources and reduce unwarranted variation.
Conclusion: Future research should focus on developing and evaluating guidelines and other resources specific to children with brain cancer, as well as informing suitable models for long-term follow-up care for survivors.
Kelada L, Jaaniste T, Cuganesan A, Chin WLA, Caellainn Tan S, Wu J, et al.
Background: Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings. Parent–sibling illness-related communication may contribute to siblings’ capacity to cope.
Objectives: In this study, we aimed to explore parent–sibling illness-related communication, from the perspectives of parents and siblings. We also aimed to qualitatively compare participants’ responses according to illness group (chronic illness vs. LLCs).
Methods: We collected qualitative data from siblings (32 with a brother/sister with a chronic illness, 37 with a brother/sister with an LLC) and parents of a child with a chronic illness (n=86) or LLC (n=38) using purpose-designed, open-ended survey questions regarding illness-related communication. We used an inductive qualitative content analysis and matrix coding to explore themes and compare across illness groups.
Results: Two-thirds of siblings expressed satisfaction with their family’s illness-related communication. Siblings typically reported satisfaction with communication when it was open and age-appropriate, and reported dissatisfaction when information was withheld or they felt overwhelmed with more information than they could manage. Parents generally favored an open communication style with the siblings, though this was more common among parents ofchildren with an LLC than chronic illness.
Significance of results: Our findings show that while many siblings shared that they felt satisfied with familial illness-related communication, parents should enquire with the siblings about their communication preferences in order to tailor illness-related information to the child’s maturity level, distress, and age.
Brooks LA, Manias E, Rasmussen B, Bloomer MJ.
Background: Clinicians need specific knowledge and skills to effectively communicate with patients and their family when a patient is dying in the ICU. End-of-life communication is compounded by language differences and diverse cultural and religious beliefs.
Aim: The aim was to develop and evaluate practice recommendations for culturally sensitive communication at the end of life.
Method: Modified two-round eDelphi study. An Australian national sample of 58 expert ICU clinicians of nursing and medical backgrounds participated in an online survey to rate the relevance of 13 practice recommendations. Ten clinicians participated in a subsequent expert panel interview to provide face validity and comprehensive details about the practical context of the recommendations. Survey data were analysed using descriptive statistics, interview data using deductive content analysis.
Results: All 13 practice recommendations achieved item content validity index (I-CVI) above 0.8, and scale content validity index (S-CVI) of 0.95, indicating sufficient consensus. Recommendations prioritising use of professional interpreters and nurse involvement in family meetings achieved near perfect agreement amongst participants. Recommendations to facilitate family in undertaking cultural, spiritual and religious rituals and customs, advocate for family participation in treatment limitation discussions, and clinician access to professional development opportunities about culturally sensitive communication also achieved high level consensus.
Conclusion: These practice recommendations provide guidance for ICU clinicians in their communication with patients and families from culturally diverse backgrounds.
Implications for Clinical Practice: Clinicians want practice recommendations that are understandable and broadly applicable across diverse ICU contexts. The high consensus scores confirm these practice recommendations are relevant and feasible to clinicians who provide end-of-life care for patients and their family members. The recommendations also provide clear guidance for ICU leaders, managers and organisational policy makers.
Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.
Kochovska S, Chang, S, Phillips JL, Currow DC.
Background: Impaired health states can limit a person's mobility, often progressively for people with life-limiting illnesses. Quantifying mobility changes is crucial for individual clinical care and service planning.
Objective: To explore any correlation between EQ-5D-5L's mobility dimension ratings and Life-Space Assessment (LSA) from a population sample.
Methods: An online population survey of Australian adults, nationally-representative by key demographics. An analysis of variance examined each level of the EQ-5D-5L mobility dimension rating against its LSA scores; Kendall's Tau assessed correlation.
Results: Participants (n = 6366) were 53% women, mean age 46.1 years (SD 18.6), and mean LSA score 78.0 (SD = 27.5; possible range 0-120). At each EQ-5D-5L mobility dimension level there was a significant difference between LSA scores (p < 0.001), and a moderate negative correlation (Kendall's tau b = -0.342) between the two measures.
Conclusion: Given the relationship defined, EQ-5D-5L mobility dimension ratings may prompt clinicians to consider further evaluation with the more detailed Life-Space Assessment.
Meehan E, Parker C, Ayton D, Katz N, Gold M, Wang Y, et al.
Background: Current research has shown that inpatient palliative care (PC) services are under-utilized, poorly integrated, and frequently introduced too late during inpatient hospital stays. The aim of this study was to identify a comprehensive list of multi-disciplinary facilitators and barriers to inpatient PC in Australian hospitals through a scoping literature review.
Methods: This review identified articles published since 2000 from 3 electronic databases (CINAHL Plus, MEDLINE and Embase), which included discussion of collaboration among non-palliative care clinicians and palliative care professionals in Australian hospitals. We used an inductive approach to identifying key domains of barriers and facilitators.
Results: Thirty-four articles met inclusion criteria following full text review. Barriers and facilitators were categorized in 7 domains: (1) Patient concerns, (2) Family concerns, (3) Clinician knowledge, education, and experience in palliative care, (4) Recognition and acceptance of prognosis when a patient was dying or needing end of life treatment, (5) Reconciliation of individual and professional values around PC, (6) Clinician access to resources for PC in the hospital, and (7) Communication between the PC team and ward clinicians. Each domain included potentially substantial barriers to PC delivery and practice. However, given the small sample sizes and specialized settings of many included studies, it was difficult to draw conclusions on the relative significance of different barriers across hospitals.
Conclusion: This review identified a number of barriers and facilitators across studies. Subsequent research needs to more comprehensively compare factors impacting PC use in order to improve implementation of PC across hospital settings.
Last updated 30 April 2024