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.
Fisher L, Stirling M, Jones R, Pierce K, Lingam R, Marshall GM, et al.
Aim: Improving the wellbeing of children with chronic health conditions and their caregivers can be maximised through research that addresses the priorities of this population. This study aimed to investigate the research topics and areas of care deemed most important to caregivers of children living with chronic health conditions in Australia.
Methods: A list of 25 research topics were presented in two rounds of a classic Delphi consensus survey to caregivers of children with chronic health conditions. Caregivers ranked these topics according to their perceived importance. High ranking topics were taken forward into a value-weighting exercise which was presented to a national sample of caregivers. In this exercise caregivers were asked to allocate hypothetical research funding units (FU) across research topics as well to different areas of care (Prevention, Screening and Early Detection; Newly Diagnosed; Receiving treatment; Finished treatment; Relapsed, receiving Palliative care; Significant Others [e.g., family members, friends, caregivers]).
Results: Seventy five caregivers completed Delphi Survey 1, 45 completed Delphi Survey 2 and 252 completed the value-weighting exercise. In the value-weighting exercise, the research topic 'Improve Access to Healthcare' received the highest mean allocation of 23.42/100 FU (SD = 19.48), followed by 'Improving Day to Day Functioning' (mean allocation 17.37 FU [SD = 16.2]). The 'Prevention, Screening and Early Detection' area of care received the highest mean allocation of 27.47 FU (SD = 19.48).
Conclusions: This study highlights the research priorities of caregivers of children living with chronic health conditions. This information can be used to guide future research and funding decisions in paediatric chronic health conditions.
Lovell MR, Warner KN, Archer P, McCabe R, Siddall PJ.
Objectives: People living with cancer and other life limiting illnesses often experience spiritual and existential distress. This distress may be linked to trauma related to the disease, treatment or preexisting posttraumatic stress, which may be exacerbated. Interventions based on posttraumatic growth have proven to be successful in promoting psychological, spiritual and existential wellbeing in people suffering chronic pain and spinal cord injury. This project aimed to design and develop an intervention to promote psychological and spiritual well-being in people with a life-limiting illness receiving palliative care by drawing on the principles of posttraumatic growth.
Methods: Action research cycles, based on a participatory health perspective to include those living with life limiting illness and/or practitioners associated with their care in all stages of the study, were used to design and develop an intervention based on posttraumatic growth principles. People experienced in delivering palliative care services in hospital and/or community settings (N = 30) and those suffering life limiting illnesses and receiving palliative care (N = 9) participated in this study. Two pilot programs were run.
Results: Participatory action research, used iteratively in two pilot programs, was employed to design and develop a novel intervention based on posttraumatic growth suitable for use in the palliative care context.
Conclusions: This intervention developed using a posttraumatic growth framework has the capacity to improve the lives of people living with a life-limiting illness while receiving palliative care.
Senanayake P, Oldroyd J.
Background: The goal of pediatric palliative care is to improve the quality of life of children with life-limiting or life-threatening disease and their families through a holistic care approach. Although the current evidence suggests that the existing palliative care services are not meeting the needs of these families, especially the parents, these studies are heterogeneous with inconsistent results. The aim of this study was to systematically synthesize and critically evaluate the available evidence on unmet needs of parents in pediatric palliative care.
Methods: A qualitative systematic review was conducted, informed by the Preferred Reporting Items for Systematic reviews and Meta-Analyses 2020 statement. Five electronic databases: MEDLINE, Scopus, Web of Science, CINAHL, and PsychINFO were searched. Included studies were appraised using the Critical Appraisal Skills Programme (CASP) checklist and then analyzed using a framework analysis.
Results: Thirteen studies were included. Five major themes emerged: (1) pediatric palliative care services delivery and care coordination, (2) emotional, psychological, and spiritual support, (3) end-of-life care and bereavement support, (4) practical and daily living support, and (5) communication and information. Parents reported unmet needs in multiple dimensions and wished for more support in caring for their children.
Conclusions: Given that all of the unmet needs align with already established pediatric palliative care standards, this review highlights the need for revised health care policies and practices that will lead to better implementation of these standards in practice.
Thomas B, Barclay G, Mansfield K, Mullan J, Lo WA.
Context: End-of-life distress and delirium are common in palliative care inpatients, often requiring sedatives that diminish interaction. Current practices rely on clinical experience rather than evidence.
Objectives: To compare the sedative efficacy of subcutaneous dexmedetomidine versus midazolam in managing end-of-life distress while maintaining responsiveness, and to evaluate comparative effect on delirium in the terminal phase.
Methods: Single center randomized non-blinded clinical trial (ACTRN12621000052831) of palliative care inpatients in an Australian Local Health District admitted for end-of-life care. Patients received dexmedetomidine (0.5µg/kg/h) or midazolam (0.25mg/kg/day) via subcutaneous infusion for symptom management during the terminal phase. The primary outcome was responsiveness measured by mean Richmond Agitation Sedation Score-Palliative version (RASS-PAL) compared between treatment arms over the first 72 hours. Secondary outcomes included delirium severity (Memorial Delirium Assessment Score) and patient comfort (Patient Comfort Assessment).
Results: Fifty two patients were randomized (median age 80 years [IQR 72-88]; 63% male) and included in the primary analysis. Mean RASS-PAL scores showed no significant difference between arms (dexmedetomidine vs midazolam: day 1: -2.33 vs -1.90; day 2: -2.44 vs -2.86; day 3: -2.95 vs -2.53; all P>0.05). Dexmedetomidine showed superior early delirium severity scores (day 1 MDAS: 6.5 vs 8.8, P=0.05) which did not persist. Protocol withdrawal occurred earlier in the midazolam arm (5 vs 0 patients on day 1, p=0.025). Patient comfort scores remained mild (PCA <3) in both arms.
Conclusions: Dexmedetomidine and midazolam can achieve sedative equivalence with similar RASS-PAL scores. Dexmedetomidine patients experienced lower initial delirium severity scores and fewer early withdrawals in secondary analysis. Current dosing guideline for midazolam may need revising.
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.
Last updated 30 April 2024