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.
Lamba G, Vellar K, Burgess CP, La Brooy C, Komesaroff PA.
Abstract: Voluntary assisted dying (VAD) legislation has now been passed in all Australian jurisdictions, except for the Northern Territory. The Voluntary Assisted Dying Independent Expert Advisory Panel led public consultations in the NT to inform development of NT VAD legislation, submitting their report to the Chief Minister in July 2024, which has been publicly released. This perspective article reflects on the VAD implementation challenges highlighted in this public report. We discuss the unique demographics of the NT, including a significant Aboriginal population living in remote areas coupled with a high burden of chronic disease, which poses difficulties for equitable access to end-of-life services (respecting NT cultural protocols, “First Nations” in this perspective article are referred to as “Aboriginal peoples”, which is inclusive of Torres Strait Islanders). “Cultural safety” is critical for Aboriginal peoples but application is contextual. Telehealth, which may help increase access, also presents challenges.
Haining CM, Willmott L, White BP.
Abstract: Patients seeking to access voluntary assisted dying (VAD) are necessarily at the end of their lives. Hence, they are likely to be concurrently receiving care from institutions (community nursing services, health services, palliative care services, and aged care facilities) with different levels of participation in VAD. This article reports on the various institutional approaches to VAD based on eighteen semi-structured interviews with regulators from Victoria and Western Australia, representing fifteen institutions with varying levels of support for VAD. We generated five main themes from reflexive thematic analysis of the interview data: settling on a position; operationalizing a position and determining level of involvement; local policy decisions on specific VAD activities; transparency; and navigating pluralism and accommodating diverse views. Overall, our findings revealed significant diversity in how institutions approached various VAD activities and that an institution's position on VAD (whether it supports it or not) does not necessarily indicate the extent to which it will facilitate access to VAD. These findings may have relevance for institutions seeking to implement (or revise) their approach to VAD and suggest that greater transparency about institutional approaches to VAD is needed to enable people to make informed decisions about where to seek care.
Bourke C, Chenoweth L, Georgousopoulou E, Williams A.
Aims: To develop and validate the End-of-Life Care Assessment Tool for Dementia (EoLC-ATD).
Design: A methodological study with multiple phases.
Methods: Five sub-studies comprising: a review of 90 validated dementia measures to compile an item bank of advanced dementia symptoms; focus groups with registered nurses on advanced dementia symptom identification and relevance of item bank inclusions; Delphi surveys with dementia experts seeking consensus on the EoLC-ATD constructs and items; pilot testing of the EoLC-ATD; and field testing of the EoLC-ATD in persons with dementia.
Results: The item-bank included 180 symptoms, most of which focus group nurses (n = 17) identified as occurring in advanced dementia. Delphi surveys with dementia experts (n = 31) achieved 70% consensus for 25 of 26 EoLC-ATD items. Pilot testing of the EoLC-ATD by two nurses in eight persons with dementia showed good agreement for six constructs (Cohen's Kappa 0.856-0.927) and 26 items (Cronbach's alpha 77.0). An 'other sympto' item was included following RN recommendation. The 27-item EoLC-ATD field tested by 17 nurses in persons with dementia (n = 113) accurately identified advanced dementia symptoms (Cronbach's alpha 77.0, p < 0.001). Mortality at 180 days after baseline EoLC-ATD was significant (p < 0.001, area under the ROC curve p = 0.769).
Conclusions: The EoLC-ATD accurately and reliably identified symptoms of advanced dementia.
Chiew F, Krupka Z.
Abstract: Palliative care volunteers play a crucial role in supporting people who are terminally ill. Previous studies have indicated that a personal experience of grief and bereavement is a motivating factor for wanting to be a palliative care volunteer. Using reflexive thematic analysis as a methodological approach, the aim of this qualitative study was to explore the lived experience of grief and bereavement in a group of 11 Australian volunteers in adult palliative care settings. Three themes were identified from the dataset: witnessing and finding community; approaching death and dying with curiosity and openness; living well through death awareness. Importantly, death awareness was felt by volunteers to be an essential part of sense making around their past grief and a source of guidance for appreciating life. The findings of this study contribute to a deeper understanding of volunteering motivations, end-of-life care, and the changing nature of grief as a lived experience.
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.
Last updated 30 April 2024