Latest Australian Research

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.

 

14 January 2021

'The ethics approval took 20 months on a trial which was meant to help terminally ill cancer patients. In the end we had to send the funding back': a survey of views on human research ethics reviews

Scott AM, Chalmers I, Barnett A, Stephens A, Kolstoe SE, Clark J, Glasziou P.

Background:
We conducted a survey to identify what types of health/medical research could be exempt from research ethics reviews in Australia.

Methods:
We surveyed Australian health/medical researchers and Human Research Ethics Committee (HREC) members. The survey asked whether respondents had previously changed or abandoned a project anticipating difficulties obtaining ethics approval, and presented eight research scenarios, asking whether these scenarios should or should not be exempt from ethics review, and to provide (optional) comments. Qualitative data were analysed thematically; quantitative data in R.

Results:
We received 514 responses. Forty-three per cent of respondents to whom the question applied, reported changing projects in anticipation of obstacles from the ethics review process; 25% reported abandoning projects for this reason. Research scenarios asking professional staff to provide views in their area of expertise were most commonly exempted from ethics review (to prioritise systematic review topics 84%, on software strengths/weaknesses 85%); scenarios involving surplus samples (82%) and N-of-1 (single case) studies (76%) were most commonly required to undergo ethics review. HREC members were 26% more likely than researchers to require ethics review. Need for independent oversight, and low risk, were most frequently cited in support of decisions to require or exempt from ethics review, respectively.

Conclusions:
Considerable differences exist between researchers and HREC members, about when to exempt from review the research that ultimately serves the interests of patients and the public. It is widely accepted that evaluative research should be used to reduce clinical uncertainties-the same principle should apply to ethics reviews.

14 January 2021

Continuing Education Outcomes for Advance Care Planning: A Systematic Review of the Literature

Pearse W, Saxon R, Plowman G, Hyde M, Oprescu F.

Introduction:
Advance care planning (ACP) is a process of considering future health and care needs for a time when a person may be unable to speak for themselves. Health professional continuing education programs have been proposed for facilitating patient participation in ACP; however, their impacts on participants, patient and clinical outcomes, and organizational approaches to ACP are not well understood.

Methods:
This systematic literature review examined interventional studies of education programs conducted with health professionals and care staff across a broad range of settings. Five electronic databases were searched up to June 2020, and a manual search of reference lists was conducted. The quality of studies was appraised by the first, second, and third authors.

Results:
Of the 7993 articles identified, 45 articles met the inclusion criteria. Program participants were predominantly medical, nursing, and social work staff, and students. Interventions were reported to improve participants' self-perceived confidence, knowledge, and skills; however, objectively measured improvements were limited. Multimodal programs that combined initial didactic teaching and role-play simulation tasks with additional activities were most effective in producing increased ACP activity in medical records. Evidence for improved clinical outcomes was limited.

Discussion:
Further studies that use rigorous methodological approaches would provide further evidence about what produces improved patient and clinical outcomes. Needs analyses and quality indicators could be considered to determine the most appropriate and effective education resources and monitor their impacts. The potential contribution of a broader range of health professionals and interprofessional learning approaches could be considered to ultimately improve patient care.

11 January 2021

Facilitators and barriers to shared primary and specialist cancer care: a systematic review

Lisy K, Kent J, Piper A, Jefford M.

Purpose:
To care for the growing population of cancer survivors, health services worldwide must reconsider how to deliver care to people living with and beyond a cancer diagnosis. Shared care, defined as cancer care that is shared between specialist and primary care providers, is one model that has been investigated; however, practical guidance to support implementation is lacking. This systematic review aimed to explore facilitators and barriers to implementing shared cancer care and to develop practice and policy recommendations to support implementation.

Methods:
A systematic literature search was conducted in June 2019 across MEDLINE, Embase, Emcare, and PsycINFO databases. Quantitative and qualitative data relevant to the review question were extracted and synthesized following a mixed methods approach.

Results:
Thirteen papers were included in the review, 10 qualitative and three quantitative. Included articles were from Australia (n = 8), the USA (n = 3), and one each from the UK and the Netherlands. Sixteen themes were developed under four categories of patient, healthcare professional, process, and policy factors. Key themes included the perceived need for primary care provider training, having clearly defined roles for each healthcare provider, providing general practitioners with diagnostic and treatment summaries, as well as protocols or guidelines for follow-up care, ensuring rapid and accurate communication between providers, utilizing electronic medical records and survivorship care plans as communication tools, and developing consistent policy to reduce fragmentation across services.

Conclusion:
Recommendations for practice and policy were generated based on review findings that may support broader implementation of shared cancer care.

11 January 2021

Evaluating a multidimensional strategy to improve the professional self-care of occupational therapists working with people with life limiting illness

Apostol C, Cranwell K, Hitch D.

Background:
The term ‘life limiting conditions’ refers to premature death following decline from chronic conditions, which is a common circumstance in which occupational therapists work with people at the end of life. The challenges for clinicians of working with these patients have long been recognised, and may have a significant impact on their professional self-care. This study aimed to evaluate a multidimensional workplace strategy to improve the professional self-care of occupational therapists working with people living with a life limiting condition.

Methods:
A pre and post mixed methods survey approach were utilised, with baseline data collection prior to the implementation of a multidimensional workplace strategy. The strategy included professional resilience education, targeted supervision prompts, changes to departmental culture and the promotion of self-care services across multiple organisational levels. Follow up data collection was undertaken after the strategy had been in place for 2 years. Quantitative data were analysed descriptively, while qualitative data were subjected to thematic analysis.

Results:
One hundred three occupational therapists responded (n = 55 pre, n = 48 post) across multiple service settings. Complex emotional responses and lived experiences were identified by participants working with patients with life limiting conditions, which were not influenced by the workplace strategy. Working with these patients was acknowledged to challenge the traditional focus of occupational therapy on rehabilitation and recovery. Participants were confident about their ability to access self-care support, and supervision emerged as a key medium. While the strategy increased the proportion of occupational therapists undertaking targeted training, around half identified ongoing unmet need around professional self-care with this patient group. Demographic factors (e.g. practice setting, years of experience) also had a significant impact on the experience and needs of participants.

Conclusions:
The multidimensional workplace strategy resulted in some improvements in professional self-care for occupational therapists, particularly around their use of supervision and awareness of available support resources. However, it did not impact upon their lived experience of working with people with life limiting conditions, and there remain significant gaps in our knowledge of support strategies for self-care of occupational therapist working with this patient group.

11 January 2021

Inadequate completion of advance care directives by individuals with dementia: national audit of health and aged care facilities

Bryant J, Sellars M, Sinclair C, Detering K, Buck K, Waller A, White B, Nolte L.

Objectives:
(i) Describe the prevalence and type of advance care directives (ACDs) and other advance care planning (ACP) documentation completed by persons with dementia, healthcare providers and others on behalf of a person with dementia; (ii) identify the personal and ACP programme characteristics associated with having ACP documentation in the health record; (iii) identify the personal and ACP programme characteristics associated with having a self-completed ACD.

Methods:
A multicentre audit was undertaken in Australian hospitals, general practices and residential aged care facilities. Auditors extracted demographic and ACP data from the records of eligible patients. ACP programme characteristics were provided by a site representative. Logistic and multinomial regression were used respectively to examine the factors associated with completion of any ACP documentation, and self-completion of an ACD by persons with dementia.

Results:
A total of 1388 people with dementia (33.2%) from 96 sites were included. Overall, 60.8% (n=844) had ACP documentation; 31.6% (n=438) had a self-completed ACD and 29.3% (n=406) had an ACP document completed by a health professional or someone else on their behalf. Older participants were more likely to have ACP documented. Multivariate analyses indicated the odds of having self-completed ACP documents, compared with no advance care plan or ACP completed by someone else, were significantly influenced by age, country of birth, setting and whether the site had ACP training, policies or guidelines.

Discussion:
While 60% of people with dementia had some form of ACP documentation, only half of the cases in which ACP was documented included an ACD completed by the person themselves.

11 January 2021

Memorialisation during COVID-19: implications for the bereaved, service providers and policy makers

Lowe J, Rumbold B, Aoun SM.

Background:
The aim of this rapid perspective review is to capture key changes to memorialisation practices resulting from social distancing rules implemented due to the ongoing COVID-19 pandemic.

Method:
As published peer-reviewed research pertaining to memorialisation practices during the COVID-19 pandemic is lacking, this rapid review includes academic literature from the pre-COVID-19 period and international media reports during the pandemic.

Findings:
Changes to memorialisation practices were under way before COVID-19, as consumer preferences shifted towards secularisation and personalisation of ritual and ceremony. However, several key changes to memorialisation practices connected with body preparation, funerals, cremation, burials and rituals have taken place as a consequence of the COVID-19 pandemic.

Discussion:
Although boundaries between public and private memorialisation practices were already blurred, the COVID-19 pandemic has accelerated this process. Without access to public memorialisation, practices are increasingly private in nature. A number of implications are considered for the bereaved, service providers and policy makers.

Conclusion:
Forms of memorialisation and bereavement support emerging during the pandemic that blend the public and the private are likely to persist in a post-pandemic world.

11 January 2021

Words describing feelings about death: A comparison of sentiment for self and others and changes over time

Miller-Lewis LR, Lewis TW, Tieman J, Rawlings D, Parker D, Sanderson CR.

Abstract:
Understanding public attitudes towards death is needed to inform health policies to foster community death awareness and preparedness. Linguistic sentiment analysis of how people describe their feelings about death can add to knowledge gained from traditional self-reports. This study provided the first description of emotive attitudes expressed towards death utilising textual sentiment analysis for the dimensions of valence, arousal and dominance. A linguistic lexicon of sentiment norms was applied to activities conducted in an online course for the general-public designed to generate discussion about death. We analysed the sentiment of words people chose to describe feelings about death, for themselves, for perceptions of the feelings of ‘others’, and for longitudinal changes over the time-period of exposure to a course about death (n = 1491). The results demonstrated that sadness pervades affective responses to death, and that inevitability, peace, and fear were also frequent reactions. However, words chosen to represent perceptions of others’ feelings towards death suggested that participants perceived others as feeling more negative about death than they do themselves. Analysis of valence, arousal and dominance dimensions of sentiment pre-to-post course participation demonstrated that participants chose significantly happier (more positive) valence words, less arousing (calmer) words, and more dominant (in-control) words to express their feelings about death by the course end. This suggests that the course may have been helpful in participants becoming more emotionally accepting in their feelings and attitude towards death. Furthermore, the change over time appeared greater for younger participants, who showed more increase in the dominance (power/control) and pleasantness (valence) in words chosen at course completion. Sentiment analysis of words to describe death usefully extended our understanding of community death attitudes and emotions. Future application of sentiment analysis to other related areas of health policy interest such as attitudes towards Advance Care Planning and palliative care may prove fruitful.

11 January 2021

Reshaping healthcare delivery for elderly patients: the role of community paramedicine; a systematic review

van Vuuren J, Thomas B, Agarwal G, MacDermott S, Kinsman L, O'Meara P, Spelten E.

Background:
Healthcare systems are overloaded and changing. In response to growing demands on the healthcare systems, new models of healthcare delivery are emerging. Community paramedicine is a novel approach in which paramedics use their knowledge and skills beyond emergency health response to contribute to preventative and rehabilitative health. In our systematic review, we aimed to identify evidence of the community paramedicine role in care delivery for elderly patients, with an additional focus on palliative care, and the possible impact of this role on the wider healthcare system.

Methods:
A systematic review of peer-reviewed literature from MEDLINE, Embase, CINAHL, and Web of Sciences was undertaken to identify relevant full-text articles in English published until October 3, 2019. Additional inclusion criteria were studies focussing on extended care paramedics or community paramedics caring for elderly patients. Case studies were excluded. All papers were screened by at least two authors and underwent a quality assessment, using the Joanna Briggs Institute appraisal checklists for cross sectional, qualitative, cohort, and randomised controlled trial studies to assess the methodological quality of the articles. A process of narrative synthesis was used to summarise the data.

Results:
Ten studies, across 13 articles, provided clear evidence that Community Paramedic programs had a positive impact on the health of patients and on the wider healthcare system. The role of a Community Paramedic was often a combination of four aspects: assessment, referral, education and communication. Limited evidence was available on the involvement of Community Paramedics in palliative and end-of-life care and in care delivery in residential aged care facilities. Observed challenges were a lack of additional training, and the need for proper integration and understanding of their role in the healthcare system.

Conclusions:
The use of community paramedics in care delivery could be beneficial to both patients' health and the wider healthcare system. They already play a promising role in improving the care of our elderly population. With consistent adherence to the training curriculum and effective integration within the wider healthcare system, community paramedics have the potential to take on specialised roles in residential aged care facilities and palliative and end-of-life care.

15 December 2020

End-of-life care for older first-generation migrants: a scoping review

Gerber K, Maharaj E, Brijnath B, Antoniades J.

Background:
The unprecedented scale of contemporary migration across countries over the last decade means that ageing and dying occur in a more globalised, multicultural context. It is therefore essential to explore the end-of-life experiences of older people from migrant backgrounds.

Methods:
A scoping review of peer-reviewed articles published in English from 2008 to 2018. Included studies addressed end-of-life preferences, attitudes, values and beliefs of first-generation international migrants who were at least 50 years of age.

Results:
Fifteen studies met the inclusion criteria for this review, which addressed six key themes: (1) the reluctance among older migrants and their families to talk about death and dying; (2) difficult communication in patient-clinician relationships; (3) the contrast between collectivistic and individualistic norms and its associated end-of-life preferences; (4) limited health literacy in older adults from migrant backgrounds; (5) experiences with systemic barriers like time pressure, inflexibility of service provision and lack of cultural sensitivity and (6) the need for care providers to appreciate migrants' 'double home experience' and what this means for end-of-life decision-making regarding place of care and place of death.

Discussion:
To respond effectively to an increasingly culturally diverse population, healthcare staff, researchers and policymakers need to invest in the provision of culturally sensitive end-of-life care. Areas for improvement include: (a) increased awareness of cultural needs and the role of family members; (b) cultural training for healthcare staff; (c) access to interpreters and translated information and (d) involvement of older migrants in end-of-life discussions, research and policymaking.

7 December 2020

A scoping review of end-of-life communication in international palliative care guidelines for acute care settings

Olsson MM, Windsor C, Chambers S, Green T.

Context:
End-of-life communication in acute care settings can be challenging and many patients and families report dissatisfaction with those conversations.

Objective:
To explore existing guidelines around palliative care to increase current understanding of end-of-life communication processes applicable to the acute care setting.

Methods:
A scoping review following the method of Arksey and O'Malley was undertaken to identify eligible documents and thematically summarise findings. Websites of government authorities, departments and ministries of health as well as palliative care organisations were searched as were MEDLINE, CINAHL (EBSCOhost), EMBASE, Cochrane Library, Joanna Briggs Institute and PsycINFO databases. Searches were limited to documents published between January 2009 and August 2019 that were non-disease specific and applicable to the acute care setting.

Results:
Thirteen guidelines from nine different countries were identified. Thematic analysis produced eight themes: 1) The purpose and process of end-of-life communications, 2) Cognitive understanding and language in end-of-life communication, 3) Legal aspects of end-of-life communication, 4) Conflicts and barriers related to end-of-life care, 5) End-of-life communication related to medical record documentation, 6) Healthcare professionals' responsibilities and collaboration, 7) Education and training and 8) Policies, guidelines, and tools for end-of-life communication.

Conclusions:
Palliative and end-of-life guidelines applicable to acute care settings outline the purpose of end-of-life communication and address how, when and by whom such conversations are best initiated and facilitated. How guidelines are developed and what aspects of communications are included and emphasised may differ across countries related to role differences of physicians and nurses and national laws and regulations.

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