Latest Australian research

Grant MP, Philip JAM, Deliens L, Komesaroff PA.

Background: Ethnography has been used to address a broad range of research questions in health care. With ethnographic research methods it is possible to gain access to the complex realities of health care practice as it occurs, through interpreting the nuances of individual and team behaviours, the roles and dynamics of care provision, and the social impacts and influences of illness. The provision of clinical palliative care is complex, involving multidisciplinary collaboration across different health systems, and is subject to a multitude of personal, cultural and environmental influences. This complexity demands creative methodological approaches to research in palliative care, of which ethnography plays an important, if infrequently utilised, role. 

Aim: This article aims to explore potential opportunities of ethnographic methods for palliative care research.

Findings: Ethnographic methods focuses on behaviour in the 'natural' setting of participants, to create theoretical descriptions of events, cultures, interactions and experiences. In palliative care these methods may provide nuanced understandings of illness, relationships and teams, communication, medical education, complex care provision, and novel or changing health practices. Of particular importance is the potential of these methods to understand complex practices and processes, and engage with under-represented population groups who may be excluded from interview research. 

Conclusion: Ethnography offers important opportunities for future research in palliative care and should be considered as part of the 'research toolbox' to improve understanding of the complex nature of care provision and the experiences of illness and loss.

Reeves SH, Ngu N, Le S, Runacres F.

We read with interest the publication by Al-Moussally et al in the September issue of BMJ Supportive and Palliative Care titled ‘Palliative care in cirrhosis of the liver’.1 This valuable work highlighted the underutilisation of specialist palliative care services in patients with end-stage liver disease (ESLD) despite their high symptom burden. The authors highlighted referral barriers, including misperceptions of palliative care, as well as health resource factors and insurance coverage.

We undertook a retrospective, longitudinal cohort study exploring the frequency and type of palliative care provided to patients attending a decompensated cirrhosis clinic in Australia. Finance is not a barrier to accessing specialist palliative care due to our universal health insurance scheme funded by taxpayers. Our preliminary data complement this article by exploring the non-financial barriers among patients with ESLD ineligible for transplant.

The primary aim of this study was to determine the proportion of patients presenting to an Australian tertiary hospital decompensated cirrhosis clinic with palliative care needs. Secondary outcomes included how many patients were appropriately referred for specialist palliative care review and determined the type of specialist palliative care received.

Sabanayagam D, Guha C, Scholes-Robertson N, Jaure A, Wong G. 

Abstract: People with kidney failure experience high symptom burden, which is associated with an increased risk of mortality, morbidity, and impaired quality of life. Symptoms are often severe and persistent, affecting many organs and causing considerable physical, psychological, and emotional distress. The causes of symptoms are often multifactorial, and the underlying pathophysiology is often poorly understood. Managing symptoms is challenging because of uncertainty regarding the use of validated patient-reported outcome measures in clinical practice and limited evidence for interventions to relieve symptoms. Addressing these challenges requires developing and validating symptom-targeted interventions and integrating symptom management strategies within a multidisciplinary framework, including nephrologists, palliative care physicians, and allied health and mental health professionals. This review provides an overview of the epidemiology and adverse impacts of symptoms in people with kidney failure. We will also provide practical guidance on selecting the appropriate symptom measures and evidence-based interventions for symptom assessment and management in kidney failure care.

Webster M, Barclay L, Parikh D, Lalor A.

Introduction: TSleep is fundamental to an individual's health, well-being and quality of life. Poor sleep and sleep disturbances are common for individuals receiving palliative care. Occupational therapists play a crucial role by effectively addressing sleep in this context. However, there has been limited research regarding the role, scope and implementation of sleep management interventions among occupational therapists within palliative care, and the needs that therapists have to support this area of practice.

Methods: An online cross-sectional survey was conducted among Australian occupational therapists with current or recent experience in palliative care. Qualitative data from open-ended response items were analysed using content analysis.

Results: Fifty-one occupational therapists (92.2% female) with an average of 7.6 years of experience working in palliative care completed the online survey. Most participants (88.2%) perceived that sleep was within the scope of the occupational therapy practice in palliative care; however, few participants indicated good/excellent knowledge of sleep or sleep assessment and intervention. Barriers to adequately addressing sleep issues included a lack of therapists' knowledge, limited understanding of the scope by other professionals, workload constraints and limited resources.

Conclusions: Occupational therapists may benefit from evidence-based resources and guidelines to address sleep issues in palliative care.

Kiely B, Travado L, Smith AL, Timeus IA, Kim SB, Haidinger R, et al.

Abstract: Advanced breast cancer (ABC) represents a significant global health challenge, not only due to its high mortality rates but also because of the profound physical, emotional, and social burden it imposes on patients. Support services - encompassing psychological, social and peer support, complementary and integrative therapies, wellness and lifestyle support, genetic counseling, survivorship programs, palliative and end-of-life care - are essential to addressing these challenges and ensuring that individuals with ABC receive holistic, person-centered care throughout their disease journey. This manuscript outlines the need for universal access to comprehensive, tailored support services to transform the landscape of ABC care, improve quality of life, and promote health equity globally. It summarizes research conducted for the ABC Global Alliance's Global Decade Report 2.0. The main findings are: a) More than half of people with ABC report never being offered support services; b) Global disparities in ABC support services persist despite policy recommendations from national cancer care plans; c) Global survey data show major gaps in ABC support service referral and utilization; d) Palliative care remains underutilized and often introduced too late in ABC care; e) Despite growth of ABC advocacy groups, healthcare provider referrals are limited. The findings from the ABC Global Alliance's Global Decade Report 2.0 have informed the development of a new ABC Global Charter. The ABC Global Charter 2.0 defines ten new achievable and measurable goals for the decade 2025-2035, aiming at improving the lives of people living with ABC worldwide.