Latest Australian research

Oxley I, Lowrie D.

Introduction: Access to specialist palliative care in rural and remote Australia is limited, resulting in a reliance on generalist health professionals to provide these services. Although literature exists concerning the experiences of some health professions in providing rural generalist palliative care, little is known about the experiences of occupational therapists who fill these roles. This paper aims to address this gap in knowledge by exploring the experiences of rural generalist occupational therapists in the provision of palliative care in rural, regional, and remote Australia.

Methods: An interpretive phenomenological approach guided this research. Data were collected from eight rural generalist occupational therapists across Australia, using semi-structured, in-depth interviews. Data were thematically analysed to develop a nuanced understanding of lived experience in provision of palliative care.

Consumer and community involvement: Due to the focus of this research on the practice experiences of occupational therapists, consumer and/or community involvement was not undertaken in its design or implementation.

Findings: Three key themes were identified: 'community connections - a double-edged sword'; 'frustrations with structural and contextual factors limiting quality palliative care service provision'; and 'education and support as enablers of professional preparedness for palliative care service provision.' Taken collectively, these findings shed light on a variety of challenges and opportunities associated with rural generalist palliative care occupational therapy practice, as well as clues to their effective management.

Conclusion: Knowledge of rural generalist occupational therapists' experiences can inform workforce development, promote retention of rural occupational therapists, and improve outcomes for dying persons, their families and caregivers. This study offers new insights into challenges and opportunities for rural generalist occupational therapy practice in palliative care and highlights the way in which both, new and existing support structures may be of value in promoting practice capacity and therapist wellbeing.

Razmovski-Naumovski V, Noble B, Brown L, Agar MR.

Background: Medicinal cannabis clinical trials in palliative medicine present unique and complex challenges encompassing ethical, legal, and feasibility obligations, making consumer input essential. However, little is known about the consumer contribution in the medicinal cannabis research space.

Objective: We present a case report on consumer contribution in the design and conduct of a Phase I/IIb medicinal cannabis clinical trial for anorexia in people with advanced cancer. Our discussion highlights the various ways consumers contribute through (1) lived experience, (2) knowledge, (3) inclusion as investigators, (4) advocacy, and (5) outreach, considering approaches that can mitigate bias.

Conclusion: Consumer contribution shaped the study design, ensured successful implementation and completion of the trial, and will guide future dissemination of the results. It is crucial that consumers are included at all stages of the research process to uphold research integrity and alignment with future clinical practice and policy.

Chen J, Shaw JM, Dhillon HM, Halkett GKB, McDougall E, Nowak AK, et al.

Purpose: Informal caregivers of people with high grade glioma (HGG) often have high levels of unmet support needs. Routine screening for unmet needs can facilitate appropriate and timely access to supportive care. We aimed to develop a brief screening tool for HGG caregiver unmet needs, based on the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C).

Methods: Secondary analysis was performed on responses to the SCNS-P&C from 188 HGG caregivers, who participated in the Care-IS trial. SCNS-P&C items were assessed against four criteria: factor loadings; prevalence; variation in domain score; diagnostic accuracy. Supplementary analysis was conducted at two timepoints (T1 & T2) on the final selected items to identify caregivers indicating no needs on the screening items but reported a need on the original SCNS-P&C, suggesting they would be "missed" by the screening items.

Results: Six items performed best against psychometric criteria, capturing two domains: Cancer impact needs and Information and communication needs. Supplementary analysis showed screening items failed to identify only 7.4% (14/188) of caregivers with other unmet needs at T1 and 11.4% (18/158) at T2. Of those missed at T1, only four were missed again at T2.

Conclusions: We identified six-items for inclusion in a brief screening tool, the SCNS-P&C-6, demonstrating good sensitivity in detecting unmet needs of caregivers of people with HGG. Use of this tool in clinical practice has the potential to improve access to care and the cancer experience for both the caregiver and person with brain tumor.

Collier A, Chapman M, Hosie A.

Abstract: Benzodiazepines are a class of drug extensively used in palliative care. Their use has predominantly been studied within a biomedical framework. Our study instead focused on the sociocultural aspects of benzodiazepine practices. We aimed to explore clinicians, patients and family members' values, beliefs, knowledge and feelings regarding use of benzodiazepines, including in-situ clinical decision-making processes, affects and actions. Social theory understandings of affect, the body and of suffering provided the theoretical lens through which data were analysed. Analysis generated the following themes: (1) A special specialty; (2) The suffering body and the moral imperative to 'settle; (3) The liminal body - living and dying; and (4) Organizational realities. Use of benzodiazepines were largely governed by social and moral norms, cultural expectations and organizational realities as part of affective assemblages of care.

Disler APR, Madhuvu DA, Ly L, Pascoe DA, Hickson DH, Wright PJ, et al.

Background: The COVID-19 pandemic added to demand and diversification in specialist palliative care, including unprecedented need to deliver supportive respiratory therapies.

Aim: To understand training needs and ongoing models of care, including delivery of chronic disease management and supportive respiratory therapies, post-pandemic for palliative care clinicians.

Methods: Mixed-methods study of specialist palliative care physicians and nurses, recruited through Australian palliative care organisations and snowballing sampling between Nov 2022 - March 2023. Online survey captured training required and acquired in chronic disease management, respiratory therapies, and ongoing barriers to quality care delivery. Structured follow-up interviews explored adjustments in models of care and key areas of need. Quantitative data were described, free-text and interview data analysed through content and thematic analyses respectively.

Results: Of 71 palliative care responding clinicians (47 physicians, 23 nurses), most were female (79%) and many were rurally-based (38%). Completion of any chronic disease-specific training was infrequent (21% physicians, 30% nurses), compared with informal organ-specific training (61-83%) and age-related decline training (44-60%) through generalised palliative care qualifications. Respondents commonly managed chronic breathlessness (55%) and respiratory therapies (24-42%), yet targeted training was atypical. Content analysis (n=64) confirmed ongoing training gaps broadly in coping with daily operational demands and workforce fluctuations and specifically in respiratory skills. Interviews (n=7) reported challenges in care delivery post-pandemic; absence of pathways and policies for chronic disease management; and patient misconceptions about palliative care.

Conclusions: Clinicians are frequently required to support varied chronic conditions, including the use of respiratory therapies and breathlessness management, but report lack of specific training. Future endeavours should address workforce training and models of care to support increased demand.