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.
Ngezi S, Butler AE, Spelten E.
Objectives: This review aimed to chart existing literature and identify gaps in the evidence base concerning palliative and end-of-life care perspectives and experiences among different generations of African migrants residing outside the continent.
Methods: This review adhered to a predefined protocol, utilizing the Arksey and O'Malley 5-stage framework, as refined by Danielle Levac and colleagues. A systematic search of 5 bibliographic databases (from inception to December 2022) yielded 79 published studies. After title, abstract, and full-text screening using Covidence®, 7 studies met the inclusion criteria. Data extraction was guided by a conceptual framework tailored to the research topic and questions, with results presented in the narrative form.
Results: Cultural and religious beliefs and practices significantly shaped African migrants' perspectives on end-of-life care. A nuanced boundary between palliative and curative care emerged, with the former often stigmatized and stereotypically associated with death and dying. Common barriers to accessing end-of-life care included limited awareness, low literacy, and perceived inadequacy of culturally sensitive care, resulting in disparities in both access and outcomes. Additionally, reluctance to discuss death and dying, along with mistrust of Western healthcare systems, constituted significant obstacles. The studies underscored the necessity of enhancing provider-patient communication by engaging with migrants to raise awareness of services and fostering inclusive healthcare environments for improved care outcomes.
Significance of results: Existing research on racial and ethnic disparities underscores the unequal quality and outcomes of end-of-life care across various racial groups. However, there is still insufficient understanding of these diverse end-of-life care needs, particularly in host countries. Bridging this knowledge gap is crucial for reducing health disparities and enhancing the delivery of culturally sensitive care within Western healthcare systems.
O'Neill K, Bloomer MJ.
Background: Cultural diversity is increasing worldwide. The provision of end-of-life care for people who have culturally diverse rituals, customs and beliefs can present barriers for critical care nurses in delivering high quality end-of-life care.
Aim: To synthesise research evidence about the perceived barriers for critical care nurses providing end-of-life care for patients and their families from diverse cultural backgrounds in ICU.
Research question: What are the perceived barriers for nurses providing end-of-life care for patients and their families from culturally diverse backgrounds in ICU?
Design: Following protocol registration, a structured integrative review was undertaken across Medline, Embase, APA PsycINFO, CINAHL Complete, Cochrane library, Google Scholar and ProQuest Dissertation and Theses Global databases. A total of 823 records were independently assessed against inclusion and exclusion criteria. All included studies were assessed for quality. Narrative synthesis was used to report findings.
Results: Fifteen studies published between 2010 and 2022 were included. Findings are presented according to four themes: (i) Language and communication, (ii) (Dis) Comfort with religion, (iii) Consensus challenges and (iv) Caring at the end of life.
Conclusion: Recognising cultural diversity provides opportunity for critical care nurses to build awareness and understanding of cultural diversity as a way of optimising end-of-life care, through routine cultural assessment, advocating for professional interpreters to enhance communication and demonstrating openness to diverse cultural needs, preferences and practices.
Implications for clinical practice: The obvious first step in countering perceived challenges to end-of-life care is to increase awareness by acknowledging and respecting difference and diversity. Cultural assessments for all patients admitted to critical care would be an ideal first step in addressing challenges associated with cultural diversity. Greater access to professional interpreters to overcome language barriers is also essential to optimising communication and consensus in decision-making at the end of life.
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.
Last updated 30 April 2024