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.
Blythe R, White NM, Brown C, Hillman K, Barnett AG.
Objective: This study used the Supportive Care Needs Framework (SCNF) to examine the psychological well-being of caregivers of children with dementia and their experiences navigating health and disability systems, including financial hardship.
Methods: Caregivers and bereaved caregivers, whose child died from a dementia, completed an online questionnaire and semi-structured interview. We adopted a convergent, mixed-methods approach, combining quantitative and qualitative results to enhance the interpretation of caregivers' experiences and priorities.
Results: Seventy-six caregivers completed the questionnaire, 19 of whom had more than one child affected and 15 of whom were bereaved caregivers. Eighteen caregivers (14 females/4 males; 7 bereaved/11 non-bereaved) participated in interviews. Quantitative data highlighted elevated psychological distress, with 70% scoring moderate-to-severe anxiety, 30% meeting criteria for severe pre-loss grief, and 39% of bereaved caregivers reporting severe, prolonged grief. Integrated qualitative and quantitative data underscored that insufficient psychosocial services and inadequate information navigating and accessing essential health and disability services markedly exacerbated caregiver distress, especially in the context of their child's multifaceted, complex, and progressive needs. We identified key domains evidencing caregivers' unmet needs and priorities, emphasizing the urgent need for specialized models of care and tailored family-centered psychosocial supports, responsive to the fast-changing and progressive needs of children and families.
Conclusions: Caregivers of children with dementia experience critical unmet needs and shoulder enduring burdens throughout the course of their child's progressive decline and following bereavement. Coordinated centers of expertise, equipped to deliver expert medical and integrated psychosocial support, are essential to more effectively support families affected by childhood dementia.
Sher J, Aradhya G, Lei A, Zhangchen B, Grant L, Pullen S, et al.
Background: Supportive care is a commonly provided health service for people with cancer, but less is known about how this model of care is implemented in populations with non-malignant, but life-limiting chronic conditions.
Methods: A search from 2000 to February 2024 was performed on four electronic databases targeting supportive care studies in adults living in Organisation for Economic Co-operation and Development Convention countries who had cardiovascular, respiratory, renal, hepatic, neurological or genetic (Huntington's disease and cystic fibrosis) chronic conditions. Data were extracted relating to the type of condition, the supportive care aim, whether the care was spiritual, psychological, social, informational or practical in nature and details relating to replication in a clinical setting.
Results: From 124 full text articles assessed for eligibility, 33 studies (39 reports) were included, representing 3701 participants. Supportive care was most described for people with neurological (n=10, 30%) and renal (n=10, 30%) conditions. The most common aims of supportive care studies related to symptom management (n=12, 36%), decision making (n=6, 18%) and reducing health service utilisation (n=5, 15%). The supportive care provided predominantly took the form of educational/informational (n=25, 76%), practical (n=21, 64%) or psychological care (n=20, 61%). Provision of spiritual care was described least often (n=7, 21%). Multidisciplinary teams commonly provided the service via face-to-face meetings or telephone calls.
Conclusions: This scoping review shows that a variety of supportive care interventions addressing a range of life-limiting chronic conditions exist, with a common focus on education and symptom management. Current gaps are indicated in the provision of social and spiritual support.
Close E, Downie J, White BP.
Abstract: Canada's federal monitoring system for medical assistance in dying (MAiD) commenced in 2018 and was expanded in 2023 to enhance data collection. This article sought to understand the role of monitoring in the regulation of MAiD in Canada. It reports on qualitative interviews conducted with 68 participants from two key groups: MAiD assessors and providers; and "organizational actors" from a range of bodies including government, regulators, professional organizations, and healthcare organizations. Participants' views of the monitoring framework for MAiD were analyzed. There was consensus that monitoring should be distinguished from oversight. Participants thought the monitoring system provided important transparency into MAiD practice but emphasized mitigating burdens on practitioners, where possible. Methods of data collection varied, and a pan-Canadian approach was challenging. Participants had different views about the appropriate scope of data. The article concludes with recommendations for effective monitoring of assisted dying practices.
Forsythe D, Davis K.
Objective: This rapid scoping review was undertaken as part of a larger study to design a statewide operational model of grief and bereavement supports in South Australia. The aim of the review was to describe the structures, services, and components of supports offered by grief and bereavement programs in South Australia.
Methods: The review was preceded by a desktop review of gray literature and informed by the Joanna Briggs Institute methodology for scoping reviews. Databases searched included Cumulated Index in Nursing and Allied Health Literature (CINAHL), MEDLINE, PsycINFO, and PubMed. Data were extracted about specific supports, services and programs, and imported into NVivo for thematic analysis.
Results: A total of 2383 articles were retrieved, with the findings from 88 articles extracted and included. Eleven themes relating to supports for grieving and bereaved people comprised: (1) follow-up bereavement care (with health professionals); (2) counseling support; (3) bereavement coordination; (4) peer support; (5) information about grief and loss; (6) referrals and risk assessment; (7) memorial services and mementos; (8) other practical and informal emotional supports; (9) personnel; (10) staff training; and (11) staff support.
Conclusions: This review advocates for including all identified supports in comprehensive grief and bereavement care. While implementing this in full may be challenging for individual services and providers due to time and resource constraints, integrating these components at a population level should be considered. Each element plays a role in delivering holistic care, requiring the combined efforts of community action and formal service provision.
Lambert E, Strickland K, Gibson J.
Purpose/ aim: To establish cultural considerations for people from culturally or linguistically diverse backgrounds at the end-of-life in Australia.
Background: Globally, there is a rapidly increasing proportion of the ageing population, and high levels of migration to Australia, the Australian healthcare community must recognise individualised and cultural needs when approaching death and end-of-life care. Many people from culturally and linguistically diverse backgrounds do not traditionally practice the palliative care approaches that have been developed and practised in Australia.
Design: A Critical Interpretive Synthesis.
Methods: A review protocol was established using PRISMA 2020 guidelines and the literature searched using CINAHL, PubMed, Psych INFO and Medline from January 2011 to 27th February 2021. This search protocol results in 19 peer-reviewed results for inclusion in critical analysis.
Results: Included studies were qualitative (14), quantitative (4) and mixed methods (1). Four themes were identified from the literature: (i) communication and health literacy; (ii) access to end-of-life care services; (iii) cultural norms, traditions and rituals; and (iv) cultural competence of healthcare workers.
Conclusions: Healthcare workers have an essential role in providing care to people with life-limiting illnesses. Cultural considerations during end-of-life care are imperative for the advancement of nursing practice. To achieve effective care for people of culturally and linguistically diverse backgrounds during end-of-life care, healthcare workers need to increase their education and cultural competency. There is inadequate research conducted within specific cultural groups, rural and remote Australian communities and individual cultural competence of healthcare workers.
Implications for practice: Continuing advancement within nursing practice relies on health professionals adopting a person-centred and culturally appropriate approach to care. To ensure individualised person-centred care is provided in a culturally appropriate way, healthcare workers must learn to reflect on their practice and actively advocate for people with culturally and linguistically diverse backgrounds during end-of-life care.
Last updated 30 April 2024