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.
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.
Mazumder S, Amiruddin A.
Background: Adolescents and young adult cancer patients (AYACP) with terminal diagnoses face the challenge and additional burden of planning their end-of-life (EoL) care. Although AYACP receive a standard-of-care at EoL, the care they receive may not align with their goals. As such, the characteristics of their goals-of-care are poorly understood.
Aims: This systematic review aimed to describe AYACP desired level and nature of involvement in EoL goals-of-care decision-making and determine their barriers and facilitators.
Methods: To address this, an extensive search across PsycINFO, Web of Science, PubMed, and Scopus databases was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines, yielding 23 studies from an initial 4211. The Mixed Methods Appraisal Tool was used to assess quality and risk of bias, while a thematic analysis was conducted to conceptualise AYACP EoL goals-of-care, which were presented through a narrative synthesis.
Results: Four key themes of AYACP EoL goals-of-care emerged: (1) preference for comfort-based care, (2) preference for life-prolonging interventions, (3) understanding disease prognosis and involvement in legacy-building, and (4) choosing not to decide and delegation of decision-making. AYACP reported that limited knowledge of available options was a barrier to decision-making, while exposure to interventions and EoL care information facilitated EoL goals-of-care discussions with family and healthcare professionals.
Conclusion: This review emphasises the diverse and evolving nature of AYACP goals-of-care and invites healthcare professionals to integrate early and regular discussions along with advance care planning to enhance quality of life and informed EoL decision-making.
Ng MHV, Wettesinghe PV, Ryerson CJ, Khor YH.
Introduction: Interstitial lung diseases (ILDs) are complex, requiring multifaceted care for optimal management of patients' symptoms and health outcomes. This systematic review evaluated the content coverage of currently available clinical guidance documents ILD.
Methods: A systematic search was performed to identify clinical guidance documents published between 2011 and March 2025 in the Embase, Ovid Medline and Trip databases. Document characteristics, quality and contents covered were independently assessed by two reviewers.
Results: A total of 79 ILD clinical guidance documents were identified, with clinical practice guidelines (n=50) having superior quality based on the Institute of Medicine standards. The content of most documents (84%) focused on ILD aetiology, with connective tissue disease (44%) being the most discussed. Only 46% of documents covered pulmonary manifestations, which often encompassed pulmonary hypertension (30%) and hypoxaemia (28%). Extrapulmonary morbidities were covered in 28% of documents, with gastro-oesophageal reflux disease (23%) and obstructive sleep apnoea (10%) being commonly presented. Behavioural and lifestyle factors were covered in 34% of documents, with most addressing physical inactivity (30%). Additionally, 51% of documents covered overall diagnostic approach for ILD, 35% lung transplantation, 22% acute exacerbations and 19% palliative care.
Conclusion: Despite growing awareness of ILD, most clinical guidance documents have limited coverage for domains of patient care outside of diagnosis and pharmacotherapies. Future clinical guidance documents on ILD should address the content gaps to deliver comprehensive care for patients with ILD, with engagement of different stakeholders from various regions.
Ruf H, Ireland CJ, Pelentsov LJ, Kopecki Z.
Background: Inherited epidermolysis bullosa (EB) is a rare, incurable genodermatosis characterised with recurrent skin blistering and mucosal fragility. Wound care and nursing are critical to everyday lives of children living with EB, while the profound effect of caring for a child with a painful genetic condition leaves a significant effect on quality of life of parents and the family. This study aimed to better understand the lived experiences and supportive care needs of parents of children with EB in Australia.
Methods: Interpretative phenomenological analysis was used, and semi structured focus groups interviews were conducted with Australian parents of children with EB. This included 18 parents of children with EB simplex (EBS), 9 parents of children with Junctional EB (JEB) and 16 parents of children with Dystrophic EB (DEB). The data were thematically analysed, all participants are residents of Australia and therefore reflect the services in this geographical location.
Results: Six overarching themes included: practical needs, emotional needs, informational needs, psychological needs, social needs and physical needs.
Conclusions: Parents caring for a child with EB in Australia face numerous needs and challenges regardless of EB severity which highlights the need for provision of better more comprehensive services to deliver family focused holistic EB care that can alleviate some of the burden of EB and improve the quality of life for families and individuals living with EB.
Shimoniaba K, Crawford K, Lee DA, Qiu Y, Lalor AF, Jackson KM, et al.
Aims: To examine residential aged care staff's experience of death and grief, and their support needs.
Methods: A mixed-methods sequential explanatory design, using an online cross-sectional survey that included the Texas Revised Inventory of Grief and the Grief Support in Health Care Scale. Followed by semi-structured interviews with direct care workers and managers working in residential aged care homes were conducted.
Results: Over 60% of participants experienced five or more resident deaths in the previous 12 months. Although, different levels of grief were experienced among different roles, the importance of open communication and opportunities for farewells after resident death was highlighted. Participants suggested support and education to normalise grief and promote self-care.
Conclusion: Recognising staff grief following the resident death is important. Providing support and education may help improve staff wellbeing and contribute to the delivery of high-quality care for both residents and their families.
Last updated 30 April 2024