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.
Brookman R, Harris CB, O'Connor M.
Abstract: Having a traumatic or negative event at the centre of one's identity is associated with adverse psychological outcomes including post-traumatic stress, depression, and prolonged grief disorder (PGD). However, direct investigation of the role of centrality of a bereavement-event in the maintenance of PGD symptoms is scarce and has not compared immediate and long-term changes in event centrality nor examined the nature of the loss. Data from bereaved partners and adult children in The Aarhus Bereavement Study at four time points over 26 months post-loss were included in this study. Participants completed a PGD symptom measure and the Centrality of Events Scale (CES) on each occasion. Results suggest that bereaved partners had higher PGD and CES scores than bereaved adult children at all four post-bereavement time points. Regardless of relationship type, maintaining higher CES scores over time predicted PGD symptoms, over and above initial symptoms. Our findings suggest a risk factor for maintaining PGD symptoms is the continued centrality of the bereavement to ones' life story and autobiographical memory. This finding links the mechanisms for maintaining PGD symptoms to those involved in other disorders such as post-traumatic stress, with implications for theoretical models of prolonged grief as well as treatment.
© 2024. The Author(s).
Chan RJ, Knowles R, Ashbury FD, Bowen J, Chan A, Chin M, et al.
Background: Supportive care to ensure optimal quality of life is an essential component of cancer care and symptom control across the lifespan. Ongoing advances in cancer treatment, increasing toxicity from many novel treatment regimes, and variations in access to care and cancer outcomes across the globe and resource settings present significant challenges for supportive care delivery. To date, no overarching framework has been developed to guide supportive care development worldwide. As an initial step of the Multinational Association of Supportive Care in Cancer (MASCC) Supportive Care 2030 Movement, we developed a targeted, unifying set of ambition statements to envision the future of supportive cancer care.
Methods: From September 2022 until June 2023, we used a modified Delphi methodology to develop and attain consensus about ambition statements related to supportive cancer care. Leaders of MASCC Study Groups were invited to participate in an Expert Panel for the first two Delphi rounds (and a preliminary round to suggest potential ambition statements). Patient Advocates then examined and provided input regarding the ambition statements.
Findings: Twenty-seven Expert Panelists and 11 Patient Advocates participated. Consensus was attained on 13 ambition statements, with two sub-statements. The ambition statements addressed global standards for guideline development and implementation, coordinated and individualized care, dedicated supportive oncology services, self-management, needs for screening and actions, patient education, behavioral support, financial impact minimization, comprehensive survivorship care, and timely palliative care, reflecting collaboration, coordination and team-based approach across all levels.
Interpretation: This study is the first to develop shared ambitions for the future of supportive cancer care on a global level. These ambition statements can facilitate a coordinated, resource-stratified, and person-centered approach and inform research, education, clinical services, and policy efforts.
Funding: This project received funding support from Prof Raymond Chan's NHMRC Investigator Grant (APP1194051).
Crown Copyright © 2024 Published by Elsevier Ltd.
Helyar M, Eamens M, Coombs S, Smeal T, Mherekumombe M, Jaaniste T.
Objectives: Pediatric end-of-life (EOL) care at home is often provided by community palliative care (CPC) nurses who do not specialize in pediatrics. This study aimed to better understand the challenges CPC nurses face when providing EOL care to children at home.
Methods: A total of 52 CPC nurses across New South Wales (NSW), Australia, participated in an online survey about their training, attitudes, and experiences regarding the provision of home-based pediatric EOL care. Participants were asked to reflect back over a "negative" experience of caring for a child at EOL, where things did not go as well as hoped, and a "positive" EOL care experience, where nurses perceived that care of the child and family went well, and respond to questions about these experiences.
Results: Confidence of CPC nurses when providing EOL care to pediatric patients was significantly lower than when caring for adults (p's < .05). Most respondents expressed the desire for more training in pediatric EOL care. Cases identified as negative by CPC nurses did not significantly differ from positive cases in terms of the timing of the referral to CPC, clinical symptoms at EOL, or how well informed the nurses felt. Siblings were present at EOL in 74% of the negative experiences and 86% of the positive experiences, reportedly receiving significantly poorer support in the negative experiences (p = .002).
Conclusion: This research contributes to an improved understanding of the challenges associated with home-based pediatric EOL care and highlights potential areas for improvement in CPC service delivery and training.
Paterson C, Roberts C, Li J, Chapman M, Strickland K, Johnston N, et al.
Purpose: To critically synthesise qualitative research to understand experiences of supportive care in people affected by brain cancer and their informal caregivers.
Methods: A qualitative systematic review was conducted according to the Joanna Briggs methodology and has been reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) Guidelines. Electronic databases were searched by an expert systematic review librarian for all qualitative studies irrespective of research design. All publications were double screened by two reviewers using a pre-determined exclusion and inclusion criteria. The review was managed using Covidence systematic review software. Methodological quality assessment and data extraction were performed. Qualitative findings accompanied by illustrative quotes from included studies were extracted and grouped into categories, which created the overall synthesised findings.
Results: A total of 33 studies were included which represented a total sample of 671 participants inclusive of 303 patients and 368 informal caregivers. There was a total of 220 individual findings included in this review, which were synthesised into two findings (1) caregivers and patients perceived supports which would have been helpful and (2) caregiver and patient experiences of unmet supportive care needs.
Conclusion: This review highlighted the suffering and distress caused by brain cancer and associated treatments. Both patients and their informal caregivers experienced disconnect from themselves in renegotiating roles, and a profound sense of loneliness as the physical deterioration of the disease progressed. Both patients and informal caregivers reported similar unmet needs within the current service provision for brain cancer. However, what is apparent is that current cancer services are provided solely for patients, with little or no consideration to the support needs of both the patient and their informal caregiver. Service re-design is needed to improve care coordination with individualised informational support, implementation of holistic needs assessments for both the patients and their caregivers, better community support provision, improved opportunities for emotional care with early referral for palliative care services.
Implications for cancer survivors: It is recommended that members of the multidisciplinary brain cancer team reflect on these findings to target holistic needs assessments and develop shared self-management care plans for both the patient and the informal caregiver.
© 2023. The Author(s).
Last updated 30 April 2024