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.
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).
Dao-Tran TH, Yeoh L, Comans T, Karusoo-Musumeci A, Auret KA, Sinclair R, et al.
Aim: To explore the associations between depression, anxiety, decisional conflict and advance care planning engagement and the potential mediating role of decisional conflict in the associations between depression, anxiety and advance care planning among community-dwelling older adults.
Design: A cross-sectional study was conducted with 262 community-dwelling older Australians across metropolitan, regional and rural communities between August and October 2022.
Methods: Validated self-reported questions were used to collect data on anxiety, depression (Hospital Anxiety and Depression Scale), decisional conflict (Decisional Conflict Scale), advance care planning engagement (Advance Care Planning Engagement Survey) and covariates (demographic characteristics, health literacy [Health Literacy Screening Questions]), overall health status (Short form 36). Data analysis included descriptive statistics, bivariate association analysis, general linear modelling and path analysis.
Results: Anxiety and decisional conflict were directly associated with advance care planning engagement even after controlling for potential effects of demographic characteristics, health literacy and overall health status. The model, including age, gender, country of birth, language spoken at home, education, overall health status, anxiety, depression, decisional conflict and interaction between anxiety and decisional conflict, explained 24.3% of the variance in their advance care planning engagement. Decisional conflict mediated the association between anxiety and advance care planning engagement.
Conclusion: Increased anxiety and decisional conflict were associated with reduced advance care planning engagement directly, even among community-dwelling older adults with higher levels of education and health literacy. Increased anxiety was associated with reduced advance care planning engagement indirectly via increased decisional conflict. Healthcare professionals should assess community-dwelling older adults' anxiety and implement interventions to manage their anxiety and decisional conflict, as these may facilitate their engagement in advance care planning.
Impact: Understanding factors associated with advance care planning engagement among community-dwelling older adults may inform strategies facilitating their future engagement in advance care planning. Findings from this study may be used as evidence for future implementation to facilitate the engagement of community-dwelling older adults in advance care planning.
Reporting method: The STROBE statement checklist was used as a guide to writing the manuscript.
Patient or public contribution: The study was advertised publicly through social media (e.g. Twitter and Facebook) and newsletters (e.g. Advance Care Planning Australia, Centre for Volunteering, Palliative Care Australia and a large home care service provider with approximately 7000 older clients receiving support or serv
Halkett GKB, McDougall E, Berg M, Clarke J, Dhillon HM, Lobb E, et al.
Background: Carers play an important role in supporting patients diagnosed with high-grade glioma (HGG). However, this experience is frequently distressing and many carers require support.
Objectives: To describe unmet needs of highly distressed carers of people with HGG and recommendations and referrals made by a nurse to support them within the Care-IS trial.
Methods: Descriptive case series. Carers of people with HGG in the Care-IS trial reporting severe anxiety and/or depression at baseline and/or 4 months and high distress at baseline (during chemoradiotherapy) and at 4 months were included. Carers completed the Partner and Caregiver Supportive Care Needs Scale and Brain Tumor Specific Unmet Needs Survey for carers at baseline, 2, 4, 6, and 12 months. Monthly nurse telephone assessments documented carers' needs, recommendations, and referrals made. Data are reported descriptively.
Results: Four highly distressed carers were identified (N = 98). Each reported a moderate-high need at ≥1 timepoint for: financial support and/or travel insurance; making life decisions in uncertainty; information about cancer prognosis/likely outcome; and coping with unexpected treatment outcomes. Specific brain tumor unmet needs were: adjusting to changes in personality, mental and thinking abilities, and accessing government assistance. Nurses provided information about treatment, side effects, and practical support. Recommendations for clinical care and referrals to community-based services, and medical specialists were offered.
Conclusions: Highly distressed carers have diverse support needs in many domains, which can change over time. Nurses were critical in identifying carers' needs, providing support, and making referrals. Carers' distress and needs require ongoing screening and management.
© The Author(s) 2024. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.
Mendis R, Wong A, Frenkel S, Southcott AM, Selman CJ, Martin J, et al.
Background: Sleep disturbance has a prevalence of 30-78% in patients with advanced cancer. While pharmacotherapy is common, randomized controlled studies (RCTs) investigating available agents are limited. This study examines the efficacy and safety of temazepam or melatonin versus placebo for sleep in advanced cancer.
Methods: This is a multicenter, randomized, double-blind, placebo-controlled study of temazepam, melatonin prolonged release (PR) or placebo for insomnia in patients with advanced cancer, and an insomnia severity index (ISI) score of >11.
Results: Twenty-one participants were randomized: nine to temazepam, eight to melatonin, and four to placebo. Baseline characteristics between groups were similar. The adjusted mean difference in day 8 ISI score versus placebo was -9.1 (95% confidence interval [CI] -17.5, 0.7, p = 0.04) for temazepam and -9.6 (95% CI -18,-1.2, p = 0.03) for melatonin PR. There was no improvement in global quality of life. Both agents were well tolerated.
Conclusion: Temazepam and melatonin PR were associated with a clinically significant improvement in patient-reported insomnia severity compared with placebo. Findings need confirmation with larger patient numbers.
Last updated 30 April 2024