Find out what Australian researchers are publishing in palliative care 

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.

15 August 2022

Psycho-existential Symptom Assessment Scale (PeSAS) Screening in Palliative Care

Kissane DW, Appleton J, Lennon J, Michael N, Chye R, King T, William L, Poon P, Kanathigoda S, Needham K, Bobevski I.

Context: Psycho-existential symptoms are common yet often missed or neglected in palliative care. Screening can be an effective way to recognize and respond to this need.

Objectives: We aimed to implement routine use of the Psycho-existential Symptom Assessment Scale (PeSAS) as a screening tool in Australian palliative care services and discern the symptom prevalence identified.

Methods: In a multi-site rolling design, we established implementation site committees and embarked on experiential workshops to train clinicians in the tool's efficient use. Patient symptom prevalence data were collected to compare uptake across sites. Descriptive statistics were applied.

Results: Over one year, we trained 216 clinicians across six palliative care services in the use of the PeSAS as a screening tool and collected data from 1405 patients. Clinicians reported significant growth in their sense of efficacy in assessing psycho-existential wellness. Services using electronic records implemented most easily. Psycho-existential symptoms with clinically significant prevalence (scores ≥4 /10) included anxiety 41.1%, discouragement 37.6%, hopelessness 35.8%, pointlessness 26.9%, depression 30.3%, and the wish to die 17%. The precision of measurement within 3% was found for severe ratings (score ≥8 /10) including anxiety 10.6%, depression 10.2%, the wish to die 7.6%, and confusion 3.6%.

Conclusion: Clinicians can be trained to screen with the Psycho-existential Symptom Assessment Scale, which serves as a valuable measure to better recognize symptoms of psycho-existential distress among palliative care patients. Implementation barriers included the prior ethos of the service, confidence in talking about these themes, electronic data entry, and perceived time pressures.

8 August 2022

Support Needs for Bhutanese Family Members Taking Care of Loved Ones Diagnosed with Advanced Illness

Laabar TD, Auret K, Saunders C, Ngo H, Johnson CE.

Background: Palliative care aims to improve the quality of life of patients diagnosed with an advanced illness and their families. Family members, who often play a central role caring for their very ill loved ones, have significant support needs. In Bhutan, where palliative care is an emerging concept, the needs of family members have not been assessed thus far. Objective: This study explored the support needs of Bhutanese family members caring for their loved ones diagnosed with advanced illness.

Methods: This is a cross-sectional descriptive study. Setting/Subjects: Study sites included the national referral hospital, the two regional referral hospitals, four district hospitals and Basic Health Units (Grade I and II), spread across Bhutan. Participants were recruited through purposeful and snowball sampling strategies. Data were collected from May to August 2019. The Carer Support Needs Assessment Tools (CSNAT) was used.

Results: Despite unforeseen challenges, 46 family members out of 60 identified (77%) participated in the survey. Twenty-three (50%) cared for relatives with advanced cancer and the remainder for loved ones with non-malignant conditions. This study found high support needs among both groups. The priority needs included understanding their relative's illness, managing symptoms, providing personal care, financial aspects, dealing with their own feelings and emotions and knowing what to expect in the future.

Conclusion: This study will help inform the World Health Organization recommended public health approach to palliative care modified to the Bhutanese context for enabling a cost-effective intervention to improve the quality of lives of patients and families.

8 August 2022

Health-care workers' understanding of and barriers to palliative care services to Aboriginal children with cancer

Jessop S, Phelan C.

Aim: To identify barriers in the understanding and provision of optimal palliative care to Aboriginal children with cancer by health-care staff, with the aim to support education and training that highlights the importance of cultural, physical and spiritual needs at end-of-life.

Methods: Medical and nursing staff working in Departments of Palliative Care, Metabolic Medicine and Haematology/Oncology at the Women's and Children's Hospital in Adelaide, South Australia, were asked to complete a survey regarding their experience in treating Aboriginal children receiving palliative care. The survey addressed the understanding of cultural and spiritual needs, barriers encountered and opinions for improved services.

Results: The survey was completed by 34 participants. 91.2% (n = 31) had provided care to Aboriginal children who were receiving care during palliative and end-of-life phases for a diagnosis of cancer, 58.8% (n = 20) of which had supported children returning home. Only 23.5% of participants reported comfort in communicating about spiritual/cultural needs with patients and families. There was minimal previous exposure to education (17.6%), yet all participants were interested in future education opportunities.

Conclusion: This study highlights a paucity in understanding and comfort among health-care workers in treating Aboriginal children at end-of-life. New models, including the training of staff, educational resources and involvement of Aboriginal health-care workers, may improve care.

8 August 2022

Attitudes of Palliative Care Practitioners Towards Enrolling Patients in Clinical Trials

Nagla A, Le B, White C, V Kiburg K, Philip J.

Background: Recruitment of participants for clinical trials remains a key consideration for investigators. This is particularly relevant in palliative care, where practitioners are sometimes reluctant to refer patients for consideration of enrolment. Reasons for this reluctance range from concerns about excessive burden to patients, through to debate about the appropriateness of undertaking trials in the palliative care setting.

Aim: The aim of this study was (1) to explore palliative care practitioners' attitudes and views of clinical trials, (2) to compare these findings with those of a similar survey undertaken more than a decade earlier, and (3) to explore predictors associated with key concepts of interest associated with clinical trials.

Design: The palliative care clinician's attitudes to clinical research survey undertaken in 2007 formed the basis of a repeat survey conducted in 2019.

Setting/Participants: Australian and New Zealand palliative care practitioners were surveyed.

Results: Surveys were completed by 135 palliative care practitioners. Comparing results of the current study and those findings of more than a decade earlier revealed that attitudes have either not substantially changed or indeed in some areas have become less accepting of clinical trials. This is despite the dramatic increase in the volume of research carried out within palliative care over the last decade.

Conclusion: Our survey suggests that the reasons for engagement in research are complex and likely to differ according to local conditions. Careful attention to understanding of the local environment and particularly the attitudes of local practitioners is likely to be essential to be successful in this endeavour.

8 August 2022

How can advance care planning tools help young people's voices be heard?

Trang J, Herbert A, Sansom-Daly UM.

The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences, enabling health-care professionals to ensure they are aligned with their planned course of treatment. This process, often undertaken within the context of the child's family, empowers children to participate in decisions and experience the dignity of self-determination. It also facilitates an increased understanding between the CYP and those involved in their care. The objectives of this paper are to highlight the importance of these conversations for paediatricians and identify barriers, both real and perceived, that may prevent them from engaging with a CYP about their preferences for future care including focusing more on discussion with the parents, and concern about or not having the skills to engage the child in such sensitive conversations. Triggers that can prompt clinicians to undertake ACP are also discussed. A further complexity is that after seeking their perspective, it may become apparent that the CYP may hold different views and perspectives to their parents and/or clinician. This review article will especially examine elements of end-of-life conversations that are critical to support the important goal of listening to the voice of the CYP. This includes considerations around timing, legal aspects, ethical tensions that arise when amplifying a child's voice, clinician/team-member roles, clinical process considerations, and the use of specific interventions and ACP tools to facilitate these conversations with CYP.

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Last updated 20 July 2022