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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.
Cotton A, Sayers J, Green H, Magann L, Paulik O, Sikhosana N, Fernandez R, Foster J.
Abstract
Objective: The objective of this review was to critically appraise and synthesize qualitative evidence of older persons' perceptions and experiences of community palliative care.
Introduction: Palliative care focuses on the relief of symptoms and suffering at the end of life and is needed by approximately 56.8 million people globally each year. An increase in aging populations coupled with the desire to die at home highlights the growing demand for community palliative care. This review provides an understanding of the unique experiences and perceptions of older adults receiving community palliative care.
Methods: A search of the literature across CINAHL (EBSCOhost), MEDLINE (Ovid), Embase (Ovid SP), Web of Science Core Collection, and Scopus databases was undertaken in July 2021 and updated November 1, 2022. Included studies were published in English between 2000 and 2022. The search for unpublished studies included ProQuest Dissertations and Theses. Study selection, quality appraisal, and data extraction were performed by 2 independent reviewers. Findings from the included studies were pooled using the JBI meta-aggregation method.
Results: Nine qualitative studies involving 98 participants were included in this review. A total of 100 findings were extracted and grouped into 14 categories. Four synthesized findings evolved from these categories: i) Older persons receiving palliative care in the community recognize that their life is changed and come to terms with their situation, redefining what is normal, appreciating life lived, and celebrating the life they still have by living one day at a time; ii) Older persons receiving palliative care in the community experience isolation and loneliness exacerbated by their detachment and withdrawal from and by others; iii) Older persons receiving palliative care in the community face major challenges managing prevailing symptoms, medication management difficulties, and costs of medical care and equipment; and iv) Older persons want to receive palliative care and to die at home; however, this requires both informal and formal supports, including continuity of care, good communication, and positive relationships with health care providers.
Conclusions: Experiences and perceptions of community palliative care vary among older adults. These are influenced by the individual's expectations and needs, available services, and cost. Older adults' input into decision-making about their care is fundamental to their needs being met and is contingent on effective communication between the patient, family, and staff across services. Policy that advocates for trained palliative care staff to provide care is necessary to optimize care outcomes, while collaboration between staff and services is critical to enabling holistic care, managing symptoms, and providing compassionate care and support.
Copyright © 2023 The Author(s). Published by Wolters Kluwer Health, Inc.
Fernando RA.
Purpose: Timely supportive and palliative care (SPC) integration in adolescent and young adult (AYA) cancer management is recommended in curative and palliative settings. However, multiple barriers exist to implementing this goal. Liverpool Cancer Therapy Center (LCTC) serviced a growing AYA (15-39 years) population without AYA-dedicated services and the vast majority receiving no SPC engagement. Concerned this was placing AYA patients' wellbeing at risk, we determined a cultural change was required and that the newly established AYA Supportive and Palliative Care (AYASPC) Service could facilitate this.
Methods: The AYASPC Service conducted a 6-month quality improvement project aiming to increase its referrals from a baseline average of one per month to four per month, to increase confidence in making SPC referrals and to enhance appreciation for specialized AYA care. Interventions included formalizing an AYASPC referral pathway with broad indications, and educating clinicians on holistic AYA care, the AYASPC Service's model of care (MoC) and AYASPC referral benefits.
Results: During the project, 27 AYASPC referrals were made. Referrals consistently exceeded the Service's baseline, and from 3 months onward exceeded the project target. Additionally, referrals were made earlier (29.6% at diagnosis), for a variety of cancer diagnoses with varied prognoses, and for indications beyond traditional issues of complex symptoms and end-of-life care. Clinicians also expressed greater confidence in supporting AYAs and making SPC referrals.
Conclusion: In a brief timeframe, the AYASPC Service's innovative and adaptable MoC and project interventions sustainably improved AYASPC access and affected a positive cultural shift around AYA care and advocacy.
Dai Y, Johnson CE, Ding J, Chen Y, Connolly A, Wang L, Daveson BA.
Background: A standardized national approach to routinely assessing palliative care patients helps improve patient outcomes. However, a quality improvement program-based on person centered outcomes within palliative care is lacking in Mainland China. The well-established Australian Palliative Care Outcome Collaboration (PCOC) national model improves palliative care quality. This study aimed to culturally adapt and validate three measures that form part of the PCOC program for palliative care clinical practice in China: The PCOC Symptom Assessment Scale (PCOC SAS), Palliative Care Problem Severity Scale (PCPSS), Palliative Care Phase.
Methods: A study was conducted on cross-cultural adaptation and validation of PCOC SAS, PCPSS and Palliative Care Phase, involving translation methods, cognitive interviewing, and psychometric testing through paired assessments.
Results: Cross-cultural adaptation highlighted the need to strengthen the link between the patient's care plan and the outcome measures to improve outcomes, and the concept of distress in PCOC SAS. Analysis of 368 paired assessments (n = 135 inpatients, 22 clinicians) demonstrated that the PCOC SAS and PCPSS had good and acceptable coherence (Cronbach's a = 0.85, 0.75 respectively). Palliative Care Phase detected patients' urgent needs. PCOC SAS and PCPSS showed fair discriminant and concurrent validity. Inter-rater reliability was fair for Palliative Care Phase (k = 0.31) and PCPSS (k = 0.23-0.30), except for PCPSS-pain, which was moderate (k = 0.53).
Conclusions: The Chinese version of PCOC SAS, PCPSS, and Palliative Care Phase can be used to assess outcomes as part of routine clinical practice in Mainland China. Comprehensive clinical education regarding the assessment tools is necessary to help improve the inter-rater reliability.
© 2024. The Author(s).
Smith S, Lowrie D, Dawes N.
Introduction: The compassionate communities' movement is a public health approach to end-of-life care that emphasises the integral role of communities in supporting and caring for dying persons and their informal carers. Although occupational therapists have well-established roles in palliative care teams, little is known about their potential in assisting in the formation and maintenance of compassionate communities.
Method: Data were gathered via semi-structured interviews with nine Australian occupational therapists with experience in specialist palliative care. Interview questions were based around the British Columbia Compassionate Community Ideal framework. Key themes were derived through qualitative descriptive analysis, blending deductive, and inductive reasoning.
Findings: Interviewees indicated that occupational therapists have a role in supporting compassionate communities that centres on the facilitation of networks and connections between palliative care professionals and in the promotion of informal care networks. The importance of education and awareness raising were also discussed as valuable to the development of community capacity. It was also suggested that occupational therapists have important skills to support dying persons and their caregivers to remain engaged and safe in their homes and communities, in a meaningful and sustainable way. However, many interviewees maintained a profession-centric view on control within compassionate communities, as opposed to approaches that are community led.
Conclusion: Findings offer early insights into the promise and potential of occupational therapists in supporting the compassionate communities' movement. However, education regarding the ethos of the compassionate communities' movement so as to facilitate a shift a
© 2024 The Authors. Australian Occupational Therapy Journal published by John Wiley & Sons Australia, Ltd on behalf of Occupational Therapy Australia.
Paulik O, Whitaker R, Mesuria M, Wong D, Swanson K, Green H, Sikhosana N, Fernandez R.
Objectives: The Supportive and Palliative Care Indicators Tool (SPICT™) has been used to identify patients at risk of deteriorating and dying within 1 year. Early identification and integration of advance care planning (ACP) provides the opportunity for a better quality of life for patients. The aims of this study were to identify the number of patients who were SPICT™ positive; their mortality rates at 6 and 12 months of the SPICT™ assessment; and level of adherence to ACP documentation.
Methods: A retrospective audit of the Supportive and Palliative Care database was conducted at an acute aged care precinct in a major metropolitan tertiary referral hospital in New South Wales, Australia. Data comprising demographics, clinical conditions, SPICT™ positivity and compliance with ACP documentation were collected. SPICT™-positive patients and mortality were tracked at 6 and 12 months, respectively.
Results: Data from 153 patients were collected. The mean age of the patients was 84.1 (±7.8) years, and the length of hospital stay was 10 (±24.7) (range 1-269) days. Approximately 37% were from residential care, and 80% had family deciding on their care. About 15% died during hospitalisation, and 48% were discharged to a care facility. The ACP documentation showed various levels of completion. Mortality rates at 6 and 12 months were 36% and 39%, respectively. Most patients (99%) were SPICT™-positive, with indicators correlating with higher mortality rates at both follow-ups.
Conclusions: The study emphasises the critical need for addressing ACP and palliative care among older patients with life-limiting conditions. It underscores the importance of timely discussions, documentation, and cessation of futile interventions.
© 2024 The Authors. Australasian Journal on Ageing published by John Wiley & Sons Australia, Ltd on behalf of AJA Inc’.
Last updated 16 January 2024