Latest Australian Research

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.

 

2 November 2020

Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

Bindley K, Lewis J, Travaglia J, DiGiacomo M.

Background:
Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life.

Aim:
To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage.

Design:
An interpretive descriptive study employed in-depth, qualitative interviews to explore participants' reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach.

Setting/participants:
Twenty-one workers employed within three public services in Western Sydney were recruited.

Results:
Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural.

Conclusions:
Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

2 November 2020

Palliative care needs and utilisation of different specialist services in the last days of life for people with lung cancer

Ding J, Johnson CE, Qin X, Ho SCH, Cook A.

Objectives:
To (a) compare palliative care needs of lung cancer patients on their final admission to community-based and inpatient palliative care services; and (b) explore whether and how these care needs affect their utilisation of different palliative care services in the last days of life.

Methods:
Descriptive study involving 17,816 lung cancer patients who received the last episode of palliative care from specialist services and died between 1 January 2013 and 31 December 2018.

Results:
Both groups of patients admitted to community-based and inpatient palliative care services generally experienced relatively low levels of symptom distress, but high levels of functional impairment and dependency. "Unstable" versus "stable" palliative care phase (Odds ratio = 11.66; 95% Confidence Interval: 9.55-14.24), poorer functional outcomes and severe levels of distress from many symptoms predicted greater likelihood of use of inpatient versus community-based palliative care.

Conclusions:
Most inpatient palliative care admissions are not associated with high levels of symptom severity. To extend the period of home care and rate of home death for people with lung cancer, additional investment is required to improve their access to sufficiently skilled palliative care staff, multi-disciplinary teams and 24-hour home support in community settings.

2 November 2020

An advance care planning educational intervention for healthcare workers in a HIV service

Williams E, Collins D, Vujovic O, Bulda H, F Hoy J. 

No abstract available

2 November 2020

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review

Gill FJ, Hashem Z, Stegmann R, Aoun SM.

Background:
Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs.

Aim:
To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs.

Design:
A scoping review.

Data sources:
MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF).

Results:
Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs.

Conclusion:
Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

26 October 2020

What factors influence organisational readiness for change?

Implementation of the Australian clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients (ADAPT CP)

Geerligs L, Shepherd HL, Butow P, Shaw J, Masya L, Cuddy J; ADAPT Program Group, Rankin NM.

Aims:
Translation of evidence-based psycho-oncology interventions into routine care can significantly improve patient outcomes, yet effective implementation remains challenging due to numerous real-world barriers. A key factor that may influence implementation is organisational readiness for change. This mixed method study sought to identify factors associated with organisational readiness for implementing the Australian clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients (ADAPT CP).

Methods:
We collected data from multidisciplinary staff across six Australian cancer services who were preparing to implement the ADAPT CP. Services were categorised as having 'high' versus 'mid-range' organisational readiness based on a median split on the Organizational Readiness for Implementing Change (ORIC) questionnaire (score range = 12-60). Qualitative data from the semi-structured interviews based on the Promoting Action Research in Health Services (PARiHS) framework were analysed thematically and compared for services with high- versus mid-range organisational readiness.

Results:
Three services with high- (mean ORIC range, 52.25-56.88), and three with mid-range (range, 38.75-46.39) organisational readiness scores were identified. Staff at services reporting higher readiness described a more collaborative and proactive service culture, strong communication processes and greater role flexibility. They also reported greater confidence in overcoming anticipated barriers and clearer strategies for addressing issues.

Conclusions:
Levels of organisational readiness were related to distinct qualitative themes. Targeting these issues in services where readiness is mid-range or low prior to full-scale roll-out may improve staff levels of confidence and efficacy in implementing psycho-oncology-focused interventions.

26 October 2020

The utilization of allied and community health services by cancer patients living in regional and remote geographical areas in Australia

Parikh DR, Diaz A, Bernardes C, De Ieso PB, Thachil T, Kar G, Stevens M, Garvey G.

Introduction:
Cancer patients in Australia's Northern Territory (NT) face unique challenges to accessing cancer-related community and allied health services (referred here as 'health services'). This is in part due to the NT's unique geographic, socioeconomic and demographic profile. This paper describes the use of health services by cancer patients in the NT.

Methods:
Adult cancer patients attending appointments at a cancer centre in Darwin, NT and who were diagnosed within the past five years were invited to participate in face-to-face interviews about their use of allied and community health services. A descriptive analysis of health services utilization was conducted.

Results:
Of the 76 participants interviewed, 63% identified as non-Indigenous, 53% female and 45% lived in very remote areas. Mean age at interview was 58.7 years (SD 13.2). Overall, 82% of participants utilized at least one health service since their cancer diagnosis. All Indigenous participants used at least one service, while 28% of non-Indigenous participants did not use any health service. The services most frequently used by participants were community services (42%) and information sources (40%).

Conclusion:
The findings from this study suggest there is variation in the type of community and allied health services used by NT cancer patients across clinical and demographic groups (including Indigenous status). Further qualitative enquiry is needed to better understand this variation, which may reflect differences in service preference, accessibility, health literacy of patients or patient engagement. Such knowledge may inform service delivery improvements to better support cancer patients through their cancer care pathway.

26 October 2020

Integrated telehealth-assisted home-based specialist palliative care in rural Australia: A feasibility study

Jiang B, Bills M, Poon P.

Introduction:
This study assessed the feasibility of integrating telehealth-assisted home-based specialist palliative care (TH-SPC) into a rural community setting.

Methods:
This was a prospective mixed-methods pilot study conducted in rural Victoria, Australia. Newly engaged adult patients and their caregivers of a community palliative-care service received video consultations with metropolitan-located specialist palliative-care physicians, alongside standard care. Those eligible patients who failed to receive TH-SPC were treated as a control group upon analysis. Data were collected over three months and at 30 days prior to death. Feasibility outcomes included efficiency of process, user satisfaction, clinical outcome and health-care metrics.

Results:
A total of 21 patients completed the study, with an average age of 70.4 years and an average survival of 5.8 months. Fourteen patients received TH-SPC, and seven received standard care alone. Patient-caregiver feedback for TH-SPC showed a high level of overall satisfaction. Compared to standard care, the TH-SPC group demonstrated less functional decline from baseline at two weeks (Australia-modified Karnofsky Performance Status: -1.35 vs. -12.30, p = 0.067) and three months (8.48 vs. -10.79, p = 0.04) after the intervention. At 30 days prior to death, functional status remained better in the TH-SPC group, with fewer per capita community palliative-care nursing visits (5.46 vs. 9.32, effect size = 0.7), general practitioner visits (0.13 vs. 3.88, effect size = 1.34) and hospital admissions (0.02 vs. 0.2, effect size = 0.65).

Discussion:
TH-SPC was successfully integrated into rural community-based palliative care, with potential benefits in performance status preservation and health-care resource utilisation.

26 October 2020

Health services costs for lung cancer care in Australia: Estimates from the 45 and Up Study

Goldsbury DE, Weber MF, Yap S, Rankin NM, Ngo P, Veerman L, Banks E, Canfell K, O'Connell DL.

Background:
Of all cancer types, healthcare for lung cancer is the third most costly in Australia, but there is little detailed information about these costs. Our aim was to provide detailed population-based estimates of health system costs for lung cancer care, as a benchmark prior to wider availability of targeted therapies/immunotherapy and to inform cost-effectiveness analyses of lung cancer screening and other interventions in Australia.

Methods:
Health system costs were estimated for incident lung cancers in the Australian 45 and Up Study cohort, diagnosed between recruitment (2006-2009) and 2013. Costs to June 2016 included services reimbursed via the Medicare Benefits Schedule, medicines reimbursed via the Pharmaceutical Benefits Scheme, inpatient hospitalisations, and emergency department presentations. Costs for cases and matched, cancer-free controls were compared to derive excess costs of care. Costs were disaggregated by patient and tumour characteristics. Data for more recent cases identified in hospital records provided preliminary information on targeted therapy/immunotherapy.

Results:
994 eligible cases were diagnosed with lung cancer 2006-2013; 51% and 74% died within one and three years respectively. Excess costs from one-year pre-diagnosis to three years post-diagnosis averaged ~$51,900 per case. Observed costs were higher for cases diagnosed at age 45-59 ($67,700) or 60-69 ($63,500), and lower for cases aged ≥80 ($29,500) and those with unspecified histology ($31,700) or unknown stage ($36,500). Factors associated with lower costs generally related to shorter survival: older age (p<0.0001), smoking (p<0.0001) and unknown stage (p = 0.002). There was no evidence of differences by year of diagnosis or sex (both p>0.50). For 465 cases diagnosed 2014-2015, 29% had subsidised molecular testing for targeted therapy/immunotherapy and 4% had subsidised targeted therapies.

Conclusions:
Lung cancer healthcare costs are strongly associated with survival-related factors. Costs appeared stable over the period 2006-2013. This study provides a framework for evaluating the health/economic impact of introducing lung cancer screening and other interventions in Australia.

23 October 2020

The Development of the Australian National Palliative Care Clinical Studies Collaborative "Integrating Qualitative Research into Clinical Trials Framework"

Philip J, Collins A, Phillips J, Luckett T, Morgan DD, Lobb EA, DiGiacomo M, Kochovska S, Brown L, Currow DC.

Qualitative methodologies have multiple contributions to health research, including improving baseline understanding in new areas of enquiry; questioning existing assumptions; understanding viewpoints of specific subgroups; and offering complex, contextual information. While the role of qualitative research within mixed methods approaches is well documented, the contribution to clinical trial design and conduct is less well recognized. The Australian Palliative Care Clinical Studies Collaborative and Cancer Symptom Trials have developed a framework to detail how qualitative research might contribute to each key aspect of clinical trials. This practical framework provides real-world examples, including sample qualitative questions, to consider at each phase of controlled clinical trial development. As the number of randomized clinical trials in palliative care increases, a readily accessible approach to integrating qualitative research into clinical trial design and conduct is needed so that its full potential for improving study recruitment, conduct, outcomes, interpretation, and implementation may be realized.

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