Objectives There is a growing need to enhance healthcare providers' spiritual care competence, including for people receiving palliative care. A preceding study of predictors of spiritual care competence in a general group of nurses found that more competent nurses rated significantly higher in spiritual training adequacy, frequency of spiritual care provision, and personal spirituality than other nurses; like the demographic variables of level of education, length of nursing experience, and sex, confidence and comfort in providing spiritual care were not related to spiritual care competence. The current study aimed to replicate these relationships in a sample of palliative care nurses. This sample also allowed the testing of a hypothesis that palliative care nurses will tend to subscribe to more competent understandings of spiritual care.Methods Data were collected from a convenience sample of Australian palliative care nurses who completed an anonymous, online survey. The survey provided qualitative data about what spiritual care means for them and quantitative data regarding nurse characteristics. The qualitative data were used to create sub-groups of nurses based on their understanding of spiritual care and the quantitative data were used to construct a profile of nurse characteristics for each sub-group. The replication analysis determined whether a statistical difference in nurse characteristics existed across sub-groups. The hypothesis testing compared levels of spiritual care understanding across the general and palliative care samples of nurses.Results While the results of the palliative care sample are largely concordant with those obtained in the general sample, the current study amends "training adequacy" as a predictor of spiritual care competence to "experience (whether on-the-job or training) in caring for the dying." The study hypothesis was supported.Significance of results The results can be used to assess and develop competence in spiritual care for palliative care nurses.
AIM(S):To develop a care-bundle of non-pharmacological strategies with the potential to prevent constipation in people with dementia in Residential Aged Care (RAC). DESIGN:Mixed-methods intervention development study using Modified Delphi and co-design, informed by evidence, current constipation prevention practices and stakeholder collaboration to define best practice. METHODS:The draft bundle was developed using evidence from a scoping review, consultations with aged care professionals and staff at two RAC homes and field observations. It was then refined through expert and lived-experience panels via an online Modified Delphi survey (rating relevance, acceptability and feasibility) and a face-to-face workshop to finalise items for the constipation prevention care-bundle. DATA SOURCES:Health data, interviews, observations, surveys and workshops. RESULTS:The draft care-bundle comprised 24 items; 13 reached ≥ 78% agreement in the Modified Delphi, including dietitian consultation, adequate fibre, individualised hydration and toileting plans, beverage cart, constipation risk assessment, privacy during toileting, dementia-friendly signage, toileting positioning, contrasting toilet seat, electronic alerts, staff education and resident/family information. CONCLUSION:An evidence-informed and co-designed care-bundle was co-developed with potential to prevent constipation in residents with dementia. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE:This research has implications for nursing practice by offering an alternative to reliance on pharmacological strategies for preventing constipation in people with dementia. IMPACT:This co-designed and evidence-informed care-bundle has potential to reduce the incidence of constipation among the growing population with dementia. To ensure sustained use, it was co-designed with stakeholders to be fit-for-purpose. REPORTING METHOD:There were no reporting guidelines for this co-design study identified. PATIENT OR PUBLIC CONTRIBUTION:End-users, including frontline staff and older people receiving care, as well as carers of people with dementia, were engaged in the co-design as equal partners in the constipation prevention care-bundle development process.
BACKGROUND:Breathlessness is a debilitating symptom affecting many adults, yet its prevalence and correlates are not well summarised. This review synthesised evidence on breathlessness prevalence, correlates and assessment methods across general and clinical populations. METHODS:We undertook an umbrella review and updated systematic review using a comprehensive search of three databases up to January 2025. The umbrella review incorporated existing systematic reviews and meta-analyses, while the updated systematic review and meta-analysis included original studies published after the most recent eligible review. RESULTS:The umbrella review encompassed 10 reviews conducted between 2010 and 2025, incorporating 315 studies. The primary tool for assessing self-reported breathlessness was the Medical Research Council questionnaire and its modified version (mMRC). The prevalence of breathlessness ranged from 0.9% to 61.6% in general populations and from 20.4% to 87% in clinical populations. Six categories of breathlessness correlates were identified: sociodemographic, physiological, clinical, psychological, environmental and radiological/pathological factors. An updated systematic review and meta-analysis found 15 studies published between 2021 and 2024 reporting prevalence of breathlessness. Using the most common criterion of an mMRC score ≥2, the pooled prevalence was 12.5% (range 3.7-29.5%) in general populations and 37.5% (range 27.5-48.6%) in clinical populations. These studies reported diverse correlates of breathlessness, including psychological and clinical factors. DISCUSSION:Substantial variability exists in the prevalence and correlates of breathlessness, emphasising its complexity and multifaceted nature. This review highlights the need for standardised assessment of breathlessness to assess prevalence and comprehensive approaches to address its diverse factors.
Background:The aim of this manuscript was to describe the frequency and types of nurse-identified needs, recommendations, and referrals delivered to intervention-arm carers of patients with high-grade glioma (HGG) during monthly nurse-led telephone assessments in the Care-IS randomized controlled trial. Methods:Primary carers of patients diagnosed with HGG (≤2 months prior) and undergoing active treatment were randomized to: a 12-month Care-IS intervention; or, a control group. Carers randomized to the intervention were included in this sub-analysis. Nurses recorded carers' needs and made recommendations and referrals. Data analysis descriptively explored categories of needs, recommendations, or referrals. Results:An initial Nurse Telephone Assessment (NTA) was conducted with carers (N = 92) with drop-out related to time constraints, patient deterioration or death, or study withdrawal (N = 10 at month 10). Nurses identified ≥1 need, recommendation, or referral during the majority (≥90%) of NTAs. Up to 6 months, the most common needs were: dealing with treatment and side effects (74%-85%), understanding physical symptoms and side effects (60%-76%), mental and behavioral changes (53%-67%), and caring for yourself (51%-68%). The top recommendations were: tailored resources from the Care-IS resource manual (81%-96%), community-based support (47%-65%), medical specialist and clinical care (39%-56%), and additional information provision (30%-38%). The top referrals were for medical specialists and clinical care (27%-48%). Palliative care was the main recommendation (29%) and referral (19%) at months 9-10. Conclusions:NTAs identified a high frequency of carer unmet needs. Carer needs were highly variable, patient-focused, and changed over time. Nurses must accommodate a broad range of recommendations from providing additional information to making health/community referrals.
Background: Clinical trials are underway of medicinal cannabis for cancer-related anorexia, using various formulations and modes of administration. Objectives: To explore the benefits and burdens of vaporized medicinal cannabis flower bud for anorexia from the perspectives of trial participants with advanced cancer and their carers. Design: People with advanced cancer enrolled as inpatients in a Phase I/IIb clinical trial, and their carers participated in face-to-face semi-structured interviews. Analysis used the framework method. Setting: Inpatient specialist palliative care. Results: Ten out of 12 trial participants and 6 carers were interviewed. All perceived benefits to eating but, in two cases, this arose from reduced nausea rather than appetite stimulation. Carers sometimes perceive more benefit than patients. Psychoactive effects were well-tolerated and even enjoyed. Burdens included throat irritation and adverse smell and taste, but these were transient. Conclusions: Vaporized flower bud warrants comparison with other formulations/modes of medicinal cannabis for cancer-related anorexia.
In Queensland, Australia, adults in custodial facilities do not have discretionary access to over-the-counter (OTC) medications for mild pain relief and management. This study evaluated a trial allowing prisoners in male and female units at a regional Queensland correctional facility to purchase OTC medications from the prison store. The trial aligned with human rights legislation, international obligations, and the requirement for community equivalence of health care for prisoners. Queensland is the first jurisdiction in Australasia to undertake such a trial. We analyze the results from focus groups and surveys, comparing male and female prisoner experiences, by applying a gender impact assessment to examine pain management as a gender and health rights issue. Pain is gendered, and women’s pain is often downplayed, not taken seriously, or not treated appropriately. Prisoners reported that being able to manage their pain relief gave them agency and decision-making ability that affirmed their human and health rights while living in a controlling environment. While this initiative has a positive impact on gender equality—because women are better able to self-manage pain—there are continuing opportunities to improve women’s health care and address challenges of equivalence and the gender pain gap in prison systems.
INTRODUCTION:Surgery is an essential part of cancer treatment, particularly for localised solid tumours. Geriatric assessments (GA) with tailored interventions or comprehensive GA (CGA) can identify frailty factors and needs of older adults with cancer, assisting treatment decisions and care strategies to reduce postoperative complications. This systematic review summarises the effects of GA/CGA compared to usual care for older adults with cancer intended for surgery: their impact on treatment decisions, supportive care interventions, postoperative complications, survival, and health-related quality of life (HRQOL). MATERIALS AND METHODS:We conducted a systematic search of MEDLINE, EMBASE, CINAHL, and PubMed (January 2000-October 2022) for randomised controlled trials (RCTs) or cohort studies with a comparison group on the effects of GA/CGA in older adults with cancer (≥65 years) intended for surgery. This systematic review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Due to heterogeneity in study designs and reporting, a meta-analysis was not possible; results are narratively described. RESULTS:From 12,440 citations, 312 were selected for full-text review. Thirteen studies reporting on 12 trials were included for analysis: four RCTs and eight cohort studies with comparison groups (three prospective, five retrospective). RCTs ranged in sample size (122-475; mean 249), with variability in who performed GA/CGA, disciplines involved, and team integration. Primary outcomes included impact of GA/CGA on postoperative delirium (two studies), Clavien-Dindo (CD) grade II-V postoperative complications (one study), hospital length of stay (one study), and a composite criterion including mortality, functional impairment, and weight loss (one study). All RCTs scored high for risk of bias due to underpowering for their primary outcome; none met their primary endpoint. After adjustment for prespecified factors in secondary analyses, one RCT found GA/CGA significantly reduced the odds of postoperative complications (CD grade I-V) (adjusted-OR: 0.33, 95 %CI: 0.11-0.95; p = 0.05) due to fewer grade I-II complications. One RCT reported no significant difference between groups in HRQOL: intervention patients reported less pain at discharge, but this difference disappeared at three-month follow-up. DISCUSSION:Well-powered, high-quality trials are needed to determine the impact of GA/CGA on optimising surgical treatment decisions, supportive care and postoperative outcomes for older adults with cancer.
OBJECTIVES:Previous studies have shown that nurses' spiritual care competence is related to characteristics of personal spirituality, training adequacy, and comfort, confidence, and frequency of provision of spiritual care. However, these studies assumed that all participants understood spiritual care in the same way, and used self-ratings of spiritual care competence, which are problematic. Our previous study found that spiritual care was understood in 4 qualitatively different ways that can be arranged in order of competence. This study aimed to re-examine the relationships between nurse characteristics and spiritual care competence, using spiritual care understanding as a proxy for competence. METHODS:Data was collected from a convenience sample of nurses who completed an anonymous, online survey. The survey provided qualitative data about what spiritual care means for them. The survey also provided quantitative data regarding nurse characteristics. This study created sub-groups of nurses based on their understanding of spiritual care, and used the quantitative data to construct a profile of nurse characteristics for each sub-group. Kruskal-Wallis statistical tests determined whether nurse characteristics differed across the 4 sub-groups. RESULTS:Spiritual care competence was not related to confidence or comfort in providing spiritual care. Relationships with spirituality, training adequacy, and frequency of provision of spiritual care were not linear; i.e., higher competence did not always correspond with higher scores of these characteristics. SIGNIFICANCE OF RESULTS:The results raise concerns about the construct validity of using comfort and confidence as estimates of spiritual care competence. That the relationships between competence and spirituality, training adequacy, and frequency of spiritual care provision was not as linear as portrayed in extant literature, suggests that outcomes of training may depend on the type of spiritual care understanding subscribed to by training participants. The findings offer insights about how nurses could achieve high levels of spiritual care performance.
Background Improving palliative care for inpatients is urgently needed. Data from patient-reported experience measures (PREM) can assist in identifying areas for focused improvement. This study aimed to describe patient reported experience of care in inpatients with palliative care needs, to inform a baseline understanding of care experience and identify key areas for improvement. Methods Cross-sectional study design where inpatients with palliative care needs were invited to complete ‘consideRATE,’ a patient reported experience measure of care, over six months in 2022. Inpatients with palliative care needs receiving care on an oncology, general medicine/renal and general medicine/respiratory ward ( n = 3) at an Australian metropolitan hospital were screened for eligibility. Carers could provide proxy responses where inpatients were unable to participate. Descriptive statistics were used to analyse quantitative ratings, whilst free text responses were analysed using integrated thematic analysis. Results One-hundred and twenty participants (108 patients and 12 carers) completed consideRATE. The questions with the highest number of ‘very good’ responses were attention to symptoms, attention to feelings and attention to what matters most; the questions with the lowest number of ‘very good’ responses was attention to patients’ affairs, what to expect, and the environment of care. Almost half ( n = 57, 48%) indicated that attention to patients’ affairs ‘did not apply’ to their inpatient stay. Analysis of 532 free text responses across 8 questions highlighted the importance of feeling supported, feeling informed, feeling heard and navigating the clinical environment. Conclusion Enabling inpatients with palliative care needs to provide feedback about their experience of care is one method of ensuring improvements matter to patients. Supporting clinical teams to understand and use these data to make tailored improvements is the next step in this multi-phase research.
ObjectivesTo examine factors associated with indicators of potentially burdensome care provided in hospital, and use of hospital services in the last 12 months of life for people who had a death from cancer. ApproachA population-based retrospective cohort study of people aged ≥20 years with a cancer-related cause of death during 2014-2019 in New South Wales, Australia using linked hospital, cancer registry and mortality records. Ten indicators of potentially burdensome care were examined. Multinominal logistic regression examined predictors of a composite measure of potentially burdensome care, derived by summing 4 indicators: >1 ED presentation; >1 hospital admission; ≥1 ICU admission within 30 days of death; died in acute care (scored as 0, 1 ≥2). ResultsOf the 80,005 cancer-related deaths, 69.1% had none, 20.0% had 1 indicator, and 10.9% had ≥2 indicators of potentially burdensome care. Compared to having no indicators of potentially burdensome care, people who smoked, lived in rural areas, were most socially economically disadvantaged, and had their last admission in a private hospital were more likely to experience potentially burdensome care. Older people (≥55 years), females, people with 1 or ≥2 Charlson comorbidities, people with neurological cancers, and people who died in 2018-2019 were less likely to experience potentially burdensome care. Conclusions and implicationsThis study shows the challenge of delivering health services at end-of-life. Opportunities to address potentially burdensome EOLC could involve taking a person-centric approach to integrate oncology and palliative care around individual needs and preferences.
The Stop Cancer PAIN Trial was a phase III pragmatic stepped wedge cluster randomised controlled trial which compared effectiveness of screening and guidelines with or without implementation strategies for improving pain in adults with cancer attending six Australian outpatient comprehensive cancer centres (n = 688). A system for pain screening was introduced before observation of a ‘control’ phase. Implementation strategies introduced in the ‘intervention’ phase included: (1) audit of adherence to guideline recommendations, with feedback to clinical teams; (2) health professional education via an email-administered ‘spaced education’ module; and (3) a patient education booklet and self-management resource. Selection of strategies was informed by the Capability, Opportunity and Motivation Behaviour (COM-B) Model (Michie et al., 2011) and evidence for each strategy’s stand-alone effectiveness. A consultant physician at each centre supported the intervention as a ‘clinical champion’. However, fidelity to the intervention was limited, and the Trial did not demonstrate effectiveness. This paper reports a sub-study of the Trial which aimed to identify factors inhibiting or enabling fidelity to inform future guideline implementation initiatives. The qualitative sub-study enabled in-depth exploration of factors from the perspectives of personnel at each centre. Clinical champions, clinicians and clinic receptionists were invited to participate in semi-structured interviews. Analysis used a framework method and a largely deductive approach based on the COM-B Model. Twenty-four people participated, including 15 physicians, 8 nurses and 1 clinic receptionist. Coding against the COM-B Model identified ‘capability’ to be the most influential component, with ‘opportunity’ and ‘motivation’ playing largely subsidiary roles. Findings suggest that fidelity could have been improved by: considering the readiness for change of each clinical setting; better articulating the intervention’s value proposition; defining clinician roles and responsibilities, addressing perceptions that pain care falls beyond oncology clinicians’ scopes of practice; integrating the intervention within existing systems and processes; promoting patient-clinician partnerships; investing in clinical champions among senior nursing and junior medical personnel, supported by medical leaders; and planning for slow incremental change rather than rapid uptake. Future guideline implementation interventions may require a ‘meta-implementation’ approach based on complex systems theory to successfully integrate multiple strategies. Registry: Australian New Zealand Clinical Trials Registry; number: ACTRN 12615000064505; data: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspxid=367236 isReview=true .
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.
BACKGROUND:Supporting clinical teams to improve care for inpatients with palliative care needs and their carers is a known priority. Patient reported experience measures (PREMs) may assist in improvement work. Evidence about how to collect and feedback PREM data for this population and context is required. AIM:To determine the feasibility of implementing a brief, validated PREM, consideRATE and appraise its acceptability as perceived by inpatients with palliative care needs, their carers and clinicians. DESIGN:A prospective study using: 1) PREM administration, screening log and field note completion; and; 2) a focus group with clinicians. SETTING/PARTICIPANTS:Eligible participants recruited from three wards (cancer care and internal medicine) of an Australian tertiary metropolitan hospital. Participants included patients screened to have palliative care needs (using the SPICTTM criteria), their carers and multidisciplinary clinicians (including clinical managers). RESULTS:Feasibility: A 71% response rate was achieved (n = 80 from 112 eligible patients approached). Mean screening time to inform eligible patients for PREM completion was 7.5 min. More than half of eligible participants (n = 47, 59%) opted for electronic completion of consideRATE and mean completion time was 6.12 min. A third of participants required assistance for PREM completion (n = 27, 34%). Score distribution varied across response options, albeit with a positive skew towards 'very good' and 'good'. Two thirds of respondents (n = 50, 62.5%) provided ⩾1 free-text response. Acceptability: Clinicians valued consideRATE data noting feedback needed to be: accessible, supported by free-text and responsive to local contexts. CONCLUSIONS:It is feasible to implement consideRATE for inpatients with palliative care needs. Clinicians note consideRATE data is acceptable in informing improvement foci.
Purpose: To identify potential gaps in geriatric radiation oncology (RO) education worldwide, as measured by geriatric oncology (GO) content within postgraduate RO training program (TP) curricula across 8 focus countries. Methods and materials: The need for improved education around GO is internationally recognized and is a key strategic priority of the International Society of Geriatric Oncology (SIOG).Two reviewers undertook a systematic scoping review from March to September 2023. Focus countries were selected using predefined selection criteria based on national radiation therapy (RT) service provision, RT access and post-graduate specialty training standards. This review is in accordance with evidence-based curriculum design methodology and represents the initial phase i.e., problem identification and needs assessment. Results: Overall RO TP and curriculum elements varied by jurisdiction. Common elements included length of training, summative assessments and prerequisite requirements. Considerable variability exists across TPs around identified learning outcomes, content, TP organization, training networks and accreditation.Across 6 TPs, only 2 had any documented GO curriculum content. Of these, only one contained geriatric RO content scoring moderate to high based on accepted quality benchmarks. Outside official RO TPs, there is considerable GO online education content, including face to face courses, peer-reviewed articles, learning materials and resources relevant to RO postgraduate training worldwide. However accessibility to these learning interventions may be region specific and content is not standardized. Conclusions: As expected, this systematic scoping review has identified significant gaps in GO education within RO TPs worldwide. These findings represent an essential step in the development of evidence-based recommendations for updating standards for GO training within RO training programs and establishing a globally accepted, standardized benchmarks for minimal geriatric RO education. In turn, this will ensure future radiation oncologists are able to deliver a high standard of care to and improve outcomes for older people with cancer.
Background Concerning levels of stress, strain, and poorer mental health are observed in family carers of patients diagnosed with high-grade glioma (HGG). Understanding the reported unmet needs of these carers will enable future interventions to address such needs to improve their preparedness for care and well-being. In this secondary analysis, we aimed to explore: (i) what carers of people with HGG perceive could improve their preparedness to care; and (ii) what needs carers reported they required additional support with.Methods Responses from 188 carers of patients with HGG participating in a randomized controlled trial of the Care-IS intervention were analyzed to identify reported unmet needs. Of this larger sample, 92 participants answered a qualitative question seeking to identify perceived unmet needs in carer preparedness over 12 months. These responses comprised the data for the current secondary analysis. Content analysis was used to analyze the qualitative data and observe trends across participant responses.Results Five overarching themes were identified: carer needs, providing emotional and practical care, coping with uncertainty, coping with the consequences of illness progression, and processing and supporting end-of-life care. Notably, the content analysis identified differences in response numbers between groups in the Care-IS trial, particularly with the control group having more needs regarding illness progression and end-of-life care.Conclusions Future interventions aimed at improving the well-being and preparedness of carers of people with HGG should consider providing better support centered on carer needs, their changed circumstances, living with uncertainty, and care transition.
BACKGROUND:Almost half the world's population lives in rural areas. How best to provide palliative care to rural populations is unclear. Privileging rural patient and family voices about their experiences of receiving care delivered via rural palliative care models is necessary. AIM:To identify the key palliative care elements that rural patients with palliative care needs and their families perceive to be critical to receiving the care and support they need to live well. DESIGN AND DATA SOURCES:A systematic review and meta-synthesis registered with Prospero (CRD42020154273). Three databases were searched in June 2024. Raw qualitative data were extracted and analysed using Thomas and Harden's three-stage thematic synthesis methodology. Findings reported according to the PRISMA statement. RESULTS:Of the 10,834 identified papers, 11 met the inclusion criteria. Meta-synthesis of extracted, raw quotes (n = 209) revealed three major themes: (1) Honouring the patient's existing relationship with their General Practitioner (GP); (2) strategically timed access to specialist services, clinicians and equipment is critical; and (3) a need to feel safe, prepared and supported. CONCLUSION:The strategic inclusion of specialists alongside primary care providers is integral to optimising rural palliative care models. General Practioners are central to these models, through being embedded in their communities and as the conduit to specialist palliative care services. Rural palliative care patients and families value responsive care, trajectory signposting, effective communication, 24/7 support and recognise the value of virtual health. Globally, positive public policy and funding is critical to ensuring access to GP-led, specialist-supported, rural palliative care models.