The impact of regular, low-dose, sustained-release morphine for chronic breathlessness on caregiver burden: An exploratory analysis of the BEAMS trial.

BACKGROUND: Chronic breathlessness adversely impacts people with chronic obstructive pulmonary disease and their caregivers (family and friends), who may, in turn, experience significant burden due to their caregiving role. Sustained-release morphine may reduce chronic breathlessness in some patients, which may have an impact on caregivers' perceived burden. AIM: To explore the impact on caregiver burden of active treatment of people with chronic breathlessness (modified Medical Research Council (mMRC) ⩾ 3) and chronic obstructive pulmonary disease (COPD) with regular, low-dose, sustained-release morphine within a multi-site, double-blind, randomised, placebo-controlled trial. DESIGN: Exploratory analysis of self-reported caregiver burden at baseline and end of week 3 in a randomised, double-blind, placebo-controlled study. Caregiver measures included: demographics and perceived burden (Zarit Burden Interview 12-item short-form questionnaire). Patient measures included: worst breathlessness and FitBitR-measures. SETTING/PARTICIPANTS: All consenting caregivers of trial patient participants in a multi-site study recruiting from palliative care and respiratory services. RESULTS: Caregivers (n = 49; 59% women; median age 68 years [IQR 50-75]) reported median baseline caregiver burden 12 [IQR 5-17], with 53% reporting high burden (⩾13). Eighty-four percent of caregivers reported no change in burden. In people whose worst breathlessness improved, caregiver burden moved in the same direction, though the correlation was not significant (rs = 0.25, p = 0.17). Conversely, caregiver burden worsened as patients' minutes lightly active increased, with the correlation being significant (rs = 0.56, p = 0.04). CONCLUSIONS: Caregivers reported high levels of caregiver burden, but patients' response to treatment in terms of their symptom and function may influence change in caregiver burden over a three-week period.

Management of pain in cancer patients- lessons from practices during the COVID-19: a qualitative study of cancer care providers' perspectives.

BACKGROUND: The ongoing COVID-19 pandemic has impacted health systems globally and affected managing many chronic conditions, including cancer. This study aimed to explore the perceptions of multi-disciplinary cancer care providers on how cancer pain management was affected by the COVID-19 pandemic. METHODS: Participants were eligible if they were cancer care providers of any specialty and discipline from two tertiary hospitals in Australia. Data were collected using semi-structured interviews to explore cancer care providers' perspectives on cancer pain management within COVID-19. Thematic analysis of interview transcripts used an integrated approach that started with inductive coding before coding deductively against a behaviour framework called the COM-B Model, which proposes that 'capability', 'motivation' and 'opportunity' are requisites for any behaviour. RESULTS: Twenty-three providers participated. Five themes were developed and interpreted from the analysis of data, namely: "Telehealth enables remote access to cancer pain management but also created a digital divide", "Access to cancer pain management in the community is compromised due to the pandemic", "COVID-19 negatively impacts hospital resource allocation", "Patients were required to trade off cancer pain management against other health priorities" and "Hospital restrictions result in decreased social and psychological support for patients with cancer pain". CONCLUSIONS: The landscape of cancer pain management in the Australian health system underwent substantial shifts during the COVID-19 pandemic, with lasting impacts. Cancer care providers perceived the pandemic to have significant adverse effects on pain management across multiple levels, with repercussions for patients experiencing cancer-related pain. A more adaptive health system model needs to be established in the future to accommodate vulnerable cancer patients.

Factors influencing fidelity to guideline implementation strategies for improving pain care at cancer centres: a qualitative sub-study of the Stop Cancer PAIN Trial.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Future guideline implementation interventions may require a 'meta-implementation' approach based on complex systems theory to successfully integrate multiple strategies. TRIAL REGISTRATION: Registry: Australian New Zealand Clinical Trials Registry; number: ACTRN 12615000064505; data: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspxid=367236&isReview=true .

Nurses' encounters with patients having end-of-life dreams and visions in an acute care setting - A cross-sectional survey study.

AIM: This study aimed to estimate the proportion of acute care nurses witnessing end-of-life dreams and visions or having these reported by a patient or relative, and to canvass their related attitudes and beliefs. DESIGN: A cross-sectional survey study was conducted from February 2023 to May 2023. SETTING/PARTICIPANTS: Participants were medical and surgical nurses from a 200-bed acute care hospital in metropolitan Australia. RESULTS: Fifty-seven nurses participated from a workforce of 169 (34% response rate), of whom 35 (61%) reported they had encountered end-of-life dreams and visions. The nature of end-of-life dreams and visions encountered was similar to those reported in previous studies by patients and clinicians. Nurses generally held positive attitudes towards end-of-life dreams and visions but identified an unmet need for education and training on this aspect of end-of-life care. CONCLUSION: Our results suggest that nurses in acute care encounter end-of-life dreams and visions in a similar proportion to oncology and long-term care but lower than in palliative care settings. Education and training regarding end-of-life dreams and visions are needed to ensure the provision of comprehensive, patient-centred end-of-life care. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. IMPACT: Research in sub-acute and long-term care settings suggests that end-of-life dreams and visions are a common accompaniment to the dying process. No research has yet focused on the acute care setting, despite this being the place of death for the majority of people in most high-income countries. This study demonstrates that acute care nurses encounter end-of-life dreams and visions in similar proportions to oncology and long-term care nurses but lower than palliative care nurses. Acute care nurses would benefit from education and training regarding end-of-life dreams and visions to enable the provision of holistic person-centred end-of-life care. REPORTING METHOD: This study was reported using the STROBE Checklist for cross-sectional studies.

A qualitative study of specialist multidisciplinary clinician perspectives on barriers/facilitators to care for children with brain cancer and their families: "We're a little bit different to our adult counterparts".

OBJECTIVES: Children with brain cancer and their families have complex care needs throughout diagnosis, active treatment, long-term survivorship, and the palliative phase of illness. This study aimed to explore the perspectives of Australian specialist clinicians on barriers and facilitators to health care for children with brain cancer and their families. METHODS: A qualitative approach was taken using semi-structured interviews. Eligible participants were clinicians of any discipline providing care to children with brain cancer and their families in Australia. Interviews were conducted by telephone and asked about perceived strengths and weaknesses in health care and available resources for this population. Qualitative content analysis used a directed approach with inductive refinement. RESULTS: Eleven clinicians participated, 5 of whom were medical, 3 nursing, and 3 allied health. The overarching theme was that the rarity and diversity of brain tumors in children confers challenges to care that lead to variation in practice. Participants reported having to adapt care from guidelines and patient/family resources designed for adults with brain cancer and children with other cancers, and rely on clinical and research networks. Specialist comprehensive cancer care was generally perceived to offer the best model for accommodating the unique needs of each child/family, but barriers to access were highlighted for children in remote Australia, and long-term follow-up was perceived to be inadequate regardless of where children lived. SIGNIFICANCE OF RESULTS: Until further brain cancer-specific paediatric guidelines become available, our findings highlight the need for communities of practice to share resources and reduce unwarranted variation. CONCLUSION: Future research should focus on developing and evaluating guidelines and other resources specific to children with brain cancer, as well as informing suitable models for long-term follow-up care for survivors.

"You're the only thing he comes out [of his room] for": A qualitative study of engagement between Laughter Care Specialists and families of people with dementia in long-term care.

OBJECTIVES: Family involvement in the lives of people who have dementia and live in long-term care is important, but family members may face challenges communicating and connecting with their loved one as dementia progresses. A type of therapeutic humor (Laughter Care) delivered by trained specialists aims to engage people with dementia who reside in long-term care through creative play and laughter. This study aimed to explore the perceptions of Laughter Care Specialists (LCSs) regarding families' engagement with the program. METHODS: Semi-structured interviews were conducted with LCSs (n = 8) and analyzed inductively using thematic analysis. RESULTS: Family members were reported to initially have varied degrees of openness toward Laughter Care, but often become more accepting after observing positive engagement with the person with dementia. Family members were perceived to benefit from the program through witnessing the person with dementia enjoy joyous and light interactions, learn new ways of communicating and connecting with the person with dementia, and engage in positive interactions at end of life. SIGNIFICANCE OF RESULTS: Laughter Care may provide family members with novel ways of communicating and connecting with people who have dementia at end of life as well as comfort into bereavement.

Defining research priorities and needs in cancer symptoms for adults diagnosed with cancer: an Australian/New Zealand modified Delphi study.

PURPOSE: This study asked consumers (patients, carers) and healthcare professionals (HCPs) to identify the most important symptoms for adults with cancer and potential treatment interventions. METHODS: A modified Delphi study was conducted involving two rounds of electronic surveys based on prevalent cancer symptoms identified from the literature. Round 1 gathered information on participant demographics, opinions and/or experience on cancer symptom frequency and impact, and suggestions for interventions and/or service delivery models for further research to improve management of cancer symptoms. In Round 2, respondents ranked the importance of the top ten interventions identified in Round 1. In Round 3, separate expert panels of consumers and healthcare professionals (HCPs) attempted to reach consensus on the symptoms and interventions previously identified. RESULTS: Consensus was reached for six symptoms across both groups: fatigue, constipation, diarrhoea, incontinence, and difficulty with urination. Notably, fatigue was the only symptom to reach consensus across both groups in Round 1. Similarly, consensus was reached for six interventions across both groups. These were the following: medicinal cannabis, physical activity, psychological therapies, non-opioid interventions for pain, opioids for breathlessness and cough, and other pharmacological interventions. CONCLUSIONS: Consumers and HCPs prioritise differently; however, the symptoms and interventions that reached consensus provide a basis for future research. Fatigue should be considered a high priority given its prevalence and its influence on other symptoms. The lack of consumer consensus indicates the uniqueness of their experience and the need for a patient-centred approach. Understanding individual consumer experience is important when planning research into better symptom management.

Description of patient reported experience measures (PREMs) for hospitalised patients with palliative care needs and their families, and how these map to noted areas of importance for quality care: A systematic review.

BACKGROUND: The global need for focused improvements in palliative care within the acute hospital setting is well noted. A large volume of evidence exists detailing what hospitalised patients with palliative care needs and their families note as important for high quality care. Patient Reported Experience Measures (PREMs) are one mechanism that hospitals could use to inform improvement work. To date there has not been a review of PREMs available for hospitalised patients with palliative care needs and/or their family, nor how they align with noted priorities for high quality care. AIM: To identify and describe PREMs designed for hospitalised patients with palliative care needs and their families; and their alignment with patient and family identified domains for high quality care. DESIGN: A systematic review. DATA SOURCES: A systematic search of CINAHL, Medline and PsycInfo was conducted up to September 23, 2022 and supplemented by handsearching article reference lists and internet searches. PREMs written in English and designed for patients with palliative care needs in acute hospitals were eligible for inclusion. Included PREMs were described by: summarising key characteristics; and mapping their items to domains noted to be important to hospitalised patients with palliative care needs and their families informed by outcomes from a published study completed in 2021. Evidence for psychometric properties were reviewed. RESULTS: Forty-four PREMs with 827 items were included. Items per PREM varied from 2 to 85 (median 25, IQR 13-42). Two-thirds (n = 534, 65%) of the items were designed for families and a third (n = 283, 34%) for hospitalised patients, and very few (n = 10, 1%) for both. Sixty-six percent of items measured person-centred care, 30% expert care and 4% environmental aspects of care. Available PREMs address between 1 and 11 of the 14 domains of importance for quality palliative care. PREMs had a median of 38% (IQR 25.4-56.3) of items >Grade 8 measured by the Flesch-Kincaid readability test, with Grade 8 or lower recommended to ensure health information is as accessible as possible across the population. CONCLUSIONS: Whilst 44 PREMs are available for hospitalised patients with palliative care needs or their families, a varied number of items are available for some domains of care provision that are important, compared to others. Few are suitable for people with lower levels of literacy or limited cognitive capacity due to illness.

Perspectives of inpatients with palliative care needs, their families, clinicians and key stakeholders on measuring quality of hospital care via patient experience measures: A qualitative study.

BACKGROUND: Globally there are high numbers of patients with palliative care needs receiving care in hospitals. Patient reported experience measures (PREMs) provide useful data to guide improvement work. How to implement PREMs within palliative care populations is unclear. AIM: To explore the perspectives of inpatients with palliative care needs, their family members, and the clinical team regarding the use of a generic PREM as compared with a PREM designed for people with palliative care needs and related implementation factors. DESIGN: A qualitative study was undertaken using semi-structured interviews and focus groups and integrated thematic analysis. SETTING/PARTICIPANTS: Inpatients with palliative care needs, their family members, and clinical team members were recruited from three wards in an Australian metropolitan hospital. RESULTS: Twenty-seven interviews and three focus groups were conducted. Six themes emerged: (1) PREMs for people with palliative care needs ought to be tailored to the needs of this population; (2) PREMs should appraise whether the needs of families have been met in addition to those of patients; (3) PREMs for inpatients with palliative care needs ought to be easy to use, brief and incorporate space for free text alongside each question; (4) Implementation of PREMs for people with palliative care needs ought to consider who administers these, when and how often; (5) PREM data need to be specific enough to inform process change and/or care provision; (6) Patients and families require meaningful feedback to encourage PREM completion. CONCLUSIONS: This study provides practical guidance for PREM selection and implementation to inform improvements to care for inpatients with palliative care needs.

Practice points for lymphoedema care in low- and middle- income countries developed by nominal group technique.

BACKGROUND: Lymphoedema is a common, distressing, and debilitating condition affecting more than 200 million people globally. There is a small body of evidence to guide lymphoedema care which underpins several lymphoedema clinical practice guidelines developed for high-income countries (HIC). Some of these recommendations are unlikely to be feasible in low-resource settings. AIM: To develop practice points for healthcare workers that optimise lymphoedema care in low- and middle-income countries (LMIC). METHODS: A nominal group technique (NGT) was undertaken to gain consensus on which content from HIC guidelines was important and feasible to include in practice points for LMIC, and other important advice or recommendations. Participants included experts, clinicians, and volunteers involved in lymphoedema care in LMIC. The NGT followed five key stages: silent 'ideas' generation, round-robin rationale, clarification, refinement and verification. The first, fourth and fifth stages were completed via email, and the second and third during a video meeting in order to generate a series of consensus based prevention, assessment, diagnosis, and management of lymphoedema in LMIC practice points. RESULTS: Of sixteen participants invited, ten members completed stage 1 of the NGT (ideas generation), of whom six contributed to stages 2 (round-robin) and 3 (clarification). All those who completed stage 1 also completed stages 4 (refinement) and 5 (verification). Practice points unanimously agreed on included Complex Decongestive Therapy (CDT) and good skin care, with management to be determined by lymphoedema stage. For podoconiosis-endemic areas, the use of socks and shoes was identified as very important in the prevention of non-filarial lymphoedema and other lymphoedema-causing conditions. Participants indicated that diagnosing lymphoedema using the lymphoscintigraphy and Indocyanine green (ICG) fluorescent lymphography was not possible due to unavailability and cost in LMIC. Surgical procedures for lymphoedema management were unanimously eliminated due to the unavailability of technology, limited workforce, and expensive cost in LMIC. CONCLUSION: The consensus-based practice points generated by this project provide healthcare workers with guidance on caring for people with lymphoedema in LMIC. Further development of workforce capacity is needed.

Assessing Patient-Reported Outcomes in Routine Cancer Clinical Care Using Electronic Administration and Telehealth Technologies: Realist Synthesis of Potential Mechanisms for Improving Health Outcomes.

BACKGROUND: The routine measurement of patient-reported outcomes in cancer clinical care using electronic patient-reported outcome measures (ePROMs) is gaining momentum worldwide. However, a deep understanding of the mechanisms underpinning ePROM interventions that could inform their optimal design to improve health outcomes is needed. OBJECTIVE: This study aims to identify the implicit mechanisms that underpin the effectiveness of ePROM interventions and develop program theories about how and when ePROM interventions improve health outcomes. METHODS: A realist synthesis of the literature about ePROM interventions in cancer clinical care was performed. A conceptual framework of ePROM interventions was constructed to define the scope of the review and frame the initial program theories. Literature searches of Ovid MEDLINE, Ovid Embase, Scopus, and CINAHL, supplemented by citation tracking, were performed to identify relevant literature to develop, refine, and test program theories. Quality appraisal of relevant studies was performed using the Mixed Methods Appraisal Tool. RESULTS: Overall, 61 studies were included in the realist synthesis: 15 (25%) mixed methods studies, 9 (15%) qualitative studies, 13 (21%) descriptive studies, 21 (34%) randomized controlled trials, and 3 (5%) quasi-experimental studies. In total, 3 initial program theories were developed regarding the salient components of ePROM interventions-remote self-reporting, real-time feedback to clinicians, and clinician-patient telecommunication. The refined theories posit that remote self-reporting enables patients to recognize and report symptoms accurately and empowers them to communicate these to clinicians, real-time feedback prompts clinicians to manage symptoms proactively, and clinician-patient telephone interactions and e-interactions between clinic encounters improve symptom management by reshaping how clinicians and patients communicate. However, the intervention may not achieve the intended benefit if ePROMs become a reminder to patients of their illness and are not meaningful to them and when real-time feedback to clinicians lacks relevance and increases the workload. CONCLUSIONS: The key to improving health outcomes through ePROM interventions is enabling better symptom reporting and communication through remote symptom self-reporting, promoting proactive management of symptoms through real-time clinician feedback, and facilitating clinician-patient interactions. Patient engagement with self-reporting and clinician engagement in responding to feedback are vital and may reinforce each other in improving outcomes. Effective ePROM interventions might fundamentally alter how clinicians and patients interact between clinic encounters.

Cultural factors affecting Chinese migrants' perceptions and responses to cancer pain and its pharmacological management: A convergent mixed-method study.

INTRODUCTION: Studies identified barriers of pain reporting and use of analgesics impeding Chinese cancer patients to achieve optimal pain relief. No research has yet explored these issues in Chinese migrants, where cultural differences may exacerbate the barriers. OBJECTIVES: To explore cultural factors influencing Chinese migrants' perspectives to cancer pain and its pharmacological management. METHOD: Informed by Leininger's Cultural Care Theory, focus groups and a short version of Barrier Questionnaire-Taiwan (S-BQT) were conducted in Mandarin or Cantonese, with 24 Chinese migrants receiving ambulatory cancer and/or palliative care services in Sydney, Australia. Integrated thematic analysis, descriptive statistics, and meta-inference were adopted for data analysis and integration. RESULTS: Participants suffered uncontrolled cancer pain negatively affecting their physical and psychosocial well-being. Most experienced moderate to severe pain, but only a third used opioids. Most adopted non-pharmacological approaches and half used Traditional Chinese Medicine. Participants scored a mean S-BQT of 3.28 (standard deviation ± 0.89). Three themes and seven sub-themes contributed to higher barriers of pharmacological pain management: (1) Philosophical health beliefs (cancer pain are self-provoked and body can self-heal); (2) Cultural values and beliefs (cancer pain is inevitable, and Chinese people express pain differently to local people); and (3) Conflicting views on the use of opioids (culture-related negative medication beliefs, Western biomedical model-related opioid fears, and opioids extend life for people with terminal cancer pain). CONCLUSIONS: Chinese migrants' responses to cancer pain and attitudes towards opioids are complex. Culturally congruent strategies are needed to overcome culture-related barriers and improve quality of cancer pain care in this population.

A systematic review of assessment approaches to predict opioid misuse in people with cancer.

CONTEXT: Cancer prevalence is increasing, with many patients requiring opioid analgesia. Clinicians need to ensure patients receive adequate pain relief. However, opioid misuse is widespread, and cancer patients are at risk. OBJECTIVES: This study aims (1) to identify screening approaches that have been used to assess and monitor risk of opioid misuse in patients with cancer; (2) to compare the prevalence of risk estimated by each of these screening approaches; and (3) to compare risk factors among demographic and clinical variables associated with a positive screen on each of the approaches. METHODS: Medline, Cochrane Controlled Trial Register, PubMed, PsycINFO, and Embase databases were searched for articles reporting opioid misuse screening in cancer patients, along with handsearching the reference list of included articles. Bias was assessed using tools from the Joanna Briggs Suite. RESULTS: Eighteen studies met the eligibility criteria, evaluating seven approaches: Urine Drug Test (UDT) (n = 8); the Screener and Opioid Assessment for Patients with Pain (SOAPP) and two variants, Revised and Short Form (n = 6); the Cut-down, Annoyed, Guilty, Eye-opener (CAGE) tool and one variant, Adapted to Include Drugs (n = 6); the Opioid Risk Tool (ORT) (n = 4); Prescription Monitoring Program (PMP) (n = 3); the Screen for Opioid-Associated Aberrant Behavior Risk (SOABR) (n = 1); and structured/specialist interviews (n = 1). Eight studies compared two or more approaches. The rates of risk of opioid misuse in the studied populations ranged from 6 to 65%, acknowledging that estimates are likely to have varied partly because of how specific to opioids the screening approaches were and whether a single or multi-step approach was used. UDT prompted by an intervention or observation of aberrant opioid behaviors (AOB) were conclusive of actual opioid misuse found to be 6.5-24%. Younger age, found in 8/10 studies; personal or family history of anxiety or other mental ill health, found in 6/8 studies; and history of illicit drug use, found in 4/6 studies, showed an increased risk of misuse. CONCLUSIONS: Younger age, personal or familial mental health history, and history of illicit drug use consistently showed an increased risk of opioid misuse. Clinical suspicion of opioid misuse may be raised by data from PMP or any of the standardized list of AOBs. Clinicians may use SOAPP-R, CAGE-AID, or ORT to screen for increased risk and may use UDT to confirm suspicion of opioid misuse or monitor adherence. More research into this important area is required. SIGNIFICANCE OF RESULTS: This systematic review summarized the literature on the use of opioid misuse risk approaches in people with cancer. The rates of reported risk range from 6 to 65%; however, true rate may be closer to 6.5-24%. Younger age, personal or familial mental health history, and history of illicit drug use consistently showed an increased risk of opioid misuse. Clinicians may choose from several approaches. Limited data are available on feasibility and patient experience. PROSPERO registration number. CRD42020163385.

Facilitated case conferences on end-of-life care for persons with advanced dementia-a qualitative study of interactions between long-term care clinicians and family members.

BACKGROUND: Prognostic uncertainty and the need for proxy decision-making owing to cognitive impairment in advanced dementia, adds complexity to end-of-life care planning within the long-term care setting. Case conferences provide a structure to facilitate difficult conversations and an opportunity for family and clinicians to engage in prospective planning, and reach agreement on goals of end-of-life care. OBJECTIVE: To explore interactions between multidisciplinary healthcare clinicians and families during facilitated case conferences on end-of-life care for residents with advanced dementia. METHODS: A qualitative approach was used. Transcripts of audio-recorded case conferences facilitated by a trained registered nurse were coded by two independent researchers and analysed inductively. Transcripts were selected from an available pool until thematic saturation was reached. Emerging themes were confirmed with the wider research group. RESULTS: Thematic saturation was reached after 25 transcripts. An overarching theme concerned the ways in which clinicians and families bridged medical and person-centred perspectives. Subthemes included: details of day-to-day care versus establishing overall goals of care; expression of emotion versus retreat from emotion; and missed opportunities versus expressed cues. Successful facilitation served to 'bridge the gap' between family and clinicians. CONCLUSION: Facilitation of case conferences for residents with advanced dementia should focus on ensuring that: clinicians do not miss opportunities to discuss end-of-life care; discussions on the minutiae of care regularly return to the resident's broader goals of care; and information on dementia and treatments provided by clinicians is integrated with advice by family members regarding the resident's premorbid values and likely preferences.

Palliative care needs and experiences of people in prison: A systematic review and meta-synthesis.

BACKGROUND: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. AIMS: To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. DESIGN: A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. DATA SOURCES: Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. FINDINGS: Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. CONCLUSIONS: People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.

Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study.

BACKGROUND: There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. AIM: To seek the perspectives of Australian patients with palliative care needs, and their family members, to elicit their views on how to best contribute to inpatient palliative care quality improvement initiatives. DESIGN: An exploratory qualitative study, using semi-structured interviews. SETTING/PARTICIPANTS: Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia; and snowballing. RESULTS: Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: (1) Mechanisms for providing feedback about care quality need to be supportive and individualised; (2) The clinician-patient/family power imbalance makes real time feedback challenging to provide; (3) Willingness to contribute varies according to diagnosis, timing and role and (4) Face to face feedback is preferred for health service improvement work. CONCLUSIONS: Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care.

Efficacy of medicinal cannabis for appetite-related symptoms in people with cancer: A systematic review.

BACKGROUND: Anorexia (loss of appetite) is a prevalent and distressing symptom in people with cancer, with limited effective interventions. Medicinal cannabis has shown promise in improving appetite-related symptoms in people with cancer. AIM: To assess the efficacy of medicinal cannabis for improving appetite-related symptoms in people with cancer, considering measures and outcomes, interventions and toxicity. DESIGN: Systematic review with narrative approach to synthesis and meta-analysis. DATA SOURCES: Databases (MEDLINE, CINAHL, CENTRAL), websites and trials registries were searched from inception to February 2021. Included studies were randomised controlled trials (RCT) in English peer-reviewed journals comparing medicinal cannabis with placebo and/or another intervention. Study quality was assessed using the Cochrane risk of bias tool. RESULTS: Five studies were included that compared medicinal cannabis interventions (dronabinol, nabilone and cannabis extract) either with placebo (n = 4) or megestrol acetate (n = 1). Measures and trial endpoints varied, but efficacy was demonstrated in one trial only, in which dronabinol significantly improved chemosensory perception and other secondary outcomes (taste of food, premeal appetite, proportion of calories consumed as protein) compared with placebo. Cannabis interventions were generally well tolerated across studies, regardless of the product or dose, although the comprehensive measurement of toxicities was limited. CONCLUSION: Evidence from RCTs that medicinal cannabis increases appetite in people with cancer is limited. Measures, outcomes and interventions were variable, and toxicities have not been comprehensively evaluated. Future research should carefully consider biological mechanisms to guide more nuanced selection of endpoints and interventions, including product, dose and administration.

Implementing the battery-operated hand-held fan as an evidence-based, non-pharmacological intervention for chronic breathlessness in patients with chronic obstructive pulmonary disease (COPD): a qualitative study of the views of specialist respiratory clinicians.

INTRODUCTION: The battery-operated hand-held fan ('fan') is an inexpensive and portable non-pharmacological intervention for chronic breathlessness. Evidence from randomised controlled trials suggests the fan reduces breathlessness intensity and improves physical activity in patients with a range of advanced chronic conditions. Qualitative data from these trials suggests the fan may also reduce anxiety and improve daily functioning for many patients. This study aimed to explore barriers and facilitators to the fan's implementation in specialist respiratory care as a non-pharmacological intervention for chronic breathlessness in patients with chronic obstructive pulmonary disease (COPD). METHODS: A qualitative approach was taken, using focus groups. Participants were clinicians from any discipline working in specialist respiratory care at two hospitals. Questions asked about current fan-related practice and perceptions regarding benefits, harms and mechanisms, and factors influencing its implementation. Analysis used a mixed inductive/deductive approach. RESULTS: Forty-nine participants from nursing (n = 30), medical (n = 13) and allied health (n = 6) disciplines participated across 9 focus groups. The most influential facilitator was a belief that the fan's benefits outweighed disadvantages. Clinicians' beliefs about the fan's mechanisms determined which patient sub-groups they targeted, for example anxious or palliative/end-stage patients. Barriers to implementation included a lack of clarity about whose role it was to implement the fan, what advice to provide patients, and limited access to fans in hospitals. Few clinicians implemented the fan for acute-on-chronic breathlessness or in combination with other interventions. CONCLUSION: Implementation of the fan in specialist respiratory care may require service- and clinician-level interventions to ensure it is routinely recommended as a first-line intervention for chronic breathlessness in patients for whom this symptom is of concern, regardless of COPD stage.

Improving care for cancer-related and other forms of lymphoedema in low- and middle-income countries: a qualitative study.

BACKGROUND: Lymphoedema is a common, distressing and debilitating condition that can be related to cancer and its treatment or other conditions. Little is known about current practices in the diagnosis, assessment and management of lymphoedema in low- and middle-income countries (LMIC). AIM: To describe current practices in diagnosing, assessing and managing cancer-related and other forms of lymphoedema in LMIC, and related barriers and facilitators. METHODS: An exploratory-descriptive qualitative study. Participants were lymphoedema experts or health care professionals identified via published lymphoedema papers and professional organizations respectively. Sampling was purposive to ensure a diversity of perspectives and experience. Data collection was via semi-structured telephone/video interviews, and questions canvassed participants' experiences and perceptions of lymphoedema care in LMIC. Interviews were audio-recorded and transcribed verbatim. Analysis proceeded via inductive coding before mapping codes to the World Health Organization's (WHO) Innovative Care for Chronic Conditions Framework. RESULTS: Nineteen participants were interviewed, most of whom were physiotherapists (n = 11). Ten participants worked permanently in a LMIC, while the remainder were based in a high-income country (HIC) and had been involved in initiatives to improve lymphoedema care across multiple LMIC. Participants indicated that management of cancer versus non-cancer related lymphoedema was similar, but that pathways to care were more straight-forward for those receiving cancer care, leading to earlier diagnosis. Key facilitators to optimizing lymphoedema care in LMIC included: 1) joining forces to overcome lymphoedema-related stigma; 2) building workforce capabilities; and 3) partnering with patients and families to support self-management. Ideas for building workforce included developing health professional knowledge, supporting a commitment to multidisciplinary team care, and adapting HIC guidelines for lymphoedema care to LMIC. Partnering with patients and families to support self-management involved following the person-centred approach, establishing clear communication, promoting adherence to management, adapting management to available resources, and involving patient family and friends in lymphoedema care. CONCLUSION: Raising community and health professional awareness regarding lymphoedema and its management is a key first step to improving care outcomes. Resources for clinicians and patients/families developed for lymphoedema care in HIC need to be adapted for low resource settings.

End-of-life dreams and visions: A systematic integrative review.

OBJECTIVES: End-of-life dreams and visions (ELDVs) have been reported throughout history. We aimed to synthesize the research literature on ELDVs to determine the proportions of patients, bereaved families, healthcare professionals, and volunteers reporting ELDVs; ELDV content, timing, and interpretation; and any evidence-based approaches to ELDV-related care. METHODS: A systematic review protocol was registered with PROSPERO (CRD4021282929). CINAHL, Medline, Embase, Emcare, and APA PsycInfo were searched for peer-reviewed English language articles reporting qualitative, quantitative, or mixed methods studies that explored reports of ELDVs by patients, bereaved families, healthcare professionals, or volunteers. Synthesis used both meta-analysis and a narrative approach. RESULTS: Of 2,045 papers identified by searches, 22 were included, describing 18 studies in a variety of settings. Meta-analyses indicated that 77% (95% confidence intervals [CIs] 69-84%) of patients (n = 119) reported an ELDV compared with 32% (95% CIs 21-44%) of bereaved relatives (n = 2,444) and that 80% (95% CIs 59-94%) of healthcare professionals (n = 171) reported either witnessing or being told of an ELDV in the preceding 5 years. Studies of volunteers reported 34% (95% CIs 20-48%) (n = 45) either witnessing or being told of an ELDV over their entire period of service, with 49% of volunteers (95% CIs 33-64%) (n = 39) reporting events occurring in the preceding year. ELDVs reported by patients, bereaved families, healthcare professionals, and volunteers were perceived as being a source of comfort. Healthcare professionals and volunteers expressed a need for further education on how to support patients experiencing ELDVs and their families. SIGNIFICANCE OF RESULTS: ELDVs are experienced by the majority of dying patients and need consideration in delivering holistic end-of-life care. Little if any research has been conducted in acute care facilities.