"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.

Identifying provider, patient and practice factors that shape long-term opioid prescribing for cancer pain: a qualitative study of American and Australian providers.

INTRODUCTION: Prescribing long-term opioid therapy is a nuanced clinical decision requiring careful consideration of risks versus benefits. Our goal is to understand patient, provider and context factors that impact the decision to prescribe opioids in patients with cancer. METHODS: We conducted a secondary analysis of the raw semistructured interview data gathered from 42 prescribers who participated in one of two aligned concurrent qualitative studies in the USA and Australia. We conducted a two-part analysis of the interview: first identifying all factors influencing long-term prescribing and second open coding-related content for themes. RESULTS: Factors that influence long-term opioid prescribing for cancer-related pain clustered under three key domains (patient-related, provider-related and practice-related factors) each with several themes. Domain 1: Patient factors related to provider-patient continuity, patient personality, the patient's social context and patient characteristics including racial/ethnic identity, housing and socioeconomic status. Domain 2: Provider-related factors centred around provider 'personal experience and expertise', training and time availability. Domain 3: Practice-related factors included healthcare interventions to promote safer opioid practices and accessibility of quality alternative pain therapies. CONCLUSION: Despite the differences in the contexts of the two countries, providers consider similar patient, provider and practice-related factors when long-term prescribing opioids for patients with cancer. Some of these factors may be categorised as cognitive biases that may intersect in an already disadvantaged patient and exacerbate disparities in the treatment of their pain. A more systematic understanding of these factors and how they impact the quality of care can inform appropriate interventions.

What matters most to people with metastatic uveal melanoma? A qualitative study to inform future measurement of health-related quality of life.

Metastatic uveal melanoma (mUM) is a rare cancer with poor prognosis, but novel treatments are emerging. Currently, there are no mUM-specific health-related quality of life (HRQL) questionnaires available for clinical research. We aimed to explore how mUM and its treatment affect HRQL and assess the content validity of existing questionnaires. Participants were patients with mUM and healthcare professionals involved in their care. Qualitative data were collected using semi-structured interviews and focus groups. Data collection and analysis used an integrative approach involving inductive questions/coding to elicit new concepts and deductive questions/coding based on domains of existing HRQL questionnaires. Initial interviews/focus groups focussed on HRQL questionnaires designed for patients with uveal melanoma or liver metastases. As new concepts were elicited, domains and items from other questionnaires were subsequently added. Seventeen patients and 16 clinicians participated. HRQL concerns assessed by uveal melanoma-specific questionnaires were largely resolved by the time of metastasis. The Functional Assessment of Cancer Therapy - Immunotherapy Module (FACT-ICM) adequately captured most immunotherapy-related side effects during initial treatment cycles. However, most patients emphasised emotional impacts over physical ones, focussing on the existential threat posed by disease amidst uncertainty about treatment accessibility and effectiveness. Patients were also concerned with treatment burden, including time commitment, travel, need for hospitalisation, and expenses. The relative importance of HRQL issues varied over time and across treatment modalities, with no single questionnaire being sufficient. Pending further development and psychometric testing, clinical researchers may need to take a modular approach to measuring the HRQL impacts of mUM.

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.

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.

The COVID-19 Pandemic: Bereavement Experiences Between Hospital and Home Deaths in Palliative Care.

BACKGROUND: Australian COVID-19 public health measures reduced opportunities for people to communicate with healthcare professionals and be present at the death of family members/friends. AIM: To understand if pandemic-specific challenges and public health measures during the COVID-19 pandemic impacted end-of-life and bereavement experiences differently if the death, supported by palliative care, occurred in a hospital or at home. DESIGN: A cross-sectional online survey was completed by bereaved adults during 2020-2022. Analyses compared home and in-patient palliative care deaths and bereavement outcomes. Additional analyses compared health communication outcomes for those identified as persons responsible or next of kin. SETTING/PARTICIPANTS: Of 744 bereaved people; 69% (n = 514) had a death in hospital and 31% (n = 220) at home. RESULTS: The COVID-19 public health measures influenced people's decision to die at home. Compared to hospital deaths, the home death group had higher levels of grief severity and grief-related functional impairment. Only 37% of bereaved people received information about bereavement and support services. 38% of participants who were at least 12 months postdeath scored at a level suggestive of possible prolonged grief disorder. Levels of depression and anxiety between the two groups were not significantly different. CONCLUSIONS: These findings highlight the need for health services to recognize bereavement as fundamental to palliative and health care and provide pre- and post death grief and bereavement care to ensure supports are available particularly for those managing end-of-life at home, and that such supports are in place prior to as well as at the time of the death.

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.

Mobile-Based Application Interventions to Enhance Cancer Control and Care in Low- and Middle-Income Countries: A Systematic Review.

Objective: To identify and appraise mobile-based application (mAPP) interventions that have been used to support cancer control and care in low- and middle-income countries (LMICs). Methods: Four electronic databases were systematically searched for studies that reported primary research findings related to mAPP interventions applied in oncology settings in LMICs. A narrative synthesis was performed using the Mhealth Index and Navigation Database as an analytical framework. Results: Twenty studies reporting 18 cancer control and care mAPPs were included in this review. Among these mAPPs, ten focused on prevention, screening and early detection of cancer, five provided information to optimise supportive and palliative care, two provided support to assist treatment-shared decision-making and one covered information for follow-up and survivorship care. Conclusion: Cancer mAPP interventions are gradually gaining attention in LMICs as they provide unique resources for empowering and strengthening the role of people with cancer in their own care. To enhance cancer control, a focus on prevention and early detection is important; however, more mAPP interventions related to cancer treatment, follow-up and survivorship are also needed to enable more cost-effective cancer care.

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.

The handheld fan for chronic breathlessness: Clinicians' experiences and views of implementation in clinical practice.

INTRODUCTION: The handheld fan ('fan') is useful for chronic breathlessness management, however little is known about clinicians' implementation of the fan in clinical practice. AIM: To explore clinicians' experiences and views of fan implementation. METHODS: A qualitative approach, using semi-structured interviews. Participants were purposively sampled from clinicians who had completed an on-line fan implementation survey and were willing to participate. A topic guide was developed using the Theoretical Domains Framework (TDF). Data were analysed using an inductive approach informed by the TDF. FINDINGS: Twelve clinicians participated (doctors n = 4; nurses n = 4; allied health professionals n = 4) from respiratory and palliative care. Analysis generated three major themes: i) Clinician knowledge and skills in fan implementation, ii) environmental constraints on fan use and iii) clinician beliefs about the consequences of fan use. Implementation by clinicians was positively influenced by having a scientific rationale for fan use presented (mechanism of action). Clinicians believed that the fan relieved breathlessness and did not carry a significant infection risk. Opportunity for fan use varied across healthcare settings; key environmental influences were COVID-19 restrictions, lack of access to resources and funding to provide fans, particularly in acute and respiratory services. Clinicians commonly encountered scepticism among patients and colleagues who felt the fan was an implausible intervention for breathlessness. CONCLUSION: Implementation of the fan is motivated by clinician beliefs about patient-benefit, a scientific rationale to counter clinician and patient scepticism, and access to fans in clinic. Funding to allow patients to be supplied with and taught how to use a fan would support uptake. Research is needed to address concerns about infection risk.

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.

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.

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.

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.

Treatment patterns and out-of-hospital healthcare resource utilisation by patients with advanced cancer living with pain: An analysis from the Stop Cancer PAIN trial.

BACKGROUND: About 70% of patients with advanced cancer experience pain. Few studies have investigated the use of healthcare in this population and the relationship between pain intensity and costs. METHODS: Adults with advanced cancer and scored worst pain ≥ 2/10 on a numeric rating scale (NRS) were recruited from 6 Australian oncology/palliative care outpatient services to the Stop Cancer PAIN trial (08/15-06/19). Out-of-hospital, publicly funded services, prescriptions and costs were estimated for the three months before pain screening. Descriptive statistics summarize the clinico-demographic variables, health services and costs, treatments and pain scores. Relationships with costs were explored using Spearman correlations, Mann-Whitney U and Kruskal-Wallis tests, and a gamma log-link generalized linear model. RESULTS: Overall, 212 participants had median worst pain scores of five (inter-quartile range 4). The most frequently prescribed medications were opioids (60.1%) and peptic ulcer/gastro-oesophageal reflux disease (GORD) drugs (51.6%). The total average healthcare cost in the three months before the census date was A$6,742 (95% CI $5,637, $7,847), approximately $27,000 annually. Men had higher mean healthcare costs than women, adjusting for age, cancer type and pain levels (men $7,872, women $4,493, p<0.01) and higher expenditure on prescriptions (men $5,559, women $2,034, p<0.01). CONCLUSIONS: In this population with pain and cancer, there was no clear relationship between healthcare costs and pain severity. These treatment patterns requiring further exploration including the prevalence of peptic ulcer/GORD drugs, and lipid lowering agents and the higher healthcare costs for men. TRIAL REGISTRATION: ACTRN12615000064505. World Health Organisation unique trial number U1111-1164-4649. Registered 23 January 2015.

Guidelines Relevant to Diagnosis, Assessment, and Management of Lymphedema: A Systematic Review.

Significance: Lymphedema is a common, distressing and debilitating condition with various etiologies. Effective diagnosis, assessment, and management rely on evidence-based clinical practice guidelines ("guidelines"). This study aims to describe and compare international guidelines on lymphedema diagnosis, assessment, and management. Recent Advances: The review was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, and registered on the International Prospective Register of Systematic Reviews (PROSPERO). Systematic searches of electronic literature databases and the web were completed in December 2020 for lymphedema guidelines published in English since 2000. Quality was assessed using the Appraisal of Guidelines for Research and Evaluation (AGREE)-II reporting checklist. Synthesis took a narrative approach to compare guideline recommendations and associated levels of evidence. Critical Issues: This systematic review of 1,564 articles and 159 web pages yielded 14 guidelines. All guidelines were from high-income countries. Ten focused exclusively on lymphedema, and four on cancer. Most (n = 13) guidelines recommended an integrated medical, psychological assessment, and physical examination, with a limb volume measurement of >10% in the affected limb compared, confirming a lymphedema diagnosis. Recommended management involved Complex Decongestive Therapy (CDT) followed by self-management using skincare, self-lymphatic drainage massage, exercise, and compression. Future Directions: The underlying etiology of lymphedema appeared to make little difference to guideline recommendations regarding care. High-quality guidelines are available to guide lymphedema care. However, their suitability for low-resource settings is unclear.

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.

Factors associated with being an older rather than younger unpaid carer of adults with a chronic health condition: Results from a population-based cross-sectional survey in South Australia.

OBJECTIVE: To examine sociodemographic characteristics and caring experiences associated with being an older rather than younger carer of an adult with a chronic health condition. METHODS: The population-based cross-sectional South Australian Health Omnibus survey was administered in 2016. Multiple logistic regression was used to identify sociodemographic characteristics and caring experiences associated with being an older (≥65 years) versus younger (<65 years) carer of one or more adult(s) with a chronic health condition. RESULTS: Of 988 survey respondents who self-identified as carers, 198(20%) were 65 years or over. Characteristics associated with being an older carer included having a partner, having poor physical health, being born outside Australia, have no formal qualification, living in a household of 1-2 people, have an annual household income ≤$60,000, and owning one's home. Carer experiences associated with older carer status included providing ≥40 h of care per week, perceived control over caring, and caring for someone with a neurological condition, whereas caring for someone with a mental illness, reporting poor mental health of their own, and providing personal care were inversely associated. DISCUSSION: Interventions directed at older carers should consider the increased likelihood that they may be investing large amounts of time in caring for someone with a neurological condition, and be culturally and linguistically diverse.

Non-medical devices for chronic breathlessness: use, barriers and facilitators for patients, carers and clinicians - a scoping review.

BACKGROUND: Non-medical devices such as the handheld fan (fan), mobility aids (wheeled walkers with seats) and inspiratory muscle training (IMT) devices offer benefits for patient management of chronic breathlessness. We examined the published evidence regarding patient, carer and clinician use of the fan, mobility aids and IMT devices for chronic breathlessness management, and the potential barriers and facilitators to day-to-day use in a range of settings. METHODS: MEDLINE, Embase, Scopus, EBSCO and the Cochrane Database of Systematic Reviews were searched. Papers were imported into EndNote and Rayyan for review against a priori eligibility criteria. Outcome data relevant to use were extracted and categorised as potential barriers and facilitators, and a narrative synthesis exploring reasons for similarities and differences conducted. RESULTS: Seven studies met the inclusion criteria (n=5 fan, n=2 mobility aids and n=0 IMT devices). All of the studies presented patient use of non-medical devices only. Patients found the fan easy to use at home. Mobility aids were used mainly for outdoor activities. Outdoor use for both devices were associated with embarrassment. Key barriers included: appearance; credibility; self-stigma; technical specifications. Common facilitators were ease of use, clinical benefit and feeling safe with the device. CONCLUSION: The efforts of patients, carers and clinicians to adopt and use non-medical devices for the management of chronic breathlessness is impeded by lack of implementation research. Future research should improve knowledge of the barriers and facilitators to use. This would enhance understanding of how decision-making in patient-carer-clinician triads impacts on non-medical devices use for breathlessness management.

Knowledge and Attitudes of Allied Health Professionals Towards End-Of-Life and Advance Care Planning Discussions With People With COPD: A Cross-Sectional Survey Study.

Chronic obstructive pulmonary disease (COPD) is a progressive, life-limiting condition. End-of-life (EOL) and Advance Care Planning (ACP) discussions are essential, yet access and support remain inadequate. Allied health professionals (AHPs) commonly have ongoing relationships with patients and opportunities to discuss care outside acute crises as is considered best practice. Australian and New Zealand AHPs were invited to complete an anonymous, online, cross-sectional survey that aimed to explore knowledge, attitudes and practices, and associated perceived triggers and barriers to EOL and ACP discussions with patients with COPD. Closed survey responses were summarized descriptively and free-text thematically analysed. One hundred and one AHPs (physiotherapists, social workers and occupational therapists) participated. Many held positive attitudes towards ACP but lacked procedural knowledge. Half (50%) of participants routinely discussed EOL care with patients when perceiving this to be appropriate but only 21% actually discussed ACP with the majority of their patients. Many cited lack of training to engage in sensitive EOL discussions, with barriers including: 1) clinician lack of confidence/fear of distressing patients (75%); 2) perceived patient and family reluctance (51%); 3) organizational challenges (28%); and 4) lack of role clarity (39%). AHPs commonly have ongoing relationships with patients with chronic conditions but lack the confidence and role clarity to utilise this position to engage ongoing EOL and ACP discussions. While AHPs may not traditionally consider EOL and ACP discussions as part of their role, it is crucial that they feel prepared to respond if patients broach the topic.