Creating safer cancer care with ethnic minority patients: A qualitative analysis of the experiences of cancer service staff.

INTRODUCTION: Effective consumer engagement practices can enhance patient safety. This is important for consumers from ethnic minority backgrounds who are exposed to increased risk of patient safety events. Using the Systems Engineering Initiative for Patient Safety model, this study explored staff experiences of creating opportunities for engagement with consumers from ethnic minority backgrounds to contribute to their cancer care safety. METHOD: A qualitative study was conducted using semistructured interviews with cancer service staff from four cancer services across two states in Australia. Purposive sampling was used to recruit healthcare staff from a diverse range of professions. Data were analysed using the Framework Analysis method. RESULTS: Fifty-four interviews were conducted with healthcare staff. Analysis of the qualitative interview data identified enablers and associated challenges that contributed to creating a shared understanding between consumers and staff of the information, processes, expectations and problems arising in care. Enablers and challenges are reported in relation to four themes: (1) co-creating safety through shared understanding of care processes; (2) tools and technologies support planned communication; (3) organisational policy levers exist but lack implementation in direct care and (4) formal tasks incorporate consumer engagement more readily than informal interactions. CONCLUSION: The availability of infrastructure and resources to support communication with consumers from ethnic minority backgrounds was limited to specific tasks across the cancer care continuum. Strategies implemented by health services to foster effective communication during formal interactions now require expansion to support and create conditions for effective consumer engagement during informal and everyday care tasks. The use of innovative language support tools and cultural considerations are required at the service and system level to support consumer engagement in all types of care interactions. PUBLIC AND PATIENT INVOLVEMENT: The study was embedded within a larger project that included a consumer investigator and was guided by a consumer advisory group (CAG). These consumer team members have lived experience of cancer and are from diverse ethnic backgrounds. CAG members provided feedback on the draft interview guide and participant information for this study.

Engaging With Health Consumers in Scientific Conferences-As Partners not Bystanders.

INTRODUCTION: It is now widely recognised that engaging consumers in research activities can enhance the quality, equity and relevance of the research. Much of the commentary about consumer engagement in research focuses on research processes and implementation, rather than dissemination in conference settings. This article offers reflections and learnings from consumers, researchers and conference organisers on the 12th Health Services Research Conference, a biennial conference hosted by the Health Services Research Association of Australia and New Zealand (HSRAANZ). METHOD: We were awarded funds via a competitive application process by Bellberry Limited, a national not-for-profit agency with a focus on improving research quality, to incorporate consumer engagement strategies in conference processes and evaluate their impact. FINDINGS: Strategies included consumer scholarships, a buddy system, designated quiet space and consumer session co-chairs; the reflections explored in this paper were collected in the funded, independent evaluation. Our insights suggest a need for more structured consumer involvement in conference planning and design, as well as the development of specific engagement strategies. CONCLUSION: To move toward active partnership in scientific conference settings, our experience reinforces the need to engage consumers as members in designing and conducting research and in presenting research and planning conference content and processes. PUBLIC CONTRIBUTION: Consumer engagement in research dissemination at conferences is the focus of this viewpoint article. Consumers were involved in the conception of this article and have contributed to authorship at all stages of revisions and edits.

Measuring Healthcare Experiences Among People With Intellectual Disability: A Rapid Evidence Synthesis of Tools And Methods.

OBJECTIVES: Patient-reported experience measures (PREMs) collect essential data for service and system-wide quality improvement and performance monitoring toward value-based care. However, the experiences of people with intellectual disability, who have high healthcare utilization couple with poorer outcomes, are often omitted from system-wide PREMs and service-wide PREMs data. The use of PREMs instruments for data collection among people with intellectual disability has not been explored. This review aimed to identify and synthesize measurement tools and approaches that have been used to gather patient-reported experience data from people with intellectual disability. METHODS: Rapid evidence assessment was used, in which comprehensive search strategies were applied to electronic databases and gray literature. Narrative synthesis was used with the included articles to address the review aim. RESULTS: A total of 48 documents were included; 26 peer-reviewed journal articles and 22 articles from gray literature. Patient-reported experiences have been gathered from people with intellectual disabilities in relation to specific services or encounters, predominantly using qualitative methods. To date, there is an absence of targeted service- or system-wide surveys. Existing clinic- and condition-specific instruments provide insight for broader application. CONCLUSIONS: Patient experience assessment among people with intellectual disability requires consideration of (1) how individuals are identified and approached, (2) the content, design and structure of measurement instruments, and (3) the process by which data are collected, and (4) how it may be applied to create change. Despite the collection of patient experience data from people with intellectual disability, there is little research available about how this information is later used to support health service improvement. Applying PREMs for quality improvement is critical to realize the improvements to healthcare provision required for people with intellectual disability toward equitable care quality.

Co-designing strategies to improve advance care planning among people from culturally and linguistically diverse backgrounds with cancer: iCanCarePlan study protocol.

BACKGROUND: Advance care planning (ACP) describes the process of supporting individuals at any age or stage of health to consider and share their personal values, life goals, and preferences regarding future health care. Engaging in ACP is associated with better-quality of care in which people receive care in lines with their wishes, values and preferences. Direct translations of ACP guides and resources do not attend to the considerable inter- and intra-ethnic variations in cultural and religious or spiritual beliefs that shape preferences among people from culturally and linguistically diverse (CALD) backgrounds. ICanCarePlan is a three-year project that aims to determine the prevalence of ACP documentation among people from CALD backgrounds with cancer, identify resources available and their use to support ACP among CALD communities, identify barriers and facilitators of person-centred ACP, and to develop, through co-design with consumers and clinicians, approaches that enhance the process ACP for people from CALD backgrounds. METHOD: A mixed-method sequential approach will be used comprising of four studies. Study one is retrospective medical record review of approximately 1500 medical records to establish the prevalence of ACP documentation among CALD patient records in cancer services. Study two is a document analysis synthesising the resources available in the Australian health system to support ACP. Study three is a qualitative study with healthcare staff and consumers to explore barriers and enablers of person-centred ACP. Evidence generated from studies one to three will inform the conduct of co-design with stakeholders to develop approaches to improve ACP processes among CALD communities. Language, technical and financial support for meaningful involvement with consumers from CALD backgrounds throughout this project is outlined. A plan for distress management is also made due to sensitive nature of the topic. The research project has also established a project steering group consisting of three consumer members who are from CALD backgrounds. DISCUSSION: The project will address a national priority issue for a growing population of CALD communities in Australia. The project will provide novel evidence of ACP among CALD communities and novel strategies developed with stakeholders to enhance uptake and experiences of ACP.

The silent threat: investigating sleep disturbances in hospitalized patients.

Sleep disruptions in the hospital setting can have adverse effects on patient safety and well-being, leading to complications like delirium and prolonged recovery. This study aimed to comprehensively assess the factors influencing sleep disturbances in hospital wards, with a comparison of the sleep quality of patients staying in single rooms to those in shared rooms. A mixed-methods approach was used to examine patient-reported sleep quality and sleep disruption factors, in conjunction with objective noise measurements, across seven inpatient wards at an acute tertiary public hospital in Sydney, Australia. The most disruptive factor to sleep in the hospital was noise, ranked as 'very disruptive' by 20% of patients, followed by acute health conditions (11%) and nursing interventions (10%). Patients in shared rooms experienced the most disturbed sleep, with 51% reporting 'poor' or 'very poor' sleep quality. In contrast, only 17% of the patients in single rooms reported the same. Notably, sound levels in shared rooms surpassed 100 dB, highlighting the potential for significant sleep disturbances in shared patient accommodation settings. The results of this study provide a comprehensive overview of the sleep-related challenges faced by patients in hospital, particularly those staying in shared rooms. The insights from this study offer guidance for targeted healthcare improvements to minimize disruptions and enhance the quality of sleep for hospitalized patients.

Measuring clinician experience in value-based healthcare initiatives: a 10-item core clinician experience measure (CEM-10).

Objective Clinician's experiences of providing care are identified as a key outcome associated with value-based healthcare (VBHC). In contrast to patient-reported experience measures, measurement tools to capture clinician's experiences in relation to VBHC initiatives have received limited attention to date. Progressing from an initial 18-item clinician experience measure (CEM), we sought to develop and evaluate the reliability of a set of 10 core clinician experience measure items in the CEM-10. Methods A multi-method project was conducted using a consensus workshop with clinicians from a range of NSW Health local health districts to reduce the 18-item CEM to a short form 10-item core clinician experience measure (CEM-10). The CEM-10 was deployed with clinicians providing diabetes care, care for older adults and virtual care across all districts and care settings of New South Wales, Australia. Psychometric analysis was used to determine the internal consistency of the tool and its suitability for diverse clinical contexts. Results Consensus building sessions led to a rationalised 10-item tool, retaining the four domains of psychological safety (two items), quality of care (three items), clinician engagement (three items) and interprofessional collaboration (two items). Data from four clinician cohorts (n = 1029) demonstrated that the CEM-10 four-factor model produced a good fit to the data and high levels of reliability, with factor loadings ranging from 0.77 to 0.92, with Cronbach's alpha (range: 0.79-0.90) and composite reliability (range: 0.80-0.92). Conclusions The CEM-10 provides a core set of common clinician experience measurement items that can be used to compare clinician's experiences of providing care between and within cohorts. The CEM-10 may be supported by additional items relevant to particular initiatives when evaluating VBHC outcomes.

Marked variations in medical provider and out-of-pocket costs for radical prostatectomy procedures in Australia.

Objectives Unwarranted clinical variations in radical prostatectomy (RP) procedures are frequently reported, yet less attention is given to the variations in associated costs. This issue can further widen disparities in access to care and provoke questions about the overall value of the procedure. The present paper aimed to delve into the disparities in hospital, medical provider and out-of-pocket costs for RP procedures in Australia, discussing plausible causes and potential policy opportunities. Methods A retrospective cohort study using Medibank Private claims data for RP procedures conducted in Australian hospitals between 1 January 2015 and 31 December 2020 was undertaken. Results Considerable variations in both medical provider and out-of-pocket costs were observed across the country, with variations evident between different states or territories. Particularly striking were the discrepancies in the costs charged by medical providers, with a notable contrast between the 10th and 90th percentiles revealing a substantial difference of A$9925. Hospitals in Australia exhibited relatively comparable charges for RP procedures. Conclusions Initiatives such as enhancing transparency regarding individual medical provider costs and implementing fee regulations with healthcare providers may be useful in curbing the variations in RP procedure costs.

Approaches for enhancing patient-reported experience measurement with ethnically diverse communities: a rapid evidence synthesis.

BACKGROUND: Patient-reported experience measures (PREMs) are used to drive and evaluate unit and organisational-level healthcare improvement, but also at a population level, these measures can be key indicators of healthcare quality. Current evidence indicates that ethnically diverse communities frequently experience poorer care quality and outcomes, with PREMs data required from this population to direct service improvement efforts. This review synthesises evidence of the methods and approaches used to promote participation in PREMs among ethnically diverse populations. METHODS: A rapid evidence appraisal (REA) methodology was utilised to identify the disparate literature on this topic. A search strategy was developed and applied to three major electronic databases in July 2022 (Medline; PsycINFO and CINAHL), in addition to websites of health agencies in Organisation for Economic Co-operation and Development countries via grey literature searches. A narrative evidence synthesis was undertaken to address the review question. RESULTS: The review resulted in 97 included studies, comprised 86 articles from electronic database searches and 11 articles from the grey literature. Data extraction and synthesis identified five strategies used in PREM instruments and processes to enhance participation among ethnically diverse communities. Strategies applied sought to better inform communities about PREMs, to create accessible PREMs instruments, to support PREMs completion and to include culturally relevant topics. Several methods were used, predominantly drawing upon bicultural workers, translation, and community outreach to access and support communities at one or more stages of design or administration of PREMs. Limited evidence was available of the effectiveness of the identified methods and strategies. PREMs topics of trust, cultural responsiveness, care navigation and coordination were identified as pertinent to and frequently explored with this population. CONCLUSIONS: The findings provide a basis for a maturity model that may guide change to increase participation of ethnically diverse communities in PREMs. In the short-medium term, health systems and services must be able to recognise and respond to cultural and linguistic diversity in the population when applying existing PREMs. In the longer-term, by working in collaboration with ethnically diverse communities, systems and services may co-create adapted or novel PREMs that tackle the factors that currently inhibit uptake and completion among ethnically diverse communities.

Potentially burdensome care at the end-of-life for cancer decedents: a retrospective population-wide study.

BACKGROUND: Variation persists in the quality of end-of-life-care (EOLC) for people with cancer. This study aims to describe the characteristics of, and 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. METHOD: A population-based retrospective cohort study of people aged ≥ 20 years who died 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, consisting of > 1 ED presentation or > 1 hospital admission or ≥ 1 ICU admission within 30 days of death, or died in acute care. RESULTS: Of the 80,005 cancer-related deaths, 86.9% were hospitalised in the 12 months prior to death. Fifteen percent had > 1 ED presentation, 9.9% had > 1 hospital admission, 8.6% spent ≥ 14 days in hospital, 3.6% had ≥ 1 intensive care unit admission, and 1.2% received mechanical ventilation on ≥ 1 occasion in the last 30 days of life. Seventeen percent died in acute care. The potentially burdensome care composite measure identified 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. Compared to people with head and neck cancer, people with all cancer types (except breast and neurological) were more likely to experience ≥ 2 indicators of potentially burdensome care versus none. CONCLUSION: This 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.

Strategies to Improve Care in the Emergency Department for Culturally and Linguistically Diverse Adults: a Systematic Review.

BACKGROUND: The emergency department (ED) is an important gateway into the health system for people from culturally and linguistically diverse (CALD) backgrounds; their experience in the ED is likely to impact the way they access care in the future. Our review aimed to describe interventions used to improve ED health care delivery for adults from a CALD background. METHODS: An electronic search of four databases was conducted to identify empirical studies that reported interventions with a primary focus of improving ED care for CALD adults (aged ≥ 18 years), with measures relating to ED system performance, patient outcomes, patient experience, or staff experience. Studies published from inception to November 2022 were included. We excluded non-empirical studies, studies where an intervention was not provided in ED, papers where the full text was unavailable, or papers published in a language other than English. The intervention strategies were categorised thematically, and measures were tabulated. RESULTS: Following the screening of 3654 abstracts, 89 articles underwent full text review; 16 articles met the inclusion criteria. Four clear strategies for targeting action tailored to the CALD population of interest were identified: improving self-management of health issues, improving communication between patients and providers, adhering to good clinical practice, and building health workforce capacity. CONCLUSIONS: The four strategies identified provide a useful framework for targeted action tailored to the population and outcome of interest. These detailed examples show how intervention design must consider intersecting socio-economic barriers, so as not to perpetuate existing disparity. REGISTRATION: PROSPERO registration number: CRD42022379584.