Case study discussion: The important partnership role of Disability Nurse Navigators in the context of abrupt system changes because of COVID-19 pandemic.

BACKGROUND: Rapidly implementing telehealth-facilitated healthcare services in a COVID-19 environment generates relational challenges for people with intellectual disability. Disability Nurse Navigators assume a critical intermediary role between the healthcare system and this population. AIM: To discuss the impact that rapid service change, in response to the COVID-19 pandemic, can have on people with disability and the work of Disability Nurse Navigators who support them. METHODS: This clinical case discussion comprises two parts. First, a discussion on the impact that COVID-19 pandemic management has had on one person with an intellectual disability is framed using intersecting notions of cumulative complexity and Burden of Treatment Theory. Following, through a Latourian lens, the role of the Disability Nurse Navigator is explored. FINDINGS: During COVID-19, telehealth has proved an important tool for healthcare continuity. Yet, for some people with some disabilities who live with additional and cumulative layers of health and social complexity, the healthcare workload that is transferred to them is exacerbated as they try to interact with disabling infrastructure. DISCUSSION: The Disability Nurse Navigator recognises that people with disability are not independent of the technologies and structures that make up the healthcare system but that they are mutually constitutive. The Disability Nurse Navigator thus works to stabilise the relationships between changed service provision and the healthcare workload and capacity of people with disability. CONCLUSION: The work of the Disability Nurse Navigator ultimately mitigated the disruption and additional treatment burden that is transferred to people with disability because of unintended consequences arising from the rapid introduction of service change.

Prevalence, severity and impacts of breathlessness in Indian adults: An exploratory, nationally representative, cross-sectional online survey.

There are no known estimates of the prevalence, severity and impacts from breathlessness in low- and middle-income countries. This study aimed to explore the prevalence, severity, self-attributed underlying conditions and impacts of breathlessness limiting exertion in community-dwelling adults in India. This exploratory, population-based online survey recruited a pre-planned sample of 3,000 adult respondents stratified by age, sex and rurality (quotas as per the 2011 Indian National Census). Measures included: demographics; breathlessness limiting exertion (modified Medical Research [mMRC] scale); health-related quality of life (EQ-5D-5L); and disability (World Health Organisation's Disability Assessment Schedule 2.0 12-item questionnaire [WHODAS-12]). Respondents (n = 3,046) had a mean age of 38 years (SD 15); 57% were male, 59% lived in rural areas and 33% had completed 12th grade. Breathlessness limiting exertion (mMRC ≥1) was reported by 44%, mostly attributed to poor nutrition (28%), lung conditions excluding tuberculosis (17%) or anaemia (13%). Compared to those without breathlessness, a higher proportion of people with breathlessness (mMRC ≥1) reported problems across all EQ-5D-5L dimensions. Most people reporting breathlessness (81%) indicated the symptom had adversely affected their normal activities. Disability scores (WHODAS-12 total and individual domains) increased as breathlessness worsened. To conclude, in India, conservative estimates indicate 626 million people live with breathlessness of whom 52 million people live with severe breathlessness. The symptom is associated with poorer health-related quality of life and marked disability, including reduced ability to perform daily activities.

Roles and practices of specialist lung cancer nurses: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to map the available literature on the role of specialist lung cancer nurses. INTRODUCTION: The international literature acknowledges the importance of specialist cancer nurses who provide supportive care to patients. Historically, however, there has been a lack of consistent evidence to inform development and implementation of the role. INCLUSION CRITERIA: This review will consider quantitative and qualitative studies of any design or methodology that report on role characteristics or behaviors, practices, or activities, or other aspects of specialist lung cancer nurses in the acute care setting. Systematic reviews, professional body reports, as well as unpublished or published studies and reports will also be considered for inclusion. Textual or opinion papers will be excluded. METHODS: This review will follow the JBI methodology for scoping reviews. Relevant papers from 2006 to 2022, in any language, will be searched for in the following databases and registries: MEDLINE (PubMed), CINAHL (EBSCO), Web of Science, Embase, and the Cochrane Register of Controlled Trials. Websites to be searched will include the World Health Organization, International Council of Nurses, and Agency for Healthcare Research and Quality. ProQuest Dissertations and Theses (ProQuest) and Grey Matters (CADTH) will be searched for unpublished literature. Results will be presented in tabular and narrative format and mapped according to the specified concepts of interest, as well as to the domains of practice for specialist nursing roles.

Understanding persistent breathlessness: impact on patients and optimal approaches to symptomatic reduction - an overview.

INTRODUCTION: Persistent breathlessness (breathlessness persisting despite optimal treatment for the underlying condition and resulting in disability) is a prevalent syndrome associated with chronic and life-limiting conditions. Improving the clinical recognition and assessment of persistent breathlessness is essential to ensure people are provided with the best treatment for optimal symptom control. AREAS COVERED: This overview focuses on the impact of persistent breathlessness on patients, carers and the health system. It highlights the importance of identifying persistent breathlessness in clinical consultations, suggests steps to recognize this syndrome and discusses the evidence for non-pharmacological and pharmacological treatments in this context. Future research directions are also suggested. EXPERT OPINION: Persistent breathlessness is often invisible because 1) people may not engage with the health system and 2) both clinicians and patients are reluctant to discuss breathlessness in clinical consultations. Improving the recognition and assessment of this syndrome is critical to facilitate meaningful conversations between patients and clinicians and ensure patient-centered care. Non-pharmacological strategies are key to improving symptom management and health outcomes. Regular, low-dose, sustained-release morphine may help further reduce breathlessness in people who remain symptomatic despite disease-specific and non-pharmacological therapies.

Advancing clinical facilitator capability to support graduate nurses: Outputs from social learning processes embedded in action research cycles.

AIM: This study in the first instance, seeks to identify encounters that commonly occur between graduates, facilitators and others; and second, to explicate skills and behaviours needed by facilitators to effectively guide graduates to perform at expected standards. BACKGROUND: In Australia, nursing graduates are expected to assimilate quickly and adapt to workplace practices within short timeframes. Clinical facilitators are provided to support transition to the workplace. However, providing support is only understood in broad terms. DESIGN: Two consecutive action research cycles informed by extended Vygotskian learning concepts guided the study. The first cycle recorded and categorised critical encounters with graduates which were subsequently subjected to a thematic analysis to identify common circumstances where clinical facilitators are required to provide support to graduates. The second cycle articulated behaviours useful to clinical faciltators to foster graduate nurse learning, for optimal management of challenges experienced in routine daily practice. METHOD: Registered nurses involved in graduate clinical facilitation at a large (780 bed adult facility) and a medium (448 bed adult, paediatric, maternity) acute hospital participated in the study. This graduate facilitation team through situated learning and a series of joint activity designed an EXCEL spreadsheet on which they recorded their observations and experiences with faciltating graduates transition to practice. RESULTS: From 1615 reported challenging interactions in the first cycle, saturation of emerging themes was reached with a random subset of 142. Six common areas of intensive needs for graduates were recorded, namely, resilience, technical support, emergent need, time management, advocate for graduate and catastrophe. The second cycle articulated processes for managing identified need areas in the form of flow charts. In practice, the flow charts provide a means for 'scaffolding' supervision and suggest conversations useful to facilitators to successfully support graduate nurses. CONCLUSION: This research has successfully explicated a largely 'undefined' area of nursing work, that is, making the invisible work of clinical facilitators 'visible' through the construction of flow charts. Specifically, advances have been made in articulating contextual, constructive support that nurses who facilitate the assimilation of graduates need to bring to interactions with graduates.

Development of an Australia and New Zealand Lung Cancer Clinical Quality Registry: a protocol paper.

INTRODUCTION: Lung cancer is the leading cause of cancer mortality, comprising the largest national cancer disease burden in Australia and New Zealand. Regional reports identify substantial evidence-practice gaps, unwarranted variation from best practice, and variation in processes and outcomes of care between treating centres. The Australia and New Zealand Lung Cancer Registry (ANZLCR) will be developed as a Clinical Quality Registry to monitor the safety, quality and effectiveness of lung cancer care in Australia and New Zealand. METHODS AND ANALYSIS: Patient participants will include all adults >18 years of age with a new diagnosis of non-small-cell lung cancer (NSCLC), SCLC, thymoma or mesothelioma. The ANZLCR will register confirmed diagnoses using opt-out consent. Data will address key patient, disease, management processes and outcomes reported as clinical quality indicators. Electronic data collection facilitated by local data collectors and local, state and federal data linkage will enhance completeness and accuracy. Data will be stored and maintained in a secure web-based data platform overseen by registry management. Central governance with binational representation from consumers, patients and carers, governance, administration, health department, health policy bodies, university research and healthcare workers will provide project oversight. ETHICS AND DISSEMINATION: The ANZLCR has received national ethics approval under the National Mutual Acceptance scheme. Data will be routinely reported to participating sites describing performance against measures of agreed best practice and nationally to stakeholders including federal, state and territory departments of health. Local, regional and (bi)national benchmarks, augmented with online dashboard indicator reporting will enable local targeting of quality improvement efforts.