Breathlessness assessment, management and impact in the intensive care unit: a rapid review and narrative synthesis.

BACKGROUND: Adults in the intensive care unit (ICU) commonly experience distressing symptoms and other concerns such as pain, delirium, and breathlessness. Breathlessness management is not supported by any ICU guidelines, unlike other symptoms. AIM: To review the literature relating to (i) prevalence, intensity, assessment, and management of breathlessness in critically ill adults in the ICU receiving invasive and non-invasive mechanical ventilation (NIV) and high-flow oxygen therapy, (HFOT), (ii) the impact of breathlessness on ICU patients with regard to engagement with rehabilitation. METHODS: A rapid review and narrative synthesis using the Cochrane Methods Group Recommendations was conducted and reported in accordance with PRISMA. All study designs investigating breathlessness in adult ICU patients receiving either invasive mechanical ventilation (IMV), NIV or HFOT were eligible. PubMed, MEDLINE, The Cochrane Library and CINAHL databased were searched from June 2013 to June 2023. Studies were quality appraised. RESULTS: 19 studies representing 2822 ICU patients were included (participants mean age 48 years to 71 years; proportion of males 43-100%). The weighted mean prevalence of breathlessness in ICU patients receiving IMV was 49% (range 34-66%). The proportion of patients receiving NIV self-reporting moderate to severe dyspnoea was 55% prior to initiation. Breathlessness assessment tools included visual analogue scale, (VAS), numerical rating scale, (NRS) and modified BORG scale, (mBORG). In patients receiving NIV the highest reported median (interquartile range [IQR]) VAS, NRS and mBORG scores were 6.2cm (0-10 cm), 5 (2-7) and 6 (2.3-7) respectively (moderate to severe breathlessness). In patients receiving either NIV or HFOT the highest reported median (IQR) VAS, NRS and mBORG scores were 3 cm (0-6 cm), 8 (5-10) and 4 (3-5) respectively. CONCLUSION: Breathlessness in adults receiving IMV, NIV or HFOT in the ICU is prevalent and clinically important with median intensity ratings indicating the presence of moderate to severe symptoms.

The cost of providing care by family and friends (informal care) in the last year of life: A population observational study.

INTRODUCTION: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. AIM: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. DESIGN: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. SETTING/PARTICIPANTS: Adult national survey respondents - England. RESULTS: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only. CONCLUSION: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.

Using an AI-based avatar for interviewer training at Children's Advocacy Centers: Proof of Concept.

This proof-of- concept study focused on interviewers' behaviors and perceptions when interacting with a dynamic AI child avatar alleging abuse. Professionals (N = 68) took part in a virtual reality (VR) study in which they questioned an avatar presented as a child victim of sexual or physical abuse. Of interest was how interviewers questioned the avatar, how productive the child avatar was in response, and how interviewers perceived the VR interaction. Findings suggested alignment between interviewers' virtual questioning approaches and interviewers' typical questioning behavior in real-world investigative interviews, with a diverse range of questions used to elicit disclosures from the child avatar. The avatar responded to most question types as children typically do, though more nuanced programming of the avatar's productivity in response to complex question types is needed. Participants rated the avatar positively and felt comfortable with the VR experience. Results underscored the potential of AI-based interview training as a scalable, standardized alternative to traditional methods.

Malnutrition, sarcopenia and cachexia: exploring prevalence, overlap, and perceptions in older adults with cancer.

BACKGROUND: Older adults with cancer are a growing population requiring tailored care to achieve optimum treatment outcomes. Their care is complicated by under-recognised and under-treated wasting disorders: malnutrition, sarcopenia, and cachexia. We aimed to investigate the prevalence, overlap, and patients' views and experiences of malnutrition, sarcopenia, and cachexia, in older adults with cancer. METHODS: Mixed-methods study with cross-sectional study and qualitative interviews. Interviews were thematically analysed through a phenomenological lens, with feedback loop analysis investigating relationships between themes and findings synthesised using modified critical interpretative synthesis. FINDINGS: n = 30 were screened for malnutrition, sarcopenia, and cachexia, n = 8 completed semi-structured interviews. Eighteen (60.0%) were malnourished, 16 (53.3%) sarcopenic, and 17 (56.7%) cachexic. One or more condition was seen in 80%, and all three in 30%. In univariate analysis, Rockwood clinical frailty score (OR 2.94 [95% CI: 1.26-6.89, p = 0.013]) was associated with sarcopenia, reported percentage meal consumption (OR 2.28 [95% CI: 1.24-4.19, p = 0.008]), and visible wasting (OR 8.43 [95% CI: 1.9-37.3] p = 0.005) with malnutrition, and percentage monthly weight loss (OR 8.71 [95% CI: 1.87-40.60] p = 0.006) with cachexia. Screening tools identified established conditions rather than 'risk'. Nutritional and functional problems were often overlooked, overshadowed, and misunderstood by both patients and (in patients' perceptions) by clinicians; misattributed to ageing, cancer, or comorbidities. Patients viewed these conditions as both personal impossibilities, yet accepted inevitabilities. CONCLUSION: Perceptions, identification, and management of these conditions needs to improve, and their importance recognised by clinicians and patients so those truly 'at risk' are identified whilst conditions are more remediable to interventions.

Improving the Detection, Assessment, Management and Prevention of Delirium in Hospices (the DAMPen-D study): Feasibility study of a flexible and scalable implementation strategy to deliver guideline-adherent delirium care.

BACKGROUND: Delirium is a complex condition, stressful for all involved. Although highly prevalent in palliative care settings, it remains underdiagnosed and associated with poor outcomes. Guideline-adherent delirium care may improve its detection, assessment and management. AIM: To inform a future definitive study that tests whether an implementation strategy designed to improve guideline-adherent delirium care in palliative care settings improves patient outcomes (reduced proportion of in-patient days with delirium). DESIGN: With Patient Involvement members, we conducted a feasibility study to assess the acceptability of and engagement with the implementation strategy by hospice staff (intervention), and whether clinical record data collection of process (e.g. guideline-adherent delirium care) and clinical outcomes (evidence of delirium using a validated chart-based instrument;) pre- and 12-weeks post-implementation of the intervention would be possible. SETTING/PARTICIPANTS: In-patient admissions in three English hospices. RESULTS: Between June 2021 and December 2022, clinical record data were extracted from 300 consecutive admissions. Despite data collection during COVID-19, target clinical record data collection (n = 300) was achieved. Approximately two-thirds of patients had a delirium episode during in-patient stay at both timepoints. A 6% absolute reduction in proportion of delirium days in those with a delirium episode was observed. Post-implementation improvements in guideline-adherent metrics include: clinical delirium diagnosis 15%-28%; delirium risk assessment 0%-16%; screening on admission 7%-35%. CONCLUSIONS: Collection of data on delirium outcomes and guideline-adherence from clinical records is feasible. The signal of patient benefit supports formal evaluation in a large-scale study.

Inoperable malignant bowel obstruction: palliative interventions outcomes - mixed-methods systematic review.

BACKGROUND: Parenteral nutrition (PN) and palliative venting gastrostomies (PVG) are two interventions used clinically to manage inoperable malignant bowel obstruction (MBO); however, little is known about their role in clinical and quality-of-life outcomes to inform clinical decision making. AIM: To examine the impact of PN and PVG on clinical and quality-of-life outcomes in inoperable MBO. DESIGN: A mixed-methods systematic review and narrative synthesis. DATA SOURCES: The following databases were searched (from inception to 29 April 2021): MEDLINE, Embase, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Bielefeld Academic Search Engine, Health Technology Assessment and CareSearch for qualitative or quantitative studies of MBO, and PN or PVG. Titles, abstracts and papers were independently screened and quality appraised. RESULTS: A total of 47 studies representing 3538 participants were included. Current evidence cannot tell us whether these interventions improve MBO survival, but this was a firm belief by patients and clinicians informing their decision. Both interventions appear to allow patients valuable time at home. PVG provides relief from nausea and vomiting. Both interventions improve quality of life but not without significant burdens. Nutritional and performance status may be maintained or improved with PN. CONCLUSION: PN and PVG seem to allow valuable time at home. We found no conclusive evidence to show either intervention prolonged survival, due to the lack of randomised controlled trials that have to date not been performed due to concerns about equipoise. Well-designed studies regarding survival for both interventions are needed. PROSPERO REGISTRATION NUMBER: CRD42020164170.

Creating more comparable cohorts in observational palliative care studies: A proposed framework to improve applicability and replicability of research.

BACKGROUND: Palliative care is characterised by heterogeneous patient and caregiver populations who are provided care in different health systems and a research base including a large proportion of observational, mostly retrospective studies. The inherent diversity of palliative care populations and the often inadequate study descriptions challenge the application of new knowledge into practice and reproducibility for confirmatory studies. Being able to define systematically study populations would significantly increase their generalisability and effective translation into practice. PROPOSAL: Based on an informal consensus process by active palliative care researchers challenged by this problem and a review of the current evidence, we propose an approach to creating more comparable cohorts in observational (non-randomised) palliative care studies that relies on defining the study population in relation to a fixed, well-defined event from which analyses are built ('anchoring'). In addition to providing a detailed and complete description of the study population, anchoring is the critical step in creating more comparable cohorts in observational palliative care studies. Anchoring can be done with respect to a single or multiple data points, and can support both prospective and retrospective data collection and analysis. DISCUSSION: Anchoring the cohort to reproducible data points will help create more comparable cohorts in palliative care whilst mitigating its inherent heterogeneity. This, in turn, will help optimise the generalisability, applicability and reproducibility of observational palliative care studies to strengthen the evidence base and improve practice.

Homecare workers needs and experiences in end of life care: rapid review.

BACKGROUND: Social homecare workers provide essential care to those living at home at the end of life. In the context of a service experiencing difficulties in attracting and retaining staff, we have limited knowledge about the training, support needs and experiences of this group. AIM: To gain a timely understanding from the international literature of the experience, training and support needs of homecare workers providing end-of-life care. METHODS: We conducted a rapid review and narrative synthesis using the recommendations of the Cochrane Rapid Reviews Methods Group. Building on a previous review, social homecare worker and end-of-life search terms were used to identify studies. Quality appraisal was conducted using a multimethods tool. DATA SOURCES: CINAHL and Medline databases (2011-2023; English language). RESULTS: 19 papers were included representing 2510 participants (91% women) providing new and deeper insights. Four themes were generated: (1) emotional support; homecare workers need to manage complex and distressing situations, navigating their own, their clients' and clients' family, emotions; (2) interaction with other social and healthcare workers; homecare workers are isolated from, and undervalued and poorly understood by the wider healthcare team; (3) training and support; recognising the deteriorating client, symptom management, practicalities around death, communications skills and supervision; (4) recognising good practice; examples of good practice exist but data regarding effectiveness or implementation of interventions are scant. CONCLUSIONS: Social homecare workers are essential for end-of-life care at home but are inadequately trained, often isolated and underappreciated. Our findings are important for policy-makers addressing this crucial challenge, and service providers in social and healthcare.

Dyspnoea in acutely ill mechanically ventilated adult patients: an ERS/ESICM statement.

This statement outlines a review of the literature and current practice concerning the prevalence, clinical significance, diagnosis and management of dyspnoea in critically ill, mechanically ventilated adult patients. It covers the definition, pathophysiology, epidemiology, short- and middle-term impact, detection and quantification, and prevention and treatment of dyspnoea. It represents a collaboration of the European Respiratory Society (ERS) and the European Society of Intensive Care Medicine (ESICM). Dyspnoea ranks among the most distressing experiences that human beings can endure. Approximately 40% of patients undergoing invasive mechanical ventilation in the intensive care unit (ICU) report dyspnoea, with an average intensity of 45 mm on a visual analogue scale from 0 to 100 mm. Although it shares many similarities with pain, dyspnoea can be far worse than pain in that it summons a primal fear response. As such, it merits universal and specific consideration. Dyspnoea must be identified, prevented and relieved in every patient. In the ICU, mechanically ventilated patients are at high risk of experiencing breathing difficulties because of their physiological status and, in some instances, because of mechanical ventilation itself. At the same time, mechanically ventilated patients have barriers to signalling their distress. Addressing this major clinical challenge mandates teaching and training, and involves ICU caregivers and patients. This is even more important because, as opposed to pain which has become a universal healthcare concern, very little attention has been paid to the identification and management of respiratory suffering in mechanically ventilated ICU patients.

Dyspnoea in acutely ill mechanically ventilated adult patients: an ERS/ESICM statement.

This statement outlines a review of the literature and current practice concerning the prevalence, clinical significance, diagnosis and management of dyspnoea in critically ill, mechanically ventilated adult patients. It covers the definition, pathophysiology, epidemiology, short- and middle-term impact, detection and quantification, and prevention and treatment of dyspnoea. It represents a collaboration of the European Respiratory Society and the European Society of Intensive Care Medicine. Dyspnoea ranks among the most distressing experiences that human beings can endure. Approximately 40% of patients undergoing invasive mechanical ventilation in the intensive care unit (ICU) report dyspnoea, with an average intensity of 45 mm on a visual analogue scale from 0 to 100 mm. Although it shares many similarities with pain, dyspnoea can be far worse than pain in that it summons a primal fear response. As such, it merits universal and specific consideration. Dyspnoea must be identified, prevented and relieved in every patient. In the ICU, mechanically ventilated patients are at high risk of experiencing breathing difficulties because of their physiological status and, in some instances, because of mechanical ventilation itself. At the same time, mechanically ventilated patients have barriers to signalling their distress. Addressing this major clinical challenge mandates teaching and training, and involves ICU caregivers and patients. This is even more important because, as opposed to pain which has become a universal healthcare concern, very little attention has been paid to the identification and management of respiratory suffering in mechanically ventilated ICU patients.

Fear of giving birth alone: Experiences of psychological distress, symptoms of anxiety and depression, and coping- strategies of childbearing women during COVID-19.

BACKGROUND: Psychological distress during pregnancy is a well-documented risk factor for adverse maternal outcomes. Distress related to the COVID-19 pandemic may further increase the vulnerability of pregnant women to negative mental health outcomes. AIM: To explore the mental health experiences of pregnant women, focusing on mental health outcomes, challenges related to the pandemic, coping strategies, and factors buffering mental health factors during the restricted COVID-19 lockdown period. METHODS: A mixed-methods survey study was conducted, examining symptoms of anxiety, depression, and burnout among 21 pregnant women. Qualitative data were gathered through open-ended questions about participants' experiences of challenges, coping strategies and buffering factors amid the pandemic. Symptoms of anxiety, depression and burnout were calculated, and qualitative data was thematically analyzed. RESULTS: Approximately one-third (24 %) of the respondents reported clinically significant levels of depression, 19 % reported clinically significant levels of anxiety, and 43 % reported experiencing burnout. All participants reported distress and emotional burden, including fear, worry, stress and anxiety related to the pandemic. Specific concerns such as fear of giving birth alone, fear of the consequences due to lockdown restrictions, insufficient information, disruption of prenatal healthcare services, and fear of miscarriage were prevalent among the participants. Social support, financial stability, stable relationships, adherence to daily routines, reduced stress and social demands, a calmer daily life, physical activity, and less work-related stress including working from home, emerges as buffering factors that aided women in coping with pandemic-related distress. CONCLUSION: Healthcare providers should prioritize stability, predictability, and minimizing disruptions to prenatal care. Broad-based screening is crucial to identify women at risk of depression, anxiety, and burnout. Recommendations for clinical pathways aimed at pregnant women are discussed.

Correction: Supported: Supporting, enabling, and sustaining homecare workers to deliver end-of-life care: A qualitative study protocol.

[This corrects the article DOI: 10.1371/journal.pone.0291525.].

Turning a Curve: How People Use Everyday Resources to Negotiate Recovery From Cancer Treatment With Curative Intent.

Many more cancers are treated with intent to cure now than in previous decades, but for most, this involves significant effects from which people need to recover psychologically and socially, as well as physically. This longitudinal photo-elicitation interview study uses grounded theory to explain how people discharged from specialist care made use of everyday social and material resources to manage this process at home. Recovery is presented as a curve in life's pathway requiring gradual reorientation, drawing on social worlds and domestic resources to calibrate this process. Findings are described in three stages: (1) responding to diagnosis and treatment, (2) using social resources for meaning-making, and (3) developing assets for recovery. During treatment, participants drew on past identities to reinforce their sense of self, and personalized health care communication supported this process. In the weeks after treatment, new frameworks of understanding were constructed from perspectives on cancer encountered in the family, workplace, and outpatient clinics. Recovery processes included the negotiation of personal change, the renegotiation of close relationships, and the use of everyday resources to regain three sensations: control, comfort, and continuity. Supportive care would benefit from an individualized exploration of the assets that can help people to negotiate this challenging phase as treatment comes to a close. Possibilities for self-care (the maintenance of health and well-being in the context of everyday life) can be explored and assessed through personalized discussion around the identities, social worlds, and everyday resources available to each individual.

Exploring pathways to optimise care in malignant bowel obstruction (EPOC): Protocol for a three-phase critical realist approach to theory-led intervention development for shared decision-making.

INTRODUCTION: Malignant bowel obstruction is a distressing complication of cancer, causing pain, nausea and vomiting, and often has a poor prognosis. Severe and rapidly developing symptoms, a lack of robust clinical guidelines and the need for multidisciplinary input make treatment decision-making challenging. Sharing decision-making with people with malignant bowel obstruction and their caregivers can be difficult, and inconsistent communication creates serious deficiencies in care by amplifying patients' distress and uncertainty. Little attention has been paid to the implicit influences on this process-for example, the role of discipline-related norms and the beliefs of decision-makers. This study will explore how these processes work and develop interventions to improve shared decision-making. METHODS AND ANALYSIS: Exploring Pathways to Optimise Care (EPOC) is a three-phase study set within a critical realist framework: (i) realist review, to develop explanatory theory describing collaborative decision-making in the management of malignant bowel obstruction; (ii) an in-depth interview study using modified grounded theory to explore the active ingredients of this collaboration in practice settings; and (iii) the presentation to stakeholders (practitioners, patients and caregivers) of integrated results from Phase I (theory developed from the literature) and Phase II (theory developed from current practice) as a basis for intervention mapping. We aim to produce recommendations to address the challenges, and to develop a set of tools to (i) aid interaction around shared decision-making and (ii) aid interprofessional interaction around the management of this condition. Registration details: The realist review is registered with PROSPERO (CRD42022308251).

Hospital admissions in the last year of life of patients with heart failure.

AIM: To explore the frequency, causes, and pattern of hospitalisation for patients with chronic heart failure (HF) in the 12 months preceding death. We also investigated cause of death. METHODS: Patients referred to a secondary care HF clinic were routinely consented for follow-up between 2001 and 2020 and classified into three phenotypes: (i) HF with reduced ejection fraction (HFrEF), (ii) HF with preserved ejection fraction (HFpEF) with plasma N-terminal pro B-type natriuretic peptide (NT-proBNP) 125-399 ng L-1, and (iii) HFpEF with NT-proBNP ≥400 ng L-1. Hospital admissions in the last year of life were classified as: HF, other cardiovascular (CV), or non-cardiovascular (non-CV). The cause of death was systematically adjudicated. RESULTS: A total of 4925 patients (38% women; median age at death 81 [75-87] years) had 9127 hospitalisations in the last year of life. The median number of hospitalisations was 2 (1-3) and total days spent in hospital was 12 (2-25). Out of the total, 83% of patients had ≥1 hospitalisation but only 20% had ≥1 HF hospitalisation; 24% had ≥1 CV hospitalisation; 70% had ≥1 non-CV hospitalisation. Heart failure hospitalisations were most common in patients with HFrEF, but in all groups, at least two thirds of admissions were for non-CV causes. There were 788 (16%) deaths due to progressive HF, of which 74% occurred in hospital. CONCLUSION: For patients with chronic HF in the last year of life, most hospitalisations were for non-CV causes regardless of HF phenotype. Most patients had no HF hospitalisations in their last year of life. Most deaths were from causes other than progressive HF.

Livestreaming Technology and Online Child Sexual Exploitation and Abuse: A Scoping Review.

Livestreaming of child sexual abuse (LSCSA) is an established form of online child sexual exploitation and abuse (OCSEA). However, only a limited body of research has examined this issue. The Covid-19 pandemic has accelerated internet use and user knowledge of livestreaming services emphasizing the importance of understanding this crime. In this scoping review, existing literature was brought together through an iterative search of eight databases containing peer-reviewed journal articles, as well as grey literature. Records were eligible for inclusion if the primary focus was on livestream technology and OCSEA, the child being defined as eighteen years or younger. Fourteen of the 2,218 records were selected. The data were charted and divided into four categories: victims, offenders, legislation, and technology. Limited research, differences in terminology, study design, and population inclusion criteria present a challenge to drawing general conclusions on the current state of LSCSA. The records show that victims are predominantly female. The average livestream offender was found to be older than the average online child sexual abuse offender. Therefore, it is unclear whether the findings are representative of the global population of livestream offenders. Furthermore, there appears to be a gap in what the records show on platforms and payment services used and current digital trends. The lack of a legal definition and privacy considerations pose a challenge to investigation, detection, and prosecution. The available data allow some insights into a potentially much larger issue.

Triggered by worry: A dynamic network analysis of COVID-19 pandemic-related anxiety and parental stress.

BACKGROUND: Major disruptions to daily life routines made families and parents particularly vulnerable to psychological distress during the COVID-19 lockdowns. However, the specific psychopathological processes related to within-person variation and maintenance of anxiety symptomatology and parental distress components in the parental population have been largely unexplored in the literature. METHODS: In this preregistered intensive longitudinal study, a multilevel dynamic network was used to model within-person interactions between anxiety symptomatology, psychopathological processes, parental distress, and protective lifestyle components in a sample of 495 parents-each responding to daily assessments over a 40-day period. A total of 30,195 observations were collected across the subjects. RESULTS: Extensive worry, threat monitoring, and uncontrollability of worry were identified as overreaching psychopathological processes related to the aggravation of other symptoms of anxiety and parental distress. A strong association was found between parental stress and parental burnout. Anger toward one's child was associated with both parental stress and parental burnout. Protective factors showed the lowest strength centrality, with few and weak connections to other symptoms and processes in the network. LIMITATIONS: Associations may exist between the study variables on a different time scale; hence, different time lags should be used in future research. CONCLUSIONS: Accessible, low-cost interventions that address worry, threat monitoring, and the uncontrollability of worry could serve as potential targets for reducing the symptom burden of anxiety and distress in the parental population.

Supported: Supporting, enabling, and sustaining homecare workers to deliver end-of-life care: A qualitative study protocol.

BACKGROUND: Homecare workers provide essential care at home for people at end-of-life but are often poorly trained and supported. AIM: To explore the experiences and needs of homecare workers and the views of homecare clients and carers, and other community-based health and social care staff about the homecare worker role, including identification of good practice. METHODS: In this qualitative exploratory study, we will conduct 150 semi-structured interviews with homecare workers within three geographic English localities chosen for maximum socio-demographic variation. Eligible participants will be consenting adults providing care services (workers [n = 45], managers [n = 15] community practitioners [n = 30]), receiving care (clients thought to be in the last 6 months of life [n = 30], family carers [n = 15], or commissioners of homecare services supporting end-of-life care [n = 15]. Interviews may adopt a Pictor-guided or standard semi-structured approach according to their preference. Managers and commissioners can contribute to an online focus group if preferred. A range of recruitment strategies will be used, including through homecare agencies, local authorities, local NHS services, charities, voluntary sector groups and social media. Interviews and focus groups will be recorded, transcribed, anonymised, and analysed adopting a case-based approach for each geographic area within-case and then comparison across cases using reflexive thematic analysis. The design and analysis will be informed by Bronfenbrenner's Adapted Ecological Systems theory. This study is registered on the Research Registry (No.8613). CONTRIBUTION: We will provide evidence on ways to improve the experiences and address the needs of homecare workers in relation to caring for people nearing end-of-life. It will offer insight into good practice around supporting homecare workers including responding to their training and development needs. Findings will inform subsequent stages of an evaluation-phase study of a training resource for homecare workers.

BREATHLEssness in INDIA (BREATHE-INDIA)-Study protocol for the co-design of a community breathlessness intervention in India using realist methods and intervention mapping.

BACKGROUND: Breathlessness that persists despite treatment of causal disease(s) is disabling, associated with high therapy-related costs and poor socioeconomic outcomes. Low resource countries bear a disproportionate burden of respiratory problems, often characterised by disabling breathlessness. Low-cost self-management breathlessness-targeted interventions are effective and deliverable in community settings but have been developed in high-income countries. We aim to understand how breathlessness self-management works in 'real life' populations and cultural contexts, to develop programme theory and co-design a prototype intervention to improve persistent breathlessness management in India. METHODS AND ANALYSIS: Using a Realist approach, Intervention Mapping and the Medical Research Council Complex Intervention Framework we will undertake two phases of work supported by our Expert Group (of respiratory, primary, palliative care physicians) and key stakeholder groups (opinion leader clinicians, community health workers and people with lived experiences of breathlessness). 1) Realist review and evaluation to identify and refine evidence and theory for breathlessness self-management, producing intervention and implementation programme theory. We will identify literature through our Expert Group, scoping searches and systematic searches (Medline, Ebscohost, CINAHL, Scopus, Psychinfo). We will map intervention components to 'what works, for whom, and where.' 2) Intervention development using Intervention Mapping to map intervention and implementation programme theory to intervention components, develop materials to support intervention delivery, and co-design a prototype educational intervention ready for early acceptability and delivery-feasibility testing and evaluation planning in India. Use of stakeholder groups is to allow people with experience of breathlessness and/or its management to contribute their views on content developed by our team based upon review of secondary data sources. Experts and Stakeholders are therefore not research subjects but are included as extended members of the study team and will not follow informed consent procedures. Experts and stakeholders will be acknowledge in outputs arising from our project if they wish to be. Our review conduct will be consistent with RAMESES quality standards. DISCUSSION: At the conclusion of our study, we will have co-designed a breathlessness intervention for use in the community setting in India ready for further evaluation of: effectiveness, socioeconomic outcomes, acceptability and transferability to other low resource settings.