An insight into healthcare professionals' perspectives on discussing implantable cardioverter defibrillator deactivation.

BACKGROUND: International studies have examined patients' views concerning the discussion of deactivating an implantable cardioverter defibrillator (ICD). Findings reported that many patients were either not informed about the subject or were informed late in their illness trajectory. AIM: To explore healthcare professionals' perspectives on discussing ICD deactivation and identify priorities for clinical practice and future research. METHODS: Eleven interviews were conducted, involving heart failure nurses, physicians, and an allied professional. All were responsible for the care of patients with an ICD, from the United Kingdom or Sweden. A semi-structured guide was used. All interviews were audio-recorded, transcribed, translated (as applicable) and analysed independently by experienced researchers, using framework analysis. Findings were presented, along with published work at a stakeholder meeting, and a consensus agreement was reached on priorities for clinical practice and future research. FINDINGS: Four themes emerged from the exploratory interviews. Healthcare professionals described the discussion about deactivation as challenging, requiring compassion and involvement of family members. They agreed that the topic should be initiated prior to, or shortly after device implantation. This was reflected in the priorities to improve communication, through the increased availability and implementation of prompts and tools, as well as the provision of tailored information to patients and family members. Stakeholders recognised the future potential of digital technology in device education. CONCLUSIONS: Discussing deactivation remains challenging. Healthcare professionals recognised the need to initiate the discussion early, with compassion and involvement of family members. Priorities were agreed by stakeholders, which require clinical implementation and further research.

Placing patient-reported outcomes at the centre of cardiovascular clinical practice: implications for quality of care and management.

Patient-reported outcomes (PROs) provide important insights into patients' own perspectives about their health and medical condition, and there is evidence that their use can lead to improvements in the quality of care and to better-informed clinical decisions. Their application in cardiovascular populations has grown over the past decades. This statement describes what PROs are, and it provides an inventory of disease-specific and domain-specific PROs that have been developed for cardiovascular populations. International standards and quality indices have been published, which can guide the selection of PROs for clinical practice and in clinical trials and research; patients as well as experts in psychometrics should be involved in choosing which are most appropriate. Collaborations are needed to define criteria for using PROs to guide regulatory decisions, and the utility of PROs for comparing and monitoring the quality of care and for allocating resources should be evaluated. New sources for recording PROs include wearable digital health devices, medical registries, and electronic health record. Advice is given for the optimal use of PROs in shared clinical decision-making in cardiovascular medicine, and concerning future directions for their wider application.

Trusting relationships between patients with non-curative cancer and healthcare professionals create ethical obstacles for informed consent in clinical trials: a grounded theory study.

BACKGROUND: Clinical trial participation for patients with non-curative cancer is unlikely to present personal clinical benefit, which raises the bar for informed consent. Previous work demonstrates that decisions by patients in this setting are made within a 'trusting relationship' with healthcare professionals. The current study aimed to further illuminate the nuances of this relationship from both the patients' and healthcare professionals' perspectives. METHODS: Face-to-face interviews using a grounded theory approach were conducted at a regional Cancer Centre in the United Kingdom. Interviews were performed with 34 participants (patients with non-curative cancer, number (n) = 16; healthcare professionals involved in the consent process, n = 18). Data analysis was performed after each interview using open, selective, and theoretical coding. RESULTS: The 'Trusting relationship' with healthcare professionals underpinned patient motivation to participate, with many patients 'feeling lucky' and articulating an unrealistic hope that a clinical trial could provide a cure. Patients adopted the attitude of 'What the doctor thinks is best' and placed significant trust in healthcare professionals, focusing on mainly positive aspects of the information provided. Healthcare professionals recognised that trial information was not received neutrally by patients, with some expressing concerns that patients would consent to 'please' them. This raises the question: Within the trusting relationship between patients and healthcare professionals, 'Is it possible to provide balanced information?'. The theoretical model identified in this study is central to understanding how the trusting professional-patient relationship influences the decision-making process. CONCLUSION: The significant trust placed on healthcare professionals by patients presented an obstacle to delivering balanced trial information, with patients sometimes participating to please the 'experts'. In this high-stakes scenario, it may be pertinent to consider strategies, such as separation of the clinician-researcher roles and enabling patients to articulate their care priorities and preferences within the informed consent process. Further research is needed to expand on these ethical conundrums and ensure patient choice and autonomy in trial participation are prioritised, particularly when the patient's life is limited.

Challenges in heart failure care in four European countries: a comparative study.

BACKGROUND: In Europe, more than 15 million people live with heart failure (HF). It imposes an enormous social, organizational and economic burden. As a reaction to impending impact on healthcare provision, different country-specific structures for HF-care have been established. The aim of this report is to provide an overview and compare the HF-care approaches of Germany, Ireland, the Netherlands and the UK, and to open the possibility of learning from each other's experience. METHODS: A mixed methods approach was implemented that included a literature analysis, interviews and questionnaires with HF-patients and caregivers, and expert interviews with representatives from healthcare, health service research and medical informatics. RESULTS: The models of HF-care in all countries analyzed are based on the European Society of Cardiology guidelines for diagnosis and treatment of HF. Even though the HF-models differed in design and implementation in practice, key challenges were similar: (i) unequal distribution of care between urban and rural areas, (ii) long waiting times, (iii) unequal access to and provision of healthcare services, (iv) information and communication gaps and (v) inadequate implementation and financing of digital applications. CONCLUSION: Although promising approaches exist to structure and improve HF-care, across the four countries, implementation was reluctant to embrace novel methods. A lack of financial resources and insufficient digitalization making it difficult to adopt new concepts. Integration of HF-nurses seems to be an effective way of improving current models of HF-care. Digital solutions offer further opportunities to overcome communication and coordination gaps and to strengthen self-management skills.

High levels of risk factors and poor secondary prevention for coronary heart disease patients in public hospitals: A descriptive repeated measures study.

BACKGROUND: Secondary prevention is a priority after coronary revascularization for effective long-term cardiovascular care. Coronary Heart Disease is a major health problem in Jordan, but little is known about the current provision of secondary prevention. AIM: The aim of this study was to evaluate risk factors and explore the current provision of secondary Coronary Heart Disease prevention among patients presenting with first-time Coronary Heart Disease at two time points: during hospitalization (Time 1) and 6 months later (Time 2), in multicentre settings in Jordan. METHODS: A descriptive, repeated measures research study design was applied to a consecutive sample of 180 patients with first-time Coronary Heart Disease. Demographic and clinical details were recorded from medical files. Self-administered questionnaires developed by the researchers were used to measure secondary prevention information related to Coronary Heart Disease, including secondary prevention services, lifestyle advice received and medical advice topics. A short form of the International Physical Activity Questionnaire was used to measure physical activity. Participants were assessed at Times 1 and 2. RESULTS: Unstructured lifestyle advice given to the patients at Times 1 and 2 most frequently related to medications, smoking, diet and blood lipids control advice topics, with no statistically significant improvement in cardiovascular risk factors among patients between Times 1 and 2. CONCLUSION: Despite an extremely high prevalence of risk factors in this population, the provision of secondary prevention is poor in Jordan, which requires urgent improvement, and the contribution of nurses' to secondary prevention should be enhanced.

The Need for Breathing Training Techniques: The Elephant in the Heart Failure Cardiac Rehabilitation Room: A Randomized Controlled Trial.

BACKGROUND: Although solid evidence has indicated that respiratory symptoms are common amongst patients with chronic heart failure (CHF), state-of-the-art cardiac rehabilitation (CR) programs do not typically include management strategies to address respiratory symptoms. This study investigated the effect of the addition of breathing exercises (BE) to the CR programs in CHF. METHODS: In a two parallel-arm randomized controlled study (RCT), 40 middle-aged patients with CHF and respiratory symptoms were recruited and randomized into two equal groups (n = 20); group (A): standard CR with BE and group (B): standard CR alone. Primary outcomes were respiratory parameters and secondary outcomes included cardiovascular and cardiopulmonary outcomes. All the participants attended a program of aerobic exercise (three sessions/week, 60-75% MHR, 45-55 min) for 12 weeks, plus educational, nutritional, and psychological counseling. Group (A) patients attended the same program together with BE using inspiratory muscle training (IMT) and breathing calisthenics (BC) (six sessions/week, 15-25 min) for the same duration. RESULTS: There was a significant improvement in the respiratory outcomes, and most of the cardiovascular and cardiopulmonary outcomes in both groups with a greater change percentage in group A (p < 0.05). CONCLUSIONS: These results indicate that the addition of BE to the CR programs in CHF is effective and is a "patient-centered" approach.

The changing role of patients, and nursing and medical professionals as a result of digitalization of health and heart failure care.

AIM: The aim of the study is to discuss the changing role of patients, nurses and doctors in an era of digital health and heart failure care. BACKGROUND: With a growing demand for heart failure care and a shortage of health care professionals to meet it, digital technologies offer a potential solution to overcoming these challenges. EVALUATION: In reviewing pertinent research evidence and drawing on our collective clinical and research experiences, including the co-design and development of an autonomous remote system, DoctorME, we offer some reflections and propose some practical suggestions for nurturing truly collaborative heart failure care. KEY ISSUES: Digital health offers real opportunities to deliver heart failure care, but patients and health care professionals will require digital skills training and appropriate health services technological infrastructure. CONCLUSIONS: Heart failure care is being transformed by digital technologies, and innovations such as DoctorME have profound implications for patients, nurses and doctors. These include major cultural change and health service transformation. IMPLICATIONS FOR NURSING MANAGEMENT: Nurse managers should create inclusive and supportive working environments where collaborative working and digital technologies in heart failure care are embraced. Nurse managers need to recognize, value and communicate the importance of digital health in heart failure care, ensuring that staff have appropriate digital skills training.

CODE-EHR best practice framework for the use of structured electronic healthcare records in clinical research.

Big data is central to new developments in global clinical science aiming to improve the lives of patients. Technological advances have led to the routine use of structured electronic healthcare records with the potential to address key gaps in clinical evidence. The covid-19 pandemic has demonstrated the potential of big data and related analytics, but also important pitfalls. Verification, validation, and data privacy, as well as the social mandate to undertake research are key challenges. The European Society of Cardiology and the BigData@Heart consortium have brought together a range of international stakeholders, including patient representatives, clinicians, scientists, regulators, journal editors and industry. We propose the CODE-EHR Minimum Standards Framework as a means to improve the design of studies, enhance transparency and develop a roadmap towards more robust and effective utilisation of healthcare data for research purposes.

Design and implementation of an online admissions interview for selection to nursing and midwifery programmes: a partnership approach.

BACKGROUND: The recent surge in applications to nursing in the United Kingdom together with the shift towards providing virtual interviews through the use of video platforms has provided an opportunity to review selection methodologies to meet a new set of challenges. However there remains the requirement to use selection methods which are evidence-based valid and reliable even under these new challenges. METHOD: This paper reports an evaluation study of applicants to nursing and midwifery and reports on how to plan and use online interviews for in excess of 3000 applicants to two schools of nursing in Northern Ireland. Data is reported from Participants, Assessors and Administrators who were asked to complete an online evaluation using Microsoft Forms. RESULTS: A total of 1559 participants completed the questionnaire. The majority were aged 17-20. The findings provide evidence to support the validity and reliability of the online interview process. Importantly the paper reports on the design and implementation of a fully remote online interview process that involved a collaboration with two schools of nursing without compromising the rigour of the admissions process. The paper provides practical, quantitative, and qualitative reasons for concluding that the online remote selection process generated reliable data to support its use in the selection of candidates to nursing and midwifery. CONCLUSION: There are significant challenges in moving to online interviews and the paper discusses the challenges and reflects on some of the broader issues associated with selection to nursing and midwifery. The aim of the paper is to provide a platform for discussion amongst other nursing schools who might be considering major changes to their admissions processes.

CODE-EHR best-practice framework for the use of structured electronic health-care records in clinical research.

Big data is important to new developments in global clinical science that aim to improve the lives of patients. Technological advances have led to the regular use of structured electronic health-care records with the potential to address key deficits in clinical evidence that could improve patient care. The COVID-19 pandemic has shown this potential in big data and related analytics but has also revealed important limitations. Data verification, data validation, data privacy, and a mandate from the public to conduct research are important challenges to effective use of routine health-care data. The European Society of Cardiology and the BigData@Heart consortium have brought together a range of international stakeholders, including representation from patients, clinicians, scientists, regulators, journal editors, and industry members. In this Review, we propose the CODE-EHR minimum standards framework to be used by researchers and clinicians to improve the design of studies and enhance transparency of study methods. The CODE-EHR framework aims to develop robust and effective utilisation of health-care data for research purposes.

Exploring the prevalence, impact and experience of cardiac cachexia in patients with advanced heart failure and their caregivers: A sequential phased study.

BACKGROUND: Cardiac Cachexia is a wasting syndrome that has a significant impact on patient mortality and quality of life world-wide, although it is poorly understood in clinical practice. AIM: Identify the prevalence of cardiac cachexia in patients with advanced New York Heart Association (NYHA) functional class and explore its impact on patients and caregivers. DESIGN: An exploratory cross-sectional study. The sequential approach had two phases, with phase 1 including 200 patients with NYHA III-IV heart failure assessed for characteristics of cardiac cachexia. Phase 2 focussed on semi-structured interviews with eight cachectic patients and five caregivers to ascertain the impact of the syndrome. SETTING/PARTICIPANTS: Two healthcare trusts within the United Kingdom. RESULTS: Cardiac Cachexia was identified in 30 out of 200 participants, giving a prevalence rate of 15%. People with cachexia had a significantly reduced average weight and anthropometric measures (p < 0.05). Furthermore, individuals with cachexia experienced significantly more fatigue, had greater issues with diet and appetite, reduced physical wellbeing and overall reduced quality of life. C-reactive protein was significantly increased, whilst albumin and red blood cell count were significantly decreased in the cachectic group (p < 0.05). From qualitative data, four key themes were identified: (1) 'Changed relationship with food and eating', (2) 'Not me in the mirror', (3) 'Lack of understanding regarding cachexia' and (4) 'Uncertainty regarding the future'. CONCLUSIONS: Cardiac cachexia has a debilitating effect on patients and caregivers. Future work should focus on establishing a specific definition and clinical pathway to enhance patient and caregiver support.

Duty of care trumps utilitarianism in multi-professional obesity management decisions.

BACKGROUND: Escalating levels of obesity place enormous and growing demands on Health care provision in the (U.K.) United Kingdom. Resources are limited with increasing and competing demands upon them. Ethical considerations underpin clinical decision making generally, but there is limited evidence regarding the relationship between these variables particularly in terms of treating individuals with obesity. RESEARCH AIM: To investigate the views of National Health Service (NHS) clinicians on navigating the ethical challenges and decision making associated with obesity management in adults with chronic illness. RESEARCH DESIGN: A cross-sectional, multi-site survey distributed electronically. PARTICIPANTS: A consensus sample of nurses, doctors, dietitians and final year students in two NHS Trusts and two Universities. ETHICAL CONSIDERATIONS: Ethical and governance approvals obtained from a National Ethics Committee (11NIR035), two universities and two teaching hospitals. RESULTS: Of the total (n = 395) participants, the majority were nurses (48%), female (79%) and qualified clinicians (59%). Participants strongly considered the individual to have primary responsibility for a healthy weight and an obligation to attempt to maintain that healthy weight if they wish to access NHS care. Yet two thirds would not withhold treatment for patients with obesity. DISCUSSION: While clinicians were clear about patient responsibility and obligations, the majority prioritised their duty of care and would not invoke a utilitarian approach to decision making. This may reflect awareness of obesity as a multi-faceted entity, with responsibility for support and management shared amongst society in general. CONCLUSIONS: The attitudes of this sample of clinicians complemented the concept of the health service as being built on a principle of community, with each treated according to their need. However limited resources challenge the concept of needs-based decisions consequently societal engagement is necessary to agree a pragmatic way forward.

Implantable cardioverter defibrillator (ICD) functionality: patient and family information for advanced decision-making.

As the number of implantable cardioverter defibrillators (ICDs) implanted continues to rise, there is a growing challenge to ensure patients and family members are adequately equipped for involvement in future end-of-life decisions concerning their device. OBJECTIVE: To explore patients', family members' and professionals' attitudes and understanding towards discussing ICD deactivation. METHODS: Case study approach using qualitative interviews and framework analysis. A total of 29 qualitative interviews were undertaken, involving patients with a device, family members and healthcare professionals. Interviews were audio-recorded, transcribed verbatim and analysed using framework analysis. Data were triangulated with information obtained from the patients' medical records (n=10). RESULTS: Three main themes: (1) Professionals were reluctant to engage in conversations concerning deactivation, particularly prior to implantation, believing this was in the patient's best interest. (2) Patients and family members had limited understanding of the implanted device and its functions. It was frequently perceived as 'life-saving' with any negativity of the shock experience seen as acceptable. (3) All patients wanted the opportunity to discuss deactivation when death was imminent, but were indecisive whether family members should be involved. Similarly, some patients felt the decision to deactivate rested solely with the medical profession while others felt it should be a joint decision between patient, family and clinical team. CONCLUSIONS: Patients and family members require improved communication and information concerning their future treatment plan and functionality of an ICD. A proactive approach to discuss deactivation would enable shared clinical decision-making in the advanced stages of illness.

World Heart Federation Roadmap on Atrial Fibrillation - A 2020 Update.

The World Heart Federation (WHF) commenced a Roadmap initiative in 2015 to reduce the global burden of cardiovascular disease and resultant burgeoning of healthcare costs. Roadmaps provide a blueprint for implementation of priority solutions for the principal cardiovascular diseases leading to death and disability. Atrial fibrillation (AF) is one of these conditions and is an increasing problem due to ageing of the world's population and an increase in cardiovascular risk factors that predispose to AF. The goal of the AF roadmap was to provide guidance on priority interventions that are feasible in multiple countries, and to identify roadblocks and potential strategies to overcome them. Since publication of the AF Roadmap in 2017, there have been many technological advances including devices and artificial intelligence for identification and prediction of unknown AF, better methods to achieve rhythm control, and widespread uptake of smartphones and apps that could facilitate new approaches to healthcare delivery and increasing community AF awareness. In addition, the World Health Organisation added the non-vitamin K antagonist oral anticoagulants (NOACs) to the Essential Medicines List, making it possible to increase advocacy for their widespread adoption as therapy to prevent stroke. These advances motivated the WHF to commission a 2020 AF Roadmap update. Three years after the original Roadmap publication, the identified barriers and solutions were judged still relevant, and progress has been slow. This 2020 Roadmap update reviews the significant changes since 2017 and identifies priority areas for achieving the goals of reducing death and disability related to AF, particularly targeted at low-middle income countries. These include advocacy to increase appreciation of the scope of the problem; plugging gaps in guideline management and prevention through physician education, increasing patient health literacy, and novel ways to increase access to integrated healthcare including mHealth and digital transformations; and greater emphasis on achieving practical solutions to national and regional entrenched barriers. Despite the advances reviewed in this update, the task will not be easy, but the health rewards of implementing solutions that are both innovative and practical will be great.

Determinants of acceptance of patients with heart failure and their informal caregivers regarding an interactive decision-making system: a qualitative study.

OBJECTIVE: Heart failure is a growing challenge to healthcare systems worldwide. Technological solutions have the potential to improve the health of patients and help to reduce costs. Acceptability is a prerequisite for the use and a successful implementation of new disruptive technologies. This qualitative study aimed to explore determinants that influence the acceptance of patients and their informal caregivers regarding a patient-oriented digital decision-making solution-a doctor-at-home system. DESIGN: We applied a semistructured design using an interview guide that was based on a theoretical framework influenced by established acceptance theories. The interviews were analysed using a content analysis. SETTING: A multicentred study in four European countries. PARTICIPANTS: We interviewed 49 patients and 33 of their informal caregivers. Most of the patients were male (76%) and aged between 60 and 69 years (43%). Informal caregivers were mostly female (85%). The majority of patients (55%) suffered from heart failure with mild symptoms. RESULTS: Four main categories emerged from the data: needs and expectations, preferences regarding the care process, perceived risk and trust. Participants expressed clear wishes and expectations regarding a doctor-at-home, especially the need for reassurance and support in the management of heart failure. They were receptive to changes to the current healthcare processes. However, trust was identified as an important basis for acceptance and use. Finally, perceived risk for decision-making errors is a crucial topic in need of attention. CONCLUSION: Patients and informal caregivers see clear benefits of digitalisation in healthcare. They perceive that an interactive decision-making system for patients could empower and enable effective self-care. Our results provide important insights for development processes of patient-centred decision-making systems by identifying facilitators and barriers for acceptance. Further research is needed, especially regarding the influence and mitigation of patients and informal caregivers' perceived risks.

The varied role, scope of practice, and education of cardiovascular nurses in ESC-affiliated countries: an ACNAP survey.

AIMS: Cardiovascular disease burden is increasing globally, pressuring nursing staff to deliver high-quality care across a diverse range of treatment areas. As such, an evaluation of the educational preparation of nurses is needed. To determine the current role, scope of practice, education level, and needs of cardiovascular nurses working across the European Society of Cardiology (ESC)-affiliated countries. METHODS AND RESULTS: A short survey was distributed in paper (EuroHeartCare 2018) or electronic format to nurses delivering cardiovascular care. A total of 876 cardiovascular nurses from 26 ESC-affiliated countries completed the survey. Most respondents (79%), were educated to at least bachelor level, with 46% having a masters or doctorate, and were highly motivated to continue their educational development. Despite this, a large number (44.3%) of respondents believed they were not fully prepared for their job. The main areas where further education was requested included acute care in cardiovascular disease (CVD) and CVD risk factor management. Face-to-face courses/training were the most requested delivery mode, followed by E-learning-which appears to be underutilized in this population. Awareness of the existing curricula for cardiovascular nurse education was minimal, and therefore these resources require further promotion and implementation. CONCLUSIONS: This international sample of cardiovascular nurses was generally educated to degree level and motivated to improve their cardiovascular knowledge. Many believed they were underprepared for their role, highlighting the need for increased investment in education. This should be focused on specific needs and delivered using a face-to-face, E-learning, or blended-learning format. Furthermore, increased signposting of existing resources is required.

Self-care research: Where are we now? Where are we going?

BACKGROUND AND OBJECTIVE: The beneficial effects of self-care include improved well-being and lower morbidity, mortality, and healthcare costs. In this article we address the current state of self-care research and propose an agenda for future research based on the inaugural conference of the International Center for Self-Care Research held in Rome, Italy in June 2019. The vision of this Center is a world where self-care is prioritized by individuals, families, and communities and is the first line of approach in every health care encounter. The mission of the Center is to lead the self-care research endeavor, improving conceptual clarity and promoting interdisciplinary work informed by a shared vision addressing knowledge gaps. A focused research agenda can deepen our theoretical understanding of self-care and the mechanisms underlying self-care, which can contribute to the development of effective interventions that improve outcomes. METHODS: During conference discussions, we identified seven major reasons why self-care is challenging, which can be grouped into the general categories of behavior change and illness related factors. We identified six specific knowledge gaps that, if addressed, may help to address these challenges: the influence of habit formation on behavior change, resilience in the face of stressful life events that interfere with self-care, the influence of culture on self-care behavioral choices, the difficulty performing self-care with multiple chronic conditions, self-care in persons with severe mental illness, and the influence of others (care partners, family, peer supporters, and healthcare professionals) on self-care. PLANS TO ACHIEVE RESULTS: To achieve the vision and mission of the Center, we will lead a collaborative program of research that addresses self-care knowledge gaps and improves outcomes, create a supportive international network for knowledge transfer and support of innovations in self-care research, and support and train others in self-care research. Beyond these specific short-term goals, important policy implications of this work are discussed.

Patient and family involvement in escalating concerns about clinical deterioration in acute adult wards: A qualitative systematic review.

BACKGROUND: Despite international standards for recognition and response to deterioration, warning signs are not always identified by staff on acute hospital wards. Patient and family-initiated escalation of care schemes have shown some benefit in assisting early recognition, but are not widely used in many clinical practice areas. OBJECTIVES: To explore (a) patients' and relatives' experiences of acute deterioration and (b) patients', relatives' and healthcare professionals' perceptions of the barriers or facilitators to patient and family-initiated escalation of care in acute adult hospital wards. METHODS: We conducted a qualitative review using Cochrane methodology. Two reviewers independently screened studies, extracted data, and appraised the quality using a qualitative critical appraisal tool. Findings were analysed using thematic synthesis and confidence in findings was assessed using GRADE-CERQual. SEARCH STRATEGY: MEDLINE, CINAHL, EMBASE, PsychINFO databases and grey literature from 2005 to August 2019. INCLUSION CRITERIA: Any research design that had a qualitative element and focused on adult patients' and relatives' experiences of deterioration and perceptions of escalating care. RESULTS: We included five studies representing 120 participants and assessed the certainty of evidence as moderate using GRADE-CERQual. Findings indicated that a number of patients/relatives have the ability to detect acute deterioration, however, various factors act as both barriers and facilitators to being heard. These include personal factors, perceptions of role, quality of relationships with healthcare staff, and organisational factors. Theoretical understanding suggests that patient and relative involvement in escalation is dependent on both inherent capabilities and the factors that influence empowerment. CONCLUSION: This review highlights that patient and family escalation of care interventions need to be designed with the aim of improving patient/relative-clinician collaboration and the sharing of responsibility. RELEVANCE TO PRACTICE: These factors need to be addressed to promote more active partnerships when designing and implementing patient and family-initiated escalation of care interventions.

The impact of psychoeducational interventions on the outcomes of caregivers of patients with heart failure: A systematic review and meta-analysis.

BACKGROUND: Heart failure is a global health care problem that causes a significant economic burden. Despite medical advancements, it's prognosis remains poor as many patients with heart failure experience symptoms that negatively impact Quality of Life. Caregivers are often responsible for helping and supporting family members manage their heart failure symptoms at home. In addition to managing their own medical problems and maintaining social and personal lives, significant burden and stress can occur. At present, caregivers receive little guidance or information to support them in their caregiving role. OBJECTIVES: This review aims to determine the impact of psychoeducational interventions on the outcomes of caregivers of patients with heart failure. DESIGN: Systematic review and meta-analysis. DATA SOURCE: Five electronic databases: PsycINFO, Medline, CINAHL Plus, EMBASE and SCOPUS were searched from June 2007 to August 2019. REVIEW METHODS: The conduct and reporting of this review was based on the Cochrane Handbook for Systematic Reviews of Interventions and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The Cochrane Risk of Bias Tool was used to assess the risk of bias amongst randomised controlled trials, and the Newcastle Ottawa Scale was used to assess risk of bias in one quasi-experimental study. RESULTS: Ten articles met the inclusion criteria, consisting of seven studies, with a total sample size of 953 participants. The pooled result from two studies, conducted in America and China, reported that psychoeducational interventions significantly reduced depression at six months' follow-up (SMD -0.82; 95% CI -1.17 to -0.47; p = 0.73, I2 =0%). The pooled result from two studies conducted in Sweden and Taiwan showed a significant improvement in heart failure knowledge at six months' follow-up (SMD 0.97; 95% CI 0.70 to 1,25; p < 0.00001, I2 =0%). Finally, pooled results from three studies conducted in Sweden, China and Taiwan found a significant improvement in Quality of Life at 3 months' follow- up (SMD 0.25; 95% CI 0.25 to 0.48; p = 0.03). The three most common intervention components included: group based educational sessions, telemonitoring and telephone support, and written resources. CONCLUSIONS: There was no specific type of psychoeducational intervention found to have a significant impact on caregiver outcomes, as interventions were heterogeneous consisting of multiple components. Further research is needed to determine the effectiveness of individual and combined components to identify the ideal intervention format and design for caregivers of patients with heart failure.