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.

Challenges to conducting randomised controlled trials with adults with intellectual disabilities: Experiences of international experts.

BACKGROUND: Globally, conducting randomised controlled trials can be a complex endeavour. The complexity increases when including participants with cognitive or intellectual disabilities. A fuller understanding of the barriers and challenges that can be expected in such trials may help researchers to make their trials more inclusive for people with disabilities. METHOD: Semi-structured interviews were conducted with twelve international trial experts. RESULTS: Eight themes emerged relating to challenges linked to: 1) participant co-morbidities, 2) participant ability levels, 3) ethics and consent, 4) the RCT methodology, 5) gatekeeping, 6) staff turnover, 7) lack of technical understanding and 8) attitudes and perceptions. CONCLUSION: Conducting trials with cognitively disabled participants can pose unique challenges although many can be overcome with 'reasonable adjustments'. Challenges that are harder to overcome are attitudes and perceptions that people (professional staff, funding bodies, carers or fellow researchers) hold towards the utility of conducting trials with cognitively disabled populations.

Using a Delphi survey to gain an international consensus on the challenges of conducting trials with adults with intellectual disabilities.

BACKGROUND/AIMS: People with intellectual disability experience higher rates of multi-morbidity and health inequalities, they are frequently prescribed medications and more likely to have an avoidable or premature death. There is a recognised lack of randomised controlled trials, and subsequently a lack of evidence base, for many of the interventions and treatments provided to people with intellectual disabilities. Very few disability-specific trials are conducted, and people with intellectual, and other cognitive, disabilities are routinely excluded from mainstream trials. There is an urgent need to facilitate more disability-specific trials or to encourage mainstream trialists to include people with disabilities in their studies. Obtaining a thorough understanding of the challenges inherent in these trials, and sharing this knowledge within the research community, may contribute significantly towards addressing this need. The aim of this study was to explore the practical and methodological challenges to conducting trials with adults with intellectual disabilities and to reach a consensus regarding which are the most important challenges for researchers for inclusion in a resource toolkit. METHODS: A three-round modified Delphi survey was conducted with a panel of international trials researchers within the intellectual disability field. Items were assessed in terms of the consensus level and stability of responses. RESULTS: A total of 64 challenges and barriers were agreed upon, across all aspects of the trial pathway, from planning through to reporting. Some challenges and barriers had been noted in the literature previously, but many previously uncited barriers (both systemic and attitudinal) were identified. CONCLUSION: This is the first international survey exploring the experiences of researchers conducting randomised controlled trials with adults with intellectual disabilities. Many of the barriers and challenges reported can be overcome with creativity and some additional resources. Other challenges, including attitudes towards conducting trials with disabled populations, maybe harder to overcome. These findings have implications for conducting trials with other populations with cognitive or communication difficulties. Implications for disability researchers, funding bodies and ethical review panels are discussed.

Patient and Professional Factors That Impact the Perceived Likelihood and Confidence of Healthcare Professionals to Discuss Implantable Cardioverter Defibrillator Deactivation in Advanced Heart Failure: Results From an International Factorial Survey.

BACKGROUND: Rate of implantable cardioverter defibrillator (ICD) implantations is increasing in patients with advanced heart failure. Despite clear guideline recommendations, discussions addressing deactivation occur infrequently. AIM: The aim of this article is to explore patient and professional factors that impact perceived likelihood and confidence of healthcare professionals to discuss ICD deactivation. METHODS AND RESULTS: Between 2015 and 2016, an international sample of 262 healthcare professionals (65% nursing, 24% medical) completed an online factorial survey, encompassing a demographic questionnaire and clinical vignettes. Each vignette had 9 randomly manipulated and embedded patient-related factors, considered as independent variables, providing 1572 unique vignettes for analysis. These factors were determined through synthesis of a systematic literature review, a retrospective case note review, and a qualitative exploratory study. Results showed that most healthcare professionals agreed that deactivation discussions should be initiated by a cardiologist (95%, n = 255) or a specialist nurse (81%, n = 215). In terms of experience, 84% of cardiologists (n = 53) but only 30% of nurses (n = 50) had previously been involved in a deactivation decision. Healthcare professionals valued patient involvement in deactivation decisions; however, only 50% (n = 130) actively involved family members. Five of 9 clinical factors were associated with an increased likelihood to discuss deactivation including advanced age, severe heart failure, presence of malignancy, receipt of multiple ICD shocks, and more than 3 hospital admissions during the previous year. Furthermore, nationality and discipline significantly influenced likelihood and confidence in decision making. CONCLUSIONS: Guidelines recommend that healthcare professionals discuss ICD deactivation; however, practice is suboptimal with multifactorial factors impacting on decision making. The role and responsibility of nurses in discussing deactivation require clarity and improvement.

Exploring the contribution and impact of master's education for leadership development in adult general nursing: A scoping review.

AIM: The aim of this scoping review was to explore the evidence relating to master's education for leadership development in adult/general nurses who are not in advanced practice or leadership roles and its impact on practice. BACKGROUND: The importance of effective, clinical leadership in nursing and health care, has been highlighted following failings reported by Public Inquiries both nationally and internationally. While initiatives have been implemented to address these, the provision of safe, quality care remains problematic. Complex care requires highly skilled professionals to challenge and lead improvements in practice. Master's education results in graduates with the skills and confidence to make these changes and to become the clinical leaders of the future. METHODS: An a priori scoping review protocol was developed by the review team. This was used to undertake searches across CINAHL Ultimate; Medline (Ovid), Scopus and ProQuest Complete databases, chosen due to their relevance to the subject area. Articles were limited to those in the English Language, peer reviewed and published since 2009. Citation chaining via the reference lists of frequently identified articles were also searched. A further search for relevant grey material using the same relevant keywords and phrases was performed using the limited, Trip Database and Google Scholar. RESULTS: Eight articles were selected for data extraction, and these were published between 2011 and 2019. The articles were predominantly from the UK and Europe, with a focus either on master's education or on aspects of leadership in nursing and healthcare. Themes identified: a) The need for clinical leadership; b) master's education for clinical leadership skills; and c) master's education for professional and organisational outcomes. CONCLUSIONS: The scoping review identified that there is a need for strong clinical leadership in the practice setting. Evidence shows that effective nursing leadership can improve patient outcomes as well as enhancing workplace culture and staff retention. The review has shown that the skills required for clinical leadership are those produced by master's education. Studies of the impact of master's education are often self reported and tend to focus on nurses in advanced practice roles. More research is required into master's education for adult/general nurses not in advanced roles and in examining the link between master's education and improved patient, professional and organisational outcomes.

Understanding dietary decision-making in patients attending a secondary prevention clinic following myocardial infarction.

AIMS AND OBJECTIVES: This study aimed to explore the issues that influence the dietary choices made by patients attending a secondary prevention clinic following a myocardial infarction. BACKGROUND: Secondary prevention clinics play an important role in promoting dietary advice, yet evidence suggests that many individuals are neither implementing nor maintaining the lifestyle changes recommended. Research largely focuses on compliance to lifestyle changes in general, and only a small number of quantitative studies address the issues surrounding adherence to dietary advice. DESIGN: Phenomenology was selected as the most appropriate approach for this qualitative study, enabling patients' lived experiences of dietary decision-making to be explored. METHOD: A purposive sample of nine participants was selected from a cardiac secondary prevention clinic. Semi-structured interviews were taped, transcribed and analysed using an interpretative approach. RESULTS: Data analysis produced six central themes contributing to patients' decision-making. Fear, determination and self-control were enabling factors and poor recall of information, a need for additional support and a lack of will power were disabling factors. Findings suggest that patient motivation and ability to make sustainable dietary change can decline as disabling factors reduce determination and self-control, and initial fear of their heart condition subsides. CONCLUSION: In this study, patients' motivation regarding dietary decision-making changed over time and was strongly influenced by a fear of future heart problems. RELEVANCE TO CLINICAL PRACTICE: Health care professionals need to understand the temporal nature of decision-making postmyocardial infarction and adopt a wide repertoire of responsive strategies that support patients to follow a healthy diet in the longer term.

A systematic review of the methodological and practical challenges of undertaking randomised-controlled trials with cognitive disability populations.

Approximately 10% of the world's population have a cognitive disability. Cognitive disabilities can have a profound impact on a person's social, cognitive or mental functioning, requiring high levels of costly health and social support. Therefore, it is imperative that interventions and services received are based upon a sound evidence-base. For many interventions for this population, this evidence-base does not yet exist and there is a need for more Randomised Controlled Trials (RCTs). The process of conducting RCTs with disabled populations is fraught with methodological challenges. We need a better understanding of these methodological barriers if the evidence-bases are to be developed. The purpose of this study was to explore the methodological and practical barriers to conducting trials with adults with cognitive disabilities. As a case example, the literature regarding RCTs for people with intellectual disabilities (ID) was used to highlight these pertinent issues. A systematic literature review was conducted of RCTs with adults with ID, published from 2000 to 2017. A total of 53 papers met the inclusion criteria and were reviewed. Some of the barriers reported were specific to the RCT methodology and others specific to people with disabilities. Notable barriers included; difficulties recruiting; obtaining consent; resistance to the use of control groups; engaging with carers, staff and stakeholders; the need to adapt interventions and resources to be disability-accessible; and staff turnover. Conducting RCTs with people with cognitive disabilities can be challenging, however with reasonable adjustments, many of these barriers can be overcome. Researchers are not maximising the sharing of their experience-base. As a result, the development of evidence-bases remains slow and the health inequities of people with disabilities will continue to grow. The importance of the MRC guidelines on process evaluations, together with implications for the dissemination of 'evidence-base' and 'experience-base' are discussed.

Impact of a web based interactive simulation game (PULSE) on nursing students' experience and performance in life support training--a pilot study.

The delivery of effective life support measures is highly associated with the quality, design and implementation of the education that underpins it. Effectively responding to a critical event is a requirement for all nurses illustrating the need for effective educational approaches from pre-registration training through to enhancing and maintaining life support skills after qualification. This paper reports the findings of utilising a web-based multimedia simulation game PULSE (Platform for Undergraduate Life Support Education). The platform was developed to enhance the student experience of life support education, to motivate on-going learning and engagement and to improve psychomotor skills associated with the provision of Intermediate Life Support (ILS) training. Pre training participants played PULSE and during life support training data was collected from an intervention and a control group of final year undergraduate nursing students (N=34). Quantitative analysis of performance took place and qualitative data was generated from a questionnaire assessing the learning experience. A statistically significant difference was found between the competence the groups displayed in the three skills sets of checking equipment, airway assessment and the safe/effective use of defibrillator at ILS level, and PULSE was positively evaluated as an educational tool when used alongside traditional life support training.

The ethics of non-intervention in a study of patients awaiting coronary artery bypass surgery.

BACKGROUND: Nurses conducting clinical research frequently encounter ethically challenging situations that require careful analysis if the decisions taken are to be in the best interests of participants, researchers and society. There is a lack of literature which discusses the ethical aspects of the nurse's role in clinical research studies. AIM: The aim of this paper is to discuss the ethical conflicts and decisions taken during a combined qualitative and quantitative study of patients' experiences whilst awaiting coronary bypass surgery. DISCUSSION: Ethical conflict arose because, despite having gained ethics approval for a non-interventional study, the researcher became concerned for the health of some research participants, whose condition was observed to have deteriorated. During the course of the study four of the 70 participants died. As a result, changes to the original research protocol were negotiated and subsequently the researcher intervened in cases where participants' clinical condition had worsened. CONCLUSION: Nurses conducting clinical research studies can face serious ethical dilemmas, particularly if participants' health is at risk. This paper demonstrates the potential for both role conflict and role convergence in nursing research. We contend that since the roles of researcher and clinician are not mutually exclusive, the interface between the two requires further discussion. The paper may to help inform other researchers who struggle with the issue of non-intervention when presented with research participants in need of professional nursing care.