Postgraduate students’ perception of research ethics training: a qualitative study

Unethical practices undermine research findings, and destroy societal trust in research and researchers.  Formal ethics training for researchers is widely supported, and has been adopted by many organisations, including the NHS.  However, a wide variation in what constitutes ethics training is apparent.  This paper outlines a study that explored the perceptions of research ethics training amongst postgraduate nursing students undertaking research on human subjects.  A combination of six focus groups and four one-to-one interviews were undertaken.  Three significant themes emerged, each representing different aspects of the teaching process.  First, time and timeliness, underlining the importance of the timing of training, but with the need for ongoing access to resources.  Second, content and delivery, where the differences between the principles and processes, and the mechanisms required to address both aspects, was raised.  Finally, assessment, where the difficulties of useful assessment were discussed.  Participants emphasised the need to differentiate between the principles and processes of ethics teaching.  This paper argues that both aspects require different approaches to disseminating information, with timing of access to teaching and resources requiring critical consideration

Student nurses’ experiences of restraint − a qualitative study

Background/AimsRestraint is a complex issue that is associated with multiple legal and ethical challenges. National scandals have highlighted a lack of adequate training among healthcare staff in restraint. While education should start with nurses in training, evidence suggests that the experiences of student nurses in relation to restraint has not been addressed. This study aimed to explore the lived experiences of student nurses when encountering restraint.MethodsA qualitative methodology was used to investigate student nurse experiences of restraint. Seven semi-structured interviews were undertaken with student nurses in their second (n=3) and third year (n=4) of an undergraduate nursing degree, with a specialism in mental health nursing. Data were analysed using a thematic analysis approach.ResultsThree overarching themes were identified from the data: a ‘clinical–theory gap’, referring to a gap in students’ theoretical learning and clinical placements; ‘learning from each other’, where students felt a need for increased shared learning surrounding restraint; ‘wellbeing’, highlighting a lack of sufficient supportive and timely interventions to appropriately aid student wellbeing after witnessing restraint.ConclusionsThese findings highlight the need for improved communication between higher education institutions and clinical practice in relation to restraint. Opportunities for debriefs within higher education learning environments should be considered in order to improve student nurses’ wellbeing and experiences of their nursing degree programme

Socioeconomic inequalities in pregnancy outcome associated with Down syndrome: a population-based study.

OBJECTIVE: To investigate socioeconomic inequalities in outcome of pregnancy associated with Down syndrome (DS) compared with other congenital anomalies screened for during pregnancy. DESIGN AND SETTING: Retrospective population-based registry study (East Midlands & South Yorkshire in England). PARTICIPANTS: All registered cases of DS and nine selected congenital anomalies with poor prognostic outcome (the UK Fetal Anomaly Screening Programme (FASP)9) with an end of pregnancy date between 1 January 1998 and 31 December 2007. MAIN OUTCOME MEASURES: Poisson regression models were used to explore outcome measures, including socioeconomic variation in rates of anomaly; antenatal detection; pregnancy outcome; live birth incidence and neonatal mortality. Deprivation was measured using the Index of Multiple Deprivation 2004 at super output area level. RESULTS: There were 1151 cases of DS and 1572 cases of the nine severe anomalies combined. The overall rate of antenatal detection was 57% for DS, which decreased with increasing deprivation (rate ratio comparing the most deprived tenth with the least deprived: 0.76 (0.60 to 0.97)). Antenatal detection rates were considerably higher for FASP9 anomalies (86%), with no evidence of a trend with deprivation (0.99 95% CI (0.84 to 1.17)). The termination of pregnancy rate following antenatal diagnosis was higher for DS (86%) than the FASP9 anomalies (70%). Both groups showed wide socioeconomic variation in the termination of pregnancy rate (rate ratio: DS: 0.76 (0.58 to 0.99); FASP9 anomalies: 0.80 (0.65 to 0.97)). Consequently, socioeconomic inequalities in live birth and neonatal mortality rates associated with these anomalies arise that were not observed in utero. CONCLUSIONS: Socioeconomic inequalities exist in the antenatal detection of DS, and subsequent termination rates are much higher for DS than other anomalies. Termination rates for all anomalies are lower in more deprived areas leading to wide socioeconomic inequalities in live born infants with a congenital anomaly, particularly DS, and subsequent neonatal mortality

Managing uncertainty: Physicians' decision-making for stroke prevention for patients with atrial fibrillation and intracerebral haemorrhage.

Background Stroke prevention in patients with atrial fibrillation (AF) post-intracerebral haemorrhage (ICH) is an area of clinical equipoise. Little is known about the tools and processes that physicians use to make decisions regarding anticoagulation in this high-risk patient population. Objective To explore physicians' decision-making process regarding stroke prevention in patients with AF and a recent history of ICH. Method Qualitative study, utilising semi-structured interviews and analysed using Framework analysis. Results Twenty physicians from five European countries (Austria, France, Germany, Spain, United Kingdom) participated. The over-arching theme 'Managing uncertainty', addressed the process of making high-risk clinical decisions in the context of little available robust clinical evidence for best practice. Three sub-themes were identified under the umbrella theme: (1) 'Computing the Risks', captured the challenge of balancing the risks of ischaemic stroke with the risk of recurrent ICH in a complex patient population; (2) 'Patient Factors' highlighted the influence that patients' beliefs and previous experience of stroke had on physicians' decisions; and (3) 'Making a Decision' explored the process of reaching a final decision regarding initiation of OAC therapy or not. Conclusion Physicians described the process of deciding on stroke prevention in patients with AF post-ICH as 'challenging' due to considerable 'clinical equipoise'. Key factors that affected decision-making was patient comorbidities, functional status, and patient willingness to engage with oral anticoagulation therapy. Shared decision-making was believed to be beneficial, but physicians believed that the ultimate responsibility to decide on stroke prevention lay with the clinician

AI-based derivation of atrial fibrillation phenotypes in the general and critical care populations

BACKGROUND: Atrial fibrillation (AF) is the most common heart arrhythmia worldwide and is linked to a higher risk of mortality and morbidity. To predict AF and AF-related complications, clinical risk scores are commonly employed, but their predictive accuracy is generally limited, given the inherent complexity and heterogeneity of patients with AF. By classifying different presentations of AF into coherent and manageable clinical phenotypes, the development of tailored prevention and treatment strategies can be facilitated. In this study, we propose an artificial intelligence (AI)-based methodology to derive meaningful clinical phenotypes of AF in the general and critical care populations.METHODS: Our approach employs generative topographic mapping, a probabilistic machine learning method, to identify micro-clusters of patients with similar characteristics. It then identifies macro-cluster regions (clinical phenotypes) in the latent space using Ward's minimum variance method. We applied it to two large cohort databases (UK-Biobank and MIMIC-IV) representing general and critical care populations.FINDINGS: The proposed methodology showed its ability to derive meaningful clinical phenotypes of AF. Because of its probabilistic foundations, it can enhance the robustness of patient stratification. It also produced interpretable visualisation of complex high-dimensional data, enhancing understanding of the derived phenotypes and their key characteristics. Using our methodology, we identified and characterised clinical phenotypes of AF across diverse patient populations.INTERPRETATION: Our methodology is robust to noise, can uncover hidden patterns and subgroups, and can elucidate more specific patient profiles, contributing to more robust patient stratification, which could facilitate the tailoring of prevention and treatment programs specific to each phenotype. It can also be applied to other datasets to derive clinically meaningful phenotypes of other conditions.FUNDING: This study was funded by the DECIPHER project (LJMU QR-PSF) and the EU project TARGET (10113624).</p

Supermarket/Hypermarket Opportunistic Screening for Atrial Fibrillation (SHOPS-AF): A Mixed Methods Feasibility Study Protocol

Aims: Atrial fibrillation (AF) is the most common sustained cardiac arrhythmia and a key risk factor for ischaemic stroke. Following AF detection, treatment with oral anticoagulation can significantly lower mortality and morbidity rates associated with this risk. The availability of several hand-held devices which can detect AF may enable trained health professionals to adopt AF screening approaches which do not interfere with people’s daily routines. This study aims to investigate the effectiveness of a hand-held device (the MyDiagnostick single-lead Electrocardiogram (ECG) sensor) in screening for AF when embedded into the handles of supermarket trolleys. Methods: A mixed methods two-phase approach will be taken. The quantitative first phase will involve the recruitment of 2000 participants from a convenience sample at four large supermarkets with pharmacies. Prospective participants will be asked to conduct their shopping using a trolley embedded with a MyDiagnostick sensor. If the device identifies a participant with AF, the in-store pharmacist will be dispatched to take a manual pulse measurement and a static control sensor reading and offer a cardiologist consultation referral. When the sensor does not detect AF, a researcher will confirm the reading with a manual pulse measurement. ECGs will be compiled, and the sensitivity, specificity and positive and negative predictive values will be determined. A qualitative second phase will consist of semi-structured interviews carried out with those pharmacists and store managers in-store during the running of the trial period. These will explore the perceptions of staff regarding the merits of embedding sensors in the handles of supermarket trolleys to detect AF. Conclusion: This feasibility study will inform a larger future definitive trial

Supermarket/Hypermarket Opportunistic Screening for Atrial Fibrillation (SHOPS-AF) using sensors embedded in the handles of supermarket trolleys: A feasibility study

BackgroundAtrial fibrillation (AF) increases the risk of death, stroke, heart failure, cognitive decline, and healthcare costs but is often asymptomatic and undiagnosed. There is currently no national screening programme for AF. The advent of validated hand-held devices allows AF to be detected in non-healthcare settings, enabling screening to be undertaken within the community. Method and ResultsIn this novel observational study, we embedded a MyDiagnostick single lead ECG sensor into the handles of shopping trolleys in four supermarkets in the Northwest of England: 2155 participants were recruited. Of these, 231 participants either activated the sensor or had an irregular pulse, suggesting AF. Some participants agreed to use the sensor but refused to provide their contact details, or consent to pulse assessment. In addition, some data were missing, resulting in 203 participants being included in the final analyses. Fifty-nine participants (mean age 73.6 years, 43% female) were confirmed or suspected of having AF; 20 were known to have AF and 39 were previously undiagnosed. There was no evidence of AF in 115 participants and the remaining 46 recordings were non-diagnostic, mainly due to artefact. Men and older participants were significantly more likely to have newly diagnosed AF. Due to the number of non-diagnostic ECGs (n=46), we completed three levels of analyses, excluding all non-diagnostic ECGs, assuming all non-diagnostic ECGs were masking AF, and assuming all non-diagnostic ECGs were not AF. Based on the results of the three analyses, the sensor's sensitivity (95% CI) ranged from 0.70 - 0.93; specificity from 0.15 - 0.97; positive predictive values (PPV) and negative predictive values (NPV) ranged from 0.24 - 0.56 and 0.55-1.00, respectively. These values should be interpreted with caution, as the ideal reference standard on 1934 participants was imperfect. ConclusionThe study demonstrates that the public will engage with AF screening undertaken as part of their daily routines using hand-held devices. Sensors can play a key role in identifying asymptomatic patients in this way, but the technology must be further developed to reduce the quantity of non-diagnostic ECGs

“Being Guided”: What Oncofertility Patients’ Decisions Can Teach Us About the Efficacy of Autonomy, Agency, and Decision-Making Theory in the Contemporary Critical Encounter

Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of “being guided.” Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests that patients make an informed, autonomous decision to be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters

Adult congenital heart disease: education and preparation of nurses

In this month's BANCC feature, Robyn Lotto, senior lecturer, advanced cardiac nurse practitioner and committee member of BANCC, reflects on the educational needs of cardiac nurses caring for patients with congenital heart defects. </jats:p

Decision-Making about Congenital Anomalies. How do women and their partners make the decision to continue or terminate a pregnancy following suspicion or diagnosis of a severe congenital anomaly?

Background : Around 2-3% of pregnancies are affected by a congenital anomaly. However, anomalies account for around 30% of neonatal mortality in the UK. Whilst the incidence and rates of detection are similar across socioeconomic groups, rates of termination following diagnosis of a severe anomaly are lower in more deprived areas. The reasons for this are unclear and parental decision-making following suspicion or diagnosis of a congenital anomaly is largely unexplored. Aims: To explore the decision-making processes following diagnosis of a congenital anomaly and offer insight into how variations in termination rates arise. Methods: Data from interviews with parents-to-be and clinicians, and recorded consultations were collated. Analysis was undertaken using a constant comparative based approach. Findings: Following diagnosis of a severe congenital anomaly, parents-to-be face the devastating decision of whether to continue or terminate the affected pregnancy. Four typologies of decision-making were identified. These were entitled: Consequential, where parents sought to ‘rationally’ evaluate the best outcome for themselves and the unborn, Absolute, where fundamental beliefs pre-determined the decision taken, Delay/Avoid, where no active decision was made, and parents therefore continued with the pregnancy, and Assess/Reassess. This fourth typology subsequently sub-divided into two groups, Choice Removed, where indecisive parents were ‘pushed’ by clinicians into terminating the pregnancy, and Choice Disturbed, where the breakdown of the parent-clinician relationship resulted in parents disengaging with the clinical environment thus continuing with the affected pregnancy. Each type of decision-making resulted in differing tensions with clinicians who sought enactment of an ‘ideal’ decision-making process. Conclusion: This study provides a valuable insight into the lived experiences of parents. With this comes a greater awareness of the variations in the pathways and processes followed. The recommendations contribute to the understanding of those who determine policy and those who practice within the field of fetal medicine