Supermarket/hypermarket opportunistic screening for atrial fibrillation (SHOPS-AF) using sensors embedded in the handles of supermarket trolleys: A feasibility study.

BACKGROUND: Atrial 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 program 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 RESULTS: In 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 to 0.93; specificity from 0.15 to 0.97; positive predictive values (PPV) and negative predictive values (NPV) ranged from 0.24 to 0.56 and 0.55 to 1.00, respectively. These values should be interpreted with caution, as the ideal reference standard on 1934 participants was imperfect. CONCLUSION: The 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.

Psychological interventions for depression in adolescent and adult congenital heart disease.

BACKGROUND: Despite improvements in medical care, the quality of life of adults and adolescents with congenital heart disease remains strongly affected by their condition, often leading to depression. Psychotherapy, cognitive behavioural therapy, and other talking therapies may be effective in treating depression in both adults and young adults with congenital heart disease. The aim of this review was to assess the effects of treatments, such as psychotherapy, cognitive behavioural therapies, and talking therapies for treating depression in this population. OBJECTIVES: To evaluate the effects (both harms and benefits) of psychological interventions for reducing symptoms of depression in adolescents (aged 10 to 17 years) and adults with congenital heart disease. Psychological interventions include cognitive behavioural therapy, psychotherapy, or 'talking/counselling' therapy for depression. SEARCH METHODS: We updated searches from the 2013 Cochrane Review by searching CENTRAL, four other databases, and Conference Proceedings Citation Index to 7 March 2023, and two clinical trial registers to February 2021. We applied no language restrictions. SELECTION CRITERIA: Randomised controlled trials (RCTs) comparing psychological interventions to no intervention in the congenital heart disease population, aged 10 years and older, with depression. DATA COLLECTION AND ANALYSIS: Two review authors independently screened titles and abstracts, and independently assessed full-text reports for inclusion. Further information was sought from the authors if needed. Data were extracted in duplicate. We used standard Cochrane methods. Our primary outcome was a change in depression. Our secondary outcomes were: acceptability of treatment, quality of life, hospital re-admission, non-fatal cardiovascular events, cardiovascular behavioural risk factor, health economics, cardiovascular mortality, all-cause mortality. We used GRADE to assess the certainty of evidence for our primary outcome only. MAIN RESULTS: We identified three new RCTs (480 participants). Participants were adults with congenital heart disease. Included studies varied in intervention length (90 minutes to 3 months) and follow-up (3 to 12 months), with depression assessed post-intervention and at follow-up. Risk of bias assessment identified an overall low risk of bias for the main outcome of depression. Psychological interventions (talking/counselling therapy) may reduce depression more than usual care at both three-month (mean difference (MD) -1.07, 95% confidence interval (CI) -1.84 to -0.30; P = 0.006; I2 = 0%; 2 RCTs, 156 participants; low-certainty evidence), and 12-month follow-up (MD -1.02, 95% CI -1.92 to -0.13; P = 0.02; I2 = 0%; 2 RCTs, 287 participants; low-certainty evidence). There was insufficient evidence to draw conclusions about the impact of psychological interventions on quality of life. None of the included studies reported on our other outcomes of interest. Due to the low number of studies included, we did not undertake any subgroup analyses. One study awaits classification. AUTHORS' CONCLUSIONS: Psychological interventions may reduce depression in adults with congenital heart disease compared to usual care. However, the certainty of the evidence is low. Further research is needed to establish the role of psychological interventions in this population, defining the optimal duration, method of administration, and number of sessions required to obtain the greatest benefit.

Cerebral blood flow velocity and oxygenation in neonatal aortic arch repair at two perfusion temperatures.

OBJECTIVES: (i) To monitor cerebral blood flow velocity (CBFv) throughout aortic arch repair surgery and during the recovery period. (ii) To examine the relationship between transcranial doppler ultrasound (TCD) and near-infrared spectroscopy (NIRS) during cardiac surgery. (iii) To examine CBFv in patients cooled to 20°C and 25°C. METHODS: During aortic arch repair and after surgery, measurements of TCD, NIRS, blood pH, pO2, pCO2, HCO3, lactate, Hb, haematocrit (%) and temperature (core and rectal) were recorded in 24 neonates. General linear mixed models were used to examine differences over time and between two cooling temperatures. Repeated measures correlations were used to determine the relationship between TCD and NIRS. RESULTS: CBFv changed during arch repair (main effect of time: P = 0.001). During cooling, CBFv increased by 10.0 cm/s (5.97, 17.7) compared to normothermia (P = 0.019). Once recovering in paediatric intensive care unit (PICU), CBFv had increased from the preoperative measurement by 6.2 cm/s (0.21, 13.4; P = 0.045). CBFv changes were similar between patients cooled to 20°C and 25°C (main effect of temperature: P = 0.22). Repeated measures correlations (rmcorr) identified a statistically significant but weak positive correlation between CBFv and NIRS (r = 0.25, P≤0.001). CONCLUSIONS: Our data suggested that CBFv changed throughout aortic arch repair and was higher during the cooling period. A weak relationship was found between NIRS and TCD. Overall, these findings could provide clinicians with information on how to optimise long-term cerebrovascular health.

Ventricular Septal Defect Exposure by Tricuspid Valve Chordal Detachment-A Retrospective Matched Study.

Background: Transatrial approach is the standard method in repairing ventricular septal defects (VSD) in the pediatric population. However, the tricuspid valve (TV) apparatus might obscure the inferior border of the VSD risking the adequacy of repair by leaving residual VSD or heart block. Detachment of the TV chordae has been described as an alternative technique to TV leaflet detachment. The aim of this study is to investigate the safety of such a technique. Methods: Retrospective review of patients who underwent VSD repair between 2015 and 2018. Group A (n = 25) had VSD repair with TV chordae detachment were matched for age and weight to group B (n = 25) without tricuspid chordal or leaflet detachment. Electrocardiogram (ECG) and echocardiogram at discharge and at 3 years of follow-up were reviewed to identify new ECG changes, residual VSD, and TV regurgitation. Results: Median ages in groups A and B were 6.13 (IQR 4.33-7.91) and 6.33 (4.77-7.2) months. New onset right bundle branch block (RBBB) was diagnosed at discharge in 28% (n = 7) of group A versus 56% (n = 14) in group B (P = .044), while the incidence dropped to 16% (n = 4) in group A versus 40% (n = 10) in group B (P = .059) in the 3 years follow-up ECG. Echocardiogram at discharge showed moderate tricuspid regurgitation in 16% (n = 4) in group A and 12% (n = 3) in group B (P = .867). Three years of follow-up echocardiography revealed no moderate or severe tricuspid regurgitation and no significant residual VSD in either group. Conclusion: No significant difference in operative time was observed between the two techniques. TV chordal detachment technique reduces the incidence of postoperative RBBB without increasing the incidence of TV regurgitation at discharge.

Are there foetal extracellular vesicles in maternal blood? Prospects for diagnostic biomarker discovery.

Prenatal diagnosis of congenital disease improves clinical outcomes; however, as many as 50% of congenital heart disease cases are missed by current ultrasound screening methods. This indicates a need for improved screening technology. Extracellular vesicles (EVs) have attracted enormous interest in recent years for their potential in diagnostics. EVs mediate endocrine signalling in health and disease and are known to regulate aspects of embryonic development. Here, we critically evaluate recent evidence suggesting that EVs released from the foetus are able to cross the placenta and enter the maternal circulation. Furthermore, EVs from the mother appear to be transported in the reverse direction, whilst the placenta itself acts as a source of EVs. Experimental work utilising rodent models employing either transgenically encoded reporters or application of fluorescent tracking dyes provide convincing evidence of foetal-maternal crosstalk. This is supported by clinical data demonstrating expression of placental-origin EVs in maternal blood, as well as limited evidence for the presence of foetal-origin EVs. Together, this work raises the possibility that foetal EVs present in maternal blood could be used for the diagnosis of congenital disease. We discuss the challenges faced by researchers in translating these basic science findings into a clinical non-invasive prenatal test.

Facilitators and barriers of physical activity participation in children with a single ventricle physiology: a mixed-methods study.

BACKGROUND: The present study focuses on assessing the physical activity level of children with Fontan circulation for Hypoplastic Left Heart Syndrome and identifying potential barriers and facilitators toward their participation in physical activity. PATIENTS AND METHODS: Seven children aged 5-16 years (mean (SD) 8.8 (3.7) years) with a Fontan procedure for hypoplastic left heart syndrome, their parents (n = 7), and siblings (n = 1) were recruited. Data were collected using a mixed-methods approach: (i) children wore an activity monitor for 7 days to record physical activity, with sedentary time and level of activity calculated from accelerometer data; (ii) children completed a bespoke questionnaire recording limitations in physical activity; (iii) parents completed a semi-structured interview discussing perceptions about their child's physical activity participation. Qualitative data were analysed using thematic analysis. RESULTS: Activity monitors data recorded highly active children with a mean (SD) of 153(36) minutes/day spent in moderate-to-vigorous physical activity. Time spent in sedentary behaviour was also high (57.5% of total accelerometer wearing-time). Four key themes relating to parental perceptions of physical activity were identified: (i) A new lease of life -post-Fontan; (ii) Setting limits - managing limitations; (iii) The wider world - how others set limits; and (iv) "I fear the future" - parental concerns. CONCLUSION: Following completion of the Fontan circulation, children engaged in higher levels of physical activity in comparison to the national average. However, more than half their time was spent in sedentary behaviour. Fears and anxiety from parents and teachers may act as a barrier toward physical activity participation.

Effectiveness and Safety of Antithrombotic Medication in Patients With Atrial Fibrillation and Intracranial Hemorrhage: Systematic Review and Meta-Analysis.

BACKGROUND: For patients with atrial fibrillation who survive an intracranial hemorrhage (ICrH), the decision to offer oral anticoagulation (OAC) is challenging and necessitates balancing risk of thromboembolic events with risk of recurrent ICrH. METHODS: This systematic review assesses the effectiveness and safety of OAC and/or antiplatelets in patients with atrial fibrillation with nontraumatic ICrH. Bibliographic databases CENTRAL, MEDLINE, EMBASE, and CINAHL were searched. Articles on adults with atrial fibrillation with spontaneous ICrH (intracerebral, subdural, and subarachnoid), receiving antithrombotic therapy for stroke prevention were eligible for inclusion. RESULTS: Twenty articles (50 470 participants) included 2 randomized controlled trials (n=304)' 8 observational studies, 8 cohort studies, and 2 studies that meta-analyzed individual-level data from observational studies. OAC therapy was associated with a significant reduction in thromboembolic events (summary relative risk [sRR], 0.51 [95% CI, 0.30-0.86], heterogeneity I2=2%; P=0.39, n=5 studies) and all-cause mortality (sRR, 0.52 [95% CI, 0.38-0.71], heterogeneity I2=0; P=0.44, n=3 studies). OAC therapy was not associated with an increased risk of recurrent ICrH (sRR, 1.44 [95% CI, 0.38-5.46], heterogeneity I2=70%, P=0.02, n=5 studies). Nonvitamin K antagonist OACs were more effective at reducing the risk of thromboembolic events (sRR, 0.65 [95% CI, 0.44-0.97], heterogeneity I2=72%, P=0.03, n=3 studies) and were associated with a lower risk of recurrent ICrH (sRR, 0.52 [95% CI, 0.40-0.67], heterogeneity I2=0%, P=0.43, n=3 studies) than warfarin. CONCLUSIONS: In nontraumatic ICrH survivors with atrial fibrillation, OAC therapy is associated with a reduced risk of thromboembolic events and all-cause mortality without significantly increasing risk of recurrent ICrH. This finding is primarily based on observational data, and further larger randomized controlled trials are needed to corroborate or refute these findings.

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.

Managing Uncertainty: Physicians' Decision Making for Stroke Prevention for Patients with Atrial Fibrillation and Intracerebral Hemorrhage.

BACKGROUND: Stroke prevention in patients with atrial fibrillation (AF) post-intracerebral hemorrhage (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. METHODS: Qualitative study, utilizing semistructured interviews and analyzed using Framework analysis. RESULTS: Twenty physicians from five European countries (Austria, France, Germany, Spain, United Kingdom) participated. The overarching 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 subthemes were identified under the umbrella theme: (1) "Computing the risks," captured the challenge of balancing the risks of ischemic stroke with the risk of recurrent ICH in a complex patient population; (2) "Patient factors" highlighted the influence that physician-perceived 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 were patient comorbidities, functional status, and patient willingness to engage with OAC 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.

A qualitative study exploring risk perception in congenital cardiac surgery: the perspective of UK surgeons.

INTRODUCTION: Managing risk is central to clinical care, yet most research focuses on patient perception, as opposed to how risk is enacted within the clinical setting by healthcare professionals. AIM: To explore how surgical risk is perceived, encountered, and managed by congenital cardiac surgeons. METHODS: Semi-structured interviews were conducted with 20 congenital cardiac surgeons representing every unit across England and Wales. All interviews were transcribed verbatim, with analysis based on the constant comparative approach. FINDINGS: Three themes were identified, reflecting the interactions between personal, institutional, and political context in which risk is encountered and managed. First, "communicating risk" highlights the complexity and variability in methods employed by surgeons to balance legal/moral obligations with parental need and expectations. Universally, surgeons described the need for flexibility in their approach in order to meet the needs of individual patients. Second, "scrutiny and accountability" captures the spectrum of opinion arising from the binary nature of the outcomes collated and the way in which they are perceived to be interpreted. Third, "nature of the job" highlights the personal and professional implications of conveying and managing risk and the impact of recent policy changes on the way this is enacted. CONCLUSION: Variations in approaches to communicating risk demonstrate a lack of consensus, compounded by insufficient evidence to determine or monitor a "best-care" approach. With current surgical outcomes suggesting little room for increasing survival rates, future care needs should shift to the "soft skills" in order to continue to drive improvements in parental and patient experience.

Parents' decision-making following diagnosis of a severe congenital anomaly in pregnancy: Practical, theoretical and ethical tensions.

Patient involvement, in the form of shared decision-making, is advocated within healthcare. This is informed by the principlist account of patient autonomy that prioritises informed understanding, and decision-making free from coercion. This arguably over-simplifies the role of the social, whilst overlooking the role of culture and context in medical decision-making. Clinicians encourage patients to demonstrably make decisions in the principlist 'style' that fit with their understandings of ethically 'correct' ways to support patient decision-making. However, this expected 'style' is often not achieved in practice. In this article, we use empirical data from a qualitative study exploring parental decision-making following diagnosis or suspicion of a severe congenital anomaly in pregnancy. Our study was based in four fetal medicine clinics in England, comprising semi-structured interviews with 38 parents whose pregnancy was affected by a severe congenital anomaly, 18 interviews with fetal medicine clinicians, and audio-recordings of 48 consultations. Examination of the dynamics at play within different approaches to decision-making highlights how the idealised concepts proposed in theory fail to capture real-life experiences of medical decision-making. The influence of the patient-clinician relationship on decisions is brought to the fore, highlighting the influence of power dynamics in implicitly and explicitly influencing patient decisions, and the need to better address this in policy and practice.

Role of Blood Pressure in Mediating Carotid Artery Dilation in Response to Sympathetic Stimulation in Healthy, Middle-Aged Individuals.

OBJECTIVES: Carotid artery diameter responses to sympathetic stimulation, i.e., carotid artery reactivity (CAR), represent a novel test of vascular health and relates to cardiovascular disease (CVD)/risk. This study aims to understand the relationship between the increase in blood pressure and carotid artery diameter response during the CAR-test in healthy, middle-aged men. METHODS: Sample consisted of 40 normotensive men (aged 31-59 years) with no history of CVD of currently taking medication. Noninvasive ultrasound was used to measure carotid artery diameter during the cold pressor test (CPT), with CAR% being calculated as the relative change from baseline (%). Mean arterial pressure (MAP) was measured with beat-to-beat blood pressure recording. RESULTS: CAR% was 4.4 ± 5.4%, peaking at 92 ± 43 seconds. MAP increased from 88 ± 9 mmHg to 110 ± 15 mmHg, peaked at 112 ± 38 seconds, which was significantly later than the diameter peak (P = 0.04). The correlation between resting MAP and CAR% was weak (r = 0.209 P = 0.197). Tertiles based on resting MAP or MAP-increase revealed no significant differences between groups in subject characteristics including age, body mass index, or CAR% (all P > 0.05). Subgroup analysis of individuals with carotid constriction (n = 6) vs. dilation (n = 34), revealed no significant difference in resting MAP or increase in MAP (P = 0.209 and 0.272, respectively). CONCLUSION: Our data suggest that the characteristic increase in MAP during the CPT does not mediate carotid artery vasomotion.

Congenital Cardiac Surgery and Parental Perception of Risk: A Quantitative Analysis.

INTRODUCTION: Interpretation of risk by parents of children undergoing congenital cardiac surgery is poorly documented. The available evidence highlights a dichotomy where clinicians suggest parents may not grasp the complexity and risk associated with procedures, while some parents suggest risk is unnecessarily overemphasized. AIM: To quantify how risk is perceived by parents. METHODS: One hundred six parents of children undergoing cardiac surgery were recruited and completed a Likert-type scale from 1 (perceived low risk) to 6 (perceived high risk), at 5 points: arrival at preadmission, post discussion with anethetist/surgeon, day of surgery, discharge from intensive care, and at outpatient follow-up. The surgical sample was stratified according to Risk Adjustment in Congenital Heart Surgery level. ANALYSIS: Data were analyzed using Wilcoxon rank tests for differences in distributions of scores and Krippendorff α to examine the level of agreement. RESULTS: Median parental risk scores varied over time, with no consistent risk scores observed. Maternal scores were consistently higher than paternal scores at every time point (P < .001). Postoperative complications resulted in a persistent rise in risk perception at follow-up (P < .001). Analysis of parental risk scores and objective measures of surgical risk highlighted poor agreement that was particularly marked at the extremes of risk. CONCLUSIONS: Parents perceived higher risk scores than those reported by the clinical team. Mothers reported statistically significantly higher scores than their partners, highlighting potential tensions. In addition, the changing perception of risk over time emphasizes the need for flexible levels of support and information as parents navigate uncertainty.

Congenital cardiac surgery and parental perception of risk: a qualitative study.

INTRODUCTION: The way risk is interpreted by parents of children undergoing congenital cardiac surgery is poorly documented. Literature suggests clinicians have concerns that parents may not understand the complexity of procedures. Conversely, some parents perceive an unnecessary over-emphasis of risks. AIM: To explore how risk is encountered by parents of children who are undergoing cardiac surgery, in order to deliver effective and compassionate care. METHODS: A qualitative approach was adopted. Interviews were undertaken with 18 parents (mothers n = 10; fathers n = 8). Recordings were transcribed verbatim and analysed using a constant comparative-based approach. FINDINGS: Three themes emerged from the data: the nature of risk, reflecting the complexity of parental perception of risk and the influence of the doctor-parent relationship; presenting risk, highlighting the way in which risk is presented to and interpreted by parents; and risk and responsibility, examining the way in which parents engaged with risk and the impact of this on their relationship. CONCLUSIONS: The way in which risk is perceived by parents is complex and multi-factorial. The doctor-parent relationship is key to parental engagement. However, parents manage risk and uncertainty through a number of mechanisms, including those perceived as being not rational. This can cause tension, particularly when required to engage in informed decision-making.

An exploration of student nurses' views of oral health care in the hospitalised child: A qualitative study.

Hospitalization impacts negatively on oral health, where underlying medical conditions and interventions such as oxygen therapy and nil-by-mouth status increase susceptibility to complications. However, evidence suggests it is often overlooked, or viewed as low priority by nurses. The rationale for these beliefs is unclear. This study provides an exploration of these beliefs, focusing specifically on their development, as reflected in the experiences of adult and paediatric student nurses. Three focus groups were conducted, and thematic analysis applied. Whilst students theoretically understood the value of oral health care, in hospital it was overlooked, with other 'clinical' aspects of care valued more highly. 'Hierarchy of need' emerged as the over-arching theme. Interrelated sub-themes included: 'practice/theory mismatch,' highlighting lack of education and adequacy of exposure to oral health care encounters; 'resources,' where infrastructure was lacking; and 'disempowerment,' where students felt powerless to act. Exposure to oral health care encounters were less frequent in the paediatric setting, risking disempowerment of parents as well as students. These findings highlight the need to raise the profile of oral health care, both theoretically and practically, engendering a culture that embeds mouth care unobtrusively into day-to-day nursing practice, improving health care outcomes for those in our care.

Diagnosis of a severe congenital anomaly: A qualitative analysis of parental decision making and the implications for healthcare encounters.

OBJECTIVE: To explore parental decision making following diagnosis of a severe congenital anomaly, and implications for healthcare encounters. DESIGN: Qualitative semi-structured interviews with 38 parents-to-be were collated and triangulated with data generated from consultation recordings. ANALYSIS: Data were analysed using a constant comparative-based approach. SETTING: Recruitment was undertaken across four fetal medicine sites in two tertiary referral trusts. PARTICIPANTS: Parents-to-be whose pregnancy was suspected or diagnosed as being affected by a severe congenital anomaly. This sample was purposive to include known factors affecting the decision to terminate or continue the affected pregnancy. FINDINGS: In trying to make a decision about how to proceed with their pregnancy, parents-to-be typically had to work hard to negotiate multiple uncertainties around the diagnosis and prognosis of the suspected anomaly. This was influenced by parents' capacity to cope with uncertainty and the way in which uncertainty was managed by the clinical team. This negotiation of uncertainty was enacted within a fluid, nonlinear three-phase process: "information seeking," reflecting the way parents-to-be face the uncertainty associated with a fetal diagnosis and associated prognosis; "implications," where consideration is given to future consequences of the decision; and "decision making," which reflects the way in which the decision is made (head- or heart-led). Spectrums of responses were apparent within each phase. CONCLUSIONS: This study provides important insights into how parents-to-be make decisions following diagnosis or suspicion of a severe congenital anomaly. The impact of these on healthcare encounters is discussed, alongside recommendations for clinical practice.

Clinicians' perspectives of parental decision-making following diagnosis of a severe congenital anomaly: a qualitative study.

OBJECTIVE: To explore clinicians' perspectives on supporting parents' decision-making following diagnosis of a severe congenital anomaly, and how this is shaped by current policy. METHODS: This paper reports data collated as part of a larger project examining parents' decision-making following antenatal diagnosis. The focus of this paper is the data arising from semistructured interviews conducted with 18 clinicians, with findings further supported by data generated from consultations between clinicians and parents. All interviews and consultations were audio-recorded and transcribed verbatim, with analysis based on the constant comparative approach. RESULTS: Three key themes emerged which together shape the practice of clinicians working in this area: first, the law governing termination of pregnancy (TOP) and how clinicians believe this influences the context in which decisions about whether to terminate or continue an affected pregnancy are made; second, approaches to the management of cases seen as particularly challenging; and third, how clinicians understand their role when working with parents. These themes combine to create a strong desire on the part of clinicians for parents to engage in a particular 'rational' form of decision-making and to be able to demonstrate the enactment of this. This is seen as important in order to ensure the 'right' decision has been reached and, particularly when the decision is to terminate, will withstand possible scrutiny. CONCLUSIONS: The policy context in which these decisions are made strongly shapes how clinicians practise and what they want to see from the parents with whom they work. The ways in which they seek to overcome the difficulties in interpreting the law may result in variations in the offer of late TOP, both between and within units. This may inadvertently affect the options available to women least able to engage in this idealised form of decision-making.

Care provision during termination of pregnancy following diagnosis of a severe congenital anomaly - A qualitative study of what is important to parents.

OBJECTIVE: to understand the experiences of women and their partners following the decision to terminate a pregnancy affected by a severe congenital anomaly DESIGN: qualitative semi-structured interviews with a purposive sample of women and their partners who underwent a termination of pregnancy following diagnosis of a severe congenital anomaly. SETTING: women referred to four fetal medicine centres across two hospital trusts. ANALYSIS: data analysis was based on the constant comparative approach. FINDINGS: the over-arching theme emerging from the data was that of 'falling through the gap', where the care received did not adequately meet the needs of women and their partners. This was particularly salient at three specific points in the care pathway: enacting the decision to have a termination of pregnancy and subsequent initiation of the process; care during labour and birth, where parents describe being caught in 'no-man's land' between the antenatal and postnatal settings; and post-birth, where parents made sense of and came to terms with their decision. CONCLUSIONS: the diagnosis of a severe congenital anomaly and the subsequent pathway that parents face is a traumatic event. Responsibility for the decision to terminate the pregnancy intensifies emotions and adds to the complexity of caring for this group. These findings point to the need for a specific care pathway for parents undergoing this difficult experience. Recommendations include the need for a greater understanding of the views of midwives caring for these parents, review of specific training needs, and examination of processes to better support both parents.