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.
ObjectiveTo explore parental decision making following diagnosis of a severe congenital anomaly, and implications for healthcare encounters.DesignQualitative semi‐structured interviews with 38 parents‐to‐be were collated and triangulated with data generated from consultation recordings.AnalysisData were analysed using a constant comparative‐based approach.SettingRecruitment was undertaken across four fetal medicine sites in two tertiary referral trusts.ParticipantsParents‐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.FindingsIn 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.ConclusionsThis 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.
ObjectiveTo explore clinicians’ perspectives on supporting parents’ decision-making following diagnosis of a severe congenital anomaly, and how this is shaped by current policy.MethodsThis 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.ResultsThree 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.ConclusionsThe 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.
Background/Aims Individuals from South Asian backgrounds are at greater risk of developing coronary heart disease. Cardiac rehabilitation reduces the risk of future cardiac events, yet uptake is low among South Asian populations. This study explored South Asian patients' understanding and experiences of cardiac rehabilitation. Methods This qualitative, semi-structured study identified a purposeful sample of 36 eligible patients, of whom six participated in an interview that explored their experiences and perceptions of cardiac rehabilitation. Data were analysed using inductive analysis. Results Three themes were identified: starting the conversation; expectation vs reality; and meeting patient needs. Patients perceived cardiac rehabilitation as additional support rather than a fundamental part of care. Moreover, they considered the content of cardiac rehabilitation programmes to lack cultural sensitivity, which influenced both attendance and perceived relevance. Conclusions: Nurses must promote cardiac rehabilitation during the acute phase of recovery, while considering South Asian patients' beliefs, perceptions and cultural acceptance of cardiac rehabilitation. Invitations to attend and cardiac rehabilitation delivery must be personalised, accounting for cultural influences on lifestyle.
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.
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