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This paper examines the challenges facing English flood risk management (FRM) policy and practice when considering fair decision-making processes and outcomes at a range of spatial scales. It is recognised that flooding is not fair per se: the inherent natural spatial inequality of flood frequency and extent, plus the legacy of differential system interventions, being the cause. But, drawing on the three social justice models – procedural equality, Rawls’ maximin rule and maximum utility – the authors examine the fairness principles currently employed in FRM decision-making. This is achieved, firstly, in relation to the distribution of taxpayer's money for FRM at the national, regional and local levels and, secondly, for non-structural strategies – most notably those of insurance, flood warnings and awareness raising, land use control, home owner adaptation and emergency management. A case study of the Lower Thames catchment illustrates the challenges facing decision-makers in ‘real life’: how those strategies which appear to be most technically and economically effective fall far short of being fair from either a vulnerability or equality perspective. The paper concludes that if we are to manage flood risk somewhat more fairly then a move in the direction of government funding of nationally consistent non-structural strategies, in conjunction with lower investment decision thresholds for other local-level FRM options, appears to offer a greater contribution to equality and vulnerability-based social justice principles than the status quo. [ABSTRACT FROM AUTHOR]

Objectives: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life. Methods: We conducted semi‐structured interviews with a sample of family carers enroled into a 6‐month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self‐reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021–July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results. Results: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity. Conclusions: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning. Patient or Public Contribution: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis. [ABSTRACT FROM AUTHOR]

involving the public in decision-making has become a bureaucratic pre-occupation for every health agency in the UK. In this paper we offer an innovative approach for local participation in health decision-making through the development of a `grounded' citizens' jury. We describe the process of one such jury commissioned by a Primary Care Group in the north-west of England, which was located in an area suffering intractable health inequalities. Twelve local people aged between 17 and 70 were recruited to come together for a week to hear evidence, ask questions and debate what they felt would improve the health and well-being of people living in the area. The jury process acted effectively as a grass-roots health needs assessment and amongst other outcomes, resulted in the setting up of a community health centre run by a board consisting of members of the community (including two jurors) together with local agencies. The methodology described here contrasts with that practiced by what we term `the consultation industry', which is primarily interested in the use of fixed models to generate the public view as a standardized output, a product, developed to serve the needs of an established policy process, with little interest in effecting change. We outline four principles underpinning our approach: deliberation, integration, sustainability and accountability. We argue that citizens' juries and other consultation initiatives need to be reclaimed from that which merely serves the policy process and become `grounded', a tool for activism, in which local people are agents in the development of policies affecting their lives. [ABSTRACT FROM AUTHOR]

Introduction: Using co‐design processes, we aimed to develop an evidence‐based decision guide for family carers and hospital professionals to support decision‐making about eating and drinking for hospital patients with severe dementia. Methods: Following a systematic review, we interviewed people with mild dementia, family carers and hospital professionals in England. We then held co‐design workshops with family carers and hospital professionals. In parallel with the workshops, we used a matrix to synthesize data from all studies and to develop a decision guide prototype. The prototype was iteratively refined through further co‐design workshops and discussions among researchers and Patient and Public Involvement (PPI) representatives. We conducted user testing for final feedback and to finalize the decision guide. Results: Most participants acknowledged the limited benefits of tube feeding and would not use or want it for someone with severe dementia. However, they found decision‐making processes and communication about nutrition and hydration were emotionally demanding and poorly supported in acute hospitals. The co‐design groups developed the aims of the decision guide to support conversations and shared decision‐making processes in acute hospitals, and help people reach evidence‐based decisions. It was designed to clarify decision‐making stages, provide information and elicit the values/preferences of everyone involved. It encouraged person‐centred care, best‐interests decision‐making and multidisciplinary team working. From user testing, family carers and hospital professionals thought the decision guide could help initiate conversations and inform decisions. The final decision guide was disseminated and is being used in clinical practice in England. Conclusion: We used rigorous and transparent processes to co‐design the decision guide with everyone involved. The decision guide may facilitate conversations about nutrition and hydration and help people reach shared decisions that meet the needs and preferences of people with severe dementia. Future evaluation is required to test its real‐world impacts. Patient or Public Contribution: People with mild dementia, family carers and hospital professionals contributed to the design of the decision guide through the interviews and co‐design workshops. PPI members helped design study procedures and materials and prepare this manuscript. [ABSTRACT FROM AUTHOR]

Women with learning disabilities are less likely to breastfeed than other women. They may find it hard to understand or learn feeding techniques or know that they have infant feeding choices. This population may be supported during their pregnancies by a range of professionals with differing priorities and responsibilities towards both the mother and the baby. This puts considerable pressure on health care professionals including, but not limited to, midwives, infant feeding specialists, health visitors and learning disability nurses. Those who support women with learning disabilities through their journey into motherhood have a responsibility to ensure the women in their care have the information they need to make decisions about a range of issues, including infant feeding. In the absence of dedicated lactation consultants, this is one of many issues to be discussed within time‐limited appointments. Little is known about the experience of supporting women with learning disabilities to make infant feeding decisions from the point of view of health professionals. Using a qualitative descriptive research design, we conducted online, semistructured interviews with seven UK health professionals about their experience of supporting women with learning disabilities in infant feeding. Thematic analysis identified three themes: the importance of health professionals' having unconditional, positive regard; the need for an individualised approach to supporting women to make infant‐feeding decisions; and being part of the support network. This suggests that women with learning disabilities can make and put into practice infant feeding decisions if they have access to the right support at the right time. Key messages: With the right support at the right time, women with learning disabilities can make infant feeding decisions and successfully feed their babies.Infant feeding options should be discussed early in the pregnancy, with repetition and the use of accessible resources such as videos to support decision‐making.Breastfeeding should be considered a viable option for all women.Health professionals need to be flexible in their approach to supporting infant feeding decision‐making, working as part of the woman's circle of support.Accessible resources can be helpful in supporting infant feeding decision‐making, but one size does not fit all. [ABSTRACT FROM AUTHOR]

Objective: Blood tests are commonly used in primary care as a tool to aid diagnosis, and to offer reassurance and validation for patients. If doctors and patients do not have a shared understanding of the reasons for testing and the meaning of results, these aims may not be fulfilled. Shared decision‐making is widely advocated; yet, most research focusses on treatment decisions rather than diagnostic decisions. The aim of this study was to explore communication and decision‐making around diagnostic blood tests in primary care. Methods: Qualitative interviews were undertaken with patients and clinicians in UK primary care. Patients were interviewed at the time of blood testing, with a follow‐up interview after they received test results. Interviews with clinicians who requested the tests provided paired data to compare clinicians' and patients' expectations, experiences and understandings of tests. Interviews were analysed thematically using inductive and deductive coding. Results: A total of 80 interviews with 28 patients and 19 doctors were completed. We identified a mismatch in expectations and understanding of tests, which led to downstream consequences including frustration, anxiety and uncertainty for patients. There was no evidence of shared decision‐making in consultations preceding the decision to test. Doctors adopted a paternalistic approach, believing that they were protecting patients from anxiety. Conclusion: Patients were not able to develop informed preferences and did not perceive that choice is possible in decisions about testing, because they did not have sufficient information and a shared understanding of tests. A lack of shared understanding at the point of decision‐making led to downstream consequences when test results did not fulfil patients' expectations. Although shared decision‐making is recommended as best practice, it does not reflect the reality of doctors' and patients' accounts of testing; a broader model of shared understanding seems to be more relevant to the complexity of primary care diagnosis. Patient or Public Contribution: A patient and public involvement group comprising five participants with lived experience of blood testing in primary care met regularly during the study. They contributed to the development of the research objectives, planning recruitment methods, reviewing patient information leaflets and topic guides and also contributed to discussion of emerging themes at an early stage in the analysis process. [ABSTRACT FROM AUTHOR]

Aim: Early warning scores are commonly used in hospital settings, but little is known about their use in care homes. This study aimed to evaluate the impacts of National Early Warning Scores alongside other measures in this setting. Design: Convergent parallel design. Methods: Quantitative data from 276 care home residents from four care homes were used to analyse the relationship between National Early Warning Scores score, resident outcome and functional daily living (Barthel ADL (Barthel Index for Activities of Daily Living)) and Rockwood (frailty). Interviews with care home staff (N = 13) and care practitioners (N = 4) were used to provide qualitative data. Results: A statistically significant link between National Early Warning Scores (p =.000) and Barthel ADL (p =.013) score and hospital admissions was found, while links with Rockwood were insignificant (p =.551). Care home staff reported many benefits of National Early Warning Scores, including improved communication, improved decision‐making and role empowerment. Although useful, due to the complexity of the resident population's existing health conditions, National Early Warning Scores alone could not act as a diagnostic tool. [ABSTRACT FROM AUTHOR]

Background: Studies have identified young adults as more likely to use emergency departments for 'clinically unnecessary' problems, with limited similar evidence for emergency ambulance use. Media portrayals depict young adults as motivated by 'convenience', but little research has explored the reasons for their help‐seeking behaviour. Methods: Qualitative interviews with 16 young adults (18‐30) considered by clinicians to have made unnecessary use of emergency ambulance, emergency department or an urgent GP appointment. Data analysis was informed by interpretive phenomenological analysis. Findings: A number of interrelated factors contributed to participants' decisions. They were anxious about the seriousness of their symptoms, sometimes exacerbated by reduced coping capacity due to poor mental health or life stresses. They looked to others to facilitate their decision making, who sometimes encouraged urgent contact. They wanted to avoid impact on existing day‐to‐day commitments including work or study. They had strong views about different health services, sometimes based on frustration with lack of resolution of on‐going health problems. Convenience was not identified as a significant factor, although some actions could be interpreted in this light if the context was not considered. Conclusions: Young adults make 'clinically unnecessary' use of urgent and emergency care for more than convenience. Their decisions need to be understood in relation to the complexity of their experience, including lack of confidence in making health‐related decisions, lowered coping capacity and concern to maintain normal daily life. [ABSTRACT FROM AUTHOR]

Background: Hypertension is mainly managed in primary care. Shared decision making is widely recommended as an approach to treatment decision making. However, no studies have investigated; in detail, what happens during primary care consultations for hypertension. Aim: To understand patients' and clinicians' experience of shared decision making for hypertension in primary care, in order to propose how it might be better supported. Design: Longitudinal qualitative study. Setting: Five general practices in south‐west England. Method: Interviews with a purposive sample of patients with hypertension, and with the health‐care practitioners they consulted, along with observations of clinical consultations, for up to 6 appointments. Interviews and consultations were audio‐recorded and observational field notes taken. Data were analysed thematically. Results: Forty‐six interviews and 18 consultations were observed, with 11 patients and nine health‐care practitioners (five GPs, one pharmacist and three nurses). Little shared decision making was described by participants or observed. Often patients' understanding of their hypertension was limited, and they were not aware there were treatment choices. Consultations provided few opportunities for patients and clinicians to reach a shared understanding of their treatment choices. Opportunities for patients to engage in choices were limited by structured consultations and the distribution of decisions across consultations. Conclusion: For shared decision making to be better supported, consultations need to provide opportunities for patients to learn about their condition, to understand that there are treatment choices, and to discuss these choices with clinicians. Patient or Public Contribution: A patient group contributed to the design of this study. [ABSTRACT FROM AUTHOR]

Background Older people are sometimes challenged in maintaining a healthy diet but, because of age and disadvantage, are also more vulnerable to the adverse health consequences of poor nutrition. It has been claimed that older adults have low levels of health literacy regarding food and struggle to discern which foods are healthy from the vast range available in developed counties. However, nutrition and eating behaviour are modifiable risk factors for health in old age and health benefits can accrue from promoting healthy eating later in life. In order to achieve these health benefits, it is necessary to understand more about the capabilities and vulnerabilities of older people in terms of acquiring and maintaining a healthy diet. Objective To understand the potential for issues around food vulnerability to arise in that group and to characterize that vulnerability, if present. Design Narrative interviews were conducted to collect the data. An interpretative thematic approach to analysis was utilized. Participants Twenty older, bereaved men from two communities in the North of England. Findings Five overarching themes were identified: financial security, social networks, cooking skills, food and routine and single servings. Discussion Our findings suggest that some older men experience cumulative benefit from resources at their disposal, which contributes towards their capabilities to avoid food vulnerability. [ABSTRACT FROM AUTHOR]

The article presents the research that investigates the implications of patients' varied information requirements and socio-demographic attributes on their choice of healthcare institutions in Great Britain. The topics discussed include the factors that influence patients' choice of hospitals and the reasons why some patients decided to switch hospitals and healthcare providers.

Background: Uptake of colorectal cancer screening programmes needs to be improved or at least maintained in order to achieve projected reductions in mortality and morbidity. Understanding the origins of non‐participation in screening is therefore important. Objective: To explore the beliefs and experiences of individuals who had not responded either to their screening invitation or reminder. Design: A qualitative study using in‐depth interviews with non‐participants from England's population‐based colorectal cancer screening programme. Data collection and analysis were carried out using a grounded theory approach, with an emphasis on the constant comparison method, and continued until saturation (27 interviews). Findings: The interviews provided an in‐depth understanding of a range of reasons and circumstances surrounding non‐participation in screening, including contextual and environmental influences as well as factors specific to the screening test. Non‐participation in screening was not necessarily associated with negative attitudes towards screening or a decision to not return a kit. Reasons for non‐participation in screening included not feeling that participation is personally necessary, avoiding or delaying decision making, and having some degree of intention to take part but failing to do so because of practicalities, conflicting priorities or external circumstances. Beliefs, awareness and intention change over time. Discussion and conclusions: A range of approaches may be required to improve screening uptake. Some non‐participants may already have a degree of intention to take part in screening in the future, and this group may be more responsive to interventions based on professional endorsement, repeat invitations, reminders and aids to making the test more practical. [ABSTRACT FROM AUTHOR]

Background Personalization - most often understood in terms of granting patients greater opportunity to participate in, and make choices about, the services they receive - has become a key principle guiding reform of the English NHS. Objective This study sets out to explore the relationship between two senses of the term 'personal' within the context of personalization. Firstly, much of the policy literature equates a 'personal' service with one that is responsive to the choices of individual patients. Secondly, the term 'personal' can be thought to refer to the intimate relationships between patients and medical professionals that have typified traditional models of good practice. Methodology and Discussion I combine a review of the relevant academic and policy literature on personalization with a process of conceptual analysis to uncover three arguments, which suggest that personalization based on choice may adversely affect standards of care by eroding the qualities of intimacy at the heart of the care process. Thus, an unintended consequence of the drive for personalization may be the creation of an NHS that is, in an important sense, less personal than it once was. Conclusion Whilst personalization may deliver many potential benefits, the tension between promoting patient choice and retaining intimate professional-patient relationships ought to be taken seriously. Thus, the task of promoting choice whilst retaining intimacy represents a key policy challenge for advocates of personalization. [ABSTRACT FROM AUTHOR]

Farmers have to make key decisions, such as which crops to plant or whether to prepare the soil, before knowing how much water they will get. They face losses if they make costly decisions but do not receive water, and they may forego profits if they receive water without being prepared. We consider the coordination of farmers’ decisions, such as which crops to plant or whether to prepare the soil when farmers must divide an uncertain water supply. We compare ex-ante queues (pre-decision) to an ex-post spot market (post-decision & post-rain) in experiments in rural Brazil and a university in England. Queues have greater coordination success than does the spot market. [ABSTRACT FROM PUBLISHER]

Context: Performance measures are increasingly widely used in health care and have an important role in quality. However, field studies of what organizations are doing when they collect and report performance measures are rare. An opportunity for such a study was presented by a patient safety program requiring intensive care units (ICUs) in England to submit monthly data on central venous catheter bloodstream infections (CVC-BSIs). Methods: We conducted an ethnographic study involving ∼855 hours of observational fieldwork and 93 interviews in 17 ICUs plus 29 telephone interviews. Findings: Variability was evident within and between ICUs in how they applied inclusion and exclusion criteria for the program, the data collection systems they established, practices in sending blood samples for analysis, microbiological support and laboratory techniques, and procedures for collecting and compiling data on possible infections. Those making decisions about what to report were not making decisions about the same things, nor were they making decisions in the same way. Rather than providing objective and clear criteria, the definitions for classifying infections used were seen as subjective, messy, and admitting the possibility of unfairness. Reported infection rates reflected localized interpretations rather than a standardized dataset across all ICUs. Variability arose not because of wily workers deliberately concealing, obscuring, or deceiving but because counting was as much a social practice as a technical practice. Conclusions: Rather than objective measures of incidence, differences in reported infection rates may reflect, at least to some extent, underlying social practices in data collection and reporting and variations in clinical practice. The variability we identified was largely artless rather than artful: currently dominant assumptions of gaming as responses to performance measures do not properly account for how categories and classifications operate in the pragmatic conduct of health care. These findings have important implications for assumptions about what can be achieved in infection reduction and quality improvement strategies. [ABSTRACT FROM AUTHOR]

Background Giving children and young people information about genetic conditions and associated risk has been shown to be important to their identity, coping and decision making. Parents, however, find talking to their children difficult, and support from health professionals is often not available to them. Objective To explore the role of support groups in family coping, and in assisting parents' communication about risk with children in families affected by an inherited genetic condition. Methods Semi-structured interviews analysed using grounded theory and informed by models focusing on aspects of family communication. Participants Affected and unaffected children and their parents, from families affected by one of six genetic conditions, that represent different patterns of inheritance, and variations in age of onset, life expectancy and impact on families. Results Parents often sought support they did not receive elsewhere from support groups. They identified benefits, but also potential disadvantages to this involvement. These related to the specific condition and also whether groups were run solely by parents or had professional input. Support groups rarely helped directly with family communication, but attendance often stimulated family discussion, and they provided information that improved parents' confidence in discussing the condition. Conclusions Support groups should be seen only as additional to the support offered by health and social care professionals. An increased understanding of the role of support groups in assisting families with genetic conditions has been highlighted, but further work is needed to explore more fully how this may be made more sustainable and far-reaching. [ABSTRACT FROM AUTHOR]

Background Women with one previous caesarean section must decide which mode of delivery they would prefer in their next pregnancy. This involves a choice between attempted vaginal birth and elective caesarean section. Objective To explore women's mode of delivery preferences and the values placed on the outcomes of decision making. Greater insight into these issues could benefit both clinical care and future research. Design Observational study using longitudinal data collected within a randomized controlled trial. Setting and Participants Seven hundred and forty-two women with one previous caesarean section recruited at four antenatal clinics in South West England and Scotland. Main outcome measures Mode of delivery preference recorded at 19 and 37 weeks' gestation and visual analogue scale ratings of health and delivery outcomes. Results Comparison of mid and late pregnancy preferences and actual mode of delivery shows that 57% of women hold the same mode of delivery preferences at both times and 65% of women actually have the birth they prefer. The visual analogue scale ratings show variation in the way women value the outcomes of the decision. Discussion and Conclusions Understanding the way women's mode of delivery preferences change, how these relate to actual mode of delivery and how women value the outcomes of their decision will be beneficial to health professionals who wish to support women both during pregnancy and after birth. In addition, the visual analogue scale ratings provide evidence that may improve the development of population-level and economic models of decision making. [ABSTRACT FROM AUTHOR]

People with anorexia nervosa struggle with questions of authenticity. More attention should be paid this concept—both how patients think about it, and how clinicians should think about it. INSET: The Study. [ABSTRACT FROM AUTHOR]

This article will consider the highly charged questions raised by two major sets of law reforms in England and Wales, the Mental Capacity Act 2005 and the Mental Health Act 2007, which, although applying to closely related clinical populations, proceeded along entirely separate legislative paths. By justifying its proposals for reform of mental health legislation on the grounds of ‘risk’, the Government failed to take into account the implications of enforced treatment on patients who may retain decision-making capacity. [ABSTRACT FROM AUTHOR]