Leading through the COVID-19 pandemic: Experiences of UK Executive Nurse Directors.

AIM: To explore the challenges experienced by Executive Nurse Directors during the COVID-19 pandemic, and to inform future nursing leadership strategies. DESIGN: A qualitative research project involving interviews with 21 Executive Nurse Directors from England and Wales. METHODS: Participants were purposively sampled and recruited through Chief Nursing Officers and nursing leadership networks. Semi-structured interviews were conducted and recorded online via Teams. Braun and Clarke's approach to thematic reflexive analysis was applied to data analysis. RESULTS: Executive Nurse Directors played a critical role during the COVID-19 pandemic. Six themes are explored: tensions, and adaptive response to personal leadership styles; uncertainty and support at the board level; responding to national political decision-making; the personal and emotional impact of the role and the sources of effective support; the voice and public profile of nursing; lessons learnt and strategies for future leadership development. Enablers of decision-making included effective multidisciplinary working, freedom from normal organizational constraints, support for innovation, and the development of stronger bonds with colleagues. Barriers to decision-making included limited knowledge of the virus and its impact and lack of guidance, particularly at a national level. Priorities, strategies and actions for recovery include recognizing the emotional impact of being in a high-level decision-making role, protecting staff from burnout and understanding the long-term implications of pandemic work for nurse leaders. CONCLUSION: Future strategies for nursing leadership during public health, national and global emergencies are recommended. IMPACT: This study contributes to the literature exploring the Executive Nurse Director role and their experiences of leading through the COVID-19 pandemic, and identifies priorities, strategies and actions for recovery and learning for the future of senior leadership. REPORTING METHOD: The study adhered to the Consolidated Criteria for Reporting Qualitative Research. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

"Yeah that Made a Big Difference!": The Importance of the Relationship between Health Professionals and Fathers Who Have a Child with Down Syndrome.

Evidence suggests that medical services do not reflect the increased involvement of fathers in childcare, a discrepancy that can often lead to feelings of exclusion and inequality. Fathers who have a child with Down syndrome may encounter many different health professionals during their child's life, therefore it is important to consider this relationship, and investigate the factors that influence their experiences. This is particularly important because the limited research focusing on fathers suggest that those who have a child with Down syndrome can experience increased stress levels and lasting feelings of loss and grief. It is therefore important to address their relationships with health professionals, as these may be a significant resource to prevent these feelings. This study used interpretative phenomenological analysis (IPA) to explore the experiences of seven fathers who have a child with Down syndrome, focusing on their interactions with health professionals. The analysis showed that the major factors associated with negative experiences were feelings of exclusion, receiving overly negative information about the condition and a perceived lack of on-going support. Positive experiences were associated with being made to feel like an equal parent, being given direct/clear information and being congratulated on the birth of their child. These results provide an insight into what fathers expect in terms of their own and their child's care and highlight that health professionals have an important and extensive role in influencing fathers' experiences of Down syndrome.

Mitochondrial donation, patient engagement and narratives of hope.

This article develops the sociology of hope and patient engagement by exploring how patients' perceptions and actions are shaped by narratives of hope surrounding the clinical introduction of novel reproductive techniques. In 2015, after extensive public debates, the UK became the first country to legalise a mitochondrial donation technique aimed at preventing the transmission of inherited disorders. The article draws on the accounts of twenty-two women of reproductive age who are at risk of having a child with mitochondrial disease and would be the potential target of the technique. We explore the extent to which our participants engaged with the public debates and how they accounted for their support of mitochondrial donation. We show that while the majority of our participants were in favour of legalisation, they did not necessarily wish to use the technique themselves. We found that hope was multi-faceted, involving hope for self, hope for family and hope for society. We conclude by considering the implications of hope narratives for patients and families and the important but potentially limited role that patients can play as advocates for technology.

Mobile learning devices in the workplace: 'as much a part of the junior doctors' kit as a stethoscope'?

BACKGROUND: Smartphones are ubiquitous and commonly used as a learning and information resource. They have potential to revolutionize medical education and medical practice. The iDoc project provides a medical textbook smartphone app to newly-qualified doctors working in Wales. The project was designed to assist doctors in their transition from medical school to workplace, a period associated with high levels of cognitive demand and stress. METHODS: Newly qualified doctors submitted case reports (n = 293) which detail specific instances of how the textbook app was used. Case reports were submitted via a structured online form (using Bristol Online Surveys - BOS) which gave participants headings to elicit a description of: the setting/context; the problem/issue addressed; what happened; any obstacles involved; and their reflections on the event. Case reports were categorised by the purpose of use, and by elements of the quality improvement framework (IoM 2001). They were then analysed thematically to identify challenges of use. RESULTS: Analysis of the case reports revealed how smartphones are a viable tool to address clinical questions and support mobile learning. They contribute to novice doctors' provision of safe, effective, timely, efficient and patient-centred care. The case reports also revealed considerable challenges for doctors using mobile technology within the workplace. Participants reported concern that using a mobile phone in front of patients and staff might appear unprofessional. CONCLUSION: Mobile phones blur boundaries between the public and private, and the personal and professional. In contrast to using a mobile as a communication device, using a smartphone as an information resource in the workplace requires different rituals. Uncertain etiquette of mobile use may reduce the capacity of smartphone technology to improve the learning experience of newly qualified doctors.

Social and ethical issues in mitochondrial donation.

INTRODUCTION OR BACKGROUND: The UK is at the forefront of mitochondrial science and is currently the only country in the world to legalize germ-line technologies involving mitochondrial donation. However, concerns have been raised about genetic modification and the 'slippery slope' to designer babies. SOURCES OF DATA: This review uses academic articles, newspaper reports and public documents. AREAS OF AGREEMENT: Mitochondrial donation offers women with mitochondrial disease an opportunity to have healthy, genetically related children. AREAS OF CONTROVERSY: Key areas of disagreement include safety, the creation of three-parent babies, impact on identity, implications for society, definitions of genetic modification and reproductive choice. GROWING POINTS: The UK government legalized the techniques in March 2015. Scientific and medical communities across the world followed the developments with interest. AREAS TIMELY FOR DEVELOPING RESEARCH: It is expected that the first cohort of 'three parent' babies will be born in the UK in 2016. Their health and progress will be closely monitored.

How a mobile app supports the learning and practice of newly qualified doctors in the UK: an intervention study.

BACKGROUND: The transition from medical school to the workplace can be demanding, with high expectations placed on newly qualified doctors. The provision of up-to-date and accurate information is essential to support doctors at a time when they are managing increased responsibility for patient care. In August 2012, the Wales Deanery issued the Dr.Companion© software with five key medical textbooks (the iDoc app) to newly qualified doctors (the intervention). The aim of the study was to examine how a smartphone app with key medical texts was used in clinical workplace settings by newly qualified doctors in relation to other information sources and to report changes over time. METHODS: Participants (newly qualified - Foundation Year 1 - doctors) completed a baseline questionnaire before downloading the iDoc app to their own personal smartphone device. At the end of Foundation Year 1 participants (n = 125) completed exit questionnaires one year later. We used Wilcoxon Signed Rank test to analyse matched quantitative data. RESULTS: We report significant changes in our participants' use of workplace information resources over the year. Respondents reduced their use of hard-copy and electronic versions of texts on PCs but made more use of senior medical staff. There was no significant difference in the use of peers and other staff as information sources. We found a significant difference in how doctors felt about using a mobile device containing textbooks in front of patients and senior medical staff in the workplace. CONCLUSIONS: Our study indicates that a mobile app enabling timely, internet-free access to key textbooks supports the learning and practice of newly qualified doctors. Although participants changed their use of other resources in the workplace, they continued to consult with seniors. Rather than over-reliance on technology, these findings suggest that the app was used strategically to complement, not replace discussion with members of the medical team. Participants' uncertainty about using a mobile device with textbook app in front of others eased over time.

Negotiating identity at the intersection of paediatric and genetic medicine: the parent as facilitator, narrator and patient.

This article identifies a significant transformation in the role and identity of parents accompanying their child to clinic. This shift is a product of the intersection between paediatric and genetic medicine, where parents play a critical role in providing information about their child, family and ultimately, about themselves. To provide a context for this matrix, two broad areas of sociological inquiry are highlighted. The first is explanations of the role a parent plays in paediatric medicine and the second is the diagnostic process in paediatric genetics and the implications for parent and child identities. Drawing from an ethnographic study of clinical consultations, attention is paid to the changing role of parenthood and the extended role of patienthood in paediatric genetic medicine.

Making patients political: Narrating, curating, enacting, and navigating the 'idealised policy patient'.

In this article we develop the concept of the 'idealised policy patient' to contribute to a better understanding of patient-family activism and the mechanisms through which powerful and persuasive patient narratives are facilitated and mobilised. The context through which we explore the idealised policy patient is the UK debates about the legalisation of mitochondrial donation, which primarily took place between 2011 and 2015. In our example, the idealised policy patient was constructed around a culturally persuasive narrative of patient suffering, where mitochondrial donation was presented as a desirable and ethical solution. We draw on interviews with patient-families and stakeholders, and documentary analysis to identify four dimensions of the idealised policy patient - narrating, curating, enacting and navigating. Narrating describes how the idealised policy patient appears in public and policy spaces, as a culturally available narrative which conveys certain meanings and is designed to invoke an emotional and practical response. Curating identifies the multiple forms of labour and facilitation involved in supporting patient-families in activist activities which strengthen the dominant narrative and its embodiment. Enacting focuses on the work of patient-families themselves in supporting and contributing to the idealised policy patient in a way that enlivens and embodies the specifically curated narrative. Finally, navigating considers how those offering an opposing viewpoint position themselves in relation to the idealised policy patient. To conclude, we argue that medical sociology has often given insufficient scrutiny to how the capacity of patients to leverage their status for political ends is bolstered through alignment with existing powerful groups, particularly in hegemonic campaigns. We encourage future researchers to examine how the idealised policy patient is reproduced and reorientated within different policy contexts.

Genetic testing and family entanglements.

The development of the 'new genetics' in the early 1990's opened up a new space which required some patients and families to understand and navigate genetic testing. The social science literature that has grown alongside the 'new genetics', now spanning more than thirty years, has continued to explore and question assumptions about attitudes and responses towards genetic technologies. In this article we highlight how individual experience of genetic disease and personal responses towards genetic technologies can only be understood by considering their context. We focus on the rich literature on family within sociology, science and technology studies, anthropology, and family studies, to explore the myriad ways in which family is implicated in the patient experience of genetic testing. We explore these connections by drawing on a set of interviews held with individuals who have undergone a predictive test for a genetic condition, including Huntington's Disease and breast cancer. Five themes were developed: family disclosure, family gatekeeping, going for testing, individual and collective communication practices, and receiving a negative test result. To conclude, we highlight how these connections might be considered through the lens of entanglement, explaining the complex mechanisms through which family and genetics are intimately entwined.

Share and protect our health data: an evidence based approach to rare disease patients' perspectives on data sharing and data protection - quantitative survey and recommendations.

BACKGROUND: The needs and benefits of sharing health data to advance scientific research and improve clinical benefits have been well documented in recent years, specifically in the field of rare diseases where knowledge and expertise are limited and patient populations are geographically dispersed. Understanding what patients want and need from rare disease research and data sharing is important to ensure their participation and engagement in the process, and to ensure that these wishes and needs are embedded within research design. EURORDIS-Rare Diseases Europe regularly surveys the rare disease community to identify its perspectives and needs on a number of issues in order to represent rare disease patients and be their voice within European and International initiatives and policy developments. Here, we present key findings from a large quantitative survey conducted with patients with rare diseases and family members as part of a continuous evidence-based advocacy process developed at EURORDIS. The aim of this survey was to explore patient and family perspectives on data sharing and data protection in research and healthcare settings and develop relevant recommendations to support shaping of future data sharing initiatives in rare disease research. This survey, translated into 23 languages, was carried out via the Rare Barometer Programme and was designed to be accessible to a diverse population with a wide range of education backgrounds. It was widely disseminated via patient organisations worldwide to ensure that a wide range of voices and experiences were represented. MAIN FINDINGS: Rare disease patients, regardless of the severity of their disease and their socio-demographic profile, are clearly supportive of data sharing to foster research and improve healthcare. However, rare disease patients' willingness to share their data does come with specific requirements in order to respect their privacy, choices and needs for information regarding the use of their data. CONCLUSIONS: To ensure sustainability and success of international data sharing initiatives in health and research for rare diseases, appropriate legislations need to be implemented and multi-stakeholder efforts need to be pursued to foster cultural and technological changes enabling the systematic integration of patients' preferences regarding sharing of their own health data.

Three persons, three genetic contributors, three parents: Mitochondrial donation, genetic parenting and the immutable grammar of the 'three x x'.

In 2015, two novel in vitro fertilisation techniques intended to prevent the inheritance of mitochondrial disease were legalised in the United Kingdom, following an intense period of inquiry including scientific reviews, public consultations, government guidance and debates within the Houses of Parliament. The techniques were controversial because (1) they introduced a third genetic contributor into the reproductive process and (2) they are germline, meaning this genetic change could then be passed down to subsequent generations. Drawing on the social worlds framework with a focus on implicated actors and discursive strategies, this article explores key features of the UK mitochondrial debates as they played out in real time through policy documents and public debate. First, it situates the technology within a repertoire of metaphors, emotional terminology and their politics. It then explores the immutable grammar of 'three x x' that formed a key component of the political debate, by focusing on how institutional reviews discursively negotiated uncertainty around genetic parentage and how beneficiaries were implicated and rendered distant. Following the 2016 announcement of the first baby born through mitochondrial donation (in Mexico) and several pregnancies (in the Ukraine), we close with a discussion about the specific nature of UK regulation within a global economy. Overall, this article contributes to a much needed sociological discussion about mitochondrial donation, emerging reproductive technologies and the cultural significance of genetic material and genetic relatedness.

Reproductive decision making: interviews with mothers of children with undiagnosed developmental delay.

Reproductive decision making is complex and personal. Having a child with undiagnosed developmental delay can further complicate these decisions, as recurrence risks are unknown. This qualitative study is an exploration of the experiences of parents who have a child with an undiagnosed developmental disorder, focusing on their reproductive decisions. The aims of the research were to explore the reproductive decision making process and examine the factors that influence these decisions. Data were collected from in-depth semi-structured interviews with five mothers of children without a diagnosis. Transcripts were analysed using an interpretative phenomenological analysis. Analysis identified five factors that were considered by participants when contemplating reproductive decisions: future uncertainty, perceptions of risk, the potential impact a child would have on their current children, expectations of a family and the desire for another child. Being aware of the factors that influence reproductive decisions for these mothers and being sensitive to them can enable genetic counsellors to carry out their role more effectively, as they are aware of the factors that need to be discussed and explored before a decision is made.

Can a mobile app improve the quality of patient care provided by trainee doctors? Analysis of trainees' case reports.

OBJECTIVES: To explore how a medical textbook app ('iDoc') supports newly qualified doctors in providing high-quality patient care. DESIGN: The iDoc project, funded by the Wales Deanery, provides new doctors with an app which gives access to key medical textbooks. Participants' submitted case reports describing self-reported accounts of specific instances of app use. The size of the data set enabled analysis of a subsample of 'complex' case reports. Of the 568 case reports submitted by Foundation Year 1s (F1s)/Year 2s (F2s), 142 (25%) detailed instances of diagnostic decision-making and were identified as 'complex'. We analysed these data against the Quality Improvement (QI) Framework using thematic content analysis. SETTING: Clinical settings across Wales, UK. PARTICIPANTS: Newly qualified doctors (2012-2014; n=114), F1 and F2. INTERVENTIONS: The iDoc app, powered by Dr Companion software, provided newly qualified doctors in Wales with a selection of key medical textbooks via individuals' personal smartphone. RESULTS: Doctors' use of the iDoc app supported 5 of the 6 QI elements: efficiency, timeliness, effectiveness, safety and patient-centredness. None of the case reports were coded to the equity element. Efficiency was the element which attracted the highest number of case report references. We propose that the QI Framework should be expanding to include 'learning' as a 7th element. CONCLUSIONS: Access to key medical textbooks via an app provides trusted and valuable support to newly qualified doctors during a period of transition. On the basis of these doctors' self-reported accounts, our evidence indicates that the use of the app enhances efficiency, effectiveness and timeliness of patient-care in addition consolidating a safe, patient-centred approach. We propose that there is scope to extend the QI Framework by incorporating 'learning' as a 7th element in recognition of the relationship between providing high-quality care through educational engagement.

Unexpected tissue and the biobank that closed: an exploration of value and the momentariness of bio-objectification processes.

Unanticipated situations can arise in biobanking. This paper empirically documents unexpected situations at the anonymous biobank 'Xbank'. Firstly, Xbank received an unexpected and significant quantity of tissue from the historical archive of a hospital network. Secondly, Xbank had its funding withdrawn before the designated end date for the grant, meaning the bank needed to either re-house or destroy its holdings. This paper articulates and uses the theoretical frameworks of bio-objectification and tissue economies to analyse the experiences of Xbank and draw out further implications of the potential precariousness of biobanking practice. The case study allows an inspection of how the value of tissue is configured and reconfigured as institutional contexts shift. We introduce the notion of momentariness as a way of grappling with the related temporariness and perpetualness of biobanking practice in both a theoretical and practical policy context.

Closure of a human tissue biobank: individual, institutional, and field expectations during cycles of promise and disappointment.

Biobanks are increasingly being established to act as mediators between patient-donors and researchers. In practice, some of these will close. This paper details the experiences of one such bank. We report interviews with the bank's staff and oversight group during the period when the bank ceased biobanking activity, reconfigured as a disseminator of best practice, before then closing altogether. The paper makes three distinct contributions: (i) to provide a detailed account of the establishment, operational challenges, and eventual closure of the bank, which makes clear the rapid turnover in a cycle of promise and disappointment; (ii) to explore this in terms of a novel analytical focus upon field, institutional, and individual expectations; and (iii) to use this typology to demonstrate how, even after the bank's closure, aspects of its work were reconfigured and reused in new contexts. This provides a unique empirical analysis of the under-reported issue of biobank closure.

What binds biosociality? The collective effervescence of the parent-led conference.

Questions of community are central to many research settings in the social sciences. Rabinow argued that, in the wake of the Human Genome Project, an increasingly important form of collectivity would be biosociality. Biosociality recognises a central role for biomedical knowledge in constructing genetic identities and producing and reproducing social relationships. Accordingly, it is often imagined as a new form of social solidarity. We draw on observations of parent-led conferences to explore the way in which biosociality is expressed at events organised around a particular genetic syndrome - 22q11 deletion syndrome. The parent-led conferences took place within the United Kingdom between 2007 and 2010 and were observed as part of a multi-sited ethnographic study. By bringing together a geographically dispersed group of people together within the same physical location, conferences offer an ideal platform to empirically examine sociality. Durkheim used the term collective effervescence to describe the collective expression of heightened emotion. We suggest that in the case of the 22q11 deletion syndrome activities discussed in this paper, collective effervescence is a mechanism through which individuals become a collective. We argue that parent-led conferences gather individuals in one location on the basis of common biological factors, but it is the shared emotional experience of being together that consolidates and renews the connection between members.

Parent-led conferences as sites of medical work.

Conferences are novel sites for understanding medical work. Through describing styles of presentation that take place at conferences attended by patients and parents, this article highlights how clinicians on stage present ordinary and extraordinary aspects of medicine. Attention is drawn to the reaction of the parents in the audience. The power of the presenter to direct proceedings highlights the potential vulnerability of the audience. The relationship between clinician on stage and parents in the audience reflects the clinical relationship between doctor and patient. But through identifying insiders and outsiders, the conference setting also enables new relationships and collective identities to be formed. Drawing on an ethnographic study of rare disease conferences, this article extends understanding of medical work by identifying how conferences offer new ways of witnessing the clinical gaze, the doctor-patient relationship and the formation and enactment of a conference community.