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.

Predictive genetic testing for Huntington's disease: Exploring participant experiences of uncertainty and ambivalence between clinic appointments.

Ambivalence and uncertainty are key themes throughout the psychology of healthcare literature. This is especially so for individuals at risk of Huntington's disease (HD) deliberating the decision to undergo genetic testing because there is currently no treatment that modifies disease progression. A better understanding of the experience of making a decision about genetic prediction will help practitioners support and guide individuals through this process.

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.

Cigarette smoke exposure of hospitalised children: Prevalence of smoking in parents or carers and admission practices of health services.

Aim: The aim of this study is to understand the exposure to second-hand tobacco smoke in the homes of hospitalised children through: (i) understanding the prevalence of smoking in adults or carers and (ii) examining the health services' approach to identifying parental smoking status.

Methods: This prospective observational study consisted of two surveys: one administered to parents/carers of hospitalised children and one to health services. The first cross-sectional survey aimed to elicit the proportion of children requiring admission to a regional Victorian general paediatric unit who live with adults who smoke cigarettes.

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.

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.

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.

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.

"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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Communicating about haemophilia within the family: the importance of context and of experience.

This study examines communication within families affected by haemophilia, focusing especially on communication about carrier status. A qualitative study using semi-structured interviews with family members in the UK revealed recurrent patterns in communication strategies and styles. Participants drew a marked contrast between the nature of communication within the clinic and within the home.

Lysosomal enzyme secretory mutants of Dictyostelium discoideum.

Dictyostelium discoideum secretes a number of lysosomal enzymes during axenic growth and upon suspension in a low ionic strength, non-nutrient buffer (standard secretion conditions). These secretory characteristics have allowed us to identify 74 lysosomal enzyme secretory mutants generated by N-methyl-N'-nitro-N-nitrosoguanidine mutagenesis. The majority of these mutants fell into one of four classes, on the basis of their secretory characteristics in non-nutrient buffer.