Cystic fibrosis adults' perception and management of the risk of infection with Burkholderia cepacia complex

The risk of infection for cystic fibrosis patients from Burkholderia cepacia complex pathogens is of increasing concern to doctors and scientists. This paper reports on how these patients perceive and manage the risk of cepacia infection using Douglas and Calvez's (1990) typology of four cultures of the community (the central community, dissenting enclaves, isolates, and individualists) and Douglas' works on pollution, risk, and culture. We attempt to develop Douglas's cultural theory in the light of the data, which were drawn from in-depth interviews with 31 adults with cystic fibrosis attending a specialist treatment centre in the UK. We found that our respondents' group membership depended on their health state and contact with the hospital. The central community of adults was found to be dispersing to form a series of isolates, perceiving others who may potentially have infection as individualists. Due to the nature of cepacia infection, no dissenting enclave was identified for this group. Medical and lay uncertainty in testing for infection and managing the risk of its spread was expressed by the majority of adults, many of whom admitted that they limited hospital attendance as a part of managing such risk

Geriatricians' views of advance decisions and their use in clinical care in England: qualitative study

Background: an anticipatory decision document records a person's wishes regarding medical treatment at a time when they have capacity to make choices, to be enacted when this capacity is lost. In England and Wales an advance decision to refuse treatment (ADRT, or advance decision), a legally binding document, is currently rarely used. A disparity is suggested to exist between physicians' support for anticipatory decisions in principle and their lack of impact on decision-making in practice. Objective: to elicit geriatricians' views on advance decisions and their use in decision-making in England. Design: a qualitative approach was taken. Semi-structured interviews were conducted with 10 geriatricians. An inductive approach was used for data analysis. Results: geriatricians held positive views on anticipatory decisions in principle. In practice, they reported being highly likely to follow a decision which was in line with their clinical view. They would also favour an ADRT which was prescriptive in terms of the situation and treatment to which it applied. However, geriatricians expressed concerns in relation to patient understanding of the role and limits of these documents. Participants expressed discomfort in following an ADRT which, in their professional opinion, did not represent the patient's best interests, despite it being a legally binding document. A conflict between doctors' beneficence and patients' autonomy was apparent, with geriatricians differing in their views on how ADRTs should fit into medical decision-making; particularly how far anticipatory decisions can represent ongoing patient autonomy. Conclusion: despite their status in law, an ADRT which conflicts with a geriatrician's clinical opinion may not be implemented, in breach of the Mental Capacity Act. To avoid this, they must be seated within wider advance care planning. © The Author 2011. Published by Oxford University Press on behalf of the British Geriatrics Society

Only when I cough? Adults' disclosure of cystic fibrosis

Cystic fibrosis has traditionally been conceptualized as a fatal childhood disease. In contrast, survival age has been increasing steadily such that adults now routinely seek to gain employment and form close relationships, situations that might require telling others about the disease. Here, the author examines three situations of disclosure based on interviews with 31 adults with the disease. First, in a low-risk situation, for example a short period of social contact, a low level of intimacy exists between the adult with cystic fibrosis and another. Here the disease may be concealed easily with little risk of discovery. Second, in a medium-risk situation, the perceived reaction of the other begins to influence the decision to disclose, as the level of intimacy becomes higher. Last, in high-risk situations, such as employment, the consequences of disclosing or concealing CF are most severe. However, a multiplicity of factors, including perceived social support and disease progression, are seen to influence adults' decisions to disclose their disease

Infection prevention as "a show": a qualitative study of nurses' infection prevention behaviours

Background: Control of infection and prevention of healthcare associated infections is an ongoing issue worldwide. Yet despite initiatives and strategies to reduce the burden that these infections cause, healthcare workers' practice is still reported as suboptimal and these infections persist. Much of the research to date has primarily focused on predicting infection prevention behaviours and factors associated with guideline compliance. While this has given valuable insight, an investigation aiming to understand and explain behaviours that occur in everyday practice from the perspective of the actors themselves may hold the key to the challenges of effecting behaviour change. This study questioned "How can nurses' infection prevention behaviour be explained?" This paper presents one of three identified themes 'Rationalising dirt-related behaviour'. Design: This interpretative qualitative study uses vignettes, developed from nurses' accounts of practice, to explore nurses' reported infection prevention behaviours. Participants: Registered nurses working in an acute hospital setting and had been qualified for over a year. They were recruited while studying part-time at a London University. Methods: Twenty semi-structured interviews were undertaken using a topic guide and vignettes. Interviews were transcribed verbatim and analysed using the framework method. Results: The findings demonstrate that participants were keen to give a good impression and present themselves as knowledgeable practitioners, although it was evident that they did not always follow procedure and policy. They rationalised their own behaviour and logically justified any deviations from policy. Deviations in others were criticised as irrational and explained as superficial and part of a 'show' or display. However, participants also gave a presentation of themselves: a show or display that was influenced by the desire to protect self and satisfy patient scrutiny. Conclusions: This study contributes to the identification and explanation of nurses' infection prevention behaviours which are considered inappropriate or harmful. Behaviour is multifaceted and complex, stemming from a response to factors that are outside a purely 'scientific' understanding of infection and not simply understood as a deficit in knowledge. This calls for educational interventions that consider beliefs, values and social understanding of dirt and infection. © 2013 Elsevier Ltd

The inner workings of an ethics review board for social science research: reflections on research in difficult contexts

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Limited availability of cardiac rehabilitation for heart failure patients in the United Kingdom: findings from a national survey

Background: Participation of patients with heart failure in cardiac rehabilitation in the UK is low. This study investigated the availability of cardiac rehabilitation services for patients with heart failure in the UK and the views of service coordinators on ideal service models. Design: Our study was a cross-sectional national postal survey that was mailed to 342 service coordinators in the UK between April and June 2009. Methods: We developed a 38-item questionnaire to survey all cardiac rehabilitation service coordinators on theNational Audit of Cardiac Rehabilitation register in the UK in 2009. Results: The survey response rate was 71% (244/342). Forty three per cent (105/244) of coordinators did not accept patients with heart failure to their cardiac rehabilitation services. Most coordinators who did accept patients with heart failure offered their services to patients with a variety of cardiac conditions, though referral criteria and models of care varied widely. Services inconsistently used New York Heart Association classes and left ventricular ejection fraction measures to select patients. Few offered separate dedicated heart failure programmes (14%; 33/244) but where these existed they ran for longer than programmes which included patients with heart failure alongside other cardiac patients (10.9 vs 8.5 weeks; F=4.04; p=0.019). Few offered home-based options for patients with heart failure (11%; 27/244). Coordinators accepting patients with heart failure to their cardiac rehabilitation services tended to agree that patients with heart failure should be included in services alongside other cardiac patients (X2=6.2; p=0.013). Conclusions: There is limited access for patients with heart failure to cardiac rehabilitation in the UK. Local policies on referral and selection criteria differ and reflect coordinators views rather than clinical guidance. © The European Society of Cardiology 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav

Threats to embodied well-being: An exploration of how disabled people negotiate barriers in hospital settings

Taking a social model of disability approach, this article explores how disabled people negotiate barriers in the large, modern hospital settings typically found in complex healthcare systems. While there is evidence of intractable barriers in the United Kingdom’s National Health Service, little is known about the actions disabled people take in the face of barriers and the immediate effects of doing so. Analysis of data from a qualitative study of disabled people’s healthcare encounters is presented. This draws on the concept of threats to embodied well-being to understand how disabled people perceive barriers and the influence this perception has on barrier negotiation. It demonstrates that some barriers are unique to healthcare and that these place disabled people in situations where their well-being is threatened. Despite these situations being inherently disempowering, disabled people are forced to take whatever action they can to protect the embodied self. We theorise that barriers are created inadvertently by the design, organisation and healthcare practices characteristics of modern hospital settings. Effective barrier removal requires understanding not only their impact on disabled people’s embodied well-being, but also the political, policy and social relations implicated in their creation

Constructing embodied identity in a 'new' ageing population: a qualitative study of the pioneer cohort of childhood liver transplant recipients in the UK

Medical innovations have created a future of survivorship for many groups of people with a variety of conditions that were previously untreatable or untreated. This has led not only to an expansion of medical activity in a whole variety of new areas but also to the emergence of new groups of individuals defined or defining themselves through their experiences, diagnosis and treatment. Through analysis of in-depth interviews with 27 of the now-adult survivors of the pioneer cohort of children receiving liver transplants in Britain in the early 1980s and 1990s, this paper presents how this group not only illustrate the capacities of modern medicine and healthcare to transform the survival prospects of a more diversified population, but also create new narratives of embodied identity. Specifically, we examine how childhood identities were shaped in three settings; home, hospital and school. At home, parents appeared to shape their child’s identity through controlling tightly a daily medical regime focused on the concept of ‘body as machine’, celebrating their survival as a transplant recipient, yet at the same time socialising their child as a ‘normal’ child, albeit one who had a serious illness. The hospital appeared instrumental in shaping parents’ focus on their child’s body, and offered a way, through other patients with liver disease, for children to feel ‘normal’ in their difference. It was in school, through interaction with ‘healthy’ children and teachers, that corporeality and embodiment appeared most salient, and where social identity was negotiated and more often held in contention. Adult survivors of childhood liver transplant straddle the different discourses of normality and difference as their embodied experiences shape their narratives of identity and shed light on an underexplored aspect of the relationship between medicine and society

Infection prevention as “a show”: a qualitative study of nurses’ infection prevention behaviours

Background: Control of infection and prevention of healthcare associated infections is an ongoing issue worldwide. Yet despite initiatives and strategies to reduce the burden that these infections cause, healthcare workers’ practice is still reported as suboptimal and these infections persist. Much of the research to date has primarily focused on predicting infection prevention behaviours and factors associated with guideline compliance. While this has given valuable insight, an investigation aiming to understand and explain behaviours that occur in everyday practice from the perspective of the actors themselves may hold the key to the challenges of effecting behaviour change. This study questioned “How can nurses’ infection prevention behaviour be explained?” This paper presents one of three identified themes ‘Rationalising dirt-related behaviour’. Design: This interpretative qualitative study uses vignettes, developed from nurses’ accounts of practice, to explore nurses’ reported infection prevention behaviours. Participants: Registered nurses working in an acute hospital setting and had been qualified for over a year. They were recruited while studying part-time at a London University. Methods: Twenty semi-structured interviews were undertaken using a topic guide and vignettes. Interviews were transcribed verbatim and analysed using the framework method. Results: The findings demonstrate that participants were keen to give a good impression and present themselves as knowledgeable practitioners, although it was evident that they did not always follow procedure and policy. They rationalised their own behaviour and logically justified any deviations from policy. Deviations in others were criticised as irrational and explained as superficial and part of a ‘show’ or display. However, participants also gave a presentation of themselves: a show or display that was influenced by the desire to protect self and satisfy patient scrutiny. Conclusions: This study contributes to the identification and explanation of nurses’ infection prevention behaviours which are considered inappropriate or harmful. Behaviour is multifaceted and complex, stemming from a response to factors that are outside a purely ‘scientific’ understanding of infection and not simply understood as a deficit in knowledge. This calls for educational interventions that consider beliefs, values and social understanding of dirt and infection

Evaluation of transition services for young people with cystic fibrosis in Southeast London

We report a project being launched to evaluate transition services for young people with Cystic Fibrosis (CF) living in Southeast London, UK, and attending either King's College Hospital (KCH) or University Hospital Lewisham (UHL). © 2005 Taylor & Francis Group Ltd