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

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

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

What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?

The majority of those diagnosed with cystic fibrosis (CF) now live to adulthood. In response to increased survival age, transition services have been developed to ensure smooth transfer from paediatric to adult specialist healthcare, although the majority of treatment and care continues to be delivered in the home. However, little is known about how young adults and staff conceptualise the nature of the parental role after young people have left paediatric care. The aim of this study is to explore the nature of parental support that is perceived to be available at this time. As part of a larger study of transitional care, semi-structured interviews were conducted with 50 young people with CF aged 13-24 years (32 with experience of transition and/or adult CF services) and 23 specialist healthcare professionals (14 working in adult care) across two CF centres in Southeast England. Interviews took place in young people's homes or within CF services, using a topic guide and were recorded, transcribed and analysed thematically. Four domains of perceived parental support were identified by the young people interviewed, with varying degrees of continuity into adult care: (1) Providing non-clinical practical and emotional support; (2) Acting as 'troubleshooters' in times of health-related crisis; (3) Working in partnership with offspring in ongoing disease management in the home and clinic; (4) Acting as 'protectors' of their children. Young people and service staff expressed tensions in managing parental involvement in post-paediatric consultations and the degree to which parents should be aware of their offspring's deteriorating health and social concerns. Parental anxiety and over-involvement was perceived by many young people and staff as unsupportive. We suggest that although health and social care providers are mindful of the tensions that arise for those leaving paediatric services, the place of parental support in adult care is currently contentious for these 'new' ageing populations. © 2009 Blackwell Publishing Ltd

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

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Trials and tribulations: understanding motivations for clinical research participation amongst adults with cystic fibrosis

In the context of understanding motivations for clinical research participation, many authors consider issues such as informed consent and how patients perceive the research method and process. However, many investigations focus only on one method of research, most commonly the randomised controlled trial. Understanding how chronically ill members of one specific patient group respond to all requests for research participation are rare. Cystic fibrosis (CF), a genetic condition whereby those affected are used to taking a wide array of treatments and attending a specialist care centre over many years, and are generally knowledgeable about their condition, represents an ideal case for investigating how staff requests for clinical research participation are accepted or declined. Using Bloor's systems of relevance framework for risk behaviour and risk reduction, specialist CF centre patients' motivations for participation or non-participation in clinical research can be understood. The framework takes into account two sets of conceptual oppositions: habituation and calculation, constraint and volition. These oppositions represent a range along a continuum of risk behaviour rather than being absolute distinctions. Decisions to participate are influenced mainly by the patient's state of health at the time of request, the nature of the trial and the social context within which sufferers are placed. Understanding why chronically ill patients refuse some requests and yet accept others may assist researchers in designing protocols that take these factors into account and achieve the desired numbers of participants whilst protecting those in vulnerable positions. © 2005 Elsevier Ltd. All rights reserved

A constructive learning algorithm based on back-propagation

There are been a resurgence of interest in the neural networks field in recent years, provoked in part by the discovery of the properties of multi-layer networks. This interest has in turn raised questions about the possibility of making neural network behaviour more adaptive by automating some of the processes involved. Prior to these particular questions, the process of determining the parameters and network architecture required to solve a given problem had been a time consuming activity. A number of researchers have attempted to address these issues by automating these processes, concentrating in particular on the dynamic selection of an appropriate network architecture.The work presented here specifically explores the area of automatic architecture selection; it focuses upon the design and implementation of a dynamic algorithm based on the Back-Propagation learning algorithm. The algorithm constructs a single hidden layer as the learning process proceeds using individual pattern error as the basis of unit insertion. This algorithm is applied to several problems of differing type and complexity and is found to produce near minimal architectures that are shown to have a high level of generalisation ability