Applying a healthcare model to Huntington's disease: the key worker approach

This paper follows on from an overview of the literature and current policy for Huntington’s disease (HD) published by the BJNN (Wilson et al. 2014). The previous paper highlighted a paucity of knowledge in terms of best practice available for those commissioning services to draw upon when planning care of those with HD. This discussion paper draws on this literature base and findings from a recent longitudinal research study from Wilson’s (2013) unpublished PhD thesis (available online at http://etheses.nottingham.ac.uk/3487/) to suggest a model of care, which may provide some guidance

The encounter with the unknown: Nurses lived experiences of their responsibility for the care of the patient in the Swedish ambulance service

Registered nurses (RNs) have, according to the Swedish National Board of Health and Welfare, the overall responsibility for the medical care in the ambulance care setting. Bringing RNs into the ambulance service are judged, according to earlier studies, to lead to a degree of professionalism with a higher quality of medical care. Implicitly in earlier studies, the work in the ambulance service involves interpersonal skills. The aim of this study was to describe RNs' experiences of being responsible for the care of the patient in the Swedish ambulance service. A reflective lifeworld approach within the perspective of caring science was used. Five RNs with at least five years experience from care in the ambulance care setting were interviewed. The findings show that the essence of the phenomenon is to prepare and create conditions for care and to accomplish care close to the patient. Three meaning constituents emerged in the descriptions: prepare and create conditions for the nursing care, to be there for the patient and significant others and create comfort for the patient and significant others. The responsibility is a complex phenomenon, with a caring perspective, emerging from the encounter with the unique human being

How do parents experience being asked to enter a child in a randomised controlled trial?

<p>Abstract</p> <p>Background</p> <p>As the number of randomised controlled trials of medicines for children increases, it becomes progressively more important to understand the experiences of parents who are asked to enrol their child in a trial. This paper presents a narrative review of research evidence on parents' experiences of trial recruitment focussing on qualitative research, which allows them to articulate their views in their own words.</p> <p>Discussion</p> <p>Parents want to do their best for their children, and socially and legally their role is to care for and protect them yet the complexities of the medical and research context can challenge their fulfilment of this role. Parents are simultaneously responsible for their child and cherish this role yet they are dependent on others when their child becomes sick. They are keen to exercise responsibility for deciding to enter a child in a trial yet can be fearful of making the 'wrong' decision. They make judgements about the threat of the child's condition as well as the risks of the trial yet their interpretations often differ from those of medical and research experts. Individual pants will experience these and other complexities to a greater or lesser degree depending on their personal experiences and values, the medical situation of their child and the nature of the trial. Interactions at the time of trial recruitment offer scope for negotiating these complexities if practitioners have the flexibility to tailor discussions to the needs and situation of individual parents. In this way, parents may be helped to retain a sense that they have acted as good parents to their child whatever decision they make.</p> <p>Summary</p> <p>Discussing randomised controlled trials and gaining and providing informed consent is challenging. The unique position of parents in giving proxy consent for their child adds to this challenge. Recognition of the complexities parents face in making decisions about trials suggests lines for future research on the conduct of trials, and ultimately, may help improve the experience of trial recruitment for all parties.</p

An Alternative Neo-Kohlbergian Approach in Social Pedagogy

In many countries social pedagogues apply ART (Aggression Replacement Training), a multimodal programme designed to help juveniles with severe behaviour problems. In this programme Lawrence Kohlberg’s theory of moral development makes up an important element. The first part of this article offers a presentation of Kohlberg’s theory and some of the critique made of it. The second part describes how the Kohlbergian tradition is implemented in ART. In the final part of the article a problem with the ART programme is pointed out and an alternative neo-Kohlbergian approach is described. This method may prove to be a viable approach in the field of social pedagogy and an adequate supplement to the ART programme

Understanding collaboration between nurses and physicians as knowledge at work

Background: Collaboration between nurses and physicians is linked to positive outcomes for patients, especially in the intensive care unit. However, effective collaboration poses challenges because of traditional barriers such as sex and class differences, hierarchical organizational structures in healthcare, and physicians' belief that they are the final arbiter of clinical decisions. Objective: To further analyze the results of an investigation on how intensive care unit culture, expressed through everyday practices, affected the care of patients who became confused. Methods: A model of the types of knowledge (case, patient, and person) used in clinical work was used to analyze the breakdown in collaboration detected in the original study. Results: Breakdown of collaboration occurred because of the types of knowledge used by physicians and nurses. Certain types of knowledge were privileged even when not applicable to the clinical problem, whereas other types were dismissed even when applicable. Conclusion: Viewing collaboration through the conceptual lens of knowledge use reveals new insights. Collaboration broke down in the specific context of caring for patients with confusion because the use of case knowledge, rather than patient knowledge, was prominent in the intensive care unit culture

Critique of the “tragic case” method in ethics education

It is time for the noon conference. Your job is to impart a career‐changing experience in ethics to a group of students and interns gathered from four different schools with varying curriculums in ethics. They have just finished 1½ h of didactic sessions and lunch. One third of them were on call last night. Your first job is to keep them awake. The authors argue that this “tragic case” approach to ethics education is of limited value because it limits understanding of moral problems to dilemmas; negates the moral agency of the student; encourages solutions that are merely intellectual; and suggests that ethical encounters are a matter for experts. The authors propose an alternative that focuses on three issues: the provider‐patient relationship, the relationships between providers in the everyday world of health work and, the social position of healthcare providers in society. In this approach, teachers are not experts but more like guides on a journey who help students to learn that much of ethical practice comprises living through difficult situations of caring for vulnerable others and who help students to navigate some of these difficulties