The benefits of prophylaxis: views of adolescents with severe haemophilia.

It is well known and often reported that patients with long-term health conditions have problems adhering to treatment regimens. This is often reportedly worst in adolescents who struggle with the physical and psychological impact of adolescence as well as with the limitations that treatment regimens impose on their day-to-day activities. This article presents results from a larger study that aimed to discover what living with haemophilia in the 21st century was like for boys with severe haemophilia. The overall study was a multi-method, cross-sectional interview based study of 30 boys with severe haemophilia, treated with prophylaxis at a single site in the UK. Although not specifically asked in the interview schedule, opinions about treatment (prophylaxis) were given by 66% of the boys. These boys recognized that prophylaxis offered them protection from bleeding, the older and more sporty boys understood the need for tailored prophylaxis around 'risk' activities such as sport or events away from home. For some boys this meant low dose daily prophylaxis, and this further enhanced treatment adherence, as it became firmly embedded in their daily ritual of health care. This study shows that adolescent boys are in fact adherent with treatment, possibly at a schedule decided upon by them rather than one directed by the haemophilia centre. They are able to comprehend complex treatment decisions and make treatment plans that offer them maximum protection with minimal interference in their day-to-day activities.

'Just an unfortunate coincidence': children's understanding of haemophilia genetics and inheritance.

This paper presents the results of a study talking to children and young people affected with severe haemophilia A and/or haemophilia B about their knowledge and understanding of genetics and inheritance. These data were gathered in a qualitative study using semi-structured interviews with thirty boys aged four to sixteen discussing the impact of haemophilia on their lives. Responses were tape recorded, transcribed and analysed, using thematic analysis; one of the themes identified was genetic knowledge which is presented in this paper. Genetic knowledge was formed within the context of normal day-to-day lives within families affected by haemophilia, with parents and haemophilia centre staff being sources of information about individual inheritance patterns as well as providers of information about the future genetic impact of having haemophilia.

Achieving change through reflective practice: closing the loop.

This paper draws on a small scale, exploratory study which was conducted in the clinical area in the early 1990s (Page 1992). The study drew on the principles of reflective practice in order to enable practitioners to identify learning needs in relation to cardiopulmonary resuscitation (CPR) procedures. Whilst considerable benefit from the reflective sessions was noted, one unanticipated and unpalatable outcome was what might be termed professional apathy. This was manifest in several ways, most importantly in that issues 'for action', identified through reflection, were not prioritised or acted upon. Whilst partial responsibility for this may lie with the somewhat naive way in which the reflective process was facilitated, some responsibility also rests with the nurses in question. One possible explanation is that, for changes in practice to occur, the planning and management of change should form an integral part of the reflective cycle. This point has been largely absent in the reflection literature to date. Such concerns are reviewed here in the context of nurse education's ongoing involvement with the notion of reflective practice and the role of the educationalist in the clinical area. The current political backdrop of 'quality initiatives' to create and demonstrate high standards of clinical care may be useful in advancing the debate.

The management of embarrassment and sexuality in health care.

In this paper, the literature on embarrassment, the related topics of delicacy and privacy, and the implications for nursing and medical practice are discussed, drawing on empirical data from an observational study of fertility clinics, plus other studies involving consultation and/or examination relating to sexual issues. It will be argued that current data are too patchy to give clear guidelines for professional practice, but that the issues should be explored in a more systematic way in (inter)professional education.

PIP: This paper discusses the literature on embarrassment, delicacy and privacy, and the implications for nursing and medical practice, drawing on empirical data from an observational study of fertility clinics, plus other studies involving consultation and/or examination relating to sexual issues. Overall, the data demonstrates how the medical and nursing focus may be severely limited despite the description of a disciplinary society. It has been established that there is no social script, at least for one patient, who may have no idea of the role of being a patient with sexual problems. In the context of dealing with embarrassment, nurses and doctors tend to use the same techniques for preventing the emotion. In addition, reticence, a desire to inquire only about relevant issues and to undertake only relevant activities has been observed in many of these settings. These observations indicate that nurses and doctors still recognize sexuality as a private affair. However, it is argued that current data are too patchy to give clear guidelines for professional practice, and that issues should be explored in a more systematic way in interprofessional education.

Consumerism and health care: the example of fertility treatment.

This paper discusses the concepts of consumerism and the consumer of health care, and applies them to the example of fertility treatment, drawing on the health policy literature and data from a study of couples undergoing fertility treatment. It is argued that the concept of the consumer is a slippery one, that it provides only a partial view of being a patient, and that in particular it neglects emotional issues.

Managing policy research in nursing.

This paper draws on the author's experience as a liaison officer in the Department of Health, England, to explore the topic of using research in policy making. The relationship between the worlds of the researcher and the policy maker is discussed, and an example, the research initiative on human resources and effectiveness, is chosen to illustrate how research topics are formulated.

Nurses' accounts of cardiopulmonary resuscitation.

The relationship between theory and practice has received considerable attention within the nursing literature. This paper uses qualitative data from debriefing interviews with nurses following episodes of cardiopulmonary resuscitation (CPR) to illustrate the complexities of translating sanitized theory into the messiness of practice. The interplay of affect and cognition on both learning from experience and on professional practice are explored. The feelings engendered by the CPR event and the labour required for their management form the second and major part of the paper. These are explored by examining the realities of a CPR event with its accompanying threat of death; success and failure, dignity versus indignity and the place of appropriate emotions throughout.

Purging the emotions: the lack of emotional expression in subfertility and in the care of the dying.

The paper examines emotional expression by drawing on data from patients in two contrasting situations; interview data from couples attending fertility clinics, and audio-recorded conversations with terminally ill patients being cared for at home. Although the literature on subfertility and terminal illness frequently uses a bereavement model to argue for the importance of overt grieving, patients in these studies did not express a wish to discuss their feelings. This finding raises questions about how patients' needs are defined, and whether emotions may be created by discourse.

Tacit nursing knowledge: an untapped resource or a methodological headache?

Nursing education in the United Kingdom currently draws heavily upon Schön's concept of the reflective practitioner, and Benner's concept of the expert. It is claimed that experienced practitioners are unable to articulate all they know, and that their knowledge is of a qualitatively different type from that learned by beginners. Schön states that professional education gives privileged status to systematic, preferably scientific, knowledge, that technical knowledge drives out the artistry and competence of skillful practice, and that knowing that takes precedence over knowing how. In the first part of this paper, various writers on the subject of expert, tacit knowledge are discussed. Second, the paper examines the implications of expert knowledge for nursing research. Certainly it may be considered a methodological headache, since if expert knowledge is tacit it cannot be researched by exclusively verbal methods such as questionnaires; open-ended discussion may be appropriate, or perhaps participant observation. Nor will the findings be neat and easily analysed. But tacit knowledge is also an untapped resource for co-operative enquiry between researcher and practitioner, and nursing research has an important role in enhancing the knowledge creation capacity of practitioners.

The presentation of competence in health care.

This paper briefly addresses the views of social reality which underpin our interpretation of data, and argues that a social actor's statement is one account in a potentially infinite series, in which the actor presents him or herself as morally competent. This argument is illustrated by data from a study of subfertile couples, and other data from studies of parenting handicapped children. There is, however, a disjunction between these calm measured self-presentations, and the professional literature which describes a host of negative emotions. This raises questions about how needs, particularly emotional needs, are defined in health care.