Values in the care for young persons with Prader-Willi syndrome: creating a meaningful life together.

BACKGROUND: Caregivers sometimes feel frustrated by present emphasis on self-determination in the care for individuals with an intellectual disability. They are confronted with situations in which there is a conflict between providing high quality care and respecting the client's autonomy. Such conflicts are prominent in the care for people with Prader-Willi syndrome (PWS). This condition is characterized by overeating behaviour which frequently leads to serious obesity. The central question in the present study is how persons involved, parents and professional caregivers, deal with the problems of the prevention of obesity in young individuals with PWS in everyday life. METHOD: In-depth qualitative interviews were conducted with 23 parents and 14 professional caregivers of 18 persons with PWS. The interview data were analysed using the constant comparative method as described in grounded theory. RESULTS: On the basis of analysis of the interviews four values emerge that parents and professional caregivers indicate as relevant and directive to their acting towards the child or the client: physical health, well-being, freedom and responsibility, and a liveable life. Furthermore, caregivers mentioned several enabling and limiting conditions that influence these values. And they named several interventions they used to realize the values. CONCLUSION: Of importance is the question how to create life in such a way that it is acceptable and meaningful for everybody involved. By building up a relationship to which acceptance and trust are central, a certain amount of independence and responsibility can be promoted. By creating trust it is possible to deal with rules in a less rigid way and to look where there is room for choices.

Toward an unequivocal definition and classification of patient outcomes.

PURPOSE: To determine the extent possible of developing an unequivocal formulation of a conceptual, structural, and contextual definition of "patient outcomes," and the possibility of coming to an agreement on the criteria for classification of patient outcomes. METHODS: An international Delphi survey of 33 experts. FINDINGS: A conceptual, structural, and contextual definition of patient outcomes and priorities for the characteristics of patient outcome classification. CONCLUSIONS: The authors recommend the unequivocalness of nursing terminology, not only for reasons of effectiveness and efficiency, but also to clarify the nursing vocabulary for epistemological reasons.

'A leg to stand on': an existential-phenomenological analysis.

The analysis of a paradigm-case (a person with an injured leg, an autobiographical history related by Dr Sacks) presented here is an illustration of how existential-phenomenological analysis can be done. The aim of existential-phenomenological research is to analyse and to describe some dimensions of being. The person with an injured leg appears 'to bescotomized'. Well then, 'being-scotomized' can be analysed and described as a particular mode of 'being', even as a particular mode of 'being-ill'. 'Being' has been studied (in the philosophical tradition of Husserl, Heidegger, Merleau-Ponty and Sartre) as that existential movement that brings an individual, the 'self', towards the world, meanwhile 'affecting' the personal body, personal time and space, the objects in a person's life-world, the individual's life-world and, finally, coexistence. The study of 'being-ill' is the study of the particular way the self, the body, time and space, the objects, the life-world, and coexistence are affected when being-ill. 'Being-scotomized' may appear as affecting: (i) the self, isolating the subject and leading to a personal disintegration; (ii) the body to which he maintains an ambiguous relationship: being a body and having a body, and not having a part of the body any more; (iii) time and space being vanished with the vanished leg. The subject is 'at' a nowhereness and 'at' a motionless time; there is no meaningful future; (iv) the things in the person's life-world, to which it appears impossible to give the 'right' sense; (v) the life-world, revealing itself as a noland, characterized by silence and motionlessness; (vi) the others in this life-world that appears no-man's-land, uninhabitable nearly by definition. Coexistence reveals not to be possible.

[Patient outcome--towards a definition and classification of nursing care outcome]. / Patient outcome. Naar definiëring en classificering van resultaten van verpleegkundige zorg.

Within the context of the desired unambiguousness in definitions and classifications of the nursing terminology, this literature research attempts to inventory the divergent meanings in recent professional nursing literature of the concept 'patient outcome', as well as the classifications used. Data analysis and interpretation was carried out by means of analytic induction. The results clearly show the ambiguousness of the concept. Nursing literature appears to pay little attention to the study of the structure of (the) patient outcome(s). Then, the context in which the patient outcome has to be situated appears to be described in many divergent ways. Finally, classifications of patient outcomes are found in many variants. This report concludes with suggestions for an unequivocal definition of patient outcome, as well as for the construction of (a) classification(s) of patient outcomes.

[Nursing diagnosis--questions which remained unanswered]. / De verpleegkundige diagnose--vragen die zijn blijven liggen.

This article concerns one of the research questions in the project on 'Terminology in Dutch Nursing: Towards clarification, classification and standardization of nursing concepts', i.c. related to the conceptual definition of nursing diagnosis. On the one hand those parts are reported on which agreement was reached, by means of literature research and analysis of documents, interviews with key-informants and group discussions and through a Delphi research. On the other hand, those aspects of the proposed conceptual definition are elucidated on which discussions seem not to be closed yet or that are missing in the definition for lack of agreement. These discussion points are explored, thus following one of the recommendations of the research project on 'Terminology in Dutch Nursing', namely for further refinement of the proposed working definition of the concept nursing diagnosis. Finally some suggestions are made to realize this solicited refinement.

Screening for bronchiectasis. A comparative study between chest radiography and high-resolution CT.

STUDY OBJECTIVE: The aim of our study was to investigate whether in the search for bronchiectasis a correlation exists between abnormalities on the chest radiograph and high-resolution CT (HRCT), and if HRCT has an additional value when the chest radiography is normal. SUBJECTS AND METHODS: In a prospective study, chest radiographs were compared with HRCT in 84 patients. Analysis of presence and extent of bronchiectasis were made for each bronchopulmonary lobe. RESULTS: Thirty-seven patients had a normal radiograph, from whom 32 had a normal HRCT. The other 5 had a low HRCT severity score with a mild cylindrical bronchiectasis. From the 47 patients with an abnormal radiograph, 36 had signs of bronchiectasis at HRCT; 11 patients, however, had a normal HRCT. The sensitivity for chest radiography to detect bronchiectasis appeared to be 87.8% with a specificity of 74.4%. We found a significant linear relationship between the severity of bronchiectasis at HRCT and abnormalities as seen on the chest radiograph (r=0.62, p=0.0001). CONCLUSION: A normal chest radiograph almost always excludes relevant bronchiectasis and no further investigation seems necessary. There is a significant linear relationship between the severity of bronchiectasis at HRCT and abnormalities as seen on the chest radiograph.

Assessment of bronchiectasis: comparison of HRCT and spiral volumetric CT.

OBJECTIVE: Our goal was to ascertain the sensitivity of spiral CT for the detection of bronchiectasis in comparison with high resolution CT (HRCT). MATERIALS AND METHODS: Thirty-one patients with a suspected clinical diagnosis of bronchiectasis were evaluated with spiral CT (slice thickness 5 mm, pitch 1, reconstruction index 2 mm, 1 s rotation) and HRCT (1.5 mm, interval 10 mm). Analysis of the presence, type, and severity of bronchiectasis was performed for each bronchopulmonary lobe. RESULTS: In 30 patients, 177 lobes were evaluated. At HRCT 14 patients showed signs of bronchiectasis in 32 lobes. Spiral CT confirmed the presence in 29 lobes. In one lobe spiral CT was false positive. The severity score was the same in 23 lobes, in 4 lobes higher at HRCT, and in 2 lobes higher at spiral CT. Spiral CT has a high sensitivity of 91% to detect bronchiectasis with a specificity of 99.3%. Spiral CT demonstrates adequately lack of tapering of the bronchus. CONCLUSION: In patients with suspected bronchiectasis, HRCT is the method of first choice based on greater sensitivity and lower radiation dose. However, spiral CT done for other indications is a reliable method for assessment of bronchiectasis. Inability of patients to hold their breath did not prove to interfere with diagnostic reliability.

[The Dutch nursing concepts framework in registration and record systems]. / Het Nederlands verpleegkundig begrippenkader in registratieen rapportagesystemen.

This article reports on the results and method used in a literature review which was performed as a partial study in the Dutch National Pilot Research in Nursing Terminology. In this study literature stands for documents which are being used in nursing practice. The analysis of these documents points out that the Dutch practical nursing terminology is very heterogeneous. Concepts related to nursing diagnosis and nursing problems are used in many different ways. The arrangement of nursing terminology in general and of nursing diagnosis or nursing problems in particular, shows many dissimilarities. Indications for known classifications are small in number. There is a prodigious conceptual confusion. Community health care and mental health care show interesting efforts concerning classification, acute hospital care however only in a limited way. Community health care seems more advanced in establishing and systematizing nursing data. The results of this literature research indicate a large similarity with the results gathered at the other parts of the National Pilot Research in Nursing Terminology. The credibility of the results of this literature study is considered very high.