Although increasing attention is being focused on the emotional aspects of caring for dying children and their families, few research reports concentrate on the experiences of mothers, particularly ...in different countries. This article describes the findings of an exploratory, descriptive study that investigated the experiences of mothers from five different countries who each had a child die from cancer in the past 6 months. Principal investigators, members of the International Work Group on Death, Dying, and Bereavement, conducted semistructured interviews with 21 mothers in their own countries. No culturally related differences were noted among mothers, and the mothers' recall of their experiences are more similar than different. All mothers, irrespective of country, described similar reactions to the diagnosis, management of the end-stage illness, and challenge of coping with bereavement. Lessons learned from this project provide suggestions for future research across countries.
Background. There are no available data concerning the incidence and the clinical pattern of coeliac disease in immigrant children coming to Italy from developing countries.
Aims. To evaluate the ...epidemiological and clinical features of coeliac immigrant children coming to Italy.
Patients and methods. Hospital records of 1917 children diagnosed in 22 Italian Centres from 1999 to 2001 as having coeliac disease were retrospectively reviewed, comparing immigrant patients versus Italian ones.
Results. 36/1917 (1.9%) coeliac children were immigrant. This prevalence was similar to that of the immigrant children among the whole paediatric population living in Italy. Prevalence was influenced by geographical factors, being higher in Northern Italy (1.7%) and in Central Italy (2.5%) than in Southern–Insular Italy (1.5%), as consequence of a higher proportion of immigrants in these regions. The native areas of the immigrant children were East Europe (15/36), Northern Africa (14/36), Southern Asia (4/36), West Africa (1/36), East Africa (1/36) and the Middle East (1/36). The clinical spectrum and dietary habits in immigrant patients were similar to those of the Italian children.
Conclusions. Coeliac disease among the immigrant children coming from developing countries is an emerging problem, and physicians need to be fully aware of it. An important risk factor for coeliac disease in immigrant children appears to be sharing of the same dietary habits with the Italian population. The finding of coeliac disease in children coming from many countries worldwide suggests that coeliac disease is a global public health problem.
End-of-life care and decisions, part 1 Werth, James L; Blevins, Dean; Toussaint, Karine L ...
The American behavioral scientist (Beverly Hills),
10/2002, Letnik:
46, Številka:
2
Journal Article
In pediatrics, different surgical and medical diseases present an indication to small bowel transplantation (SBT). Short bowel syndrome prevails among surgical pathologies although compared with the ...same condition in adults it often shows a reversible “intestinal failure” for a greater possibility of small bowel adaptation in younger patients. In childhood medical pathologies are more numerous and they include either some chronic intestinal pseudo-obstructions and “intractable diarrheas” a term that encompasses all conditions in which a severe and persistent diarrhea can cause irreversible intestinal failure requiring a prolonged parenteral nutrition (PN) that undertakes the role of an “artificial bowel.”
Intractable diarrheas are usually due to congenital diseases of intestinal mucosa, such as microvillous congenital atrophy or epithelial dysplasia. Among congenital enterocyte diseases that may cause a severe diarrhea, at least in the first months of life, there is glucose- galactose malabsorption (GGM), which is a rare congenital disease due to a selective defect of intestinal transport of these two monosaccharides. This disease is characterized by neonatal onset of severe, watery, acidic diarrhea, which was first described in 1962 simultaneously by French and Swedish authors. In the past the severity of diarrhea and the difficulties of its management usually caused an early death. Growing knowledge of this pathology and the possibility of a precocious PN, in particular, have modified prognosis, permitting the survival of these patients although life quality is not always excellent.
We report our experience with three siblings, affected by GGM, of consanguineous parents (first cousins), for whom we have a sufficient follow-up to evaluate eventual conditioning of nutritional and dietetical management on growth and life quality.
Chronic intestinal pseudo-obstruction (CIP) is a disorder of the propulsion of the intestinal content, due to a disturbance in the intestinal and colonic myoelectric activity. The diagnosis is a ...clinical one based on signs and symptoms of intestinal obstruction in the absence of a mechanical luminal obstruction.
This disorder was first described by Meyer-Ruge in 1971. It is characterized by hyperplasia of the submucosus plexus with giant intramural ganglia. Subsequently, the definition of Neuronal Intestinal Dysplasia (NID) was given describing the possible different extension of the disease that can involve either the colon only or the whole intestinal tract. Thus, the clinical features of the disease, although of primary importance, can vary for severity, onset and evolution.
The confusion existing about the interpretation of this syndrome is due to the fact that intestinal propulsion is regulated by interactions between smooth muscle cells, extrinsic nervous system and hormones, and any disorder that interferes with such mechanism that can alter intestinal motility.
CIP can be primitive or secondary to neurofibromatosis, chronic proctitis, anorectal abnormalities, or generally secondary to insult-producing pathologies similar to NID. Primitive forms that are not caused by a known systemic disease are generally much more severe and mainly occur in childhood. Frequently, they have a neonatal onset but symptoms can appear at any age and, as it happens in adults, the beginning can be gradual or unexpected with a variable clinical course.' We examined retrospectively our series of patients affected by a primitive form of CIP to study the clinical and therapeutical variability of this syndrome, with reference to the necessity of parenteral nutrition (PN) and its duration. Moreover, we evaluated who and how many of these patients could be considered as candidates for small bowel transplantation (SBT).
As researchers embrace open and transparent data sharing, they will need to provide information about their data that effectively helps others understand its contents. Without proper documentation, ...data stored in online repositories such as OSF will often be rendered unfindable and unreadable by other researchers and indexing search engines. Data dictionaries and codebooks provide a wealth of information about variables, data collection, and other important facets of a dataset. This information, called metadata, provides key insights into how the data might be further used in research and facilitates search engine indexing to reach a broader audience of interested parties. This tutorial first explains the terminology and standards surrounding data dictionaries and codebooks. We then present a guided workflow of the entire process from source data (e.g., survey answers on Qualtrics) to an openly shared dataset accompanied by a data dictionary or codebook that follows an agreed-upon standard. Finally, we explain how to use freely available web applications to assist this process of ensuring that psychology data are findable, accessible, interoperable, and reusable (FAIR; Wilkinson et al., 2016).
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