Publications by authors named "Itala Paris de Souza"

There are currently between six and eight thousand illnesses classified as rare diseases, 80% of which are of genetic origin and among the studies those of a quantitative and biomedical nature stand out. The objective of this study was to identify and describe the characteristics of scientific studies in Brazil and worldwide using a qualitative approach on rare genetic diseases published in indexed databases in the area of health and social sciences. The Scielo, Lilacs, Medline, PubMed, BDENF, Web of Science, Scopus and CINAHL databases were researched between 2013-2018 using the key words "Qualitative Research" and "Rare Disease.

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Objective: To understand the care by men in situations of chronic illness of one or more of his children, based on the dimensions of care.

Method: It was based on a comprehensive approach and on the (re)view of the database of the matrix research to which the study is linked, with emphasis on three experiences of illness, in which the men effectively participated in the family care: two children with sickle cell anemia; son with adrenoleukodystrophy and son with concomitant diseases (cancer and kidney disease).

Results: The analysis diagram of each family demonstrated different ways of caring, explaining the relationship between the dimensions of care by men: social; affective/relational and physical/circulation, as well as the reverberations between these dimensions in the care.

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