[A qualitative approach to rare genetic diseases: an integrative review of the national and international literature].

Clicks: 329
ID: 56800
2019
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Abstract
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." A total of 171 articles, classified by year, country, language, rare disease type, data collection strategy, knowledge area and theme were selected. The texts reveal the relevance of qualitative studies on rare genetic diseases in their ability to support organization, decision-making and health training in a way that responds to the social and individual needs of the community. It is important, however, to conduct further studies, especially within Brazil, that address rare genetic conditions, revealing the experiences and how they affect the personal, family, professional and organizational interactions in terms of the proper and effective modes of care.
Reference Key
souza2019aciencia Use this key to autocite in the manuscript while using SciMatic Manuscript Manager or Thesis Manager
Authors Souza, Ítala Paris de;Androlage, Juliana Soares;Bellato, Roseney;Barsaglini, Reni Aparecida;
Journal Ciencia & saude coletiva
Year 2019
DOI
S1413-81232019001003683
URL
Keywords
qualitative research consumer perceptions opiate substitution therapy opioid replacement therapy pharmacotherapy in regional victoria

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