Title
The xeroderma pigmentosum syndrome: An experience of integral attention to children with special needs in Cuba
Other title
[El síndrome xeroderma pigmentosa: Una experiencia de atención integral a los niños con necesidades especiales en Cuba]
Date Issued
01 January 2020
Access level
metadata only access
Resource Type
journal article
Publisher(s)
Venezuelan Society of Pharmacology and Clinical and Therapeutic Pharmacology
Abstract
A considerable part of the bibliogra-phy at present refers to the clinical-genetic description of the Xeroderma pigmentosum syndrome as well as its consequences for the subjects that suffer it, in other cases it is dedicated to present sophisticated formulas to protect people from the ultraviolet rays, there are very few references to the needs that in the psychological, preventive and educational order emanate from the so-called “infants of the moon”. In order to contribute to solving this problem, a project was developed to improve education for the prevention and comprehensive educational care of children, adolescents and young people of school age who suffer from this syn-drome. This article presents the dimensions and indicators defined in the research process to characterize the comprehensive educational care demanded by patients who, in different personal, family and social conditions, face the challenge of living with this peculiar condition.
Start page
106
End page
111
Volume
15
Issue
2
Language
English
OCDE Knowledge area
Oncología Dermatología, Enfermedades venéreas
Scopus EID
2-s2.0-85089724208
Source
Revista Latinoamericana de Hipertension
Resource of which it is part
Revista Latinoamericana de Hipertension
ISSN of the container
18564550
Sources of information: Directorio de Producción Científica Scopus