ABSTRACT Objective: To understand the experience of adults living with cystic fibrosis. Method: A qualitative study based on the social phenomenology by Alfred Schütz, carried out with 12 adults interviewed in 2016. The statements were analyzed and organized into concrete categories. Results: The fol...
A fibrose cística é uma doença crônica, progressiva e fatal. Há algum tempo era incomum os pacientes portadores dessa doença viverem além da infância, no entanto, os avanços no tratamento têm possibilitado um aumento na expectativa de vida dessas pessoas e com isso novos desafios no processo de...
ABSTRACT Objectives: to search for nursing interventions focused on the improvement of quality of life and promotion of self-care of adolescents suffering from the Cystic Fibrosis. Method: literature review. The inclusion criteria were: primary studies and studies with interventions developed by nurses...
OBJECTIVES: to validate the health-related quality of life measuring instrument DISABKIDS(r) - Cystic Fibrosis Module (self version) for Brazilian children and adolescents. METHOD: methodological study in which a sample of 113 participants (54 girls and 59 boys; mean age 11.91 years and SD=2.79) was cons...
This study aimed to understand difficulties experienced by mothers in life with, and caring for, their children with cystic fibrosis. A descriptive-exploratory study with a qualitative character, its population consisted of 14 women. Data collection involved a semi-structured interview. The statements' a...
Objective. Describing the experience of patients with cystic fibrosis (CF) and their families using the internet as a means for information, interaction and exchange of experiences with this disease. Methodology. A descriptive qualitative exploratory study was carried out in 2011. The subjects of the stu...
Este estudo tem por objetivo compreender o significado de uma organização de pacientes às famílias com portadores de fibrose cística. Utilizou-se como referência o método qualitativo, fenomenológico. Foram realizadas entrevistas com 14 famílias residentes nas regiões Norte e Noroeste do Estado ...
No planejamento familiar em famílias de crianças portadoras de mucoviscidose, estuda-se a importância da própria doença como fator determinante do planejamento. Apresentam-se e discutem-se as expectativas de uma populaçäo de crianças mucoviscidóticas matriculadas na Unidade de Pneumologia do Ins...
