文章基本信息

标题：A experiência de crescer com fibrose cística
本地全文：下载
作者：Juliana Bredemeier ; Cláudia Franzoi Fam Carvalho ; William Barbosa Gomes 等
期刊名称：Psico
印刷版ISSN：0103-5371
电子版ISSN：1980-8623
出版年度：2011
卷号：42
期号：3
语种：Portuguese
出版社：Faculdade de Psicologia, Pontifícia Universidade Católica do Rio Grande do Sul
摘要：Eleven persons with cystic fibrosis (CF) were interviewed about their experience of growing up with the disease. The testimonies were analyzed in three steps: description, reduction, and interpretation. The description pointed out the difficulty in performing the treatment in accordance to work and study demands. The reduction stressed that the shock with the diagnosis and the difficulty to disclose the disease are a central phenomena of the patients’ experience. Critical analysis led us to interpret that growing up with CF is a unique experience, reflected in multiple acceptance and adaptation strategies to the disease. Late diagnosis, family support, disease disclosure and the search for a job represent transversal issues in the patients’ experience. Public health policies should be the cornerstone of strategies promoting health and quality of life designed to meet the true needs of both patients and families.
关键词：Chronic disease;cystic fibrosis;life experience;psychosocial aspects;qualitative study.;Enfermedades crónicas;fibrosis quística;experiencia de vida;aspectos psicosociales;estudio cualitativo.;Doença crônica;fibrose cística;experiência de vida;aspectos psicossociais;estudo qualitativo.