Percepção de genitores e cuidadores sobre a fibrose cística em um centro de referência no nordeste do Brasil

Abstract

Cystic Fibrosis or Mucoviscidosis is an autosomal recessive genetic disease that causes thickened secretions, ffecting the functioning of exocrine glands, with chronic and progressive evolution. The objective of the research was to verify the knowledge about the disease of parents and caregivers of children and adolescents with cystic fibrosis, attended by the referral outpatient clinic of the State of Sergipe. This is a qualitative descriptive study and the method used was a content analysis. Data collection was done in July 2019 through interviews and participation with the participation of 13 caregivers. The results showed that most caregivers were parents, who knew the purpose of neonatal screening but not the diseases screened by it. Only 3 participants correctly conceptualized the disease. and all cited at least one symptom. Respiratory system care was most cited, followed by drug and food care. Citizens were more professionals in the orientation process. Doctors were the most cited professionals in the orientation process. Most participants have no doubt about the disease, differing from the results of the previous categories.