O cotidiano da família com filhos portadores de fibrose cística: subsídios para a enfermagen pediátrica.

Abstract

Cystic Fibrosis is a genetic disorder characterized by the increase in the production of mucus whose accumulation on some organs causes: chronic obstructive pulmonary disease, pancreatic insufficiency and a high level of electrolytes in sweat. This study aims at describing the routine of families with children bearing cystic fibrosis as to the aspects concerning the effects of that chronic disease on the family dynamics. To that end, a qualitative study was conducted. Empirical data were collected by means of interviews with the families of patients aged less than 18 years old undergoing treatment at Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto da Universidade de São Paulo. The following themes emerged from the collected data: family involvement, acceptance/understanding of the disease and coping with challenge. A dependent life was identified which was related to the fact that the disease caused physical waste and emotional disturbance for both the child and the family. Implications for nursing: constitution of care models focusing on the family by considering the environment, life style and health as its basic fundamentals.