Fibrose Cística : des-velando o significado para a família

Abstract

The Cystic Fibrosis (CF), as known as Mucoviscidosis is a systemic and metabolic disease genetically acquired and commonly affecting Caucasian subjects from European ascendency and it is very rare among Asian and African subjects. It was described at first time by Andersen in 1938, when only 20% of children survived until the first year of life due to a disease characterized by having increased amounts of sodium and chloride in their sweat, known as "salty kiss disease". Following the evolution in Genetics and Therapeutics is possible to realize that patients of CF presented an increase of survival in the last 30-40 years. The experience lived by a family member affected by CF is a phenomenon that may produce changes of life and the way to see the world. This disease demands to the family a continuous care of antibiotics therapy, enzymes, physiotherapy, inhalation and routine concerns about the patient. It is essential to health professionals to understand the pathology, its clinical manifestation, the use of therapeutics and the changes in the family environment who are facing a CF patient. This study has the aim to understand the family experiences with a CF patient. It was used a qualitative and phenomenological method. The data were collected by a guiding question: "Could you explain what does mean to you to live with a CF patient in your family?" The subjects of the research was composed by 21 members of 14 families who are facing a CF member among them, registered in the Associação Paranaense de Assistência à Mucoviscidose (AAMPR), living in the Northeast and North region of the Parana State, Brazil. The data collected revealed units of meaning those were grouped in five categories: peregrination by the diagnostic and treatment: the search for the balance in belonging to the world; Cystic Fibrosis: an unknown discourse in health area; life of the families that faced the CF diagnosis; the intersubjectivity in the CF; support nets to CF: solidarity and equity. The results revealed that the families experienced periods of anger and trust related to the health professionals, meanly the physician. When referring to the period before the diagnostic, the peregrination was more traumatic when the diagnostic was presented late. The meaning of the early diagnostic in the family was a painful experience than the late one. When taking care of the disease, the families felt themselves impotent and limited due to this disease was not established by the health area. Mothers were primarily involved in the disease since the peregrination to the diagnostic and secondly, the grandmothers. The routine of the families was adapted prioritizing the care of CF and this stage was characterized by a new organization of the familiar structure. The involvement of other relatives and friends was fundamental to alleviate the denying feelings of the CF member carrier and fear of losing his child. The support nets are tools that permit the practice of solidarity and equity among families that experience the same phenomenon.