Conhecendo o portador de fibrose cística : dificuldades e possibilidades.

• Ano de defesa: 2011
• Autor(a) principal: Pimentel, Ellen Dayane Cargnin
• Tipo de documento: Dissertação
• Tipo de acesso: Acesso aberto
• Idioma: por
• Instituição de defesa: Universidade Estadual de Maringá; Brasil; Departamento de Enfermagem; Programa de Pós-Graduação em Enfermagem; UEM; Maringá, PR; Centro de Ciências da Saúde
• Palavras-chave em Português: Fibrose cística; Diagnóstico; Triagem neonatal; Doença crônica; Brasil.; Cystic fibrosis; Nursing; Diagnosis; Neonatal screening; Brazil.; Ciências da Saúde; Enfermagem
• Link de acesso: http://repositorio.uem.br:8080/jspui/handle/1/2352

Cystic fibrosis (CF) is a chronic genetic disease that greatly affects the lives of patients and relatives. Its incidence is higher among Caucasians, but in a country with such noticeable racial miscegenation, as in Brazil, prevalence data are not as linear as in other countries. There are many studies on this disease and the ways it affects families. However, as far as it is known, there are no studies that describe the daily life and the difficulties experienced by the patients in Brazil. Given the above, the purpose of this study was to analyze the characteristics and the daily life of patients with CF. This is a descriptive and exploratory study, using quantitative approach. The subjects were 65 patients with CF, and their parents (for patients younger than 18 years old). The internet was used for data collection, and the subjects were contacted on social networks such as Orkut and Facebook, or on a website for supporting relatives of patients with CF calledunidospela vidafc.org.br. Subjects were contacted online; personal e-mails were sent by those who decided to enroll as participants. Subsequently, e-mails with a questionnaire and consent were forwarded to them. After fulfilled, these documents were returned to the researcher. The study included patients from 14 states; 43 parents of disabled children, and 22 adult patients. The average age of diagnosis was five years old. All children attended school, but a significant proportion of the adults were unemployed. Most subjects were using antibiotics, pancreatic enzymes, vitamins, bronchodilators; 90% received the drugs from the National Health System; 80% had already been hospitalized. Although 27 years old was the average age of the adult patients and most of them had college education, only half of them worked. This study showed that even being possible for the CF patients to have a relatively normal life, the routine treatment, the medications, and the risk of death profoundly affects their daily lives.