Family care for children and adolescentes with cystic fibrosis

• Autor(a) principal: Souza, Nayla Kethellyn Gonçalves de
• Data de Publicação: 2023
• Outros Autores: Petruccelli, Gabriele, Olivatto , Gabriela Marsola, Bonelli , Maria Aparecida
• Tipo de documento: Artigo
• Idioma: por
• Título da fonte: Research, Society and Development
• Texto Completo: https://rsdjournal.org/index.php/rsd/article/view/40239
• topic: Criança; Adolescente; Saúde da família; Fibrose cística; Enfermagem.; Child; Adolescent; Family health; Cystic fibrosis; Nursing.; Niño; Adolescente; Salud de la familia; Fibrosis quística; Enfermería.

The study aimed to learn about the experience of families in caring for children/adolescents with cystic fibrosis. This is a descriptive, exploratory study with a qualitative approach, carried out with nine families of children and adolescents with cystic fibrosis, living in municipalities in the state of São Paulo, from September 2020 to January 2021. Family-Centered Care was used as a theoretical concept, Bardin's Content Analysis as a methodological framework, and open online interviews as a data collection strategy. From the data analysis it was possible to apprehend three thematic categories: “Facing cystic fibrosis”; “Care for children/adolescents with cystic fibrosis and its family repercussions”; and “Support in the trajectory of care for children/adolescents with cystic fibrosis”. It was concluded that there is a life of dependency, both for the family member and the children/adolescentes with cystic fibrosis, related to the disease and emotional and physical exhaustion, and all care in their day-to-day needs to be carried out in a precise and comprehensive way. Thus, the importance of the care network, of which the multidisciplinary team and the nurse are part, is emphasized, so that the family focuses on individual care, providing a humane lifestyle, with health promotion and quality of life.