Enquanto o tempo passa na hospitalização: vivências das mães de crianças com fibrose cística

Abstract

Cystic Fibrosis is a genetic disease of autosomal recessive inheritance with multisystem involvement. The health care provided to children involves not only the “being and being sick”, but also the family member who accompanies them, usually the mother. Thus, care for patients with Cystic Fibrosis and their families requires a multidisciplinary approach, where the team becomes an essential element in providing care during hospitalization. We sought to understand the maternal experiences in the process of hospitalization of children with Cystic Fibrosis. This is a descriptive study, with a qualitative approach, carried out in the pediatric inpatient unit of a hospital located in Maceió, Alagoas, with mothers of children with Cystic Fibrosis. It was approved by the Ethics Committee and data collection took place in April and May 2022. A semi-structured interview was applied to the mothers in person at the unit. Data were organized and discussed according to Bardin's Content Analysis. The experience of four mothers was presented and the following categories of analysis were identified: The Family Journey and the Diagnosis of Cystic Fibrosis; While Time Passes in Hospitalization and the Maternal Vision of the Health Team in the Hospitalization Process. The life of mothers after the diagnosis of Cystic Fibrosis undergoes significant changes, from learning about the necessary care for their children to the routine of hospitalizations. None of the research participants knew the disease before the diagnosis of the first child, which contributed to the adaptation process and the shock of discovery. In the mothers' speeches, hope and faith in a good prognosis for their children stand out, and feelings of loneliness and fear in the face of the disease are observed. It is noticed that the mothers report a history of positive experiences during hospitalizations and about the multiprofessional health team of the hospital where the research was carried out. In addition, mothers have the support of the Associação Alagoana de Pais e Amigos dos Mucoviscidotics, which welcomes and gives voice to family members of children with Cystic Fibrosis. It is concluded that, given the results obtained, there is an overview of the mothers' experiences and it is necessary to disseminate information about Cystic Fibrosis in society, especially in the academic environment, as well as the training of professionals for early diagnosis and subsequent care. in a humanized and integral way to the child and the family.