Family care pathway of children with Cystic Fibrosis

Abstract

Caring for children with cystic fibrosis within the family is a complex experience that involves moments of uncertainty and hopelessness that lead to a reinvention of the self through coping and adaptation.

Objective: To explore the experience of family care in mothers of children with cystic fibrosis.

Subjects and Method: Descriptive-exploratory qualitative study design. Semi-structured interviews were conducted between January and December 2024 with caregiving mothers, selected by convenience sampling and snowball techniques. The interviews were recorded and transcribed after signing the informed consent form. The information was analyzed using content analysis techniques, and the methodological rigor criteria of qualitative research were preserved.

Results: Six women caregivers were interviewed. The analysis of the information yielded five key categories: the diagnostic trajectory, support networks, coping strategies, care dynamics, and systemic barriers. Each category intertwines emotions, thoughts, opinions, tasks, and responsibilities, ranging from uncertainty and learning to role burnout, as well as a constant struggle with institutionality.

Conclusion: Family care in the context of cystic fibrosis is not only an institutional task, but also a practice deeply marked by structural and gender inequality. However, during adversity, mothers manage to redefine their role, defending their dignity and subjectivity through the radical act of caring.