Family caregivers' needs for information on pediatric cystic fibrosis: A qualitative study.

This article focuses on the informational needs of family caregivers of children and adolescents with cystic fibrosis (CF) within a Patient and Family-Centered Care (PFCC) framework. Conducted in a Brazilian public hospital, the qualitative study identified that caregivers require comprehensive, clear, and timely information about CF's etiology, treatment, respiratory complications, enzyme administration, life expectancy, and lung transplantation. Caregivers rely primarily on pediatric pulmonologists but also seek informal sources such as social media and local associations, which can provide support but sometimes cause anxiety. The study highlights a gap in emotional support and detailed communication from healthcare professionals, emphasizing the importance of integrating PFCC principles—especially information sharing, emotional support, and family participation—to improve care quality and empower families managing CF.