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

Cystic fibrosis (CF) affects not just patients but also their families, highlighting the need for a comprehensive care approach. This descriptive qualitative study aimed to explore the informational needs of family caregivers of children with CF, focusing on how these needs can be addressed within a Patient and Family-Centered Care (PFCC) framework. The study was conducted at a public hospital in Brazil. Thirteen caregivers were interviewed, and their responses were analyzed using content analysis guided by PFCC principles. Analysis revealed three primary themes: Types of Information for Family Caregivers of Children and Adolescents with CF; sources of Information for Family caregivers of Children and Adolescents with CF; and Beyond Information: the need for emotional support and family-centered care in CF management. Caregivers sought comprehensive information about CF management from healthcare professionals and informal sources like social media. Our findings emphasize the diverse and evolving informational needs of family caregivers. Overall, this study underscores the necessity of incorporating PFCC principles, especially those addressing information sharing, in managing CF, extending beyond medical treatment to include emotional support and active family participation in care and decision-making processes.