Sibling involvement in childhood chronic heart disease through a bead program.

Area of Science:

• Pediatric Cardiology
• Child Psychology
• Family-Centered Care

Background:

• Hospitalization for congenital heart conditions (CHD) significantly impacts siblings.
• Existing programs often overlook the unique needs of siblings during a child's cardiac event.
• Effective family support requires addressing the emotional and informational needs of all family members, including siblings.

Purpose of the Study:

• To evaluate the role of the Heart Beads Program in integrating siblings into the care of a child with CHD.
• To explore how sibling involvement in the Heart Beads Program impacts their understanding and family narrative.
• To identify best practices for sibling inclusion in pediatric cardiac care settings.

Main Methods:

• Qualitative interviews with parents of children undergoing cardiac care.
• Analysis of parent-reported experiences with the Heart Beads Program.
• Thematic analysis of sibling involvement in activities related to the program and the child's condition.

Main Results:

• Parents reported that the Heart Beads Program facilitated sibling inclusion through direct engagement with the beads and the child's condition.
• Siblings were involved in both understanding the cardiac condition and participating in therapeutic activities like bead collection and threading.
• The program helped shape a cohesive family narrative, acknowledging the experiences of siblings.

Conclusions:

• The Heart Beads Program effectively includes siblings in the hospital experience of a child with CHD.
• Facilitating sibling involvement in understanding and narrative creation is crucial for family well-being during pediatric cardiac events.
• Programmatic approaches like Heart Beads can enhance family-centered care for children with congenital heart conditions.