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Published on: September 16, 2009

Sibling involvement in childhood chronic heart disease through a bead program

Sarah Redshaw1, Valerie Wilson

  • 1The Children's Hospital at Westmead, Australia.

Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community
|February 7, 2012
PubMed

Insights

The Heart Beads Program helps include siblings of children with congenital heart conditions (CHD) in hospital care. This involvement aids understanding and strengthens family narratives during treatment.

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.

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