Sibling involvement in childhood chronic heart disease through a bead program

In interviews with parents for the evaluation of a cardiac ward programme in a children's hospital, a number of parents mentioned the role of the Heart Beads Program in including siblings in the hospitalisation of the child with congenital heart condition (CHD). Inclusion of siblings in the events surrounding the child with the cardiac condition was of two kinds: (a) touching and explaining about the beads and the child's condition and (b) involvement in collecting and threading the beads. Discussion of the needs of siblings suggests that inclusion of siblings in activities related to the care and understanding of the CHD child as well as the creation and shaping of the family narrative is important. These cases illustrate the different ways in which siblings are involved and acknowledged and how involvement can be facilitated by a programme like Heart Beads.