Parental experiences with a hospital-based bead programme for children with congenital heart disease
Aims and objectives: To present survey findings on parental experiences with a hospital-based bead programme for children with congenital heart disease.
Background: The Heart Beads programme commenced at a paediatric hospital in Australia in 2008. Children enrolled in the programme are awarded a distinctive bead for every procedure/treatment they have while in hospital. A previous evaluation study on the programme revealed that the beads are therapeutic for the child and parents; however, due to a small sample size, the results were representative of the experiences of a small number of families who participated in the programme.
Design: This was an evaluation study which employed a nonexperimental descriptive design.
Methods: Surveys were mailed to all eligible families who enrolled in the programme. Data collection occurred between July-December 2012. Questions on parental experiences with the Heart Beads programme were divided into three categories: understanding, acknowledgement and quality. Descriptive statistics were obtained and analysed.
Results/findings: One hundred and sixty-two mothers and 136 fathers responded to the survey. Heart Beads assisted mothers (83%) and fathers (80%) with understanding their child's condition and helped them with communication (mothers 80%, fathers 58%). The majority of fathers felt that their experience was acknowledged by nursing staff (64%) and medical staff (62%), while mothers indicated a higher response from nurses (76%) compared to medical staff (67%). Overall, parents rated the programme positively; however, there was some concern that children at times missed out on beads.
Conclusion: Understanding how mothers and fathers experience the programme differently can guide staff in their communication with parents and inform future initiatives.
Relevance to clinical practice: The Heart Beads help nurses understand how parents are experiencing care and ways in which they can provide support and acknowledgement of the parent's experience.