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Published on: April 19, 2019
Parental experiences with a hospital-based bead programme for children with congenital heart disease
Valerie Wilson1, Shingisai Chando
1Nursing Research and Practice Development, The Sydney Children's Hospital Network, Westmead, NSW, Australia; The University of Technology, Sydney, NSW, Australia.
Insights
The Heart Beads program helps parents of children with congenital heart disease understand and communicate about their child's condition. This hospital-based initiative positively impacts parental experiences, though some improvements regarding bead distribution are suggested.
Area of Science:
- Pediatric Cardiology
- Patient Support Programs
- Qualitative Research
Background:
- The Heart Beads program, established in 2008, provides children with beads representing hospital procedures.
- Previous evaluations indicated therapeutic benefits but were limited by small sample sizes.
Purpose of the Study:
- To evaluate parental experiences with the hospital-based Heart Beads program for children with congenital heart disease.
- To assess the program's impact on parental understanding, acknowledgement, and overall quality of care.
Main Methods:
- A descriptive, nonexperimental evaluation study design was employed.
- Surveys were mailed to families enrolled in the Heart Beads program between July and December 2012.
- Data were analyzed using descriptive statistics to examine parental experiences.
Main Results:
- High percentages of mothers (83%) and fathers (80%) reported improved understanding of their child's condition.
- The program facilitated communication, with 80% of mothers and 58% of fathers finding it helpful.
- Parental acknowledgement by staff varied, with mothers reporting higher acknowledgement from nurses (76%) than medical staff (67%), and fathers reporting similar trends (64% nurses, 62% medical staff).
Conclusions:
- Parental experiences with the Heart Beads program differ between mothers and fathers, informing staff communication strategies.
- The program offers insights for healthcare providers to better support and acknowledge parental experiences.
- Overall parental satisfaction was positive, with a noted concern regarding consistent bead distribution to children.
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.
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