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Parental experiences with a hospital-based bead programme for children with congenital heart disease.

Abstract：

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.

journal_name

J Clin Nurs

journal_title

Journal of clinical nursing

authors

Wilson V,Chando S

doi

10.1111/jocn.12621

subject

Has Abstract

pub_date

2015-02-01 00:00:00

pages

439-46

issue

3-4

eissn

0962-1067

issn

1365-2702

journal_volume

pub_type

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Parental experiences with a hospital-based bead programme for children with congenital heart disease.