title: Parental experiences with a hospital-based bead programme for children with congenital heart disease.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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
  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.
  
  
  CONCLUSIONS
  Understanding how mothers and fathers experience the programme differently can guide staff in their communication with parents and inform future initiatives.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Nursing Research and Practice Development, The Sydney Children's Hospital Network, Westmead, NSW, Australia; The University of Technology, Sydney, NSW, Australia.
authors.forename: Valerie
authors.initials: V
authors.lastname: Wilson
authors.forename: Shingisai
authors.initials: S
authors.lastname: Chando
mesh_terms: D000328:Adult; D001315:Australia; D002648:Child; D002675:Child, Preschool; D003142:Communication; D066279:Courage; D005220:Fathers / Q000523:psychology*; D005260:Female; D006330:Heart Defects, Congenital / Q000523:psychology* / Q000628:therapy*; D006760:Hospitalization; D006761:Hospitals; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: beads programme; congenital heart disease; evaluation; family-centred care; nursing; paediatric; parents