title: Parents' preparedness for their infants' discharge following first-stage cardiac surgery: development of a parental early warning tool.
abstract: Aim The aim of this study was to explore parental preparedness for discharge and their experiences of going home with their infant after the first-stage surgery for a functionally univentricular heart.
  
  
  BACKGROUND
  Technological advances worldwide have improved outcomes for infants with a functionally univentricular heart over the last 3 decades; however, concern remains regarding mortality in the period between the first and second stages of surgery. The implementation of home monitoring programmes for this group of infants has improved this initial inter-stage survival; however, little is known about parents' experiences of going home, their preparedness for discharge, and parents' recognition of deterioration in their fragile infant.
  
  
  METHODS
  This study was conducted in 2011-2013; eight sets of parents were consulted in the research planning stage in September, 2011, and 22 parents with children aged 0-2 years responded to an online survey during November, 2012-March, 2013. Description of categorical data and deductive thematic analysis of the open-ended questions were undertaken.
  
  
  RESULTS
  Not all parents were taught signs of deterioration or given written information specific to their baby. The following three themes emerged from the qualitative data: mixed emotions about going home, knowledge and preparedness, and support systems.
  
  
  CONCLUSIONS
  Parents are not adequately prepared for discharge and are not well equipped to recognise deterioration in their child. There is a role for greater parental education through development of an early warning tool to address the gap in parents' understanding of signs of deterioration, enabling appropriate contact and earlier management by clinicians.
authors.affiliation: 1Department of Nursing,Midwifery and Paramedic Science,Institute of Health and Society,University of Worcester,Henwick Grove,Worcester,United Kingdom.
authors.forename: Kerry L
authors.initials: KL
authors.lastname: Gaskin
authors.affiliation: 2Department of Cardiac Surgery,Birmingham Children's Hospital,Steelhouse Lane,Birmingham,United Kingdom.
authors.forename: David J
authors.initials: DJ
authors.lastname: Barron
authors.affiliation: 3Cardiac Unit,Birmingham Children's Hospital,Steelhouse Lane,Birmingham,United Kingdom.
authors.forename: Amanda
authors.initials: A
authors.lastname: Daniels
mesh_terms: D000328:Adult; D006348:Cardiac Surgical Procedures; D002675:Child, Preschool; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006699:Home Care Services / Q000592:standards*; D006801:Humans; D018636:Hypoplastic Left Heart Syndrome / Q000451:nursing* / Q000601:surgery; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000193:education* / Q000523:psychology*; D010351:Patient Discharge; D006113:United Kingdom; D055815:Young Adult
keywords: CHD; Hypoplastic left heart syndrome; family; heart defects; infants; parents; patient discharge