title: Signs of deterioration in infants discharged home following congenital heart surgery in the first year of life: a qualitative study.
abstract: OBJECTIVE
  To describe the ways in which parents recognise and make decisions about their child's symptoms following discharge home after congenital heart interventions in the first year of life and their experiences of seeking help.
  
  
  METHODS
  This was a qualitative study involving semistructured interviews with parents. Twenty-one parents were recruited to the study. Parents all had a child who had congenital heart surgery in their first year of life between September 2009 and October 2013 at one of three UK cardiac centres; the children had either died or were readmitted as an emergency following initial discharge.
  
  
  RESULTS
  Some parents were unable to identify any early warning signs. Others described symptoms of deterioration including changes in feeding and appearance, respiratory distress and subtle behavioural changes that may not be routinely highlighted to parents at discharge. Several barriers to accessing prompt medical assistance were identified including parents feeling that their concerns were not taken seriously, long wait times and lack of protocols at A&E.
  
  
  CONCLUSIONS
  Our study highlights behavioural symptoms as being a potentially underemphasised sign of deterioration and identifies a number of barriers to parents accessing support when they are concerned. It is important that parents are encouraged to seek advice at the earliest opportunity and that those health professionals at the front line have access to the information they need in order to respond in an appropriate and timely way. A role for home monitoring was also noted as potentially useful in identifying at risk children who appear clinically well.
authors.affiliation: Great Ormond Street Hospital NHS Foundation Trust, London, UK.
authors.forename: Jenifer
authors.initials: J
authors.lastname: Tregay
authors.affiliation: Great Ormond Street Hospital NHS Foundation Trust, London, UK.
authors.forename: Katherine L
authors.initials: KL
authors.lastname: Brown
authors.affiliation: Clinical Operational Research Unit, University College London, London, UK.
authors.forename: Sonya
authors.initials: S
authors.lastname: Crowe
authors.affiliation: Great Ormond Street Hospital NHS Foundation Trust, London, UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: Bull
authors.affiliation: MRC Centre of Epidemiology for Child Health, UCL Institute of Child Health, London, UK.
authors.forename: Rachel L
authors.initials: RL
authors.lastname: Knowles
authors.affiliation: Great Ormond Street Hospital NHS Foundation Trust, London, UK.
authors.forename: Liz
authors.initials: L
authors.lastname: Smith
authors.affiliation: Great Ormond Street Hospital NHS Foundation Trust, London, UK.
authors.forename: Jo
authors.initials: J
authors.lastname: Wray
mesh_terms: D003422:Critical Care; D003657:Decision Making; D042241:Early Diagnosis; D001068:Feeding and Eating Disorders / Q000175:diagnosis / Q000209:etiology; D005260:Female; D005767:Gastrointestinal Diseases / Q000175:diagnosis / Q000209:etiology; D006330:Heart Defects, Congenital / Q000601:surgery*; D006801:Humans; D007223:Infant; D018730:Infant Behavior / Q000523:psychology; D008297:Male; D010290:Parents / Q000523:psychology*; D010342:Patient Acceptance of Health Care / Q000523:psychology; D010359:Patient Readmission / Q000706:statistics & numerical data; D011183:Postoperative Complications / Q000175:diagnosis* / Q000209:etiology; D021641:Recognition, Psychology; D012127:Respiratory Distress Syndrome, Newborn / Q000175:diagnosis / Q000209:etiology
keywords: Cardiac Surgery; Comm Child Health; Monitoring; Patient perspective; Qualitative research
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