title: Going home after infant cardiac surgery: a UK qualitative study.
abstract: OBJECTIVE
  To qualitatively assess the discharge processes and postdischarge care in the community for infants discharged after congenital heart interventions in the first year of life.
  
  
  METHODS
  Qualitative study using semistructured interviews and Framework Analysis.
  
  
  METHODS
  UK specialist cardiac centres and the services their patients are discharged to.
  
  
  METHODS
  Twenty-five cardiologists and nurses from tertiary centres, 11 primary and secondary health professionals and 20 parents of children who had either died after discharge or had needed emergency readmission.
  
  
  RESULTS
  Participants indicated that going home with an infant after cardiac intervention represents a major challenge for parents and professionals. Although there were reported examples of good care, difficulties are exacerbated by inconsistent pathways and potential loss of information between the multiple teams involved. Written documentation from tertiary centres frequently lacks crucial contact information and contains too many specialist terms. Non-tertiary professionals and parents may not hold the information required to respond appropriately when an infant deteriorates, this contributing to the stressful experience of managing these infants at home. Where they exist, the content of formal 'home monitoring pathways' varies nationally, and families can find this onerous.
  
  
  CONCLUSIONS
  Service improvements are needed for infants going home after cardiac intervention in the UK, focusing especially on enhancing mechanisms for effective transfer of information outside the tertiary centre and processes to assist with monitoring and triage of vulnerable infants in the community by primary and secondary care professionals. At present there is no routine audit for this stage of the patient journey.
authors.affiliation: Cardiac Unit, Great Ormond Street Hospital NHS Foundation Trust, London UK.
authors.forename: Jenifer
authors.initials: J
authors.lastname: Tregay
authors.affiliation: Cardiac Unit, Great Ormond Street Hospital NHS Foundation Trust, London UK.
authors.forename: Jo
authors.initials: J
authors.lastname: Wray
authors.affiliation: Clinical Operational Research Unit, University College London, London, UK.
authors.forename: Sonya
authors.initials: S
authors.lastname: Crowe
authors.affiliation: Population, Policy and Practice Programme, UCL Institute of Child Health, London UK.
authors.forename: Rachel
authors.initials: R
authors.lastname: Knowles
authors.affiliation: Paediatric Cardiac Unit, Royal Brompton and Harefield Hospitals NHS Trust, London, UK Royal National Heart and Lung Institute, Imperial College, London UK.
authors.forename: Piers
authors.initials: P
authors.lastname: Daubeney
authors.affiliation: Paediatric Cardiac Unit, Royal Brompton and Harefield Hospitals NHS Trust, London, UK.
authors.forename: Rodney
authors.initials: R
authors.lastname: Franklin
authors.affiliation: Cardiac Surgery Department, Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK.
authors.forename: David
authors.initials: D
authors.lastname: Barron
authors.affiliation: Primary Care Department, Queen Mary's University, London UK.
authors.forename: Sally
authors.initials: S
authors.lastname: Hull
authors.affiliation: Department of Paediatrics, Northampton General Hospital NHS Trust, Northampton UK.
authors.forename: Nick
authors.initials: N
authors.lastname: Barnes
authors.affiliation: Cardiac Unit, Great Ormond Street Hospital NHS Foundation Trust, London UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: Bull
authors.affiliation: Cardiac Unit, Great Ormond Street Hospital NHS Foundation Trust, London UK.
authors.forename: Katherine L
authors.initials: KL
authors.lastname: Brown
mesh_terms: D006348:Cardiac Surgical Procedures; D002648:Child; D002675:Child, Preschool; D003266:Continuity of Patient Care / Q000458:organization & administration; D005260:Female; D006330:Heart Defects, Congenital / Q000601:surgery*; D006699:Home Care Services; D006801:Humans; D007223:Infant; D008297:Male; D010351:Patient Discharge; D036301:Qualitative Research; D006113:United Kingdom
keywords: Cardiac; Cardiology; Community; Paediatric; Surveillance
references.citation: Ann Thorac Surg. 2012 Aug;94(2):564-71; discussion 571-2
references.pmid: 22704799
references.citation: Open Heart. 2015 Feb 14;2(1):e000157
references.pmid: 25893099
references.citation: Congenit Heart Dis. 2009 Sep-Oct;4(5):329-37
references.pmid: 19740187
references.citation: Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2004;7:32-8
references.pmid: 15283350
references.citation: Eur J Cardiothorac Surg. 2012 May;41(5):1013-8
references.pmid: 22219467
references.citation: J Thorac Cardiovasc Surg. 2011 Oct;142(4):855-60
references.pmid: 21397261
references.citation: J Thorac Cardiovasc Surg. 2011 Dec;142(6):1358-66
references.pmid: 21703635
references.citation: Arch Dis Child. 2016 Oct;101(10):902-8
references.pmid: 26823534
references.citation: Heart. 2008 Mar;94(3):342-8
references.pmid: 17646196
references.citation: J Paediatr Child Health. 2014 Oct;50(10):E39-44
references.pmid: 23199298
references.citation: BMC Med Res Methodol. 2013;13:117
references.pmid: 24047204