title: Psychosocial impact on families with an infant with a hypoplastic left heart syndrome during and after the interstage monitoring period - a prospective mixed-method study.
abstract: OBJECTIVE
  To investigate parents' experiences, coping ability and quality of life while monitoring their sick child with hypoplastic left heart syndrome at home.
  
  
  BACKGROUND
  Interstage home monitoring for children with hypoplastic left heart syndrome reduces interstage mortality between Norwood stages I and II. Little is known about the psychosocial impact of interstage home monitoring.
  
  
  METHODS
  Prospective mixed-method study.
  
  
  METHODS
  This study assessed the psychosocial impact on parents during interstage home monitoring. This contains for quantitative assessment the Short Form Health Survey questionnaire and the Impact of Family Scale administered one and five weeks following discharge before and after stage II. For qualitative assessment, semi-structured interviews focussing on the postdischarge coping strategies were conducted twice, five weeks after hospital discharge before and after stage II.
  
  
  RESULTS
  Ten infants (eight males) with hypoplastic left heart syndrome (n = 7) or other types of univentricular heart malformations (n = 3), and their parents (nine mother/father two-parent households, one single mother) were included. There were no interstage deaths. Mental Health Composite Summary scores were low in both parents (mothers: 40·45 ± 9·07; fathers: 40·58 ± 9·69) and lowest for the item 'vitality' (mothers: 37·0 ± 19·46; fathers: 43·12 ± 25·9) before and after stage II. Impact of Family Scale values showed higher daily and social burdens for mothers. 'Becoming a family' was the most important task as coping strategy to equilibrate the fragile emotional balance. The parents judged interstage home monitoring as a protective intervention.
  
  
  CONCLUSIONS
  Although psychosocial burden before and after stage II remains high, becoming a family is an essential experience for parents and confirms their parenthood.
  
  
  CONCLUSIONS
  Healthcare professionals must be aware of parents' needs during this vulnerable interstage period and to provide psychosocial and nursing support.
authors.affiliation: Division of Cardiology, Pediatric Heart Center, University Children's Hospital, Zurich, Switzerland.|Children's Research Center, University Children's Hospital, Zurich, Switzerland.
authors.forename: Gaby
authors.initials: G
authors.lastname: Stoffel
authors.affiliation: Nursing and MTTB, University Hospital Zürich and Institute of Nursing Science, University of Basel, Basel, Switzerland.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Spirig
authors.affiliation: Division of Cardiology, Pediatric Heart Center, University Children's Hospital, Zurich, Switzerland.|Children's Research Center, University Children's Hospital, Zurich, Switzerland.
authors.forename: Brian
authors.initials: B
authors.lastname: Stiasny
authors.affiliation: Children's Research Center, University Children's Hospital, Zurich, Switzerland.|Division of Neonatology and Intensive Care, Pediatric Heart Center, University Children's Hospital, Zurich, Switzerland.
authors.forename: Vera
authors.initials: V
authors.lastname: Bernet
authors.affiliation: Children's Research Center, University Children's Hospital, Zurich, Switzerland.|Division of Cardiovascular Surgery, Pediatric Heart Center, University Children's Hospital, Zurich, Switzerland.
authors.forename: Hitendu
authors.initials: H
authors.lastname: Dave
authors.affiliation: Division of Cardiology, Pediatric Heart Center, University Children's Hospital, Zurich, Switzerland.|Children's Research Center, University Children's Hospital, Zurich, Switzerland.
authors.forename: Walter
authors.initials: W
authors.lastname: Knirsch
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D005260:Female; D006801:Humans; D018636:Hypoplastic Left Heart Syndrome / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008991:Monitoring, Physiologic / Q000523:psychology; D010290:Parents / Q000523:psychology*; D011446:Prospective Studies; D036301:Qualitative Research; D011788:Quality of Life; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: family; hypoplastic left heart syndrome; infant; interstage monitoring; psychosocial impact; quality of life