title: Parental decision making regarding treatment of hypoplastic left heart syndrome.
abstract: Parents of children diagnosed with a complex congenital heart anomaly such as hypoplastic left heart syndrome (HLHS) are faced with the challenge of choosing the best treatment option for their children. Parents must decide among options of compassionate care, palliative reconstructive surgery, or neonatal cardiac transplantation, and additionally with antenatal diagnosis must decide regarding continuation of pregnancy. With improved survival rates yet persistent morbidities following the Norwood surgical approach for HLHS, controversy remains whether parents should be counseled on all treatment options as evidenced by research that articulates the varied opinions of health care providers. The parents' perspective is less well researched. In this study, interview data from parents who chose the Norwood-Sano surgical option were analyzed to provide insight into the various treatment options they were given following diagnosis of HLHS in their children and how they came to choose the surgical palliation option.
authors.affiliation: Alberta Health Services, Northern Alberta Neonatal Intensive Care Program, Edmonton, Alberta, Canada.
authors.forename: Marcia K
authors.initials: MK
authors.lastname: Ellinger
authors.forename: Gwen R
authors.initials: GR
authors.lastname: Rempel
mesh_terms: D000328:Adult; D001021:Aortic Valve / Q000601:surgery; D003657:Decision Making; D005260:Female; D019918:Heart Valve Prosthesis Implantation / Q000523:psychology*; D006801:Humans; D018636:Hypoplastic Left Heart Syndrome / Q000523:psychology* / Q000601:surgery*; D007231:Infant, Newborn; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010496:Pericardium / Q000637:transplantation; D011651:Pulmonary Artery / Q000601:surgery; D011795:Surveys and Questionnaires; D055815:Young Adult