title: Important knowledge for parents of children with heart disease: parent, nurse, and physician views.
abstract: OBJECTIVE
  Parental understanding of their children's heart disease is inadequate, which may contribute to poor health outcomes. The purpose of this study was to determine what parental knowledge is important in the care of children with heart disease from the perspective of parents, nurses, and physicians.
  
  
  METHODS
  Focus groups were formed with parents of children with single ventricle congenital heart disease (CHD), biventricular CHD, and heart transplantation, and with nurses and physicians who provide care for these children. A nominal group technique was used to identify and prioritise important parental knowledge items and themes. The voting data for each theme were reported by participant type--parent, nurse, and physician--and patient diagnosis--single ventricle CHD, biventricular CHD, and heart transplantation.
  
  
  RESULTS
  The following three themes were identified as important by all groups: recognition of and response to clinical deterioration, medications, and prognosis and plan. Additional themes that were unique to specific groups included the following: medical team members and interactions (parents), tests and labs (parents), neurodevelopmental outcomes and interventions (physicians), lifelong disease requiring lifelong follow-up (physicians and nurses), and diagnosis, physiology, and interventions (single ventricle and biventricular CHD).
  
  
  CONCLUSIONS
  Parents, nurses, and physicians have both common and unique views regarding what parents should know to effectively care for their children with single ventricle CHD, biventricular CHD, or heart transplantation. Specific targeted parental education that incorporates these findings should be provided to each group. Further development of questionnaires regarding parental knowledge with appropriate content validity is warranted.
authors.affiliation: 1Cincinnati Children's Hospital Medical Center,Cincinnati,Ohio,United States of America.
authors.forename: Joshua
authors.initials: J
authors.lastname: Daily
authors.affiliation: 1Cincinnati Children's Hospital Medical Center,Cincinnati,Ohio,United States of America.
authors.forename: Mike
authors.initials: M
authors.lastname: FitzGerald
authors.affiliation: 2Institute for Policy Research,University of Cincinnati,Cincinnati,Ohio,United States of America.
authors.forename: Kimberly
authors.initials: K
authors.lastname: Downing
authors.affiliation: 1Cincinnati Children's Hospital Medical Center,Cincinnati,Ohio,United States of America.
authors.forename: Eileen
authors.initials: E
authors.lastname: King
authors.affiliation: 1Cincinnati Children's Hospital Medical Center,Cincinnati,Ohio,United States of America.
authors.forename: Javier Gonzalez
authors.initials: JG
authors.lastname: del Rey
authors.affiliation: 1Cincinnati Children's Hospital Medical Center,Cincinnati,Ohio,United States of America.
authors.forename: Richard
authors.initials: R
authors.lastname: Ittenbach
authors.affiliation: 1Cincinnati Children's Hospital Medical Center,Cincinnati,Ohio,United States of America.
authors.forename: Bradley
authors.initials: B
authors.lastname: Marino
mesh_terms: D000293:Adolescent; D000328:Adult; D001291:Attitude of Health Personnel; D002648:Child; D002675:Child, Preschool; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006330:Heart Defects, Congenital; D006801:Humans; D007223:Infant; D008297:Male; D009726:Nurses; D010290:Parents; D010820:Physicians; D011795:Surveys and Questionnaires
keywords: CHD; Parental knowledge; children; focus groups; parents