title: Extended family support for parents faced with life-support decisions for extremely premature infants.
abstract: OBJECTIVE
  To outline parents' descriptions of extended family involvement and support surrounding decision making for their extremely preterm infant.
  
  
  METHODS
  Collective case study design in a prospective, descriptive, longitudinal research. Seventy-five digitally recorded interviews were done with parents before and after the birth.
  
  
  METHODS
  Fifty-four parents (40 mothers, 14 fathers).
  
  
  METHODS
  Categories of family involvement and support in the parents' decision making.
  
  
  RESULTS
  Most parents did not seek advice from family members for life-support decisions made prenatally. Instead, parents made the decision as a couple with their physician without seeking family input. Family members provided certain types of support: emotional support, advice and information, prayer, and instrumental help such as child care. Most parents described at least one way their family supported them. For postnatal and end-of-life decisions, parents were more likely to seek advice from extended family in addition to the other forms of support.
authors.forename: Karen
authors.initials: K
authors.lastname: Kavanaugh
authors.forename: Leanne M
authors.initials: LM
authors.lastname: Nantais-Smith
authors.forename: Teresa
authors.initials: T
authors.lastname: Savage
authors.forename: Stephanie Myers
authors.initials: SM
authors.lastname: Schim
authors.forename: Girija
authors.initials: G
authors.lastname: Natarajan
mesh_terms: D000328:Adult; D001293:Attitude to Death; D016022:Case-Control Studies; D003657:Decision Making; D005260:Female; D006801:Humans; D062071:Infant, Extremely Premature / Q000523:psychology*; D007231:Infant, Newborn; D008020:Life Support Care / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D011446:Prospective Studies; D012944:Social Support; D013727:Terminal Care / Q000523:psychology*
keywords: extremely premature infants; family support; parent decision making