title: Parents' roles in decision making for children with cancer in the first year of cancer treatment.
abstract: OBJECTIVE
  To evaluate the extent to which parents of children with cancer are involved in decision making in the ways they prefer during the first year of treatment.
  
  
  METHODS
  We conducted a cross-sectional survey of 194 parents of children with cancer (response rate, 70%) in their first year of cancer treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) and the children's physicians. We measured parents' preferred and actual roles in decision making and physician perceptions of parents' preferred roles.
  
  
  RESULTS
  Most parents (127 of 192; 66%) wanted to share responsibility for decision making with their children's physician. Although most parents (122 of 192; 64%) reported that they had their preferred role in decision making, those who did not tended to have more passive roles than they wished (47 of 70; 67%; P < .001). Parents were no more likely to hold their ideal roles in decision making when the physician accurately identified the parents' preferred role (odds ratio [OR], 1.04; P = .92). Parents were less likely to hold more passive roles than they wished in decision making when they felt that physician communication (OR, 0.39; P = .04) and information received (OR, 0.45; P = .04) had been of high quality. Parents who held more passive roles than they wished in decision making were less likely to trust their physicians' judgments (OR, 0.46; P = .03).
  
  
  CONCLUSIONS
  Most parents of children in their first year of cancer treatment participate in decision making to the extent that they wish; although, nearly one fourth hold more passive roles than desired. High-quality physician communication is associated with attainment of one's preferred role.
authors.affiliation: Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, 44 Binney St, Boston, MA 02115, USA. jennifer_mack@dfci.harvard.edu
authors.forename: Jennifer W
authors.initials: JW
authors.lastname: Mack
authors.forename: Joanne
authors.initials: J
authors.lastname: Wolfe
authors.forename: E Francis
authors.initials: EF
authors.lastname: Cook
authors.forename: Holcombe E
authors.initials: HE
authors.lastname: Grier
authors.forename: Paul D
authors.initials: PD
authors.lastname: Cleary
authors.forename: Jane C
authors.initials: JC
authors.lastname: Weeks
mesh_terms: D000293:Adolescent; D000328:Adult; D001290:Attitude; D002648:Child; D002675:Child, Preschool; D003142:Communication; D003256:Community Participation; D003657:Decision Making; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D009369:Neoplasms / Q000628:therapy*; D010290:Parents; D010465:Perception; D011368:Professional-Family Relations