Parents' Roles in Decision Making for Children With Cancer in the First Year of Cancer Treatment

PURPOSE: 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). CONCLUSION: 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.