Do parents of children with cancer want to participate in treatment decision-making?

Abstract

This study aimed to describe parents' preferences regarding their role in treatment decision-making when a child has cancer and examines whether their preferences were related to parents sociodemographic characteristics (sex and education level), patients' characteristics (age group and treatment status), and healthcare context features (parents' perception of family-centered care). Two hundred and twenty-eight parents of children/adolescents with cancer were recruited from two Portuguese pediatric oncology wards. Participants provided sociodemographic and clinical information. The Control Preferences Scale for Pediatrics was used to assess the parents' preferred role in treatment decision-making. The Measure of Process of Care assessed the parents' perception of family-centered care (family-centered services and providing general information subscales). Results showed that parents preferred a passive-collaborative role (45.2%), followed by collaborative (27.2%), passive (21.0%), and active-collaborative (6.6%). None preferred an active role. Chi-square test showed that the group of parents preferring a passive role had a lower proportion of more-educated parents, compared to those preferring active-collaborative or collaborative roles. Additionally, groups did not proportionally differ according to the parents' sex, patients' age, and treatment status. A multivariate analysis of variance showed that parents preferring an active-collaborative role reported lower mean scores on family-centered services compared to those preferring passive-collaborative and passive roles. Finally, no significant differences were found concerning providing general information. This study's findings may guide professionals in identifying parents' preferences regarding their participation in treatment decision-making process. Mapping their preferences may support professionals in promoting desirable levels of parental involvement in decisions in pediatric oncology context.