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

Abstract

Purpose: 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 the parents (sex and education level), patients’ characteristics (age group and treatment status), and healthcare context features (parents’ perception of family-centered care). Methods: 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: Results showed that parents preferred a passive-collaborative role (44.8%), followed by collaborative (27.8%), passive (20.9%) and active-collaborative (6.5%). None preferred an active role. Chi-square test showed that most of the parents preferring an active-collaborative role had higher education degrees, while those preferring a passive role had lower education degrees. Additionally, groups did not 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 scores on family-centered services compared to those preferring passive-collaborative and passive roles. Finally, no differences were found concerning providing general information scores. Conclusions: 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 when decisions are necessary in pediatric oncology context.