Parent Perspectives on Information-seeking, Trustworthiness, and Decision-making in High-risk Neuroblastoma

Abstract

Background: This study explores how parents of children with high-risk neuroblastoma incorporate information from multiple sources into treatment decision-making for their children as they evaluate the trustworthiness of the sources.

Methods: Following ethics board approval, parents of children with high-risk neuroblastoma were recruited through purposive sampling from a tertiary care pediatric oncology program in Vancouver, BC, Canada. Participants completed an in-depth, semistructured interview with a study member. The qualitative descriptive methodology was utilized to code interview transcripts and identify emergent themes.

Results: Nine parents of children with high-risk neuroblastoma during upfront therapy (n=4) or treatment of refractory disease (n=5) were included. Despite almost universal access of web-based information, parents acknowledged distrust in the reliability and consistency of these sources. Open communication between parents and physicians about sources of information outside the clinic and access to regulated, accurate information is highly valued. The impact on the quality of life and the costs, both financial and personal, of travel are key factors in decision-making.

Discussion: Health care providers shoulder an immense responsibility to augment and contextualize information available about high-risk neuroblastoma for parents to maximize benefit in decision-making. Health care providers should guide access to accurate, evidence-based resources that can be monitored and continuously updated.