Related Experiment Video
Updated: Nov 27, 2025
Establishment of Orthotopic Patient-derived Xenograft Models for Brain Tumors using a Stereotaxic Device
Published on: May 2, 2025
Parent Perspectives on Information-seeking, Trustworthiness, and Decision-making in High-risk Neuroblastoma
Katherine Brown1,2, Shelly Benjaminy3,4, Judy Illes2,5
1School of Population and Public Health.
Insights
Parents of children with high-risk neuroblastoma often distrust online health information. They value open communication with physicians and access to reliable, evidence-based resources for treatment decisions.
Area of Science:
- Pediatric Oncology
- Health Communication
- Decision Science
Background:
- Parents of children with high-risk neuroblastoma face complex treatment decisions.
- Information seeking is a critical component of this decision-making process.
- Trustworthiness of information sources is a primary concern for parents.
Purpose of the Study:
- To explore how parents of children with high-risk neuroblastoma integrate information from various sources into their treatment decision-making.
- To understand parents' evaluation of the trustworthiness of different information sources.
- To identify key factors influencing parental decision-making in pediatric neuroblastoma treatment.
Main Methods:
- Qualitative descriptive study utilizing in-depth, semistructured interviews.
- Purposive sampling of parents with children undergoing high-risk neuroblastoma therapy.
- Thematic analysis of interview transcripts to identify emergent themes.
Main Results:
- Parents frequently access web-based information but express distrust in its reliability and consistency.
- Open communication with healthcare providers regarding external information sources is highly valued.
- Quality of life impacts and financial/personal costs associated with travel are significant decision-making factors.
Conclusions:
- Healthcare providers must augment and contextualize information for parents regarding high-risk neuroblastoma.
- Guidance towards accurate, evidence-based, and continuously updated resources is essential.
- Supporting informed decision-making requires addressing parental concerns about information trustworthiness and practical life impacts.
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.
Related Concept Videos
01:27Nursing Ethical Principles II
Consider the following scenario, which illustrates how these principles are applied in the care of Mr. John, a fifty-year-old teacher diagnosed with metastatic liver cancer.
Initially, Mr. John's...
01:23Types of Biopharmaceutical Studies: Controlled and Non-Controlled Approaches
Non-controlled studies, commonly employed for initial exploration, lack a control group, rendering them susceptible to biases and external influences. In contrast,...
01:30Psychosurgery
Historical Development of Psychosurgery
In the 1930s, Portuguese neurologist Antonio Egas Moniz introduced a surgical procedure designed...
01:17Ethical Dilemmas I
Let us explore some examples to understand the potentially complex moral decisions nurses face.
Take the case of caring for minors, particularly in areas related to reproductive...
01:08Obedience
01:27Ethical Issues
Ethical Concerns in Healthcare: