Peer-reviewed article
Navigating Clinical Trial Decisions in Pediatric Oncology: An Integrative Review of Qualitative Studies.
Sparrow A, Yost J, Kelly MM ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This integrative review of 26 qualitative studies examines how families decide whether to enroll children with cancer in clinical trials. The research found that enrollment decisions are shaped by emotional distress, hope, trust in clinicians, relationships with healthcare providers, and practical barriers—often more than by clinical information alone. Adolescents often wanted more involvement in these decisions but were sometimes excluded. The review highlights tensions between hope and full understanding, and recommends improved communication, greater adolescent participation, and attention to practical barriers.
Key points
- Six main themes influenced trial decisions: emotional distress and vulnerability, altruism and meaning-making, therapeutic risks and benefits, relationships and power dynamics, communication, and systemic barriers
- Families often enrolled during emotional distress, with hope and trust in clinicians sometimes influencing decisions as much as clinical information
- Adolescents wanted more involvement in trial decisions but were sometimes sidelined by clinicians and caregivers
- Trial enrollment is embedded in emotional, relational, and structural contexts that complicate informed consent
- Recommendations include staged plain-language discussions, active inclusion of adolescents, and proactive attention to logistical burdens
Limitations
The review synthesizes qualitative studies on decision-making processes rather than evaluating trial outcomes; most evidence is from Western contexts and predates the influence of social media on family decision-making. It cannot tell us which approaches actually improve informed consent or trial enrollment rates.
Abstract
Background Pediatric cancer clinical trials are key to advancing treatment and improving survival rates. However, participation relies on complex family decision-making influenced by emotional, relational, and systemic factors. Understanding these influences is crucial for supporting informed decision-making processes. Objective To synthesize the qualitative evidence on influencers of the decision to pursue treatment in a pediatric cancer clinical trial. Methods Following Whittemore and Knafl's framework, databases were systematically searched for qualitative studies on decision-making regarding trial participation in pediatric cancer populations. Twenty-six studies were included. Data were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument tool, appraised with the Critical Appraisal Skills Programme Qualitative Checklist, and synthesized. Results Included studies examined the perspectives of patients, caregivers, and clinicians. Six main themes emerged: emotional distress and vulnerability, altruism and meaning-making, therapeutic risks and benefits, relationships and power dynamics, communication, and systemic barriers. Families often described trial enrollment as happening during emotional distress, with hope and trust in clinicians sometimes influencing decisions as much as clinical information. Adolescents wanted more involvement but were sometimes sidelined. Conclusions Trial decisions are embedded in emotional, relational, and structural contexts that complicate informed consent. Findings highlight tensions between hope and understanding, and voluntariness and trust. Implications for oncology nursing practice Clinical care should prioritize staged, plain-language, developmentally appropriate trial discussions, active inclusion of adolescents, and proactive attention to logistical burdens. Much existing evidence predates the rise of social media and remains limited to Western contexts. New research must explore digital influences, global experiences, and child-centered methods to better inform equitable, family-centered trial enrollment practices.