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Navigating Clinical Trial Decisions in Pediatric Oncology: An Integrative Review of Qualitative Studies
Anna Sparrow1, Jennifer Yost, Michelle M Kelly
1Authors' Affiliation: M. Louise Fitzpatrick College of Nursing, Villanova University, Pennsylvania.
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.
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