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Assent Described: Exploring Perspectives From the Inside.

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Adolescents and parents in oncology research often overestimate their understanding of informed consent and assent. Trust in physicians plays a key role in their experience.

Keywords:
AdolescentAssentInformed consentOncology research

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Area of Science:

  • Pediatric Oncology
  • Clinical Research Ethics
  • Informed Consent

Background:

  • Informed consent and assent are critical ethical components in pediatric oncology research.
  • Understanding participant perspectives is crucial for improving research processes.

Purpose of the Study:

  • To describe the informed consent and assent experience for oncology research.
  • To capture the perspectives of adolescent participants, their parents, and physician providers.

Main Methods:

  • Pilot use of the Quality of Informed Consent Questionnaire (QuIC) with adolescents.
  • Semi-structured interviews with adolescents, parents, and physicians post-discussion and weeks later.
  • Mixed-methods descriptive study design.

Main Results:

  • Adolescents and parents demonstrated lower objective understanding of informed consent/assent elements (QuIC Part A vs. B).
  • Qualitative data revealed poor recall of key discussion details, aligning with objective understanding findings.
  • A strong trust in physician providers appeared to mitigate the gap between perceived and actual understanding.

Conclusions:

  • Adolescents and parents may feel more informed about oncology research than they objectively are.
  • Trust in healthcare providers is a significant factor in the informed consent experience.
  • Further research is needed to explore participant values and optimize the delivery of informed consent information.