How to Maximize Children's Involvement in Non-therapeutic Research-Lessons Learnt From EFFECTOR

Area of Science:

• Pediatric Research
• Clinical Trials
• Child Psychology

Background:

• Children are a vulnerable population in research, particularly in non-therapeutic studies.
• Increasing emphasis is placed on children's autonomy in research decision-making and their procedural experiences.
• Ethical considerations in pediatric research necessitate tailored approaches to ensure participant well-being and engagement.

Purpose of the Study:

• To describe strategies for enhancing child participation in a long-term, non-therapeutic follow-up study.
• To evaluate the effectiveness of child-centered communication methods in pediatric research.
• To share experiences from the EFFECTOR study regarding child involvement in research.

Main Methods:

• Implementation of a superhero theme across all study materials and procedures.
• Development of visually engaging assent forms and informational videos for children.
• Utilizing child-friendly incentives such as sticker diplomas and superhero capes.
• Involving children in decision-making throughout the research process.

Main Results:

• A superhero theme proved effective in engaging children across a wide age range.
• Child-centered communication strategies led to satisfactory participation rates.
• The use of visually appealing materials and age-appropriate rewards enhanced the research experience.
• Active involvement of children in decision-making fostered a positive research environment.

Conclusions:

• Child-friendly and adequate communication is crucial for motivating participation in long-term pediatric research.
• A superhero theme offers a simple and adaptable framework for engaging children in research.
• Successful pediatric research relies on prioritizing the child's perspective and experience.