Lessons learned from building the kid's trial with an online children's and parents' research advisory group: a

Simone Lepage1,2, Barbara Whelan3,4, Laura Flight5

  • 1School of Nursing and Midwifery, University of Galway, 26 Upper Newcastle, Galway, H91 E3YV, Ireland. s.lepage1@universityofgalway.ie.

Insights

Public and patient involvement (PPI) in health research, like the Kid's Trial, enhances inclusivity and relevance. Engaging children and parents in advisory groups improved scientific literacy and trial design.

Area of Science:

  • Health Services Research
  • Patient and Public Involvement (PPI)
  • Pediatric Clinical Trials

Background:

  • Health research increasingly mandates public and patient involvement (PPI) for inclusivity and relevance.
  • PPI enhances public engagement and aligns trial objectives with beneficiary priorities.
  • The Kid's Trial is an online randomized trial co-created with children to improve understanding and critical thinking about trials.

Purpose of the Study:

  • To establish and evaluate the effectiveness of two PPI groups: the Children's Research Advisory Group (CRAG) and the Parents' Research Advisory Group (PRAG).
  • To ensure the inclusivity and relevance of an online randomized trial by involving children and parents from diverse backgrounds.
  • To explore the facilitators, challenges, and outcomes of PPI in online health research settings.

Main Methods:

  • Recruited a representative sample of children (aged 7-12) and parents from diverse backgrounds via social media and email campaigns.
  • Conducted online PPI meetings with set agendas, real-time updates, feedback surveys, and polls, with a pre-established compensation plan.
  • Analyzed online interview data using reflexive thematic analysis to capture PPI partners' insights and experiences.

Main Results:

  • Seven family units (eight children, seven parents) from six countries participated over 15 weeks.
  • PPI partners significantly shaped the trial design, contributing to website animations, aesthetics, and language.
  • Participation enhanced children's learning and confidence; both children and adults reported increased scientific literacy and communication skills.

Conclusions:

  • PPI activities, particularly involving children and parents in advisory groups, meaningfully shaped the trial's development and processes.
  • PPI partners experienced unexpected positive outcomes, including enhanced scientific literacy and confidence.
  • The study offers guidance for researchers on engaging diverse demographics in future PPI initiatives.

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