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Published on: June 6, 2020
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.
Abstract:
Health research increasingly incorporates public and patient involvement (PPI) to enhance trial inclusivity and relevance, and it is often mandated by funding and regulatory bodies. PPI boosts public engagement with trials and aligns trial objectives more closely with the priorities of the groups they aim to benefit. The Kid's Trial, an online randomised trial co-created with children, aims to help them better understand what randomised trials are, why they matter, and improve their critical thinking skills. To ensure inclusivity and relevance, we established two PPI groups: the Children's Research Advisory Group (CRAG) and the Parents' Research Advisory Group (PRAG).We recruited a representative sample of children and parents from diverse ethnic, geographic, and socioeconomic backgrounds to reflect the trial's target demographic. We engaged PPI group members through social media and email campaigns aimed at parents of children aged 7 to 12. PPI meetings were conducted online, followed set agendas, and included real-time trial updates, post-meeting feedback surveys, and polls. A PPI compensation plan was established in advance. Online interviews later captured their insights and experiences as PPI partners.Seven family units, comprised of eight children and seven parents, were recruited over 15 weeks from six countries. PPI partners shaped the trial design by contributing to website animations, aesthetic changes, and language adaptations. Interviews were analysed using reflexive thematic analysis to explore the facilitators, challenges, and outcomes of participating in our online research advisory groups.Reflections from researchers and PPI partners demonstrated that participation in the advisory groups enhanced children's learning and confidence. Many members, including children and adults, experienced unexpected positive outcomes, such as increased scientific literacy, science communication and confidence. Their involvement meaningfully shaped the trial's development and processes. This study also provides guidance for researchers engaging similar demographics in future PPI activities.
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