Lessons learned from building the kid’s trial with an online children’s and parents’ research advisory group: a descriptive, qualitative study
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...
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| Format: | Article |
| Language: | English |
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BMC
2025-07-01
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| Series: | Research Involvement and Engagement |
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| Online Access: | https://doi.org/10.1186/s40900-025-00749-5 |
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| author | Simone Lepage Barbara Whelan Laura Flight Nikki Totton Declan Devane |
| author_facet | Simone Lepage Barbara Whelan Laura Flight Nikki Totton Declan Devane |
| author_sort | Simone Lepage |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-e06bd4b3ba5446ba9ac93aee0885e9c8 |
| institution | DOAJ |
| issn | 2056-7529 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj-art-e06bd4b3ba5446ba9ac93aee0885e9c82025-08-20T03:04:17ZengBMCResearch Involvement and Engagement2056-75292025-07-0111111610.1186/s40900-025-00749-5Lessons learned from building the kid’s trial with an online children’s and parents’ research advisory group: a descriptive, qualitative studySimone Lepage0Barbara Whelan1Laura Flight2Nikki Totton3Declan Devane4School of Nursing and Midwifery, University of GalwaySchool of Nursing and Midwifery, University of GalwayNational Institute for Health and Care ExcellenceSheffield Centre for Health and Related Research (SCHARR), School of Medicine and Population Health, University of Sheffield, Sheffield City CentreSchool of Nursing and Midwifery, University of GalwayAbstract 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.https://doi.org/10.1186/s40900-025-00749-5Patient and public involvementQualitative studyReflexive thematic analysisOnline advisory groupsChildren’s and parents’ research advisory groupsCRAG |
| spellingShingle | Simone Lepage Barbara Whelan Laura Flight Nikki Totton Declan Devane Lessons learned from building the kid’s trial with an online children’s and parents’ research advisory group: a descriptive, qualitative study Research Involvement and Engagement Patient and public involvement Qualitative study Reflexive thematic analysis Online advisory groups Children’s and parents’ research advisory groups CRAG |
| title | Lessons learned from building the kid’s trial with an online children’s and parents’ research advisory group: a descriptive, qualitative study |
| title_full | Lessons learned from building the kid’s trial with an online children’s and parents’ research advisory group: a descriptive, qualitative study |
| title_fullStr | Lessons learned from building the kid’s trial with an online children’s and parents’ research advisory group: a descriptive, qualitative study |
| title_full_unstemmed | Lessons learned from building the kid’s trial with an online children’s and parents’ research advisory group: a descriptive, qualitative study |
| title_short | Lessons learned from building the kid’s trial with an online children’s and parents’ research advisory group: a descriptive, qualitative study |
| title_sort | lessons learned from building the kid s trial with an online children s and parents research advisory group a descriptive qualitative study |
| topic | Patient and public involvement Qualitative study Reflexive thematic analysis Online advisory groups Children’s and parents’ research advisory groups CRAG |
| url | https://doi.org/10.1186/s40900-025-00749-5 |
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