Evidence map›Paper›PMID 40598426›Full record

ArticleResearch involvement and engagement2025

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

Simone Lepage, Barbara Whelan, Laura Flight, Nikki Totton, Declan Devane

Abstract read
In one paragraph

Article in Research involvement and engagement, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors.

Simone LepageSchool of Nursing and Midwifery, University of Galway, 26 Upper Newcastle, Galway, H91 E3YV, Ireland. s.lepage1@universityofgalway.ie.
Barbara WhelanSchool of Nursing and Midwifery, University of Galway, 26 Upper Newcastle, Galway, H91 E3YV, Ireland.
Laura FlightNational Institute for Health and Care Excellence, Level 1A, City Tower, Piccadilly, Manchester, M1 4BT, UK.
Nikki TottonSheffield Centre for Health and Related Research (SCHARR), School of Medicine and Population Health, University of Sheffield, Sheffield City Centre, 30 Regent St, Sheffield, S1 4DA, UK.
Declan DevaneSchool of Nursing and Midwifery, University of Galway, 26 Upper Newcastle, Galway, H91 E3YV, Ireland.

Funding

Health Research Board HRB-TMRN-2021-001
6 · The paper itself

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.

Indexed as

Children’s and parents’ research advisory groupsCRAGOnline advisory groupsPatient and public involvementQualitative studyReflexive thematic analysis

Identifiers

PMID40598426
PMCPMC12220250

What OpenQuestion holds

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LicenceCC BY-NC-ND
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.