Evidence map›Paper›PMID 41918021›Full record

SynthesisArchives of public health = Archives belges de sante publique2026

Experiences and perspectives of children and adolescents participating in pediatric clinical trials: a qualitative evidence synthesis.

Yiming Ren, Si Tang, Guanghe Ji, Rui Li, Jianping Liu, Ruyu Xia, Yutong Fei

Abstract readSystematic Review
In one paragraph

Synthesis in Archives of public health = Archives belges de sante publique, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed, 1 pooled it
–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

1 citing paper in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
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

7 authors.

Yiming RenGraduate School, Beijing University of Chinese Medicine, Beijing, People's Republic Of China.ORCID http://orcid.org/0000-0003-0188-0583
Si TangSchool of Traditional Chinese Medicine, Beijing University of Chinese Medicine, Beijing, People's Republic Of China.
Guanghe JiInstitute of Clinical Pharmacology, Xiyuan Hospital of China Academy of Chinese Medical Sciences, Beijing, People's Republic Of China.
Rui LiSchool of Chinese Materia Medica, Beijing University of Chinese Medicine, Beijing, People's Republic Of China.
Jianping LiuCentre for Evidence-Based Chinese Medicine, Beijing University of Chinese Medicine, Beijing, People's Republic Of China.
Ruyu XiaCentre for Evidence-Based Chinese Medicine, Beijing University of Chinese Medicine, Beijing, People's Republic Of China. xiary@bucm.edu.cn.ORCID http://orcid.org/0000-0001-9828-5195
Yutong FeiCentre for Evidence-Based Chinese Medicine, Beijing University of Chinese Medicine, Beijing, People's Republic Of China. feiyt@bucm.edu.cn.

Funding

Science and Technology Projects of Nyingchi City SYQ2024-22the Fundamental Research Funds for the Central public welfare research institutes ZYJGKX202401the key project of the National Natural Science Foundation of China 81830115
6 · The paper itself

Abstract

backgroundChildren are increasingly involved in clinical trials, yet their own perspectives on participation are often overlooked in favor of parental or professional views. Understanding children’s lived experiences is essential for improving trial design and ethical practice.

methodsWe conducted a systematic review and qualitative evidence synthesis of studies exploring children’s experiences and perspectives regarding clinical trial participation. We searched PubMed, Embase, APA PsycInfo, APA PsycArticles, CINAHL, Web of Science, and three Chinese databases from inception to January 1, 2026. Two reviewers independently screened studies, extracted data, and assessed quality. Data were synthesized using the thematic synthesis method and confidence in the findings was assessed using the GRADE-CERQual approach.

resultsA total of 56 qualitative interview studies involving 2,101 children from 15 different countries were included.The synthesis identified three overarching analytic dimensions that frame the child’s participation journey: (1) Negotiating Agency within Information Asymmetry, where children strive for control despite limited understanding; (2) Relational Autonomy in the Child-Parent-Professional Triad, highlighting that children’s decision-making is deeply embedded in social relationships; and (3) The Dynamic Balance of Burden and Altruism, where children continuously weigh personal risks against altruistic benefits. These dimensions encompassed six descriptive themes: children’s understanding of trial components; requests for personal rights; influence of other people; potential benefits; potential concerns; and the trial participation experience.

conclusionsChildren’s participation in clinical trials is not a single decision but a dynamic, relational process. The findings support a shift from protecting children from research to protecting them through ethical engagement. Researchers should adopt a stance of “ethical symmetry,” treating children’s assent with the same ethical gravity as adult consent, and facilitate “relational autonomy” by supporting the child-parent-professional triad. Tailored, age-appropriate information and continuous emotional support are critical to optimizing children’s trial experiences.

Indexed as

AdolescentChildrenExperiencePerspectiveQualitativeTrial

Identifiers

PMID41918021
PMCPMC13159288

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.