ArticleEthics & human research2020
The Importance of Engaging Children in Research Decision-Making: A Preliminary Mixed-Methods Study.
Article in Ethics & human research, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 8 papers, 1 of them a synthesis that pooled 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.
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.
Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A Health-Related Digital Ecological Momentary Assessment in Children (Aged 5- 11 Years): Systematic Review.Journal of medical Internet research · 2026Pooled it
- Evaluation of an Interactive, Educational Website Developed for Adolescents to Learn About Pediatric Clinical Trials: DigiKnowIt News.Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & PractitionersTrial
- A scoping review on adaptations incorporated into decision aids for children and adolescents (C&A) cohorts.Translational pediatrics · 2025Review
- Introducing youth to clinical research: Development and pilot implementation of a children's activity book.Journal of clinical and translational science · 2025Article
- Setting the research agenda: involving parents in research on children who are HIV-free.Journal of the International AIDS Society · 2023Article
- Ethical concerns when recruiting children with cancer for research: Swedish healthcare professionals' perceptions and experiences.BMC medical ethics · 2023Article
- Lessons Learned with a Triad of Stakeholder Advisory Boards: Working with Adolescents, Mothers, and Clinicians to Design the TRUST Study.Children (Basel, Switzerland) · 2023Article
- Creating a pediatric advisory board for engaging youth in pediatric health research: A case study.Journal of clinical and translational science · 2021Article
Corrections and comments
- Erratum issuedERRATUM.2020
Authors and funding
7 authors.
Funding
Abstract
Studies demonstrate deficiencies in parents' and children's comprehension of research and lack of child engagement in research decision-making. We conducted a cross-sectional and interview-based study of 31 parent-child dyads to describe decision-making preferences, experiences, and comprehension of parents and children participating in research. Parents and children reported that parents played a greater role in decisions about research participation than either parents or children preferred. The likelihood of child participation was associated with the extent of input the parent permitted the child to have in the decision-making process, the child's comprehension, whether the study team asked the child about participation, whether the child read study-related materials, the parent's marital status, and the child's race. Children had lower comprehension than adults. Comprehension was related to age, education, verbal intelligence, and reading of study-related information. Parent understanding was associated with prospect for benefit and illness severity. Child participation may be improved by increasing parent-child communication, emphasizing important relational roles between parent and child, respecting the developing autonomy of the child, increasing engagement with the study team, providing appropriate reading materials, and assessing comprehension.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
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.