ArticleThe Journal of pediatrics2024
Motivations for and against Participation in Neonatal Research: Insights from Interviews of Diverse Parents Approached for Neonatal Research in the United States.
Article in The Journal of pediatrics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
What it found
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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.
- Eligible Infants Included in Neonatal Clinical Trials and Reasons for Noninclusion: A Systematic Review.JAMA network open · 2024Pooled it
- Development and Preliminary Evaluation of a Questionnaire on Parental Informed Consent in Neonatal Research.Children (Basel, Switzerland) · 2026Article
- Determinants of Infant Participation and Non-Participation in Primary Prevention Trials.Hormone and metabolic research = Hormon- und Stoffwechselforschung = Hormones et metabolisme · 2026Article
- A quality improvement project to optimize the neonatology research experience for families.Journal of perinatology : official journal of the California Perinatal Association · 2026Article
- Facilitators and barriers in obtaining informed consent for neonatal research: a scoping review.European journal of pediatrics · 2026Article
- Piloting the better research interactions for every family (BRIEF) researcher intervention to support recruitment for a neonatal clinical trial: parent experience and infant enrollment.Journal of perinatology : official journal of the California Perinatal Association · 2025Article
- Towards better enrollment decision-making for perinatal clinical research: Reconsidering recruitment and consent processes to support family values and preferences.Seminars in perinatology · 2025Review
- Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
objectiveTo describe parents' motivations for and against participation in neonatal research, including the views of those who declined participation. STUDY
designWe performed 44 semi-structured, qualitative interviews of parents approached for neonatal research. Here we describe their motivations for and against participation.
resultsAltruism was an important reason parents chose to participate. Some hoped participation in research would benefit their infant. Burdens of participation to the family, such as transportation to follow up (distinct from risks/burdens to the infant), were often deciding factors among those who declined participation. Perceived risks to the infant were reasons against participation, but parents often did not differentiate between baseline risks and incremental risk of study participation. Concerns regarding their infant being treated like a "guinea pig" were common among those who declined. Finally, historical abuses and institutional racism were reported as important concerns by some research decliners from minoritized populations.
conclusionsWithin a diverse sample of parents approached to enroll their infant in neonatal research, motivations for and against participation emerged, which may be targets of future interventions. These motivations included reasons for participation which we may hope to encourage, such as altruism. They also included reasons against participation, which we may hope to, as feasible, eliminate, mitigate, or at least acknowledge. These findings can help clinical trialists, regulators, and funders attempting to improve neonatal research recruitment processes.
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Registered trials
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