ArticleArchives of disease in childhood. Fetal and neonatal edition2005
What factors are important to parents making decisions about neonatal research?
Article in Archives of disease in childhood. Fetal and neonatal edition, 2005. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 5 of them syntheses 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
22 citing papers in PubMed, 5 syntheses or guidelines pooled it.
- Parental Views of Facilitators and Barriers to Research Participation: Systematic Review.Pediatrics · 2023Pooled it
- Pooled it
- Trial Characteristics That Affect Parental Consent in Neonatal Drug Trials.American journal of perinatology · 2019Pooled it
- Motivations of children and their parents to participate in drug research: a systematic review.European journal of pediatrics · 2016Pooled it
- Pooled it
- Understanding parents' decision-making on participation in clinical trials in children's heart surgery: a qualitative study.BMJ open · 2021Trial
- Two speeds of increasing milk feeds for very preterm or very low-birthweight infants: the SIFT RCT.Health technology assessment (Winchester, England) · 2020Trial
- Trial
- Parental Attitudes toward Consent for Music Intervention Studies in Preterm Infants: A Cross-Sectional Study.International journal of environmental research and public health · 2021Article
- Educating Parents About Pediatric Research: Children and Clinical Studies Website Qualitative Evaluation.Qualitative health research · 2016Article
- Article
- Parent perspectives on decisions to participate in a phase I hepatocyte transplant trial.Pediatric transplantation · 2014Article
- Challenges and successes of recruitment in the "angiotensin-converting enzyme inhibition in infants with single ventricle trial" of the Pediatric Heart Network.Cardiology in the young · 2013Article
- Article
- Factors affecting consent in pediatric critical care research.Intensive care medicine · 2012Article
- Children and clinical studies: the National Heart, Lung, and Blood Institute's new multimedia resource for pediatric research.Journal of the American College of Cardiology · 2009Article
- Parental perception of time and decision-making in neonatal research.Journal of perinatology : official journal of the California Perinatal Association · 2009Article
- How do parents experience being asked to enter a child in a randomised controlled trial?BMC medical ethics · 2009Article
- A thematic analysis of factors influencing recruitment to maternal and perinatal trials.BMC pregnancy and childbirth · 2008Review
- Consent for neonatal research.Archives of disease in childhood. Fetal and neonatal edition · 2006Review
Corrections and comments
- Commented on by
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAlthough parents of neonates with congenital heart disease are often asked permission for their neonates to participate in research studies, little is known about the factors parents consider when making these decisions.
objectiveTo determine the reasons for parents' decisions about participation in research studies.
methodsQualitative analysis of the unsolicited comments of 34 parents regarding reasons for agreeing or declining to participate in research studies. Parents' comments were offered spontaneously during interviews about clinical care decisions for neonates with congenital heart disease.
resultsParents cited five types of reason for or against permitting their newborn to participate in research studies: societal benefit (n = 18), individual benefit for their infant (n = 16), risk of study participation (n = 10), perception that participation posed no harm (n = 9), and anti-experimentation views (n = 4).
conclusionAddressing parental decision making in the light of these reasons could enhance the parental permission process for parents of critically ill neonates.
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.