ArticleArchives of disease in childhood. Fetal and neonatal edition2004
Neonatal research: the parental perspective.
Article in Archives of disease in childhood. Fetal and neonatal edition, 2004. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 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
34 citing papers in PubMed, 5 syntheses or guidelines pooled it.
- Participants' understanding of informed consent in clinical trials: A systematic review and updated meta-analysis.PloS one · 2024Pooled it
- Pooled it
- Trial Characteristics That Affect Parental Consent in Neonatal Drug Trials.American journal of perinatology · 2019Pooled it
- Pooled it
- Participants' understanding of informed consent in clinical trials over three decades: systematic review and meta-analysis.Bulletin of the World Health Organization · 2015Pooled it
- Two speeds of increasing milk feeds for very preterm or very low-birthweight infants: the SIFT RCT.Health technology assessment (Winchester, England) · 2020Trial
- Permission form synopses to improve parents' understanding of research: a randomized trial.Journal of perinatology : official journal of the California Perinatal Association · 2017Trial
- Trial
- A quality improvement project to optimize the neonatology research experience for families.Journal of perinatology : official journal of the California Perinatal Association · 2026Article
- Article
- Neonatal pneumocephalus secondary to meningitis: a case report and literature review.BMC pediatrics · 2025Review
- Facilitators and barriers for parental consent to pediatric emergency research.Pediatric research · 2022Article
- Are we enrolling representative cohorts of premature infants in our clinical trials?Journal of perinatology : official journal of the California Perinatal Association · 2022Article
- Article
- Article
- Ethical and scientific considerations for patient enrollment into concurrent clinical trials.Trials · 2014Review
- Mothers of babies enrolled in a randomized trial immediately after birth report a positive experience.Journal of perinatology : official journal of the California Perinatal Association · 2014Article
- Pediatric clinical trials.Perspectives in clinical research · 2013Article
- The use of newborn screening dried blood spots for research: the parental perspective.Journal of bioethical inquiry · 2012Article
- Psychological effects of false-positive results in expanded newborn screening in China.PloS one · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo investigate the recollections of parents consenting for their infants to be research subjects and determine their views about the need for consent. SUBJECTS: Parents of 154 sick newborn infants enrolled in a randomised trial in the early neonatal period. All parents had given written consent and received printed information.
methodsA questionnaire and accompanying letter was sent to the parental home 18 months later. Non-responders were sent a further questionnaire and letter.
resultsResponse rate was 64% (99/154). Some respondents (12%) did not remember being asked to consent to their baby joining a study, and a further 6% were unsure. Most of the respondents (79%) were happy, 13% neutral, and 8% unhappy with their decision to give consent. None felt heavy pressure to agree. Entering the trial caused 24% of respondents to feel more anxious, 56% neutral, and 20% less anxious about their baby. Most of the respondents (83%) would be unhappy to forgo the consent process for trials passed by the institutional ethics committee.
conclusionsA significant proportion of parents who give written consent for a trial in the early neonatal period do not later remember having done so. Parents who have had experience of neonatal research would be unhappy for their baby to be enrolled in a study that had ethics committee approval without their consent being obtained.
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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.