ArticleJournal of inherited metabolic disease2012
Internet use by parents of infants with positive newborn screens.
Article in Journal of inherited metabolic disease, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
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
16 citing papers in PubMed, 42 citations in OpenAlex.
- An evaluation of U.S. federal investments in newborn screening: successes, gaps, and future directions.Frontiers in public health · 2026Article
- A grounded theory study on medical students' proxy online health information seeking behavior.BMC public health · 2025Article
- Social media use by patients with hypermobile Ehlers-Danlos syndrome.Molecular genetics & genomic medicine · 2024Article
- Is Our Newborn Screening Working Well? A Literature Review of Quality Requirements for Newborn Blood Spot Screening (NBS) Infrastructure and Procedures.International journal of neonatal screening · 2023Review
- Assessing the Content Quality of Online Parental Resources about Newborn Metabolic Disease Screening: A Content Analysis.International journal of neonatal screening · 2022Article
- The Importance of Monitoring Neurodevelopmental Outcomes for Preterm Infants: A Comparison of the AIMS, GMA, Pull to Sit Maneuver and ASQ-3.Journal of clinical medicine · 2022Article
- Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study.JMIR formative research · 2021Article
- Parents' health information seeking behaviour - does the child's health status play a role?BMC family practice · 2020Article
- Electronic Health Literacy in Swiss-German Parents: Cross-Sectional Study of eHealth Literacy Scale Unidimensionality.Journal of medical Internet research · 2020Article
- "Before Facebook and before social media…we did not know anybody else that had this": parent perspectives on internet and social media use during the pediatric clinical genetic testing process.Journal of community genetics · 2019Article
- Disorders of sex development (DSD) web-based information: quality survey of DSD team websites.International journal of pediatric endocrinology · 2019Article
- Internet use of parents before attending a general pediatric outpatient clinic: does it change their information level and assessment of acute diseases?BMC pediatrics · 2016Observational
- Parental Evaluation of a Nurse Practitioner-Developed Pediatric Neurosurgery Website.JMIR research protocols · 2016Article
- Are Parents Getting it Right? A Survey of Parents' Internet Use for Children's Health Care Information.Interactive journal of medical research · 2015Article
- Portal for Families Overcoming Neurodevelopmental Disorders (PFOND): Implementation of a Software Framework for Facilitated Community Website Creation by Nontechnical Volunteers.JMIR research protocols · 2013Article
- Predictive modelling: parents' decision making to use online child health information to increase their understanding and/or diagnose or treat their child's health.BMC medical informatics and decision making · 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
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundInternet searches on health topics are common, but not enough is known about online use during serious health concerns. The aim of this study was to investigate parents' internet use and responses to online information following the referral of their newborn screen-positive infants.
methodsForty-four parents were interviewed about their internet use during their infants' evaluations for a potential metabolic disorder. Responses to open-ended questions were audio taped and transcribed. Content analysis was used in analyzing the interview data.
resultsAn overwhelming majority of parents (89%) accessed the internet and most went online before meeting with genetic providers at metabolic treatment centers. Primary and genetic providers did not routinely recommend websites to parents. Online descriptions of metabolic disorders increased parents' anxieties. Some parents allayed their distress by enlisting others to search and filter information for them and by seeking optimistic internet content about the disorders. Parents with fewer years of education were often baffled by complex disease information. Parents found limited information about treatments or what to expect during the clinical evaluations of their infants.
conclusionsThe internet is an integral part of health care and an important source of information for newborn screening parents. Parents may benefit from recommendations of credible websites and discussions of internet information with health care providers.
Indexed as
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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.