ArticleJournal of genetic counseling2009
How parents search, interpret, and evaluate genetic information obtained from the internet.
Article in Journal of genetic counseling, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 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
15 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Pooled it
- Dynamics of Digital Support Platform Use Among Family Caregivers of Children With Disabilities: Longitudinal Study.JMIR mHealth and uHealth · 2026Article
- Experiences, Motivations, and Perceived Impact of Participation in a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study.JMIR pediatrics and parenting · 2022Article
- Genomic Health Literacy Interventions in Pediatrics: Scoping Review.Journal of medical Internet research · 2021Article
- "Doctors can read about it, they can know about it, but they've never lived with it": How parents use social media throughout the diagnostic odyssey.Journal of genetic counseling · 2021Article
- Smartphones and Text Messaging are Associated With Higher Parent Quality of Life Scores and Enrollment in Early Intervention After NICU Discharge.Clinical pediatrics · 2019Article
- "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
- Parent's use of the Internet in the search for healthcare information and subsequent impact on the doctor-patient relationship.Irish journal of medical science · 2017Article
- Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents' Web Information Needs.Journal of medical Internet research · 2017Article
- An audit of the quality of online immunisation information available to Australian parents.BMC public health · 2017Article
- "Something Extra on Chromosome 5": Parents' Understanding of Positive Prenatal Chromosomal Microarray Analysis (CMA) Results.Journal of genetic counseling · 2016Article
- Parental Evaluation of a Nurse Practitioner-Developed Pediatric Neurosurgery Website.JMIR research protocols · 2016Article
- Psychosocial Health, e-Health Literacy, and Perceptions of e-Health as Predictors and Moderators of e-Health Use Among Caregivers of Children with Special Healthcare Needs.Telemedicine journal and e-health : the official journal of the American Telemedicine Association · 2016Article
- Use of the medical information on the internet by pregnant patients with a prenatal diagnosis of neonatal disease requiring surgery.Pediatric surgery international · 2011Article
- Internet use and eHealth literacy of low-income parents whose children have special health care needs.Journal of medical Internet research · 2011Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
This study describes how parents of a child referred for genetic services searched the Internet for information, summarizes how they interpreted and evaluated the information they obtained, and identifies barriers that they encountered. Audio-taped interviews were conducted with 100 ethnically diverse families referred to a pediatric genetics clinic. After transcription, coded text was entered into a software program (QSR N6) for searching and data retrieval. Matrices were created to systematically categorize and compare families' Internet use. Eighty-three percent of families obtained Internet information about the diagnosis, the clinic visit, and/or treatment and services. Those not conducting searches lacked access, Internet experience, or a diagnostic term and had lower incomes and less education, regardless of ethnicity. Families sought information in preparation for the clinic visit but barriers to obtaining and interpreting relevant information were common. Parents' Internet searching experiences illustrate common barriers to obtaining and understanding genetic information. Identifying them can help genetic counselors facilitate parents' searches for relevant information.
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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.