ArticleJournal of community genetics2019
"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.
Article in Journal of community genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers.
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.
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Who cites it
22 citing papers in PubMed.
- Patient and Family Perspectives on Generative AI Tools in Rare Diseases: Exploratory Mixed Methods Online Survey.Journal of participatory medicine · 2026Article
- Lived Experiences of Patients With Rare Diseases and Healthcare System Barriers: A Phenomenological Study.Journal of nursing management · 2026Article
- Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review.Journal of medical Internet research · 2025Article
- Parental Use of Social Media and the Internet in the Context of Their Child's Genetic Neurodevelopmental Disorder: Mixed Methods Study Nested in the GenROC Cohort Study.JMIR pediatrics and parenting · 2025Article
- Exploring the role of digital tools in rare disease management: An interview-based study.Journal of genetic counseling · 2025Article
- Parenting Information on Social Media: Systematic Literature Review.JMIR pediatrics and parenting · 2024Review
- Social media use by patients with hypermobile Ehlers-Danlos syndrome.Molecular genetics & genomic medicine · 2024Article
- Factors affecting the ability of patients with complex vascular anomalies to navigate the healthcare system.Orphanet journal of rare diseases · 2024Article
- The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis.JMIR infodemiology · 2024Article
- Social Media Content Analysis of Public and Private Glucose-6-Phosphate Dehydrogenase (G6PD) Deficiency Facebook Groups.Acta medica Philippina · 2024Article
- What matters to parents? A scoping review of parents' service experiences and needs regarding genetic testing for rare diseases.European journal of human genetics : EJHG · 2023Article
- Never "totally prepared": Support groups on helping families prepare for a child with a genetic condition.Journal of community genetics · 2023Article
- Perspectives of People With Cancer or Hereditary Cancer Risk on the Use and Value of Online Peer Support.Journal of patient-centered research and reviews · 2023Article
- Factors affecting pathways to care for children and adolescents with complex vascular malformations: parental perspectives.Orphanet journal of rare diseases · 2022Article
- Exploring Parent Support Needs during the Newborn Hearing Diagnosis Pathway.Journal of clinical medicine · 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
- Rare disease patient matchmaking: development and outcomes of an internet case-finding strategy in the Undiagnosed Diseases Network.Orphanet journal of rare diseases · 2021Article
- Patient and family social media use surrounding a novel treatment for a rare genetic disease: a qualitative interview study.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- A Bibliometric Analysis of the Health Field Regarding Social Networks and Young People.International journal of environmental research and public health · 2019Article
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.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Parents of children who undergo clinical genetic testing have significant informational and emotional support needs at different stages of the testing process. We analyzed parent views about use of both the internet and social media to help meet these needs. We interviewed 20 parents of children who underwent clinical genetic testing and analyzed transcripts to identify themes related to internet and social media use. Parents described using the internet to search for information at three stages of the genetic testing process: before testing, pending results return, and after results return. Each stage corresponded to different information vacuums and needs. Parents also described using condition-specific Facebook groups to learn more about their child's condition and to find support networks of families with similar experiences in ways that were challenging using non-social media approaches. Both the internet and social media play important roles in meeting informational and support needs in pediatric genetic testing, especially for rare conditions. Providers should consider engaging parents at different stages of the testing process about their use of the internet and social media, and consider directing them to vetted sites and groups as part of shared decision making and to improve satisfaction and outcomes.
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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.