“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
Open accessAbstract
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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Parents have reported that online connections with other families provide more practical, specific, and applicable information than that from health care providers.
“Parents have even reported that online connections with other families provide more practical, specific, and applicable information than that from health care providers [15,16].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
The Use of social media section reports that parent groups helped families manage a child’s condition and prepare questions for providers; the Discussion says such groups can help parents explore interventions and obtain services. The paper also describes gaps in information from providers, but it does not report parents comparing the information from other families as more practical, specific, and applicable than providers’ information. (LLM, conf=0.84)
Experimental — accuracy not yet measuredThree studies mentioned increased use of online communities in stressful periods, such as initial diagnosis, receipt of results, and medical procedures.
“Three studies [15,24,26] mentioned the increased use of online communities in stressful periods, such as initial diagnosis, receipt of results, and medical procedures.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
The Discussion (page not available in our copy) identifies internet and social-media use before testing, while awaiting results, and after results, and describes greater condition-specific support needs after a new diagnosis. It does not establish that use of online communities increased during those periods or report increased use around medical procedures. (LLM, conf=0.84)
Experimental — accuracy not yet measuredParents found more success in information seeking on social media compared to a simple internet search.
“One study [15] also found that parents found more success in information seeking on social media compared to a simple internet search.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
The “Use of social media” section says one parent who found no information through a simple internet search was much more successful using social media. The Abstract also says parents used Facebook groups to learn about their children’s conditions in ways that were challenging through non-social-media approaches. The specific comparison with a simple internet search, however, is reported for one parent rather than parents generally. (LLM, conf=0.84)
Experimental — accuracy not yet measuredParents are able to access information via social media wherever and whenever they need it and receive faster answers online than from health care providers.
“Three studies [14,15,22] brought focus to the accessibility of information via social media, with parents able to access it wherever and whenever they need it and receive faster answers to questions online than if they awaited input from health care providers.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
The Discussion (page unavailable) says social media can meet parents’ informational needs in real time and connect families across physical distances. That supports accessibility and timely information, but the paper does not establish that parents can access it wherever and whenever needed or receive answers faster than they would from health care providers. (LLM, conf=0.83)
Experimental — accuracy not yet measuredParental discussion of online findings with health care providers was reported by 5 studies.
“Parental discussion of online findings with health care providers was reported by 5 studies [15,19,23,24,26].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
The Discussion (page unavailable) reports that some participants encountered providers who discouraged internet use or seemed uninterested in what they found. This supports parent–provider interaction about online information, but the passages do not clearly report parents discussing specific online findings with providers. The count of five studies belongs to the citing paper’s synthesis, not to this source alone. (LLM, conf=0.75)
Experimental — accuracy not yet measured
Online findings facilitated more informed and focused conversations and allowed parents to feel more valued and heard.
“The online findings facilitated more informed and focused conversations and allowed parents to feel more valued and heard [15,26].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
In “Use of social media” (page unavailable), a parent says online-group posts helped them learn about the condition and formulate questions for providers. The Discussion (page unavailable) likewise suggests online information could help parents prepare questions and make counseling time more effective. Neither passage reports that parents felt more valued or heard. (LLM, conf=0.86)
Experimental — accuracy not yet measuredSocial isolation is common among parents of children with rare genetic diseases, especially before diagnosis.
“Social isolation is common among parents of children with rare genetic diseases, especially when they have not yet received a diagnosis, as highlighted by 3 studies [14,15,26].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
The Introduction says parents experience social isolation after a genetic diagnosis, and the Discussion describes a lack of social support among parents of children with rare diseases. The Use of social media section says lacking a diagnosis can make it harder to find condition-specific communities, but the paper does not establish that isolation is especially common before diagnosis; the Discussion instead describes greater condition-specific support needs after diagnosis. Page numbers are unavailable in our copy. (LLM, conf=0.87)
Experimental — accuracy not yet measuredExtensive information on the content of social media posts was lacking from several studies.
“Extensive information on the content of social media posts was lacking from several studies, with some acknowledging that further research is needed in this area [15].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
The Discussion (page unavailable) calls for research examining the content of social media sites, and the Limitations say this study was not designed to evaluate internet and social media use explicitly. This supports the stated research gap, but the paper does not establish that several studies lacked extensive information specifically about the content of social media posts. (LLM, conf=0.83)
Experimental — accuracy not yet measuredMost parents and caregivers discussed online information with health care providers, but some experienced negative responses.
“Most parents and caregivers discussed information they had found online with their health care providers; however, some experienced negative responses from health care professionals [14,15,19,26].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
The Discussion (page unavailable) says several participants encountered providers who discouraged internet or social media use, remained silent, or were uninterested in what parents found. The paper does not establish that most parents discussed information they found online with their providers; its Introduction (page unavailable) distinguishes searching online from discussing those searches. (LLM, conf=0.85)
Experimental — accuracy not yet measuredUse of genetic condition-specific Facebook groups and social media is more widespread than previously characterized.
“Studies also suggest that the use of genetic condition–specific Facebook groups and social media is more widespread than previously characterized [15].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
Around 5 included study cohorts were based in the United States, 1 in Canada, and 2 in Europe.
“Around 5 [14-16,24,26] study cohorts were based in the United States, 1 [22] in Canada, and 2 [19,23] in Europe.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
Nine included studies collected data using surveys or semistructured interviews to gain an understanding of parental views, mostly advertised through rare disease organizations.
“9 studies [14-16,18,19,22-24,26] collected data using surveys or semistructured interviews to gain an understanding of parental views, mostly advertised through rare disease organizations.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
Parents sought or shared practical information on caring for a child with a rare genetic disease in 9 included studies.
“Practical information on caring for a child with a rare genetic disease was sought or shared by parents in 9 [14-16,18,21-25] of the included studies.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
Emotional support seeking and connection with other families was a main reason parents joined online support networks, found in 7 reviewed studies.
“Another main reason for joining online support networks was emotional support seeking and connection with other families, as found in 7 [14-16,19,20,23,26] of the reviewed studies.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
Personal online communication with other families going through similar experiences helped parents manage emotions.
“Personal online communication with other families going through similar experiences helped parents to manage these emotions [15,20,26].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
Some providers discouraged social media use or were uninterested in discussing the topic with caregivers.
“Three studies [15,20,26] reported that some providers discouraged social media use or were uninterested in discussing the topic with caregivers.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [15]
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References 24 · Cited by 44
Research works printed but not linked: 1
- [28]28. Smith A (2015) Chapter one: a portrait of smartphone ownership. U.S. smartphone use in 2015.. http://www.pewinternet.org/2015/04/01/ chapter-one-a-portrait-of-smartphone-ownership/
- Authors
- Barton, K. S., Wingerson, A., Barzilay, J. R., & Tabor, H. K.
- Affiliations
- Seattle Children's Research Institute (US)
- University of Southern California (US)
- Stanford Medicine (US)
- Corresponding author
- Tabor, Holly K.
- Venue
- Journal of Community Genetics
- Published
- 2018-12-19
- Volume
- 10
- Issue
- 3
- Pages
- 375-383
- ISSN
- 1868-310X (ISSN-L)
- 1868-6001
- PMC
- PMC6591503
- OpenAlex
- W2905299385
- Cited by
- 44
- References
- 24
- Citations by year
- 2026: 3 · 2025: 8 · 2024: 6 · 2023: 6 · 2022: 5 · 2021: 12 · 2020: 3 · 2019: 1
- FWCI
- 6.49
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Journal of Community Genetics (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Center for Clinical and Translational Research
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Social Sciences › Health › Social Media in Health Education
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Genomics and Rare Diseases
- Keywords
- parental internet use, social media use, Facebook groups, rare genetic disorders, parental information needs, emotional support, shared decision-making, online support networks
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