Internet Use by Parents of Children With Rare Conditions: Findings From a Study on Parents’ Web Information Needs
Open accessAbstract
BACKGROUND: Parents of children with rare conditions increasingly use the Internet to source information on their child's condition. This study reports on part of a larger study whose overall aim was to identify the Internet use by parents when seeking information on their child's rare condition, with the specific purpose of using the findings to aid in the development of a website specifically designed to meet the parents' needs. It presents findings on why these parents use the Internet, the information and support content they source, and the impact these resources have on their capacity to care for and manage their child's condition. OBJECTIVE: To (1) ascertain parents' general Internet usage patterns, (2) identify the nature of the information parents most frequently searched for, and (3) determine the effect the Internet-sourced information had on parents of children with rare conditions. METHODS: Data collection was conducted in 2 parts: Part 1 was a focus group interview (n=8) to inform the development of the questionnaire, and Part 2 was a questionnaire (Web- and paper-based). All respondents (N=128) completed the questionnaire using the Internet. RESULTS: Parents frequently and habitually used the Internet and social media to gather information on their child's condition. These Web-based resources provide parents with a parent-to-parent support platform that allows them to share their experiences and information with other parents, which, the respondents considered, improved their knowledge and understanding of their child's condition. The respondents also reported that these resources positively impacted on their decision making, care, and management of their child's condition. However, they reported receiving mixed responses when wishing to engage and share with health care professionals their Internet and social media interactions and information outcomes. CONCLUSIONS: This study adds to the emerging body of research on the Internet use by parents of children with rare conditions to source information on their child's condition. The evolving and ever increasing parent-to-parent support systems via social media are impacting on parents' capacity to manage their children. Implications for practice include health care professionals' response to this knowledge and capacity shift, and the significance of these changes when interacting with parents. The key message of this study was that parents of children with rare conditions are habitual users of the Internet to source information about their children's conditions. Social media, especially Facebook, has an increasing role in the lives of these parents for information and support. Parents' interest in information gathering and sharing includes a desire for shared dialogue with health care professionals.
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The group function is a significant reason for Facebook's popularity among parents and caregivers.
“A significant reason for Facebook’s popularity was the group function, allowing communities to create online spaces to discuss and share information [19,22].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [19]
The Introduction says Facebook groups are common for rare conditions, and the Discussion section on parents disseminating information says Facebook gave parents access to one another to exchange information and support. The paper does not establish that the group function was a significant reason for Facebook’s popularity, or isolate it from other reasons parents used Facebook. (LLM, conf=0.82)
Experimental — accuracy not yet measuredMost studies found that between 80% and 100% of parents are engaging in online support groups.
“Most studies found that between 80% and 100% of parents are engaging in online support groups [14,16,19,20].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [19]
The Results section ('Parents Disseminating Internet-Sourced Information') reports that 80.4% of 112 respondents were registered in a Web-based forum or social network group dedicated to their child’s condition. This supports one figure within the claimed range, but the paper does not establish that most studies found 80%–100% of parents engaging in online support groups; registration also does not necessarily establish active engagement. (LLM, conf=0.84)
Experimental — accuracy not yet measuredTwitter was used for similar content to Facebook posts but with less engagement.
“Notably, 2 studies [19,21] mentioned the use of Twitter (subsequently rebranded X; X Corp), often used for similar content to Facebook posts but with less engagement.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [19]
The Results (Internet Use, Table 4; page unavailable) report Twitter for 42.9% of respondents and Facebook for 94.6%, supporting that the study mentioned Twitter and found it less prevalent. The Results (Parents Disseminating Internet-Sourced Information; page unavailable) also list both as ways respondents communicated. The paper does not compare the content of Twitter and Facebook posts or measure engagement with posts, so those parts of the claim are unsupported. (LLM, conf=0.85)
Experimental — accuracy not yet measuredEmotional 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 [19]
The Discussion (Parents Disseminating Internet-Sourced Information) says that exchanging information with other parents provided support and a sense of belonging. The Introduction also says parents use Web-based groups for emotional support. The paper does not establish that seeking emotional support and connection was a main reason parents joined those networks; the count of seven studies belongs to the citing review, not this source. (LLM, conf=0.82)
Experimental — accuracy not yet measuredEngagement with social media and online groups could trigger negative emotions and increase parental anxiety due to information overload and witnessing negative outcomes for other children.
“However, several studies also noted that engagement with social media and online groups could trigger negative emotions and increase parental anxiety due to information overload and witnessing negative outcomes for other children [14,16,19,22,23,26].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [19]
The Introduction (page unavailable) says parents can be overwhelmed by the volume of online information and by case studies of children with more complex or advanced conditions. Results > Impact (page unavailable) reports that 33% of respondents said Internet-sourced information increased their anxiety. The paper does not specifically link that anxiety to social media or online groups, or describe the case studies as showing negative outcomes. (LLM, conf=0.83)
Experimental — accuracy not yet measured
Three included studies asked caregivers specific questions relating to the impact of their social media engagement.
“Three studies [16,19,23] asked caregivers specific questions relating to the impact of their social media engagement.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [19]
The Results > Impact section says the study asked parents specific questions about how Internet-sourced information affected their decisions, understanding, care, and anxiety. The Abstract > Results also discusses parents’ social media use, but the impact questions described in our copy concern Internet-sourced information generally, not specifically the impact of social media engagement. This source cannot establish the citing sentence’s count of three studies. (LLM, conf=0.82)
Experimental — accuracy not yet measuredA majority of parents and caregivers engaged in online groups by sharing information and contributions of their own.
“A majority also engaged in online groups by sharing information and contributions of their own.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [19]
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 [19]
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 [19]
Of caregivers engaging in social media support groups, a majority (58.5%, 86%, and 81%) actively contributed and shared information within the groups.
“Of those caregivers who were engaging in social media support groups, 3 studies [16,19,23] reported that a majority (58.5%, 86%, and 81%, respectively) also actively contributed and shared information within the groups.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [19]
Parental 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 [19]
Most 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 [19]
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- Authors
- Nicholl, H., Tracey, C., Begley, T., King, C., & Lynch, A. M.
- Affiliations
- Trinity College Dublin (IE)
- Corresponding author
- Lynch, Aileen M
- Venue
- Journal of Medical Internet Research
- Publisher
- JMIR Publications Inc.
- Published
- 2017-02-28
- Volume
- 19
- Issue
- 2
- Pages
- e51
- ISSN
- 1438-8871 (ISSN-L)
- PMC
- PMC5350458
- OpenAlex
- W2592163106
- Cited by
- 143
- References
- 30
- Citations by year
- 2026: 9 · 2025: 17 · 2024: 21 · 2023: 11 · 2022: 19 · 2021: 18 · 2020: 25 · 2019: 15 · 2018: 4 · 2017: 4
- FWCI
- 21.28
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- Journal of Medical Internet Research (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Arrow@dit (Dublin Institute of Technology) (acceptedVersion)
- Trinity's Access to Research Output (TARA) (Trinity College Dublin) (submittedVersion, cc-by-nc-sa)
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Social Sciences › Health › Social Media in Health Education
- Physical Sciences › Computer Science › Information Systems › Information Retrieval and Search Behavior
- Keywords
- rare diseases, internet use, online health information seeking, social media, parent-to-parent support, Facebook, health information needs, parent-professional communication, care management
- MeSH terms
- Adolescent, Adult, Child, Child, Preschool, Decision Making, Female, Humans, Male, Parents, Physician-Patient Relations, Surveys and Questionnaires, Internet, Rare Diseases, Young Adult, Health Information Exchange
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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