Internet Use Behavior Among Adolescents and Young Adults with Chronic Illnesses
Abstract
Purpose Approximately 25% of adolescents and young adults (AYA) have special healthcare needs. Transitioning from a pediatric to an adult model of healthcare is an important event but most AYA with special health care needs and their families do not receive the preparation and support they need to transition to adult care. The purpose of this scoping review was to determine how AYA use the internet for health-related information. Methods Three databases were used CINAHL, Medline and PsycINFO with search terms including adolescent, young adult, chronic illness, internet, social media. Inclusion criteria were articles focused on AYA (16-25), use of internet or social media for health-related information, published in English between 2005 and 2020. Initial search yielded 369 articles, 335 were eliminated as not meeting the inclusion criteria. Findings Of the 34 remaining, 14 were eligible for inclusion. AYA used the internet for health concerns, socializing, entertainment, homework, general information, and shopping. AYA expressed concerns about disclosing personal health information and potential misinformation on websites. Few used it to look up their diagnosed condition or talk to illness peers. AYA report they also get information from non-internet sources like providers, parents, and peers. Conclusions AYA have a need for health-related information. When planning online resources critical issues include perceived threats to privacy and security and quality of information. Online resources must address these issues so AYA consumers can have confidence in their website.
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Two excluded studies looked at adolescent and young adult patients with rare and chronic diseases.
“Two further studies [36,37], which were excluded from the review due to their focus on patients rather than parents, looked at adolescent and young adult patients with rare and chronic diseases.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [37]
Young adult patients had significant concerns regarding online privacy and misinformation.
“Young adult patients had significant concerns regarding online privacy and misinformation [36,37].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [37]
Young adult patients who used social media did so to connect with others with similar health issues and gain information on symptoms and treatments, especially in emergencies when in-person resources were unavailable.
“Those who did use social media did so with similar intentions to older adult patients: to connect with and talk to others with similar health issues and to gain information on symptoms and treatments, especially in emergencies when in-person resources were unavailable [36,37].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [37]
Privacy concerns and distrust of information online were significant concerns raised by patients regarding social media use for health information.
“Privacy concerns and distrust of information online were significant concerns raised by patients regarding social media use for health information [34,36,37].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [37]
Only a minority of young adult patients discussed their health information on social media.
“They found that only a minority of young adult patients discussed their health information on social media.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [37]
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Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review
Davis, C., Bogaert, L., Powell, J., & Low, K. (2025) · Journal of Medical Internet Research · doi:10.2196/77087 · Cited by 8 · see citing works
- Authors
- Anikputa, B. C., & Horner, S. D.
- Affiliations
- The University of Texas at Austin (US)
- Corresponding author
- Anikputa, Benedicta C.
- ORCID
- Horner, Sharon D.
- Venue
- Journal of Pediatric Nursing
- Publisher
- Elsevier BV
- Published
- 2021-09
- Volume
- 60
- Pages
- 260-266
- ISSN
- 0882-5963 (ISSN-L)
- OpenAlex
- W3191439391
- Cited by
- 9
- References
- 0
- Citations by year
- 2026: 1 · 2024: 3 · 2023: 3 · 2022: 1 · 2021: 1
- FWCI
- 0.41
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- Locations
- Journal of Pediatric Nursing (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Social Sciences › Health › Social Media in Health Education
- Keywords
- internet use, adolescents, young adults, chronic disease, health information seeking, social media, transition to adult care, special health care needs, online health information quality, privacy concerns, health misinformation, peer support
- MeSH terms
- Internet Use, Adolescent, Child, Chronic Disease, Humans, Social Behavior, Internet, Young Adult, Social Media
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