ArticleJournal of the American Medical Informatics Association : JAMIA2013
"Not all my friends need to know": a qualitative study of teenage patients, privacy, and social media.
Article in Journal of the American Medical Informatics Association : JAMIA, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers, 2 of them syntheses that pooled it.
What it found
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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
33 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- A systematic review of internet addiction in hospitalized adolescents: proposing a hospital-adapted moderated dual mediation model of emotional dysregulation and social compensation.Frontiers in psychiatry · 2026Pooled it
- "Friending" teens: systematic review of social media in adolescent and young adult health care.Journal of medical Internet research · 2015Pooled it
- Ethical considerations of social media use for surgeons.Surgical endoscopy · 2026Review
- Self-Expression and Sharing around Chronic Illness on TikTok.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2023Article
- Social Media Addiction among Vietnam Youths: Patterns and Correlated Factors.International journal of environmental research and public health · 2022Article
- Patients with rheumatic diseases are ready to use social media in clinical practice; what about rheumatologists? A cross-sectional survey.Rheumatology international · 2022Article
- Ethical Perspectives in Sharing Digital Data for Public Health Surveillance Before and Shortly After the Onset of the COVID-19 Pandemic.Ethics & behavior · 2022Article
- Internet and social media use in cancer patients: association with distress and perceived benefits and limitations.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2021Article
- The Work of Workplace Disclosure: Invisible Chronic Conditions and Opportunities for Design.Proceedings of the ACM on human-computer interaction · 2021Article
- Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review.Frontiers in public health · 2021Review
- Computer-Mediated Communication and Child/Adolescent Friendship Quality after Residential Relocation.Journal of child and family studies · 2021Article
- Social Media Use Among Young Adults With Connective Tissue Disorders: Cross-Sectional Pilot Study.JMIR pediatrics and parenting · 2020Article
- Social Networks and Mobile Applications Use in Young Patients With Kidney Disease.Frontiers in pediatrics · 2019Article
- Strategies to Increase Latino Immigrant Youth Engagement in Health Promotion Using Social Media: Mixed-Methods Study.JMIR public health and surveillance · 2018Article
- Scaling PatientsLikeMe via a "Generalized Platform" for Members with Chronic Illness: Web-Based Survey Study of Benefits Arising.Journal of medical Internet research · 2018Article
- Sharing and helping: predictors of adolescents' willingness to share diabetes personal health information with peers.Journal of the American Medical Informatics Association : JAMIA · 2018Article
- Ethical perspectives on recommending digital technology for patients with mental illness.International journal of bipolar disorders · 2017Review
- Adolescent and Young Adult Use of Social Media for Health and Its Implications.The Journal of adolescent health : official publication of the Society for Adolescent Medicine · 2017Article
- Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment.Journal of medical Internet research · 2017Article
- #PrayForDad: Learning the Semantics Behind Why Social Media Users Disclose Health Information.Proceedings of the ... International AAAI Conference on Weblogs and Social Media. International AAAI Conference on Weblogs and Social Media · 2016Article
Corrections and comments
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Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe literature describes teenagers as active users of social media, who seem to care about privacy, but who also reveal a considerable amount of personal information. There have been no studies of how they manage personal health information on social media.
objectiveTo understand how chronically ill teenage patients manage their privacy on social media sites.
designA qualitative study based on a content analysis of semistructured interviews with 20 hospital patients (12-18 years).
resultsMost teenage patients do not disclose their personal health information on social media, even though the study found a pervasive use of Facebook. Facebook is a place to be a "regular", rather than a sick teenager. It is a place where teenage patients stay up-to-date about their social life-it is not seen as a place to discuss their diagnosis and treatment. The majority of teenage patients don't use social media to come into contact with others with similar conditions and they don't use the internet to find health information about their diagnosis.
conclusionsSocial media play an important role in the social life of teenage patients. They enable young patients to be "regular" teenagers. Teenage patients' online privacy behavior is an expression of their need for self-definition and self-protection.
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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.