ArticleJMIR pediatrics and parenting2022
Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns.
Article in JMIR pediatrics and parenting, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed.
- Dynamics of Digital Support Platform Use Among Family Caregivers of Children With Disabilities: Longitudinal Study.JMIR mHealth and uHealth · 2026Article
- Expectant and New Mothers' Use of Facebook Private Groups to Learn About Infant Sleep and Feeding Practices: Descriptive Qualitative Study.JMIR pediatrics and parenting · 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
- A Mindfulness-Based Lifestyle Intervention Among Economically Marginalized Caregiver-Preschooler Dyads: Feasibility, Acceptability, and Satisfaction.School mental health · 2025Article
- Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases.JMIR human factors · 2024Article
- Best Practices for Designing and Testing Behavioral and Health Communication Interventions for Delivery in Private Facebook Groups: Tutorial.JMIR formative research · 2024Article
- Caregiver-based perception of disease burden in Schaaf-Yang syndrome.Molecular genetics & genomic medicine · 2023Article
- Hospice Social Work Preferences for the Delivery of Facebook Support Groups: A Discrete Choice Experiment.The American journal of hospice & palliative care · 2023Article
- Exome/Genome Sequencing in Undiagnosed Syndromes.Annual review of medicine · 2023Review
- Estimating the Prevalence of De Novo Monogenic Neurodevelopmental Disorders from Large Cohort Studies.Biomedicines · 2022Article
- Factors affecting pathways to care for children and adolescents with complex vascular malformations: parental perspectives.Orphanet journal of rare diseases · 2022Article
- Be in the Digital Room Where it Happens, Part I: Tweeting & Technology for Career Development.Child neurology openArticle
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2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundBecause of the nature of rare diseases with affected individuals being widely geographically dispersed, finding an in-person/offline support group itself can be a challenge. Affected individuals therefore turn to social networking platforms such as Facebook for online support groups.
objectiveWe aim to put into perspective the opportunities Facebook offers as a tool for pediatric rare disease support groups by investigating its use, advantages, and limitations including privacy concerns. We analyze group accessibility and usage, advantages specific to rare diseases, perceived privacy, and views on using Facebook for communication between health professionals and parents, pharmaceutical companies, and study recruitment.
methodsWe contacted 12 Facebook support groups for 12 respective rare diseases with pediatric onset and invited group members to participate in a cross-sectional online survey.
resultsOf 231 respondents, 87.0% (n=201) of respondents were female, 12.6% (n=29) were male, and 0.4% reported another sex (n=1). Respondents' mean age was 41.56 years (SD 9.375); 91.3% (n=211) of respondents were parents (183 mothers, 27 fathers, 1 other sex); 59.7% (n=138) reported a self-initiated search for the Facebook group, 24.2% (n=56) received recommendations from their health professionals, and 12.6% (n=29) recommendations from someone else affected by the disease. On average, support group members visited Facebook at least once a day, visited and passively participated (read/liked posts) several times a week, and participated actively (commented/posted) once a month. As much as 79.2% (183/231) agreed that they would like to have health professionals as members of the respective Facebook group. Group members expressed more concern about privacy issues on Facebook in general than in their respective Facebook support groups, with concerns mostly related to Facebook itself and nongroup members.
conclusionsOur study confirmed that Facebook enhances support group accessibility for parents of children with rare diseases. Group participants perceive a reduction and elimination of distance, a common challenge in rare disease, and Facebook support groups create an environment of perceived privacy. The group's privacy setting can be a critical factor for active support group participation. Sharing personal information and pictures on Facebook is very common among group participants, which shows the importance of discussing and protecting children's privacy rights in this context.
trial registrationGerman Clinical Trials Register DRKS00016067; https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016067.
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