The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis

Social media has the potential to provide social support for rare disease communities; however, little is known about the use of social media for the expression of medical uncertainty, a common feature of rare diseases. This study aims to evaluate the expression of medical uncertainty on social medi...

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Bibliographic Details
Published in:JMIR infodemiology 2024-01, Vol.4, p.e46693
Main Authors: Pearce, Emily, Raj, Hannah, Emezienna, Ngozika, Gilkey, Melissa B, Lazard, Allison J, Ribisl, Kurt M, Savage, Sharon A, Han, Paul Kj
Format: Article
Language:English
Subjects:
Dyskeratosis Congenita - genetics
Female
Humans
Original Paper
Probability
Rare Diseases
Social Media
Uncertainty
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Summary:Social media has the potential to provide social support for rare disease communities; however, little is known about the use of social media for the expression of medical uncertainty, a common feature of rare diseases. This study aims to evaluate the expression of medical uncertainty on social media in the context of dyskeratosis congenita, a rare cancer-prone inherited bone marrow failure and telomere biology disorder (TBD). We performed a content analysis of uncertainty-related posts on Facebook and Twitter managed by Team Telomere, a patient advocacy group for this rare disease. We assessed the frequency of uncertainty-related posts, uncertainty sources, issues, and management and associations between uncertainty and social support. Across all TBD social media platforms, 45.98% (1269/2760) of posts were uncertainty related. Uncertainty-related posts authored by Team Telomere on Twitter focused on scientific (306/434, 70.5%) or personal (230/434, 53%) issues and reflected uncertainty arising from probability, ambiguity, or complexity. Uncertainty-related posts in conversations among patients and caregivers in the Facebook community group focused on scientific (429/511, 84%), personal (157/511, 30.7%), and practical (114/511, 22.3%) issues, many of which were related to prognostic unknowns. Both platforms suggested uncertainty management strategies that focused on information sharing and community building. Posts reflecting response-focused uncertainty management strategies (eg, emotional regulation) were more frequent on Twitter compared with the Facebook community group (χ =3.9; P=.05), whereas posts reflecting uncertainty-focused management strategies (eg, ordering information) were more frequent in the Facebook community group compared with Twitter (χ =55.1; P
ISSN:2564-1891
2564-1891
DOI:10.2196/46693