期刊
ANNALS OF OTOLOGY RHINOLOGY AND LARYNGOLOGY
卷 128, 期 4, 页码 293-299出版社
SAGE PUBLICATIONS INC
DOI: 10.1177/0003489418820348
关键词
subglottic stenosis; miscellaneous; quality of life; tracheal stenosis; laryngotracheal reconstruction; laryngology; otolaryngology
Objective: Idiopathic subglottic stenosis (iSGS) is a rare disease with few local resources for individuals to use. With the explosive growth of online social networking, platforms such as Facebook possess compelling potential to facilitate user-driven sharing of health information and peer support. This study was performed to better understand the content shared in a busy online community for individuals with iSGS. Methods: The largest online community (OC) for individuals with iSGS, Living With Idiopathic Subglottic Stenosis (LwiSGS), was examined. A thematic content analysis of the communications shared in February of 2018 was performed. A conventional qualitative analysis model was employed to analyze aggregated data. The data were then codified. Results: Analysis demonstrated that communications primarily encompassed three major thematic elements: (1) information sharing; (2) emotional support, expression, and experience sharing; and (3) community building. Positively toned posts grossly overshadowed negatively toned posts by almost a factor of 3. A significant portion of group members requested information from their peers, suggesting a high level of trust toward the resources provided in this group, even those involving a surgical procedure or medication. Conclusion: LwiSGS is a forum for patients with a rare chronic condition to share informational resources, personal experiences, and emotional support, as well as a community with their peers. These data suggest that LwiSGS could be a powerful resource for individuals with iSGS to share information, personal experiences, or emotional support.
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