The Online Support Group as a Community: A Thematic Content Analysis of an Online Support Group for Idiopathic Subglottic Stenosis.

Haik D, Kashanchi K, Tajran S, Heilbronn C, Anderson C, Francis DO, Gelbard A, Verma SP
Ann Otol Rhinol Laryngol. 2019 128 (4): 293-299

PMID: 30607984 · DOI:10.1177/0003489418820348

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.

MeSH Terms (12)

Access to Information Disease Management Emotions Female Global Health Humans Information Dissemination Internet Laryngostenosis Male Psychosocial Support Systems Self-Help Groups

Connections (1)

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