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.
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.
Authors: Ioan Lina; Alexandra Berges; Rafael Ospino; Kevin Motz; Ruth Davis; Catherine Anderson; Mary Stroud; Casey Rodweller; Alexander Gelbard; Alexander T Hillel Journal: Clin Trials Date: 2022-01-06 Impact factor: 2.599
Authors: Kristin H Kroll; Sadie Larsen; Kelsey Lamb; W Hobart Davies; David Cipriano; Terri A deRoon-Cassini; Himanshu Agrawal; Deepa Pawar; Julie Owen; Jennifer N Apps Journal: J Clin Psychol Med Settings Date: 2021-05-31
Authors: Laura Judd-Glossy; Merlin Ariefdjohan; Jill Ketzer; Kristina Matkins; Julie Schletker; Amy Krause; Hope Simmons; Alberto Pena; Luis De La Torre; Andrea Bischoff Journal: Pediatr Surg Int Date: 2021-09-25 Impact factor: 2.003
Authors: Emily G Miller; Amanda L Woodward; Grace Flinchum; Jennifer L Young; Holly K Tabor; Meghan C Halley Journal: Genet Med Date: 2021-07-19 Impact factor: 8.864
Authors: Sunil P Verma; Khodayar Goshtasbi; Lynne D Berry; Catherine Anderson; David O Francis; Alexander Gelbard Journal: Laryngoscope Date: 2020-09-29 Impact factor: 2.970