Michael J Canty1, Sara Breitbart2, Lauren Siegel3, Darcy Fehlings4,5, Golda Milo-Manson5, Naif M Alotaibi2,4, George M Ibrahim2,3,4. 1. Division of Neurosurgery, The Hospital for Sick Children, Toronto, Ontario, M5G 1H4, Canada. Michael.canty@sickkids.ca. 2. Division of Neurosurgery, The Hospital for Sick Children, Toronto, Ontario, M5G 1H4, Canada. 3. Neurosciences and Mental Health Program, The Hospital for Sick Children, Toronto, Ontario, Canada. 4. The University of Toronto, Toronto, Ontario, Canada. 5. Department of Paediatrics, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada.
Abstract
PURPOSE: Selective dorsal rhizotomy (SDR) is a surgical treatment for spasticity, primarily in cerebral palsy (CP). There is a growing trend for patients to seek medical information from their peers on social media platforms. This study qualitatively and quantitatively assessed the use of social media as an information-sharing and support-seeking tool by patients and caregivers. METHODS: A search was performed on Facebook, Twitter, and YouTube. Public information was quantitatively assessed by category, users, year of creation, and country of origin. Representative samples of comments and posts were then qualitatively assessed by thematic analysis. RESULTS: One hundred eighty-five Facebook groups and pages, 97 YouTube videos, and 14 Twitter accounts were identified, based in 13 countries. SDR and CP groups had a mean membership of 3063 and 2339, respectively; SDR and CP pages had a mean number of "likes" of 1650 and 10,711, respectively. Total YouTube video views were 593,135 (mean 6115). Total Twitter followers were 62,609 (mean 2160). Qualitative analysis identified seven categories of comments: emotional support and forming connections (22.34%), sharing information and advice (15.96%), appreciation and successes (31.91%), challenges and difficulties (8.51%), advertising/offering services (4.79%), inequities and access (4.79%), and social media as a second opinion (11.7%). CONCLUSIONS: This study outlines the use of social media platforms in the distribution of information regarding SDR. We highlight the importance placed by patients and caregivers on the advice of their peers. The current report should inform healthcare providers' interactions with patients with respect to information seeking and provision of support.
PURPOSE: Selective dorsal rhizotomy (SDR) is a surgical treatment for spasticity, primarily in cerebral palsy (CP). There is a growing trend for patients to seek medical information from their peers on social media platforms. This study qualitatively and quantitatively assessed the use of social media as an information-sharing and support-seeking tool by patients and caregivers. METHODS: A search was performed on Facebook, Twitter, and YouTube. Public information was quantitatively assessed by category, users, year of creation, and country of origin. Representative samples of comments and posts were then qualitatively assessed by thematic analysis. RESULTS: One hundred eighty-five Facebook groups and pages, 97 YouTube videos, and 14 Twitter accounts were identified, based in 13 countries. SDR and CP groups had a mean membership of 3063 and 2339, respectively; SDR and CP pages had a mean number of "likes" of 1650 and 10,711, respectively. Total YouTube video views were 593,135 (mean 6115). Total Twitter followers were 62,609 (mean 2160). Qualitative analysis identified seven categories of comments: emotional support and forming connections (22.34%), sharing information and advice (15.96%), appreciation and successes (31.91%), challenges and difficulties (8.51%), advertising/offering services (4.79%), inequities and access (4.79%), and social media as a second opinion (11.7%). CONCLUSIONS: This study outlines the use of social media platforms in the distribution of information regarding SDR. We highlight the importance placed by patients and caregivers on the advice of their peers. The current report should inform healthcare providers' interactions with patients with respect to information seeking and provision of support.
Entities:
Keywords:
Cerebral palsy; Selective dorsal rhizotomy; Social media
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