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The role of social media in selective dorsal rhizotomy for children: information sharing and social support

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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.

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Authors and Affiliations

  1. Division of Neurosurgery, The Hospital for Sick Children, Toronto, Ontario, M5G 1H4, Canada

    Michael J. Canty, Sara Breitbart, Naif M. Alotaibi & George M. Ibrahim

  2. Neurosciences and Mental Health Program, The Hospital for Sick Children, Toronto, Ontario, Canada

    Lauren Siegel & George M. Ibrahim

  3. The University of Toronto, Toronto, Ontario, Canada

    Darcy Fehlings, Naif M. Alotaibi & George M. Ibrahim

  4. Department of Paediatrics, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada

    Darcy Fehlings & Golda Milo-Manson

Authors
  1. Michael J. Canty
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  2. Sara Breitbart
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  3. Lauren Siegel
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  4. Darcy Fehlings
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  5. Golda Milo-Manson
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  6. Naif M. Alotaibi
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  7. George M. Ibrahim
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Correspondence to Michael J. Canty.

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The authors report no conflict of interest concerning the materials or methods used in this study or the findings specified in this paper.

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Canty, M.J., Breitbart, S., Siegel, L. et al. The role of social media in selective dorsal rhizotomy for children: information sharing and social support. Childs Nerv Syst 35, 2179–2185 (2019). https://doi.org/10.1007/s00381-019-04197-x

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  • DOI: https://doi.org/10.1007/s00381-019-04197-x

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