Table 2 Sharing Information Axis: description, prevalence, and paraphrased representative quotes by theme
From: Nerve transfer surgery in spinal cord injury: online information sharing
Sharing information Axis | Description | Prevalence, n (%) | Representative Quotes |
|---|---|---|---|
Personal experience | Individual narrative relaying experience of nerve transfer, or of injury and alternative treatment (i.e. tendon transfer) in direct response to a question regarding nerve transfer | 162 (52%) | “My child had surgery last week with nerve grafts for both hands and tendon transfer on the right. In 6 months we expect enough strength to use a manual wheelchair, and in 2 months expect the ability to self-catheterize.” |
Objective information on nerve transfer | Sharing information on nerve transfer surgery, investigations, surgical candidacy, and rehabilitative process | 41 (13%) | “Typically neuro rehab or sports medicine doctors do electromyography. It isn’t invasive at all, takes place in regular patient rooms, and uses a very small needle and electrodes that send a small shock.” |
Link share | Sharing links to externals sites with information on nerve transfer (i.e. news outlets and resources) | 38 (12%) | “My partner participated in this study: https://www.bbc.com/news/health-48868670 ‘Rewiring nerves’ reverses hand and arm paralysis.” |
Tagging | Mentioning the name of another group member in the comments to draw their attention to a post on nerve transfer | 33 (11%) | N/A |
Surgeon/center | Providing the name of a surgeon performing nerve transfer or a center where the procedure is performed | 27 (9%) | “If there’s anyone looking for a good surgeon in USA, Dr. P in Atlanta does nerve and tendon transfers surgery! He has great communication and bedside manner and can help explain the procedure, and whether it’s an option for you.” |
Alternatives | Sharing information on treatments to restore upper extremity function outside of nerve transfer | 10 (3%) | “I’ve undergone stem cell treatments in Europe twice, both successful.” |
Objective information on nerve injury | Providing information on the nature of nerve injury | 3 (< 1%) | “It takes time for swelling on the spinal cord to go down. They will start to get motion back soon.” |