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De Simoni et al [11] report a detailed description of the ethics linked to the research on the Talkstroke archives.
To safeguard the identity and intellectual property of participants, this analysis uses paraphrased quotes rather than direct quotations.
The analysis used the archived Talk Stroke online community, a UK-based, moderated online community hosted on the Stroke Association website from 2004 to 2011. In total, the Talk Stroke archive contains 22,173 posts written by 2583 unique usernames [11].
JMIR Cardio 2024;8:e53696
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A previous study by De Simoni et al [18] identified 58 usernames that posted about experiences of pediatric stroke, contributing to a total of 469 posts. We excluded some users: 2 after further analysis revealed that their age at stroke was >18 years and a further 4 users because their age at the time of posting was unknown. A sample of 52 users remained.
J Med Internet Res 2024;26:e49409
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De Simoni et al [20] report a detailed description of the ethics linked to the research in the Talkstroke archives.
A total of 41 survivors were aged ≤18 years at the time of participation, contributing a total of 273 posts; 11 survivors were aged >18 years and contributed 152 posts. Most survivors in the group aged ≤18 years took part in the community less than 1 year after their stroke, with the majority of content contributed indirectly through third-party users (31/35 were mothers, 89%).
J Med Internet Res 2024;26:e49440
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Social Medical Capital: How Patients and Caregivers Can Benefit From Online Social Interactions
J Med Internet Res 2020;22(7):e16337
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