J. Med. Internet Res. - Analysis of a parent-initiated social media campaign for Hirschsprung's disease.

Tópicos

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Resumo

CKGROUND: Social media can be particularly useful for patients or families affected by rare conditions by allowing individuals to form online communities across the world.OBJECTIVE: Our aim in this study was to conduct a descriptive and quantitative analysis of the use of a social media community for Hirschsprung's Disease (HD).METHODS: In July 2011, a mother of a child with HD launched the "Shit Happens" campaign. The campaign uses social media (blogs, Twitter, and Facebook) to engage other families affected by HD. Internet analytics including Google Analytics and Facebook Insights were used to evaluate the reach and responsiveness of this campaign.RESULTS: On the day the HD campaign was launched, 387 people viewed the blog "Roo's Journey". Blog views have now exceeded 5400 views from 37 countries. The Facebook page extends to 46 countries, has an average post reach of 298 users, 1414 "likes", and an overall reach of 131,032 users. The campaign has 135 Twitter followers and 344 tweets at the time of writing. The most common question posted on the Facebook page is related to treatment for extreme diaper rash. Responsiveness assessment demonstrated that within 2 hours of posting, a question could receive 143 views and 20 responses, increasing to 30 responses after 5 hours.CONCLUSIONS: Social media networks are well suited to discussion, support, and advocacy for health-related conditions and can be especially important in connecting families affected by rare conditions. The HD campaign demonstrates the reach and responsiveness of a community that primarily relies on social media to connect families affected by HD. Although responsive, this community is currently lacking consistent access to evidence-based guidance for their common concerns. We will explore innovative consumer-researcher partnerships to offer a solution in future research.

Resumo Limpo

ckground social media can particular use patient famili affect rare condit allow individu form onlin communiti across worldobject aim studi conduct descript quantit analysi use social media communiti hirschsprung diseas hdmethod juli mother child hd launch shit happen campaign campaign use social media blog twitter facebook engag famili affect hd internet analyt includ googl analyt facebook insight use evalu reach respons campaignresult day hd campaign launch peopl view blog roo journey blog view now exceed view countri facebook page extend countri averag post reach user like overal reach user campaign twitter follow tweet time write common question post facebook page relat treatment extrem diaper rash respons assess demonstr within hour post question receiv view respons increas respons hoursconclus social media network well suit discuss support advocaci healthrel condit can especi import connect famili affect rare condit hd campaign demonstr reach respons communiti primarili reli social media connect famili affect hd although respons communiti current lack consist access evidencebas guidanc common concern will explor innov consumerresearch partnership offer solut futur research

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