Analysis of a Parent-Initiated Social Media Campaign for Hirschsprung’s Disease

Abstract

BackgroundSocial media can be particularly useful for patients or families affected by rare conditions by allowing individuals to form online communities across the world.ObjectiveOur 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).MethodsIn 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.ResultsOn 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.ConclusionsSocial 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.

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability

“…Of the 98 research studies included in the review by Moorhead et al, 13 were using Facebook as a means of increasing awareness and communicating about a range of topics (eg, concussion, diabetes, breast cancer, attention-deficit/hyperactivity disorder) [13]. Facebook has also been used as part of a social media campaign intended to raise awareness for Hirschsprung disease and to connect and engage families affected by this rare condition [14]. While reach and responsiveness are considered strengths of social media usage, other studies have reported benefits of creating smaller communities.…”

Feasibility and Efficacy of a Urologic Profession Campaign on Cryptorchidism Using Internet and Social Media

“…The feasibility of performing new media campaigns has been shown for other topics like breastfeeding [14] , smoking cessation [15] , obesity and diabetes [16] , and Hirschsprungs's disease [17] . We report for the first time of a new media campaign in the field of urology.…”

Identifying Information Needs for Hirschsprung Disease Through Caregiver Involvement via Social Media: A Prioritization Study and Literature Review (Preprint)

“…[7] This initial work demonstrated that this community was highly responsive and the campaign helped to connect families across the globe. We then jointly developed the present study to complete a needs assessment via social media to prioritize information needs related to HD.…”