Analysis of a Parent-Initiated Social Media Campaign for Hirschsprung’s Disease
Open accessAbstract
BACKGROUND: 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.
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Facebook is the most commonly used social media platform among parents and caregivers of children with rare genetic diseases.
“especially Facebook (Meta Platforms, Inc), particularly the group function.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
The Results (Overview and Reach; page not provided) describe an active Facebook community for caregivers of children with Hirschsprung’s disease and report greater reach for its Facebook page than for its Twitter account. The paper does not establish that Facebook is the most commonly used platform among caregivers across rare genetic diseases, and it describes a Facebook page rather than a group function. (LLM, conf=0.85)
Experimental — accuracy not yet measuredFour included studies collected data using Facebook searches or groups that could include members across multiple countries.
“Altogether, 4 studies [18,20,21,25] (2 US-based [21,25] and 2 Germany-based [18,20]) collected data using Facebook searches or groups that could include members across multiple countries.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
The Methods (Reach and Responsiveness) describe collecting Facebook analytics and analyzing community questions, and the Results (Reach) report that the Facebook page reached 46 countries. However, the Introduction locates this campaign in Manitoba, Canada, so this paper does not support classifying the study as US- or Germany-based. It also cannot establish the citing sentence’s count of four studies. (LLM, conf=0.87)
Experimental — accuracy not yet measuredTwitter was used for similar content to Facebook posts but with less engagement.
“Notably, 2 studies [19,21] mentioned the use of Twitter (subsequently rebranded X; X Corp), often used for similar content to Facebook posts but with less engagement.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
The Results > Overview says Facebook posts were shared as tweets and that both platforms shared similar links and information. Results > Reach reports 135 Twitter followers versus 1,414 Facebook likes, but the paper does not compare engagement on the two platforms; its responsiveness analysis covers Facebook only. Thus, the claim of less Twitter engagement is not established. (LLM, conf=0.84)
Experimental — accuracy not yet measuredFacebook was found to have the largest proportion of support groups compared to other sites.
“Facebook was the most commonly used platform and was found to have the largest proportion of support groups compared to other sites [14,16,21].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
The Results > Overview passage says the Hirschsprung’s Facebook page primarily served as a support network. The paper examines one campaign across Facebook, Twitter, and a blog; it does not compare the proportion of support groups on those sites or establish that Facebook had the largest proportion. (LLM, conf=0.84)
Experimental — accuracy not yet measuredDisease advocacy was often prevalent in online support groups.
“Altogether, 3 studies [20,21,24] highlighted that disease advocacy was often prevalent”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
The Abstract Conclusions describe social media networks as well suited to advocacy, and the Results (Overview; page unavailable) describe a campaign within the HD community to increase recognition of the disease. The paper does not establish that disease advocacy was often prevalent across online support groups. (LLM, conf=0.82)
Experimental — accuracy not yet measured
Parents sought or shared practical information on caring for a child with a rare genetic disease in 9 included studies.
“Practical information on caring for a child with a rare genetic disease was sought or shared by parents in 9 [14-16,18,21-25] of the included studies.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
The Results (page unavailable) report parents asking practical care questions about diaper rash, bowel treatments, potty training, and diet. The Introduction identifies Hirschsprung’s disease as rare, but our copy does not identify it as genetic. The count of nine studies is the citing review’s synthesis, not a finding attributed to this individual study. (LLM, conf=0.84)
Experimental — accuracy not yet measuredParents felt the presence of a health care provider in social media groups could reduce misinformation.
“Two studies [18,21] noted that parents felt the presence of a health care provider in social media groups could reduce misinformation.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
The Discussion (Principal Findings; page unavailable) says a researcher–knowledge-user partnership could help overcome misinformation and notes the absence of evidence-informed input from health care providers. It does not report that parents expressed this view, so the attribution to parents’ feelings is unsupported. (LLM, conf=0.86)
Experimental — accuracy not yet measuredParents would like health care professionals as members of social media groups.
“There are mixed opinions on whether physician involvement in these groups would be welcomed by parents and caregivers, although 2 studies [18,21] highlight that parents would like health care professionals as members.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
The Discussion (Principal Findings; page unavailable) says caregivers seek information and advice, while evidence-informed input from health care providers has been absent. The Conclusions propose partnerships between caregivers and clinicians. Neither passage establishes that parents want health care professionals to be members of their social media groups. (LLM, conf=0.82)
Experimental — accuracy not yet measuredSome studies are based on data from the early 2010s, when internet access and social media use were less prevalent.
“Additionally, some studies are based on data from the early 2010s, when internet access and social media use were less prevalent [21,23,26].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
The Abstract (Methods; page unavailable) dates the campaign’s launch to July 2011, supporting the early-2010s timing. The Introduction and Discussion (Strengths and Limitations; pages unavailable) discuss internet and social-media access but do not establish that either was less prevalent then than later. (LLM, conf=0.84)
Experimental — accuracy not yet measuredFacebook was reported to provide guidance and experience from other families, personal story sharing, and information on events.
“Facebook was reported to provide guidance and experience from other families, personal story sharing, and information on events [21,24,26].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
Four included studies commented on the sharing of information by parents via these groups.
“Not only are parents accessing information via these groups, but also 4 studies [18,21,22,24] commented on the sharing of information.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
Almost half of the included studies reported that parents were sharing their child's personal experiences and stories within these groups.
“Almost half of the included studies reported that parents were sharing their child’s personal experiences and stories within these groups [14,18,20,21,24].”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
Parents use social media for medical information finding.
“Eight studies [16,20-26] showed parental use of social media for medical information finding.”
From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [21]
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References 20 · Cited by 37
Research works printed but not linked: 20
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- Authors
- Wittmeier, K., Holland, C., Hobbs-Murison, K., Crawford, E., Beauchamp, C., Milne, B., Morris, M., & Keijzer, R.
- Affiliations
- Winnipeg Regional Health Authority (CA)
- Health Sciences Centre (CA)
- Children's Hospital Research Institute of Manitoba (CA)
- Corresponding author
- Keijzer, Richard
- Venue
- Journal of Medical Internet Research
- Publisher
- JMIR Publications Inc.
- Published
- 2014-12-11
- Volume
- 16
- Issue
- 12
- Pages
- e288
- ISSN
- 1438-8871 (ISSN-L)
- PMC
- PMC4275490
- OpenAlex
- W2086670178
- Cited by
- 37
- References
- 20
- Citations by year
- 2025: 4 · 2024: 1 · 2023: 3 · 2022: 4 · 2021: 4 · 2020: 3 · 2019: 2 · 2018: 5 · 2017: 5 · 2016: 5 · 2015: 1
- FWCI
- 4.68
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- Journal of Medical Internet Research (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Topics
- Social Sciences › Health › Social Media in Health Education
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Social Sciences › Communication › Social Media and Politics
- Keywords
- Hirschsprung disease, social media campaigns, rare diseases, online patient communities, Facebook, Twitter, diaper dermatitis, family support
- MeSH terms
- Adult, Child, Female, Hirschsprung Disease, Humans, Male, Parents, Internet, Health Communication, Social Networking, Social Media
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