CoChat
Sign Up
Cited by 14Health Literacy and Information AccessibilitySocial Media in Health EducationGenomics and Rare Diseases

Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases

Open access
Doyle, Tom A, Vershaw, Samantha L, Conboy, Erin, Halverson, Colin M E·2024·JMIR Human Factors
DOI 10.2196/57833PMC PMC11730222
Open this paper in CoChat — free account

Abstract

BACKGROUND: The rarity that is inherent in rare disease (RD) often means that patients and parents of children with RDs feel uniquely isolated and therefore are unprepared or unsupported in their care. To overcome this isolation, many within the RD community turn to the internet, and social media groups in particular, to gather useful information about their RDs. While previous research has shown that social media support groups are helpful for those affected by RDs, it is unclear what these groups are particularly useful or helpful for patients and parents of children with RDs. OBJECTIVE: This study aimed to identify what specific features of disease-related support groups (DRSGs) the RD community finds particularly useful or supportive and provide a set of recommendations to improve social media-based RD support groups based on this information. METHODS: Semistructured qualitative interviews were performed with patients and parents of patients with RDs. Interview participants had to be at least 18 years of age at the time of the interview, be seen by a genetics specialist at a partner health care institution and be proficient in the English language. Social media use was not a prerequisite for participation, so interview participants ranged from extensive users of social media to those who chose to remain off all social media. All interviews were conducted by phone, recorded, and then transcribed. Interview transcripts were then coded using the 6 steps outlined by Braun and Clarke. Three researchers (TAD, SLV, and CMEH) performed initial coding. After this, the study team conducted a review of themes and all members of the team agreed upon a final analysis and presentation of data. RESULTS: We conducted 31 interviews (mean age 40, SD 10.04 years; n=27, 87% were women; n=30, 97% were non-Hispanic White). Thematic analysis revealed that social media DRSG users identified the informational usefulness of these groups as being related to the gathering and sharing of specific information about an RD, clarification about the importance and meaning of certain symptoms, and obtaining insight into an RD's progression and prognosis. Participants also identified that DRSGs were useful sources of practical information, such as tips and tricks about managing RD-related issues and concerns. In addition, participants found DRSGs to be a useful space for sharing their disease-related stories but also highlighted a feeling of exhaustion from overexposure and overuse of DRSGs. CONCLUSIONS: This study identifies the usefulness of DRSGs for the RD community and provides a set of recommendations to improve future instances of DRSGs. These recommendations can be used to create DRSGs that are less prone to splintering into other DRSGs, thus minimizing the risk of having important RD-related information unhelpfully dispersed amongst a multitude of support groups.

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Integrity signals

Registry

Crossref · 10.2196/57833

Cites

33 of 33 references verified0 citation errors · 0 not checkable

Statistics

Claims the paper makes

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

A few free checks a day · papers already verified open instantly · results are public

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

Cites

Flagged first, then by citations

Research works printed but not linked: 1

  1. [37]Kiesler S Kraut RE Resnick P Kittur A Burke M Chen Y Kittur N Konstan J Ren Y Riedl J Regulating behavior in online communities Building Successful Online Communities 2011 Cambridge, Massachusetts The MIT Press

Cited by

Sorted by citations

Related

Authors
Doyle, T. A., Vershaw, S. L., Conboy, E., & Halverson, C. M. E.
Affiliations
  • Indiana University Indianapolis (US)
  • Indiana University School of Medicine (US)
Corresponding author
Doyle, Tom A
ORCID
Venue
JMIR Human Factors
Publisher
JMIR Publications Inc.
Published
2024-12-30
Volume
11
Pages
e57833
ISSN
2292-9495 (ISSN-L)
DOI
10.2196/57833
PMC
PMC11730222
OpenAlex
W4405911617
Cited by
14
References
33
Citations by year
2026: 6 · 2025: 8
FWCI
8.22
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • JMIR Human Factors (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • IUScholarWorks (Indiana University) (submittedVersion, cc-by)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
Funders
National Human Genome Research Institute (K01HG012408)
Topics
  • Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
  • Social Sciences › Health › Social Media in Health Education
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Genomics and Rare Diseases
Keywords
rare diseases, social media support groups, online patient communities, parents of children with rare diseases, patient isolation, symptom interpretation, storytelling, excessive social media use, undiagnosed disease, genetic testing, patient-provider communication
MeSH terms
Adult, Child, Female, Humans, Interviews as Topic, Male, Parents, Patients, Self-Help Groups, Rare Diseases, Qualitative Research, Social Media

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review