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Cited by 78Health Literacy and Information AccessibilitySocial Media in Health EducationPublic Relations and Crisis Communication

Online Information Exchanges for Parents of Children With a Rare Health Condition: Key Findings From an Online Support Community

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Oprescu, Florin, Campo, Shelly, Lowe, John, Andsager, Julie, Morcuende, Jose A·2013·Journal of Medical Internet Research
DOI 10.2196/jmir.2423PMC PMC3636206
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Abstract

BACKGROUND: The Internet provides new opportunities for parents of children with difficult illnesses and disabilities to find information and support. The Internet is particularly important for caregivers of children with special needs due to numerous health-related decisions they face. For at-risk populations, online support communities can become key settings and channels for health promotion and communication. OBJECTIVE: This study is an initial exploration of the information-seeking and information-provision processes present in an online support community, which is an area of opportunity and interest for Internet-based medical research and practice. The aim of this study was to explore and describe information-related processes of uncertainty management in relationship to clubfoot. Specifically, the study explored interpersonal communication (information seeking and provision) in an online support community serving the needs of parents of children with clubfoot. METHODS: The study population consisted of messages posted to an online community by caregivers (parents) of children with clubfoot. The theoretical framework informing the study was the Uncertainty Management Theory (UMT). The study used content analysis to explore and categorize the content of 775 messages. RESULTS: Women authored 664 of 775 messages (86%) and men authored 47 messages (6%). Caregivers managed uncertainty through information seeking and provision behaviors that were dynamic and multilayered. The ratio of information-seeking messages to information-provision responses was 1 to 4. All five types of information-seeking behaviors proposed by Brashers' schema were identified, most of them being correlated. Information seeking using direct questions was found to be positively correlated to self-disclosure (r=.538), offering of a candidate answer (r=.318), and passive information seeking (r=.253). Self-disclosure was found to be positively correlated to provision of a candidate answer (r=.324), second-guessing (r=.149), and passive information seeking (r=.366). Provision of a candidate answer was found to be positively correlated with second-guessing (r=.193) and passive information seeking (r=.223). Second-guessing was found to be positively correlated to passive information seeking (r=.311). All correlations reported above were statistically significant (P<0.01). Of the 775 messages analyzed, 255 (33%) identified a medical professional or institution by name. Detailed medical information was provided in 101 (13%) messages, with the main source of information identified being personal experience rather than medical sources. CONCLUSION: Online communities can be an effective channel for caregivers, especially women, to seek and offer information required for managing clubfoot-related uncertainty. To enhance communication with parents, health care institutions may need to invest additional resources in user-friendly online information sources and online interactions with caregivers of children with special illnesses such as clubfoot. Furthermore, explorations of information-seeking and information-provision behaviors in online communities can provide valuable data for interdisciplinary health research and practice.

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  • Social media has become a central place for contemporary parenting.

    “The convenience of meeting and discussing health questions and issues with like-minded parents has made social media a central place for contemporary parenting [9].”

    From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [9]

    The Introduction describes online support communities as important channels for caregivers of children with special needs, and the Discussion describes parents exchanging health information in a clubfoot support community. The paper does not establish that social media is central to contemporary parenting generally, or that the convenience of meeting like-minded parents made it so. The indexed passages provide section labels but no page numbers. (LLM, conf=0.86)

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  • Parents use social media platforms as a key resource for their children's health information.

    “Parents use social media platforms, such as Facebook (Meta Platforms, Inc), Instagram (Meta Platforms, Inc), and YouTube (Google LLC) as a key resource for their children’s health information.”

    From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [9]

    The Discussion (Online Group Characteristics and Messages Identifying Health Care Providers; pages not given) reports that parents of children with clubfoot use an online support community to find and exchange information about their children’s care. This supports the central point, but the paper does not establish that parents generally use Facebook, Instagram, or YouTube as key sources of children’s health information. (LLM, conf=0.86)

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Research works printed but not linked: 1

  1. [51]Lincoln YS Guba EG Naturalistic inquiry 1985 Beverly Hills Sage Publications Inc

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Authors
Oprescu, F., Campo, S., Lowe, J., Andsager, J., & Morcuende, J. A.
Affiliations
  • University of the Sunshine Coast (AU)
  • University of Iowa (US)
Corresponding author
Oprescu, Florin
ORCID
Venue
Journal of Medical Internet Research
Publisher
JMIR Publications Inc.
Published
2013-01-22
Volume
15
Issue
1
Pages
e16
ISSN
1438-8871 (ISSN-L)
DOI
10.2196/jmir.2423
PMC
PMC3636206
OpenAlex
W2139097984
Cited by
78
References
63
Citations by year
2025: 4 · 2023: 6 · 2022: 4 · 2021: 4 · 2020: 9 · 2019: 10 · 2018: 2 · 2017: 2 · 2016: 22 · 2015: 4 · 2014: 6 · 2013: 5
FWCI
22.34
Type
journal article
Language
en
Open access
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)
Funders
  • University of the Sunshine Coast
  • National Institutes of Health
Topics
  • Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
  • Social Sciences › Health › Social Media in Health Education
  • Social Sciences › Communication › Public Relations and Crisis Communication
Keywords
clubfoot, online support groups, parents of children with chronic illness, information seeking, information provision, uncertainty management theory, self-disclosure, interpersonal communication, caregiver support, health information sources, clinical decision-making, children with disabilities, health promotion, health communication
MeSH terms
Adult, Child, Clubfoot, Female, Humans, Male, Online Systems, Parents, Self-Help Groups, Social Support, Caregivers, Telemedicine, Internet, Information Seeking Behavior

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