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Cited by 143Health Literacy and Information AccessibilityFamily and Disability Support ResearchAdolescent and Pediatric Healthcare

The Role of Online Social Support in Supporting and Educating Parents of Young Children With Special Health Care Needs in the United States: A Scoping Review

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DeHoff, Beth A, Staten, Lisa K, Rodgers, Rylin Christine, Denne, Scott C·2016·Journal of Medical Internet Research
DOI 10.2196/jmir.6722PMC PMC5216258
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Abstract

BACKGROUND: When parents of young children with special health care needs (CSHCN) receive their child's diagnosis, they encounter information they may not understand, emotions they may not know how to cope with, and questions about their child's immediate and long-term future that frequently lack answers. The challenge of health care providers is how to prepare parents for caring for their CSHCN, for coping with any resulting challenges, and for accessing the systems and services that can assist them. OBJECTIVE: The purpose of this work was to review evidence of the information and support needs of parents of young CSHCN and to determine whether online social support can serve as an avenue for learning and empowerment for these parents. METHODS: A scoping review identified the challenges, coping mechanisms, and support needs among parents of CSHCN, and the reach and effectiveness of digital technologies with these families and health care providers. We also conducted interviews with professionals serving parents of CSHCN. RESULTS: The literature review and interviews suggested that parents best learn the information they need, and cope with the emotional challenges of raising a CSHCN, with support from other parents of CSHCN, and that young parents in recent years have most often been finding this parent-to-parent support through digital media, particularly social media, consistent with the theory of online social support. Evidence also shows that social media, particularly Facebook, is used by nearly all women aged 18-29 years across racial and socioeconomic lines in the United States. CONCLUSIONS: Parents of young CSHCN experience significant stress but gain understanding, receive support, and develop the ability to care for and be advocates for their child through parent-to-parent emotional and informational social support. Online social support is most effective with young adults of childbearing age, with social media and apps being the most useful within the theoretical framework of social support. This opens new opportunities to effectively educate and support parents of young CSHCN. Providers seeking to inform, educate, and support families of CSHCN should develop strategies to help parents find and use social support through digital resources to facilitate their emotional adjustment and practical abilities to care for and access services for their child.

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  • There is a growing reliance on digital platforms for information sharing and emotional support, especially where geographical dispersal and intense care needs present barriers to in-person meetings.

    “The rising number of social media support groups highlights a growing reliance on digital platforms for information sharing and emotional support, especially in communities where geographical dispersal and intense care needs of the child present barriers to in-person parental meetings or training [28].”

    From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [28]

    The Results (page unavailable) say that parents of young children with special health care needs use social media for informational and emotional support, and that geography and intensive care needs can prevent in-person meetings or training. The Introduction also describes increasing reliance on peers for health information. The paper does not establish that the number of social media support groups is rising, and its findings concern these parents rather than communities generally. (LLM, conf=0.84)

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Cited by

Sorted by citations

Authors
DeHoff, B. A., Staten, L. K., Rodgers, R. C., & Denne, S. C.
Affiliations
  • Indiana University Health (US)
  • Indiana University Indianapolis (US)
  • Riley Hospital for Children (US)
Corresponding author
DeHoff, Beth A
ORCID
Venue
Journal of Medical Internet Research
Publisher
JMIR Publications Inc.
Published
2016-12-22
Volume
18
Issue
12
Pages
e333
ISSN
1438-8871 (ISSN-L)
DOI
10.2196/jmir.6722
PMC
PMC5216258
OpenAlex
W2561642990
Cited by
143
References
4
Citations by year
2026: 16 · 2025: 14 · 2024: 22 · 2023: 15 · 2022: 18 · 2021: 16 · 2020: 15 · 2019: 17 · 2018: 8 · 2017: 2
FWCI
1.72
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)
  • IUScholarWorks (Indiana University) (submittedVersion, cc-by)
  • Purdue University Indianapolis (Indiana University) (submittedVersion, cc-by)
  • Publisher
Funders
  • National Institutes of Health (UL1TR001108)
  • National Center for Advancing Translational Sciences
Topics
  • Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
  • Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
Keywords
online social support, parent-to-parent support, social media, Facebook, parent education, parental stress, coping strategies, digital health technologies, parental advocacy, young parents, health information needs
MeSH terms
Adaptation, Psychological, Adult, Child, Child Health Services, Female, Humans, Male, Parents, Social Support, United States, Children with Disabilities, Disabled Children, Internet

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