ArticleJournal of medical Internet research2016
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.
Article in Journal of medical Internet research, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 62 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
62 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Communication Technology Use by Caregivers of Adolescents With Mental Health Issues: Systematic Review.JMIR mHealth and uHealth · 2020Pooled it
- Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies.The patient · 2019Pooled it
- A social media-delivered intervention for motor delays: stage-Ib randomized clinical trial and implementation exploration.Pediatric research · 2026Trial
- Dynamics of Digital Support Platform Use Among Family Caregivers of Children With Disabilities: Longitudinal Study.JMIR mHealth and uHealth · 2026Article
- Peer health literacy level and health literacy among school-aged children and adolescents: a multilevel moderated mediation model of internet health information acquisition.BMC public health · 2026Article
- "No Words Needed": Results of a Survey on How Parents of Children With Neurodevelopmental Disorders Perceive (In)formal Peer Support.Child: care, health and development · 2026Article
- The Development and Co-Production of a Caregiver Coping Resource for Pediatric Inflammatory Bowel Disease and Autoimmune Liver Disease.Learning health systems · 2026Article
- The Emotional and Psychological Impact on Families Raising Children With Special Needs: A Primary Care Perspective.Health science reports · 2026Article
- Educational interventions using digital technologies to promote parental empowerment in situations of vulnerability: a scoping review.Revista da Escola de Enfermagem da U S P · 2026Article
- Empowering health literacy in mothers of premature infants during the post-discharge period: a qualitative comparison of nurses' and mothers' perspectives through digital health platforms.BMC pregnancy and childbirth · 2025Article
- Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review.Journal of medical Internet research · 2025Article
- Evaluating the Effectiveness of a Family-Based Lifestyle Intervention for Managing Childhood Overweight: Protocol for a Randomized Controlled Trial.JMIR research protocols · 2025Article
- Enhancing Effect of eHealth Use on the Associations Between Social Supports and Well-Being in Japanese Employed Women Providing Childcare or Care: Bayesian Structural Equation Modeling Study.JMIR pediatrics and parenting · 2025Article
- Exploring the role of digital tools in rare disease management: An interview-based study.Journal of genetic counseling · 2025Article
- Developing Assessments for Key Stakeholders in Pediatric Congenital Heart Disease: Qualitative Pilot Study to Inform Designing of a Medical Education Toy.JMIR formative research · 2025Article
- Content Analysis of a Congenital Cataract Social Media Support Group.Clinical ophthalmology (Auckland, N.Z.) · 2025Article
- Pediatric Subspecialist Referrals to Peer Support for Families.Maternal and child health journal · 2025Article
- The influential factors of anxiety among caregivers of children with CL/P: a path analysis based on diathesis-stress theoretical model.BMC public health · 2024Article
- Parental Burnout-A Model of Risk Factors and Protective Resources Among Mothers of Children with/Without Special Needs.European journal of investigation in health, psychology and education · 2024Article
- Public health education using social learning theory: a systematic scoping review.BMC public health · 2024Article
2 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
backgroundWhen 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.
objectiveThe 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.
methodsA 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.
resultsThe 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.
conclusionsParents 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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Registered trials
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