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.
Highlights
Parents of infants and young children with special health care needs (CSHCN) are often thrust into a world they know little about—a vast network of professionals, systems, and services that address the needs of children with disabilities. (In this paper, “parents” refers to guardians of all types.) At the same time, these young parents must learn to cope emotionally and practically with a child’s medical and developmental needs, a situation far from the dreams of many young parents
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
Given that research on digital communication with parents of CSHCN is lacking, we address the following question: Can we expect that social media can be an effective avenue for emotional and informational support for parents of CSHCN? In attempting to answer this question, we offer a novel exploration of how established benefits of parent-to-parent support and the theoretical framework of online social support can provide new avenues for professional partnerships to support families of CSHCN
Summary
(In this paper, “parents” refers to guardians of all types.) At the same time, these young parents must learn to cope emotionally and practically with a child’s medical and developmental needs, a situation far from the dreams of many young parents These challenges can confront young parents when their child receives a diagnosis as a young child delayed in reaching milestones, as a newborn requiring a neonatal intensive care unit (NICU) stay for special health care needs, or even in pregnancy with a prenatal diagnosis. Given that research on digital communication with parents of CSHCN is lacking, we address the following question: Can we expect that social media can be an effective avenue for emotional and informational support for parents of CSHCN? 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
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