JOURNAL OF MEDICAL INTERNET RESEARCH DeHoff et al

Original Paper

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

Beth A DeHoff1, MPH; Lisa K Staten2, PhD; Rylin Christine Rodgers3, BS; Scott C Denne4, MD
1
Neonatology, Department of Pediatrics, Indiana University Health Physicians, Indianapolis, IN, United States
2
Department of Social and Behavioral Sciences, Richard M. Fairbanks School of Public Health, Indiana University, Indianapolis, IN, United States
3
Riley Child Development Center, Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, United States
4
Neonatology, Department of Pediatrics, Indiana University School of Medicine, Indianapolis, IN, United States

Corresponding Author:
Beth A DeHoff, MPH
Neonatology
Department of Pediatrics
Indiana University Health Physicians
699 Riley Hospital Dr S
RR208
Indianapolis, IN, 46202
United States
Phone: 1 3179441528
Fax: 1 3179489082
Email: [email protected]

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.

(J Med Internet Res 2016;18(12):e333) doi: 10.2196/jmir.6722

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KEYWORDS
health communication; child; social media; health education; health resources; early childhood; disability; neonatal intensive care
unit; family; maternal-child health services

appointment—about caring for their child and referrals for

Introduction medical and community-level assistance. This usually occurs
Parents of infants and young children with special health care in the hospital just before discharge from the NICU, or in a
needs (CSHCN) are often thrust into a world they know little pediatric specialty office at the end of a diagnosis appointment.
about—a vast network of professionals, systems, and services At these early stages, however, parents are typically passive
that address the needs of children with disabilities. (In this paper, receivers of information as they try to process difficult
“parents” refers to guardians of all types.) At the same time, information without the emotional capacity or skill sets
these young parents must learn to cope emotionally and developed to ask questions of care providers, or even to know
practically with a child’s medical and developmental needs, a what to ask. Mishel’s theory of uncertainty in illness proposes
situation far from the dreams of many young parents. These that stressful health care experiences such as new diagnoses
challenges can confront young parents when their child receives actually interfere with the ability of patients and families to
a diagnosis as a young child delayed in reaching milestones, as process and understand information shared with them [4]. Only
a newborn requiring a neonatal intensive care unit (NICU) stay later do they start to comprehend their situation and begin to
for special health care needs, or even in pregnancy with a seek additional support, sometimes from care providers, but
prenatal diagnosis. A key challenge for professionals who serve more often from family, friends, and the Internet [5]. As parents
these families is in helping them to gain emotional support and, adjust to the diagnosis and start to try to make sense of how to
subsequently, the informational knowledge and skills necessary proceed with their lives and help their child, they report that
to be advocates for and achieve better health outcomes for their their child’s medical and even social work providers have
children. Improving social support is one way to accomplish inadequate and sometimes inaccurate information about services
this. Increasingly, digital communication, and social media in to help the child and family at home and in their community.
particular, are being used to offer online social support for Initially, many parents rely on existing support networks such
parents of CSHCN. Given that research on digital as family or friends who have always been their main source
communication with parents of CSHCN is lacking, we address of all kinds of support. In many cases, these individuals lack an
the following question: Can we expect that social media can be understanding of the child’s diagnosis and resulting challenges.
an effective avenue for emotional and informational support for For emotional understanding and resources, parents have
parents of CSHCN? In attempting to answer this question, we indicated that they prefer to connect with other parents of
offer a novel exploration of how established benefits of CSHCN who live in their geographic area and who have a child
parent-to-parent support and the theoretical framework of online with the same or a similar diagnosis [6,7].
social support can provide new avenues for professional Parent-to-Parent Support as an Avenue of Social
partnerships to support families of CSHCN. Support for Parents of CSHCN
Challenges to Obtaining Necessary Support for Parents The concepts of social support and parent-to-parent support for
of CSHCN CSHCN both had their start in the 1970s. In 1976, Cassel
CSHCN are defined by the US Maternal and Child Health concluded from both human and animal studies that social
Bureau as “those who have or are at increased risk for a chronic support mediates the health impact of stress [8]. In 1981, House
physical, developmental, behavioral or emotional condition and identified four kinds of supportive actions that can help people
who also require health and related services of a type or amount deal with a crisis or chronic stress and allow them to cope, learn,
beyond that required of children generally” [1]. When parents and even grow during their challenges. This support can be
give birth to a CSHCN, or receive such a diagnosis prenatally emotional (being there), instrumental (doing things),
or in the early years of childhood, they are immediately faced informational (sharing knowledge and resources), or appraisal
with a loss of the child they thought they would have and a (helping individuals to see their stressors with more confidence
tremendous amount to learn. The result is emotional stress that in their ability to cope). Such support can provide a person with
is overwhelming as parents sort through medical and the strength to find new contacts and information in order to
developmental information, resources and services, varying solve problems, the cognitive skills necessary to process that
reactions from friends and family, and even adjusting to their information, and the ability to better cope with stress, doubt,
own new identities as parents of a CSHCN [2,3]. and fear [8]. For many young parents of CSHCN, empowerment
gained from social support—particularly a combination of
Shortly after a new diagnosis of a child’s special health care emotional and informational support—can lead them to
need, parents typically receive education from their child’s successfully navigate the medical information and services
hospital NICU or specialist—often at one in-person necessary to help their child.

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Textbox 1. Benefits of parent-to-parent support (adapted from Santelli et al [9]).

• Increased acceptance of child’s special health care needs

• Enhanced parent coping skills

• Increased self-efficacy for parents to work on problems and access services

• Rated as helpful by more than 80% of parents served

• Access to support typically unavailable from any other source

• An essential aspect of family-centered care

The idea of parent-to-parent support for families of CSHCN messaging with families seeking information has been highly
grew out of the movement for family-centered medical care effective, with 80% of parents responding to a text message,
beginning in 1971. Since that time, veteran parents of CSHCN more than twice that of parents who return a call (J Scott, oral
supporting new parents has been promoted as a way for families communication, January 2016). Likewise, Jennifer Akers,
to both reduce stress by realizing they are not alone in their project director of Family Voices Indiana, noted that parents
struggles, and as a way to find solutions and services for their like in-person training but, because they often lack time to
CSHCN. At first, parent-to-parent support was facilitated by attend, many interact on Facebook and “tag” her with questions.
health care professionals who connected a parent to another Family Voices Indiana is an Indiana nonprofit focused on
parent whose child had a similar diagnosis. Over time, parent-to-parent support for CSHCN, particularly in the areas
organizations devoted to providing support to families of of health care financing and advocacy. Akers said the
CSHCN through other parents emerged. Research into importance of parent-to-parent organizations is that they can
parent-to-parent support in the 1990s showed that this type of explain things in ways that parents understand and can apply
social support has several benefits, as Textbox 1 shows [9]. to their lives, which she says often works better for families
than information they receive from clinical and social services
Parents of children with a variety of special health care needs
professionals (J Akers, written communication, January 2016).
who have been mentored by other parents of CSHCN have
A 2014 study noted that low-income families have a particularly
reported increased emotional well-being and better adaptation
difficult time attending in-person support and education
to their new life and identity as the parents of a CSHCN. A 2007
programs, with a recruitment rate of 31% and a high rate of
study of parents of CSHCN found benefits of parent-to-parent
attrition due to problems with child care, transportation, and
support as well, reporting that relationships with other parents
time and work constraints. Swindle and colleagues found
helped them share experiences, feel less alone, and even find
widespread access to the Internet, mobile phones, and social
positive aspects of very painful experiences [10]. While this
media among the same low-income parents, suggesting that,
study focused on personal and phone support, Konrad noted
for low-income parents, technology may be a more accessible
that the Internet and email listservs offered additional avenues
path to education and support than in-person programs [14].
for parent-to-parent support that bridge barriers of geographic
The experiences of these nonprofit organizations serving
distance and rare disorders. An email support forum for parents
families of CSHCN support those findings.
of children with clubfoot was shown to help families, especially
mothers, gain information and manage uncertainty about their Theoretical Frameworks: Theory of Social Support
child’s diagnosis [11]. Today, listservs and email are fading in The availability of social supports helps individuals believe
popularity, while social media and mobile phone apps are they are well supported, which leads them to interpret others as
becoming more popular [12]. A study of military families found supportive, have a better ability to draw from past support, and
a preference for online parent support via Facebook over have the ability to readily think about their current sources of
face-to-face support, particularly among mothers [13]. support. This social cognitive perspective of social support [15]
Regardless of format, the reported benefits of parent-to-parent proposes that perceived support—an individual’s belief that she
support remain consistent across time and modalities. is well supported—leads to better coping skills and higher
Traditionally, health education and social support for parents self-esteem. Individuals under stress engage in appraisals to
of CSHCN were available through in-person trainings and determine whether a stressful situation is a genuine threat, and
support groups. Leaders of family support nonprofit whether they have the personal and social resources to deal with
organizations for families of CSHCN responded to a common the situation.
interview protocol in ways that reinforce the findings of the Parents of newly diagnosed young CSHCN face the stressful
literature. “Support used to happen in group trainings and over situation of receiving a diagnosis of their child’s condition that
kitchen tables,” said Jane Scott, assistant director of About brings significant uncertainty and fear. However, the skills and
Special Kids in Indiana, USA, a not-for-profit organization that self-confidence built through social support can empower
provides parent-to-parent support for Indiana parents of CSHCN. parents to interact more positively with care providers and
“Now it’s social media. It’s not the same as in-person support, medical information [16]. The model shown in Figure 1 adapts
but it has reduced families’ isolation, and it’s especially great Lakey and Cohen’s [15] model of the social support theory to
for rural families without options for in-person groups nearby.” show how emotional and informational support available from
Scott also noted that short message service (SMS) text contact with other parents of CSHCN affects how parents

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perceive the stressful situation with their child and the supports new social networks that exist around parenting CSHCN or
they can count on, which mitigates stress and leads to better dealing with specific diagnoses. New social networks often
self-efficacy and coping skills. This belief in social support and work best in response to a major life change or a specific
the resulting self-efficacy ultimately allow parents to understand stressor, such as a child’s diagnosis. People with similar
their child’s care, seek important services for their children, and experiences can provide support based on their like journeys,
thus gain the potential to experience better health outcomes for providing emotional and informational support from a viewpoint
both parent and child. only someone with similar experiences can provide [8].
Caregivers of children with life-threatening or -altering
Social support can come from existing social networks (such
conditions share an experience unlike any that most of their
as friends and family), new social networks (such as with other
friends and families can understand. Without connections to
families sharing a similar diagnosis or experience), or from
other, similar families, parents of young CSHCN often feel
indigenous or community health workers. While many social
isolated, overwhelmed, uninformed, and uncertain. Many
service professionals focus on helping individuals strengthen
identify a desire to access other families with the same diagnosis
their natural supports through family and friends, interventions
for advice and support [16].
for parents of young CSHCN also should focus on developing
Figure 1. Digital parent-to-parent social support as a path to better outcomes for children with special health care needs (CSHCN). Adaptated from
Lakey and Cohen’s social support theory [15].

similar needs in their own children. The 2009-2010 US National

Informational and Emotional Support of Parents of Survey of Children with Special Health Care Needs showed
CSHCN similar needs among parents, while also identifying additional
Parents of children newly diagnosed with diabetes reported stressors around paying for needed services, especially in the
feeling incompetent, stressed, and anxious, and having low common situation of one parent leaving employment in order
confidence when faced with learning how to administer home to care for the child [12]. Several studies have suggested that
insulin injections, blood tests, and other care in a short period stress can be alleviated through social support, and some have
of time [17]. Parents indicated that the large amount of concluded that learning is difficult until the stress of a situation
information was overwhelming and asked for repeated, short is reduced [8,19].
teaching sessions. In addition, parents indicated they wanted
The desire for social support as a means to learn about and
realistic, truthful information that includes not just instructions
access services is consistent with the instrumental aspect of the
about how to care for their child but reasons why this care is
social support theoretical framework [15]. Given the lack of
needed, in ways that are practical for use in their lives at home
support available in one’s own circle of family and friends, a
[18]. Among parents of premature babies, parents are typically
lack of information in small or rural communities, and the
unable to actively engage in learning about their child’s special
previously referenced barriers to attending in-person training
health care needs immediately after diagnosis [5]. Once parents
and support groups [14,20], this support is difficult to access
become ready to seek information, as indicated by a survey of
for many families. As options for online support have grown,
parents of young CSHCN, their top needs for information
many parents of CSHCN are turning to online social support
include finding ways to help their child develop, handling the
for information on systems and services that could benefit their
emotional impact of having a CSHCN, managing the demands
child [16].
on the parents’ time, finding and accessing community
resources, understanding their child’s rights, and planning for Online Social Support of Parents of CSHCN
the future [19]—needs that reflect the inextricable connection The online social support theory [21] expands the theoretical
between emotional and informational social support. These framework of social support to include sources of support found
needs also reflect practical, real-life coping questions that may on the Internet. This theory is based on the assertion that a
best be answered by other parents who have learned to navigate
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change or perceived change in health can bring on acute Social support is most helpful when it comes from others with
episodes of stress that, without relief of the condition, can lead similar experiences. Online peer support can provide
to chronic stress. The ability of a person to adapt to significant instrumental support of information and resource sharing, as
changes, such as receiving a diagnosis of a special health care well as emotional support of caring, compassion, and inclusion
need in a young child, is influenced by individual and health [16]. Other forms of digital communication, such as blogs,
factors, demographics, and, increasingly, Internet use. The listservs, chat rooms, and apps to record and share a child’s
online social support theory proposes that online support, milestones or health care experiences, can also provide social
particularly through social media, is especially helpful for support but generally work best as an adjunct to Facebook
caregivers of relatives with health concerns, including parents groups, which are the most interactive and interpersonal formats
of CSHCN [22,23]. [23]. When used by parents of CSHCN, online support has been
shown to reduce isolation, increase feelings of self-control,
Healthy People 2020 emphasizes health communication and
increase parents’ feelings of connection to others who
information technology as key methods to improve health
understand, increase self-confidence, and lower depression and
outcomes and increase health care equity and quality, stating
anxiety [27].
specifically the role of technology in widening social support
networks [24]. Digital technologies such as mobile health apps, Numerous studies have concluded that mobile phone, Internet,
social media groups, and other Web-based resources are 21st and social media use crosses demographic lines such as income,
century solutions that directly address the need for accessible race, and age [14,28-30]. Parents of young children have been
health information and communication [25]. Online support using digital communication and social media since their teens
and education have been increasingly used in health care and or early adulthood, and they are already accustomed to
other interventions in a variety of contexts, including with connecting via apps, texting programs, and social media sites
families of children with diabetes, asthma, for social support [31]. All kinds of digital communication
attention-deficit/hyperactivity disorder (ADHD), and technologies—mobile phones, smartphones, Internet, mobile
hydrocephalus [2,26,27]. The ability of these digital technologies apps, Facebook, and other social media use—are most
to provide social support to parents of CSHCN achieves the commonly used by the youngest group of adults: 18- to
traditional aims of education and information sharing through 29-year-olds. In this age group, the most common age group of
a digital avenue of online emotional and informational support. parents of young children, shrinking social disparities in the use
The accessibility of these technologies to parents across racial of these technologies are becoming even smaller. For instance,
and socioeconomic lines is expanding every year. in the United States, the most prevalent users of the Internet
and mobile phones are African Americans, and the most
Social media sites, particularly Facebook groups for parents of
prevalent users of Facebook are Hispanics [14,28-30] (Table
CSHCN, have high levels of intimacy and immediacy, meaning
1). Some studies, however, have found lower overall Internet
that support is available despite members’ distance from one
use among minorities with low levels of education [32].
another, which naturally leads to high levels of social support.

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Table 1. Access to digital technologies for social support across US demographic groupsa.
Demographic groups Access
Annual income (US $)
High (75,000) 98% own mobile phones
78% use Facebook
84% own smartphones
Low (<30,000) 84% own mobile phones
73% use Facebook
50% own smartphones
Age range (years)
18-29 90% use social media
86% own smartphones
30-49 83% own smartphones
All adults 90% own mobile phones
85% access Internet
64% own smartphones
Racial/ethnic/geographic groups
African Americans 68% own smartphones
Hispanics 64% own smartphones
Whites 66% own smartphones
Rural Americans 75% view mobile health services as important

a
Data from [14,28-30].

The findings about digital health communications in the

Provider Use of Online Social Platforms literature are consistent with the experiences of Nerissa Bauer,
Hospitals and health care providers are increasingly MD, a pediatrician involved in research on parent engagement
communicating digitally with one another and, less often, with among children with ADHD at the Indiana University School
patients. A survey of outpatient family practice patients revealed of Medicine, Department of Pediatrics, Children’s Health
that 56% said they wished their doctor used social media to Services Research. Bauer has developed support groups for
interact with them. Despite this interest, many clinicians have parents and children with ADHD and reports that getting parents
been hesitant to enter into electronic health communication with to attend is a “logistical nightmare” and meets with considerable
patients due to US Health Insurance Portability and parent resistance. However, she says that parents who attend
Accountability Act regulatory concerns over privacy and enjoy the in-person group and want to continue. Even so, she
well-publicized, inadvertent breaches of patient confidentiality has found that parents also want information online in general
by health care professionals [33]. However, most privacy and through social media particularly, echoing results from
breaches have been around professionals’ posts on their personal much of the literature. “Parents say they want ways to interact
social media pages, and not from official health care social with health information for their kids online, but we’ve found
media pages. In fact, health care providers are able to that if it’s not on Facebook, if it’s on a different platform than
communicate via social media with a patient if the patient is what they already use, they don’t use it,” she said. At the same
the only one who can see it or if the patient has consented to time, she said, hospitals and academic centers are extremely
communication via the digital platform [34]. The overriding cautious about using Facebook for reasons relating to privacy
principle in providers’ involvement in digital communication and the expectations of parent-professional interaction online,
efforts in general, and in social media in particular, is that the a situation also noted in the literature. “It’s definitely something
patient must be in control of their participation. It is also possible to think about, and parents want it, but there are real hurdles to
that, just as young adults are the highest users of social media, making it work,” she said.
there may be generational differences in physicians’ willingness
to engage with patients and families online. Yet with widely Currently, Bauer is working on parent-developed YouTube
available opportunities to connect online with peers beyond videos of family members talking about life with their child or
their own communities, and with few health care providers grandchild with ADHD, with the idea that parents who help
engaging with patients in this way, patients and families are develop the video will share the video on their own social media
increasingly relying less on medical providers and more on their channels, a video approach to parent-to-parent social support.
peers for health information [35]. “A mom can watch these in her pajamas at 3 AM and find
families who share her experiences,” Bauer said. This project
is early in development and has not yet been implemented and

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evaluated. She also has found blogs have been a successful and social support were important theoretical frameworks for the
controlled way to share information with parents one-way rather subject, resulting in subsequent searches of the databases for
than interactively, but acknowledges that this strategy is better “social support,” “online social support,” and both of these
for education and information sharing than for social support terms with the term “theory” and “theoretical framework.”
(N Bauer, MD, oral communication, March 2016). Searches for health care providers’ use of social media included
the terms “hospital use of social media” and “physician use of
Academic literature and input from family and health leaders
social media,” and each of these terms with “with patients”
all point to the benefits of parent-to-parent communication and
added. This was not a systematic review of the efficacy of
support, as well as barriers that parents of CSHCN face in
eHealth interventions, so although the literature we present
finding the time and means to meet with other parents in similar
covers every subject explored in the search, it includes the
situations. The aim of this scoping review was to consider what
sources most illustrative of these related topics rather than every
research to date has shown regarding the usefulness of digital
article we found in the literature.
communication, and in particular social media, in providing
informational and emotional support to CSHCN. We gleaned supporting information from key-informant
conversations with leaders at four Indiana organizations that
Methods serve families of CSHCN. These conversations focused on how
parents engage with the organization face-to-face and online,
The observations and recommendations in this paper focus on and what strategies for informing and supporting families of
the information needs of parents of CSHCN, the barriers to CSHCN have been most successful. Another key informant was
face-to-face education and communication for this population, an Indianapolis pediatrician engaged in services for and research
and the effectiveness of electronic media for health education regarding children with ADHD, who discussed her work with
and communication with parents and others using eHealth a parent support group and her thoughts about online support
sources. It is based on a scoping review conducted in PubMed, for these parents.
Social Sciences Citation Index, ACM Digital Library, Education
Resources Information Center (ERIC) accessed through Results
ProQuest, and Google Scholar. Scoping reviews, like summary
reviews, use rigorous and transparent research methods but Parents of young CSHCN have enormous needs for
focus on the findings of the reviews rather than the research informational and emotional support, and they often express
used to obtain those findings [36]. We searched the databases the desire to connect with other parents for help with these
using the following phrases, individually and in combination: needs. Juxtaposed with these needs for social support are barriers
“children with special needs,” “children with special health care to attending in-person parent trainings or meetings, issues felt
needs,” “children with disabilities,” “parents of children with most acutely by caregivers of CSHCN who are isolated by
special needs,” “parents of children with special health care geography or the intense care needs of their child. While
needs,” “parents of children with disabilities,” “parents of young research into digital communication for parents of CSHCN is
children with special needs,” “parents of young children with limited, each study that has reported on the issue reveals that
special health care needs,” “parents of young children with using online sources for information and support is not only
disabilities,” “digital communication,” “e-health,” “electronic possible for parents of CSHCN, it’s already happening outside
communication,” “electronic health education,” “health of the health arena. Parents of CSHCN are already using social
communication,” “social media”, “apps,” and “texting.” The media, particularly Facebook, to seek out parent-to-parent online
search also included results found in PubMed’s related articles social support, and these parents report the online groups are
feature. We eliminated articles focusing on digital health helpful in providing informational and emotional support. These
interventions for children rather than parents, and digital health effects are consistent with the social cognitive theory of online
interventions for adults not targeted as parents. We also social support [21] and social cognitive perspective of social
eliminated articles on health education and communication support [15], which proposes that online support enhances
methods published prior to 2005, with searches focused on participants’ belief that they are supported, affecting their
digital health education and communication articles from 2010 perception of stressful situations and allowing them to develop
or later. Articles focused on the needs and challenges of parents coping skills that lead to better health outcomes.
of CSHCN were selected due to their relevancy to the topic
In seeking effective ways to communicate with, educate, and
rather than their date of publication. In each article we used, the
support parents of young CSHCN, the theoretical framework
focus was on the information and communication needs of the
of social support illustrates a way toward future efforts. For
audience, the methods of health communication and education
decades, parent-to-parent support has been a key pathway toward
used, and the results for different racial and socioeconomic
parents’ knowledge and understanding of services and supports
groups.
for their CSHCN and how to access them, within the context
The collection of data also looked specifically at the use of of emotional support. This existing structure reflects the social
social media, mobile phones, and other technology, and barriers support theory, that individuals with good social support in a
to accessing various forms of education and communication, crisis or time of significant change, particularly from individuals
particularly among parents of CSHCN. As the literature revealed with similar experiences, are better able to cope with and move
the information preferences and barriers for parents of CSHCN, forward in the situation. Today, barriers to attending in-person
it became apparent that the theories of social support and online programs and the availability of online social networking has

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moved parent-to-parent support to a largely digital venture, On apps, patients are not only getting health information, but
primarily through Facebook. This online support, consistent also logging their weight, fitness activity, asthma peak flow
with the theory of online social support, can buoy parents with numbers, insulin levels, food intake, and more, moving patients
coping skills and self-efficacy, as well as information, to allow and families from passive recipients of information to active
them to better care for and be advocates for their children. participants in their health and health care [43]. In addition,
apps for mobile phones and tablets are relatively inexpensive,
The literature about how parents of CSHCN find support is
easily customizable to specific patient populations, and widely
echoed in the words of the physicians and professionals in
accessible [44]. Accessibility is growing exponentially, as 68%
personal interviews, and reinforced by other evidence found in
of Americans owned a smartphone in 2015, up from just over
randomized controlled trials about health communications.
a third in 2011. Smartphone ownership rises with income and
Many of these studies have concluded that texting, mobile apps,
education. However, among the 18- to 29-year-olds, smartphone
and social media are all effective ways of educating and
ownership is nearing saturation among all socioeconomic groups
supporting people facing serious life changes or health issues,
[45]. People from low-income households, as well as African
particularly among younger adults such as parents of young
American and Latino smartphone users, are more likely to be
children [31,37]. Following is a look at the literature involving
dependent on their smartphones to obtain information because
each of these digital formats.
many have no other access to the Internet [39]. In a study of
Mobile Phones and Texting teenagers and their caregivers in Bronx, New York, USA, most
Texting is perhaps the first digital technology used for health living at well below the federal poverty line and almost entirely
communication, and it still is in use today, with uses ranging African American and Hispanic, 85% had smartphones, and
from appointment reminders, to health behavior prompts, to more than 70% reported accessing more than three apps a day.
health information messages [38]. The ability to send and Singh and colleagues suggested that smartphones are becoming
receive text messages is widespread in the United States, with more affordable and accessible and, as a result, may allow public
90% of all adults owning a mobile phone. Among adults 18-29 health professionals to approach elimination of health disparities
years old, 98% have a mobile phone, as do 97% of adults age in communication [46].
30-49 years [39]. This popularity gave rise to the text4baby Each study we evaluated that used mobile apps to deliver an
program, which debuted in 2010 as a way to deliver prenatal intervention focused on providing information and allowing
and postpartum health messages to pregnant women and mothers users to record their own information, but lacked any aspect of
who recently delivered, with messages timed to the baby’s social support. Any support provided involved feedback from
gestational age based on due date. As of February 2016, a health care coach or other provider, providing reinforcement
text4baby had served almost 975,000 unique pregnant and but lacking true emotional support. Studies of the effectiveness
recently delivered women [40]. In 2014, a study of the use of of apps for health education and support have been mixed. For
text4baby by 943 women at an army medical center found that instance, one study of an app for asthma management showed
text messages affected the women’s beliefs about health issues, no significant impact on health outcomes [44], while another
particularly the importance of taking prenatal vitamins, the showed that app users increased peak flow, increased forced
importance of seeing a health care provider, and the risks of expiratory rate, and reported a high quality of life with fewer
drinking alcohol during pregnancy. It did not, however, seem unscheduled medical visits [2]. A small study of young women
to affect health behaviors [41]. Other studies found that text aged 18-30 years in a weight loss program showed a preference
health programs had significant effects on smoking cessation for app logs over paper diaries, with 46.2% preferring apps for
and mixed effects on diabetes management and asthma the program, second only to an online discussion forum.
management, with limited evidence and a lack of research into However, retention in the program (67%) was consistent with
the long-term effects of health text programs [27,42]. the low rates of retention and adherence seen in other weight
Researchers have noted that studies of texting as a health loss programs for young women. Hutchesson and colleagues
intervention in general is difficult due to the variety of strategies, felt that the women’s interest in technology interventions was
conditions, and subjects involved, making it unrealistic to promising, however, and noted that health interventions should
evaluate effectiveness of texting interventions outside of small keep up with new and changing digital platforms [47]. Another
programs focused on a narrow subject, such as diabetes [38]. study of pregnant women compared patients who used a mobile
The literature we searched revealed no studies related to texting app to record health information versus women using paper
interventions for parents of CSHCN, and no studies relating diaries. Patients using the app recorded information more
text messaging to social support. Texting in health care has frequently and were more engaged in the intervention than those
exclusively been used for one-way informational messages, using paper diaries. They reported the app was easier to use,
which may have educational benefits but does not provide any less of a bother, and more efficient than paper journals, and app
type of emotional support, which requires some level of users consistently rated their satisfaction with care higher than
interaction and is, for parents of CSHCN, a necessary component those using paper diaries [48]. A pilot app developed for parents
of informational support [19,38]. of high-risk infants allowed parents to record milestones and
aspects of care for their baby, record certain aspects of the
Mobile Phones and Apps electronic medical record, and share what they chose with their
Apps on mobile phones are some of the newest and most baby’s care team and on social media. This model of
interactive digital modalities for education and communication. collaborative data collection was not tested but rather was
offered as a design model. It offers promising avenues for
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communication and support for parents of CSHCN, as it allows 65% now use social media sites, up from 7% just 10 years ago.
parents to engage other parents with the app data on their Nearly all (90%) of young adults aged 18-29 years use social
existing digital platforms for support. However, Liu and media, and use is similar among racial and ethnic groups of all
colleagues also noted that the app’s data collection feature ages. People with higher incomes and higher educational levels
placed a burden on parents who are already overwhelmed to of attainment are more likely to use social media, but these
collect and record data about their child, which they may find differences are far less pronounced among young adults [28].
distressing, as data collection is not typically required of parents With the explosion of social media, public health and clinical
of hospitalized infants [2]. Another app for NICU families is professionals are increasingly exploring its use for health
available commercially for a fee, but it focuses on support communication and education [43]. Among the most receptive
provided to parents via a health coach rather than through to social media may be young women, as social media is most
peer-to-peer social support [49]. An app called NICU commonly used by young adults and women. A 2014 study of
Companion for parents of NICU babies has been developed how mothers of young children use social media revealed that
through the Indiana University School of Medicine [50] as in young moms naturally turn to Facebook during pregnancy and
information-sharing and parent support app. Developers are early childhood to share their experiences, just as they have
expanding this platform to allow parents to track baby’s been doing since they were teenagers or college students. In
progress, providing information they can then share on social fact, Facebook allows users to make “Expecting a Baby” a
media if they choose. This app is in development and could be Facebook life event, and baby pictures on Facebook are so
a source for further research. common, an app called “unbaby.me” allows users to block baby
pictures from their Facebook newsfeed [31].
Although evidence is scant, recent studies have suggested that
collaborative technology may be more readily accepted by While there is a lack of studies regarding the use of texting and
parents than by clinicians [2]. A 2016 study found that phone apps among parents of CSHCN, social media use is much
physicians and other clinicians were resistant to using more commonly studied as an intervention for this population.
patient-collected data from an app unless it didn’t take extra Social media has been shown to reduce isolation, increase
time and was integrated into their normal workflow. Woods emotional support, and provide useful information, addressing
and colleagues concluded that clinicians did not yet see the key challenges for parents of young CSHCN. In a 2013 study
value of patient-collected data and may not be comfortable with of parents of children with hydrocephalus [26], parents cited
the power assigned to the patient as part of his or her own care Facebook and YouTube as their preferred sources of information
team. However, they noted that such digital collaboration could about hydrocephalus and their preferred way to connect with
work if patients bear most of the responsibility for collecting other parents. In that study, 95% of the parents indicated they
the data and sharing it with their providers [51]. Apple has used social media, and this use cut across racial and
introduced its health app for iPhone, which allows individuals socioeconomic lines. A study of a blog and Facebook network
to track their own health, fitness, and medical information and, of parents of youth with Hirschsprung disease found social
in some cases, share it with their doctors, fitting in neatly with media to be a successful way to connect parents of children with
emerging trends in telehealth [52]. Many apps exist or are in rare diseases with support around the world, but noted that this
development to work with the Apple Health app, creating the support lacked evidence-based health information [13]. While
option for shared plans of care, patient-provider communication, Facebook is the most popular social media platform, use of
and other uses that could be helpful to parents of CSHCN. With social media evolves quickly, requiring ongoing research and
very few studies focused on the use of apps by parents of consideration of platforms such as Twitter, Instagram, and other
CSHCN, understanding the potential and effectiveness of this emerging platforms of the future.
technology for that population—and its potential for providing
The support available on social media does more than reduce
social support or enhancing collaborative family-provider
isolation. Because Facebook groups provide nearly instant
partnerships—presents an opportunity for further research.
access to other parents of CSHCN, parents have the opportunity
Social Media to learn about systems and services available to their child and
Social media includes several forums where individuals can how to access them. This informal, online support group helps
share thoughts and experiences with friends and followers by parents cope with and make sense of the maze of local, state,
posting on apps and Internet sites such as Facebook, Twitter, and national systems of care, as well as the overwhelming
Instagram, and other similar sites. Some studies have shown amount of information on the Internet and the network of various
that social media use may help improve health of the users by community services. On social media, parents help other parents
increasing the perception of having social support and navigate this complex web of information and understand what
connections, and by creating patient-centered control of what is important to do first, and eventually to be advocates for their
is and isn’t shared. Health improvements have been observed child’s needs and rights across health, education, community,
in some social media programs centered on smoking cessation and policy arenas [6]. Parents of CSHCN report they have
and nutrition [8,16,22,23]. Potential problems with social media formed meaningful relationships in social media groups, and
may arise if information provided is incorrect, or if a digital that they feel less judged by their social media friends than by
divide exists in which vulnerable populations have no access their friends and family in their “in-person” life. In social media,
to the Internet and social media [37]. With the rapid advances parents find information and support to address their most
of social media use and access to mobile phones, however, this pressing needs, which often are things their family and friends
digital divide appears to be shrinking. Among all US adults, don’t understand. These needs include learning ways to help

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their children’s development, dealing with the emotions of For a health care provider such as a hospital, these tools may
having a CSHCN, handling time demands, finding resources in present a way to encourage parents to connect to support from
the community, planning for the future, and understanding their other parents via social media, without requiring medical
children’s rights. This combination of emotional and providers to directly host a social media site for families. Finding
informational social support provides parents with important ways to work with social media may become important for
information and real skills that can affect outcomes for their pediatric providers because social media seems to offer the most
children. In fact, support from other parents on social media natural and effective means of online social support for parents
has more effect on a parent’s feelings of stress than does their of CSHCN.
child’s functional level [6]. Other studies offered increasing
New efforts focusing on digital communication add to the
evidence that online support, particularly through Facebook,
established success of parent-to-parent social support in allowing
improves feelings of well-being, which, consistent with the
parents to share information about their child with other parents
theory of online social support, assists parents of CSHCN
who have common experiences. Online parent-to-parent support
through help with stress management and coping; functional
uniquely provides the emotional and informational support that
support such as practical advice, information, and assistance;
parents of CSHCN often find difficult to obtain in their own
emotional support; and increased perceptions of being supported
families and communities. Nonprofit organizations and, with
[16]. These benefits are routinely reported by mothers of
professional precautions, larger health care organizations can
CSHCN, as seen in one study focused on moms protesting the
develop interventions around social media strategies, while
closing of an online support network for CSHCN, who praised
health care organizations with privacy and practical concerns
the empowerment they received from the group, from
about maintaining social media interventions can develop mobile
information shared and emotional support [53]. Parents who
phone apps that generate parent-recorded data that families can
receive emotional and informational support from their online
share with their online social networks, or through telemedicine
friends, especially when those friends are geographically close
connections, with their child’s doctor. Apps that allow parents
by or whose children share similar diagnoses, eventually develop
to easily share their child’s progress with social networks could
the belief they are supported and are able to summon the
be a focus of future app development and research.
self-efficacy needed to advocate and pursue services for their
Location-based, opt-in apps could even serve to connect parents
CSHCN.
with children who have similar diagnoses in given locations,
such as in hospital cafeterias. Partnerships with community
Discussion family-to-family organizations who already offer online support
The literature about digital platforms suggests that social media to families of CSHCN could be another option for health care
is ideally suited and already in use for supporting and informing providers, providing an avenue to reach families with
parents of CSHCN, but that its primary use is for information through their community partners’ social media
parent-to-parent support rather than provider-to-parent support. channels. In these ways, parents learn about their children and
Texting programs have mixed success, with their most their needs from health care professionals, share this information
significant impact being made in health education and with their social networks, and then receive from those networks
information sharing. The one-way nature of texting programs the emotional and informational support that applies to real life
does not lend itself well to social support, and the multiple as a parent of a CSHCN. Exploration of potential online
factors involved in texting make it difficult to assess. Because programs to enhance provider-parent relationships should
of these limitations, texting programs are not ideal for digital include research into physicians’ and other medical
communication with parents of CSHCN. professionals’ goals and barriers around online family support.
Additionally, online support among youth with special health
Mobile phone apps are newer formats for health communication, care needs—connecting them with other young people with
which have shown some success with health outcomes and similar diagnoses—would be another new area of research
patient satisfaction. Most are focused strictly on providing within the framework of online social support. In addition,
information and collecting data, making apps an uncertain efforts to further establish associations between social support
platform for social and emotional support. However, the almost and positive health outcomes can lead to greater acceptance of
total saturation of mobile phone use among young adults, such programs and better options for funding.
indications that young adults prefer apps to paper-based health
programs, barriers to in-person training and support, and the Online social support has been shown to be effective in helping
potential relevancy to interactive telehealth and telemedicine parents accept their child’s diagnosis and develop the skills they
make the use of apps an intriguing possibility for parents of need to help their child in the days and years to come. Additional
young CSHCN. Apps for children with serious health care needs research-based evidence about online tools for communication
and hospitalizations, such as babies in intensive care units, could and partnership between parents of CSHCN and physicians
allow parents to record important information about their child’s could advance the adoption of such tools by health care
progress, with the potential to use the app as a tool to share providers if such tools are shown to be effective. Digital
updates via social media, thus creating an avenue for social interventions that work to inform, educate, and empower parents
support. Implementation and evaluation of an app-based of CSHCN, including interventions that work within the
intervention for parents of CSHCN would be a valuable framework of online social support, should be the focus of future
contribution to what is currently limited literature related to this research, with the goal of improving outcomes for CSHCN and
topic. their families.

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Acknowledgments
Scott C Denne, MD, was funded in part by the Indiana Clinical and Translational Sciences Institute, which is supported by National
Institutes of Health grant #UL1TR001108.

Conflicts of Interest
None declared.

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Abbreviations
ADHD: attention-deficit/hyperactivity disorder
CSHCN: children with special health care needs
ERIC: Education Resources Information Center
NICU: neonatal intensive care unit
SMS: short message service

Edited by G Eysenbach; submitted 01.10.16; peer-reviewed by K Herron PhD, M Hanley MA; comments to author 20.10.16; revised
version received 27.10.16; accepted 23.11.16; published 22.12.16
Please cite as:
DeHoff BA, Staten LK, Rodgers RC, Denne SC
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
J Med Internet Res 2016;18(12):e333
URL: http://www.jmir.org/2016/12/e333/
doi: 10.2196/jmir.6722
PMID: 28007689

©Beth DeHoff, Lisa K Staten, Rylin Christine Rodgers, Scott C Denne. Originally published in the Journal of Medical Internet
Research (http://www.jmir.org), 22.12.2016. This is an open-access article distributed under the terms of the Creative Commons
Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction
in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The
complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license
information must be included.

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